Discussion in 'Fibromyalgia Main Forum' started by gbean, May 30, 2003.

  1. gbean

    gbean New Member

    I'm new to the group. SO if I'm asking questions that have already been answered in the past please forgive me.
    I was wondering if there was anyone on board who have had success with the guaifenesin protocol or transfer factor protocol.
    Also, if you are someone who has heard of guaifenesin or transfer factor but hasn't tried either could you please mention why?
    I have suffered from fibromyalgia for thirteen years. I have a severe case. I am unable to work and am basically a hermit. There was one thing that helped me greatly for a year but then stopped working. It was Noni juice. I had my natural killer cells tested and they were very low. After a week of noni juice I had no more pain and fatigue and went back to work. This lasted for a year and I found out that My NK cells had doubled. This makes me think that as long as we could change our immune system we would be better. However, it stopped working after a year and I have tried it again and again and it doesn't work anymore.
    I am currently trying guaifenesin therapy. I have to admit I don't have a lot of hope for it and hate that I have to stay away from salicylates. I see positive reviews from many on web but have to wonder if it is so succesful why am I not better and why isn't everyone on the group here on it and better.
    Sorry for such a long post. Thanks for your help.
    Gena Castanon in Houston
  2. gbean

    gbean New Member

    Hi Again,
    Also, another treatment out there is Dr. LOwe's thyroid treatment for fibromyalgia.
    Has anyone heard of it or tried it?
    It's based on the idea that many with fibro really have hypothyroidism even if they test normal and that vitamins, better diet and natural or prescription thyroid meds with both t3 and t4 helps (like armour).
  3. pam_d

    pam_d New Member

    Welcome! I do not use either guai or transfer factor, but there are definitely folks here in various stages of guai therapy----hopefully you'll be hearing from them soon (the board slows down over the weekend, so please be patient). In the meantime, check "search topics" for guai and transfer factor, you'll find a lot of recent posts on peoples' experiences with them.

    Glad you found this board! I've learned a great deal here & you'll find people who really KNOW what you are going through & what life is like with FM.


  4. Applyn59

    Applyn59 New Member

    I am responding to your thryroid thread.
    Are you talking about Wilson's disease? Not the
    copper disease but the thyroid. All tests come back
    normal and you find out by taking your temp.
    There is a website all about it. Search for Wilson;s
    and probably FMS, too. Lots of symptoms are all
    the same.

    I asked my endo about it and he said he doesn't
    believe in it. However, a nurse practitioner told
    me she believes it exists. I have always thought
    I had it. My neighbor was told she did by a holistic

    Welcome to the board.

    PS I haven't followed up with it.
  5. amaryllis

    amaryllis New Member

    Bumpity bump!

    I can't help, but I know there are some of folks out there who've tried the guai therapy, right???

  6. TNhayley

    TNhayley New Member

    Hi Gena! Welcome! It seems like many of us are on a variety of treatments ... and I think the general consensus is that one thing that works for one person doesn't always work for another. There is no single thing out there that I know of that works for everyone.

    I take guaifenesin and believe it helps me. There is some evidence that suggests that staying away from sals can be helpful in and of itself. I also take thyroid hormones (Armour), Klonopin, Neurontin and I just started Effexor. I also supplement with MSM, mythelcobalamin, multivitamins, magnesium, calcium , Omega-3 Flax Oil, probiotics and Inositol. I try to eat healthily and exercise. Everybody seems to have their own "cocktail" ... and it is through trial and error that they have found what helps.

    I would definitely say that as well as doing Guai ... you should try to address any sleep issues you have. Ambien seems to be a favorite, but there are other things that can help that run the gamut from supplement to RX to homeopathy. There is a lot of info here and recently a very long thread about guaifenesin with people posting pros and cons. Browse around and use that ole search button ... you'll find much! This is a helpful and compassionate place! Best wishes and hugs,
  7. rockie

    rockie New Member

    Hi, I'm new, too. I've been on guai for almost three years now. It took me a while to find my correct dose, and then things really started happening. I was in so much pain that sometimes I would cry at night because my legs hurt so much.

    But now I am feeling better. I didn't realize how much better until I recently had to stop taking it because of an unrelated surgery that's coming up. I was told to stop taking all otc medicines. After just 5 days off guai, I realize how much better I was getting. My arthritis pain was masking my recovery from fms.

    For anyone thinking about guai, go for it, but be patient and dedicate yourself to staying in for the long haul. It took me over 2 years to feel better overall, not for just a day or so at a time.