MP-Lifestyles discussion, Advocate Moderated > MP-Lifestyle and Basic Science Discussion > Forum for MP Lifestyles Discussions > Unexpected Improvements on MP
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MP-Lifestyles discussion, Advocate Moderated > MP-Lifestyle and Basic Science Discussion > Forum for MP Lifestyles Discussions > Unexpected Improvements on MP |
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Elisabeth Health Professional
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Hi! My diagnosis is CFS/FM and I've been on the MP for 3 months so far (whoo-hoo!)  . I've already noticed that my pinkish-red, puffy gums are returning to a nice shade of light pink again and my gum recession (I've been told that I "brushed my gums away" when I had braces) is diminishing. My joint aching is gone for the most part, and I'm weaning down on one of my anti-depressants. Also, my seasonal allergies seem manageable now that I'm off of allergy shots (to be on the MP), even though I couldn't go without them previously for almost 20 yrs. without getting a sinus infection or bronchitis!! I think it would be very encouraging to hear from others what unexpected improvements they've seen from being on the MP so far. It might help us recognize improvements in ourselves that we hadn't noticed and give us some possible things to look forward to...! Thanks! Elisabeth  |
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Julia . 
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Elisabeth, Great to hear of your improvements! I kept a list of symptoms, and noted their progress as I went along. But what actually happened was that I had to keep adding to the list, as more and more things resolved that I'd never thought of as part of my illness - indeed, some of them I'd never realised were anything abnormal at all! But if I were back in your position, I wouldn't want anyone telling me what I might expect, because they were such lovely surprises  Julia  see Marshall Protocol Success Stories Members' stories of their improving health |
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Elisabeth Health Professional
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Thanks Julia. I imagine I'm going to get MANY surprises (and I can't wait!). ELisabeth |
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Aunt Diana Member 
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Hi Elisabeth, I found the gum improvement to be the earliest surprise....and it was such a nice one; since I had had periodental disease all my life and must have owned every gadget known to man to improve my gums. My mantra used to be "have toothbrush will travel". It is such a validation of the correctness of the science behind the MP. I wish I had made a list of symptoms at the outset. Every now and then it will occur to me that something is no longer there or no longer happening. But my memory doesn't serve me well, so I forget them. Ah....the ability to read and retain was a big one for me. I can now read books again and remember what I read. Waking up actually feeling refreshed is another. There are dozens more like that....I just can't think of them now. |
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Deb Grabetz Moderator
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Hi Elisabeth, I had something similar in my first few months of MP. On one side of my mouth I had tissue near a crown that was always tender and swollen for over 18 years. I would tell my dentist every time I went for a cleaning, he would look and tell me everything looked normal and to try flossing or rinsing more--now completely gone. On the other side my jaw always seemed swollen and my teeth did not come together nicely-- now completely gone! There must be something to gum tissue healing quickly...A nice surprise for sure! |
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Elisabeth Health Professional
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Thanks for sharing Aunt Diana! It's so encouraging to me to hear about waking up feeling refreshed; I really look forward to that day. Right now FATIGUE seems to be a major part of my herxing (along w/ jaw/gum discomfort - TMJ too!). When I was younger I used to "spring" out of bed and thought that wasn't so any longer b/c I was the dreaded "over 40" *gasp* *sob*! But, then I got "diagnosed" and found the MP, so am hoping for more bed springing in my future - ha! I also used to have MAJOR dental problems even though I brushed at least 3 times and flossed daily. My X (who wasn't nice) used to joke that someday all of my teeth may fall out; I often wondered if they wouldn't myself. I've had 4 root canals, an apicoectomy (an incision is made along the jawline and a root canal done from the "bottom up"), and even finally had one of them pulled by an oral surgeon. I had to BEG him to pull it, since there were no signs of infection on the X-ray. One night my jaw pain was so bad that I contemplated pulling it myself b/c I was SURE it was still abscessing.... Ahh the horror stories we would tell (if we could remember them)!!  Have a great day!! Elisabeth |
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k Member
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Becoming less angry - completely unexpected. I don't think I realised how angry I was all the time until it has decreased a bit and I have become calmer. k |
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Elisabeth Health Professional
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Wow! That's encouraging. I think I probably feel angry a lot - but then I have 4 kids!! Go figure.... Elisabeth |
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natalie17 Member 
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My hair grows much faster now. I always wanted it to grow grow grow and it just sort of sat there, now it grows super fast, even my friend/hairdresser commented... Strange! |
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PaulT Member
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Pre-Mp I had constant build up of tartar on my teeth - it's now gone - haven't had any for months. Probably stacks of other things which I will post as I think of them |
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Elisabeth Health Professional
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I just realized today that it seems like my tear ducts are producing their own/adequate tears now. About 10 yrs ago I was told that they weren't producing enough tears and have gradually been using more and more artificial tears - especially upon awakening in the a.m.'s. When I would wake up my eyes would feel so dry it was scary and my eyes would literally BURN when I put the drops in!!!  . . . and I've only been on the MP for 3 mos - WOW! Elisabeth |
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Julia .
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PaulT, Same here about the disappearance of tartar. After a couple of years on MP, my dentist commented on how well I was looking after my teeth - he had very little cleaning to do. I told him there was no change in routines, just that I was on the MP! Now (four years on MP) he doesn't need to clean them at all Julia |
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Elisabeth Health Professional
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Wow! I hope that I get to the point of not having to have my teeth cleaned! After 4 root canals & 2 rounds in braces, I am SO DONE w/ oral procedures!! I always wonder out loud when I'm there why someone doesn't invent a "muffler" for all their "equipment". It's enough to rattle a girls' nerves!!  However, I'm not gonna tell my kids about this, otherwise THEY'LL wanna start them MP - so they don't have to brush their teeth (ain't gonna happen while THIS mama's around!) Elisabeth |
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natalie17 Member
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I'm hoping for dental improvements - I had 11 fillings done in 2 weeks when I was 16. I just had my 13th done yesterday. Both my grandmother's had dentures by their mid 20s.. I don't want to end up with that! (I'll be 22 in September). |
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Dr Trevor Marshall Foundation Staff 
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Elisabeth, If your Kids are Th1 compromised (and I will lay odds they are) then no amount of brushing will have any effect on your kids' tooth decay, nor the erosion of calcium from them, over time. |
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natalie17 Member
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Elisabeth - I believe I am proof of what Dr. Marshall said above. I brushed 3 times a day as a kid, ate a lot of calcium, didn't have a sweet tooth and still my teeth are in the condition they are in. I needed about 10 fillings in my baby teeth but my dentsit only did seals as she didn't se the point in filling teeth that were going to fall out. I was Th1 compromised obviously.. Then you look at my brother, who is 20. Used to brush his teeth once a day if lucky, wouldn't eat anything but desserts half his life and lived off cordial (I was a water drinker) and he's never had a tooth problem his whole life. Then there's the extreme of my grandparents - Nonna with dentures by the age of 25, Nonnoo (grandfather) is turning 80 this year and still has not needed a filling or any dental work. My grandparents are both otherwise very healthy and active (touch wood), but wanted to mention as the contrast is insane. Of course Nonnoo always makes fun of me.. |
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PaulT Member
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Sorry this is off the topic of improvements but while we're comparing grandmother's teeth .. . . .. mine took herself to the dentist at age 15 and had ALL her teeth pulled - I'm not sure what her parents said when she got home. The family legend said she was sick of cleaning them and thought that dentures would be less trouble  - anyway she spent the next 70 years complaining about the dentures (and incidently suffering TH1 symptoms badly). |
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Elisabeth Health Professional
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nnOK you guys! I had a couple of busy days and am just now getting back to posting.... Dr. M - Yes, I believe too that my children are Th1 compromised (as well as my mother and grandmother - who's 2 B 97 in Sept; the MP would KILL her!). Darn it! Is mothering ever anything but a guilt trip?!? They say that 'your 1st child survives IN SPITE of you' (b/c of lack of experience/skill), but I believe now they're ALL surviving in spite of me! Obviously I'm aware that I didn't CONSCIOUSLY/PURPOSEFULLY pass on these bacteria. In fact, if I'd known how ill I was/becoming I probably would have opted not to have children at all, even though I call/view them as "the loves of my life"....My 1st dtr has Psoriasis & hypoglycemia (yes, she got those from me, but hers Ps. is much worse than mine). 2nd dtr has depression (I can remember my 1st depressive feelings over 5th grade X-mas break; didn't know what they were), (?) anorexia nervosa/bulemia(?) (I was anorexic/bulemic my Sr. yr H.S.), seasonal allergies & on allergy shots (I was on them ~20 yrs) + EXTREME allergies to even fruits, etc when eaten w/ resulting anaphylactic shock sx's; carries medicine w/ her ALL THE TIME just in case. Son has seasonal allergies & on allergy shots, hypoglycemia. 3rd dtr seems "normal" - whatever that is, but for the sake of context will define it as Th1 sx free at present! . . . and then there' my husband; as "heatlhy as a horse" so to speak , but unwittingly married into a family of "sickies". And to think that we were hopeful that he'd be training me to compete in marathons and triathlons w/ him...! Sometimes I want to say to the 3 oldest kids: "OK guys, You wanna be on the MP NOW or LATER?!?" I'm sure they'd all say "No!!!!" right now.... It's hard not to feel guilty/sad when you come to understand you've unintentionally brought disappointment, sorrow and pain into people's lives that you love so much. Unfortunately I guess that's just a part of the HUMAN EXPERIENCE.... Natalie - My mother has quite a similar dental history to yours. Talk about a "clean fanatic"(!) and that includes her oral care, yet cavity after cavity after cavity. She's had quite a few of her teeth pulled over time due to continued such.... PaulT - I think your story was quite "on the subject", besides being sad/hilarious all at once! THE POOR WOMAN!!!! To me that's like the extreme acting out of "A stitch in time saves nine"!! I've never heard of such "preventive measures" before & wonder what made her even think of that "intervention"; I guess she'd not had much experience around folks w/ dentures?!? Thanks for sharing. A little humor always lightens the load I think! Elisabeth |
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eClaire Member 
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I am always amazed at the number of people on this site who have had peridontal disease and found relief on the MP. I've lost five molars, but then again, I hit a tree going 60mph at age 20, knocking the tree down and rolling and having to have emergency surgery on my wisdom teeth two days later--and so, plenty of people lose molars in the years after an accident like that. I NEVER had plaque. My gums always looked great. I could go 10 years in between cleanings. Now, on the MP, I know when I'm having significant IP when the plaque builds up such that I could clean my teeth with a metal pick every day, no amount of brushing would take care of what is going on. Improvements that surprised me? How quickly minor urinary incontinence went away (a common problem for women as they age, particularly when they've had kids...thing is, I never had kids). Also, I only had the beginning of peripheral neuropathy in both feet (slight tingly that never went away once it started) and one wrist the year before starting the MP, and it is totally gone now. Oh, and symptoms that suggested hypoglycemia totally went away. I never could have fasted before and I do believe that that is something I could do now (but will hold off trying until I am well). Claire Last edited on Sat Jun 28th, 2008 00:47 by eClaire |
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Deb Grabetz Moderator
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k wrote: Becoming less angry - completely unexpected. I don't think I realised how angry I was all the time until it has decreased a bit and I have become calmer. Ditto! By nature I've always been pretty easy going but still noticed the irritability that would kick in. Lately this has changed for me, it's very interesting to see even much more patience in my life since improving with MP protocol! Personally, I have been amazed by partial return of vision in my left eye. I was legally blind in that eye since a neurosarc flare in 1990. Fortunately my right eye was not affected so I have relied on one eye all these years. When I started MP, I would think to myself is this at all possible and would periodically shut my eye to see if any improvement. I posted just a few months ago that my sight had improved by approximately 50% and plan in August to have another visual field to update with exact results. Will post these results ! |
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MarkN Member 
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I got one! I don't have oily skin anymore. |
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Deb Grabetz Moderator
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I was pleasantly surprised by not only my sinuses improving 99.9% on most days with a rare and occasional herx...but also the disappearance of swelling in my jaw tissue, muscle area along the jaw, mastoid (behind the ear), ears, gums and throat. I have now come to realize that I had inflammation in all of these areas, which included trouble with the connecting tissue to my ears. This 18 year problem has now settled to the point that I have to remind myself how miserable I had always felt in previous years with all of this undx'd inflammation! Oh yes...Makes me very Last edited on Thu Jul 10th, 2008 22:35 by Deb Grabetz |
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Aunt Diana Member
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Oh yes....that reminds me of my "allergies" which apparently were not alllergies at all, since they have all disappeared. I had hepa filters, special bedding, popped claritin and benadryl all the time and felt miserable with itchy eyes and stuffy head. In a year or so I'm going to try a new patch test for hair dye, hoping that perhaps that allergy will leave as well. When I consider the money I am saving by not needing hepa filters, allergy meds, the Allergist and his weekly pinprick....(which did no good whatever) and all the stuff I used to get in the health food store...I'm sure I spend less on the MP meds. |
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Deb Grabetz Moderator
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Oh yes, Diana thanks for mentioning the allergies. I went through the same thing...tried an Ionic Breeze in my bedroom, plastic allergen covers on my pillows, used Seldane, Seldane D, took Allegra daily, *Flonase, *Nasalcort, tried homeopathic drops, allergy shots (*which were I'm sure only aggravative as steroids), seemed to react to everything, ...after a year on MP, the word allergy doesn't even cross my mind, it is like it disappeared from my"thought" vocabulary after many, many years!  |
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stoneyhill Member 
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I don't know how to say this and be polite but it is an unexpected improvement that is appreciated much more by wifey than me. Flatulence no longer is odoriferous. A year ago the grand kids would run into the bedroom to awaken me with their grandmother and all shout, "Granpappy, you have night gas! PeaYoo." Now, just the other day, I was at the kitchen sink with my back to wifey who walked up behind me as I broke a little wind. I turned and saw her. She frowned. I said, "What?" "They don't stink." She smiled. This improvement has made my diet of lotsa beans much more endurable for her. |
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Joyful Foundation Staff 
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Hey Stoney, THAT is worth REPORTING for sure! Thanks for sharing.  |
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Elisabeth Health Professional
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This may sound lame compared to a lot of improvements, but it's just something I noticed.... I no longer am "sore" on the palms of my hands (especially the "heel" of my hand). I used to rub them all of the time w/ the thumb of opposite hand b/c they ached, were "stiff" and sore. I attributed the discomfort to "aging, arthritis, ???". Now I rub them (out of habit) and they're not sore or "stiff" anymore. They actually feel pliable!! Also, MarkN: Even though I'm in my 40's I still struggle w/ oily skin, but am noticing it clearing/drying up as I progress on the MP. Pretty cool, huh?!? Elisabeth |
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martysfolks Member
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I have some great news! Got my blood work results today. Looking back on my posts, I said that my cardiologist was very concerned about my skyrocketing triglyceride count, cholesterol both HDL abd LDL were all wacky. (I've had 4 heart surgeries, been treated with statins and the CAD continued to progress. She was begging me to promise her that I would go back on Pravachol. She wouldn't let me out of the office unless I promised. Now she is not a normal doc, she is a friend as well, but a rather uninformed one when it comes to this protocol. I have tried to enlighten her and she is not open. Anyway, I promised, but did not take the Pravachol and my triglycerides continued to climb. I wrote and got responses from Meg and Aussie Barb. Even though the triglycerides were almost at fatal level, I continued with the protocol and trusted. Well, congratulations to all of you and to me. My Triglyceride level went from 450 down to 125 without statins, change of diet or exercise. This is truly a miracle! Thank you Trevor and the whole gang. I don't have problems with my heart rythms any longer and having my count drop like that was pure joy. Dolores P. Rosner |
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Freddie Ash Member 
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HI ALL This is Fred in WV. I guess that I was different than all that have posted to this subject. I did expect all my health problems to go away. That may sound odd to every one here. But back in the mid 1980s when I would have something new going on I would say to my doc, "That is most likely do to the Sarcoidosis." He would say, "You can have other diseases besides Sarcoidosis." So like I said in another post in the last few days, WHAT OTHER DISEASES. Nothing ever supprised me about Sarcoidosis. When I was diagnosed in Feb 1982, after 9.5 years of seeing a lot of doctors over that time frame, and I found out the doctors or nurses knew nothing about sarc I started reading in all the librarys and book stores that I could fine for info about sarc and make copies for a file I was keeping. Even doctors wanted to know what I had in my file. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Kas Member 
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I don't care if the MP takes me forever, as long as I am seeing improvements and my disease is not deteriorating. Although I have to take things slowly, ( especially due to kidney IP, which was manifested by the MP, but must have been occult) and have had many personal setbacks which have impeded the speed of my progress, I believe I am still way better off than someone who has been on pred for the same length of time as I have been MP'ing. Here are some of what I consider to be my small successes: -I have been able to continue working throughout my 13 months straight on the MP. It has not left me more fatigued at this point, nor am I am at all brain fogged - in fact, I would say that I have more clarity than ever and an excellent memory. I can remember the names of 35 students in a class and recall them within ten minutes. Working keeps me from focusing on any herxy type aches and pains and the contact with my colleagues is a tonic. - I have not had a day of absence for illness the entire semester. I have no spleen, and against my doc's advice, I declined the flu shot and stayed well! I may never have it again, as I had the best winter of my lfe - no colds, no flus, no sinus infections, which used to plague me every month or two. I cannot believe those have vanished!! Dr M told me not to worry about a student in my class who has TB, I didn't and I was fine. My doc has remarked that my only visits to her are for MP checkups and bloodwork pertaining to it. As a result, my claims for medicines are negligible these days. - I have always been a huge vaginal yeast sufferer. My doctor used to say she had never seen anyone with a probelm as bad as mine. Well, in my early MP days, I had more than my fair share of it, but suddenly, ( and I cannot believe this myself!), I hardly know what yeast is. I have boxes of Cannesten cream lying unopenend. Of course, the yeast beast may come back to bite me as I slowly move forward to larger doses of abx, but for now, the reprieve is better than chocolate! - I am 53 years old. I am in perimenopause, but I have not even known a hot flash/flush and seem to suffer none of the problems ladies at this stage of life do. Granted, I do use a natural progesterone cream, and that may be doing me good, too, says my pro MP natural gyn. Staying out of the sun has ensured no crow like neck yet, and as a natural redhead, has kept freckles and sun damage at bay. I am still wearing my size 8- 10 clothes, and, to date, have no acquired the middle aged abdominal spread so typical of my age group. I have not even yet had to use hair dye. Could Benicar be the fountain of youth??! - I have pre- diabetes, but since being on the MP, my sugar levels are within the normal range and I hope never to get the disease. Have my lungs improved? Not sure, as I have refused my annual CT this year. I am having a LFT test tomorrow, so will see how that goes and I am hoping that things are not worse and perhaps even better. Has my liver improved ? Well, it's not worse - it is still waxing and waning, but I have every confidence that it will improve as I progress over time, and so will the kidneys which I never even knew were affected. My gummy knee still plays up from time to time, but I have held off on the recommended arthroscopic surgery for now and maybe I will never have to have it. Burning feet, one of my early symptoms, rarely occurs, ditto pins and needles in the hands and fingers. My dentist rarely sees me and I was his best root canal patient before! Just shy of four weeks ago, I watched my dear mother die of COPD brought on by autoimmune disease. On the final day of her life, cancer was diagnosed - perhaps from the cytotoxic drugs, perhaps from the scarring in her lungs- we will never know. She was determined that I do not go the route she did and that I stay on the MP as long as possible to get well and not suffer as she did. I will honour her memory by doing just that. LFT done today - no significant change from a year back! Yippee! One of the tests showing lung volume was better, one was a bit worse, but apparently only because I have low hemoglobin due to the anemia of chronic disease. So, I have not deteriorated and my pulm, she of little MP faith, never mentioned the P ( prednisone!) word once!! She wanted to do another chest CT, I told her I wanted to hang on until next year in Spring. No problem there. She will see me in 6 months for a spirometry test and that's it. Because my pulm visits are normally stressful for me, when she took my BP, it was a healthy 100/60 !!! I left her office with a very definite spring in my step! |
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Elisabeth Health Professional
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VERY encouraging! Thanks for sharing Kas! Elisabeth |
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Freddie Ash Member
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HI KAS & ALL This is Fred in WV. Kas said - "MY DOCTOR USED TO SAY SHE HAD NEVER SEEN ANYONE WITH A PROBLEM AS BAD AS MINE," reminds me of what my doctor in the 1980s once told my wife, "I NEVER SAW ANY ONE WITH SO MANY THINGS WRONG AS HE HAS." So I just kept on pluging along looking for a cure back then. Two years ago, after I started the MP, a man that I have known since about 1978, he made the following statement, "I ALWAYS SAID THAT IF THERE WAS A CURE OUT THERE FOR SARCOIDOSIS, YOU WOULD FIND IT." I had told this man about the cure of the Marshall Protocol. Thank you Dr Marshall and all the staff here for that cure. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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eClaire Member
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I have just recently noticed the following improvement. For years (even before becoming totally disabled), seeing the "Warning" on a DVD or any sign that might say "warning" or an equally alarming word (e.g., "stress," etc.) would put a scare into me even when I knew what the warning was about and had no reason to be scared. It seemed like such an irrational fear, but I would have to look away at the start of a DVD, etc. Now, DVD warnings and other occurences of these words mean nothing to me (at least at the moment...the fear may return later for a while as I move into 3-way combos). However, right now I am enjoying the relief of not being ambused by virtually nothing. Claire |
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Dody Moderator 
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see also MP while working: One other happy milestone to report, unrelated to work: My hair is coming in much more brown than grey, more brown than in a decade or more. I'm 63, and my hair color's coming back!! Yay, MP! I've been promising our 24-year-old son that I expected to be getting more healthy on the MP than I've been in years. I believed it--but now I REALLY believe it. All best, Dody |
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Juanita Member 
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I have less brain fog. Prior to the MP, I couldn't follow a thought to its finish. Couldn't read because I would forget the beginning of the sentence before I reached the end of it. Regularly got lost in my own 1100 square foot home. Often couldn't remember my own name. And now I'm mentally well enough to start college this Fall. Sadly, my MCS hasn't lifted enough for me to go, but that will change with time. |
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Jeannine Health Professional 
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I was very skeptical of the Mp and had many of the questions and doubt Pre Mp ..I never thought I would be at this mark in the journey! TWO YEAR MP BIRTHDAY ..Doing really good.. morgellons symptoms almost gone, Depression (suidical many times) none..only occasional herx, chronic sores gone, horrid sleepiness GONE, Eye sight-no longer need glasses, PMS getting better/changing, Panic attacks gone, negative thinking gone, hair not falling out, sleeping refreshed-the best it has been in my life, I feel bored a lot versus pre Mp I was to tired to get bored, I no longer feel toxic and like I want to die, My outlook on life is totally different, I am dreaming and making plans and thoughts of the future, my relationships are better, I can handle stress much easier, Skin is the best it has been in my life no more cyst acne on my face monthly, purple weird mark that appeared on abdomen gone, memory improving, seizure like activity gone, food sensitivities gone, eye floaters reduced greatly in size, stiffness in joints greatly improved, FM pain over greatly improved, throat glands rarely sore, low grade temp gone, wart on foot gone, my self esteem is coming back! I missed me and now I am back. Slowly like a beautiful butterfly.I never thought in my life I would write any of that. I was as skeptical of the MP like many of the newcomers/outsiders. I still have fatigue, pain and brain fog to clear but I am only at the two year mark and have been taking the MP slow. If this is all I get which I doubt I could live a happy thankful life. I can only say that if I ever have a son I have decided I will name one Trevor and the other one George ( after Georgeinrolla who brought me to take a closer look at the MP after contacting me after he read a newspaper article I was interviewed for about Lyme Disease). I vow to dedicate some part of my life to helping others with this life changing and wonderful science. Last and not least my other thank yous go to my doctors who listened and tried to help me with the best of their hearts and knowledge. God bless me with two wonderful ones! They have sustained me in my pre MP hellish horrid life! Now time to make a difference for others...Thank you also to all the others here words cannot express your help and kindness! If your in hell like I was.. remember one day at a time and you will get there! I am even thinking of what I will do for my first low key post MP job. Thank you GOD! Jeannine |
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Deb Grabetz Moderator
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Jeannine, As a co-MP'er who feels I've been to hell and back over so many years too , reading your post truly brought huge happy tears, for YOU, for ALL of us!  Such a powerful post, I hope that every newcomer that comes to the MP will have a chance to read your post...because it's true, skepticism can get the better of us, I could not believe that I would ever be well, even though I had great faith in the MP from the beginning. With perseverence and the MP, we rock!Namesakes, Trevor and George, what an idea! God Bless you Jeannine! Hugs, Deb |
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Juanita Member
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Wow, Jeannine!! Wow! Thank you for this post! And congratulations! |
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caroldeleah Member
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Congratulations Jeannine!! My daughter will hopefully begin MP before fall and we look forward to her "return to health". It is so encouraging to read everyone's stories. So you are a former resident of Winnipeg also (does that make four of us now?) Brings back old memories! I actually prefer that climate -- fewer muggy days in summer and no slushy winters -- means the skating rinks in Assiniboine Park and St Vital Park are open from November through March!! Anyone else want to reminisce about Winnipeg? What did you all do for fun up there? Where did you like to shop? Where did you work and what was the reason you moved away? Do you ever go back to visit? What are the pros and cons about living in Canada vs US? What schools, if any, did you attend there? Then again, maybe looking ahead is what we MPers would rather do? Manitoba needs their first MP supportive physician (for all my relatives!! ). Maybe someday I'll be able to tell our story to my doctor friends up there, eh? All the best, Carol |
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Jeannine Health Professional
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Thanks to all of you! In the peg, eh?...I loved the parks, going to lake winnipeg, they were all my favorite...I miss them! I miss the cold now that I am on the MP. I do not go back to visit. However I have very fond memories and would like to one day. I think looking in the past when one is ill is like taking a vacation of sorts..well if your thinking good thoughts LOL. I still find myself looking at others who were very successful professionally and use to be jealous...well I still am a bit but not nearly as much as when I thought I was going to have live disabled all my life. Three CHEERS to the MP. I think I will name my two girls Meg and Barb You all take care and HUGS to each of you! |
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expate Member 
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Thank you all for sharing. It gives great encouragement to see positive gains but also how very brave people can be. I've only been taking Benicar for two weeks, but I have been limiting D and exposure to light since April and had noticed changes even with that. So recent, unexpected improvement (and this is a little strange, but here goes): I had a small rough patch of skin at the very top of the back of each leg. Aussie Barb referred to this same thing in her progress report as the "seating area". They develpoed maybe three or so years ago. I just figured they were callouses from sitting. Well, they're gone, just like that, in the last week. I didn't have any sensation of itching or stinging while they were there or while they were resolving.Also, yesterday I started experiencing pain in one of my finger joints that is twisted. It has slowly come to that shape but never with pain, only occasional itching. Now it hurts to bend it and to touch it. But I take that as a good sign that some healing is happening in there. Cheers, dette |
