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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 16 |
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Posted: Mon Jun 9th, 2008 20:58 |
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I have been a member of the MP site since 11/07. It took me 6 months to get everything lined up and ready. DR., Noirs, Home Lux, Scripts and work support.
I missed the open MP study site by a couple of days. I studied and studied the protocol almost daily for hours and months. By the time everything came together I felt confident in my knowledge of the protocol. I watch several topics. One of the most helpful was the "urgent posts". This showed me over and over again how to manage the MP meds and what was truly intolerable. I also learned who my favorite moderators are, not to mention how to post properly. I'm sure I will make some mistakes however due to the unavoidable Brain Fog! Spelling has surprised me. Sometimes I just can't. Easy to accept for now. I was homeschooling my 3rd grader through this all, so you can imagine. We both did great and now it is our summer break. Anyway I bored you all to say this.....
In October 07 I had no hope and did not even want to live. I was told that it was all part of aging and all I could hope for was a good pain Med to take for the rest of my life, and to increase my Vit. D and omega 3 intake. and get more sun.........
Desperatly needing to feel better I DID!
Never having had to be on any meds other than an occassional ABX this was unacceptable. I found or was led to the MP site and everything changed that day.  
Now in PH1 and feeling better than I have in over a year (even with the IP's) I love every Herx I feel. Luckily I am relatively early in my TH1 disease and look forward to a complete recovery.
To say how greatful I am seems insufficient and seriously understated. So does saying "THANK YOU" Dr. Trever and all you awesome moderators.
Anyway thats my short story as I continue on my MP journey to complete recovery. 
Love and health to all,
KARON
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RA PTSD 125D73 25D20 Ph1Apr08 Naproxen Tramadol Valium-stoolsoftnr-Lowlux Home & Work NoIRS cover up
25D14.4(Jul08)Ph2-Aug08
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MarkN
Member in Phase 3
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Posted: Tue Jun 10th, 2008 16:47 |
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| I love my herxes too! Well .... there was one herx that I could have lived without. But it is gone now.
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ADD, general insanity (or ????), unofficial CFS, minor joint paint ...
11/06:1,25D=37 25D=43, 3/08:25D<7 ... Avoid D 12/06 ... PhaseOne 1/07, PhaseTwo 3/07, PhaseThree 9/07
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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 16 |
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Posted: Wed Jun 11th, 2008 19:33 |
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Hi Mark,
You have been a MPer for a while now huh? How has life changed for you? What are your main Herx's now? What is it like to live in NC? How is your family responding to the MP? So many questions sorry. Nice to here from you!
Happy Healing!
Karon
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RA PTSD 125D73 25D20 Ph1Apr08 Naproxen Tramadol Valium-stoolsoftnr-Lowlux Home & Work NoIRS cover up
25D14.4(Jul08)Ph2-Aug08
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MarkN
Member in Phase 3
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Posted: Thu Jun 12th, 2008 23:59 |
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| Yeah it's been 18 months now. I am at the stage now where it seems like "this is taking forever". But I do appreciate the magnitude of the problem, so I can appreciate the magnitude of the solution. The only herxes I have right now is tiredness and brain fog. With these herxes, a strong herx is actually more fun than dragging along trying to be halfway energetic and intelligent.
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ADD, general insanity (or ????), unofficial CFS, minor joint paint ...
11/06:1,25D=37 25D=43, 3/08:25D<7 ... Avoid D 12/06 ... PhaseOne 1/07, PhaseTwo 3/07, PhaseThree 9/07
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Dr Trevor Marshall
Research Team
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Posted: Fri Jun 13th, 2008 01:34 |
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Mark,
When folk are not getting much immunopathology it is usually because their 25-D levels are too high. I notice that yours was very high in 2006. Have you had it checked recently?
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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 16 |
| Status: |
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Posted: Fri Jun 13th, 2008 02:56 |
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Hello Mark,
Wow! I was tired and fogged for so long before ,about 1 year (seems so disrespectful to long time sufferes) that this seems easy for me to look forward to. Have you been able to help anyone in your family find the truth and healing in the MP?
