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Shari Gold
Member
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Posted: Sun Oct 12th, 2008 21:32 |
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Thanks Chris ... thought that was what you would say.
I went back over the Vitamin D tutorial and found the reference to the 25 D rising as your 1,25 D comes down. I read and re-read that over and over. There was also a quote at the bottom of the page of another MP member struggling to get their 25D down, but eventually, it did. It just takes time.
I was also one of those whom my chiropractor pushed the Vitamind D/ cod liver oil supplement on for years ... so now doubt, I have alot of this stuff still stored in my body for a rainy day.
One quick question though ... as I mentioned, I feel that I am plateauing on my minocyline dose. I have everything set in place to begin my phase 2. Is it worth lingering at the current dose and seeing if my 25 D comes down before progressing onto phase 2 to see if there is more a response at this dose .... or seeing as I am able to tolerate things pretty well .. just move onto the next phase.
I know this is not a site for medical advice here, but I am more or less just asking from your own experience.
At this point, I am leaning towards phase 2 - and then of course, if things become intolerable, I can modify.
Thanks,
Best,
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Sun Oct 12th, 2008 22:22 |
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Shari,
I was at the other end of the experience range. My 25-D was low (17 or so) to begin with, and it took 6 months or so to be able to tolerate 100 mg mino, and I was urged to move to phase 2 before I could fully tolerate the 100 mg mino.
I don't have a link to pass on at the moment, though I do remember seeing something about this on the MP site. I lost my crib sheet of links in a disk crash a few weeks back, and right now I've got to run to a dinner appointment.
So, I can't answer out of experience, and I don't have have the link or time to find it again to give you a solid answer right now. Please pardon the delay.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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patrickburke
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
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Posted: Sun Oct 12th, 2008 23:20 |
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Hi Shari,
It could take a long time for your D levels to fall.
"Plateauing" for too long with any dose of MP abx can sometimes induce intolerable IP. It certainly did a few times for me.
Your body is now in a rapidly changing state of flux and you have to keep the balance as best you can. You are correct that you will be able to re-adjust your meds if the IP becomes too strong. Extra benicar is always recommended as the first thing to try if that happens. I always tried to very carefully control things with the correct abx dosage as opposed to extra Benicar though, I saved that and other palliatives for the times when I really needed them !
If you and your doc do start you on phase 2 remember to drop all the abx to starting doses as per the guidelines. Please be sure read them very thoroughly and then read them again. The optimal abx combination is in phase 3 and it is recommended to get onto that as swiftly as is tolerable.
It sounds as though you are doing very well  .
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Shari Gold
Member
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Posted: Sun Oct 12th, 2008 23:46 |
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Wow ... thanks Chris and Pat for the fast follow ups!
Chris ... no worry's on the links, when you have time and if you can find/ retrieve them, that would be great.
It is interesting to hear everyone's individual experiences w/ regards to "when" they moved on, and how they tolerated the dosing.
Pat, yes, I am doing well with the protocol. Honestly, the hardest part is just moving around in "normal" society and all the lovely looks I get. In the beginning, I was so vain about the noirs (lovingly reffered to as blu-blockers, what my grandma used to wear). Now, I don't even give it a thought. I just mentally visualize Audrey Hepburn and think, it's other people's issue when they stare, not mine. I guess this is a window into the world of what it might be like for folks with other types of disabilities and when they draw stares. It has been a wonderful learning and teaching experience for me to share w/ my children (to be tolerant and respect others). The best part is ... they don't think I look weird .. now that's saying something!
The other difficult part for me ... ummm, that would be the food. As I have posted before, I am really a carnivore, but I think I am going to mend my ways and go more of the veggie route.
Ummmmm if anyone out there has a wonderful recommendation for a type of bread that is "wheat free" and safflower/ sunflower oil free ... that would be great! I just realized that my Brown Rice bread has safflower oil ... so I am thinking of experimenting w/ some of my own bread making (God willing .. not the best baker!)
Also ... looking back over some of the posts on the main Marshall site... I know that folic acid (supplements) are no nos... but, most of the veggie folk are getting their protein from beans/ legumes ... I've seen Natalie's frequent posts about lentils and chickpeas... since this is a natural/ whole food source, this is okay?