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eClaire Member
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Before starting the MP, although I sometimes had dragging around energy (felt like walking death) for about 2 to 6 hours some days, I could not stand or sit up for any length of time. For example, even reclining on my recliner was limited to about 10 to 20 MINUTES at a pop, which is where I would sit to eat my meals when not too sick. (Most of the time even a six inch wedge for the bed left me feeling unrested and so could not be used...forget elevating my torso slightly for the GERD that was causing me to lose my voice.) After about six months on the MP I could recline in my recliner for as many as 8 HOURS at a time! Major improvement. (Of course, I no longer had the dragging around energy, as my neuro IP was pretty intense, which made walking more difficult. I didn't start getting more than about 20 to 45 minutes of that until about 8 months in and it is really variable, although usually the quality of the energy is better.) My vision improved when I had my eyes tested after 16 months. The best improvement, however, has been the disappearance of minor urinary incontinence, which doesn't feel so minor when it is happening to you. That improvement showed up about 8 months in (although it does flare for a couple of days a little here or there). And I haven't minded one bit dropping 40 pounds with essentially the same low carb diet I was on pre-MP, with the big exception of having got rid of foods with added Vit D and folic acid on the MP. I think I've also had some improvement in my brain fog, as overall my reading comprehension seems to be improving slightly. Claire |
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Karon Member 
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Hello MPers, I had unexpected improvments right away with just no sun, no D diet house dark, and then benicar. My RA symptoms changed from the previous 10 months of severe suffering! I could not lay down AT ALL EVER. I would try to sleep in a recliner for an hour or two which just made me so anxious and depressed. Hopeless....This went on it seemed like forever. When I did get an attack (and I always got an attack) it lasted for 48 hours. Then I would get a "free day" and then the attack would go to the same joint oppisite side for 48 hours. The antiinflammatories and pain meds just made it bearable. They never made it stop or go away. I took these meds all day every day for 9 months.The only surprise I had to look forward to was which part of my body would be next!!! The only thing that kept me from taking my life was my children at first... and then finding the MP. I said all of that to show how bad off I was. In the first week of Beni I was able to LAY DOWN and sleep. Yes.. I had the hot cold flashes (blanket on blanket off) for two weeks. I cried at the drop of a hat and had to deal with hot flashes at any moment of the day. The sleep alone was worth that!!! Then my RA symptoms changed. It would only happen after my two day work week and only lasted 12 hours. Always on Mondays!! I made plans for this. Monday was my "sick day" I planned to do nothing but rest ,and pallitate the pain with my MP meds and pain meds. This worked for me. I welcomed the pain I knew was comming because now it meant something different! It meant that I was healing. I was able to almost eliminate the other meds. I still take them now, but only when needed. About 1x per week!! When starting the Mino, I was hit hard with the first 25mg and 50 mg and 75mg within the first hour lasting for 24 hrs. My neck, shoulders, elbows wrists, and hands would fall asleep and hurt so bad but be gone the next day. I also have a sore anus which is decreasing a little at a time. Now at the 100 mg of mino I have a "cold". This happened on the 3rd dose. But no pain!!!!! Today is monday! and for the First time I am not in any kind of pain or discomfort, just an annoying cough and runny nose almost gone! The MP has givin me my life back!! If nothing else, the mp protocol and meds have done more for me than any of the other drugs/meds did for me. I will be starting PH2 soon and I realize that the next abx will be involving more tissue. This may mean more RA pain for me for a while. Although I am a little anxious, I am ready, I will be healing! It will be interesting to see the new scheduels and changes my body will have. I hope to keep my 2 day work week , and I will shoot for that. For me EVERY THING has improved. EVERYTHING!! I would love to hear about PH2 from the MP elders. What changed for you? What was unexpected? What was the hardest part of this Phase? Maybe this should be a new topic???? So Very Happily Herxing in CA Karon |
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Dr Trevor Marshall Foundation Staff
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Karon, It is fine to discuss generalities of phase 2/3 in a general topic like this. The reason we keep discussion of medication/dosing out of public view is because people can get themselves into a lot of trouble if they try to progress without the guidance, and experience, of the moderators |
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Karon Member
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Sorry Dr. T. M I need more practice. No meds or dose to be mentioned again... even for phase 1 ! Thanks for the heads up! ; ) Karon in Ca. Last edited on Tue Jul 29th, 2008 03:14 by Karon |
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Michele MBK Member
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The antiinflammatories and pain meds just made it bearable. They never made it stop or go away. I took these meds all day every day for 9 months.The only surprise I had to look forward to was which part of my body would be next!!! The only thing that kept me from taking my life was my children at first... and then finding the MP. Karon, This rings so true for me, too. Thank you for posting. It was very interesting to hear your description of RA. I was dx-ed with RA last Sept '07. The pure hell I went through was unbelievable. I tried every kind of pain medicine and anti-inflammatory. The only one that helped the pain a little was Relafen and that started to eat my stomach. Fortunately, I made the acquaintance of an MP angel (John McD) shortly after my dx. In asking him about AP research, I asked him if there was further and current research following Dr. Brown's work. Boy did I ask the right person that question! This MP angel so very patiently explained the science behind my disease and a very different kind of treatment: MP or AP. While rheumatologists openly say they don't know what causes RA, and that they don't know why their drugs like MTX work, here was some guy from the internet claiming to know the cause and a treatment plan that works. His scientific description made sense to me. I tried AP first because it was more appealing to me on the no sunlight restriction side of treatment. But my immune system is not so blocked and the antibiotic without Benicar was sheer hell to experience because of the resultant runaway IP. It was beyond joint pain, it was full body pain. For example, a 50 mg dose of antibiotic gave me such a huge die-off reaction, I ended up in the ER. I had die-off in my lungs, ribs, muscles, and joints. With the help of an experienced AP doc, I backed way down on minocin. I was barely able to tolerate 3 mg of minocin. Throughout pre-MP I had trouble getting to sleep and staying asleep because of the pain. Although I looked forward to getting to sleep because it was the only time I was ever out of pain. The description list of life from this horrible time is too long to put here. It took a lot of planning to get ready for MP, as every MP-er knows! Other MP / RA angels joined in patiently answering my questions (Carol and Ival) along with the curemyth1 advocates. Within 3 weeks on Benicar only, I was able to get around a lot better! I was sleeping a lot better and longer. After my AP experience, I was terrified to start 25 mg of Minocin, but compared to the runaway IP I had on AP, this was completely tolerable. 50 mg of minocin has been conquered and today was my first 75 mg dose. Benicar is my friend! Hurray!! In December - May, I could hardly walk across my house, my kids and husband could not touch me because of the resultant pain from the hypersensitive state my body was in. Many times I was too sick to sit at the table to eat. Tonight I was walking and jogging around a track by my kids elementary school...after sunset, of course! It feels great!!! And I can participate with my family and give / receive great hugs again!! The changes / improvements I have experienced in a short time on the MP have been unbelievable! The biggest is the reduction in pain. Other than MP meds, I rarely take another pain medicine. I feel very very blessed. I thank God every day for Dr. Marshall, his protocol, my caring rookie MP doctor, my very supportive family and friends, and all the wonderful MP-ers who help each other along on this journey to recovery! Thank you so much, Dr. Marshall!!!!!!!! Michele Last edited on Tue Jul 29th, 2008 05:31 by Michele MBK |
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jrfoutin Research Team 
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Success stories has many, many improvements noted and should be mentioned on this thread for reference. Aussie Barb has cultivated a garden of delightful proof-of-concept share-the-joy discovery moments for years. See MARSHALL PROTOCOL SUCCESS STORIES Members Testimonies of their improving health >> individual LINKS here. Similarly, Amy Proal's http://bacteriality.com/ site is also has a wider individual biography scope per individual, under her "Patient Interviews" subsection. The thing that strikes me most is that it seems those on the MP are a very unique group that can't help but be grateful for the progress they see. They feel compelled to tell others about it. This is a phenom I have not seen elsewhere on any other boards that are identified with illness.Probably as much as the pathogenesis and protocol, this repeated compelling phenom to say more about the MP Proof, alone, needs to be noted. We orchestrate a powerful value about the truth of the MP in a remarkable way. It just does not have an equivalent elsewhere. I agree with Julia, too, that the scope of focus for improvement has included a wider range of options than I had initially expected would be needed to consider myself "well." Absolutely, bonus packages arrive frequently on the MP if one pays attention and notices. Just remember, many times the change is slow and subtle, "creeping up on you", just like Belinda said in What degree of healing is possible using the Marshall Protocol? Best to all--Janet |
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Karon Member
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Hi Michele, Funny thing...Ive been following you on your MP journey. We are so alike that it gives me comfort to see where you are at. I am not in the study yet but close to starting PH2. I have been excepted but no official invite to start posting yet. I am patiently waiting before I begin my new abx. Don't want to stay in PH1 to long due to clean places being dirtied by new invaders. How far do you think you are from PH2? I can't remember your last dose post. I will have to go back to the MP site to remember. Brain Fog!!! I know you are close to me in this journey. Did I already say that ?! Anyway.....an official HELLO GIRL Your MP Sis Karon in Ca. |
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Michele MBK Member
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Hi Karon, I understand about watching other MP-ers who progress at a similar time-frame with a similar dx. While we all have bugs, I do wonder how the CWD decide where to live to create different symptoms and diagnosis. It's good you are accepted into the study and great that your doctor has already started you in the protocol. Do they have other MP patients and experience? I'm the first patient with mine. I love my doc! He's pretty outstanding! As you probably have noticed, I'm moving slowly through phase I. I had hoped to start phase II before I have to go back to work (I teach) so the roughest transition would be over, but I had a set-back with strep throat and decided not to risk increasing while visiting family. It's hard to predict how long it will take to get there, but as long as I am tolerably herxing, I know I am making progress. This level of mino is currently creating a herx in my lungs, so I will be cautious. It's that "slow and steady" mantra that really sticks in my mind! It's cool to have an "MP sis!" Game on, woman! Michele |
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Karon Member
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Hello Michele, I too have an excellent Dr. It took a while to convince her to trust me(about 6 mo) But they (the whole office) can't even believe that I am the same girl that they knew almost 1 year ago. I am the first MP patient in this county as far as we know! I too am very courious as to why certain symptoms for different people and how the bugs choose. Someday with all the site data we may find an answer. Anyway.... a cat is a cat no matter the color right!? I have anxioety about teaching this year. I homeschool my 9 year old. I may not do this this year. We have alot of trouble with the public schools here in SLO county. Mostly Paso Robles where I live!! I am going to try for Montessori... You have all my respect I was not blessed with that talent or calling.Did your RA hit you suddenly? Did you have any other symptoms before the RA. I was blind sided almost overnight. Started with a hand injury at work and then BAMM! At least that is the TH1 symptom that showed its ugly face first. Hope you are having a pain free day too! Thats right mama...Game On! Love from your MP Sis Karon P.S. Forgive my spelling and grammer teach wish there was spell check!!!! |
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expate Member
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Unexpected improvement: I don't have to spend time applying mascara or other eye make-up. No one can see behind my NoIRs. I don't feel guilty about not spending hours working in the garden in 105 degree weather. Oh, and no exposed skin, no mosquito bites. They LOVE me. detteLast edited on Thu Jul 31st, 2008 01:27 by expate |
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Santa Monica Member 
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Michele and Karon, It's good that you are following everyone's progress. This is the best thing about the MP website -- to know that we are not alone in our journey. I was also concerned about going too slowly in phase I. It seemed to me that, like reading a good novel, the more I concentrate, the better. But as long as you don't stay in phase one for too much longer than the moderators advise, you'll be OK. The MP takes years to complete, and you have a long way to go. I am in the early part of phase II, and, on the advice of the moderators and others on the site, I am moving VERY SLOWLY so as not to increase my IP to intolerable levels. I am different than many people on this site in that I am not housebound and have to be outside for a large portion of every day days for work and life. You have to find the balance that works for you so that you can continue safely on the MP. As for improvements, my fiance says my hair is more lustrous, my hygenist says my gums are pink and healthy, my digestive system is working like clockwork again, and my skin is clear. I also have better breathing walking up stairs etc. with no cough. I no longer have to blow my nose twice a day. This is not to say my life is perfect: I sometimes miss a day at work to accommodate stronger IP (I try to plan for these breaks by adjusting meds so the worst of it happens on my day off, or I schedule a day off to rest and make up for it later); I get irritable, anxious and claustophobic in the sun with all my clothes, gloves and hat on; and I still have trouble falling asleep (I know this will get better). Thdere are other things I can complain about, but I'm sure you've read a bunch about it, but one thing you can be sure of is that you will get better, and if you're anything like me and alot of other people here, you'll start to notice it (for real!) in 6 mos. to a year. The improvements you'll make will be a miracle to you and those who love you. Hang in there. The journey of a thousand miles begins with one step. Mindy |
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Michele MBK Member
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Mindy, Thank you so much for your encourging post! I too will be back to work daily soon and am apprehensive about how my diseased body will tolerate the stressors my job entails. Your note about taking it slow to keep IP tolerable is my short term MP goal with full recovery being the end goal! It's very encouraging to hear you say you are working through this. What do you do?Karon, You are definitely incredible if you can teach your own child! My two don't take "instruction" well from my hubby or me and we are both teachers. So those parents that homeschool their children have my full respect!! I teach at a university, so unlike my hubby who teaches middles school, I have a different life stage. I taught younger kids with raging hormones in middle school and it sent me back into higher education after a couple years!!! God bless those who teach that age group! My hubby is a magnet for kids that age. They just like hanging out with him. To answer your question, my RA started slowly. Slowly enough that I didn't attribute it to anything but getting a little older or work related repetitive stress injuries. I didn't recognize it was systemic until it flared like a raging bull last Sept. Within 1 1/2 weeks I was in a full body flare and had difficulty walking and holding things. My chiropractor and very good friend told me that what I had looked systemic and I should see my PCP and tell him to do some blood tests. I had no idea at the time what she meant by systemic. The RF was 104. Sed rate and all other markers normal. I knew absolutely nothing about RA and didn't comprehend it for a long time. I'm not sure I really do comprehend it yet! At the RBF site, Lyme is discussed in detail and recognizing that I could have Lyme I had my blood tested at IGeneX. I do have some positive bands of Lyme, but not enough to be considered "Lyme" by our US CDC standards. It is enough to be considered Lyme positive in Scotland, however! Now I just know that's part of my overall "pea soup" of pathogens. I've had pneumonia 3 times and bronchitis more than I can count following multiple strep throats. Beta Lactim medicines were largely used in treating these infections. So, I'm sure there are many CWD critters that were born from those illnesses. I've also broken a hand and in a different accident was thrown by a horse and broke a transprocessor in my back. More immune stressors. Significant factors related to sunlight exposure and localized flares or fatigue were things I could relate back to after studying the MP site. Significant pain in my feet and fatigue occurred at the beach last summer. Hiking the Grand Canyon Rim in full sunlight led to feeling shaky and fatigued by the end of it. I thought I was nervous about missing our train connection, but now I know it was sun exposure. Over the last year or so, I stopped enjoying shopping. After about an hour, I'd get fatigued and just want to leave the stores and go rest. Now I relate to the florescent lights as being sources of evil energy. They still affect me very quickly. There are more sun exposure incidents that I now connect to disease, but I'll just list these couple significant ones for examples. Today, I hiked on a mountain trail for about 50 minutes. It wasn't steep but pretty rocky. I pointed out to my boys tonight what a blessing the MP is and how much better mom is doing now with this new treatment. It is really a priveledge to be a part of this monumentally important clinical study. It's certainly not easy, but worth it! Michele |
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Santa Monica Member
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Michele, I work in a flooring showroom that has lots of windows (I keep the windows near my desk covered), but I am often walking around with customers and can't avoid the natural light that comes in. I often have to remove my glassses to see color when I am helping my customers make their selections. On high IP days, my eyes are more sensitive to light, but there are days when it does not bother me too much. I also must go to the homes of my customers to measure etc. Usually on days when I take my glasses off too much I am exhaused by the time I get home. Using my "personal toolkit" helps. If you plan to keep working while you are on the MP, and, let's face it, many of us have to, slow and steady wins the race. It took some convincing by the moderators, advocates and other friends I have made on the site for me to embrace the idea that as my D level lowers, the threat of uncontrollable IP goes up, so I am moving through each step with great care. I know I am going slower than many, but I'm still getting better -- every day yields improvement. One other unexpected change: There are times when my sense of smell, which has always been good, gets so strong that I can smell things with such intensity that others are surprised by it. It goes back to normal in a day or so, but overall it has improved, I think, because my sinuses are clear! Take care, Mindy |
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Karon Member
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Hi Mindy, Nice to hear from you . Slow is the way to go for sure. I feel my pace is perfect for me. I also can work around my IP's at least in this phase. I work in a dark bar with no natural light and only two days a week. Perfect job for the MP I am blessed and so very greatful. I was a lucky one starting the MP. I felt better right away and started "improving" just as fast. I am early in my symptoms of RA. I was very cautious from the start and followed the MP guideline (No D Diet, No light, always NoIRS and lay low) pretty much to the letter. I know this made everything so, so much easier. I read so many posts from people that had a harder time because of light/sun exposer.I can't wait to see what IP surprises are in store for me that have been lerking under the surface for years. Phase 2, I think will show me. We are not that far from eachother. Maybe some night we can meet in the future for an MP celebration I know there are a lot of others close to us here in Ca. too! Hope your IP's are all tolerable! Nice to meet you with love from another MP Sister Karon in Ca. (SLO County) Michele, I can look back now too and see when I had way to much sun. Gardening for 8 to 10 hours, no gloves in clay soil (OCD maybe? ) Long days at the beach Too much stress! Bad relationship way to long. High D content foods as well as D supplements . Seafood, sunflower seeds, muchrooms Egg Yolks, and Mayo where my main D foods for the last 3 years. OOPS!!! I too had a high a RNA factor this year and for years a abnormal white blood count and protein in my urine. Never treated just a "hmmmmm" from previous Dr.'s . I also had several UTI's and kidney infections for the last 8 years after my urgent C-Sec. I suspect I will be revisiting this as an IP while in PH 2. I am ready to anyway. Your husband is a hero too! Will he be going on the MP? My daughter 24 and my son 9 will both be going on the MP in the near future. Me first so I can help them with confidence and ease. Even my ex will be MP-ing by next year! July flew by like it was one day. School is right around the corner ! Hey!!! I know...You and your family can move here to Paso Robles and open a Montessori school so that I can place my son with loving teachers that understand the MP. Its all about me ya know . This would make my life almost perfect!!What do you say? When are you comming???? LOL Have an awesome RA free day Little Mama With love from your MP Sis Karon P.s. Game still on! |
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eClaire Member
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Unexpected improvement.... Today I remained standing while putting on my socks (that is, I didn't sit on a chair or the bed). Sounds simple? This is the first time I have done that in about seven years. Even the idea of balancing on one foot took too much energy before. Claire |
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Juanita Member
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Speaking of feet! Thanks for reminding me, Claire. I used to have such bad splits on my heels, I would bleed into my socks and walking was painful when that happened. Now I rarely have to even scrub the dead skin off my heels. Which, of course, makes me feel prettier. I also have WAY less bowel gas and I no longer clear a room with the family screaming ewwwwwww! That also makes me feel prettier. |
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eClaire Member
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Juanita, What you say gives new meaning to the saying, "Pretty is as pretty does." |
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natalie17 Member
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This is going to sound strange but I really wanted to share it - Today I feel happy. Now I've always thought I was a happy and positive person - so has everyone around me, but today is different. I woke up with this huge excitement for life. I havent felt like that since I started feeling ill in early 2005. It's like I didn't realise that there was some higher state of happiness that could be acheived - and now I am there. It is a fantastic feeling. I imagine in time I will feel the same about my health - I will get to 'feeling good', then reach 'feeling better than I ever remember feeling' as so many success stories report. The future is definitely exciting, for all of us |
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Deb Grabetz Moderator
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Nat- It makes me happy inside just reading your post! I'm 51 and when I start feeling sorry for myself (and yes, sometimes I do!) I'm able to quickly put aside these negative thoughts by thinking of someone who is young, as you, and just starting out in life...You deserve the wellness to live a full life and I know with the MP, you will get there! Keep that happiness flowing... Now, for a post in this thread...I just realized something that has disappeared *magically* since I've been on MP...Before my dx, my sleep was interrupted sometimes 3-4x a night with sleep apnea type symptoms. I would *startle* myself awake, as if I either had stopped breathing or could not get enough air. My pulm doc was going to send me for a sleep apnea study but of course, after a period of time on the MP, this disappeared. No surprise eh? It is always so exciting for me to realize "another symptom has left the building"!!! |
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Juanita Member
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As we all pause for a moment to imagine Dr Marshall dressed as Elvis saying, Thank you, thank you, very much! You've been a wonderful audience. |
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Deb Grabetz Moderator
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Juanita Member
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My irregular heartbeat, that had stuck with me since surgery when I was eight, is gone. And this last set of potential skin cancer spots that were removed are the first set since 1998 that are completely benign. That one makes me do the Happy Dance. |
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Kas Member
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I also have happy news today. Doc just called with the results of my annual physical,and kidney function has improved quite a bit from the last result - eGFR is now 62 ( had been down to 46), creatinine is now 89 from the 100's- she called this 'terrific' news!Liver as usual, but half of what the highs were. Cholesterol - well, it could be better - good cholesterol is too low, bad is borderline high. I am sure it will improve, though as I progress. Calcium normal,lymphocytes normal, anemia still present,but we do not worry about that. I am the healthiest sick person around! I'm going ever so slowly, but I AM making progress. I feel like celebrating withall of you here! Last edited on Fri Aug 8th, 2008 21:40 by Kas |
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eClaire Member
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Kas, You are my inspiration, as I am struggling with kidney issues myself right now (GFR down to 42). Yay! for Kas!!! Yay! Claire |
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Deb Grabetz Moderator
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Kas, Congrats! Let's throw you an online party....  The Party is Here for Kas   On a very serious note, when I read of success like yours, it is like hearing the news for myself. It is amazing to me how important others progress becomes, after you realize the patience, work, self sacrifice and complete dedication that goes into getting well at this level, from being on the MP yourself! Good for you Kas and may your reports just keep on improving... ....as you *walk the red carpet* of MP! Hugs to you! Deb |
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Elisabeth Health Professional
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Nat - REALLY glad to hear about the "happiness" thing. Right now I wake up feeling "hit" w/ a tremendous amount of anxiety, so I'm REALLY looking forward to being "hit" by HAPPINESS!!! So glad 4 U . . . ! Deb - U'r funny! I'm 43 and looking forward to lots of things exiting this bod. too! New reportings for me: I've noticed of late (this sounds SO weird) is that my ear canals are getting larger; that's right! As a child I had multiple cases of "swimmer's ear" (ear infections) and sometimes "double" infections. Guess I was trying to collect some of the pool water in my ears! Doc's used to tell me how small my ear canals were and I believe now it was from chronic inflammation there (swelling being one of the sx's of inflammation).It seems also that my left elbow tendonitis is resolving. I used to have to "pop it back into joint" multiple times a day from Spring 2006 on. Thought it was b/c I'd damaged it pulling a patient up in bed or something, but now it seems that it was probably due to inflammation; the BBB (Big, Bad, Bugs) were settling in muscle groups of my left arm/shoulder/neck causing swelling and the push/pull of it all caused my elbow to go out. I now have range of motion when turning my head to the left that I've not had since I can remember as a child; i.e., my left neck was always "stiff".... mE |
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eClaire Member
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mE, I've noticed the same thing about the size of my ear canals. So now when one or the other swells on the MP, I know it is more IP. It's so funny that you can live with something for years and think it is "normal." Oh I love BBB instead of CWD!!! You ought to post that on the MP terminology thread!!!Claire |
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Kas Member
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Thank you SO much, ladies, for all your support and encouragement. I could not have my cyber party with nicer folk! It is quite amazing how good results can lift your spirits, isn't it? Claire,I know how the kidney issues can become a real concern for everyone, but hang in there, and things will get better. I am sure I will be going up and down with kidneys with each new dosage, but at least my doc can now see that low numbers are not permanent. I am also lucky in that I have a dear friend who is a specialist kidney pathologist, and he is totally au fait with the MP and is able to let me know when my results become too worrisome for even him! I find that being on Beni every four hours during the day, is beneficial and trying to raise my BP a bit with more fluids/salt, often helps. Now, I hope I can get through my Aug 18 colonoscopy on the Beni,but I think I may have to stop it for a few days prior due to my low BP. The docs will be too nervous to sedate me with my numbers,and no way is anyone shoving a hose up my behind when I am awake!! Have a great weekend, everyone and enjoy the party! |
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Elisabeth Health Professional
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Kas, I think they refer to the hose up your behind as "the ol' tube up the exhaust pipe"! I struggle w/ low b/p too now that I'm on the MP and DO LOVE my salt - ummm! Hope it goes well for ya (the tube thingy). Elisabeth |
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expate Member
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Kas, Just my experience with colonoscopy (and this was pre-mp)... they had trouble giving me intravenous sedation because of trouble finding veins. Well, yeah, after all the cleansing, you're pretty well drained of fluids. So whatever you can do to keep hydration going during the purging process, do it. Finally, after 2 or three attempts and two different nurses, they found a vein. Then all was well. Odette Oh, and it's not so bad then. I had conscious sedation and voluntarily stayed awake during the procedure. I watched the video as it was being done and listened to the doctor's commentary. It was interesting. OK, it was interesting given the given. Not to worry. Last edited on Sat Aug 9th, 2008 05:05 by expate |
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Deb Grabetz Moderator
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I've had an interesting symptom return recently....so I guess this could be an unexpected improvement! As a young child I started *scratching my throat* with my tongue. It drove my parents crazy as it sounds like a noise a  would make! This continued through adulthood although my husband was much more patient with my crazy habit. All along I thought it was allergies! The urge to do this went away for many years and now since my last increase with abx it has returned! I was surprised to *catch* myself doing this...and has me believing that this disease goes much farther back in years, than I realized!Anyone else do this serenade????Deb |
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eClaire Member
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Oh Deb, In my twenties, I used to rub my nose so much that my ex-Y would make fun of me by rubbing his nose at me. This stopped and I now find myself doing it again over 20 years later. Yes, I think returns of these old symptoms show us just how far back these symptoms go and that we are making progress on the MP! Claire |
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expate Member
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Wow, I used to do that too, rub the back of my throat with my tongue. It doesn't make too much noise though. I currently have periodic nose itching. I thought it was just that my mom was thinking of me. Um, wait she died 40 years ago. dette |
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Deb Grabetz Moderator
