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Jackie from Derby UK
Member in Phase 3
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Posted: Fri Dec 2nd, 2005 19:20 |
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Hi everyone. I started the full protocol on 30 Oct 2005. So far i have been able to keep working. I spaced out the mino to every 3rd day at first, but am now on every other day. I find if I come home and lie down for 30-60 minutes at lunchtime I can manage the whole day and evening too. I work 3 evenings a week, but can take long lunch breaks, which is great.
My worst symptoms are fatigue, somnolence, muscle pain, especially in my back, joint pain, especially in my wrists, and loss of balance. I have soem brain fog, but managing to hang in there at work by the skin of my teeth. My muscles are disappearing, the ones on the backs of my hands have almost gone completely, my hands look as old as my 76-year-old mother's hands. Of course, this makes them weak, too. Does anyone else get this?
I am so glad to know about the MP, and grateful that I have found a GP and consultant who are willing to prescribe it.
Many thanks to everyone who's worked so hard to work out the MP and get it on the net for the rest of us.
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 667 |
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Posted: Fri Dec 2nd, 2005 20:28 |
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Jackie,
Loss of muscle mass is definitely one of the symptoms of TH1 illness. There are a number of people on this board who have had to contend with this issue. Personally I never lost my weight (~10% of my body mass over about a month's time) until I started the MP. Whether the MP was implicated in my weight loss and if so how, I can't say. I do know that maintaining "extra" muscle mass is metabolically costly and that a body under duress needs every resource at its disposal.
Right now, I'm closer to the end then the beginning, and I've already gained back a third of the weight that I lost.
Paul
Last edited on Fri Dec 2nd, 2005 20:28 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Dec 2nd, 2005 20:38 |
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Hi Jackie
Welcome to MP.com and thank you for posting and for filling your signature line..
The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule combined with the Essential aspects of diligently avoiding Light and vitamin D.. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
Do not hesitate to use any of the meds adjustments options in My Herxheimer reaction is too strong. What should I do? .. If you are concerned do not hesitate to contact your Dr..
Your Benicar dosing at 40mg Q8H is only a little above this dosing but you may wish to discuss with your Dr the new info re Benicar from Dr Marshall's most recent paper due for completion in approximately 2 weeks - you and your Dr may be interested in trialing a reduced dose of Benicar (but no less than 20mg every 6 hours) ... If it is better... good, and if it isnt, it is easy to revert to the full dose again.. whatever suits you best.
all best, Barb ......
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Jackie from Derby UK
Member in Phase 3
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Posted: Tue Dec 20th, 2005 16:55 |
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Hi Paul
Thank you so much for replying to my post, I was wondering if I was the only person to experience this. I'm also heartened that you've regained a lot of your weight. Have you also got your muscle tone back? Did you do anything special, or just eat well? I'm now on 50mg of mino in Phase One. My muscles are still disappearing visibly, and my wrists now ache, no doubt due to the extra strain due to lack of msucle. I used to do yoga every day, but now I find I'm often too tired to do it, which is sad, because I do think it did help. But at least I cam still able to work full time, which is a bonus. Any suggestions and similar experiences welcome!
Jackie
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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metalevel
inactive member
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Posted: Wed Dec 21st, 2005 02:49 |
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Hi Jackie,
I saw your post again today and thought I would comment. I too am losing muscle mass and I don't just mean that I am losing weight. I am losing muscle on the left side of my face and shoulder. At this point the causal possibilities of loss on my face are the entrapment of the facial nerve within my cranium or a restriction of the blood supply to the nerve caused by compression of muscles and fascia around the artery as it moves up and into my cranium. Another possibility is TH 1 inflammation of the nerve causing dysfunction. It could be a set of similar circumstances for my shoulder.
Do you have numbness, dullness or pain associated in or near the area of loss, you mentioned pain in your wrists. How about muscle pain just above or below your elbows or in your shoulders/neck. I think you may want to talk to your doctor about this. If it is neurological and it only appeared after starting the MP that could be quite odd.
Perhaps Meg could comment on this.
All the best,
metalevel
Last edited on Wed Dec 21st, 2005 04:04 by metalevel
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Dx. pelvic/spinal-malalignment, head injury, visual dys, cranial nerve dys, seizures? myofascial pain syn, fatigue, brain fog. Jan/05 1,25D=53.9, 25D=28.8. Oct/05 1,25D=26.9, 25D=15.6 No D/light, Noirs.10 mg elavil, Full MP Oct 19/05, 3x40mg Olm, Mod Ph
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Dec 21st, 2005 04:51 |
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To all,
There are many reasons for muscle wasting (muscle loss, atrophy). Th1 inflammation can affect either or both the nerves and muscles resulting in muscle loss.
