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Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 384 |
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Posted: Sat Jan 24th, 2009 20:55 |
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written as a reply to new member questions:
I've been on MP about 3.5 years and have Sarc (multiple biopsies confirmed). As with most ph 2/3 patients who are recovering greatly, we tend to not log on and read the MP sites (curemyth1 or the regular site) near as much as when we weren't feeling well. This is my first time logged in on the curemy site in about 3 months.
Anyway, a couple thoughts for you:
1) Dr. Marshall is very clear that Vit D (ingested and sun) has to be reduced greatly in order to get one's immune system activated. The Benicar assists greatly in that (reduces 1,25D and allows VDR to work more correctly) as well as it is a must to prevent damage to internal organs while the immune system fights the bacteria.
2) Don't think of this protocol like other treatments (I think that is the most daunting aspect). You're not going to start the protocol and feel wonderfully better overnight. If you tried to go too fast (I did early on), you're going to get to a situation where the IPR/Herx is "runaway" and nothing seems to help. The KEY is to go slow and for me, slow enough that I could continue living my life with some constraints. In otherwords, "normal" living changes for a while (to include NOIRs, much less exposure to light and avoid vit D ingested foods, and less exercise).
3) I certainly feel "cured" as defined by my original assumptions (e.g. no longer avoid light, only where sunglasses outside, mostly avoid vit d foods still, exercise as much as I want and don't avoid any activity, vacations, etc.). However, I'm still going through the abx combos and will for another couple years I think. They aren't preventing me from anything at this point as the IPR is very small and no one would even know I'm on the protocol if I didn't tell them. My vit D level has risen some (14 darn it...because I'm exposed to so much light and don't totally avoid vit d foods) and 1,25 is in normal range. I know even after I decide to quit taking MP meds, I'll avoid Vit D somewhat for the rest of my life (as it is soooo easy to see how much the supplementation in US is affecting our health in general).
4) You should be able to work, still do "most" of the things you want to do (especially is you're fairly healthy otherwise) and you can then decide what your next step is. I suspect, if you're like me, that you will be much more light sensitive after starting benicar (benicar quickly adjusts the 1,25D and photosensitivity for me resulted in nasty nasty headaches when exposed to flourescents or sunlight......which was something I thought would prove not to be the case). You'll find any Sarc SXs you've had in the past will show up again (not all at once, they'll wax and wane ....unless you try and go too fast in which case they'll wax on and on and..you get the picture). Also, you'll get some SXs you haven't had (but would have had in the future as you kill bugs in places that hadn't affected you yet. For me, I got a lot of itchiness (allergic type of reaction) in places, some electrical shocks, and of course my mind seemed to have gone totally.
5) one nice thing you'll find is that you'll recover in ways you didn't know you were sick. For me, pre-mp, my memory was getting worse and worse (I put it down to Age but I'm only 53 now) and at times I'd forget what I was talking about while I was talking about it......really made one feel stupid. But by the 1 year mark, my mind felt as sharp (except for occasion IPRs and I don't have any of this type anymore) as it had when I was 22 graduating summa cum laude in college....its a nice feeling.
Hope this helps. You should get some IPR in ph 1 and base your continued decisions on that.
Happy MPing,
Robert
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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Sun Jan 25th, 2009 01:37 |
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Hi Robert. 
Thanks so much for your retrospective insights from the 3.5 year mark. I find your words of wisdom very helpful to me as my 25D is getting low enough to really feel the IP/herx in a whole new way. 
I hope you write a note in your calendar to post again in half a year or so. 
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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