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dette, Whenever you're ready we can serenade together...     p.s. Claire, maybe you could play the  to accompany us! We could start a band...we need a *name*!!!!! |
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eClaire Member
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Well, I have my Dad's old harmonica, but I never learned to play. However, just making the effort to play the thing would give me a reason to have my hand up near my nose where if would be, well...handy for rubbing!!! Claire |
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caroldeleah Member
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You guys are the greatest! Keep my laughing! I was thinking.....my daughter could join you on the keyboard (maybe not--that takes two hands!!) BTW She started benicar 2 days ago and despite lying down while watching the Olympics and despite not doing the stretches recommended by her chiropractor; this morning, she had no neck pain, which she came to expect daily . Just the beginning......Carol Last edited on Mon Aug 11th, 2008 22:19 by caroldeleah |
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natalie17 Member
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Deb... I do that too! & I sound like a pig too! I actually get complimented on how good my pig impression is, haha. I tend not to tell peopel I'm not trying to do a pig impression.... & Carol that is fantastic news about your daughter . I know what it's like to have bad neck pain so I did a sigh of relief for her just reading that! |
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JanEE Member 
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Deb, what do you mean being confused by posting pictures? You are already the queen of picture posting. Do you go through all the steps that Natalie wrote out? Jan |
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DNStog Member 
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Carol...45 years of neck pain disappeared while I was in the Benicar only phase. A whiplash suffered in a car accident as a teenager left me with frequent neck pain, especially when stressed. With the exception of one short very mild period during Phase III, I've not had any more neck problems. In addition, I can move my head completely from side to side...used to be stiff when turning head to the right. --Donna |
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Juanita Member
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Holy Hanna! I had forgotten that! My fella, Martin, used to do that throat scratching thing and I just about left him in the first summer of our marriage over it. Every rag weed season that noise comes back like geese returning home at the end of winter. Honk! Honk! Honk! Oh, the fights we had about that! What a silly thing to fight over, eh? And this year? NOT ONCE! And all I noticed was that his allergies were better. If you hadn't brought this up, I wouldn't have remembered. And between us... I used to do it too, but I grew up with fussily mannered parents so had to learn how to scratch without sound. Martin grew up with farm folk where bodily noises were understood. Which is good, because I have bowel gas IPs that are very noisy!! |
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eClaire Member
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TMI |
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Deb Grabetz Moderator
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You two just keep me laughing.....they say laughter is the best medicine.... Well next to the MP, of course....and if that's true, you both are helping me heal...THANKS! Bowel gas, for the love of pete...If I'm lucky enough to get back to work, you are not welcome on my plane! xoxo   |
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Adrianne Member 
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You THREE are keeping me laughing!! If laughter is good medicine, we should all be well in no time! Last edited on Thu Aug 14th, 2008 02:41 by Adrianne |
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Maureensew Registered
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I do the throat scratching thing too!!!!! I use to do it when I was a teenager and it would drive my sister crazy. I shared a room with my sister and when we would be going to sleep she would yell at me to STOP IT!!!! I wouldn't even be aware of it. I continue to be amazed at the similarities with odd symptoms that exist with this TH1 disease. Each step like this adds more certainty that I am on the right path to renewed health. Blessings to all! Maureen |
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expate Member
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I had to alter a pair of my daughter's jeans which involved ripping seam with some heavy stitching. The last time I wielded a razor blade for such work, I couldn't finish. My hands cramped so badly and then just lost tone. Well, I have one happy daughter! And one happy me! My hands are working for me again. dette |
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kenc Member 
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My dentist is going to take pictures next week so that he has a record of the amazing improvement in my gums - they're growing back! My optomitrist has given me a new lower prescription - 1 diopter less for myopia. The arthritis in my hands has disappeared. Most of the psoriasis has disappeared. Now I'm waiting for the diarrhea, anemia, low energy and low weight to vanish. |
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Juanita Member
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Gums growing back. Yay! Both my parents had to have several gum surgeries and mine started disappearing in my twenties. Tooth and gum care have always been a big deal for me in the hopes of avoiding what my parents went through. Plus, I had to have twelve teeth filled when I was thirteen, so paranoia has been my friend for thirty five years. I've read of other people's teeth and gums responding to their MP, but mine has been slow in that regard. I just passed the one year mark and only last week did I begin to notice that my gums are looking healthier and... I think.... yeah, I think there is more gum. I keep going to the bathroom mirror to peek. |
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Deb Grabetz Moderator
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dette...Now that just brings on big happy tears from me...to you Ken, I've experienced some varying IBS with my sarc and it's not fun, surely nothing close to what you've been dealing with...but good to see that you are making progress with many things....full sail ahead! |
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Jon Member
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As a RA sufferer, with alot of OA from my RA, the Benicar blockade immediately took 99 percent of my Joint pain away. It was like magic. It had an amazing anti inflamatory property for me. I wonder if people not on the MP who take an ARB realise thier getting a double benefit..lol. Jon |
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Dr Trevor Marshall Foundation Staff
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Jon, people who are not aware of the MP science do not take Benicar in a manner which gives palliation - in fact, for many of them, once-a-day dosing will make the pain worse as the symptoms wax and wane... |
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Markt9452 Member
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Ken - I didn't think it was possible for a persons gums to grow back. I've been told that doesn't happen. That's very encouraging and really amazing. Mark |
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Adrianne Member
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I just realized that the glands in my neck which had been swollen for many, many years are not swollen anymore! |
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Deb Grabetz Moderator
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Adrianne, That must seem astounding to see such a change! Yeah! My post today is a bit on the vain side  but my eyelashes are coming back and full like they used to be!!! I've always had these awesome eyelashes, that came with my bushy eyebrows...hahahaha! Of course the bushy eyebrows you just keep shaped up...so not a bad trade off! At some point there were even gaps on my eyelids...and before I derailed I was blaming it all on age...! |
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Adrianne Member
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Deb, you mentioned in one of your posts that the swelling in your glands was gone and that prompted me to check mine. Otherwise I might not have even noticed it! Great news about your eyelashes!! So encouraging! I'll keep an "eye" on mine as they too used to be long and full and they have been rather sparse for a long time.Adrianne |
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Deb Grabetz Moderator
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In the past I've reported *thickening* tissue in many different areas of my body. (To give some idea what it felt like would be a tight muscle, although it wasn't muscle!) Most commonly an area in my back, back of my thighs near knees, butt, and thighs seemed to be the worse areas. I noticed this long before I flared but didn't give too much thought. All of this tissue is now softened up with only one tiny area left, which runs along a rib in my back!!! Yesterday I had one of those days...I felt good all day...like myself, what I could remember during a good run, when there were no sarc symptoms! It was both exhilarating and scary for me...this happened a few weeks ago also, I had almost a full week of mostly wellness...it just came and then disappeared! I wrote to an MP friend that when I feel really well like that, it is like being a fish out of water. I've become so accustomed to being so completely sick, every single day for almost two years now, that when this healing shows itself I'm feeling somewhat helpless! I feel a bit like a child who has never been exposed to the world! ...or learning to take his/her steps after being unable to walk. It is truly the strangest thing to be going through, for someone like me who was always active and out in the world! |
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terrylmcc Member 
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OK Folks, Heres a new one. While watching television, or when I find something funny, and have to laugh out loud. In the years prior to the MP, I would have an automatic cough that would interrupt my laugh. Not just a soft cough, but a sort of coughing fit. Recently I have been laughing out loud, and shocked when the coughing fit is no longer there. Sometimes I do cough while laughing. But i would say there is a 90% improvement. So I'm going to give credit to the MP for this one. Anyone else? Best Terry |
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Deb Grabetz Moderator
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Yes, Terry (Michigan neighbor!) I have done this same thing for years. I've played Bunco with a regular group for 25 years and as long as I can remember when we start laughing too hard, I cough, cough, cough. It always seemed odd that I was the "only one" that coughed like this but of course, didn't know I had sarc until a couple years ago....Although I've only been on the MP for a year, it has lessened. I still cough but not as hard and often not at all, guess it would be safe to say your 90% improvement is a very Good observation |
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Elisabeth Health Professional
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This is a happy one: The other night I was sitting beside my husband and he said, "What are you smiling about?!?". I then realized that I was unconsciously smiling for no reason and couldn't remember the last time THAT had happened. I've been uncomfortable for so long that I think I'd gotten so I hardly smiled, even when there was a reason to do so; I am thankful - for all of us! Elisabeth |
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Michele MBK Member
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Terry and Deb, I also have coughed for years when laughing. It started following my first pneumonia 20 years ago. Come to think of it, that's when my first "rib pain" occured too. So glad to know this will get better! Did you have lung herxing to rid this? My "cold?" continues with productive coughing and I'd be much happier assured this was IP and ridding my system of CWD. Elisabeth, for months I didn't / couldn't genuinely laugh or smile. I had nothing left. Pain was totally overtaking my whole body. Now I feel an inner glow coming back. I can laugh and smile again. There's still much work for MP to do, the pain is much less, but there is more to be done. Onward! Michele Last edited on Wed Aug 27th, 2008 03:12 by Michele MBK |
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Deb Grabetz Moderator
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Michele, Yes, I couged and coughed after starting MP. Sometimes very productive. Within a few months I started feeling this new *depth* to my lungs that honestly, I could not remember ever having...It was great! There is still mild activity going on in this area, so I know the healing continues! Deb |
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eClaire Member
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I'm actually scared of the coughing everyone talks about. I used to get lots of bronchitis, my lungs would get hyper reactive, and I now have mild COPD, and as of yet, I've had little lung involvement even after 21 months on the protocol (even though I expected it right away). I'm trying to use your stories to make me brave when my time arrives. |
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Elisabeth Health Professional
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Rock-on 'MP Sis'!! (It's wonderful, isn't it?!?) Elisabeth |
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Elisabeth Health Professional
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Oops! Realized I didn't "address" above post - which was directed to Michele. Apologies, mE |
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Elisabeth Health Professional
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Another improvement I've noted of late is that within the past month or so I've begun being able to stand in the kitchen long enough to prepare one, and sometimes two, dishes for a meal about once a week, depending upon how long the prep. time for the dish is, and the amount of heat from oven, etc. Before I couldn't handle even the light necessary just to read the recipe/directions on the container, much less standing - or even the heat from the oven; I would almost pass out. YEAH!! E Last edited on Fri Aug 29th, 2008 15:53 by Elisabeth |
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Michele MBK Member
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Deb, Thanks for sharing about the coughing. Now as the rib pain IP starts kicking in and the cough is productive, it is more reassuring than disconcerting. I totally thought MP-ers were CRAZY before experiencing this myself when I'd read people HAPPY about herxing. Now, I understand completely. And I am happy that while I feel the discomfort of herxing kick in this afternoon I can feel happy about it because this morning was pain free and the herx fits the predictable timetable as set out by our outstanding research team! The best part is knowing that it will go away and not stay 24/7 and I am recovering health while doing so!! Elis, glad you are feeling stronger!!!! Claire, Thanks for the frittata, books and conversation! HAPPY IP everyone, Michele Last edited on Fri Aug 29th, 2008 19:42 by Michele MBK |
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eClaire Member
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This morning I was writing a TOTALLY BRILLIANT POST when all of a sudden the HGTV site appeared in my browser and my post was lost (you'll have to trust me that it was brilliant  ). I was posting not about me but about Michele MBK and HER IMPROVEMENT. On March 8, Michele came to visit me to calm her jitters about the MP. I wouldn't indulge her and basically said, "Youse take the leap and you land where youse lands." Or something to that affect. At any rate, the woman I met on March 8 came into my home with her shoulders rounded over in a protective manner and she slowly moved about as someone trying to protect a body in a lot of pain. Pain was evident in her face. Fortunately, Michele was in the half of MPers who feel better after taking Benicar (unlike the half who don't, which has been my experience), and the woman who came to have lunch at my home yesterday looked good. Good coloring, no pain etched in face, happy mood...the whole package. To top it off, after lunch Michele put on a little demonstration of her improvement. Jumping up and down (demonstration of the ability of her ankles, knees, and hips to take jarring movement) and she ran around my living room. Yes, we MPers love to relish in feeling better. Nothing could have made me happier. Here's to Michele's improved health and to all of us, whether we are the half who see immediate improvement on the MP or the half who have to wait longer, may we always remember just how wonderful it is to feel good, just how blessed it is to be alive and even relatively pain free. Blessings to all, Claire |
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Elisabeth Health Professional
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Sounds brilliant (and beautiful) to me Claire! Elisabeth |
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Sarah Jane Member 
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What a wonderful story! Thank you for sharing that, Claire. And yay for Michele's improvements! I can just imagine her running around your living room, lol. And I do believe you about being brilliant. How could that little emoticon lie? |
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Michele MBK Member
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May we always remember just how wonderful it is to feel good, just how blessed it is to be alive and even relatively pain free. Indeed, Claire, indeed. Thanks for sharing those moments. Anywhere I go, I DO feel blessed now to feel SO much better and to have been led to the MP by so many kind people. Michele |
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Freddie Ash Member
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HI eCLAIRE This is Fred in WV. Thanks from me also for that great story. You tell a great story also. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Deb Grabetz Moderator
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All, Into Phase II (six months now), I notice subtle improvements every week and then will just have something out of the blue that *screams* out at me! This happened to me last week. I've been quite inactive for almost two years now and so decided to do some stretching the other day, as I'd like to start some mild yoga soon. I've had quite a lengthy battle of IP in my hips during my MP journey, which came pretty unexpected. I could not believe I could have so much pain in a place that I wasn't feeling, before the MP. So to my surprise, I felt complete flexibility in my hips, return out of nowhere. I must have lost this ever so slowly. So slowly, that I did not even notice when my hips began to get so stiff. Exciting stuff here! |
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Elisabeth Health Professional
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Wow! I'm really looking forward to that day myself Deb. I used to be SUPER flexible (people would comment on how much so) and involved in athletics, but the past 5-10 yrs I've gotten so that I cannot even complete simple stretches b/c I'm so "stiff & rigid" and feel like I'll "crack" if I push myself at all.... So, "Thanks for sharing"! Elisabeth |
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Freddie Ash Member
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HI ALL This is Fred in WV. On exercising and walking, I walk almost every day for about one hour and do exercises for about 20minutes. I do a lot of ankle, legs, and arm & finger extecises due to a lot of stiffness in my toes, ankle & fingers. These seem to help. I have been doing them for about a year or so now. I can do 30 situps, two hundred arm movements. I even suprise myself at what I can do. I have tried to do pushups but my toes are to stiff to let do these for now, but I am working on that too now. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Elisabeth Health Professional
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Well then Freddie, I guess by the time all is said and done here we may well be calling you "twinkle toes", eh??? . . . yep, I imagine we will . . . . Elisabeth |
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Freddie Ash Member
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HI ELISABETH & ALL This is Fred in WV. Thanks for all the kind words. I do not know about being called "TWINKLE TOES" but I would like to be able to do pushups to help my arm strength. I would do chinups but I do not have any bar to do them on. I am still working on all of this. Some day I will have a way to do these things and I will be doing them every day. Thanks, I did get a big laugh out of you post. Keep up the good work and posting here. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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JanEE Member
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Freddie, I went through about a week during phase 2 where I could walk 2 miles each day, but that's all the longer it lasted. The energy just left me. Now, on phase 3, I'm weaker than I was then. I have a treadmill, but I only last about 5 minutes on it and that's it. I can manage some yoga stretching exercises. It doesn't help that I have a torn meniscus and a Baker's cyst on my left knee. I'm hoping it will eventually repair itself with the protocol so I don't have to have a knee replacement. Did you begin slowly and work up to all the exercises you do? How long did it take to reach this point? Your energy is awesome. I imagine that you'll be doing those push ups before long. Deb, I would love to have an improvement that just 'screamed' out at me. I'm trying to be patient though, keeping the very few fabulous days I've had alive in my memory. They keep me inspired. I recently began to drop some weight and got very excited until I went to the doctor and she told me it was probably the increase in my thyroid medication. So, I feel like I can't even count that as an MP improvement. But----onward! Jan |
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eClaire Member
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JanEE that you are in Phase 3 is a great improvement (you just don't know it because you are moving fast and haven't taken a break...at least I don't think you have). I'd love to be out of mod phase 2 and into phase 2 after nearly two years. It's all relative!!! Claire |
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JanEE Member
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Claire, I know you're right. It's just that (and you know this too) it can get discouraging sometimes. I feel reasonably okay enough of the time---just no strength or energy---and I'm 'herxing' more than in phase 2. Because of a mixup with my meds, I began phase 3 in the wrong way. Meg thought I should do phase 2 over again, but since I'd already started phase 3 I was reluctant to go backwards, so she said it was okay if I stayed at very low levels to begin with since I had been doing okay. I was so happy to finally be taking that combination of the three 'best' antibiotics that Dr. Marshall talks about I didn't want to give it up. So, maybe I've brought this on myself. I am going at a snail's pace, but I'm getting there. In the end, I'm sure after we each suffer from our own 'blips' here and there, we will all arrive at our destination---wonderful health and a new lease on life. I had kidney issues in phase 1 that made it necessary to stop the meds several times (a total of 9 mos.) so I'm reluctant to even consider taking a break now. I think that we're all anxious to get to the 'finish line', but it's true---there really is no rushing it. Even though I know that, I still find myself wishing I could, but it is what it is. I probably could use a break, but I don't want to take it. It seems nuts sometimes that we take so darn long at certain levels, and go a little faster through others. When you do get to phase 2 you might just zoom right through it. Jan |
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expate Member
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Jan, Sending you heaps of encouragement your way. I am lucky in that I have experienced benefit in the short 6 weeks (plus about 3 unmedicated/reduce D months) I have been following the MP. So, even when I doubt, I know there's truth to it. IDK, hang in there. Odette |
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eClaire Member
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Hey Jan, I wasn't suggesting you need a break. I was suggesting that if you took a break now you might discover that you feel at lot better than when you started. Your IP is high now and can be masking all of the improvement you've made. When I took a break, I'd been on the protocol for 14.5 months with very heavy IP (it is only recently that I've had IP the way a lot of folk describe it). It was during the break where I could see my improvement. (I needed the break because of kidney IP, which showed up only after the one year mark, but the break was instructive nevertheless, and like I said it was after a long period of heavy IP.) Your breaks were early and so you were not able to see much improvement. That's all I was saying: you're probably further along than you think you are. May you be gaining lots of ground on the route you've chosen. Claire |
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JanEE Member
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Thanks Odette, for your encouraging words. They are always welcome and appreciated. Early in the MP I did have a few, what I call, 4 star days when I felt about 30 years younger. It is the memory of those days that keeps me going sometimes and I do think that's all still lurking inside my body somewhere, just waiting to come out and play. Claire, I didn't think you were suggesting I take a break. I was just explaining why I didn't want to do it right now. Who knows though, I could change my mind at some point. I think reading about other people's breaks is kind of wonderful and gives me hope for the same kind of reaction. I understand that John is already feeling pretty darn good and I think he just began his break. I think if I take one it will be after I finish the main combo of antibiotics and a few other combos. I think that's what Julia, and a fews others have done also. I'm sure you're right, and I am gaining ground underneath the IP---it's just playing hide and seek. Sometimes, in a post or an email, it's hard to get our thoughts and feelings across when you can't observe body language and hear tone of voice, but we do manage somehow and I'm so glad we have this site. Jan |
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eClaire Member
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Jan, So we're on the same page then, eh? Speaking of 4-star days. I had a 4-star two-hour period 14 to 15 months ago. I felt vibrantly healthy, very connected to life, and very calm, at peace. I don't remember feeling that healthy as an adult (of course, it could have been just a relative sense of health which felt incredibly healthy given how poorly I've felt). The feeling was priceless. Claire |
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Freddie Ash Member
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HI JAN This is Fred in WV. Jan you said, "I WAS RELUCTANT TO GO BACKWARDS," never think of this as going backwards as long as you are still doing the MP as instructed by the moderators. Always think in terms as just another way of going forward. I myself when I tried to start Phase 2 ended up in the hospital with CHF for 5 days. But I got right back up on the "horse" as the moderators put me in modified phase 2 and look where I am now, in phase 3 since April 7. I was in modified phase 2 for sever months. My BUN & Creatinine got so hight my family doctor called my house and wanted me to stop the Benicar, but I never did. At one time my potassium got to high he put me into the hospital for overnight(it ended up 3 days) and he refused to give me a Rx for the benicar at the dose I needed. So I now seea an alternative medicine doctor who he said he was not scared to Rx it to me. I have been seeing him for about 1 year and 9months now. We get along great, even though he does push the "MORE VIT-D" but he does listen what I have to say about no vit-D. So I am teaching him more than he ever knew about vti-D. He even asks me to bring these vit-D to him so he can read them. On me walking, it took me a long time to be able to walk for more than 3 mins in the begining, but I keep at it so now I can make it for 1 hour or more and also do the exercises for 20mins. On the situps it was hard for me to do 5 in the being. Best is slow and study and just try to finish the race as per the moderators. I hope this helps you in some way, and remember that I am pulling for you. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Deb Grabetz Moderator
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Some exciting news came from my doc's office today with some recent bloodwork! Sed Rate (ESR)--which is a marker for inflammation has come down within a normal range for a female my age! Music to my ears!  12/06 Dx with pneumonia SED RATE -22 1/07 Dx with sarcoidosis SED RATE -48 4/07 Sed rate dropped to 38 (due to immunosuppresant Pred.)**Pred discontinued as of 7/07. 10/07 SED RATE- 38 8/08 SED RATE- 25 (12 months on MP) note: normal range less than 30 |
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expate Member
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dette |
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Michele MBK Member
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Yahoo! Way to go, Deb! Michele |
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Elisabeth Health Professional
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Totally AWESOME!! Elisabeth |
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JanEE Member
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Claire, here's to those priceless 4-star hours. May yours soon turn into days---at a time. Freddie, I meant to respond to your encouraging words and somehow the thread disappeared too low on the horizon. I should try to remember that our health is not a continuously upward trip, but that we travel over many hills and valleys, with a few crevasses along the way. I'm over my ratty attitude, for the moment anyway. We never know when they will hit, but I'm always glad when they are gone. I finally went outside last evening, for the first time in over a month, and did a bit of yard work. I even managed to carry some soil down to my backyard (it took several trips up and down the stairs) to repot a plant. It's a big plant and I didn't get quite finished, but will finish it this evening---and maybe even a few other things. It felt good and actually made my aching back feel better this morning when I got up. As far as the exercising goes, I need to adopt your thinking and just keep at it with a very small amount and build as I am able. 'Keep at it' is the key phrase here. Sometimes a few bad days will destroy one's beginning a new habit. Deb, Great news for you too. You are making such great progress with all your recent improvements. You must be flying high. Keep it up. Jan |
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Deb Grabetz Moderator
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Hi Jan, Thanks as always for your notes! Yes, I was so thrilled to see my Sed Rate move. It has not budged for months and it took me quite by surprise to see it was again normal range. This news came at a great time as I had a particularly rough week with IP....and so the bloodwork gave me something to about!Take care...! Deb |
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eClaire Member
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Funny about the SED Rate. It was a SED Rate of 1, which would mean I had no inflammation despite the pain, that got me searching online for an answer. It was that search that lead to the MP for me. Claire |
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Elisabeth Health Professional
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Well, I've been wanting to post here for at least a couple of weeks, but am just now getting it done! Over the past 6-8 wks. I've noticed a SIGNIFICANT improvement in my hypoglycemia, which I've struggled w/ increasingly over the past two decades. Once I started the MP it seemed that it worsened to the point that between it, my low blood pressure and IPR, I was literally UNABLE to fix my own breakfast in the a.m. I could hardly stand up for that long and was so weak and shaky besides that when I would try I would about pass out, having to lie down on a kitchen bench to "recover" between attempts. However, now I am not only able to fix my own breakfast but also that of my children from time to time; WOW! I was diagnosed w/ Tendonitis in my elbow shortly before I started the MP. It was so advanced that I was unable to carry anything w/ that arm, wore a brace on it at night, and it seemingly "popped in and out" multiple times a day w/ much constant pain. Now NONE of that is true; i.e, I have FULL use of it WITHOUT pain/discomfort, do NOT wear a brace at night and NO MORE of the "popping in and out" - at all. Then this a.m. I woke up and actually felt REFRESHED after my night's sleep - and it was only 10 hours worth. That's the first time in I don't know how long (???) that I can remember feeling that way upon awakening. Usually I feel "drugged" (even though I don't take any sleep meds) and exhausted. I wanted to record these "sightings" here for the encouragement of all - TO HANG IN THERE!!! I am so thankful to Jesus who I believe directed me to discover the MP in the first place - and continues to carry me through it, and also to Dr. Marshall for sharing it w/ us. I consider myself blessed and I hope this blesses others.... Elisabeth Last edited on Sat Sep 20th, 2008 20:41 by Elisabeth |
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JanEE Member
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I'm a little late posting about this, but right after my post above (the 12th), I had two 3 1/2 star days in a row. That's 3 1/2 out of 4. It began by getting up in the morning with no back, hip or joint pain which usually makes me walk like I'm a hundred years old until sometime in the afternoon. I was able to walk freely at my first step out of bed. I had energy and the ambition to things. I felt so good and got so much done. I was careful to pace myself though as I didn't want to overdo it. Then the third day it began to go back again to what it was. It was so wonderful to get a glimmer of things to come. While I've had moments, or an hour or so here and there, I haven't had a long spell of feeling good like that for over a year. Now I'm back to the morning stiffness and a lot of back pain and other IP, but I'm so encouraged. I feel like the good times are still out there waiting for me. Jan |
