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alycia2
Member
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Posted: Tue Jun 16th, 2009 14:53 |
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you are so right kochen. i've never seen anyone post a picture before but that one speaks volumes..i think part of the difficulty in getting on board with the mp is because it is so new and not mainstream. i think a lot of people on the mp are folks who have tried so many other things and are kind of at the end of their ropes...and do feel much like the guy in the fox hole...
this treatment comes into our lives and the promise is so great...but it is new...and most people way into the study are still on meds..i read a thread recently where someone was trying to get specific information about whether or not trevor or amy are still on meds and they were kind of told to just not worry about it...what difference does it make? but to someone that has already been through the ringer, it does make a difference...people want to know if this works...
granted, i feel better and if i had to stay on these meds to be able to function i would in a heart beat...i wouldn't like it necessarily but i would do it..i think most of us would do whatever it takes to be able to have as much of a life as we can get...i think we do have to approach this like a scientific experiment...if the initial hypothesis is correct, we are going to get well...if not, well, we are better than before and may need this mp for life...i think sometimes, that is the question...or seems to be asked frequently..how long will this take...will i ever be truly well, etc...
when my blood work started doing crazy things i became afraid that i was hurting myself on the mp...i no longer feel that way and i am once again committed and grateful for this process...but, do i know i am going to get to be 100% and off these meds someday...how can i know that..i don't know that...no one knows for sure how any of us are going to truly respond to all of this...that's why i think it just has to be taken a day at a time and in time, we will know...it's not worse than it was before mp and we all have to try hard to remember that...because it seems for most people that it the case....the meds are safer than the stuff i was on before and i can sleep now...that in itself is a marvelous gift!!!
take kochen.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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Knochen
Moderator
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 425 |
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Posted: Tue Jun 16th, 2009 17:10 |
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i read a thread recently where someone was trying to get specific information about whether or not trevor or amy are still on meds and they were kind of told to just not worry about it...what difference does it make? but to someone that has already been through the ringer, it does make a difference...people want to know if this works...
I understand where you are coming from on this. The answer is something of a moving target, however. If you can define "well" or "cured" for me, then I can tell you if we've reached it.  I think what will happen with most people is that they will hit a point of "good enough" and be able to drop all meds, including Benicar. But there are those who will want to see if there are more improvements to be had by continuing on with Benicar. It's a tough test, since there is no objective standard to gauge by. It' never been done before. But as to the question, "Does the MP work?" Oh yes, it works, that's been proven. What is still being discovered by all of us brave pioneers is how long it takes and what you need to do to get to a point of "good enough". The individual varaitions make a simple answer impossible.
To help put it in perspective, the mainstream treatments attempt to give you a life that is "good enough"; they don't even make a claim to cure or eliminate the base cause, they are purely symptom reducing and may not continue to work for very long. And yet people flock to them and are happy. Fine with me, even though I know they will suffer later. We all make our choices about what we consider sufficient.
Right now, I can at least feel like the fellow who's doing the carrying in the trench rather than the guy being carried. That's a big change!
(In case you re wondering, that picture is from some movie footage at taken in the British lines on the first day of the battle of the Somme in WW1, 1916. Over 57,000 British casualties and nearly 20,000 British killed that day. Is it any wonder the man in the trench has the dumbfounded expession on his face? I can almost hear his mind saying "What are you doing up there with a movie camera? Get in here and HELP!" Amazingly, the identity of the man he is carrying is known [dont have it here, sorry] but he died later. I'm grateful that someone made the time to take this film so that we have this record, although it must have seemed strange to those on the scene at the time to be taking movies.)
This forum is our record for posterity. Our suffering and our willingness to put ourselves on the line to find a cure may, perhaps, someday be looked on with a certain remote horror. Our methods are doubtless crude first steps, but they need to be taken. And for those of us who need a cure now, this is what we have to work with. We are only now realizing how big the fight actually is, just like this dazed man in the picture. And like him, we look at the indifferent world in shock as we go about our task.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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marion villa
Member
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Posted: Tue Jun 16th, 2009 22:31 |
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Kate.