One other thing I would like to add to "How far I have come"..... I can actually read a book ... a fiction book that is .... for pleasure. In the past few weeks I have devoured two books (got a lot of time on my hands these days during the day and can't stand watching all the presidential mud slinging!!  ). I have not been able to read for pleasure for a very long, long time ... I know this is just the beginning. I used to write creatively and that all but went out the window. So wonderful to be able to focus and keep the storyline/ thread going! This is very significant for me as I know it is for so many Th1 brain fogged folks.
Thank you so much advocates ... for all of your input and follow up.
I hope some day to be sitting in the same place as all of you are now, ooking back on this journey!
Best,
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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patrickburke
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| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
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Posted: Mon Oct 13th, 2008 00:03 |
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Shari,
The lovely looks .
I remember once a guy ran his car into the back on mine whilst I was fuelling it up .
I walked around the back to see what was going on and found him looking at the (zero) damage. I asked him if everything looked OK, he looked up at me, threw his arms up in the air with a look of horror on his face, reeled backwards and fell onto his own bonnet causing more damage than the bump had  .
Don't you just love those Noirs LOLOL.
Pat.
Edit. That guy was a big scary punk rocker too .
Last edited on Mon Oct 13th, 2008 00:07 by patrickburke
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 57 |
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Posted: Mon Oct 13th, 2008 06:37 |
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CL, Pat
Hope you intend to post in the Lifestyles collections
"make my day" isn't it? ...............Sallie
Funniest MP experiences
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
modPh2done 25Dnow~6.5 eGFR49 creatinine100
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Julia
Advocate (on leave)
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Posted: Mon Oct 13th, 2008 11:12 |
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Shari,
There's no requirement to go veggie on the MP, most of us are carnivores. Just watch that the meat is lean, and real meat, not burgers or sausages or stuff that you can't tell what might have been added.
I highly recommend getting yourself a good breadmaker, then you can control exactly what goes into it. It makes such delicious bread it's hard to stick to a low-carb diet, that's the only thing!
Oh, the joy of being able to read again! Getting your brain back is a wonderful feeling. Good old MP!
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Shari Gold
Member
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Posted: Mon Oct 13th, 2008 16:54 |
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Pat .... I read your post last night and LOL. You've got me beat! I do get the stares in traffic. I keep waiting for the day when the LAPD pulls me over for suspicion of being a terrorist. I know I am probably not the first one either.
Isn't it humorous how "interested" everyone is in you. There are some very different looking folks living in LA .. I honestly could dye my blazing hot pink, wear a dog collar and Gene Simmons boots and probably get ... less stares.
Julia, thanks for the info on the meat. I am most definitely trying to stick to boneless skinless chicken and of course Egg Whites. I am guessing hamburger is out then?
Wanted to add ... last night, I had a very interesting herx. Like I have said.. lately, I have been sort of slowing on my herxes (or at least those that are noticable that feel as if I have been thrown under a bus). Anyway... last night, or rather the last few days, I have been feeling a little "cold". I keep asking everyone in the family if they are cold and walking around in my bathrobe to keep warm. My husband confirmed that it was just me. Took my temp ... sure enough, 100.1. So... last night, I was getting chills and then, sort of like heart racing and my breathing .. I wouldn't call it difficult to breathe, but just sort of heavier on my chest/ constricted like I had just sprinted or something. At first I felt a little dazed and sort of braced myself wondering if it was going to get worse. It did not. I was very AWAKE into the wee hours (4 am!) Oh... and this all started about the same time I started to get ringing in both of my ears and it was quite loud ... like I had been to a loud concert, but of course, I had not.
Definitely a weird herx. Feeling better today .. and looking forward to the mail carrier. I am awaiting my Phase 2 abx delivery today. Hopefully I will be moving to phase 2 by the end of this week. Will keep everyone posted on that.
Best,
Shari
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
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Posted: Mon Oct 13th, 2008 17:39 |
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Shari,
Hamburger doesn't need to be out, just buy the less fatty variety.
We've been getting whole wheat buns, and not getting the too-much-carb response. The 'tolerable' concept applies to the diet too. Right now 1 large chocolate chip cookie causes noticeable IBS, but a couple of slices of whole wheat bread, or hamburger bun does not.
We do try to keep to home-made whole wheat bread, but our kitchen's been torn up for a couple of months and we haven't seen trouble when being careful about the store-bought stuff.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Knochen
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| Joined: | Wed Oct 17th, 2007 |
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Posted: Mon Oct 13th, 2008 20:03 |
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Shari,
Don't forget to look at http://www.mp-recipes.com/mp_recipes.html for some basic recipes.
