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Deb Grabetz
Advocate
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Posted: Fri Aug 22nd, 2008 11:29 |
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Please share your MP anniversary stories here! How encouraging for us all to *hear* and share in these life-changing stories!
  
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Deb Grabetz
Advocate
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Posted: Fri Aug 22nd, 2008 12:14 |
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OK...I'll start...
My one year anniversary has just passed...
 July 30, 2007 Here is my very first post when starting Benicar on that day...
7/30/07
"It is so incredibly exciting to be at this point with the MP...I feel better today than I have felt since being diagnosed in February (07)...well, that is the goal! I imagine myself still struggling on Prednisone had I not found MP...with nowhere to go...unlike moving forward the way I have been doing over the last three months...I'll not deceive anyone by saying it's been easy...I've had a couple days I thought I could just not take the pain, fatigue and weakness another minute...but with the help of Lottie and all of you...I have made it here...thank you for your understanding...for your support...for the belief that I would get here someday...off the steroids!"
There was no way to know what lay ahead for me personally in that first year. Only all the research I had done reading through other posts on site. Was it tough...you betcha! Did I have days that I thought I was not going to get through it? You betcha! I started the MP at the sickest point I've been in over 20 years with sarc, so it was no picnic...and yet today as I'm now starting into my second year, I am seeing so much of my life returning. Getting through that first year is one huge milestone with a lot of personal goals, hard work and determination!
Never, did I expect to feel well, I was that sick! (Now, this doesn't mean I didn't have faith in the MP, it is the only thing I did have faith in, back then!) I'm here to say that not only am I getting well, but I am now at a point that I have these occasional days that I feel the "young Deb" I experienced during my better times. A TIP TO WELLNESS: *LISTEN* TO MODERATOR ADVICE WITH A PASSION, IT'S KEY IN GETTING WELL!
My symptoms in the beginning of the MP were a page long, sometimes over 20 different challenging IP responses...today I vary between 3-4 strong IPR...and they are ever changing which tells me that healing is happening everywhere in my ill body. Last week I had a facial cheek muscle twitching for two solid days...after awhile it actually becomes an event to see what might be healing next...
My strongest challenge is still fighting fatigue and getting my "zip" back. But today I'm confident that this too will return...
Happy Anniversary to Me!!!! "NEVER GIVE UP"
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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HeatherK
Member in Phase 2
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Posted: Wed Sep 24th, 2008 13:44 |
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ONE YEAR ON THE MP!!! I MADE IT! Sept 20th
I'd like to report my progress, after evaluating where I have come too in the past year. It was a tough year, many rough days, but in many ways seemed to go fast ( I slept a lot ) yet some of those rough days were long! By the grace of God, I got through the year and it was well worth it.
I can now climb stairs several times a day. Before the MP, I only ascended once, to go to bed at night, never standing up, but with hands on the steps ahead of me, bending over, because orthostatic intolerance/fatigue was soo bad. I have now occasionally surprised myself because I just found myself ...amazingly RUNNING... up the stairs like I used to 8 years ago ( but not on herxing days)
Energy levels all around are much better, gotta a ways to go yet to sustain energy in any activity, but my walks at night are good, 5 telephone poles lengths here in the country. I haven't tried further lengths lately but am walking this briskly now most days.
A plus I did not expect , and didn't notice untill this summer, that my hair has thickened considerably and have some gray reversal going on.!!! Love it!
Sleep has improved greatly, restless legs only bother me occasionally now, usually indicating a need to increase Mino. I have now graduated from my couch to a recliner chair , sitting up much more. I do not clean my house yet, and getting the supper meal cooked and on the table is the biggest feat of the day still.
I am still very much in the darkened house, rarely going out in daylight as light sensitivity is the biggest thing I deal with now. I am getting out to shop after dark occasionally now as the days lengthen.
Realistically I have a long ways to go yet, but I now see it for myself and feel that I am stronger, and Friends tell me I LOOK and SOUND better.
The light in the tunnel has gotten much closer.!
A Mighty ThankYou to Dr. Marshall and his devoted team for this opportunity for renewed health.
Gratefully , Heather
( in Phase Two.)
Last edited on Wed Sep 24th, 2008 14:16 by HeatherK
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CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Mar/08(25D= 8.8); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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janicew
Member in Phase 3
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Posted: Fri Oct 3rd, 2008 00:23 |
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Hi all,
I was asked if I would add here the recent post I made on the main MP board Phase One Alumni Forum. So here it is for those who may have missed it:
I am observing my 4th year anniversary on the Marshall Protocol today so I decided to post my progress for those who don’t have access to Phase 2 and 3 threads.