My experience has been severe atrophy of the muscles in my left foot and minor atrophy of the muscles in my lower left leg. Neurological testing determined damage to the tibial nerve which enervates these muscles. The Marshall Protocol provided the therapeutic probe that evidenced bacterial inflammation of the nerve with an increase in symptoms due to the Herxheimer reactions. As the inflammation has very slowly subsided, the muscle mass has increased and the toes that were immobile now have almost normal movement. My left toes which were 'clawed' with visible muscle wasting below them now have a normal appearance. This was a slow and painful process as the nerves and muscles reawakened. But the waxing and waning of symptoms reassured me that something was happening even before I could notice any improvement.
Best,
Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Jackie from Derby UK
Member in Phase 3
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Posted: Tue Jan 10th, 2006 16:51 |
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I increased the mino to 50mg on 19 December 2005. The herx reactions were quite noticeable, especially asthenia and fatigue, dypsnea, joint and muscle pain, and swollen throat and glands. Also experienced, although more mildly, uncoordinated movement, diarrhea, pruritis (especially on my nose), increased perspiration and photosensitivity. I therefore took the mino every third day for a couple of weeks.
Now, the herxing has decreased, and I can take the mino every other day. This progress is encouraging. When I am stable on 50mg every second day, with few symptoms, I will increase the mino to 75mg a dose.
I am relieved to hear that the muscle atrophy is likely to be reversed. My consultant noticed it before she agreed to prescribe the MP, so it's not a result of the MP itself.
It's good to read other people's experiences, too, most encouraging. Thanks especially to the moderators, who put im such a lot of hours and hard work.
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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dga5000
Guest
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Posted: Thu Jan 12th, 2006 20:02 |
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Hey Jackie - sounds like you have made a good start to the MP. Keep up the good work!
Dan
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CFS dx 1995; FMS 2000; Memory Loss; + Chlamydia Pnemoniae; + LMW Rnase L Protein; Alk Phos 131; MP: 14/01/05: Bolle Swisher w/ 100 lenses + NOIR 707; Betahistine Hrydrochloride 16mg (vertigo); Benicar stopped; Minocycline stopped; Added Quercetin 7/8/5; P
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Jackie from Derby UK
Member in Phase 3
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Posted: Thu Jan 26th, 2006 14:00 |
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Hi everyone
Today I started 75mg mino. I'm still on 40mg Benicar, 3x a day. So far so good, with adjustments I'm managing to work and run my house. I reckon I'm on course to complete Phase 1 in about 6 months, as I started at the beginning of November, and I'm about half way through. I'll be guided by what I can take, though, and how I feel. If it takes a bit longer or less, that's fine.
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Jan 27th, 2006 20:49 |
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Hi Jackie
Thank you for posting. see this post re Grace Success re regaining muscles and use.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Chubby Chicken
inactive member
| Joined: | Thu Dec 8th, 2005 |
| Location: | Vancouver, Canada |
| Posts: | 35 |
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Posted: Fri Jan 27th, 2006 21:30 |
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Jackie,
Just wanted to lend support as a fellow MPer who has also experienced muscles wasting. In fact, my muscle atrophy in my scapular region was what prompted me to pursue medical help in the first place, eventually leading to my positive diagnosis for Borrelia and Rickettsia.
I will be taking my first dose of 100mg mino today and so far virtually all of my "herxing" has taken place at the atrophied sites in the form of sharp pain and tingling sensations. Though there is no apparent mass increase as of yet I do notice a strong decrease in "inflammatory pain" when putting pressure on my shoulder joints (ex: by pushing open a door with resistance).