What was your worst herx and in what phase. What phase did you find the easiest? You will not scare me only inform me. "Urgent posts" is one of my favorite watched topics. I learn more there than anyother topics. I love them all but thats my favorite!
Day trading has to be one of the best jobs to have while on this journey huh? I thought mine was perfect. I work in a very dark (no windows) bar. I only have to travel 20 min 3 x a week. I am blessed!!!! I have been able to plan my herx days.
This herx brings fear of the MP being taken away from us because it works to well.
Crazy huh?
Still happily herxing and healing one day at a time.........
Karon
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RA PTSD 125D73 25D20 Ph1Apr08 Naproxen Tramadol Valium-stoolsoftnr-Lowlux Home & Work NoIRS cover up
25D14.4(Jul08)Ph2-Aug08
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MarkN
Member in Phase 3
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Posted: Fri Jun 13th, 2008 18:22 |
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Trevor: With avoiding D my levels came down pretty fast. Here are my 25-D results:
November 2006: 37
February 2007: 12.8
August 2007: Undetectable < 7
March 2008: Undetectable < 7
Karon,
It is good too work inside .... and good to collect some indoor activities, like movies and games. My brain is too slow for video games, but I still have a lot of fun with Mario Kart Wii. It is important to keep an upbeat attitude, like you show in your posts. My mom and dad are on the MP also .... we all have bugs. My hardest phase was Phase II, and the worst herx was flaming butt herx, which lasted for nine months.
Last edited on Fri Jun 13th, 2008 18:27 by MarkN
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ADD, general insanity (or ????), unofficial CFS, minor joint paint ...
11/06:1,25D=37 25D=43, 3/08:25D<7 ... Avoid D 12/06 ... PhaseOne 1/07, PhaseTwo 3/07, PhaseThree 9/07
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Chris
Advocate
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Posted: Sun Jun 15th, 2008 12:00 |
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the worst herx was flaming butt herx,
Oh, I recognize that one, spent the day with it yesterday .... can I borrow the term?
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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cwylie1
Member in Phase 2
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Posted: Mon Jun 23rd, 2008 01:40 |
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MMMMmmmm boy! Can't wait til the herxing starts!!! Just kidding.
Actually, it's been pretty light. Dizziness, off balance feeling wk.1; Upper respiratory sxs, some fatigue and a few odd sxs here and there such as tinitus (which I did use to blame on drinking too much coffee  ).
The past two days, on very little sleep, I have awakened early and feeling refreshed!! Quite a surprise but I'll take it and enjoy it while it's here!
Week three, here I come!!! Doing 25 mino this week. Will be staying on my ADD med. as I have nothing to indicate the need to not take it.  It will most likely help reduce the fatigue...perhaps. I worry that my 25D levels are too high to produce the desired immunopathology. Lab retesting not until 9/1. I think I'll contact my dr. to request just the 25D be redone the first week of July. That would be 2 mo. since the first draw and 3- 4 mo. since cutting out external D.
Anyhow, hope you all have a great week and may all your herxes be tolerable!!
Carol
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 23rd, 2008 01:48 |
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ADD medicine often modulates the immune system. How else would it help ADD (which is Th1 in origin)? See the paper earlier this week on Prozac, apparently an immunosuppressant:
http://tinyurl.com/6y4fd5
Now this is nothing to panic about, as the effects are weaker than either Vitamin D or Benicar. But it is the reason we try to explain to people that it is better to wean off all meds. Truth is, FDA has not a clue how most meds actually work... Otherwise they would anticipate the side effects in advance, rather than having to observe them while the drug is being marketed 
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cwylie1
Member in Phase 2
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Posted: Mon Jun 23rd, 2008 01:58 |
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Thanks Dr. Marshall.
It makes sense to me re: the beginning of week 2 I felt like I had WAY too much stimulant in my brain. So I stopped the Vyvanse until Fri. then took it Fri. and Sat. I will stop and see how it goes. I have been on the smallest dose available, having only taken this the past mo. and a half.
I will stop it and trust the MP process. Would appreciate prayers that I can get my paperwork done at work. I work in rehab. and we have LOTS of paperwork, so I have LOTS of stacks of papers.