Terrible! look I was a dentist and a musician, and now I have my fingers soooo crooked I cant get in the dentist gloves or play the piano or the guitar. Not that path to follow anymore, so I started singing lessons, one year brfore MP and I was doing so well, so then, I got my larinx so swollen thet I ended in ER because I couldnt breath, i couldnt talk either, just whisper, my vocal chords were swollen too, so I goth ASTHMA treatment!!!!! . I payed a lot of money eventhough they didnt helped me at all!!!! So now, I listen to the music and I learnt Gestalt therapy, now I am giving psicotherapy and I am happy because this I can do.
the Mp is the only treatment I could found which gave me an explanation about what was happenning to me, logic and well science based,not the" your immune system is crazy and it is attacking yourself" or "you make the Ra happen because your thinking is very rigid and self critic" and all sort of psicologic propaganda or esoteric. I have an infection, and those bugs are very sophisticated and clever, they had some time winning the battles, but thanks to dr, M and the other reaserchers, now We will win!
slowly but surely.
please take more benicar and less abx,Maybe your IPR is so high and debilitating because you are rushing a little bit. We all do that some time
take care
marion
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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marion villa
Member
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Posted: Tue Jun 16th, 2009 22:37 |
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Alycya Kate:
Dont look to those terror movies, !!!! Doesnt help you neither the discovery health stories about people who suffer because of th1 illnesses wanting to get better but not being able, because the drs dont know!!!!
We are in a better place now!!! Go see forward
get the courage to CONTINUE dont loose energy watching the suffering we all know yet.
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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marion villa
Member
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Posted: Tue Jun 16th, 2009 22:50 |
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knochen :
so well said!!
and eventhough gestalt psicotherapy relies in the here and now, I want to think of the future as the thing resulting of my MP work here and now, and I hope This future will be bright, painless and like a professional salsa dancer, OK????
We are working for our future not to be as our past was. At least for myself that's it.
so lets not loose the focus on the finish line.
marion
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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alycia2
Member
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Posted: Wed Jun 17th, 2009 17:21 |
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i too think that the way we are treated in mainstream medicine is appalling...so many doctors just live in this tight little box that says...life is easy...just follow my instruction, don't ask questions..take this pill and go away...basically...that's how i feel..and maybe doctors have to be somewhat black and white in order to deal with sheer volume of people they see in a day (that too could be controled)...i don't know..but, it's so demeaning if you have any kind of intelligence at all, any kind of awareness, any kind of philosophical questioning...we are told on one level that we must become pro-active in our care, become an advocate for ourselves and then when we do and if we are able to even remotely start to connect the dots, we are treated like nut cases, hypochondriacts, immature, i had one doctor tell me and you could tell she kind of got off on it, that i had white coat syndrome...that when i would see her..my pb would go up...by the end of my time with her, that was certainly true, but it wasn't for the reasons she thought for sure!!!
my husband is a huge star trek fan....he will be so happy when we get the tri-quarter perfected
and yes, we are pioneers..to be honest, i have felt like that for most of my life...i have always turned to alternative methods for healing, eating, relationship work, employment...you name it..i have never been satisfied with the status quo because it has never served me very well. i am a thinker and a wonderer and the status quo doesn't seem to like those kind of people very well...favorite movies...logan's run, thx1138, harold and maude and i too want to get well not just stabalized on my "meds".
take care kochen and hope your're having a good day...
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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alycia2
Member
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Posted: Thu Jun 18th, 2009 03:13 |
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don't worry marion. i am looking down the road..thank you for your caring. i'm sorry that the arthritis got so bad before you found the mp but it sounds like you are doing so much better...maybe you will be able to play your guitar again some day..i have been taking lessons for a couple of years now...i've always wanted to learn...did you play well? learning to play an instrument with brain fog is an interesting endeavor but it does bring me joy..
take care marion...talk to you soon.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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marion villa
Member
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Posted: Thu Jun 18th, 2009 15:44 |
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I played piano well that was my instrument, and little guitar, but I loved it because you can carry it and tha piano is too heavy.....
Now my son is playing guitar very good, so he inherited his mom´s talent!!!!!!
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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katezzz
Member
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Posted: Thu Jun 18th, 2009 20:40 |
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Wow, Knochen, that was an eloquent commentary on the picture.
In the first few months of the MP I did feel more like a trailblazer. Committing to one to as long as three years of feeling crappy, dressing funny, and living in the dark was not easy. Like the rest of us here, I felt it was worth it to be cured. So it was disconcerting to see the goalposts had moved. Different estimates started turning up .... three to four years.... three to five years.... now three to six years.
