What vitamins and meds are people taking?

    • Anonymous
      September 12, 2007 at 10:33 am

      What vitamins if any are people taking? Ive seen suggestions of neurotin, Evel? and i cant remember the others..

      Thanks again Maria T. PT student hoping to make a difference!

    • Anonymous
      September 12, 2007 at 10:51 am


      Cymbalta for pain, Provigil for fatigue and I tried Lyrica but the side effects were awful.

    • Anonymous
      September 12, 2007 at 12:28 pm

      Vitamin E – more for fibrocystic breasts than anything to do w/gbs.
      Multivitamin – a good one that dissolves, no drug store crap.

      Neurontin – 100 mg. seems to help w/vertigo.

      That’s it. I guess I am pretty lucky.

    • Anonymous
      September 12, 2007 at 12:52 pm

      Neurontin mainly at bedtime, with exceptions when I have gone farther then my limits tell me:o I was also taking high b complex vitamin, may start taking that again soon.

    • Anonymous
      September 12, 2007 at 9:49 pm

      Up until now I have not had any indication from any of my blood test that I am low in any of the vitamins. I am not in constant pain and I can tollerate a zap here and a zing there. I get re-evaluated from time to time to make sure everything is holding up. No new pains or health issues have popped up that we can not work out! If they do we concentrate on them one by one. I have gone thru this pretty well and feel very lucky up to this points! I feel for the most part it is due to the team of Doctors I have and how well we have communicated with each other so far.

    • Anonymous
      September 12, 2007 at 10:23 pm

      I take 1800 mg of neurontin daily to deal with the nerve damage in my feet, which is pretty severe. I also take Klonipin for anxiety disorder, but was on that before I got sick with CIDP. I take a daily vitamin if I think of it, & sometimes half a Lortab for back pain at night. Not too bad considering the shape I am in physically.

    • Anonymous
      September 16, 2007 at 6:25 pm

      I for one, can’t live without my vitamin b’s, and lots of them. iIt really makes a difference in my neuropathies like burning , zapping vasiculations etc.For me the best one I’ve tried is the b-1 bomber but now I ordred something new and it hasn;t come yet. I already feel the difference w/out them.I know sublngual is suppose to be the best or a shot once a week but i don’t know of any doc who will do this. It’s been 3 days w/out my B’s and I’m waiting for the new one to come. I hop[e it gets here quick.I need them badly. Thanks for postingxooxoxooxxox Roxie

    • Anonymous
      September 16, 2007 at 7:51 pm

      I take Baclofen for muscle spasms and cramping, and then I also take a B-complex vitamin and a daily multivitamin. I also usually have to take a couple of extra strength Tylenol by the end of the day because of aching muscles and joints, too. That’s it.

    • Anonymous
      September 16, 2007 at 10:22 pm

      The first time I had GBS back in 86 my doctor gave me a prescription for B12 and I injected it every other day in my thigh. Perhaps you can find a doctor to do this for you. I could not see a difference but maybe that is why. My doctor was from Shillington and Suzanne Sommers writes about him in one of her books. She even talked about him on HSN. When I called, I could not make an appt. SHe said he wa not taking any new patients – even though I was not a new patient and it was the same problem – GBS for the second time. I think the AMA got to him and he no longer does much complimentary medicine. His patients rarely needed to go to the hospital.He told me if my GBS got worse, he would put me in the hospital and give me ascorbic acid drips and adrenal extract drips. The second time when the GBS was really bad and I needed him, I could not get the nurse to tell him.

    • Anonymous
      September 16, 2007 at 11:26 pm

      For my daughter:

      Vitamins – multi-vitamin, B complex, sublingual B12, acetyl-L-carnitine (neuroprotective activity), N-acetyl-cysteine (increase anti-inflammatory cytokines), high quality fish oil caps (omega 3), and vitamin D during the months she was house-bound.

      Drugs – Lortab, Ativan (rarely)

      Other – Avemar – used to shift immune response from Th2 to Th1: classified as a nutritional supplement by the FDA; classified as a medical nutriment for the treatment of cancer in Europe & Asia (pubmed)

    • Anonymous
      September 17, 2007 at 1:01 am

      I have tried some vitamins from the counter, But certain vitamins are beneficial if you need all the minerals like zinc,iron,calcium and so on . Me prefer one a day multy-viamin with one pill a day I can see the difference.
      I’ve been taken them since 2005. There is days that I feel tire and fatigue but I take my vitamin to keep going and it works.
      Diagnosed GBS 2004,:cool:

    • Anonymous
      September 20, 2007 at 7:39 am

      My post is a little different since my patient is 3 years old. Dell has CIDP. Ihave to give him extra calcium, vit D and a multi gummi vitamin. I’ve tried so many vitamins and either he won’t take them or they have so much CRAP in them.

      He’s on all of the above becaue of solumedrol, iv steriod.


    • Anonymous
      September 20, 2007 at 11:27 pm

      I take morning2multi-omega-3
      50mgof coQ10highest quality
      1 81mg asprinanti-inflammatory
      1720mgtumeric cap antiinflammtory!
      1.250mg gingerroot”””””””””””””””””””
      also settles the stomach from allthis
      other crap.
      evening;metformin-diabetes and another81mg asprin