Ok then, onward and outward!!!!
Thank you for your response. Much appreciated.
Carol
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Adrianne
Member in Phase 3
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Posted: Mon Jun 23rd, 2008 16:37 |
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Has anyone experienced a feeling of vibration throughout the whole body? I can feel it during the day but it is most noticeable when I am lying down and trying to go to sleep. I can feel it in my head, abdominal area, arms and legs. This has been very noticeable for me the last couple of weeks, especially. I remember also feeling it to a lesser degree very early on in the MP.
I'm thinking that this may be my immune system waking up. Although, I am not sure that you can actually feel your immune system working or just the effects it produces. Perhaps it is IP of the nervous system.
Any feedback most welcome!
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 23rd, 2008 16:47 |
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Adrianne,
This effect would be neurological in origin, rather than immune-system-function related. Many folk get "the shivers" and maybe this is similar (but slightly different)?
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Adrianne
Member in Phase 3
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Posted: Mon Jun 23rd, 2008 17:12 |
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| Thank you Dr. Marshall! No, it is not like the shivers in that it is ongoing. I am just buzzed all over. It is good to know that my nervous system is being de-bugged. Who knows, maybe I'll eventually come out of this being that steady, calm, un-emotional person I've always wanted to be!
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
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Posted: Thu Jun 26th, 2008 09:14 |
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I am just so envious of folk who feel better after going on the MP. Up until taking a break (after 15 months) and then starting on Deme instead of Mino, the MP has been hell on wheels for me. My favorite term that I came up with to describe one of my intense heart herxes early on was "Death eater" herx (from the Harry Potter series) and I went through a three week period where I could tolerate only a 25watt bulb positioned behind me with 2% NoIRs for about 30 minutes out of the day--the rest had to be total black out with a mask over my eyes even though I had blackout material on the windows (this was to black out the miniscule light coming under the doors); I had to take a shower in a darkened bathroom, the door only open an inch with a 25watt lamp 12 feet away. I was told to call that period "severe light sensitivity." Ha!
Of course, I just took a break and noticed a lot of improvement and Deme for me, as compared to Mino, is like spring break.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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JanEE
Member in Phase 3
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Posted: Thu Jun 26th, 2008 20:29 |
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Hi Karon,
Don't ever feel that your story is boring. It isn't. Most of us have been there ourselves. I think for a lot of us, it's the first place we've felt safe enough to discuss our pain, frustration, and feelings about our illness without people telling us "you sure don't look sick". I have to admire all the people who continue to work, and some like you who homeschool their children, while going through the protocol.
Adrianne, I have felt trembling throughout my body, but I'm not sure if it's the same thing you're describing. It usually accompanies extreme weakness.
Claire, I was extremely light sensitive also. Your description fit me to a T. I have those round, frosted light bulbs in my bathroom and unscrewed them all, except one. Even that one glared so I taped a piece of black paper over the front of it so the light didn't glare in my eyes. I even covered my lampshades with black paper. Like you, the slightest sliver of light coming through the edge of the covered windows felt like an attack. I tried to keep my garden alive by watering just as it was getting dark. A couple times I got so dizzy I fell over and squashed a couple plants. Boy, did I feel silly. The day when the sensitivity began to lift was a day for celebration. I'll never forget finally being able to take one of the layers of black plastic off the windows and see a dim hint of nature out there.
One thing about light bulbs. I think they are purposely making them so they don't last as long as they used to---trying to force us into buying the energy saving ones. Some of my light bulbs have lasted for years. But since beginning the MP I have gone through so many boxes of 15 and 25 watt light bulbs, and even the brighter ones I've now graduated to, that it's beyond belief. And while it's easy to change the ones inside, it's not so convenient to change the ones on my porch or garage, which require a ladder and light to see what I'm doing. The first year I didn't even bother to turn those lights on.