I was incapacitated with chronic disease many years ago, FM, CFS, thyroid disease, and osteoarthritis being the most prevalent. Besides the usual “standard of care” treatments from doctors, I have also tried many supplements and other remedies over the years.
I took flax and fish oil supplements per the recommendation of the digestive disease doctor who was treating me. I took Calcium with D and Magnesium per the guidance of another well-meaning doctor. I tried the guaifenesin and doxycycline protocols for FM without any noticeable effect.
I watched the Internet for years for reports of something, anything, that would offer true hope for a real cure. I had come to accept the fact that there wasn’t one. I would read about other people who thought they had found some supplement combination, or drug, or treatment, or something and watched and waited, only to see that in time they didn’t work either.
Just prior to beginning the MP I was taking the following 16 prescription drugs plus additional supplements:
2400 mg Neurontin daily for pain
400 mg Ultram (Tramadol) daily for pain
75 mg Effexor twice daily for fibromyalgia (pain and sleep)
50 mg? Wellbutrin daily for depression
.1 mg/.125 mg (alternating) Levoxyl for Hashimoto’s thyroiditis
Beconase nasal spray, 2 sprays ea nostril twice daily for allergies
Allegra 180 mg daily for allergies
2 mg Estrace daily for HRT
Estring for pelvic pain associated with IC
10 mg Ambien nightly for sleep
Zomig 5 mg 3-4 times per month/as needed for migraines
100 mg. Topomax twice daily for migraines (preventative)
Reglan 5 mg (for migraine “cocktail”)
Nexium 40 mg daily for reflux
Ranitidine 150 mg prn for reflux
Vioxx 25 mg for arthritis
Calcium/Magnesium w/Vitamin D added (1000 mg, 600 mg, 400 iu respectively)
Flax & fish oil
Numerous extra vitamins, herbs, and supplements
Despite all my efforts things were going downhill at an increasing rate and there wasn’t anything else left to try. I lived with overriding pain, fatigue, very poor sleep, a headache that never went away, and frequent migraines.
I often suffered constipation or IBS. I experienced hormonal problems from a young age and had an ovary and uterus removed at the age of 37. (I didn’t begin HRT until about ten years later.)
I had cystic, painful breasts with calcifications and for a time had to have mammograms every 6 months to keep a watchful eye on things. (After 3 ½ years on the MP, my latest mammogram was NORMAL.)
I had osteoarthritis with deformed knuckles in my fingers and painful wrists, knees, ankles, right hip and great toes. I had carpel tunnel in both wrists and I had surgery on my right wrist because it became so unbearable. (Since the MP I no longer have carpal tunnel in my left wrist.)
My legs, lower back, and right hip were so painful that I could not walk very far or stand for very long at a time. Some days I needed a cane to assist me for walking. (Now I’m able to go for nice long walks after dark with my husband without slowing him down.)
For well over a decade I received a friendly annual warning letter from my doctor about my high cholesterol, which peaked at 311 while on the MP and is now in the normal range thanks to the MP.
Four years before the MP (in 2000) I had surgery for a large hiatel hernia and Barrett’s esophagus. The hernia and Barrett’s was discovered just after my bout with Guillian-Barré (1999), which paralyzed me and put me in ICU for 20 days, requiring 13 rounds of plasmapherisis (plasma exchange). While in the hospital for my hiatal hernia surgery, I fell and received a head injury that severed the olfactory nerve, leaving me with a permanent loss of smell and taste and injured both inner ears, leaving me with severe vertigo. I was treated for the vertigo and it is greatly improved.
I then developed severe pelvic and lower back pain and was diagnosed with interstitial cystitis. Despite being on maximum pain medication for fibromyalgia, arthritis, and headaches, the IC pain was unbearable. (I no longer have the pelvic pain. This was the first symptom to resolve early in the MP.)
My daughter and I learned about the Marshall Protocol in the summer of 2004. My daughter began first because she was the most disabled, but once we saw how long the process was going to take, and how fast I was deteriorating, I decided to begin the MP also. On October 1, 2004 I took my first Benicar.