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expate Member
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That's awesome, Jan! OK, here's a kind of dumb one, but... I actually wore high heels last night without any pain not just last night, but more incredibly today! I don't think that's ever happened... which is why I rarely (like once a year) wear heels. But we had an event to get dressed up for, and I went for it. dette |
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JanEE Member
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Thanks Odette, and not so dumb---good for you for wearing the heels. I'll bet you enjoyed every minute. Funny you should mention it though, just now, and in this post. I haven't worn heels since beginning the protocol. When I first started phase 3 I felt so weak and fragile that I was nervous just walking across a level lawn---in flats! My balance was off and I was terrified of falling. The feeling also made me feel emotionally fragile and I just wanted to cry sometimes when faced with walking over uneven terrain or down stairs. When I had those two great days and I felt much stronger and more stable, the thought actually went through my head that maybe by the time I'm done with the protocol I'll be able to walk comfortably in heels again. I always loved wearing them. Most of the women I know who are my age have given them up completely. I don't need to wear the 5" spikes of the day, but a little extra height would be lovely. Jan |
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Deb Grabetz Moderator
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Elisabeth-- How exciting to read of your renewed energy--if even for a short time it is a very encouraging sign that things are changing for the better. Be prepared for more and more of those exciting *MP moments*!!! I've noticed myself when waking, I know what kind of a day it's going to be! When I had 10 days in a row like that last month, it just *WOWED* me! Jan-- I like that, your *star days*!! Energy is such a gift, isn't it, Jan? Very hard to explain to those who are completely well, what it feels like to wake up with energy, after dragging ourselves around, day after day, week after week. Wish I could bottle that *feeling* when my energy prevails! I'm so happy to read of your improvements...and it will continue to get better! It sure does catch us by *surprise*, a very nice surprise!Odette--How fun, your heels story...What color were they? I love, love, love shoes....so much that I even buy the photo boxes that are victorian decorated and categorize my shoes by style and color!! (I had also seen a very neat idea in a magazine, to take a picture of the shoe and put on the outside of the box. Of course clear boxes work for this too but just aren't as pretty to look at!) Oh...just thinking about it makes me want to go shoe shopping...I went through the same darn thing, when I would put on a pair of heels, even a slight elevated heel in the beginning of my illness, it totally wore me out in minutes. So I put away the heels for almost a year. I've been able to get to a couple wedding this summer and wore them successfully for a few hours. Good news for all..........! Keep those great stories of improvement coming... |
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expate Member
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Wow Deb, you are like my daughter. She has a thing for shoes. Because I've always had some issues with my feet (I had a foot injury from ballet), I've never allowed myself to get carried away over shoes. When I was shopping with my daughter last year, I saw these very cute heels that had "only" a 3 1/4 inch heel. I figured I could handle that. Well, before the other night, I'd tried once and was really sorry. It's funny that this little success can give me such hope. Oh, let's see, they're black, peep toe with an open lattice work leather bow. IDK, hard to describe, but cute! dette |
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eClaire Member
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I'm incredibly jealous regarding shoe fetishes and high heels being talked about here. I've not been able to wear heels since I got a not so large but very very painful bunion on my right foot at the age of 22 (when my Th1 illness really started to heat up). So I've been wearing flats ever since (except for one short heel that I saved for going out to dinner). Because shoe buying has had to be all about comfort, it has never really been fun and I tend to just buy brown and black shoes to wear all year round and wear clothes that will go with those colors, which isn't too hard because I am a "winter" (if you remember the fad of determining what your best colors are). Hopefully, the MP will take care of that bunion (at least the pain) and shoe shopping will become fun again. Hahahahaha ...wow am I really getting ahead of myself. * Claire trying to catch her breath here * I'm not able to be up for more than an hour at a time and so...I got plenty of shoes!Claire |
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Elisabeth Health Professional
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All this 'girl talk' is so fun! Things I've not thought about for a long time and don't do b/c I rarely get out - much less clothes shopping. I'm neuro herxing today and so it helps take my mind off of such. Jan - I can relate to feeling like crying b/c of being off balance and afraid to fall. I used to be quite athletic (including great balance) and the past few yrs couldn't BELIEVE how "teetery" I'd become. Last year I even fell in front of some new neighbors; we all laughed, but inside I was quite chagrined! . . . and I thought it was b/c I was "over 40"- ha! Odette - Thanks for sharing your heels story. Little things make such a BIG difference on our journey I think. Deb - Thanks for the encouragement; I awoke w/ tremendous anxiety this a.m. and have been feeling cruddy since. Yesterday was SO WONDERFUL and I am looking forward to more such times. Ten days in a row must have been unbelievable.... Claire - All I can say is that I CAN'T WAIT to hear about your 1st fun shoe-shopping expedition!! I believe w/ all my heart that it will happen. You're such a champion of endurance and perseverance - HANG IN THERE!!! Elisabeth |
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Knochen Moderator 
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My name may be on the lips of cursing husbands everywhere, but I'm gonna post these links anyway. When you are done with the MP, you can treat yourself! (and yes, my wife is a shoe freak of Imelda Marcos proportions) http://www.customshoes.net/catalog_women.shtml http://www.taylormadeshoes.co.uk/bespoke.htm http://www.lovelessboots.com/index.htm (USA) Heheheh, I'm so evil some days! |
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Markt9452 Member
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... just when I had thought the level of Estrogen in this thread couldn't possibly get any higher... That does it - I am going to go hang out in the Book Group thread now... http://mp-lifestyles.org/forum1/70-1.html |
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eClaire Member
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Oh, Mark, you slay me. HehHehHeh. Claire P.S. Mark click link here: http://mp-lifestyles.org/view_topic.php?id=127&forum_id=1 Last edited on Mon Sep 22nd, 2008 03:14 by eClaire |
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expate Member
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Why Knochen, I never knew... Funny. Actually, Loveless is where I go for my orthotics. Great to see them posted here. dette |
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expate Member
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Mark, are there any testosterone threads? We do indeed have the estrogen in full flow here.dette |
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Markt9452 Member
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I guess not - Maybe Dr. Marshall can provide a scientific reason for this? Maybe the entire website is suffering from some kind of hormonal imbalance due to Th1 inflammation? Anyways I have to go now - I'm late for the monthly meeting of the North American Butterfly Association...Afterwards I will be attending my weekly "Stitch and Bitch" with some friends. mt Last edited on Mon Sep 22nd, 2008 04:44 by Markt9452 |
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eClaire Member
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You know some of the most masculine men knit. Actually, my brother used to make clothing, backpacks, and bags out of old fatigues. He was quite the self-taught tailor. I've thought it would be great if someone started a non-fiction book group so we could have fiction and non-fiction running at the same time. Perhaps THAT is something you could do Mark? Claire Last edited on Mon Sep 22nd, 2008 06:07 by eClaire |
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Markt9452 Member
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Claire - In all fairness - The truth is I have spent years selling Ladies shoes - I am a former member of the North American Butterfly Association - and I am currently looking for a Navaho drop spindle with the intention of spinning my own textiles from nettle and hemp...No really - it's true... I was just having some fun with you guys... Sorry Knochen....Last edited on Mon Sep 22nd, 2008 11:35 by Markt9452 |
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Deb Grabetz Moderator
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OK you know what they say about what a good laugh can do for your health??? Well, the last few posts have certainly given me my daily dose...you all are a hoot! Claire, your mention of knitting reminded me of another airline story ...While I was in *reserve (*this would be underground crew used for coverage for call offs) I decided to spend time knitting scarves. My grandma taught me long ago, yet I had not knit in ages. Well, I remembered how to *cast on* but when I got to the end to *cast off* had forgotten the technique. Just so happened one of my newly found pilot friends who was sitting reserve with me, was a knitter--yes, it's a very true story and he finished off my first scarf for me!!!!!!! ...and you thought those guys could only fly planes.....  omg...just remembered his name was also Mark....hahahaah! It's true!!! |
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expate Member
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That's OK, we're going to crash your Elk Hunting and Fly Fishing thread and then go open a tailgate over on the Football Frenzy Forum.dette |
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expate Member
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Oooh, but Claire, I do think a non-fiction book club is a good idea. I intend to join your next one. Any thoughts on the next title? I just started reading "Cousins" by Patricia Grace, a New Zealand author. She was just here this last week, having been awarded the Neustadt International Prize in Literature. I'm not suggesting this title for the next book, but just saying it is very powerful. dette |
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expate Member
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Oh, and Mark, your search for the drop spindle reminds me of seeing a bent old woman, all in black, walking along a mountain road on a Greek island years back. As she walked, she was spinning wool on what must be what you're describing, a drop spindle (I never knew the term). A lovely sight.dette |
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eClaire Member
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Hey dette, There's a Book List that the Forum members came up with. I think we ought to select some from the list for a while before adding to it, but you are more than welcome to sign on as a moderator. One is needed. I am about to start Z for the first time and may well be down for the count for a while. SO IF YOU SIGN ON AS MODERATOR, THE CHOICE OF BOOKS FROM THE LIST WOULD BE YOURS! In addition to a non-fiction book thread, it would also be nice to just have a book suggestion list--both fiction and non-fiction--to keep those of us who like to read a couple of books a week entertained. A separate movie thread might be good as well. There are so many of us who at least read the Lifestyle threads, and so there are probably enough of us to keep those threads going. Deb, Funny story. I never could remember how to cast off. I am, however, going out to buy yarn and needles today to begin a project tomorrow--something to do when the emotional IP kicks in with Z. It has been probably 25 or more years since I knitted anything and I never knitted anything other than a scarf. (I'm starting with two scarfs, and then moving on to a receiving blanket knit on the diagonal so I can get lots of practice casting on and off.) So wish me luck! Last edited on Mon Sep 22nd, 2008 12:49 by eClaire |
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expate Member
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I started a knitting project when my first grandson was born (three years ago). I decided to make a patchwork baby blanket so that I could have fun and learn a variety of designs, but in very discreet accomplishable units. I'm a VERY slow knitter. I hadn't knit in over 20 years. Well, there are lots of details I could offer, but the project is in a basket in my closet. 1) I was just too ADD to keep count of the stitches and 2) my hands got so numb an weak, I couldn't keep going. It was really tough on my hands. Since I started the MP, the numbness in my hands is gone when I'm at the computer. I still have some wrist weakness on the right side. But I just don't feel ready to try the knitting. I fear the numbness will return. Scaredy cat, dette |
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Deb Grabetz Moderator
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Heh Claire, there are some really good *how to's* on the Internet, that will walk you through step by step, if you get stuck with any knitting techniques!! GL!! |
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Elisabeth Health Professional
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OK, this is my NEW unexpected improvement: YOU ALL ARE MAKING ME SMILE!!! (Thanks, I needed that!). You all are great.... mE p.s. I'm not sure I've ever knitted a stitch in my life; my only association w/ casting was rod 'n reels. How's that for "estrogen resistance" Mark?!? p.p.s. Go Knochen!! Last edited on Tue Sep 23rd, 2008 02:24 by Elisabeth |
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Markt9452 Member
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Great - I have inadvertantly turned this into a thread about knitting... ...and I didn't even get to use my "if the shoe fits" line yet... |
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Elisabeth Health Professional
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- - you know what they say, "Laughter is the best medicine!" They way I see it, I spend enough time each day working toward my health improvements that it's fun to "tend to knittin'" for awhile - so THANKS! E |
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Elisabeth Health Professional
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. . . but speaking of improvements: I just recalled that I am now able to walk around the block w/ my hubby from time to time, as compared to last Fall when I walked on the treadmill 5 min. one day only to collapse in bed to recover for 3 - days that is . . . . Yea, now that's what I call improvement! Elisabeth Last edited on Tue Sep 23rd, 2008 04:24 by Elisabeth |
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expate Member
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Markt9452 wrote: Great - I have inadvertantly turned this into a thread about knitting...You've got to let us finish knitting the socks before you can see if the shoe fits. dette |
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Deb Grabetz Moderator
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Elisabeth-- What great news to hear that you're walking around the block--It is such an accomplishment! ...and so taken for granted. That IS PROGRESS! My grandma called yesterday to tell me she was able to move her index finger about 1/4". She was so tickled, I could hear it in her voice! Had I not been through what I have, I truly can say I would not have understood her excitement...but I did...and was proud of her! |
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boggs1018 Member 
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Elisabeth, I can relate to getting so excited about taking walks again. My husband and I have been walking in the evenings lately--something I haven't been able to do since I started the MP over a year ago. Recently I even cleaned my house on my own for a family reunion! Woohoo! I sure will miss the help from my family when they see I can do it on my own again! Yay for small victories! Juli |
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stoneyhill Member
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expate wrote: Markt9452 wrote:Great - I have inadvertantly turned this into a thread about knitting...You've got to let us finish knitting the socks before you can see if the shoe fits. Wifey is a fiber artist. I call her a "Weaver", "Knitter" and "Spinster". She can turn out a pair of socks from the ball of fleece that comes off the sheep. Anyway, a few years ago at an auction I bought this funny looking machine they called a "Sock Knitting Machine". $35.00, I paid and now I see that they go for like $400.00 on the internet. Wifey didn't want it because she is a purist and this gizmo will turn out a pair of socks in like 45 minutes. One crank on the handle turns out a row all around. The guy that invented this machine didn't have time to go out with girls. It's got 2 sets of needles that go either up and down or in and out like the 'Wave' at the ball park. They go up and down and in and out through each other, picking up loops and pulling them down and then going up, whilst a latch hook drops one thread and picks up another. It's fun to watch. It's like turning the handle on a sausage grinder except that a sock comes out the bottom instead of sausage. I studied the booklet and practiced and even learned to turn the heel and close the toe but I have some kind of problem with the tensions or something because after I turn the heel and start toward the toe, one of the needles will drop a stitch and it makes a run like in a pair of nylons. Then I get to pull it all out and start over. I will get it eventually and then start to sell "Hand Knitted Wool Socks" at the craft shows that Wifey goes to. |
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Joyful Foundation Staff
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Ah, Stoney, you bring to mind Wallace and Gromit and the episode called A Close Shave! |
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Markt9452 Member
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Stoney - Are you wearing those lanolin laden sheep socks? Cause that could be baa baa baaaaaddd.... Last edited on Wed Sep 24th, 2008 04:54 by Markt9452 |
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expate Member
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Tell me about lanolin. It causes me grief. Is there some micro level scoop on it, or is it just a common allergen? Odette |
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Markt9452 Member
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Lanoline is a precursor of a steroid hormone [1a,25(OH)2D3] |
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expate Member
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Oh nooooo! I just got a new wool hat: (http://www.villagehatshop.com/betmar_beadazzled_downbrim_hat.html). It doesn't have an interior/sweatband so that the wool is right on my skin. Very uncomfortable. But it is beautiful and not nearly as uncomfortable as stilettos. I guess I'll have to fix it myself. dette |
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Deb Grabetz Moderator
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Odette, I have never been able to stand wool against my skin.....yikes!! Your post had me curious too about lanolin so I looked up some info on WIKI and found this...Interesting! I have used Oil of Olay products consistently over the last few years. Discontinued once I started the MP. The name given to the product 'Oil of Olay' is derived from the word "lanolin," a key ingredient, which was chosen by the inventor, Graham Wulff.[2] Using cosmetic products which contain impure lanolin can result in an allergic reaction in some people. Lanolin is often used as a raw material for producing *vitamin D3. *Cholecalciferol is a form of Vitamin D, also called vitamin D3. It is structurally similar to steroids such as testosterone, cholesterol, and cortisol (though vitamin D3 itself is a secosteroid). D3 ([highlight= #ffff88]cholecalciferol) is a chemical added to food as a vitamin D supplement. I hope that I have all of this D3 reported correctly! Deb |
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eClaire Member
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This is all very interesting. While I avoid lanolin products and am allergic to wool, I didn't start avoiding lanolin products until I bought a coat that had a lambs wool collar that was so soft that it did not make my skin itch. A baby could have laid comfortably on it. At any rate, after wearing the coat for about 15 minutes I would become extremely congested. This convinced me that lanolin was probably the offending substance and so at that time I decided to avoid skin care products with lanolin. Claire |
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boggs1018 Member
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Thanks, Deb, for the info on lanolin. I too am an Oil of Olay user on my face. Unfortunately that's where my sarc is, so I will discontinue it. I don't notice an allergic reaction, but it can't be good for my sarc if it has D3 in it. Yikes! Juli |
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stoneyhill Member
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Markt9452 wrote: Lanoline is a precursor of a steroid hormone [1a,25(OH)2D3]I only have one pair of wool socks that Wifey only makes me wear on special occasions. Otherwise, I thought that 25D was the precursor to the steroid hormone 1,25D. Unless you say that the lanolin is a direct precursor to 1,25D, in which case, it would be essentially fall into the same category as 25D. Which in my weak understanding is what they call 'D3') I don't know, just askin' |
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stoneyhill Member
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Wifey and I were discussing the wool issue over lunch. She tells me that man and sheep have been inextricably entwined since the beginning of recorded history. The nomadic tribes of pre-recorded history have been wearing and living (felted huts) in wool for as far back as anyone can remember. The Arabs even today, in that blistering heat and burning sun, wear wool to protect them from it. I understand that Th1 disease got a surge when man invented the bikini (which essentially got us out from under all our felted hats and longhandled underwear) and the Norwegian Bachelor Farmers never took their long handles off. The surge got augmented when .gov mandated the supplementation of milk with Vit D. All of this happened in the last 60 years or so. My question becomes.......Why, in all our previous history, have we been wrapped up in our woolens and still survived as a species? |
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Deb Grabetz Moderator
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Hi stoneyhill, That's a good question-- we may need to form a group full of MP historians to work on this one! Cotton dates back thousands of years B.C. so there were other fabrics worn. My guess would be linen, muslin and silk, etc have been around for a very long time also! "Scientists and historians have found shreds of cloth or written reference to cotton dating back at least seven-thousand years. Evidence of the use of cotton in the form of thread has been found in Pakistan, dating to about 6,000 B.P., although it is not clear whether the thread derived from cultivation or from wild cotton. The oldest discovery was made in a Mexican cave, where scientists unearthed bits and pieces of cotton bolls and cloth. Archaeologists have also found cloth fragments in the Indus Valley of India (Pakistan) dating about 3000 B.C. " Silk fabric was first developed in ancient China, possibly as early as 6000 BC and definitely by 3000 BC. Legend gives credit to a Chinese empress, Xi Ling-Shi (Hsi-Ling-Shih, Lei-Tus). |
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Markt9452 Member
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man and sheep have been inextricably entwined since the beginning of recorded history. The recorded history of mankind seems to involve perpetual warfare, slavery, epidemics of disease and the almost complete devastation of our natural environment including most of our forests, fish stocks etc.... among other things... Maybe we are on to something here... Sheep farming is mankinds oldest organized industry. Domesticated 10,000 years ago in Asia - however the spinning of the sheep wool only goes back to 3500 BC. Previous to that the fleece was used as a kind of tunic. The history of central Asia from 3500 until now is particularly interesting in terms of violance and warfare. There have been many violant events associated with sheep farming including... The highland clearance, US Range Wars, English "enclosing of the commons" Also the sheep we have now aren't like the sheep of yesterday - They have more wool now and less hair than they did before. They also have smaller brains. Did the domestication and subsequent "spinning of sheep wool starting around 3500 BC" have a significant affect on human history? - You betcha... Just my two cents... Trade those sheep in for some Alpacas - they are D free!! One more thing - The neolithic period that Dr. Marshall has spoken about in some posts started around 10,000 BC There is so much more to this - but it's way to controversial to even get into. Last edited on Wed Sep 24th, 2008 20:30 by Markt9452 |
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stoneyhill Member
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There is lots to this that I don't know. But........ I did get a call back from someone from a supplement company. Their ad had made it sound like they directly extracted the vitamin D from lanolin and I decided I better check with them as to what they meant. Which I got from http://tinyurl.com/47cj6p |
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Markt9452 Member
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Your right Stoney - It's pretty complicated stuff. I can't figure out how much 7-dehydrocholesterol is in the Lanolin. Ya gotta admit though - those Alpacas are a lot cuter than the sheep...  |
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eClaire Member
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...as long as I can continue to wear cashmire.... |
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Deb Grabetz Moderator
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Mark, You are so right these Alpacas, are much easier to *warm up* to!!! Deb |
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Freddie Ash Member
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HI ALL This is Fred in WV. My son has 2 Alpacas. But that is not why I am posting here today. Since we are talking about Lanolin, and it being loctions, I think it would be good to tell you all what I read in the last few months. It is about Glycerin being in the lotion. I have had some high glucose readings and have been watching it. The article said we could get false high reading if we do not wash our fingers before we do a finger stick to check the glucose reading if we use hand lotion with the Glycerin in it and it is still on your finger. This might help some one that is having problems and can not figure out what is giving them the high glucose reading. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Deb Grabetz Moderator
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Now, I may be getting in way over my head here but will try to explain this the best that I am able based on my research. Recently I went back to my eye doctors for a re-testing of my visual field, specific to my left eye. I had this tested in 2004 (before my sarc dx). In 2004 the upper left and right quadrants, along with a partial (approx 40%) of the lower left quadrant were affected. I lost this vision back in 1990 when I flared with what I now realize was neurosarc. My recent testing showed a complete clearing of the lower left quadrant! No surprise as I'm able to see out of this eye much clearer in the last six months. Now, the funny thing is my opthamologist has been telling me this is a pit in my optic nerve that will never change--and he continues to tell me this--even though my test came back improved! I am in no way trying to criticize this eye doc but why do they get so stuck in the mud??? I have not been able to see out of this eye, with no change for 18 years!!! Even without a test, common sense tells me that this eye has improved, a neuro improvement also possibly-- and it has only happened since I have been on the MP--!! It seems also that I have read that a true pit in the optic nerve only affects two of the four quadrants. So, this would not even have been a sensible dx to begin with, since three of my four quadrants came back affected. But what do I know????! |
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Aunt Diana Member
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I'm not sure if this will qualify as an "improvement" but I think it is. The area just below my neck (the area exposed by a v neckline) has been covered with a very thin layer of skin for years, with hardly any fat beneath it. It also has had a sunburned appearance...and in the first year or so of the MP I experienced a lot of IP in that location.....lesions, red and irritated skin (as if it had been badly sunburned) which, of course is impossible since I had been living in the dark for quite a while. Lately I notice that this area is much softer to the touch....it seems to have an added layer of fat and appears smoother and much less irritated. The skin is softer, smoother and less irritated. |
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Dr Trevor Marshall Foundation Staff
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Yes, the skin does become softer as the stem cells become uninfected and start doing their repair job again Look at my face and hands in the videos... |
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Adrianne Member
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Diana, That's a wonderful improvement and I am very happy for you! I also have issues in that area with thin skin and brown spots and blotchiness. I probably have a lot of sun damage there as I spent many of my childhood summers baking at the beach. Since I have been on the MP, small sores appear in that area from time to time. I am confident that healing is taking place. I am looking forward to being able to wear V-neck tops, with confidence, in the future. They're supposed to be slimming, you know |
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eClaire Member
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I don't know if I've written about this improvement before (and if I have please chaulk up my repetition to neuro herxing). Disclaimer: I don't know how much the following can be contributed to (1) my spiritual growth, (2) my absence from the world of work and most of the responsibilities of life, and/or (3) the MP. For over a month, I have noticed an almost complete lack of my internal critic. It has been wonderful not to hear any sort of yammering. No should of, could of, no self recrimination (although I still explore my role in interactions and such and accept responsibility for my role), etc. If this improvement is the result of merely being out of the swing of life (i.e., having so little to do because I am unable to do and having so few interactions with others), I certainly hope that its absence will make me instantly aware of it when I am well (wasn't too bad at that in the first place) and help me easily settle/calm it. Claire |
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magsmom Member 
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Claire, Wow,Wow, ( double wow !!), You so often inspire provoking thoughts for deeper self reflection. Thanks for sharing. Magsmom Last edited on Mon Oct 13th, 2008 04:39 by magsmom |
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Kacey Member
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A couple of unexpected improvements I have experienced are: the ability to breathe through both nostrils at the same time. I had been told by a doctor 15+ years ago that it was normal to only be able to breathe through one at a time. Now I know different. It feels like I get sooo much air now. Also, I had many illnesses as a child, in fact I was born sick and had to have surgery at 8 weeks old. Needless to say, I had antibiotics and D laden formula. Anyway, I had pneumonia twice at age 10, and multiple penicillin shots, but after I was well, and for my whole life since, it has always felt as if I have congestion in my left lung. When I get sick it always seems to to there. None of the doctors that have treated me since then have heard anything and have told me my lungs are clear. However, since starting MP, that feeling in my lung is gone. Completely gone. I wonder what it was. Some kind of bacteria I would guess. When I started MP I didn't expect these things to clear up. Nice surprise! Kacey |
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eClaire Member
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This is not an unexpected improvement and it may sound minor; however, if you are someone who started from where I started when I began the MP you will understand why it is such a big deal to me. Tonight I spent the better part of 5 hours sitting up in a chair without a foot rest and with no head rest. Before I started the MP, I could not recline in my recliner for more than 20 minutes at a time, and I couldn't lie down on a six inch wedge on my bed. Doing either left me extremely exhausted. Meaning, unless I was walking, I was lying flat on my bed. Often I ate two out of three of my meals each day while lying down. I am pretty tired tonight, but I was sitting up not reclining and not supporting my head. Claire |
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Dr Trevor Marshall Foundation Staff
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Julia .