You should strive to keep carb counts down, but don't worry too much about the "meat is bad for you" idea. That's just not so. Moderate intake of low glycemic index carb foods shouldn't cause you too much trouble, but if they do, you can go onto a stricter low carb diet to see if it helps. That's virtually impossible without meat though.
I guess what I'm really trying to get across is that you need to toss out all your current notions about what constitutes "healthy" eating. There's a lot of ooga-booga out there in the media and on the net. Start from the precepts of the MP, and adjust the diet to suit and you'll be fine. It's really not that hard! 
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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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Shari Gold
Member
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Posted: Tue Oct 14th, 2008 09:10 |
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Hi Chris and Knochen,
Thanks for the food tips. I am going to give a few of the recipes a whirl. Hopefully, I will be able to add to the list soon.
Thanks,
Shari
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Shari Gold
Member
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Posted: Fri Oct 17th, 2008 09:12 |
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Hi everyone,
I wanted to post this here ... doing fine, but I happened to read something very interesting and thought Dr. M might want to comment at some point.
I read a magazine called Diabetes Forecast (my oldest daughter is a type 1 diabetic). There was an interesting article in the latest issue about a "promising new therapy that reduces inflammation and it helps ward off diabetes and heart disease" .... interesting.
Quoting from article: The Aggresssive Reduction of Inflammation Stops Events (ARISE) Trial assessed the effect of one such vascular protectant called succinobucol (AGI-1067), on people who already had acute heart problems. Succinobucol treated patients saw a 63 percent reduction in development of diabetes; were less likely to experience cardiovascular death, cadiac arrest, heart attack, or stoke; and experienced reductions in insulin resistance and A1C values.
Upon further research, I discovered another article with this info:
Succinobucol is a chemical relative of probucol, a cholesterol lowering drug taken off the market in the US in 1995 because of its side affects (possible herxheimers?). In addition to its antioxidant effects, succinobucol also reduces inflammation. (By George... I think they're onto something!
Obviously, Dr. M knows of other drugs out there, like statin lowering drugs like the above mentioned succinobucol that bind to the VDR (I am guessing this is the mechanism by which the inflammation is mitigated in this particular case).. and that the Benicar is the best choice due to his molecular modeling.
Wondering if he is aware of this study or perhaps might contact these folk to share the wealth of info the MP has that helps support their hypothesis and furthur move the MP mainstream. This afterall was a national consumer health trade.
Just wanted to share!
Best of health to all.
Shari
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Dr Trevor Marshall
Research Team
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Posted: Fri Oct 17th, 2008 10:02 |
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Shari,
Please don't guess at mechanisms. There is no evidence that any drug other than Olmesartan activates the VDR.
As for Diabetes, I studied that disease 25 years ago, writing my PhD thesis on mathematical modeling of the Diabetes disease state. Have you had a look at the presentation video I gave at Porto? It will give you some much-needed background, I think.
http://www.marshallprotocol.com/forum39/12376.html
Diabetes is a Th1 disease. It cannot be treated properly with anti-inflammatories, this always leads to suffering as the patient ages, and eventually an early death. Diabetes type 2 responds to the MP. We also have two Type 1 members on infusion pumps, and we are starting to see that their insulin requirement drops as they recover on the MP. We still have a lot to learn, but we are a lot further along than you might realize, I think
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Shari Gold
Member
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Posted: Fri Oct 17th, 2008 21:57 |
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Hi Dr. Marshall,
First off ... thank you so much for responding to my question .. I am truly honored! You work is saving my life so... it means a great deal to me that you got back to me so quickly.
Regarding my post, I did not mean to guess ... merely wanted to point out that in a main stream publication there like Diabetes Forecast, they are publishing a study relating inflammation to the disesase process. I know guessing has no place in science so, sorry to have drawn that comparison, but I thought it interesting that another class of statin lowering drug is pointing researches in ... albeit the right direction .. but unfortunately, not THE RIGHT direction -- the MP.