In 2006 I slowly weaned off of Neurontin, then Wellbutrin and Effexor. In 2007 I began weaning off Ultram, switching to a half tab hydrocodone every 6 hrs for pain relief. I then weaned off the Topomax. I have lowered my thyroid med, estradiol, and Ambien doses several times over the years on the MP. I stopped the allergy meds early on, along with the Nexium, and other meds.
I am now taking:
Benicar and current 3 abx dose
½ tab 25 mcg Levoxyl daily
½ tab .5 mg estradiol daily
½ tab 5/325 mg hydrocodone every 6 hours for pain
¼ tab 10 mg. Ambien
1000 mg Calcium daily
My joints are not painful anymore. I have a few finger knuckles that are still deformed, but I don’t have any pain when they are touched anymore and they don’t ache terribly.
I sleep well most of the time. Occasionally I will be wakeful, but that is due to the explainable circumstances of IP (immunopathology response a.k.a. ‘herx’), or light exposure. However, I do still use the fraction of Ambien nightly.
I don’t have a headache all the time anymore and I haven’t had a migraine in a very long time. I do still get headaches now and then, either from IP response or light exposure, but they are manageable with Tylenol and I don’t need the big gun cocktail of medications which I used to take 2-3 times per month prior to the MP.
Since starting the MP I developed adhesive capsulitis (frozen shoulder) in both shoulders. This was probably IP. I went to physical therapy for this and it improved over time. Adjusting the MP meds was helpful in controlling the discomfort.
When I began the 2nd abx I began having intolerable IP responses in my gall bladder and it was discovered that it was full of hundreds of gallstones. I took a pause from the abx and had my gall bladder removed (October ’05).
One of my greatest challenges on the MP has been the extremely slow decent of my 25D levels. Even with concentrated adherence to the dietary guidelines it took me 3 ½ years to get my 25D into the “therapeutic range.”
I have had to progress very slowly in ramping the abx. In fact, I have only this year been able to take the three of them on the regular 48 hour/10 day schedule without intolerable IP, and I am still on very low doses.
While weaning off of Ultram (which was very difficult for me) I got into an intolerable situation after a fall down the stairs. In Feb. ’07 I took a one month break from the MP abx but I found I felt better once I got back on the minocylcine and Benicar schedule. I’ve been more careful to keep things tolerable since and have progressed slowly.
I am currently in a phase of light sensitivity. (I was having strong neurological reactions including depression, sleeplessness, confusion, anger, and crying easily.) I have had to stay home from my weekly attendance at church on Sundays for the last 4 months, a big sacrifice, in order to “stop the madness.”
Overall, I am doing better than I was before starting the Marshall Protocol (and without all the drugs I was taking before!) My body is on the road to recovery and not on a steady decline with increasing dysfunction. Although it’s taken me longer to get to where I am now than I’d originally hoped, I am quite pleased with the results so far. Not everyone has as much trouble lowering their 25D as me and we all have different levels of disease involvement. Everyone’s MP experience will be different.
The MP is not something everyone can do. It is hard. You can’t just dabble with it, or think it will make you completely well in 3 months. Or even in one year. For some of us it takes years of being diligent to see improvements. Some improvements seem small or maybe not the ones we would have chosen to see first and fastest. Patience is required. And you MUST follow the MP guidelines and the directions of the moderators. They have the advantage of experience, knowledge, and perspective. You cannot do the MP “your way” or deviate from the guidelines and be successful.
One of the greatest gifts the MP has given me is hope. I have hope for a brighter future. Though it’s slow going, I am seeing improvements. What palliative drugs, supplements, and other treatments have never been able to do for me, the MP is doing!
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FM/ME, OA. Hashimotos 9/04 1-25D=47| Ph1 10/04; Ph2 5/05; Ph3 6/27/06 |11/08:25D=11 |2% NoIRs/10% ZO cream| low lux home, cover up. Hydrocodone, Ambien (Zolpidem), Levoxyl, Estradiol, Calcium
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Freddie Ash
Member in Phase 3
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Posted: Fri Oct 3rd, 2008 13:10 |
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HI JANICE
This is Fred in WV. Thanks for that great MP story. In the story you said, "THE MP IS NOT SOMETHING EVERYONE CAN DO. IT IS HARD." I always tell the people that I am talking to about the MP the same thing, that it is not easy, but add neither is the TH1 diseases. They will kill you. So I tell them do the MP is my best option, because I want to live a few more years. Like Dr Marshall once said we may live to be 120 or even 140 and still be able to do things like I can now. Thanks again for that story.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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