Reply To: Lots of Questions

March 12, 2012 at 3:47 pm

we have cidp, gbs was initial dx. The tremor lasted for about 2 years, almost 5 years since dx, tremor is now gon.
Never took drugs other than ivig, but regarding your question on gabep, aka neurotnin, some on the site take as much as 3600mg a day for relief.
about the hair loss, could be stress, your bodies reaction to all that has happened, reaction to antibiotics I assume you took w/c-dif., could be vitamin def. or some other autoimmune. Do you have diabetes?
About supplements, everyone’s reaction or thought process is different, we did go that route, for about 1 year, it did help with several things. also had extensive testing done to find out alergy sensitivities (eliza blood work test) as opposed to standard rast blood work test. We eliminated all of the food we were “sensitive” to and saw remarkaBLE CHANGES. I feel we have “patched up” our leaky gut. The supplements were abundant and expensive, $300 a mont in the begining and after 6 months, about $300 every six months. I feel they did help, but not suggesting anything to you. Everyone reacts differently to supplements as well, the supplements are sometimes contraindicated w/ standart medicine. It has to be thougt out carefully by a trusted professional.

Vitamin D is very important, have your levels checked. There is also some work being done on Vit a and its relevance to ms/lupus type diseases (myelin sheath autoimmunes)

Building muscle mass takes a while. It was about 2 years that we started seeing improvement and honestly only in year four was the difference very noticeble with all of the working out. There is marked definition this year, profound actually, but it took a while.
GBS….getting better slowly as penned by a past member named Gene.