 CC
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Borrelia, Rickettsia, Suprascapular denervation, Phase-1 Dec 9/05, Phase-2 Feb 23/06, Phase-3 Jun 25/06, Olmesartan 40mg Q8H, M+Z+C, avoiding dietary D, 04/05:Vit-D:60/40ng/mL
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LeAnne
Member in Phase 3
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Posted: Fri Jan 27th, 2006 21:49 |
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Jackie,
I have muscle atrophy in my right hand and arm, and a little atrophy in my left hand. The muscle weakness in my hand and arms, along with severe twitching throughout my body is what prompted doctors to diagnose me. I too have herxheimer reactions in these particular places. I have burning and pain. I have noticed that when the inflammation flares up during the herxheimer, I feel pain, and then I pop my hand or arm and it relieves the pressure I feel. I haven't really noticed any rebuilding of tissue yet, but the fact that I feel the herxheimer and that I have improved strength and motion lets me have a positive outlook on the restoration of these tissues.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Jackie from Derby UK
Member in Phase 3
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Posted: Sun Feb 12th, 2006 17:27 |
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Hi LeAnne
Thank you for your post, it's so encouraging to hear of others with the same symptoms. It's odd how people get the same problem but in different parts of their body. I'm positive about the improvement I can expect on the MP, just got to go through the process. Hope all goes well for you, Jackie
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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Jackie from Derby UK
Member in Phase 3
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Posted: Sun Feb 12th, 2006 17:29 |
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hi chubby chicken
I'm so pleased to read of your progress on the MP. I'm working up to it. I was about to go onto 75mg of mino, but had a setback when I caught a gastroenteritis bug. But I'm back on track now. Hope all continues to go well for you, Jackie
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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Jackie from Derby UK
Member in Phase 3
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Posted: Tue Mar 7th, 2006 11:35 |
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Update...
I am now on 75mg mino, and managing the herxing ok, although the fatigue and asthenia, paresthesia, and muscel weakness are still troubling. But I consider myself fortunate that I have been able to keep working, and so I can pay for people to do cleaning etc for me. Also, I've got a very supportive partner, who helps out loads. I'm taking it slow and steady, keeping the long term aim in view.
It's great to have the support of other MPers, and the staff, who both answer queries and generally make sure I don't feel alone with it.
Jackie
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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Jackie from Derby UK
Member in Phase 3
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Posted: Fri Apr 28th, 2006 19:12 |
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Help...opinion wanted
I am finding that as I progress through the MP, it gets harder. I am now on 75mg mino, but had to start by taking it every 3rd day, and only progress to every other day after a month. I still find I get exhausted easily, and pretty much always feel tired.
I take olmesartan, 40mg 3xpd. Should I increase this to 4x a day? Or maybe decrease my working hours? I am working full-time at he moment. Or should I just continue to take it slowly? I'm a bit confused about how fast/slow I shoudl progress through the MP, or even if it makes a difference or not.
I'd welcome feedback from the moderators, please.
Many thanks - especially as my GP and consultant seem to know less about the MP than I do, and ask my opinion on how it's going. I appreciate their openness, as without that, they wouldn't be willing to authorise and prescribe the MP. But, as I'm sure many others are, this does make me very reliant on this forum, and the moderators, and extremely grateful for all the time and expertise involved.
All the best, Jackie
____________________
Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Apr 28th, 2006 19:28 |
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Thanks Jackie
Some do find the higher levels of mino more difficult. we recommend adding a 2nd abx at this time.. Your signature line says you have been on the MP since Nov 05, so it is time for you to be preparing for phase 2. you dont need to have achieved the 100mg mino level..
see this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information to discuss with your Dr.
re Benicar: How does Benicar work? Why is it superior to other ARBs? Should I take it every six or eight hours?
Rest is indeed a very important part of managing and healing.. It is important for All to make sure of having adequate rest.
By being pushed to the limit of tolerable herxing our body is working to capacity.
see also I'm eager to get well. How can I speed up my progress on the MP? slow and steady wins the race.
We are happy to assist you in any way we can. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Jackie from Derby UK
Member in Phase 3
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Posted: Fri May 19th, 2006 12:58 |
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Hello again
Another opinion wanted, please. I am on Phase 1, on 75mg of mino. I've been advised by Meg that I am ready to go onto Phase 2. I can't see my consultant and therefore can't get the Phase 2 meds until 8 June. Should I go up to 100 mg of mino now? or is it best to stay at the 75mg level? I feel I could cope with going up to 100mg.
All the best
Jackie
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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barbski
Member in Phase 2
| Joined: | Tue Jul 20th, 2004 |
| Location: | United Kingdom |
| Posts: | 479 |
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Posted: Fri May 19th, 2006 16:20 |
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Hi Jackie,
I don't know what the board staff will tell you regarding this, but I just wanted to remind you that if you do move up to 100mg mino and then find it too tough, you can always drop back to 75mg. I had to do that a couple of times, but I got there in the end.
Best wishes,
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05) NoIRs limited outings covered
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri May 19th, 2006 18:20 |
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| Thanks Barb... Jackie, Barb is correct. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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