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Knochen
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| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 349 |
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Posted: Sat Dec 16th, 2006 16:53 |
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I've never posted in this area before, but I hope those of you who are curious about the folks in later phases of the MP get some benefit reading all the stuff here.
For myself, the MP has been quite good. Phase 1 had some stops and starts, with minor adjustments to the mino dosages, and a few weeks of marginally tolerable IPR (Herx) and insomnia. In my case, it was at 50mg mino that I had the hardest time. I stayed there for a while and then decided to see if increasing would help. It did! From then on, clear sailing. Phase 2 has been better, but it may be due to my making a boneheaded mistake in measuring my doses - I was taking a lot less than I thought for quite a while!! Argh. But upon gettting up to the "correct" dosages, there hasn't been much response, so I suspect that I was killing bugs all along anyway.
I have been one of the brave souls trying out zinc oxide plus K Cream for sun protection. I do cover up as much as I can without looking odd, I wear a lightproof jacket, gloves and a baseball cap, and NOIRs, of course. But my face and neck are exposed about 2 hours a day during my commute and I work in an office with a lot of windows, so I get some exposure all the time. I'm happy to report that as of Dec 2006, my D25 level is at 8. It had jumped from 9.2 to about 14 back in September, and I was worried that a month of zinc oxide usage, as opposed to really covering myself had caused the spike, but it seems not. I make my own transparent zinc oxide cream and it has been working well for me.
Getting ready to begin phase 3 sometime soon and expect to hav more of the same reactions. It's certainly a long haul, but it was a long haul getting sick too, and I'd rather be moving forward than backward.
To anyone considering the MP, I say go for it. I've been able to continue working throughout and have missed far fewer days than I would have before the MP. My brain is less foggy, my body hurts far less, and I haven't had any migraines since I started (2-3 days a week before that, some very bad ones too!)It's been WELL worth the trouble and discomfort involved and it will keep paying dividends the rest of my soon-to-be-healthy life.
March 2007:
My migraines had been declared a refractory case by a major headache clinic in the Boston area years ago, and my neurologist also threw up his hands and just tried to relieve the attacks rather than prevent them. I have been nearly 9 MONTHS without a migraine since starting the MP. Had a couple of days where it felt like one was trying to get started (you know the senstion I'm sure), but that was about it.
The fact that the MP is going to cure my other problems as well just makes it that much better. I didn't expect the migraines would just go *poof* as soon as I got up to speed on the benicar. I can hardly wait to walk into my neurologist when I am done and tell him how I did it. I suspect he'll listen, too! 
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Knochen
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| Joined: | Thu Feb 23rd, 2006 |
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Posted: Sun Mar 4th, 2007 21:12 |
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I have given up coffee entirely for a few weeks now, and apart from a certain nostalgia, I really don't miss it. The withdrawal period was short and not really difficult, thanks, I believe, to benicar. I have tried to quit coffee before in my life and have suffered badly for it, so this was quite a surprize!
About a month ago I had a mole on my arm just turn to a sort of sludge and dissapear. It felt itchy one day and I just wiped it off with a handkerchief. It left a small hole (about 6mm by 9mm), very clean on the bottom, and that healed up quickly and looks like it will leave no scar. I'm assuming my immune system took a dislike to this mole!
Just FYI, the other two chronic lesions on my arms have also healed since I started the MP (they were sores that scarred up, then they would crack open and bleed spontaneously and then erode to a sore again, over and over for about 3 years) There is a very little scarring there now, but it's just a mark and not the thick knob of scar that it used to form between breakouts.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 763 |
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Posted: Mon Mar 19th, 2007 08:05 |
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Thanks for your updates.
Brain fog being what it is I had forgotten about these updates.
Thank goodness I found them, as they are so inspiring.
Re: skin...although I've only been on the MP 3 1/2 months, one of the two "age spots" I have, which is about the width of a pea on my forearm, has thinned considerably and I imagine that it is only a matter of time before it disappears entirely. (I do have an "age spot" that looks far more like a thick mole--so much so that it worried some doctors in the past--that I've had for about 30 years and it is calming down--not itchy--, appearing to shrink a bit in size.)
Thanks again, Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Dody
Member in Phase 3
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Posted: Thu Apr 5th, 2007 01:15 |
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I too find the messages on this forum inspiring. Knochen, your response to my questions about white and black clothing, a few months back, was very helpful to my figuring out what to wear for maximum protection and minimum discomfort. Thanks again! I'm two weeks into Phase I and so so glad to be finally on the MP.
Dody
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Lyme Arrhythmia Vertigo Meningitis lithium tylenol cover up outside mod low lux ballcap inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25Jan09 7
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Knochen
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| Joined: | Thu Feb 23rd, 2006 |
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Posted: Sun Apr 8th, 2007 02:11 |
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Dody,
Congrats on phase 1! Hope it's going well for you so far. You'll have some good days and bad days, but knowing you can get some control makes them so much easier to take. It's those times when you do it to yourself that you will wonder whatever posessed you. Human nature, I suppose; gotta push, push, push.