I don't know how to deal with this. I feel bad so often. I can't do anything physical for even a few minutes without feeling like I'm going to faint, and the brain fog is so terrible I haven't accomplished what I need to do academically. I thought was going to collapse when I went to the pharmacy last week; I haven't left the house more than once a week since the semester was over at the end of April. I actually started this post few days ago but didn't finish because I felt so emotionally fragile. I feel better now, but can't count on it to last. This is really tough.
kate
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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Madhouse
Member
| Joined: | Sat May 16th, 2009 |
| Location: | New Jersey USA |
| Posts: | 117 |
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Posted: Fri Jun 19th, 2009 06:05 |
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Hi Kate, I just started the MP 3 days ago and know what you mean. I keep wondering if I should just take the DMARDS like the rest of the world to keep my RA at bay. I know many people on Methotrexate who do very well. I did quite well myself while on it. I wonder how long will it take and will I ever do as well on the MP?
BTW do you do any form of exercise? I am a Physical Therapist and know the importance of exercise for Rheumatic conditions. It does not have to be elaborate but it will make you feel better in every way. Best of luck.
Mad
Last edited on Fri Jun 19th, 2009 06:06 by Madhouse
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15 Years IBS, 2 years RA.
Started MP June 16,09.
Phase III Oct 3,09.
25-D 10ng/ml.
Meds: Benicar 40mg Qid, Mino 100mg and Clindy 150mg every other day, Zith 125mg every 10 days.
Avoiding direct Sun, Using NOIRS.
Symptoms 70% resolved.
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katezzz
Member
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Posted: Mon Jun 22nd, 2009 19:24 |
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Hi Mad,
You know, I started to respond to you when you first wrote... but these days I find it hard to write anything more complicated than a grocery list. I'm feeling like a normal person today, so I'm going to hurry up and write something before I become mute once again, which is likely, especially since I just started Phase 2.
Of the women I know with RA who have done DMARDs, only one could be called a success story... although I haven't heard from her in several years so that may have changed. Others have felt "much better" but still had a lot of ups and downs, which seems to be true of Kathleen Turner even though she's an advocate. And those who took methotrexate found it was no longer effective after a few years. Although I was tempted at times, it seemed like too much of a crap shoot; I was worried that it would cause the RA to spread to as yet unaffected joints... and that's probably true. I think my taking minocycline all these years has kept it from spreading, though it didn't clear the established inflammation. The MP takes the AP to the next level and I definitely think you made the right decision. Since you've only had it two years, I imagine you'll see results a lot sooner than I will.
I've often thought that my joints feel worse partly because I've been increasingly inactive over the years, and the muscles supporting them have atrophied. The MP seems to have accelerated the process. I have a total knee replacement that is no longer working correctly– it feels like slipping gears, like some involvement with the patella. Even swimming is difficult as I can only bend it very slowly and carefully. Do you have any suggestions to build up strength without putting too much strain on the prosthesis? It seems like a catch-22. Also, the MP cautions against exercise, even if you feel up to it, which I don't. So what are my options?
kate
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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eClaire
Member
| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
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Posted: Mon Jun 22nd, 2009 19:59 |
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katezzz wrote:
I read some moderator replies saying it's not good to be on Phase 1 too long, yet the guidelines say don't add an antibiotic until you don't have IP.
Cynthia did a good job of suggesting how to gauge moving forward.
Somebody correct me if I am wrong, but I no longer believe it is correct to say that it is not good to be in Phase 1 for too long. I believe that belief had to do with the concern that a person's CWD would develop (hmmm...brain fog, can't think of the term) resistance to the Mino on Mino alone. I do not believe that is a concern any longer.
I am currently sticking at one level of abx (Mino alone @ 2.5 years into the MP) because according to my red blood cell and kidney labs, I am having plenty of IP even though the IP I can actually feel keeps retreating. It is like I am discovering a new baseline from which to judge IP. When my kidney labs finally improve, I'll ramp the abx and move onto another abx combination I've tried before (I have not taken Zith more than once and have never gotten to the 3-way combos).
I provide that bit of information to illustrate that there are a number of ways to assess IP as you go along.
I will say that i think it is wise to be able to handle 40mg Benicar q4h for at least a week before moving on to a combination of abx.