Yes, I am very familiar with your work with insulin and have poured over some of the research posted on the MP site. I have also followed some of the case histories of MP members that are seeing great progress with reversing their type 2 DM. I know there are a few on the study site w/ type 1 that are seeing their sensitivity to insulin return. I am very hopeful as well. My daughther has had type 1 now for about 5 years, she is 8. My own health is just slowly starting to turn the corner as I round the corner on phase 1. As you can imagine, my husband is waiting in the wings watching to see what happens w/ my own progress before jumping on board with my daughter. We had big fights about my own commitment to the protocol, but for now, he is encouraged. My hope is that as my own health returns this year, I will be in a place to take on her management on the MP. She too wears an insulin pump and it is all I can manage to make sure her meds are managed as well as mine.
Thank you also for the links to the last conference you attended. They are by far the best ones I have watched to date. I don't know if my head is clearer now, or it was a really great feed (good camera work/ flow charts etc) but I truly got much more out of this one then I did previous presentations.
I also have completed a microbiology course, which I was working on prior to starting the MP and when I used to watch any presentation of yours before, my mind just went in circles. Now starting to understand the nomenclature and the processes ... so the training wheels are coming off.
Thank you again for your contribution to humanity ... I tell everyone I meet that someday you should win the Nobel prize in medicine ... your work is truly ahead of its time and saving lives!
Best,
Shari Gold
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Shari Gold
Member
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Posted: Fri Nov 14th, 2008 03:13 |
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Hello all .. it has been a while since I last posted .. been living and herxing in phase 2 and what a difference phase 2 makes!
I was just reviewing my phase 2 guidelines from my doc's office. I am still at the lowest dose of the Abx (B) and at about 75 mg of Mino. I am wondering ... a few things about incremental increasing within the 10 days.
Is this something I can post here or could someone email me directly as to not get into trouble with posting too much.
My immunopathy to date has been very productive. Over the last few cycles, I had a day where I was hit w/ a wall of fatigue and then the next day all of my back muscles and hip muscles ached like I had just run a triathalon -- but I haven't excercised in a very long time. My latest IP has been nausea ... this is a new one. Never really get too sick to my stomache. I actually thought it was a little flu bug that has been making the rounds here in LA, but ... after my next dose of Abx, I quickly realized that it was IP and then what followed next, the fatigue and back/ neck muscle aches were all the same.
Sitting where I am sitting right now, it is hard to believe that most people recover to some extent within 12 to 18 months ... I don't know ... I can hope for that, but this really feels like I am wading in quicksand here for a while.
Phase 1 seems so ... light and fluffy compared to this
I am managing the herx though ... nothing intolerable to date, thank goodness I can sleep during the day when it is really bad.
Thanks for any help w/ dosing!
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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natalie17
Advocate
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Posted: Sun Nov 16th, 2008 06:29 |
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Hi Shari,
I'm not quite sure what your question is - from what I can tell (and at this stage it would be inapproproate to be any more specific), you do understand the dosing schedule.
It is normal to experience new immunopathology in phase 2. I speak from both personal experience and in experience of reading the boards. However, if you're ever concerned about the level or types of immunopathology you are experiencing, contact your Doctor ASAP.
Remember that if it ever creep towards intolerable -
My immune response / symptoms are too strong. What should I do?
.. and to consult your Doctor before any med changes.
You may also like to have a read of ;
Nausea What should I do for my stomach problem?
Sea-Bands help with nausea for some people. They can usually be bought in pharmacies.
Sitting where I am sitting right now, it is hard to believe that most people recover to some extent within 12 to 18 months
You may like to re-visit; How long does the MP take?
Personally, I have been on the MP 16 months. I have recovered to some extent, but I think I am only 10-20% there. You can see my story in my sig line.
Recovering to some extent just means some of your symptoms have reduced or disappeared. I certainly don't lead a normal life yet, but it's getting easier to see the improvements through the IP 'fog' (as I call it). Of course, everyone is different.
It also helps me to have someone see me only once a month or less as I, and people who are wth me every day, don't notice the improvements as much.
Take care ,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Shari Gold
Member
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Posted: Mon Nov 17th, 2008 11:02 |
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Hi Natalie,
Thank you for your links. I did find the nausea one very helpful.
I did find the answer to my question, sort of just moving forward w/ the protocol and went up in my Mino during the cycle. I think I am fine so far, I will know better tomorrow, it is typically at the end of the 48 hours that I feel the worst. I was a little worried to increase, but I think I am fine.
