New, Three Year Scientific Guai Study Poves That...

Discussion in 'Fibromyalgia Main Forum' started by Tibbiecow, May 25, 2003.

  1. Tibbiecow

    Tibbiecow New Member

    We don't know yet, the results are not in. My doctor's nurse has all guai patients fill out a form EVERY appointment, filling out the same questions, rating pain, headache, fatigue, sleep quality, and some others I forget. I may skew the results, I am also a migraine patient so the "pain in the last two weeks" will certainly not chart downward in a reasonably downward fashion. But my doctor helped her design the study. It is certainly not a double blind, placebo study, which is the "gold standard", and we are aware of it, but it will end up a scientific study nonetheless, when all the sheets are gathered and tallied and made into order. There are more than just a few of us on guai at this office, all of his fibro patients are on it, I believe. It must be noted that not every guai patient is being treated with the same meds for sleep and pain, which is also noted on the handouts. I really don't know if it will be three years or what, but there will be an ACTUAL SCIENTIFIC STUDY OUT THERE. By the way, while I have not been as dramatic a case as Mikie, I was getting worse by the minute without guai and do believe I would be bedridden without it. I have been on it a year. It is not a cure all, but can really reverse the effects of the disease. I just got through "cycling" the phosphates out of my jaw, which was miserable and painful. I had TMJ for 8 years and it has been gone for four lovely months now.
    Tibbie
  2. Mikie

    Mikie Moderator

    This is great, both because you are getting relief and because your doc is at least trying to collect data on the Guai's success or failure with the patients. I'm glad that there is recognition that other meds may increase or decrease the Guai's effectiveness. I do believe that the Klonopin I take helps reduce the pain and works synergystically with the Guai. That said, however, if something blocks the Guai, even when I am on the Klonopin, the pain will come right back. I had thought I was reversed enough to drop back from 2400 mgs. to 1200, but I flared, so I went back up. It may be too early or I may have to decrease it more slowly.

    If one increases dosage, toward the end of the reversal process, things really move fast.

    Please keep us informed about what your doc learns from all this, and again, I am so happy for you. I no longer clench my jaws at night, but I think it's the Klonopin doing that.

    Love, Mikie
  3. Tibbiecow

    Tibbiecow New Member

    I did clench my teeth, but for some reason I stopped. Then I went through what could, looking back, only be described as a cycle. Very painful, I would wake up and my jaws would be throbbing. Heat packs, pain pills, would you believe warm green beans stuffed back behind my molars!! to provide relief. Some mornings better than others, miserable for three months, and then it just went gradually bye bye, and I have seen it no more. Hope it doesn't come back. Now it's my knees, "old timers" on the guai support group, most older than I describe "tendon cycling" and unfortunately this too takes a while. I had this pain a lot before the guai, only not so bad.Light at the end of the tunnel is that this comes at the end of the process, and once the pain is gone, it is over until I am waaay older and maybe get arthritic or someting. (I'm 32.)
    Tibbie