Hope you find this post helpful, Claire
____________________
38mo 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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John McDonald
Foundation Director
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Posted: Thu Jul 9th, 2009 21:00 |
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Kate - the important thing is to kill the bacteria but not the patient. So do your best to modulate your abx dose for tolerable herx. Mind you, you are the only one who can judge a tolerable herx. The definition changes too. Right now you are on summer vacation from teaching (yes?) so you can stand a bit of brain fog and a little more herx stress. When the school year starts you need to manage your herxing so as to keep your job and to do it well. I find that I move up and down on my dosing frequently.
Having said that, sometimes phase 1 and early phase 2 are just plain hard until you kill enough microbes.
Somebody correct me if I am wrong, but I no longer believe it is correct to say that it is not good to be in Phase 1 for too long. I believe that belief had to do with the concern that a person's CWD would develop ...resistance to the Mino on Mino alone.
The way evolution works is that critters including us adapt to environmental pressures. Minocycline works in a way that is harder for microbes to adjust to, but they have adjusted already. I know that because 25mg of Minocycline on the MP was far more effective on me than 200mg of Mino on the Road Back Protocol. Clearly my bacteria had evolved defenses that the benicar easily stripped away. But again, got my bottom kicked when I started phase 2. So I had a raft of bacteria that were resistant to Mino only even with Benicar. And again when I started phase 3. So it is wise to be worried about resistant bacteria. But it is also wise to manage your herxing so as not to erode joints or have heart or lung issues or such. So please, add a 2nd antibiotic when you can but don't do it rashly either. It all depends on how sick you are and what tolerable herxing is to you. But any critter may eventually develop resistance.
My take on it is that if you are herxing enough then you are killing enough bacteria - carry on.
john
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RA, dx-June/2002, AP from Feb/2004, MP from Sept/2005
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Sallie Q
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| Location: | Hope, Australia |
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Posted: Fri Jul 10th, 2009 00:43 |
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Hello Kate
just for comparison I am under a lot of personal stress right now but feel I am still improving and better at doing MP since cutting back on the salt I added to food, while putting a 1/4 teaspoon of sea salt into each litre bottle of drinking water I have in my room (will start doing it at work from next week also) 
I used to think I went through phase 1 too slow, now I think I went a little too fast [but in the right direction]
phase 1 and 2 were the worst for me so far.
IMHO it is always good to be on Benicar alone for longer than I feel I need to be.
and why worry about Minocycline resistance? a lot of people use it for long periods either instead of or pre-MP
In my and others' experience expect periods of depression, emotional tumult and lack of control but they lessen and shorten as MP goes on. I understand they are an awful shock to anyone who has not had these as previous problems. I went through a period a few months ago when it felt like this would last forever [and up with which it would be difficult to put... sorry to confuse Marion but I modify a dimly remembered (bad) sentence from a grammar book]. recently I am getting more joy from 10-20 minutes in a car or train than I used to get from a whole day outdoors [it's all in the mind, you know]
soon to be on new combo in phase 3, may get interesting 
Kate I love your journey story on first page, I will recommend it to my R.A. daughter who is not yet in a position to start MP and is rotting on conventional treatment
[Marion, you will carry your piano again ] .......Sallie
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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katezzz
Member
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Posted: Mon Jul 13th, 2009 00:25 |
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I'm leaving for California Tuesday and have an appointment on Friday with the surgeon who did my second total knee replacement (the first got infected). In the interim, I'll have the four x-rays he's ordered to see what's going on with my patella (pain, clunking, not tracking correctly in the femoral groove). If I need surgery, which seems likely, I'll need some guidance about weaning from Benicar, which I believe is necessary because they will surely give me antibiotics. Unless there's a way to stay on Benicar for the protection it offers and not get high doses of antibiotics in the hospital. Since I had a nosocomial infection with my first knee replacement, this whole prospect makes me nervous. But my knee is in bad shape and really need to find out what's up. It was so swollen for the past year that I was dragging it around like a tree trunk. But the swelling kept me from bending it and feeling what was going on. The good news about this, of course, is that the Mino/Zith combo (presumably) knocked down the swelling. And I should also report that I'm out of that horrible fatigue/depression/brain fog/pain cycle I was in for two months. I felt like YouTube's David after Dentist (http://tinyurl.com/cf4zko), wondering if it was ever going to end. Now my mind is clear, I can articulate my thoughts, and I feel a sense of vitality that I haven't felt in a long, long time. I feel encouraged, not just because I feel better, but because I have the proof of my own experience that the MP works the way people say it does. I'm sure that I'll herx again but at least I'm confident about the process.