I had read a bit about your story and progress before. I am glad you are getting better as well. I know there are no hard and fast rules here. I do like your suggestion of having folks see you every month or so to confirm you slow progress. I know the ones most close to us do not necessarily see the progress.
I know I am progressing. My ability to read/ concentrate is so much better in the last four months and I have had other, non related "spontaneous" healing episodes. Small victories, but victories none the less!
Thank you for you post and best of health to you as well.
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Shari Gold
Member
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Posted: Tue Dec 2nd, 2008 10:04 |
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Hi Everyone,
I am posting here and hoping that Dr. M might chime in again.
I just read a post from one of the advocates -- Joyful -- helping another one of the members here who had a question about using a proteolytic enzyme to help mitigate pain/ w/ regards to inflammation.
Joyful obviously cautioned against it citing that the proteolytic enzymes could have the opposite effect and actually cause more pain as it broke down biofilms.
Dr. M .. if you happen to read .. this is one of those big questions I would love to hear your opinion on.
I have posted a supplement I took prior to beginning the MP last year. It is called INFLAMMATONE and it contains high doses of Protese and Serrazimes
My physician prescribed it ... one of his standards I believe, for reducing inflammation.
Here is the link:
http://store.agoodvitamin.com/deforhein90c.html
It provoked a HUGE immune respone in me. I have never been so sick. A really high fever that lasted for a week. It was very scarey.
I asked my doctor about the reaction and he did not seem to believe it had anything to do w/ the product he had prescribed.
It was just such a profound reaction that I felt it had something to do with immune modulation, but didn't make the connection until reading Joyful's post just now!
Not that I would ever, ever take this stuff again -- I have a whole cabinet of stuff that I will probably never take ... but I am curious, could a proteolytic enzyme be used in later stages of the MP (way past phase 3) to get at those deeper biofilms? And ... is neuropathy (I have peripheral in my back and hips) related to deep seated biofilms and is that why neuropathy seems to take longer to resolve on the protocol?
I would love to hear your thoughts on this Dr. M.
Thanks!
Shari Gold
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Dr Trevor Marshall
Research Team
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Posted: Tue Dec 2nd, 2008 12:20 |
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If you look at the D-metabolism overview in Figure 1 of my BioEssay you can see that there are, many, many things which have to come together in the correct balance in order to have a functioning innate immune system, and to keep the 1,25-D levels low.
http://TrevorMarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf
The Azoles upset the body's attempts to balance up key P450 enzymes. Some of these also affect the D metabolism (for example, CYP3A4). The Pregnane Xenobiotic Receptor is activated by a number of things, and substances which affect it also upset the body's enzyme homeostasis.
Marketing (and taking) drugs without understanding their full effects in the body is a fool's errand, and hopefully it will become a thing of the past real soon now, as medicine figures out how to undersatnd what the drugs are actually doing, by looking at the molecular level.
There is a knowledge explosion right at this moment. Look, for example, at the new papers out this week linking the VDR to kidney (renal) function. There is a thread I started over in "Dr Marshall's Perspective" at the MarshallProtocol.com study site.
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Shari Gold
Member
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Posted: Wed Dec 3rd, 2008 10:12 |
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Marketing (and taking) drugs without understanding their full effects in the body is a fool's errand, and hopefully it will become a thing of the past real soon now, as medicine figures out how to undersatnd what the drugs are actually doing, by looking at the molecular level. -- TM
I could not agree more with the above statement!!!!
Re: Type 1 Diabetes --
You had mentioned previously that your understanding of Type 1 is further along. I have been combing through Dr. M's perspective. Would it be possible to start a thread on Diabetes Mellitus Type 1?
I am now, fully into phase 2 and getting better/ progressing nicely. I am gearing up mentally and physically to get my daughter on the MP. She is type 1 and only 8. I know her ped. endocrine doc is a very bright and thoughtful physician. I also know that his undergrad work was in microbiology, so maybe I have a fighting chance convincing him about the MP.
I am curious how many Type 1's might be in the actual study and how young? Anything I can gather as an aide in helping convince her doctor.
I know the sooner we get on with it, the better. She seems to be afflicted with various things that I seem to have w/ regards to my own Th1 disease process ... but I am now 37 and it took a lifetime to develop these afflicitons and she is only 8 ... so it makes me really nervous about "waiting" to restore her health.
Thanks,
Shari Gold
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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