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Claire, I know what you mean about the internal critic (Oct.12th). Mine however doesn't criticise me (which might be a useful exercise), but starts to niggle just as someone else answers me, anticipating their answer but putting a cynical twist to it. I have to take a deep mental breath to shut it up. This has spoiled many fine conversations with people I love - for me, but I'm sure nobody else would know. I thought it was some weird spiritual problem, but now know it's just another weird herx, and it's gone |
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expate Member
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Claire, that's positively inspiring. How wonderful for you to experience the benefit of all your hard work. Julia, interesting. I never would have pegged you for a cynical niggler. I have a few unexpected improvements, but time now to offer only one... increased bladder capacity, or something like that. I've never had bladder infections or trouble in that area per se. However, I had terrible uterine fibroids that physically put pressure on my bladder. The treatments I had for the fibroids (UFAE) fixed that problem. Or so I thought. Now, on the MP, I find that during my four hour shift at work, I go most days without having "walked down the hall" at all. I used to go to the bathroom at least twice in that same amount of time. I drink about the same amount every day, two club sodas and a cup of warm water (with my Benicar - pre MP, the water would have been cold). Also, while I do wake in the night, it's generally to take my Benicar. As a matter of comfort or whatever, I generally go ahead and go to the bathroom. But there have been a number of times I don't bother and make it through the night without a trip to the bathroom. Twice I have had IP in the form of bladder pain, something I never had pre-MP. I don't know if the increased bladder capacity is due to my bladder getting better, or if there's internal swelling of neighboring organs that has lessened and is no longer putting pressure on my bladder. Regardless, I spend less time taking care of that bodily function! dette |
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Pipistrelle Member
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Expate, I have bladder improvment too - used to have a cast iron bladder, but over the years with sarc had developed what I called hair-trigger urgency - and would often find that I lost control whilst undoing zips etc on trousers - and could finally understand why so many older people wear elasticated waists!!! So it feels like total luxury to be back to cast iron bladder again - some of my early IP was in and around the bladder area. Yay! Pipstrelle |
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Freddie Ash Member
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HI ALL This is Fred in WV. Here is my story on the bladder. Back in Feb 1982, when they were diagnoseing me with the Saroidosis, they were doing an IVP to check me for kidney stones. They take pictures then you give you a dye in IV. Take more pictures then you have to empty your bladder completely and take more pictures. When they did that my bladder did not empty. The doctor told me he did not know why my bladder did not empty. A few days later he came to my room and told me called another doctor friend that knew a little about Sarcoidosis and said that the bladder not emptying went along with the Sarcoidosis. I know a lot of Sarcoidosis patients and most have been told that their bladders do not empty. My bladder, since I have been on the MP, is now emptying because every 6 months I see my Urologist and they always run a test on me to make sure it has emptied and it has been empty now. I do not if this helps in any way but that is just another of my Sarcoidosis stories. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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expate Member
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Interesting, I'd never thought of the possibility of my bladder not emptying completely. Well, I'm just glad it's getting better!dette |
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Elisabeth Health Professional
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OK, I've got a new one . . . . The much hoped for improvement in my Thyroid function appears to be "happenin' as we speak"! Results from recent blood work showed that I was getting "too much medicine"; i.e., my thyroid is beginning to function again, so not as much medicine is needed - my dosage was cut in 1/2! Howz that for "MP"rovement?!? Elisabeth |
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expate Member
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Awesome news!!!dette, wearin' her hat and shades. |
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eClaire Member
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Incredible news Elisabeth after so little time on the MP. WOW!!! Claire P.S. Back to knitting...heheheh...being allergic to lanolin, I just picked up some Alpaca yarn tonight and it is heavenly to work with. |
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MrsKeeper Member
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I can add another interesting development since beginning my cruise on the good ship MP- a change for the better in my vision! Jan/05 my script was: OD (R) -1.75 / OS (L) -1.50 (D.V.) 3 months into the MP Sept/06 my script was: OD -1.50 / OS -1.50 (D.V.) After 2 years on MP Sept/08 my script was: OD -1.25 / OS -1.25 (D.V.) After 4 years on MP My near vision has changed from +2.25 to +2.00 over these last 4 years. Maybe some day I'll be able to get rid of the trifocals! I never needed any vision correction until I reached my mid-thirties, which happens to be about the time my health took it's biggest nose dive. My distance vision went first, followed later by "typical" age related presbyopia. In reading about presbyopia I found this statement: "Presbyopia is a vision disorder that develops as we age. This condition occurs at approximately 40 years of age. Everyone will eventually develop presbyopia." Perhaps, once the world sees what the MP can do, the presbyopia presupposition will be discarded, along with all the other "inevitable" losses that are expected and accepted as part of aging. |
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eClaire Member
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Reporting in again so soon.... Well, I am just getting ready to go onto regular phase 2 after quite some time (and because I have trouble simply dropping back doses of abx to the beginning, I am ramping down my abx, and so my mind is getting a little bit of a break from IP). At any rate, while I still have significant difficulty reading complex ideas (no energy for reading comprehension beyond short bits or novels at the moment), I spent yesterday evening talking quantum physics with a knowledgable friend. Really, I know just about nothing about the topic and so would have to quiz her on what she knew just to further the conversation. However, the conversation ended up well...comparing the efforts to develop (even the possibility of humans being able to develop) a unified theory of everything and chaos theory--something I do know a little bit about--...not to mention the spiritual aspects of the same quest. The last time I had a conversation like that was 7 years ago (before I became totally disabled) with someone who was an expert in his field (communications). We waxed eloquently, hysterically, and everything in between on the topic for two hours, rudely (sorry folk) ignoring everyone else at the party thrown by the Communications department. Not only was this professor new hot property for the University in his subject area, but he was good looking and it was quite obvious that a few single profs were already interested in him. Okay, maybe it is only me who finds this really funny, but the straight female profs who were interested in him were jealous of me, quizzed me afterward as to how I held his attention, and seemed not to notice that I was at the party with my female partner/spouse. As if two strangers cannot meet and find that they can communicate on the same wave length intensely and with great fun without there being a sexual connection. What a hoot! The point is in both instances I kept up and gave as good as I got and was not simply humoring, but also pushing the envelope of--that is, making that person think and go down different avenues of thought not previously explored--, someone who had studied a subject in much greater depth that I. At any rate, I can see that I may one day get back much if not most of my brain power. If that is the case, I may just have to re-ignite my love affair with math and languages that went south way too early in life. Then again, I might just get into interior design. http://www.youtube.com/watch?v=Tqf9PuKi63E Claire Last edited on Tue Oct 21st, 2008 06:11 by eClaire |
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Deb Grabetz Moderator
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omgoodness Claire...THANK YOU for the early morning entertainment...It is 7:20 a.m. here and I'm energized for the day just from watching this "Girls Just Want to Have Fun" YouTube...you just might have heard me laughing hysterically all the way to Virginia....Thanks for that one!  |
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Juanita Member
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I'm in the middle of a rough patch, lots of body aches, a terrible bladder and colon spasm, more seizures than usual, extreme exhaustion, stabbing pains, etc. Vastly unpleasant patch. But in the middle of all that, I am also stronger than usual. I walk faster, can open stuck jars, carry heavier things. The girls have actually had to ask me to hug softer! I feel as if I'm working just as hard to get the job done, but the outcome is waaaaaay more powerful than I've been able to create in several years. It's bizarre and I love it. If I can become stronger so the muscle weakness goes away, what else can develop in this body of mine??? I had given up the dream of being a body builder as I haven't been able to hold up my arm, never mind lift weights. I want to run a triathlon. That's my dream now. To become a skinny, rangy, ropey, highly defined muscle, long distance runner/ bike rider/ swimmer. Oh, and I breathe more easily now also. I had assumed that low lung function was normal for folks with chronic fatigue. I still have CFS (which is getting much, much better), but breathing is now effortless and my lungs expand more than they used to. |
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eClaire Member
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Yeah for all that Juanita!!!!!  I love that many of us are setting physical, fun goals. As some may know, I want to do ballroom dancing  .However, I also want to lift weights to the point where I am strong enough to try wind surfing.  I've heard that is really hard. Well, I want to be doing that when I'm 60. I think we need to get s ome bets going....  (Just kidding.)Oh, and I want us to start holding a MP prom each year beginning in the year 2013--just to prove we're not superstitious (I need someplace to show off that ballroom dancing)!  Last edited on Sat Oct 25th, 2008 21:55 by eClaire |
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JanEE Member
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Ballroom dancing sounds wonderful. At this point I think my knees and legs are too far gone, but who knows how they'll be a couple years from now, because on my better days they do seem to get better. I know though that I can't get too carried away because I did something to my left knee while doing some stretching exercises the other morning. I've been trying to baby it a little since. Yesterday my Netflix movie came. It was the oldie "You Were Never Lovelier' with Fred Astaire and Rita Hayworth. I watched it last night. Their dancing was heavenly and looked so effortless. The plot was very silly but just what I needed after a whole series of very heavy films. Last week I had an emotional meltdown. I don't know if it was Th1, all the heavy films I've been watching, or the thought of my approaching 75th birthday, but I decided I needed to lighten things up a bit. Maybe a combination of all three. Do any of you watch the dancing shows on tv? Jan |
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expate Member
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Juanita,dette |
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expate Member
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Oh, I'd love to enter into this conversation. I just don't have the umph. Long live hope, Odette |
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eClaire Member
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Jan, I have all of Doris Day's movies (the ones I have not seen about 15 times) sprinkled throughout my Netflix list just to give me a lift the way your dance movies give you a lift. I'm thinking of also putting all of the Donald O'Connor movies on my Netflix. I think he was the best dancer. His big scene in "Singing in the Rain" was a show stealer as far as I am concerned (the one where he breaks through the wall at the end). I could watch it a million times! Claire P.S. All the plots in Fred Astaire's movies were silly. I was watching one not long ago about his being a psychiatrist and there was a dance scene with a golf club and golf balls. At any rate, in a discussion that followed the movie, the moderator said that Astaire said he was constantly being asked to create dance scenes at the oddest of moments and so he just did. The plots in his movies were like the plots in all the movies when directors and producers were still stuck on big follie type productions. Very thin; all about the stage production (just saw one the other night with Joan Davis and Jack Haley--the Tin Man from "The Wizard of Oz"--she was Joan in the movie and he was Jack...what a riot--, you know Joan Davis, she was the Joan who starred in TV's "I Married Joan"). My mother complained throughout the movie that there was no plot and kept asking me what it was (there were two and both were skinny, skinny), and she said it was the sort of movie they would have walked out on when she was young. (Mom is 80.) I liked it though because Joan Davis was as funny as Lucille Ball and I always enjoy getting a glimpse of her. Last edited on Sun Oct 26th, 2008 07:32 by eClaire |
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Deb Grabetz Moderator
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My daughter started a project for me a couple of months ago and stripped the wallpaper in my bathroom. Our intent was that I would show her how to wallpaper or pay to have it finished. Krystin painted the lower half a couple weeks ago in a rich, chocolate brown. My energy has been such that I decided to give the wallpapering a shot. So each day I put up a piece and yesterday I actually put up two! By the end of next week I will be finished. I've used an aqua blue background with brown and green topiaries scattered throughout (a nice contrast with the dark chocolate paint)...the theme will end up being a French theme once done! What is encouraging about being able to do this kind of activity again, is not only about the physical energy but for me more so the mental energy. I was so flat-brained for so many months, that the thought of "looking" at wallpaper alone---sucked my energy! Now, I'm even hanging it again I've also found that returning from such an ill point has taught me to "slow down". In another life, I would have been up until 2:00 in the morning because I pushed myself so much all of the time---and would have felt obligated to get that bathroom done. In this life, I am content to do what works for my body---I'm really, really liking this "NEW" me! |
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expate Member
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Deb, I've been doing the same with bulbs that I ordered when I was feeling "better". I've put 50 in per day for the last two days (at dusk, which allows me just about the right amount of time before it's too dark to see). Of course, it's not just the planting of the bulbs. I essentially haven't worked in my garden for 3 months, so there are weeds and dead flowers to cut back, etc, just to get to the point of planting. In all, it's been about an hour each day. But this morning I slept an extra two hours. So, it's great and I think about spring as I plant these bulbs and the beauty their flowers will bring to brighten my and others' days and keep slogging away at it. I still have 200 to go. Thing is, it's personally sort of hard because, I could have done this in two days pre-MP, whereas if I keep my pace now, it will take six. So, as with the bulbs, I have to look forward, past this season and the next, to imagine how I will feel as I continue on the MP and regain health. dette |
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Deb Grabetz Moderator
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Odette, When spring arrives, I bet you will also look back and think of the effort that went into planting those bulbs...your progress at this point will be so noticeable, you will not only be celebrating those bulbs in bloom--- but your own growth with your personal health!!!! Yayyyyy.... |
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JanEE Member
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Claire, I like Doris Day too, even better from what I have seen of her as a person. She had an animal show on tv a long time ago that was fun. I also remember a show where Les Brown and his band showed up at her ranch and they all had dinner together and reminisced, after which they all played/sang "Sentimental Journey" for old time's sake. Isn't the song you are thinking of with Donald O'Connor called "Make 'Em Laugh"? I agree that he was an underrated dancer, and one of the best. There was a movie I saw when I was very young that I remembered fondly through the years. It starred Jane Powell in her first role. It was called "Song of the Open Road". Years later I shared with a friend how much I liked that movie, especially one scene where a bunch of kids were riding their bicycles down the road and all singing at the top of their lungs. She said, "Wow, you liked that too? That was also my favorite scene!" One day I noticed in the tv guide that it was going to be on television. I called her and we both cancelled things on our calendar to watch it. We made popcorn and settled in for the show only to stare at each other in total disbelief as it went on. It was the silliest, most overacted movie, with the dumbest plot, either of us could remember. The only good thing about it was her singing. Deb, I can hear the joy in your new-found energy. I'm glad that you know to take it slow though. I know it's so easy to overdo without realizing it. Keep up the great work though. Odette, the thought of putting in that many bulbs just makes me tired. I bought just a few and am going to put them in a pot so, in the spring, I can see them through my backdoor as I walk into the kitchen. They are Monte Carlo tulips. Double yellow and fragrant. Jan |
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eClaire Member
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Yes Jan! The song was "Make 'Em Laugh!" I've had the same experience with some movies as you had with your friend. Claire |
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expate Member
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Yep, I had that kind of film experience with "Hello Dolly", absolutely loved it as a kid, watched it as an adult and wondered WHAT I was thinking. I miscounted on the bulbs. It's only 250 total - 200 mixed blue muscari and 50 miniature daffodills. I put in those two days, felt lousy each day after. So yesterday, to test my theory (feeling bad due to sun exposure) I didn't work in the garden. Today? Not feeling so bad. Tomorrow? I'm sure I'll be down. Got home to see the work the fence people had done. Well, with the fences down, I could see the overgrowth on the other side that needed to come out. My husband I worked hard. I finally had to stop, weak to the point of shaking. Grrrrr. detteI'm just going to find someone else to plant those bulbs. |
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Juanita Member
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I did all that bulb planting last Fall and then we sold that place to move where we are now. And the people who bought the house looked at it after the snow arrived so they will have had no idea that the front bed was jam-packed with flower potential. I really hope they were delighted and not indifferent. You are giving yourself such a present that will arrive next Spring, Odette. |
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expate Member
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Yes, that human ability to preview and look to the future can get us through many things. dette |
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eClaire Member
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Okay, this is not an unexpected improvement but an unexpected symptom. I started Reg Phase 2 (FINALLY) on Oct 29. On both Day 3 and Day 4 later in the evening, my primary IP is that I feel very high, like on drugs (this is how I felt when I took prednisone actually...euphoric)/alcohol, which will make watching The Daily Show and The Steven Colbert Show even funnier. The CWD must be dying around the happy centers in my brain. What a trip! (If this symptom was dependable, then this combo of abx I'm on would be a street drug...no kidding!)Okay, I know I'm probably in for a roller coaster ride, but I thought I'd report this rather fun IP. And yes, eating a 1/2 an apple calms it down just like it calms down my other IP...so it is definitely IP. But why do it--eat the apple that is, eh? Claire |
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Elisabeth Health Professional
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And may all of us have more IPR like this . . . ! Elisabeth |
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Juanita Member
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It's fun, isn't it? I've loved the days when I've laughed and laughed because everything is funny and I feel full of happiness and optimism. |
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Deb Grabetz Moderator
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Claire--Juanita This returning laughter and enthusiasm is enough to encourage those little buggers right out of us!!! I'm sure the CWD preferred the sluggish, ill host that we are surely ridding ourselves of!!  Egads! |
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eClaire Member
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OMG! Is THAT how you spell "Egads"! Well, except for the breakup of an 8-year relationship in the last year and this fall's elections, I am generally a fairly peaceful and joyous person though outwardly I have pressured speech and experience in some measure TH1 run on of the mouth (whether that's b/c of the illness or b/c I am so isolated b/c of the illness). Howevery, I've always said I have been given more than my share of feel good chemicals. What I won't miss from this TH1 experience at all is my inability to be strong for myself--stand up for myself--when standing up is appropriate. I really worked at developing that skill and I know I still have it even if I don't have the strength to use it much of the time. However, I guess I'm learning a new lesson in life, as well: how to completely let go and flow. You've heard of the expression "Life is a bowl of cherries," well it is from an old song and this is a part of the lyrics that I particularly like: "Life is just a bowl of cherries, So live and laugh at it all." And I have this new goal now that's connected to those lyrics. I learned long ago that having a thick skin was not particularly helpful (at least it was not something that appeared helpful to those with thick skins around me), and it was not something I was probably going to be all that great at developing. I seem to have been born with particularly thin skin. You know, I'm one of those folk whom when others take my inventory in a less than compassionate manner and I object, they end up calling me "too sensitive." Well my goal now is to develop such a thin skin that I become a part of the fabric of the Universe and so that the cherry pits just pass right on through. Just like how other folk's misbehavior is on their ledger (with no debt being owed to me) so are their less than compassionate attempts to correct or help others (that would be my less than artful attempts included), and I need to learn to let misguided or potentially hurtful words (pits) pass through me, owning what is mine, if there is anything to own, and allowing the rest of what is detritus to just slip through the open weave of the fabric. Not being able to stand up for myself due to lack of energy and it not being worth the energy, I am now being given the opportunity to really GET THIS lesson in life. Being disabled and being on the MP have brought so many wonderful lessons into my life. Claire |
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JanEE Member
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I feel like you Claire, in that I am happy most of the time. I did have a brief meltdown a while back, but it was over the next day. You're right about the MP providing us with many lessons. I think I have learned to let things roll off my back a little better also. It seems some people almost want us to fail at the protocol, or give it up, but maybe that's just my interpretation, or paranoia (Th1). Maybe, in reality, they don't even think about it. I have learned though, that when one friend in particular calls me about once a month, I just try to hear her out and answer her questions once again, as though I've never heard them before. She asks the same thing over and over again, including little digs/putdowns of the MP here and there. But I know from experience that I can't even call her on it because she just denies it. And I have come to the conclusion that it's useless to try and help her understand. It's almost like she doesn't really want to. I think that way she can rationalize not using it herself, which in my opinion she desperately needs (lupus, depression, Reynaud's, migraines, allergies, etc). I used to spend lots of time looking things up and sending her printouts with explanations, but I don't even do that anymore. I just try to be still, and be patient. I find it not only much easier, but easier on my energy level, which I need to get myself through this. In fact, it's much easier to do now than in the beginning when I felt so weak and emotionally vulnerable. It used to be that I would find myself stuttering and stammering---hardly being able to get my thoughts out. I would end up just not talking at all. Now sometimes I catch myself thinking that I can't seem to stop talking. Speaking for myself, I think it's the isolation. Every time I hear "Life is just a bowl of cherries" I think of Mary Engelbreit's version on her greeting card. "Life is just a chair of bowlies". Jan |
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eClaire Member
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Jan, I am so glad to hear another MPer speak about focusing on herself getting well and not trying to convince folk who cannot be convinced that they ought to try the MP. I figure in due time I will become well enough (meaning when I am well) to do my part and in due time the MP will prove itself to more and more people. In the meantime, we have to focus on ourselves to get well and not waste a lot of energy. God love your patience with your friend. Interesting how you say you've become better at letting things roll off your back. I was raised with the saying, "Like water off a duck's back," however, I've never been very good about that. Oh, if someone I'm not close to or don't know at all behaves badly toward me, I tend not to take it personally (except the sicker I got...sigh...and so like others I have a few regretable MP posting ). So that is not the problem for me. (I'm not into accepting responsibility for other people's bad moods, bad behavior, bad attitudes, inability to see me, etc.) I have had difficulty, however, with folk who really mean a lot to me--people I try to be my best with--treating me in a less than compassionate manner or suspecting that my behavior means this or that. I've been told that I expect the world to be fair and rational when it is not. Oh well.At any rate, my brother used to use an another analogy, which is sort of like my thin skinned analogy (since the water off a duck's back doesn't work for me). It goes like this: He would see the slight coming, run and open the front door to his head and then quickly run and open the back door and let the slight pass through like a freight train. I imagine if there was anything useful he needed to get, then he'd pick up the freight as it went through. But really...how much baggage do we need? Claire |
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caroldeleah Member
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Deleah is having a fantastic time down in SC. She didn't place in the top 10 in the piano competition but she was so excited to play in the Rodheaver Auditorium. Two friends who saw her last spring when she was down there, have commented on how much better she looks now (and she's just finished Phase I!) The change has not been as obvious to us because both the decline and the improvement have been gradual. We see individual symptoms improve, but miss the overall gradual change in appearance. One thing that I can't miss is her happy spirit , because of being on a protocol that is making her feel better instead of worse, like the methotrexate did.Two of her room-mates are pre-med students and conversations have been had!! We have a pediatrician in town who is also a concert pianist (or is that a concert pianist who is also a pediatrician?). I shall remind Deleah of that when she returns . Gotta advance the MP every way we can!!!Blessings to all, Carol |
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Aunt Diana Member
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Claire....your words ring very true to me. I used to work in hospitals...this is many moons ago....as a "Director of Volunteers". One of my bosses once said to me that he thought the pre-requisite for this job was to have the "hide of a rhinoceros and the heart of a social worker". So I have never really considered myself thin-skinned. But the lack of support I have received from my family after deciding to do the MP has been a really tough thing for me to understand. And perhaps my vulnerability now, and for the first time in my life that I really have been handicapped have made me a bit thin skinned. I struggle trying to understand this and so far I have been un-successful. The really sad part for me is that my mother was afflicted with a TH1 illness all of her life. Of course, we didn't know what it was in those days, and nobody did. So the poor woman spent her last twenty years searching for a doctor and of course never found one. But meanwhile she was labelled a "hypochondriac". My siblings now, of course attribute my illness to the same "hypochondria" and I hear one psychobabble explanation after another for what really ails me....and it breaks my heart. Not just for me, but for my mother, who I now realize went through this Hell without a single person ever understanding her real situation. I would give my "eye teeth" for just one conversation with her in which I could apologize for my insensitivity. So, for now, as far as my family is concerned I have written them off. The irony is that I can see the illness developing in each and every one of them.....but I doubt they will ever see the "light". I don't know if this is the right place for these remarks, but something you said really rang a bell, or maybe it's just my mood. |
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eClaire Member
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Aunt Diana, Well...the topic is Unexpected Improvements and that's what I was writing about. I'd like to think that your being able to relate to your dear departed mother is an unexpected improvement for you. Sad, but an improved way of seeing life as a result of what has happened to you and your experience on the MP. Expanded compassion. I, too, hear people judge others (my mother, for example, and me) with comments like "Oh no pain killers [or sleep medicine] works for you b/c...." This is usually said with some sort of doubting sarcasm backed up with the belief that others (my mother and/or me) are being difficult or wanting to be special, or that our inability to find the right meds is somehow tied to parenting issues (and btw, we really don't want to get well as well), with the person saying it having no idea that as folk get sicker it is often extremely difficult to find meds that help with pain or sleep and some folk get very sensitive to meds period. The sick person is not doing "THIS" to the healthy people around them, though they may rudely behave as if the sick person is precisely doing that and so therefore deserving of derision or being left behind. Often, these folk are beyond reason, beyond our ability to help them see the true us in front of them (let alone their own existential fears). Folk can't handle their own mortality and the cruelty that they inflict on others is really to be pitied, then empathized with (like when you realized you didn't "get" your mom--that is, we see the ways in which we too have been insensitive in the past), and finally, I believe, let go. That's what being disabled and being on the MP is doing: helping me let things pass on by me, helping me let go, allowing other people their misguided beliefs without it necessarily hurting me. I hope we can all get there while expanding our own capacity for compassion. I joke with some of my friends that when I am through with the MP, I will have truly achieved becoming Buddha. That's how profoundly I believe this disability experience can impact our lives if only we reach deep and understand our connection to others (regardless of how "ugly" people can be). Claire Last edited on Thu Nov 6th, 2008 03:50 by eClaire |
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Joyful Foundation Staff
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A wonderful gift to me during this healing process has been the return of the ability to dream the kinds of dreams that reveal truth to my soul. Near the beginning of the protocol I had an interesting dream that was a shadow of things to come. The dream started with a scene where I was with my favorite group of friends eating a common meal together. After the meal they all went outside and got into a station wagon without me. They headed up a road that was started with switchbacks, climbing a very steep hill. In the dream I was extremely distressed about being left behind and began to try to climb straight up the hill using a rough dirt trail that was there. I was quickly winded and crying. Feeling utterly exhausted and abandoned, I kept trying to get to the next switchback to catch up with my friends. When I finally reached the top, I had just missed them as they headed down the other side. Heading to where I knew there was another time of feasting planned. I just stood there, feeling so left out and sad. Just then, a native american man with a beautifully kind face stepped up to me. He told me not to worry, that everything was going to be alright. Then he showed me this beautiful old (mint condition) vehicle off to the side of the road. It was what I think was called a 'woodie' back in it's day. He was giving me a thorough tour of it, but when we looked under the hood there was no engine! I was upset about the missing engine, but we got in anyway. He grinned at me, saying, "this will be easy." Then I realized he was a dear friend of mine, but I hadn't recognised him as Jesus until the moment we began to roll down the hill so easy and free without a care in the world. And even though it hurt to think my friends would leave me, I knew I would be able to meet up with them again. Having had the dream, I found it easier as my body required more and more rest and more light avoidance, to allow the world to go on without me. It helped me to be able to lay aside my feelings of distress, and know that in resting (no engine) and trusting (not driving myself), that my road was to be one of peace. Last edited on Thu Nov 6th, 2008 04:51 by Joyful |
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eClaire Member
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Joyful, Thank was an incredibly beautiful and healing dream. I, too, find that important learning, healing and spiritual messages come to me in my sleep and if I pay attention I can learn so much about me and the world. I've been asked, "How do you know when you've had a dream like this?" Well, so much of dreaming is flotsam, however, when you've had a dream like this it stands out and the symbols presented may require some thought, some gut, some inspiration, and either with that or without you "get" the message. Thank you for sharing that. I certainly found your dream personally healing. Yes, peace. We will fall into life or death, depending on our paths in our near futures, however, my hope for all of us is that we fall with grace and with peace in our hearts. Claire |