I hope some of you out there can explain to me what I should do and in what time frame if I need surgery in a couple of weeks.
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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DNStog
Moderator
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Posted: Mon Jul 13th, 2009 00:45 |
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Kate...here is the relevant Knowledge Base information on having surgery:
http://mpkb.mp-dev.com/doku.php/home:special:surgery
I've had four surgeries since being on the MP. The first one occured after two years of treatment and I got along quite well because my immune system was working so much better than pre-MP.
The only time I dropped Benicar was the day of surgery. I started back the very next day. Since I did my homework by referring to the topic above, I was able to pre select an antibiotic for all of my surgeries. I had already taken a year's worth of Clindamycin for the Phase II Modified without any extreme herxing so I requested it for surgery... and all three of my surgeons complied. The only herxing I had was extreme fatigue, lack of energy and muscle soreness which went away after four days.
Wishing you well, gently...Donna
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MP started 12-27-04
Sarcoidosis Systemic/Uveitis/ Hypothyroidism/ Raynaud's Phen/Paraesthesia/rhinosinusitis/ asthma/depression
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katezzz
Member
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Posted: Mon Jul 13th, 2009 05:09 |
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| oh, thank you. I thought it must have been there somewhere. I searched on variations of MP break and surgery but didn't find it. Glad you knew!
____________________
RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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DNStog
Moderator
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Posted: Mon Jul 13th, 2009 06:24 |
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Dr Trevor Marshall wrote:
I wrote new guidelines some months ago which explained the new knowledge about how Benicar acts. Please read the new guidance. It has new stuff in it about management of immunopathology which is important for everybody to understand.
http://AutoimmunityResearch.org/phase1.pdf
Above all, when you stop giving somebody Benicar, their organs lose the protection it provides. Yet the immune system continues to run (even without Benicar) for at least a week or two, generating full IP. Never stop Benicar in a crisis situation unless you know exactly what you are doing
The same guidance applies if somebody has been given too large a dose of antibiotics. Benicar is your friend, not your enemy...
I think a very significant change is that stopping Benicar is always considered to be a risk while on the MP.
Also...don't forget your ER instructions:
In case of hospitalization for an accident/illness, it is advisable that all MP patients print out several copies of the ER Instructions linked below. Place one in your vehicle, keep one on your person, and place one in your home for the easy access of a family member. Benicar is organ protective and its withdrawal can compromise your organs. ER Instructions In addition, all MP patients are advised to update their Advance Medical Directive if they have a DNR listed.
Kate, You should carry at least two to the hospital with you...staff can be very stubborn when they don't understand the need for Benicar.
____________________
MP started 12-27-04
Sarcoidosis Systemic/Uveitis/ Hypothyroidism/ Raynaud's Phen/Paraesthesia/rhinosinusitis/ asthma/depression
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
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Posted: Thu Jul 16th, 2009 03:52 |
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Hi Kate.
I will second Donna's comment about having the Foundation's E.R. Instructions when you are negotiating with the hospital staff about your Benicar treatment. Somehow when it is printed out with a nice letterhead and explained in highly technical terms it all is so much more convincing.
When I needed to visit the E.R. this spring I printed up all that I wanted the doctors to see and placed them in clear sheet protectors. (Current meds, ER instructions, etc.). They seemed to appreciate being able to read instead of getting information via the interview process.
Because you are just getting started on Phase 2, it is all the more reason to want to keep the Benicar dosing up this summer. The Zith tends to accumulate and once you've found it's intolerable it's a bit of a wait for it to clear out. I guess you probably have already read that caution before.
There are some tips on traveling here: Travel and outdoor activities
Have a safe trip.
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
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eClaire
Member
| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 338 |
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Posted: Thu Jul 16th, 2009 17:38 |
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Kate,
To underscore this discussion, you might want to follow this discussion (if you are not already doing so): http://marshallprotocol.com/forum11/13377.html
In this discussion, Marshall explains to the person needing surgery,
"I need to explain the weaning procedure directly to Doctors because you need prescriptions for an alternative ARB, and Doc needs to keep a good eye on you as you wean.
As the medical profession starts to better understand immunopathology it will become easier and safer to get members on and off the protocol, but right now it is a time-consuming task for me."
(Hope I haven't repeated anything above.)
Claire
____________________
38mo 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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