salfree products and Guai WHat are these?????

Discussion in 'Fibromyalgia Main Forum' started by Sheasmom, Mar 9, 2006.

  1. Sheasmom

    Sheasmom New Member

    Hello Everyone, I have a 16 yo dd that was recently FINALLY DX with FM. So all this is very new to us. I have read about these things listed above and am wondering what they are?
    **ALso any one else with teens with FM? My dd could really use some encouragment.
    ** Suggestions for newbies to FM DX?
    ** Suggestions for our family supporting her?
    ** SUggestins for her?
    ** HELP??????

    THANKS,
    sHEASMOM
  2. Mikie

    Mikie Moderator

    The Guaidoc website and you can read about the Guai treatment. If you think you want to learn more, you can buy the book, "What Your Doctor May Not Tell You About Fibromyalgia," by Dr. St. Amand.

    Love, Mikie
  3. mom4three

    mom4three New Member

    Please do remember this is not proven. This was actually a study done at OHSU that turned out not in favor of guai. Now I am not trying to discourage you at all. I just want you to read ALL of the information. I did try guai it did not work for me and a few others. It has worked for others. But I have never met them. It can get spendy.
  4. Dee50

    Dee50 New Member

    Good morning,
    You know 2 folks that the Guai Protocol is working for. Mikie and Smiffy right here at this board. I'm so sorry it didn't work for you. I do not find it spendy at all. I do find that doing your own sal-free shopping takes time.

    I think to start the Guai Protocol at 16 is wonderful. At 50 my age it will take a long time for me to reverse.
    Take care,
    Dee50
  5. Mikie

    Mikie Moderator

    I am sorry the Guai didn't work for you. It doesn't work for everyone but it has worked for thousnads.

    That study, which is often cited by the Guai naysayers, was so fatally flawed as to be totally useless. One otherwise highly respected doc keeps refering to it and he should know better.

    Mark London has done some research and he is convinced that the Guai either works for additional reasons than theorized by Dr. St. Amand or that it works for an entirely different reason.

    I do think manay failures are due to improper dose and hidden sals. Where people have access to medical professionals and support groups trained in the protocol, there is a very high rate of success.

    Of course, nothing works for all of us, unfortunately.

    Love, Mikie
  6. mom4three

    mom4three New Member

    I am so sorry If I sounded that way. I just think it did not work for me. I do think it does work for some people. I was having a very hard day that day. I had a great lady for support when I was on guai. And believe me their was no hidden guai lol. I can help any ladies with sal free make up because I spent many hours searching lol. I have a very severe case of FMS. According to all of my doctors. My poor girls. I truly wish it would have worked for me. But I could not stand the pain of not being on my medications any longer.

    Congrats to you guys. And I am really sorry if I sounded negative.

    Tracy
  7. Mikie

    Mikie Moderator

    One needn't give up one's pain meds while on the Guai unless they contain sals, such as in Aspirin. I continued the Morphine for the first year of the treatment. It can take a good year before one can go off pain meds. The Guai Protocol is a slow process.

    I'm sorry if it didn't work for you.

    Love, Mikie
  8. Mikie

    Mikie Moderator

  9. Mikie

    Mikie Moderator

  10. mom4three

    mom4three New Member

    Thank you for bumping for me. I have been having a really hard time.

    Well when I started the protocal I went on the Drs. Website. I posted on their site to get advice and help from Claudia and all of them. They were they ones that instructed me that I must not take my medications because that is the only way I would be able to find the correct dosage for me and the only way I would be able to know when the guai was working or if there was salicylite breakthrough. So they gave me instructions on how to wean off all the medications. And that is why I did not take them.
  11. Mikie

    Mikie Moderator

    If it means one cannot stay on the Guai Protocol, it would make more sense to more slowly wean off of them. I was taking the Morphine for a year and still knew that the treatment was working. The Guai just doesn't work fast enough for someone in a lot of pain to go off the meds unless done very slowly. I understand their rationale but in more severe cases of pain, it just doesn't seem very practical. It's a shame to have to give up the Guai treatment. If it were me, I would continue the Guai and the pain meds and just see what happens. If the Guai is working, the need for the pain meds should decrease. Of course doing it this way makes finding the correct dose harder, but the majority of people cycle on 300 mgs. twice a day. It also means one must be certain one is sal free.

    Love, Mikie
  12. dani78xo

    dani78xo New Member


    i'm pretty new to the FM diagnosis as well,
    but in terms of suggestions,
    she shouldn't push herself too hard.
    it's really easy to want to just overexert yourself one day
    in the hopes that you'll miraculously get better the next day,
    but she'll only pay for it later.

    finding a support group is a good idea,
    though alot of people might be alot older than her.
    i don't know anyone around here my age who has it,
    and unfortunately the closest supportgroup is an hour and a half away.

    i haven't personally been able to get on FMs good side as of yet,
    but i'm sure with the proper diet and medicine and therapy
    it will eventually subside enough.

    also, for me at least, it was really easy to just want to close up and not talk to anyone.
    i lost alot of my friends that way, and it only ended up adding to my depression.
    it helps to have friends over even if she's feeling a little under the weather.

    basically just do the best she can.
    it's really stressful being a teen with FM,
    but i guess there's better hope for us to get better and go into remission.

    as for you guys supporting her,
    just be easy on her =].
    don't push her too far, especially in terms of school...
    i know i have alot of stress for that,
    because i'm not able to go alot.
    there'll be days when she just doesn't want to do anything.
    just be there for her =].


    as for the Guai protocol,
    i haven't tried it myself but i'm VERY tempted to,
    if the treatment i'm on now doesn't work.
    from what i've heard, you have to eliminate salicytates {sp?}
    from your everyday life {like face soaps, shampoos, etc. i think}
    its an ingredient in alot of cold medicine,
    but for some reason it reverses alot of the effects of FM.
    i've heard it takes months to work, though,
    and it makes you more sick at first, instead of better.