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Scarlett Member
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Claire, Aunt Di, Joyful, Thank you each one for the lovely dreams/experiences you have shared. I can truly relate. Aunt Diana, your story about your mother I can specifically relate to. However, my mother is living so I have had the advantage of being able to seek forgiveness for not always understanding. If your mother was anything like you, kindness personified, I am sure she would forgive you with a hug and a smile . Ladies, one day all will be well with us and we will go on to help others in our new found health. Thank you Dr. Marshall and staff.Scarlett |
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Aunt Diana Member
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Thank you all for your kind comments. Wow!! Joyful, that dream was incredible. My dreams are not coming in so clearly yet......but, speaking of improvements, my dreams are so much better than the psychedelic dreams I had experienced throughout my illness. |
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Kas Member
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I have some good news, too. About 15 months ago, I went to see an orthopod about the torn miniscus in my right knee. I was also having pain in the left one and had been having problems with the knees since my late teens. The surgeion wanted to book me in for bilateral arthroscopic surgery. Dr M was totally against it at the time, so I decided to put things on hold and try and get further along the MP. Anyway, yesterday I had a follow- up with the same doc who wanted to know if I still wanted the surgery. To my surprise, he pronounced my gait, totally normal, there was none of the previous swelling and because my pain is so greatly reduced and tolerable, he declared that there was no need for surgery at the this point and may never be, even although my problem is mechanical. He also stated that the likelihood of my ever needing knee replacement, is minimal. Ok, so my liver tests are way up, the kidneys are holding stable below normal(all IP and proof that things are working, I say), but heck, my knees are great, my sinuses are clear, my doctor cannot believe the improvement in my chronic, severe yeast and my legs and feet hardly ever burn, except as an IP. My lungs still have a slight crackle, but their function is improved and my cough is greatly reduced most days. If all of this is not proof of the MP working for me at my slow pace, well, then nothing is! Oh, and I hardly need my Noirs indoors any longer, but still use them when I feel the need. Yay for the MP! Last edited on Fri Nov 7th, 2008 14:51 by Kas |
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Elisabeth Health Professional
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Wow! Great report & encouragement Kas! Thanks for sharing . . . . Elisabeth |
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JanEE Member
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Great news Kas! I also have a torn meniscus, plus a Baker's cyst, in my left knee, so I'm happy to read your good news. Over the years I've had several injuries on that leg/knee. Then several years ago I fell when my foot caught on something. It twisted and pulled my leg both at the same time. The next day the pain was so bad I could hardly walk. Then, after I'd been on the MP a while the meniscus tore while simply getting up from a chair. The horrible shooting pain from that kept happening over and over, each time just about knocking me to the floor. Just as it was beginning to feel a little better I fell down the last two or three stairs in my house and banged it up again. It finally feels good enough to walk on, but I still have to be careful of the position I get it in. Kneeling is hard. It all feels better on my good days, so I'm hoping that more time on the MP will heal it completely. I have found a procedure though, that I'm hoping will prove to be an answer if it doesn't get better. I just stumbled on this online one day and checked it out. It's about a vet, Dr. Jimi Cook, who discovered a procedure to heal torn menisci on dogs, and it has now been okayed for use on humans. I found many links about it, but here is one to read. I'd be anxious to hear the outcomes on people before giving in to the treatment though. http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=18643 My best to you Kas, and I wish you continued progress. You have had a long trip getting here. Jan Last edited on Sat Nov 8th, 2008 02:55 by JanEE |
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Kas Member
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Thanks guys. I still have a LONG way to go on the MP and lots more to conquer. I need to see that liver and those kidney tests eventually start returning to the more healthy looking range, in particular. I need to know what it feels like to have BP that cannot go as low as 60/37 or goes higher than 75/45 and gives me my old level of energy back. I need to be able to enjoy the great outdoors again fully. But, I am one patient lady, and having seen my dear late Mom go steadily downhill on steroids, I am prepared to take things very slowly to get to my goal of returned health. The trick here is to be able to carry on with life to the best of your ability whilst on the MP, to take abx breaks if you go away, to adapt to the light situation in the most fashionable way ( without looking freakish!) and not to allow your illness or treatment to define your life or even prevent you from having great times. If you are going to get extra light, take extra Benicar. Perhaps I cope with my working life because I take benicar every four hours during the day, for the most part. If I am at home, I try and push it every 6 hours, but seem to go back to the four hourly dosing because it works for me. I have also learned to space my abx out to every three days or longer, if necessary. It still works at killing the bacteria, but allows me to live a better quality of life whilst on the MP. If you do cheat a bit ( not in the beginning), you learn the consquences and how to deal with them. It's kinda like being on a diet- sometimes you fall off track, but you can always climb back on again without too much damage having been done. The MP is a large part of my life, but it is not the only one. I teach, I study further, I travel, I am a wife, Mom, friend, volunteer etc and with the exception of close family and friends, the MP is not something discussed or even known by anyone else I work with daily. |
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Elisabeth Health Professional
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OK guys (& gals!); I've got two new ones: 1) The beginning of Nov. I was able to walk around the block (at a fairly good "clip" I might add!) without getting short of breath or having chest heaviness. WHEW! In fact, the last few hundred feet I was able to jog. Yea, it's true. Can you say, "HAPPY?"!?! I wasn't wiped out the next day either, so I didn't have to "pay" for my fun - hee! hee! (As a "mile marker" of improvement: last year this time I could not walk 1/8 of a way around the block because of utter, inexpressible fatigue - and then was exhausted for a period of time from having tried = discouragement!) 2) This may sound surprising given #1, but I am now sitting up at my computer desk to do computer work more frequently instead of reclining on the couch w/ the laptop. It's amazing to me how much difference there can be in energy loss between sitting w/ my legs horizontal &/or vertical. (I know Claire has posted her experience w/ changing from lying horizontal to going more vertical). Christmas Blessings to all - and to all a "good (MP) cheer"! Elisabeth |
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Sunbeam Member
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Great news Elisabeth and so very encouraging for everyone that you have reached such a milestone. I hope you continue to make progress and are able to enjoy the Christmas period, Take care, Lynn |
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Elisabeth Health Professional
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Thanks Lynn. My IPR has been quite "high" of late & I'm attempting to get it to a more tolerable level to truly enjoy Christmas this year (was so ill last year). Merry Christmas to you & yours also! Elisabeth |
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expate Member
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OK, so I don't know if this is due to the MP or not, but it is an improvement. I had blood drawn for D level testing this morning. I'm a difficult "stick" as they say. Well, for the first time since I can remember, they got it on the first try!!! I've been sent away more than once because there is a maximum number of tries (3 generally). They've used butterfly needles, children's needles, and black needles (I'm just repeating what I hear them say; I don't know anything about it).When I had blood drawn for the Lyme test a year ago, the nurse had to give up, first after trying a couple of places and then, when she finally hit a vessel, my blood was so thick, it wouldn't flow to fill the tube. She quit and sent me to another place to have blood drawn. She said thick blood is not a good thing (she kind of scared me, really). Well, today the tech drawing my blood said I had "good healthy blood" [by looks alone]. And that's after only having a glass of water to take my meds in the last 12 hours. So, in my mind, I'm going to attribute the improvement in my blood viscosity to the MP. Thanks! dette |
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Joyful Foundation Staff
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Awesome dette!!! |
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Deb Grabetz Moderator
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Odette, That is really interesting because I am the same way. I've never been able to donate blood because it's no more than a trickle they can get, even if they're able to find a vein. I've had blood drawn from the back of my forearm to the top of my shoulder...in fact, you reminded me of a not so funny story that is kind of funny now thinking about it... When I went into the hospital for my biopsy (when Sarc was thought to be lymphoma)...the nurse could not get an IV started...so she called the anesthesiologist down to try (a great big guy, with these big hands)...he tries a few times and then looks at me and tells me he was going to have to go into my jugular for the IV. I could feel the tears welling up in my eyes and turned to my hubby and told him we were going home...and by god, that's just where I was headed. My hubby of course is telling me I had to get this biopsy done and without the IV they couldn't do it...lucky for me, an ER nurse happened to be listening to the conversation and finally found a vein at the very top of my arm near my armpit...so we carried on! I'd like to smack that anesthesiologist to this day, thinking he was going to stick anything into my jugular!!!! Well, I hope we have similar outcomes, haven't had blood drawn now for awhile, but should be interesting! Deb P.S. I'LL ADD HERE ALSO THAT MY LEFT EYE CONTINUES TO IMPROVE WITH SIGHT. I HAVEN'T POSTED FOR AWHILE ABOUT THIS BUT WHAT USED TO BE A BLACK BLOB WHEN I CLOSED MY GOOD EYE, AND BASICALLY SHUT OFF ALL VISION IN THIS EYE IS NOW A THIN DARK AREA RIGHT IN THE MIDDLE OF MY VIEW. IN ALL HONESTY IT IS JUST ABOUT THE NEATEST THING I COULD EXPECT TO HAPPEN, ESPECIALLY SINCE MY EYE DOCTOR HAS BEEN TELLING ME FOR YEARS IT'S A VISIUAL FIELD LOSS THAT WOULD NEVER CHANGE....TELL ME, WHY DO THESE DOCS SAY "NEVER", I GUESS THEY JUST HAVEN'T MET DR. MARSHALL OR THE MP!!!!!! |
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Elisabeth Health Professional
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Have just finished compiling a list of improvements (to date) to give to my physician at my next appointment - WOW! WHAT AN ENCOURAGEMENT! Here are some recent improvements I've noticed since last posting: December ’08 – Less ectopy (irregular/abnormal heartbeats), diminished brain fog. February ’09 – Able to go without “shades” in low lighting some. March ‘09 – Awaken without feeling fatigued and less anxiety in general, increased strength/stamina overall & planning first out of state trip, able to wear only one pair “shades” in restaurant. To date – no sinus infections or bronchitis since stopping "20 yrs. worth" of allergy shots prior to starting MP 3/3/08. Blessings, Elisabeth |
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BARNEY Moderator 
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Elisabeth, Your news is great, you are really on the road to recovery. Keep up the good work!!!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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Deb Grabetz Moderator
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Elisabeth, WOW! What an impressive list of improvements! Just the fact that your sinus and bronchitis has improved must feel great, both of those are so very draining physically and mentally...WOW! Such great news for you and the MP community. Keep up the fantastic healing...Deb |
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Elisabeth Health Professional
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Thanks Barney & Deb. Appreciate the encouragement & hope it is a great encouragement to others. I honestly didn't realize so much had improved until I made myself sit down to make a list for my physician (who happens to be a bit skeptical ). I was so impressed w/ the effects of the MP that I knew I couldn't keep these to myself (tend to get lazy and not post). My previous postings on this thread were a great reference for me in completing the list & I was surprised at how many improvements I'd forgotten about!Therefore, I would encourage everyone who is willing to do the same for themselves as they go along - and "share" with us, if they don't mind to do so. We will certainly rejoice with them & be more encouraged to continue in our own journey, because as Barney & others have put it, "We are ALL in this TOGETHER!" Blessings, Elisabeth |
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Deb Grabetz Moderator
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Each time I post my PR report, I mean to include this significant improvement and each time for the last month, I've forgotten...looks like there is still neuro work to do... my memory that is!!! Prior to my flare in 2006 and finding the MP, my ears were so troublesome that flying I had to have tubes put in my ears. We sometimes work 4-5 flights which ascending and descending can add up to 10x a day. My ears were impossible! They would plug up, hurt due to the pressure that would build up and cause me to feel off balance often at the end of the day. The tubes helped but were not a fix. Since I've gone back to work three months ago, my ears are so much more adaptable to the altitude changes and this is WITHOUT tubes. My guess is there has been a lot of inflammation resolved with my inner ear/ear. As I still experience IP with my ears, wet and itching with abx increasing, I expect even more progress in this area. It's a grand thing to not be dealing with this---also a connection with my sinuses as the constant drainage I experienced before the MP has also resolved! YAY!!! |
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Alayne Member 
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Deb, that's really great to hear about your ears healing! I've had a similar experience with mine, although I certainly have never flown as much as you. What a relief for you to be able to fly without tubes. My ear pain was usually agonizing when taking off and landing. It would last 3-4 days afterwards as well. About 9 months into MP, I flew for the first time since starting the protocol. I couldn't initially figure out what was "wrong," then realized my ears weren't killing me. Since then I've flown about six times. My ears adjust easily to the pressure changes all by themselves (no intervention needed any longer) and there's no longer any pain. I've been on the MP about 3.5 years and my ears seldom have IP now. The itching and wetness are mainly a thing of the past. My hearing is better too. Cheers! Alayne |
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Kas Member
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Now that you gals mention it, I also have found that my ears are so much better when flying and afterwards. I used to have terrible earache and blocked ears for days, and now I am hardly aware of more than a vague, brief blocked feeling, which vanishes once we are on the ground immediately. I think it has something to do with my sinus inflammation being so much better on the MP. Another thing I have noticed, is that the eczema I always got on the outer shell of my ears ( nowhere else on the body) has vanished. Now, if only my kidneys and liver would take a hint from the skin and sinuses, all would be well in MP Land!!! |
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eClaire Member
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I realized yesterday that an odd little symptom I've had on and off (mostly on; very frequent) for the last 30 years has not be evident for about the last 6 months. I used to get the sensation that there was a hair (like a long hair that had fallen out of my head) stuck between two toes with the hair running over the top of two toes. I could feel the tension of the hair against the toes and I would reach down to remove the hair and find NO hair. Always the same foot and same two toes. Weird. Hope it stays gone. Claire |
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eClaire Member
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This morning I was able to read the alarm clock beside my bed without my glasses. I haven't been able to do that in about 8 years (I couldn't see the hands before let alone the numbers). Claire |
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Deb Grabetz Moderator
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Wow, Claire that really is exciting news! There is a lot that I've said I could give up in life, but my eyesight, a treasure. I realized I had posted in my Alumni post that my hand swelling had gone down. It wasn't until this morning that I realized the last two PR's I had posted how my palms were itching. Wow! There must be some major connection. This itching causes me to dig deep down into my tissue on the palm side of my hand and especially the fatty part right at the base of the fingers. It has been relentless at times and now I see a connection to the IP! All of the tissue between my joints is completely normal, with the exception of a tiny area near my right index finger. My children caught scabies in their early childhood from my niece. It was absolutely awful. Their bodies, especially the leg area were completely rashed and they had minimal relief from soothing baths. This itching reminded me of scabies...!!! Ugh!!! |
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JanEE Member
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Claire and Deb, oh how lucky you both are. I am still waiting for some of those small improvements. The only time I thought my eyes had improved was one morning when I woke up and the numbers on the clock were super sharp. I really got excited and then suddenly realized I'd forgotten to take out my contacts the night before. Oh well, I can still dream of the future. I have also had a strong return of body itching lately. I am imagining that it goes along with Stage 5 symptoms of my overly strong IP. I'd hate to think what might be happening to me now in those areas of strongest IP and itching if I weren't on the MP. The worst spots are my scalp (my guess is that that IP is the reason for losing so much hair), my entire back (IP symptoms are very strong back pain) and the backs of my upper arms. My hair is falling out at an astonishing rate. I hope it stops one of these days. Between me and my cat I could begin stuffing pillows with it. I've begun to cut back on my antibiotics to try and get a handle on all this. It's been hard to wrap my head around the idea of stopping them, but with all the latest information we've had to digest it's making more and more sense. Jan |
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eClaire Member
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JanEE, I hope you start seeing some small improvements soon too. I was so sick that you can hardly tell from my PR that I am having improvements (too many sxs to chart and the biggest sxs are hanging on the hardest). However, I can tell, from this cat bird's seat that I have, that I am getting better. Just seeing the waxing and waning of the symptoms with my trigger fingers (a problem with each and every finger and thumb) tells me that progress is being made there as well. I have no doubt that without the MP I would not be alive today and I look forward to continued improvement even though I have a feeling that it will take me quite some time to get back to functioning like I did before, let alone a healthy person. That's a-okay. I love life and so I'll take it however I can get it. Besides, I'd love to see what it is like to be healthy. Hope stage 5 does not drag on too long for you, Claire Last edited on Fri May 1st, 2009 13:05 by eClaire |
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expate Member
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In street parlance, Jan, I concur with Claire to say, "I'm feelin' you." OK, unexpected improvements... I went to the dentist today for regular cleaning (but on 4 month rather than 3 month recall) and had no readings above a 3 (gum stuff). That has only happened once since my bone graft surgery 8 years ago. I have kept dental/gum issues at bay with meticulous home care all these years, but now, with the same attention, it's better even though I'm longer between cleanings. My dental hygienist is impressed and supportive. Then I went for my annual gyno-exam (though it's been a year and a half ). While I am two and a half years post menopausal, the size of my uterus has gone down a month's pregnancy in size (5 months at last visit to 12 weeks this time - isn't our med system arcane guys?) since my last exam. Umm, yeah, uterine fibroids. So, maybe it would have happened anyhow, or maybe it's the MP, but two and a half years after my last period, I'm a month less pregnant! dette |
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eClaire Member
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Congrats on being a month less pregnant!!! P.S. Speaking of pregnancy related changes (no I'm not pregnant--I too am post menopausal), one unexpected improvement is...my breasts are significantly larger at this weight than they have been since I got really sick as a teen. My curves, while keeping the same ratio in terms of measurement, are curvier. Woo Hoo!!! Last edited on Fri May 22nd, 2009 02:35 by eClaire |
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Juanita Member
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I just came back from my physical with pap test and the doctor is amazed that my periods are now almost as regular as when I was in my twenties. I'm 48 and she is stunned. She stared at me with a huge smile and said, That MP rocks. |
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Deb Grabetz Moderator
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NICE Juanita! Anything regular with a menstrual cycle is a gift! I received another report on labs that I've had done recently. My doc wanted to recheck my D,1-25 which he has not done for a year now. Although the MP suggest checking prior to commencing the MP, he likes to check yearly. So again, another pleasant surprise with labs as my D,1-25 came down to 18!!!!! |
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eClaire Member
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This improvement was expected. I just did not expect it to begin so soon in my MP journey given how far yet I seem to have to go. My fingernails are becoming slightly stronger, not splitting or breaking quite as easily as before. However, the biggest news is my toenails. They are actually becoming thicker. They were so thin before that they were slicing into my toes. What a relief. To top it off I am not having to put bandaids on my big toes to protect deeply torn nails. THANKS ALL for the encouragement! Claire P.S. It is amazing how tiny improvements like this can mean so much. |
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expate Member
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Hey, Nice, eh? oh |
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Deb Grabetz Moderator
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Well, this group of a few with posts above, all started the MP together...it's time to hear good things for one another...I always love Freddie's note about being in this together...you ladies, well, let's just put it this way, without getting all mushy and gushy and stuff...have been my lifeline on this journey! i love ya! |
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Freddie Ash Member
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HI DEB & ALL This is Fred in WV. I just want to thank you, Deb, for all the kind words. And to all who post or even just read these posting, I love you all and love reading what each has to say about different things that is happening to each of us. It is good for us to just share these things because we never know who is reading and may need the very thing we are telling that will give some one the courage to keep going with the Marshall Protocol. I have received e-mails from people or even phone calls that they read something I wrote that helped them in some way. Yes, I mean phone calls, a man in KY called me once who had sarc and found the article that Amy did on me and he said he had the same symptoms and could not get a doctor to listen. He never even found it on the MP sites. Any way I just want to say a great big THANK YOU ALL too. Remember, we are all in this together and I am pulling for us. Your friend in sarcoidosis Freddie |
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JanEE Member
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Same here, Deb. I actually didn't register here until I began phase 2, which was a big mistake because I missed out on a lot of communication with you all. I didn't realize how great it was until it was too late, but better late than never. I also just made it before they closed the registration. I began the protocol in May of 2005, so I've now been on it for 4 years and a month---and, Claire, I think my fingernails are getting stronger too---for the second time. Freddie, that man who found your phone number and gave you a call shows that you can do anything if you're determined, which is what we're all doing on the MP. This is some journey, and who could ask for better traveling companions! Hugs to you all, Jan |
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eClaire Member
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Yeah! Yeah! Yeah! Yesterday evening I had what I think was my first temperature since Dec 2001. (I have only checked my temperature when I felt feverish about 1/3 to 1/2 the time, but never has it even reached 98.6. A couple weeks ago it reached 98.4 though.) 99.2!!! I think i am entering into a new phase of healing. Although it was 99.2, my sxs were consistent with a much higher fever (e.g., muscle and bone pain). Yeah! Yeah! Yeah! |
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Deb Grabetz Moderator
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Yeah!Yeah!Yeah! |
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eClaire Member
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I can't imagine that there is anywhere else on the Net where people celebrate their own misery with such a glad heart! |
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Deb Grabetz Moderator
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*Deb laughing hysterically* Now Claire, that was the best I've heard in awhile! Should be a quote of some sort for our MP t-shirts! |
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expate Member
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Awesome! |
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Pipistrelle Member
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Yeah, BAD = good (Bugs Are Dying) |
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Deb Grabetz Moderator
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MY NAILS!!!! In my 20's I used to have the most beautiful nails. People used to think they were not real. They were hard and would grow as long as I'd let them. Sometime in my early 30's this stopped. I then switched to acrylics as I missed those nice nails, which hindsight, with my bacterial load that I was unaware of was probably a BIG mistake. When I flared in '06, I had the acrylics taken off for good. Now, I have my own nails back! A small improvement, yet tells me that the MP is working in many different ways! Oh and today I have them manicured French style. |
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Sarah Jane Member
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Congrats on the beautiful, natural nails, Deb! I used to have a lot of ridges in my nails, but they've evened out on their own nearly all the way over the past year. I have just a few small ones on a couple of fingers now. They also used to be very weak, and they're stronger now. |
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Deb Grabetz Moderator
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Thanks Sarah Jane! It is nice to see these milestone improvements that we fail to understand when we've lost in the first place. Yes, I too had the ridges...and it seems like I've looked this up before I was on the MP, to figure out what was causing. Any ideas?? |
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Sarah Jane Member
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I did a Google search, and it seems to be that when your body is in a state of crisis, your nails are an indicator. Vertical lines are very normal and are no cause for worry (the kind that run the length of your nail from bed to tip), whereas horizontal lines tend to indicate some interruption in your body's ability to create the nail and is likely a sign of underlying illness. I tried adding the MP to my Google search, but all that came up was a post at Sarcinfo by Belinda discussing cold hands and feet, with a passing mention to damaged nails. So it seems that the resolution of nail issues is a sign that things are working more smoothly internally. |
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eClaire Member
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I do not believe for a second that vertical lines mean nothing. I think it depends on the lines. Even the healthiest nails probably appear to have lines, whereas folk like me have noticeable ridges that are sometimes inflamed underneath. When your nails are splitting both vertically and horizontally, you know you have problems. Again, I think this is a sign of medical science not having a clue about early indicators of chronic illness. Claire Last edited on Mon Jun 22nd, 2009 21:55 by eClaire |
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Sarah Jane Member
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The articles I was reading did mention that colour changes or inflammation at the ridges were indicators that something more serious was going on, whether the lines were vertical or horizontal. What they seemed to be saying was that very minor vertical lines are nothing to worry about, whereas horizontal lines seem to always indicate an issue, whether those lines are minor or not. I have no idea what science was used to back any of that up- it was just a cursory search. |
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Deb Grabetz Moderator
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Sarah Jane and Claire, This morning I had some research energy and decided to see what I could find about fingernails. My fingernails are incredibly changed, so much so that this has been on my mind lately as to what healing is going on! My thinking is that I've not had nails like this since my 20's, as I posted earlier. It was not unusual back then to get compliments on my nails because of the way they looked. Of course I made a huge mistake by wearing acrylic nails, with my body fighting sarcoidosis all these years. Ugh, the bacterial load I added.So, here's the clip that I found the most interesting in regard to healthy nail growth... What Makes Fingernails Grow? "If you’re concerned about how to make your fingernails grow faster, it’s important to understand how fingernails grow in the first place. Fingernails are composed of protein fibers called keratin which is the same protein hair is made of. Growth occurs from the moon shaped area seen at the base of the nail which is sometimes known as the growth plate. As the nail grows, cells from the matrix multiply, mature, and die." "Another consideration is your general health status. A variety of underlying disease states can slow down fingernail growth and make nails more fragile. These include kidney disease, thyroid disease, and a host of other medical conditions. If you’re concerned about nail growth and are experiencing other symptoms, a few lab studies might be in order to rule out underlying health conditions that could contribute to nail problems." |
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Sarah Jane Member
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Very interesting! Thanks for the info, Deb. |
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eClaire Member
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Thanks Deb. Hmmm...I was a premie and so have small nails and no moons. My nails grow fairly quickly, but are very fragile. What's weird is that my hair was always incredibly healthy looking and grew quickly until a couple of years before total disability. Indeed, my hair growth slowed with total disability and I noticed that in year two of the MP, my hair grew faster. I've always wondered how my nails could be so lousy my whole life--just getting worse with age and health--while my hair could be so great for so long. Given the state of my nails my whole life, it is obvious that SOMETHING was going on. Claire P.S. I don't know if this is an improvement or unexpected IP, but my freckles are returning. I always had a smattering of freckles on my arms and neck (less elsewhere). Now they are back. Unfortunately, 4 small age spots also appeared on my left arm, which has me thinking that all of this might be unexpected IP versus improvement. Last edited on Sun Jun 28th, 2009 21:27 by eClaire |
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Sarah Jane Member
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I've also noticed a change in skin spots since being on the MP. I have a few small new ones (they're all benign) and one that has shrunk by half. I've also noticed little freckles popping up here and there and then sometimes they'll disappear (all the females in my family freckle easily, but usually in the sun and we've been avoiding that for 2 years now). And some of my little scars (I scar really easily from every scratch and always have, so there are plenty) are fading. |
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Alayne Member
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I found new freckles occurring on the sides of my face last year. Pretty much where pregnant women often get pigmentation (from what I've gathered from women who've been pregnant - not a study). Some of the freckles were more blotchy than circles. Normally I'd had gotten something like that from too much time in the sun (I'm very fair), so naturally I was surprised. However, now I'm in the daylight a lot more than last year and the spots are not only gone, but haven't recurred. I've worn Zinc Oxide the whole time. What this says...I don't know. I didn't feel worse for the blotches. In fact, I'd rather take a blotch on my face over hip pain any time. As for my fingernails - they're still extremely ridged. Vertically challenged on the most part, but the thumbs have little mountains, valleys, and of course ridges. Right now my toenails seem to be growing faster than anything. What a difference to my life! I get to cut them once to twice a week. Just what I was looking for when I signed on. LOL. In the end, I will admit that my hair is not getting any less gray, which at times bums me out when I read about others growing new darker hair. <sigh> Mine certainly grows, but is less curly than it used to be, is holding the gray with an iron fist, and grows more slowly (which saves me money at the hairdresser!). So, there are a few silver linings in all of this. ~Alayne Edit: Ah, but this thread is about unexpected improvements. Well, then I will tell you I was completely pain free for over least three hours today. I went for a long walk on the beach, plus jumped from big rock rock on the marina, looking for sea creatures. I felt like the little old mountain goat I used to be. My friend said I looked perfectly normal and full of life. He couldn't believe it. HA! This is coming from a wheelchair or bedbound woman who started the MP 3.5 years ago!!!! And who still looked like an 90 year old lady getting up from a chair just a month ago. Call me gimpy until now. Quite honestly, nor could I believe it. I had balance, strength, no pain, and sticky shoes soles that let me run from giant rock to giant rock. I felt about 15 years younger. It was lovely and overcast, which made it all the better. I held out for over 6 hours, then wanted to go home. Took a 3 hour nap and here I am, still awake. Yeah, didn't quite mean to throw a pseudo sleep schedule off, but what the heck. I had GREAT day! It was really something after all this time. Totally pain free for over 3 hours and could run the rocks! I found a stunning starfish too. Wow!!! Last edited on Wed Jul 1st, 2009 10:50 by Alayne |