I seem to feel better at the end of each phase and think the worst is over, and then it all begins again. There was one week of time during phase 2 that I had one fabulous week though. I felt wonderful and thought it would only get better from then on. I got tons of stuff done in the house. I had not one iota of pain anywhere and enough energy to run up and down the stairs. The strangest and most wonderful thing was that time seemed to expand. It felt like there were a few more hours in each day. I hang onto that memory every time I get discouraged, and hope that one day I may feel like that all the time---or as Dr. Marshall says---"even better than we can imagine, it just keeps getting better and better". Right now, I'm just coming through a rough patch that's been going on for about a month and a half. I've thougtht of taking a break like you did, Claire, but don't want to lose the time. I already lost 9 months of time when doc had me take several breaks during phase1 due to kidney concerns. I'm glad you enjoyed your spring break.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
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Posted: Fri Jun 27th, 2008 00:27 |
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Hey Jan,
You scare me! No really, I know there are still rough times ahead, but I am so enjoying getting used to Deme and knowing it is a tool I can use in my toolbox to slow down the IPR to tolerable levels. My complete MP break was necessitated by kidney labs that exceeded what is recommened on the MP (and shoulder pain that had become intolerable--I could hardly move my body at all without severe pain--with no end in site) and the fact that my partner left me (due to my disability) and I needed to feel well enough to try to begin getting my life back in order. I understand the desire to stay the course!!!
While I don't love my IPR as others seem to do, I recognize that this is something that must be survived if I am to survive and eventually thrive again.
Best wishes to all, Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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JanEE
Member in Phase 3
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Posted: Fri Jun 27th, 2008 01:44 |
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Hi Claire,
Sorry. I didn't mean to scare anyone. I didn't think my post sounded that bad. My kidney concerns (lots of MPers have them) were finally put to rest when my doctor sent me to a trusted (I think she hand-picks certain people who she trusts) kidney specialist. After starting with the simplest test first, he only did a couple before declaring me fit to begin the protocol again, and I haven't stopped since. As my doctor told me, she just likes to play it safe with her patients. She also switched me from mino to deme.
It sounds like you've been through more pain than I have. It doesn't mean you're headed for a worse time in phase 3. Every single person, and her/his journey, is different so don't look at me as an example of what will happen with you. Heck, my doctor's office manager told me phase 3 was a piece of cake and she seemed sailing through it. I thought it would be for me too, but it's different.
I'm not sure that my recent rough patch was as bad as a lot that I've read about, but it was beginning to wear me down. I finally got smart and followed that advice of so many, to increase my Benicar to every four hours during the day. I still go eight hours at night. It seems to have helped as I have had three days in a row of feeling pretty good with only minor herxing. Today I'm herxing a little more again, but at least I've had some respite.
I'm so sorry about your partner leaving and all the stress it has caused you. I know it can't be easy doing the protocol and going through that too. I think the people with supportive partners are very, very lucky people. But I've read enough determination between your lines to believe you are going to thrive again.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Adrianne
Member in Phase 3
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Posted: Sat Jun 28th, 2008 03:43 |
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Hi Jan,
No, the vibrations that I was feeling made me very hyper, not weak. I had so much nervous energy, I felt like I had to keep going and couldn't relax. I tried to work some of it off with exercise but it only helped a little. Anyway, I just started to supplement with calcium and magnesium and it is helping quite a bit to quiet down my nervous system.
Thanks so much for sharing about your experience!
Adrianne
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 16 |
| Status: |
Offline
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Posted: Sat Jun 28th, 2008 04:37 |
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Hi Jan,
Its not at all like that! I have sent my 9 yr old to dads for the summer so I can IP in private so that I don't create a memory of "mommy was sick that summer". I'm lucky to have dad 1 block away so I can visit on feel good days without the mama guilt. The thought of homeschooling next year frightens me. I am often overwhelmed with guilt. I think its built in to all us moms. The MP as I'm sure you know intensifies the emotional aspect.
Hello Jan..... Its nice to meet you !
Karon
Last edited on Sat Jun 28th, 2008 05:17 by Karon
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RA PTSD 125D73 25D20 Ph1Apr08 Naproxen Tramadol Valium-stoolsoftnr-Lowlux Home & Work NoIRS cover up
25D14.4(Jul08)Ph2-Aug08
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