    it's a good thing to think about,
    but i'm waiting until summer to try it,
    when i don't have to worry about school.

    hope you guys find a good treatment =].
    -danielle
  13. Dee50

    Dee50 New Member

    I'm taking 400 x 2 daily of Guai. I'm very happy I started. I've had lots of support here at this site. I read the posts from Dr. StAmand's web site too. Some of the posts there are to hard for me to follow, but I'll keep reading them because I'm learning.lol

    My very thick and heavy "Brain Fog" is lifting and I'm so thankful. I'm able to drive again what a blessing that is. I also take Immun Plex undenatured whey protein and have for a few months but the brain fog didn't get better till I added the Guai Protocol.

    The brain fog was at the top of my list to stop. I seem the have found the answer for me. If Mikie had not keep talking about this Guai Protocol I would have NEVER tried it. I'm very thankful to her for talking about all it is doing for her. I'm also thankful for all of Jude and Smiffy's posts on this Protocol.

    From what I understand there is a small % of people that do not get worse on this reversal protocol. I think that's interesting. The HG diet would be very hard for me to do. I'm learning more everyday. Did you know that you can lose weight on this Guai Protocol without the HG diet, some people do.

    I'm thinking about starting a Guai group here in my town so many people with FM and no groups that I can find. I've got to get that FM Lady t-shirt love it.lol

    The Doctor's new book is well worth buying I'm glad I did. If this protocol did not work in the past for anyone I would say "Try it again and give it 6 months or longer". You have to kick the sals out of your life or the Guai Protocol will not work.
    Take care,
    Dee50


    [This Message was Edited on 03/15/2006]
  14. mom4three

    mom4three New Member

    If I had you as a person to help support me I would have gone on witht he treatment. But I had the other group which turned out to not be veru supportive and di not give helpful information at all. After speaking with you it seems as if they were just waiting for me to fail. The made it very clear that the pain I was feeling was telling me that it was working and it was very important to not take medication.
    It was very unbearable.
  15. Mikie

    Mikie Moderator

    If one can tolerate the pain, it's one thing, but when the pain is that bad, you can't just give up the meds and wait a year for the Guai to kick in. It's possible to tell that the Guai is working, even when on pain meds. It makes it more difficult, but not impossible. It's really too bad that this happened.

    It was very obvious to me that I was in a Guai flare within a short time. Also, my Fibro Fog went away. My urine had the Guai smell and I could see the crystals and bubbles in it. These are all signs the Guai is working. I just took my pain meds for the Guai flare and kept on going.

    Maybe one day you will feel like giving it another try. I wouldn't blame you if you didn't, though. Thanks for sharing this as it brought up an important problem that others may face and at least, now they know that one needn't give up pain meds to succeed.

    Love, Mikie
  16. Mikie

    Mikie Moderator

    I'm so glad the F Fog is improving. Before I took the Guai, it was like navigating through thick pea soup fog just to walk from one end of my condo to the other. When the fog lifted, it make a huge difference in how I felt. I still had memory problems, dyslexia, and other cognitive problems, but the thick pea soup fog was gone. I never expected that to happen so fast. It was like a bonus.

    Love, Mikie
  17. Mikie

    Mikie Moderator

    I think you are wise to wait til summer to try this. Between now and then, you could read the book and get yourself sal free.

    If you are too concerned about the Guai flares, which shouldn't be worse than regular FMS flares, start out more slowly than the protocol and build up. The Guai needn't make one sick.

    Love, Mikie
  18. Dee50

    Dee50 New Member

    "It was very obvious to me that I was in a Guai flare within a short time. Also, my Fibro Fog went away. My urine had the Guai smell and I could see the crystals and bubbles in it. These are all signs the Guai is working. I just took my pain meds for the Guai flare and kept on going." Mikie said.

    This is exactly what is happening to me, even with my cold I can see that the Guai is working. I do take pain meds. I'm so so thankful my brain is still there!lol Mikie where you on the whey when you started the Guai?
    Take care,
    Dee50

  19. Jana1

    Jana1 New Member

    I am feeling better than I have in months. I think this is a mental thing or something because I have only been on Guai for 8 days.

    I am taking a chance writing this cause I might wake up tomorow and be in a physical mess.

    I THINK I am sal free. I have checked everything I Hae and changed a lot of brands. The first 5 days I slept most of the time. The last three days, I haven't had to take as much of my pain meds that I have used for a year.

    I am able to walk without shuffling and alternate feet going up and down stairs.

    I started with 600 twice a day Guai, and switched to 1200 twice a day as the book said to do if after the first week you dont feel worse.

    I can't fathom what is happening with me as nothing seems to fit the cases in the book. As I said, tomorrow might be different, but wow! have I enjoyed the last three days.

    Jana
    [This Message was Edited on 03/15/2006]
  20. Mikie

    Mikie Moderator

    I'm sooooo happy for you both.

    Dee I didn't find Dr. Cheney's article on the whey until quite a while after I had started the Guai. In fact, the Guai and Klonopin are about the first things I tried besides Morphine.

    Jana, one person posted here that she never had a flare but simply felt better and better. Not everyone fits the textbook case like Dee and I. You are right; this may not last but at least, it is a glimpse into what is possible. Even if it doesn't last, you will feel this good again. I had whole days in the beginning where I almost felt normal. I got a lot done during those days :) If it were me, I would go to 900 mgs twice a day just to ease up and not get slammed if an increase produces a flare. The 600 mgs. twice a day is two times the dose which usually causes cycling. Good luck.

    Love, Mikie