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eClaire Member
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Alayne, I am so happy for you that you had your day at the beach and felt so well! When we have been bedridden and housebound, having days like this are like receiving little miracles. I sometimes forget that just being able to sit up in a chair for more than five minutes or a recliner for more than 20 is something I could not do pre-MP. While grateful, if you are like me, you want More! We want more! Congrats again. Claire |
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expate Member
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Alayne, what a wonderful entry. Thanks for sharing.dette |
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JanEE Member
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Alayne, I know exactly how you feel. It's indescribable and wondrous. I had almost a week of that once in phase 2. Even time expanded. While I've had some good days I haven't had anything quite like it since, but I hold out hope. To me it was a sneak peek of things to come. Recently, I had something odd happen that kind of startled me. It happened so quickly that I didn't fully realize what took place until it was finished. I was at the checkout in the grocery store and returning an item. She asked me if I wanted a refund or did I want to go get another one. I said I might as well get another one, so I turned and suddenly something in me said run. But as quickly as the thought came---the thought went, and I just settled for walking fast. I hadn't even been feeling that great up until that moment, but walking fast felt good and nothing hurt. I was kind of stunned. Running is something I haven't done for a very long time. At 75 I thought my running days were over. It made me wonder if I would run again at some point. So, congratulations on your day at the beach. I hope you have many more. Jan |
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Sarah Jane Member
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Alayne, what a wonderful post! I am SO happy for you for the day at the beach, and the 3 pain-free hours!!! Precious, aren't they? Precious... (my Gollum impersonation ). What a fabulous break from daily drudgery, and I'm very glad to hear that you've improved so much since first starting the MP! Surely a sign of more wonderful things to come. Jan, I've always loved running but have been frail and easily tuckered out since I was a kid, so I never really ran much (my older sister ran everywhere, she had two speeds- running and asleep, lol). Last year, around February, I was able to run on our treadmill at 7 miles an hour for 5 min or longer (as part of a half-hour walking/running workout), whereas now I can't take the stairs without feeling winded and completely trashed. So perhaps that was my window into what progress will look like for me further down the line. I'm sure one day we'll both be running fools- going as far and as fast as we like and feeling fabulous. Claire, you are definitely right. The more areas of progress we see, the more we want. Luckily, we're slowly but surely moving in the right direction and we all have many more improvements ahead of us! |
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Juanita Member
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A mole I've had since I was 12 just fell off. And a flat wart that's been coming and going for 10 years finally disappeared. And for the first time since I got sick, the heels of my feet are smooth and crack free. Darn crack. So addictive. Tell your feet. Just say no. |
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kenc Member
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Deb, When I've had a bad experience, like having to go to the hospital for a blood transfusion or rehydration, a horizontal line appears across my thumb nails. Gradually with nail growth this line moves outwards until it is gone. This reminds me of the rings of tree growth. Narrow rings indicate poor growing years and wide rings indicate good growing years. I've been able to determine the date of past traumas by measuring the position of these lines. My thumbs have also had vertical lines and a rough appearance. Now they are smooth and shiny. Perhaps this is a sign of progress. Ken |
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DNStog Member
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Juanita @@@ ---Rolling over laughing..Donna |
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eClaire Member
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About two months ago, I got so tired of my almost non-existent eyebrows (they are there, just not noticeable enough to make much of an impression) that I went out and bought an eyebrow brush (goes on with a brush like eye make up). Then, I mentioned it to my mother, thinking that my eyebrows had always been like this with me just having to pluck the stray ones. My mother said, "No, you had dark eyebrows when you were young. Men's eyebrows get bushier with age and women lose theirs." Lo and behold I went out and looked at my high school graduation picture in the living room and there they were. Perfectly nice and face framing eyebrows of presence. (With the eyebrow brush, I've noticed having eyebrows makes me look more youthful... either that, I can't see that it makes me look foolish to gently highlight what I do have due to Th1 poor vision ).At any rate, tonight I looked in the mirror and my eyebrows are thicker. Not only that I've had to pluck four stray hairs. I haven't had to pluck my eyebrows at all for about 10 years (like the hair disappearing from my legs and such). So EYEBROW HAIR, an unexpected improvement. Who would have thunk it? Claire |
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Deb Grabetz Moderator
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That's a good thing! I want some....!!!!!! |
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k Member
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Further to Eyebrows....Eyelashes Okay, so the objectivity of this assessment is questionable, but I reckon my eyelashes have improved. I seemed to go through a stage where I would lose a lot of eyelashes. Never enough to make my eyes look weird or anything, but they kept getting in my eyes. I can't say that I've ever paid that much attention to my eyes in the past (I don't wear eye makeup), hence this isn't particularly objective. But it does seem to me that I have more eyelashes than previously and they seem to be thicker (you know, somehow healthier looking, rather than 'spindly'). Now, if some of the rest of my body could catch up with the great progress my eyelashes have made!!! ; ) regards, k Last edited on Fri Jul 31st, 2009 10:45 by k |
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Cynthia Schnitz Board Staff 
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Gee, I haven't had to pluck eyebrows in years now too, and yes they are looking very thin and pale, and probably have more white hair percentage than my head. But I have had, for a number of years, hairs coming from no where on the lower edge of my chin that look exactly like eyebrow hairs, and I pluck them at almost the rate I used to have to pluck my brows as a young person. Hope these will go away. Nine months on MP and counting, Cynthia |
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expate Member
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I am going to chalk this one up to the MP. Improved ability to swallow! For years and years I had difficulty swallowing. I thought it was due to anxiety. I thought the anxiety was due to trauma (emotional/psychological). Now surely, that is true to some extent. I have been in therapy for eight years now with great success. The swallowing issue got better over time with a marked improvement after an important therapy breakthrough regarding after-effects of rape. That said, I still would have issues from time to time with swallowing and feel like I would choke. I have always been a slow eater, ridiculously so. At home, I'm always last to finish. My very polite children will sometimes ask to be excused because it really is excessive. Often when eating out, I just give up and get the remainder of my food to take home. Last night, my family and I had dinner at a very nice restaurant in New Orleans -- appetizer, salad, entre, dessert after. We all joked about how we must not have liked the food very much as out plates were practically clean at meal's end. Then my daughter noted as she took her last bites that I was not last to finish. I practically started crying. On reflection, in the past two days, I was getting some ucomfortable tightness in my throat. 20mg of Benicar SL cleared it up. I'm thinking that it was IP and that my throat issues involve th1 of some sort. Here's hoping from someone who loves to eat! dette |
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eClaire Member
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dette, I am so glad for your progress. I think difficulty swallowing is a relatively common symptom for chronically ill people. Occasionally I have this problem, but more often it is swallowing saliva (I almost wrote salvia, which would be difficult to swallow!) into my lungs out of the blue. As my mother ages, she is noticing this particular symptom more. So I figure it is Th1 as well. At any rate, good for you! Claire |
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Lee Member 
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Ladies ...I can remember early on in Ph2 and maybe Ph3 I would get this strange horrible tightening in the throat! It would come on quickly especially when stressed and trying to talk at the same time. I do not associate it with swallowing directly but it would be very hard to swallow once this was happening? Anyone else have this? Lee |
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Deb Grabetz Moderator
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Yes, Lee I've experienced the very same thing and it is very scary the first couple of times it happens. I'm sure Odette is right on when she says there is Th1 involvement! |
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Freddie Ash Member
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HI ODETTE This is Fred in WV. I started to have swallowing problems in the mid 1980s. It got so bad I was sent to an ENT who went down with a light and he told the sarcoidosis had caused my esphagus to became hard like a garden hose. I lived with it until it got so bad I had to have my esphagus stretched in Nov 1999. I did not have any problems untill I was on the MP for a few months, IP I think also. But that has gone away now and I have not had any more problems with that. I do seem to get strangled when drinking but on that I have done that for years and I figured it was just the sarcoidosis cause the strangleing. When I was having so much trouble with the swallowing I would have to go to the bathroom and throw up to get it out becasue it would not go down. I was lucky that I was always able to get it out and not stuck. I have heard of some people having to have to go to the ER and have it pushed down at the ER. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Deb Grabetz Moderator
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Yikes Freddie, when I read your posts it reinforces just how important the MP is to us all! |
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expate Member
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Wow, it's amazing how common this is. Yes Freddie, there have been times when I felt I would gag, but it never got anywhere near the point you are describing. By the way, It is always great to read of your progress. Well, thanks for all the input. I don't feel so alone now. dette |
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expate Member
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eClaire wrote: Occasionally I have this problem, but more often it is swallowing saliva (I almost wrote salvia, which would be difficult to swallow!) into my lungs out of the blue.Oh man, that happens to me too. I makes me feel so stupid, like geeze, Odette, you can't even swallow your own saliva! dette |
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eClaire Member
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Yeah, I feel stupid too when that happens, but the pain I feel when it happens quickly displaces those feelings. |
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Freddie Ash Member
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HI ALL This is Fred in WV. Thank you Deb & Odette for all the kind words. I have been throught a lot in my life time with the sarcoidosis. Sarcoidosis and I became pals. But I have been trying to find a way to get him out of my life. A cardiologist once told me that I should get a professional book writer and write a book about my life with the sarcoidosis, doctors, and hospitals. One thing for sure is that the Marshall Protocol has made a great change in my life for the better. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Juanita Member
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Sarah Jane's hospital stay with all those chemicals that someone with MCS can't cope with.... she did really well. Still reacted, but the response was less intense than it has been doing in the past. And now that she's home, the improvement is continuing. It's one thing when it's someone you don't know who gets better on the MP, but this is inside our own family. And she and I have the same illnesses, so if she can get better, so can I. We are so thrilled. |
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Deb Grabetz Moderator
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I realized in the past few days that for a few years before being diagnosed with Sarc, I would have spasms in my lower bowel area and often. If there is a true definition of this symptom maybe it is what spastic colon would be defined as. Since being on the MP, or over the last year that I can remember, this symptom has completely disappeared. One of those things that silently went away before I even realized it was another problem I had been silently dealing with! YEAH FOR THE MARSHALL PROTOCOL!!! |
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Juanita Member
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That's good news, Deb! Good for you! May that happen for me in time also. I pass gas less. That's an improvement. |
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Juanita Member
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Odette.... you are something else, eh? Wow. What a brave, courageous woman you are. I'm thrilled that the MP is working along with your successful therapy to help you regain your full life. You deserve the very best. |
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expate Member
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Thanks Juanita. It's certainly a journey. I am so much less symptomatic than most here, yet... Anyhow, I'm doing pretty well now. All of those directives from on high about how we need to make this treatment livable for us and that the main thing is to keep IP to manageable levels, well, I've taken it to heart. Each of us has our own level of disease, infection, debilitation, etc. So, I figure, as I look back at the last year plus, that I served my time and that I will find a more integrated path forward. I started Weight Watchers almost 3 weeks ago because the 20 pounds I put on since strting the MP and the 10 extra pounds I was wearing before that became unbearable to me. So, I'm integrating the MP food restrictions with WW and going to Zumba and feeling alive again. All of this while not yet acheiving the maximum dosage of phase 3 antibiotics. But it's still good. I still notice IP/changes happening. I really ought to keep a journal of it all, but between keeping track of WW and having a new boss and doing therapy and DANCING, I'm letting it go. Whew! Just checking in and giving reply. All the best. I'll write more fully when I can. Love to all, Odette |
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Deb Grabetz Moderator
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Odette, Keep us posted on Zumba! I think that looks like so much fun. My energy is not yet to a point that I could keep up with such exertion but I have been so interested in it, ever since I saw it demonstrated on Good Morning America! I can see you now! WW is a great way to lose weight. I've used it a couple of times after babies and really got my weight off...unfortunately it found me again...I've been fighting it big time since the first time I flared, so it's obvious there is some connection. Either that or the bugs make me hungry...lol! Keep up the great work!Deb |
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Deb Grabetz Moderator
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My back pain is so improving....IT IS WONDERFUL!!!!!!!!!! |
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Juanita Member
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Zumba! Go, Odette, go!!! I can't get my weight to drop more than 3 pounds since I started.... I can't remember if this is the place we do or do not mention our big boys abx. So I'll just say... Z. And then when I did.... C. Add Sarah Jane bleeding and all that stress. BOOM! More Juanita than the world has seen in years. Last time I was this big I was going to the hospital to give birth. Just ONE more thing to be patient with!!! HUFF!!!! |
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Sallie Q Board Staff 
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Juanita, they don't call us patients for nothing, you know I find I eat less and herx less when I have as many small meals a day as I have Benicars, so that is 4 or 5, even 6 at times Not only have I trimmed down what I think is partly water stored in cells to dilute the nasty cwd die-off products, but it has gone from the Buttes as well, there are 2 skirts I need to pin a fold in, or I wind up wearing it around my ankles Wow, k, I used to often get eyelashes in my eyes, have not thought about it for a year or more ! PS on the family front I'm the patient one, D.H. is definitely not in the running |
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Deb Grabetz Moderator
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Juanita, I got a chuckle out of that "more Juanita than I have seen in years"....I have fought my weight up and down for so long now (way before MP) that I can't imagine what it would be like to be stable. Hubby now, eats constantly and looks like he did as a young man in his 20's. He is non-stop, his energy could be very contagious, if I could absorb it...and I guess on most days, I'm just lucky that I get the "spectacular view" that I do...poor fella, he is looking back at me! It's like my neighbor who outdoes himself on Christmas, looks like a runway in the neighborhood...I stopped being jealous of not having all the lights at my house and realized I'm the one with the great view...and he looks over at my pitiful display!!!! lol... |
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eClaire Member
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Gotta love that attitude Deb! |
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Juanita Member
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I'll have to try that eating trick, Sallie. Thank you for that! A simple solution, eh? I have a timer for my pills, so adding a bit of food would be no problem. If, however, I get bigger..... where do you live, dear? *tries to look innocent* You got lucky, Deb. In my case, Martin put weight on while Sarah was in the hospital too. All forty pounds that he'd worked so hard to get off. Bam! Back to the beginning. And just as he was starting to look like a Hollywood muscle man. |
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eClaire Member
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Unexpected improvement. I used to have hairy arms (sad but true ), however, as I got sicker the hair started disappearing on my arms and legs and eyebrows (I had already lost some hair on my head years before... luckily this hair loss did not speed up). Some of this may be menopause (then again, it may all be Th1).The hair on the first two inches of my wrists was breaking off so that that area was rough to the touch. Now, in just the last month, I've noticed a few eyebrow hairs that we not there before, my legs are indeed hairier (oh well), and the area of my arms made rough by broken off hair is now downy feeling again. I used to hate my hairy arms, and now I say, if it comes with better health, BRING IT ON! Claire Last edited on Fri Sep 25th, 2009 01:56 by eClaire |
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eClaire Member
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You know how you have improvements but you can't ever think of them when some newbie asks you? Well, I was clarifying a few things for a new, soon to be MPer when I was asked that question. I trotted out my little pitiful list. Honestly, I ought to right this stuff down. At any rate, I was giving written tips on managing anxiety IP and I mentioned how I discovered I could listen to talk radio like "This American Life" to help me calm down, and how surprised I was because I could not listen to music. I had not been able to listen to music for years. Well, THAT reminded me that I am once again listening to and enjoying music. No doubt you've seen me report dancing to a song or two. Of course, that means I'm listening to it as well. Claire |
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k Member
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Yep, me too can listen to music now! Well, not right now cos I'm herxing badly. But that is something that has returned that I couldn't do previously - it just "hurt" my ears and brain. regards, k |
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eClaire Member
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I read an interesting "factoid" the other day--something I'd read before but was reminded of it once again. It has to do with handwriting and the authentication of signatures and relates to an improvement that perhaps many of us will have. The author was relating that documentation specialists/hand writing analysts say that a person's signature after a certain age does not get better over time and this is one of the ways that you can detect a forgery. So for those of us whose signature reflected the aging our sick bodies were experiencing pre-MP, we ought to find, by my estimation, our signatures improving when we are well. We ought to defy what is thought to be a given. So to be on the safe side in states where wills are do not have to be witnessed, you will probably want to have your signature witnessed when you update your will if you have another, older will lying around with your old, decrepit signature on it. (Of course, I am speaking for myself. )Claire P.S. I think I have an old legal document when I was at my worst pre-MP and I'm going to compare that to my signature in a few years. |
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Freddie Ash Member
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HI CLAIR & ALL This is Fred in WV. I am glad you brought up this subject about the signature. This reminds me of the story about me when I was talking to Dr Marshall on the phone one day 3 or 4 years ago. I told him I was so nervous that I could not write out a check at the local store. I had to have the store write it out and I could hardly sign my name to the check. Dr Marshall told it was not my nerves causing it but the sarcoidosis working on the brain and the brain would not let me have control of my muscles. I hope this might help in some way to understand what is going on about the poor signatures we have. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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k Member
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Freddie, you're an inspiration. Wishing you all the best, regards, k |
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Juanita Member
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My brain is healing. I wrote my alumni report, I was so excited about this. The damage from my stroke just took a leap forward into improvement! *does the Happy Dance which involves a lot of hip wiggling, arm swinging, jumping up and down, whooping..... and then collapsing* |
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Freddie Ash Member
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HI ALL This is Fred in WV. Thanks K for the kind words. And Junaita way to go there. I am jumping up and down with you. Keep up the great work. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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eClaire Member
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IS THIS MY IMAGINATION? Prior to the MP, I could go 10 years without getting my teeth cleaned, as I had so little plaque... ever. I've had a tremendous amount of plaque (incredible really) since starting on the MP; it's been decreasing steadily over time, and in the last month to even lower levels. So what I am about to say is not this... as I did not experience this when I was producing no plaque to stick on my teeth. At any rate, when I brush my teeth, they are squeaky smooth. I am used to the surface of my teeth being a little rough. Has anyone else noticed this? Claire |
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k Member
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Plaque build up being discussed in Jason's thread.. http://www.marshallprotocol.com/view_topic.php?id=9326&forum_id=35&jump_to=186907#p186907 regards, k |
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Joyful Foundation Staff
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Sounds like an unexpected improvement Claire. |
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eClaire Member
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K, Wish I knew about the toothbrush mentioned in that thread when I was scraping my teeth three times a day! When Amazon gets it back in stock, I may purchase one, as that would be better than taking a metal scraper to my teeth (something that had to be done because I couldn't afford to get my teeth cleaned daily or even monthly by a hygienist, which is what I would have needed up until a few weeks ago, and I was too sick to leave the house anyway). Claire |
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Dr Trevor Marshall Foundation Staff
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IMO The Ultrasonexx toothbrush will never be back in stock at Amazon. As far as I can tell the US manufacturer closed its doors and sold the technology to its Chinese manufacturer. Since the US manufacturer holds a patent on the use of true ultrasonic technology in a toothbrush, no other manufacturer is going to bother to make such a brush. They cost too much more to make. The Hong Kong outlet seems to be clearing out their stock, as is the US wholesaler. |
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Adrianne Member
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Oh my, Claire, it is good to hear about you are able to get your teeth smooth and clean with brushing! I had been going nuts trying to keep my teeth clean. They get so gunky all the time. My Sonicaire toothbrush, or any other toothbrush for that matter, doesn't even come close to doing a good job. Out of desperation I tried something. I purchased some synthetic exfoliating bath mitts at the Dollar Store. I use them to polish my teeth squeaky clean after brushing. They do a really great job and I am quite pleased. I don't like the constant build-up of plaque (biofilm accumulation) but if it's due to bug-killing I will gladly deal with it for now. |
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Adrianne Member
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And as for an unexpected improvement...........We have an small ionizer running in the kitchen all the time (to help neutralize cooking odors). Well, I just walked into the kitchen a few minutes ago and guess what! I could HEAR it. I haven't heard that thing in a couple of years. Guess my hearing is returning? |
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eClaire Member
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Yea Adrianne!!! I had not even hoped for better hearing. It almost seems too much to hope that the ringing will go away. (I've had it for over 30 years.) I mentioned on another thread that my reading vision has improved slightly. I still have to scrape my bottom teeth a couple times a week, however, I am just delighted that my teeth feel like this. They didn't feel like this when I had no plaque my entire life pre-MP. Even after the hygienist polished them after a tooth cleaning. So something is definitely up. Either that or I just can't remember that they were once better. (However, this feels way too NEW!) (It's likely that when my kidneys clear and I am able to start taking more abx, that I'll see more plaque again. Or that's what I think... I'll just have to wait and see.) Here's to more improvements! Claire Last edited on Fri Nov 20th, 2009 07:24 by eClaire |
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Deb Grabetz Moderator
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This last week something different happened for me...I was able to install a wireless printer/copier/scanner connecting to my laptop with no frustration! Some would not think that much of an accomplishment but for those of us with Th1...you can understand *my excitment*! After the installation was completely done (and this included having to contact my wireless router company for info on my network password) I realized I had pretty much breezed through this installation, clear headed and not all dazed over at the end of it all... ahhhhhh...thank you MP!!! |
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eClaire Member
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Great news Deb! Well, even though I cannot imagine doing that particular task (I have yet to figure out how to make the fax and scanner part of my printer work), not only did I remember how to set up a basic algebraic equation the other week (out of the blue and something I could not do 25 years ago), my mother's phone went out and I had lost my cell phone the week earlier (well, I mentioned that my mind is still rather limited) and therefore did not have access to her cell phone number. Then all of a sudden I remembered her cell phone number. A number I had not punched in since inputting it into my cell phone four years ago. Amazing. I used to have quite a head for numbers (I once remembered a 15 digit account number at the end of a very busy day when I had thrown away the person's electric bill that she had paid for in cash) and it looks like that I might get that back. Claire P.S. I have never been able to put my pinkies in either ear canal... okay, I admit that I am weird , but I have tiny finger tips (was a premie) and that would be a convenient way to scratch and inner ear itch. Always one or the other ear canal was swollen... as long as I can remember. Now, both ear canals have not been swollen for at least four to six months. And my inner ears are not itching much at all (think that was Th1?) Now I put my pinkies in my ears because I can't believe I can!Ear buds have been excruciating painful and I imagine that I might actually be able to wear them now. Last edited on Sun Dec 20th, 2009 17:03 by eClaire |
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Deb Grabetz Moderator
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Claire, There is really something wonderful when the realization happens that we've done or remembered something that would have been difficult before...Here's a funny one...many years ago I went on this kick of getting rid of my credit cards...but out of fear I decided I better "memorize" my Visa card in case I needed to order something by mail...hahha! Yup, still remember that one even though the account has been closed for years! I was a horrible math student...and yet worked most of my adult life in Sales working with glass sizes all day long and I was very proficient at it. It was more visual and repetitive, rather than calculating and I have a very photogenic memory to this day. Funny stuff...I even know when my passengers move from one seat to another...well, nice to know some things work!!! ...rofl... btw...I may have been horrible at math...but had enough sense to marry a smart guy who is great at math...our son is a top notch CPA!!! lol!...we know where he gets it from!!! |
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Lee Member
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I just have to report this. I am in the mountains at my mom's house and we have had alot of snow! I am not used to this much heavy wet snow ... My pups were mortified to have to crawl through or over nearly a foot of this! I hurriedly bundled myself up in my mom's heavy winter clothes and even found her snow boots fit me ... I located a light small shovel and went to work digging us out. I worked and worked till the pups would dare come through my path! I slipped and slid and even fell once on my behind, but the wonder of it all I DID IT! All alone I managed to dig a nice path for the pups to find a barren patch of grass under huge evergreen, much to their relief!! I was barely winded and felt wonderful!!! I did feel the effects of snow glare but manged to grab a pair of regular sunglasses that worked fine. Today I am a little sore from this work-out but very proud that I managed without hurting myself. This is wonderful! I am feeling my muscle tone improve. I am slow to recoup but when I do I will be good as NEW!! Feeling Strong! Thanks MP!! HappY HolidayS to ALL!! Lee |
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Dr Trevor Marshall Foundation Staff
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Deb Grabetz Moderator
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Lee, Wonderful to read of your accomplishment!!! Something that seems normal to so many and now look at you! I was thinking as I read your post that shoveling snow is not an easy task and you managed to do this and barely winded. Just thrilling to read! Yay! Take care Lee and Happy Holidays! Deb |
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Lee Member
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Thank you everyone! I must add this snow is addicting and I go out constantly! Everything is fresh and new as we get a little fresh powder daily!! I fell again on our wooden wheelchair ramp that was built for my mom and now being saved for me. Not only was I really not hurt ....but guess what??? Hubby and sons are to dismantle this during the holidays as it sure looks like I will not be needing that thing for YEARS if EVER!!! Maybe I needed this snow to prompt me to go out and do more than I thought I could! Ever grateful, snow covered, Ho! Ho! Ho! Lee |
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Joyful Foundation Staff
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HOHOHO... |
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Deb Grabetz Moderator
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This seemed like a good place to post this--- yet from the beginning I have had a hunch that maybe this would happen for me...so it is and isn't *unexpected*!!! In other words I thought the MP may just do the trick... I've posted this on other threads...but here goes...in 1990, I lost guessing about 80% of the vision in my left eye...and how lucky that I did not have this hit both eyes or I would have been legally blind...since being on the MP my eyesight has now reversed to being able to see 80% out of that left eye with maybe only 20% damage. This has been getting better within the last three months even. I have closed my right eye for years, always hoping that something miraculous would happen...so I know how little vision has been there for the past 20 years...and sure enough the MP is working on something big for me! My opthalmologist assured me this was a pit in my optic nerve and that there was nothing that could be done to reverse this. Yeah some pit...There must have also been bugs living in that pit Scary when you're only in your 30's with one good eye! One of these days...I am going to shut that right eye and see it all again!!!! |