Funny I should say that... Yes, I have been attempting to do more lately. Oddly enough, it has worked for the most part. I was simply unable to do anything physical for months. Cleaning a room would put me in herxville for a couple of days and I would have all the mental powers of a gelatin dessert (your choice of flavors, they all seem to be about as bright)
I cleaned my home office last weekend - not a small thing, as bits of detritus have been accreting there for many moons. It took two days, and was more like an archeological expidition than anything else. I even moved a shelving unit to a better arrangement, and that involved unloading all the stuff from it and putting it back. I was sure I would be a basket case the day after, but I wasn't. Wow. I felt FINE. I even felt good on the days I was doing the work. That hasn't happened in years! It used to be a rule that Exertion = Badness. I've done some more this weekend, and it went well for part of the day, then I crashed. I think I pushed too hard. Tomorrow may be interesting.  My point is that you can look forward to some good, even great days. Right now, they seem to come without rhyme or reason, they just show up.
My light sensitivity has never been as bad as some here, but it has increased on phase 3. That's probably a good sign that the meds are doing what they should be, but the prospect of sunny summer weather makes me cringe a bit. I seem to have more neural response to light and can become curmudgeonous, or worse, unshutupable. King George III at least had trees to talk to, I have to stay inside and debate the furniture when I go slightly mad.
This section of the forum really helped me when I was starting out nearly a year ago. Wow, it hasn't been quite a year yet? Amazing how far I've come in such a short time. Do I think I'm near the end? Not yet, I'm still digging out bugs from the corners and having some pretty hefty herxes. But it does seem to be moving forward, day by day. So if you feel like it's going to take forever<use your disgruntled teenager voice here>, the very act of keeping up with all that the MP entails seems to make the time pass pretty quickly. I don't live by hours and days, I live by doses and med increases! 
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 763 |
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Posted: Mon Apr 9th, 2007 09:01 |
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| Thanks for the laughs in your last post. If you don't write for a living, you outta. Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Vicki SA
Member in Phase 3
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Posted: Wed Apr 11th, 2007 10:47 |
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Knochen,
Good to hear of your progress. Yeah wellness kind of creeps up on you, doesn't it? It is so good to have some control over your illness!
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Knochen
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| Joined: | Thu Feb 23rd, 2006 |
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Posted: Fri Jun 1st, 2007 00:44 |
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Well, it's been one year as of May 28, 2007! Woohoo! Phase 3 and loving it.
Improvements? You bet! Many of them. Would I start all over again if I had to? Yes I would. Am I very glad that I've got the first year under my belt? Oh yes indeed!!
It has been generally better, and certainly never really worse than when I was sick pre-mp. Knowing there is an end in sight is what keeps me going. Of course, there was an end in sight before the MP too, but not quite the same rosy portrait, something more like Edvard Munch would have painted on a bad day.
No more constant migraines, knocked off all the excess weight I was carrying (about 40 pounds), joints more flexible, mood (usually) better, brain (usually) improved, bowels improved, brain and bowels also far less interchangable according to co-workers! What's not to like?
I'll be looking for other volunteers to help carry Dr. Marshall on his velvet draped sedan chair when he goes up to collect his Nobel prize. Who deserves it more? Last edited on Fri Jun 1st, 2007 00:44 by Knochen
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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BARNEY
Moderator
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Posted: Fri Jun 1st, 2007 02:35 |
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Ken,
You got a volunteer here!!!! Life is much better since MP and if I had to live on it the rest of my life to feel this good....I WOULD!!!!
So very happy for you and all your improvements!!!
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Knochen
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Posted: Sat Feb 21st, 2009 21:54 |
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Well, here I am at day 1000 on the MP. What to say?
What I will say is that the MP works! I'm not done yet, but the improvements have been profound and lasting. I have mostly good days, some great days now. My light sensitivity is down, but not totally gone, and I'm able to do things much more like a normal person.
I have been feeling much more energetic in general and have even decided to try to get back some of my former (meager) talent at swing dancing (at home for now). The brain fog makes it hard some days, but other days my mind is very sharp and I retain things extremely well. I think the light exercise will help if I don't overdo it, and it will get the circulation going into all the corners. That may be one reason I'm feeling a bit worse lately too! Too many variables to know for sure, so I'm going to eliminate as many as possible. The herxing still waxes and wanes, but is very tolerable except on very rare days when I might have some neural problems.
My labs came back very good and my numbers are trending in the right direction. D25 was up a bit, but I had forgotten my sunscreen that morning (about the 3rd time it's ever happened) and it was a very bright day and traffic was slow, so I'd just come in from a good facial sunbath for an hour and a half in the car when the blood was drawn. It was only up to 14, so nothing to worry too much about. The doc seems pleased with my results.
I had hoped to be virtually finished with the MP by day 1000, but there it is. Still some way to go, but I can tell I have the Th1 on the run and it's more a matter of keeping after them to finish chasing them out. More good days than bad now, and the really good days are really, really good! I have many many years of bugs to get rid of, so if you are reading this and are young or only recently ill, DO IT NOW - DO NOT WAIT. What I wouldn't give to get back all those years, virtually my entire adult life.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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BARNEY
Moderator
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Posted: Sun Feb 22nd, 2009 00:13 |
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You are doing such a fine job recovering, keep up the good work.
I'm with you, I wish I could have done this when I was young.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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