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expate Member
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Hi All. The following is copied from my progress report in the 2/3 forum. The bolded bit is why I am posting in this thread. I'm pretty darn excited about it. Well, I had my first accute illness since being on the MP. I got a cold/flu. I had massive congestion and runny nose, coughing (only due to congestion - never settled in chest) and 24 hours of fever. I used sudafed for the congestion and got through it no worse for the wear. Still no knee pain, so I intend to start back to exercising next week. I HAVE to get this weight off or I will have nothing to wear. Anybody else experience this? The spider veins on my legs are diminished. I'd noticed it a couple of months back but figured it was just my imagination. But now, the ones on my left leg are barely noticeable. The ones on my right leg, which were the worst, are definitely less pronounced. I'm not overly vain, but this is cerrtainly a kind of vein I can do without! Well, I got bloodwork done and... drum roll... my D - 25 is 9 ng/mL!!!! This after having the odd shrimp, catfish or oyster dinner, even salmon over Christmas. Also, an omelette here and there. And I have had a pot or so of yogurt that was D fortified. I still am careful about fortified milk or cereal, but I don't worry about pasta, etc. So my D, 25-OH, D3 is 9 nl/mL and D2 is <4. OK, if I do this right a photo of me (and my family) will appear - me outside in glaring snow without NoIR's. *crosses fingers*  |
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eClaire Member
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What a fabulous report! Hope the knee pain stays away so you can get back to exercising. Out in the snow without NoIRs! Yeah! Claire P.S. Your spider vein report gives me hope for the couple spider veins on my chin (roscea related?). I was thinking that when well, I'd have to have them seen to, but now maybe I won't. P.P.S. Beautiful family! Last edited on Thu Feb 11th, 2010 19:07 by eClaire |
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Freddie Ash Member
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HI EXPATE This is Fred in WV. I want to thank you for that great update report. Also agreat looking family. You keep up the great work and keep on MPing. Yea! Yea! good old MP and Dr Marshall. It is the greatest!!! Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Deb Grabetz Moderator
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Hi Odette, Great picture...but I am still looking for the "extra weight" that you need to lose???? I didn't see any???! It is so nice to see these accomplishments for you, you've worked hard to get here and been a real trooper, you are deserving! Take care my friend, Deb |
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HeatherK Member 
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Hi Odette! What a beautiful pic of you and family, so encouraging to me and I'm sure many others ! Like Deb, I dont see the extra weight!! I totally forgot abt my spider veins! Just checked and some are still there but not as prominent as I remember 2 years ago.. neat... I've got 29 months in on protocol, so heres to continued improvement for ALL of us! Thanks for sharing this! Heather |
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Juanita Member
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Wow! Gorgeous family, Odette!! And great news about your 25D! Good for you! |
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Sallie Q Board Staff
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& lookit that smile |
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Juanita Member
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Unexpected improvements for me.... and it's why I haven't been here for so long, plus am 3 months behind in my personal report posts (but totally up to date in my computer log, so I'll fix that soon).... I suddenly had too much mental acuity and energy. I didn't know what to do with so much mental enthusiasm and clarity. I haven't had it in... well..... geeze.... at least 10 years. Maybe 12. So I started a knitting business (which I'm still working), a consult business (which I've dropped), and began learning how to write film scripts as an opportunity dropped into my lap for being optioned. Suddenly I had more things to do than I had time or wellness in the day and it captured me. I was enraptured with the excitement of feeling so mentally well and finally being a tiny bit a part of the world again. So naturally, as you ALL understand... I over did it. Pushed myself into a depression and exhaustion. Chased my tail until I wore a hole in the carpet. But that's okay. Who wouldn't go a bit nuts when gifted with a bit of improvement? And now I'm ready to learn a new level of pacing myself. It's all good. *smile* |
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JanEE Member
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Juanita---you're back! Hooray. I too have missed your cheery countenance, and have been hoping it was for good reason---which it seems it was. What a wonderful "sudden surprise". I know I usually can't hold back when my brief "feel good" times hit either. You may have overdone it, but what a great memory to have in your MP bank. YAY!!! Great to hear about all your accomplishments and new opportunities. Is your knitting for Etsy as before? Or is this something new? And writing film scripts really sounds fascinating. I've loved movies, and learning about their various production methods, my entire life---and also wished that I could have been in the industry in some way. Keep on keeping on. Hugs, Jan |
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JanEE Member
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Odette, I almost missed that fabulous picture of you and your family. What a great picture, a great family, ---and a great snowoman too! Jan |
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Freddie Ash Member
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HI JUANITA This is Fred in WV. All this energy you are getting now from the Marshall Protocol sounds like you are having an "allergy reaction". Is not that what the doctors tell us about the meds when we have a reaction to them. Ha Ha!! Sounds great to me, keep up the great work. Yea! Yea! to Dr Marshall and the Marshall Protocol!!! Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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tussilago Registered
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three months into treament my my nails are getting stronger. I put this down to unexpexted improvement cause this is not why I do the protocol. I had read of others that got thicker nails so I was looking out for it to happen. |
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Deb Grabetz Moderator
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Tussilago.... What an interesting post! I just realized after reading your post how strong my nails are again! Thanks for bringing this to my attention! In high school I had THE longest, most beautiful nails when others would say how theirs would chip and really had lost this sometime in my early 20's. |
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eClaire Member
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My nails are stronger, but have a long, long way to go. At least they are no longer splitting down the middle or straight across down into the nail bed. Just thin and brittle and heavily ridged still. What the improvement means is no more nursing painfully damaged nails. You guys give me hope that one day, I'll have decent nails. Claire |
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Cynthia Schnitz Board Staff
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Mine have been back and forth a few times. Seems the center of a few of my nails are now growing out thinner. Cynthia |
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Lee Member
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My nails are really growing lately! I even have to trim and file them. Funny as I had to buy manicure tools just this week .... My hair is better too. It is actually growing too! It is still terribly thin but with the added length I can just double my pony tail! Looks thicker that way!! Lee |
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Deb Grabetz Moderator
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Heh Lee...Have you ever tried this? I pull mine up on top of my head in a coated rubber band when I go to sleep. I swear it makes my hair fuller in the morning! Hahahah....but I must admit my hubby doesn't enjoy the view Happy Easter Lee! |
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Aunt Diana Member
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My toenails have become so strong that they remind me of horse's hooves. It is impossible for me to cut them. I either have to go to a professional or ask my husband to do it. My fingernails are strong as well but nothing like the toenails. I used to need nailpolish to stregthen my fingernails, but I haven't worn nailpolish for two years and my nails are stronger than ever. My hairdresser also commented on how thick my hair has become. I've always had plenty of hair but these days I need to have it thinned every few weeks. I even suspect the color is coming back a bit. Not enough that I can stop coloring it, but enough to notice. I also have realized that by the time my mother had reached my age she had developed a "dowager's hump". Fortunately I have nothing of the sort, in fact I suspect I'm a wee bit taller than a few years ago. These are all little things but they are nice little things. I can remember a ten year period in which I had a constant split in my right forefinger (from a splinter that had infected that finger) Nothing I did would make it go away. Until, of course, the MP. Have a Happy Easter Everyone. |
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eClaire Member
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Those are all nice improvements Diana. My hair is growing faster, but so far I haven't been able to tell if the area where it thinned has thickened yet. I love these reports because they definitely show a reversal of the disease process. |
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Deb Grabetz Moderator
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Aunt Diana, Isn't the hair a wonderful thing? I found a picture of myself that I had given my hubby when I was a sophomore in high school. It is really cute of him to keep in his wallet and I was absolutely amazed at the texture and color that I could see in the pic. I realized how much my hair had changed over the years and have often thought it was due to coloring, bleaching etc. To be honest my hair has over the past year changed so nicely for the better. It is very noticeable. I have let it grow out for my daughters wedding so beginning to notice even more the slowing of grey growth and the much healthier state! Good Stuff! |
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Deb Grabetz Moderator
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For the last 20 years I have been dealing with vision loss in my left eye, which left me about 80% blind in this eye. May as well call this *blind*! I've reported improvement since being on the MP previously, which I would guage approximately now a 20% blindness and 80% visibility. A flip flop from where I was. I lost my sight back in 1990 when I first flared. Interestingly over the last couple of weeks I have noticed another change with this eye. Although the vision has held at 80% visibility, a sort of grayness that I have always had with the vision has cleared and I'm seeing the same colors that I see with my right eye. I have always seen colors in the left eye but as compared to the right, it is as if there is a gray film to the left that gave a mild discoloration to what I could see. Of course the discoloration was never a bother, just another annoying symptom that I added to my seemingly never ending list! It was a bit of a surprise but a nice surprise as this tells me there is still healing going on with this eye! I am forever checking my left eye for progress as I have hoped ever since starting the MP that I would see healing. My right eye certainly has compensated for the blindness in my left all of these years but I'm sure it is what makes my eyes tired and also made it hard to read. Whether it be neuro or eye improvement, I can sit down and read a couple of chapters of a book now with ease. Prior to the MP a couple pages would do me in and I would be drowsy, even if I had the ambition to want to read. I'm forever covering my right eye with my hand to see if I notice any changes...or closing my right eye to see what my left is up to. |
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Sallie Q Board Staff
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Hard work Does bring rewards after all that's great, Deb (color TV does have some advantages, particularly for the nature docos) wonderful Juanita, perhaps you'll be off to H****w**d on business some day and get to see some of the California people Fred, d'ya want Juanita to call you as consultant for comedy tips? ladies, Nails and hair I can relate to. Thought I was going bald over the years, the white hairs have stopped dropping out which makes my hair look darker although still sparse. My nails used to be corrugated crosswise before I did the anti-Candida 1 year program with Nystatin. On MP nails are definely tougher. I have to sit in the bath to soften them up before I can trim them. Thankyou for introducing this topic, 'Tussi..' Sallie |
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HeatherK Member
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Hi everyone! I also am experiencing stronger nails, especially toenails, which are thicker than I can remember for a longgg time. My hair too has come in so much thicker that I am trying new updos with it!! It is still fine texture as always but the volume I think has tripled to what I had pre MP which was really getting thin. In Phase 1 I noticed it stopped falling out, and now 30 months on MP, I have a lot of hair, just keeps growing and the gray is not as pronounced, yet I look grayer now as I had stopped colouring after starting the MP. Pre MP , I had a totally white section coming out of the crown of my head, while the front had not grayed. This white section now just looks steel grey. So the grey is darkening. I am tempted to start covering the grey again as I am so enjoying this bulk of hair! and with my skin tone, grey makes me sallow. I am an Autumn, fair skin, and had red highlights in brown hair originally. What I am puzzled about is the loss of CURLY hair, it has straightened, just barely has a wave , and I used to have very curly hair , lots of frizz too in humid weather. Because of the bulk of hair I do have its Ok to deal with, but the curl I had actually helped hide how thin my hair used to be. Have any of you experienced loss of curl?? thanks! Heather |
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Aunt Diana Member
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Hi Heather, I'm not really sure if I've had a straightening of my hair...but I think you might be onto something. Since I don't take care of my hair the way I used to, a shampoo every day, it's hard to tell what is causing what. But I used to be a "frizzbomb" and, now that you've pointed this out, I realize I'm not anymore. And Deb, I'm glad to hear of your eye improvements, since lately that's been one of my most nagging symptoms.....blurred vision in my right eye as well as a blindspot that seems to come and go. I'm optimistic that these things will resolve in time. Let me ask: do you have any sympathy for the lonely bacteria? I sure as H... do not! |
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Aunt Diana Member
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Hi Heather, I'm not really sure if I've had a straightening of my hair...but I think you might be onto something. Since I don't take care of my hair the way I used to, a shampoo every day, it's hard to tell what is causing what. But I used to be a "frizzbomb" and, now that you've pointed this out, I realize I'm not anymore. And Deb, I'm glad to hear of your eye improvements, since lately that's been one of my most nagging symptoms.....blurred vision in my right eye as well as a blindspot that seems to come and go. I'm optimistic that these things will resolve in time. Let me ask: do you have any sympathy for the lonely bacteria? I sure as H... do not! |
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Cynthia Schnitz Board Staff
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I actually measured, a few months into MP, the circumference of my hair bundle just below the band I have used for the last 15+ years to hold my longish hair behind my head and out of my sight because I could stand looking at the measly little wisp of hair I had. So, 7 months later I remeasured, and the bundle had swelled to 50% more cross-sectional area. My hair, which would start to disintegrate at about shoulder length, is now well down my back, and I think the reason for that is that it is growing faster, as the tips of my hair are probably still preMP hair. I used to gather the hair around my face up into a pony tail behind my head as a way to wear my hair down, but keep hair from falling in my face. I hadn't been able to do that for 15 years because the hair around my face was too short to reach. and what would make it to the back of my head wasn't enough to fill the smallest barrette. Last nigh I finally could wear my hear that way. When this hair around my head gets long enough, it sell the the bundle even more behind my head. My hair was very straight for most of my life, and always worn long (until it started to disintegrate at such a short length). But for many years now it has been frizzy wavy, and that is still the case. But I truly expect that to change back to smooth and straight, with a slight flip at the end, as years ago. Most of my improvements are 'unexpected', but one recent one is really a bit surprising because I just assumed it was a characteristic of old age. I could never sleep on my back with any part of the pillow at or below the joint of the neck that does the most flexing when one nods one's head down, with chin on chest. Anything under this joint, or below, would cause aching in that part of the spine, even the edge of the pillow without any filling in it. I used to think about all the dementia patients suffering this discomfort because they could not communicate with the staff what was bothering them. Well, it's gone. I guess not everyone gets this with old age after all. Cynthia |
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Aunt Diana Member
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For the past few days I've been experiencing a dull ache in my left leg, it would build during the day and by the time I was ready for bed would be throbbing. It was starting to worry me. Along with this I have had some edema which is unusual for me, and to top it all off I'd been having lots of arrhthmias, in the form of extrabeats. Last night I was worrying a bit about all these symptoms and came to the conclusion I would call the cardiologist today and tell him I wanted to stop the beta blocker he had recently prescribed to me. (I suspected the symptoms were related to this medication-and I haven't changed that opinion) When I got up today I was happy to feel my heart seemed to have smoothed out again and the edema is gone. But, when I looked down at my legs to see my ankles I noticed that the bluish bruises I have always had on my shins (6x8" towards the front of shin) are clearing up. The bruise on my right leg is gone entirely and the one on my left leg is much lighter and now only about 1x2" in diameter. Now I realize that I've been having an IP and it has been clearing out whatever causes those bruises (at least I'm hoping that's what it was). Ill know in a few days if the heart flutters come back. Meanwhile, I've decided to stop taking the beta blocker and let the MP do it's work. I honestly can't remember a time that I did not have those unsightly bruises..now my legs are pretty evenly toned ....with just a few blemishes that I hope will also clear. "Vanity, thy name is woman". |
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Aunt Diana Member
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That's interesting, Cynthia...you and I most have been posting at the same time. These are nice surprises don't you think? I was just thinking of all my family members who blew me off when I started the MP, especially my sister, and how I wish I could tell them about these kinds of little miracles that keep happening. But, since they have not been interested in this all along' it is simply too difficult to try to explain these things to them at this point. (I suspect they would only "roll their eyes" anyway. |
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Deb Grabetz Moderator
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Aunt Diana, NO SYMPATHY FOR THE LONELY BACTERIA...NOT! THIS IS OFF THE TOPIC BUT AUNT DIANA I'M SORRY TO HEAR ABOUT THE LACK OF INTEREST FROM YOUR FAMILY AND THE MP...REMEMBER YOU HAVE A LOTTA FAMILY RIGHT HERE...THE DIFFERENCE? WE REALLY UNDERSTAND WHAT YOU ARE LIVING...AND WE HONESTLY CARE! SO I SAY...WHO NEEDS 'EM! AS YOU CAN TELL, I'VE EXPERIENCED SOME OF THE SAME |
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Joyful Foundation Staff
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Yes, Aunt Diana, we may be long distance and only connected via internet, but we do care... and hopefully you feel our love and joy when we are "together"! Deb, your caps lock on your keyboard got stuck ON. |
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Deb Grabetz Moderator
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Joyful, My caps ON get stuck when my thoughts become strong and meaningful...!!! As this thread continues, I woke up this morning with this thought in mind as it relates to my eye improvement. There are so many who speculate about the MP and yet for those of us who have treated with it, we have seen improvements that we could not have imagined. I have read so often here on site the same responses, "I've gotten my life back". Seeing something as small as eye improvement, which btw has been gone for 20 years, tells me a lot. I have a lot of common sense and I feed off of that not only with my health but life in general. As I was doing some research on Sarcoidosis online last week, I happened across a site about heart inflammation and a doctor was pretty much slamming the MP and Dr. Marshall being a *bio-chemist*. This makes me laugh out loud. THESE DOCTORS AND RESEARCHERS HAVE COME UP WITH NOTHING BETTER THAN A COMMON "OH SARC WILL GO AWAY ON ITS OWN" AND OFFERED US PREDNISONE TREATMENT OR METHOTREXATE AND YET PEOPLE ARE GETTING WELL ON THE MP. Ahhh, so in steps my common sense. In one  I have drugs (Prednisone, Methotrexate, spray steroids, antimalaria drugs, etc) that are not proving to better my health and are in fact STATISTICALLY bringing on other health challenges and making me worse. In the other I have the research of the MP, the success stories, the hundreds of pages online for the public to read, to research on their own, consume and use to regain their health with the help of their own doctors and commonly known FDA approved medications. Now, which hand would I choose??? My common sense immediately tells me that the MP IS the smart choice. Honestly, I now will be the naysayer, as I could care less about all of these researchers out there who are tooting their horns on support sites and websites about treating and writing about sarcoidosis and yet have given us nothing. NOTHING! They are the same ones who ban us from their support sites, forbid us to mention the MP and yet have given the sarcoidosis community nothing. NOTHING!! In my opinion, rather than being concerned about those of us who are struggling with our health, they are more concerned about their own views and maybe even looking stupid in the end for chasing dead ends, which btw is exactly what they look like to me...  Dr. Marshall knew the deadly future of sarcoidosis as he lived it personally. Which one of these so called brilliant researchers out there can tell you they understand what its like having sarcoidosis or any other chronic illness?Within the past few months I have started seeing more and more awareness of the connection of Vitamin D to these chronic illnesses and especially sarcoidosis. Hmmmm, where do you think these people are getting their information?? From the Marshall Protocol, Dr. Marshall, oh---- the biochemist! In the end, I will hold on to my common sense and realize how far I have come in the past three years of being on the MP. It is commonly written that sarcoidosis will kill within 10-20 years of diagnosis. Thanks to Dr. Marshall I am ahead of the game. I was 34 when I first flared with sarcoid, I will be 54 this year. Tomorrow I am traveling to Memphis to recieve an award from the airline that I work for, something I could not have done without the MP. Why is that? Because I returned to work and made a difference, thanks to the Marshall Protocol! |
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Freddie Ash Member
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HI DEB & ALL This is Fred in WV. This may not be the place for this post but Deb saying she won an award after she went back to work because of the MP. To show you have much the doctors know/don't know about sarcoidosis my family doctor won an award of some kind because of me (he told me this himself) and my knowledge of sarcoidosis. He had a lot of student doctors come to his office and if I was there to see him he sent them in to see me and I would educate them on sarcoidosis. So I won the award but the family doctor got credit for it. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Scarlett Member
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Deb . . . Congratulations on your award, but most of all on your successful return to work. My father became disabled due to a spinal injury in the 1980's and passed away from lung cancer in July of 2004. I would stop and check on him (he lived alone) alot of mornings on my way to work and as I would periodically complain about having to go to work he would remind me of how lucky I was to still be able to go to work. As a much younger and inexperienced person I just didn't comprehend what he was saying . . . I had not truly lived yet. I was young and inexperienced in alot of areas of life, but as we know, much wisdom comes with age. In 2001 I was diagnosed w/Sarc and began to go down hill fast. I now fully understand what he was saying to me. I now count myself among the lucky ones who is able to still go to work and in todays ecomony, to even have a job. I have worked for the same man for 31 years and he knows I am not a slacker. He often tells me I am tougher than him. Yes, I am. Yes, we MP'ers are tough. We must be tough and I thank God for the strength He gives me each day and for the knowledge Dr. Marshall has been given and for unselfishly sharing it with the world. Yes, one day, Dr. Marshall will be recognized for all he has contributed to this world and especially to all pioneers of the MP. I have rambled long enough. Again, congratulations and keep telling the world about the MP, enjoy each day and keep healing. Freddie . . . sorry you didn't get the credit but I am sooo glad your doctor has come around in his thinking on the MP and that you are regaining your health as well. Just think of all the people you have helped through your doctor. Keep up the good work, one person and one doctor at a time. |
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Knochen Moderator
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So I won the award but the family doctor got credit for it. Hi Fred. Your doc may have got a piece of paper and a pat on the back, but the people who *really* got the award are the future patients of those student doctors. Your contribution will echo down to them in ways you'll never see directly, but you can put your head on your pillow tonight knowing that you did a good thing. Kudos from me and everybody else here for being vocal and bringing your doc and his students kicking and screaming into the 21st century. At the very least, you win the coveted "I got my boss promoted" award.And congrats to Deb for her award! Another shining example of what the MP can do. |
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Sallie Q Board Staff
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Yippee, Deb and Fred Deb Grabetz wrote: oh---- the biochemist!didn't Louis Pasteur have the same problem? |
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Freddie Ash Member
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HI ALL This is Fred in WV. I want to thank you all for the response but I was supprised at the response which I was not expecting from my last post. Thank you Scarlett, Knochen, and Sallie Q. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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expate Member
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Just checking in. I am still amazed at how grounded I am now (ie. unexpected improvement), in the face of incredible pressures with work and family. I'm on no meds or vitamins or supplements, except MP, oh yeah, and wine, but really, I am so better equipped to deal with crises. Do know that I continue in psychotherapy that I have been in since 2001. But this is a physical grounding quite apart from the psychological. Plus, I've been able to read fiction for the first time in a long time. Non-fiction allows you to pick it up and set it down as long as you hold on to information. Fiction requires attachment, IMO, and therefore better health. Interesting. Odette Last edited on Fri Apr 23rd, 2010 02:51 by expate |
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Deb Grabetz Moderator
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Odette, What a great report to read this morning! What a connection between our brains and these illnesses we all deal with. No wonder people are so hard to understand at times With all this "unknown" bacteria floating around in our heads!Isn't the reading amazing? I used to blame not being able to read on being too busy, or too tired and sure enough I am starting to be able to do the same, read through a few chapters, a magazine, etc. I used to love to read and now feel I can almost guage around the time I started getting sick many years ago by the fact that I could no longer read! Keep up the great work...and great posts! Hugs, Deb |
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Sallie Q Board Staff
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Yeah, Odette I'm about to go back into Psychotherapy myself for accumulated stress, have done none since my lovely 'shrink' died in tragic circumstances maybe 20 years ago now I have been trekking badly for 3 months Was really stressed early this afternoon talking to my husband A few hours later when he was resting, I was tidying up and listening to the radio when they played my old favorites. I started to sing and fully expected to be croaking the way I have often been in conversation over the last week or so. Now I may have been hallucinating this, and although I am sure my husband woke up while I was doing it, I am not game to check with him …… I was able to sing every single song to which I knew the words (most of them) and I did not croak, have to break off, or as far as I know even go off key . A day to remember And will remember which day. Sadly, today commemorates the first recorded genocide I know of. Historians say it lead directly to Hitler's actions destroying Jewish citizens and people who were ill or handicapped. (must have been many sufferers from Th1 who went up in smoke). Anyway for those who do not know, I refer to, and grieve for the Armenian nation destroyed by the Ottoman regime in Turkey. Easy for me to remember this day, the 24th April, as 25th April commemorates Australians and New Zealanders killed as comrades in arms (European war again) |
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Aunt Diana Member
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Thank you for the interesting history lesson, Sallie. We can learn so much from history as it tends to repeat itself. It worries me that these lessons are so easily forgotten. |
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Dody Moderator
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My latest unexpected improvement: My pierced ears have finally healed! I don't have very "wimpy ears" anymore! I had my ears pierced, at last, at age 49, 16 years ago. For two years they were actively infected and painful. I couldn't take wires out for more than a few hours without the holes trying to close up. Of course a less stubborn person would have given up on pierced ears, but I had waited a long time for this and was not about to let them close up. I did react adversely to every substance ear wires can be made of except for niobium. My ears couldn't tolerate frequent changes of earrings, so I have simply worn the same earrings day in and day out for weeks at a time. I took my earrings out two mornings ago before going on a whale watch, and forgot to put them back in till this afternoon. To my amazement: the holes weren't pink; the wires went in easily (I didn't have the sensation of re-piercing); as I put the wires in I couldn't tell where the hole was from the pain, because there was no pain; and in the "worst" ear, where I used to have to enter the ear and then hunt around through scar tissue for the exit hole, the wire just went straight through. In other words, my "wimpy" ears, and their holes, have finally healed!!! It only took 16 years longer--the 3-1/2 years on the MP being key--than the person who pierced my ears said it would. Thank you MP for another unexpected benefit!! Dody |
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Deb Grabetz Moderator
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I recently realized that a long time symptom has disappeared. Since starting the MP almost three years ago, I have had this clammy, sweaty feeling that would come over me as if fighting an infection. It would vary in degree but today as I was reading something about infection, I realized I had not had this type of IP in a few weeks now! This is why I like to keep a list of IP that I have experienced, it really helps me notice the big improvements, that tend to disappear once healed...outta sight, outta mind, so they say. It's good to be able to see healing, to guage how we're doing! |
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eClaire Member
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This was not unexpected, but I thought I'd share in case someone looks up plantar fasciitis on the MP. Within in months of becoming nearly totally bed bound in November 2003, I had a severe case of plantar fasciitis (which the foot doctor told me was impossible to have as a result of being bed bound), and I would have to wear shoes with molded foot beds in them just to cross the ten feet between my bed and the toilet. After two years on the MP (fall 2008), I was once again able to walk around bare foot on my hardware floors. Last edited on Sun Jul 18th, 2010 19:34 by eClaire |
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expate Member
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Good to hear. Odette |
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Deb Grabetz Moderator
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Those nice little surprises are the best Claire!!!! |
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Deb Grabetz Moderator
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Sitting here playing on my laptop with my knee propped up on a chair...I notice a scar that I've had since falling off my bike into gravel at about age six...The scar runs from the side of my knee down the inside of my leg... This scar has always been thick and lumpy in the area near the knee, so I would say about 4-5 inches (length about 8 inces) and it is now completely flat. I haven't paid much attention to this because the entire scar is barely even visible anymore...makes me feel better about all of this nerve pain and muscle pain I've been having over the last month...surely there is some big healing happening! Another *shout out* for the MP! |
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eClaire Member
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Yeah MP!!!```````` (That was Bonnie leaning on the keyboard to put in her 2 cents for the MP.) |
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