Was on guai yrs back but couldn't hack it need encouragement

Discussion in 'Fibromyalgia Main Forum' started by artseyone, Jul 28, 2006.

  1. artseyone

    artseyone New Member

    O.K. Ya'll who are on the guai protocol I need to know if you really are getting better and how long it's been for some of you...
    With all the meds I take now that seemed a simpler approach..I had a dr in Louisiana who mapped me and treated me w/this protocol..

    I couldn't hack it I felt sooooooooooooooooo awful...
    Sitting in the Epsom salt baths I'd almost give myself burns not many could stand..I have a high threshold for pain..All I took was tylenol and went salycitate free...Made all the adjustments..

    Please.......someone out there let me know how you manage?
    I've has fms for 20yrs and have tried all the snake oil treatments,,you know how desperated we get.
    Waiting for answers,
  2. angellwolffe

    angellwolffe New Member

    they say it doesn't work for everyone. But i've been only been on it for a little over a month and i have seen its affects start. Dont give up hope. here's what its done for me so far. The fog has died down. the cognative problems i don't know how to address, i still get my words jumbled up. i started on a low dose and went up until my pains were getting worse, then i stayed there. I now take 400 mg every 4 hours. I sleep better and some of the pains are lessening. Now i have been suffering for at least 20 years, when i was a kid they said it was just the scoliosis.i've still got a long way to go but i can see a slight glimmer ahead. my doctor disaproves of it but i don't listen to them anymore anyhow. maybe try again. If you do we are with you.

  3. Smiffy

    Smiffy Member

    As your symptoms of reverse cycling were unbearable, your dose was almost certainly too high.

    If you want to give it another go, read Dr St Amand's new edition of 'What your doctor may not tell you about fibromyalgia' carefully to understand how to find your correct dose. You start at a low dose & slowly build up to the one that makes your symptoms TOLERABLY worse. It's very individual. You can take sal free pain relief.

    Like you, I've had this DD severely for 20 years. I've been on the protocol for a year & am making slow but steady progress. I started off virtually bedbound & still have another three or four years of reversing to do. I intend to stay on the Guai treatment for life.
  4. Mikie

    Mikie Moderator

    The cycling from taking the Guai should not be so hard that one cannot bear it. If it is, the dose is almost certainly too high. It is best to start out slowly and increase if one needs to.

    I can look back and see early symptoms even as a toddler. I have been sick all my life but considered myself healthy until 1990 when a mycoplasma infection brought on my illnesses full blown. Following an auto accident six years ago, the FMS was so bad that I was bedridden most of the time and on Morphine for pain.

    I've been on the Guai for five years and consider myself reversed. I still struggle with CFIDS, but it is easier to treat now that I don't have to worry about the FMS.

    The Fibro Fog almost immediately cleared up when I started the Guai. I cycled on the recommended dose of 300 mgs. twice a day and my reversal has been almost textbook. Thing is that it takes time for the Guai to work. I continued to take the Morphine when I needed it for about the first year on the Guai. After that, OTC meds would suffice. I now seldom take anything. Even though I consider myself reversed, if I get really sick or injure myself, I will have some pain, especially in the areas of old tender spots. I can no longer feel the spots and they are no longer tender.

    I don't know where I would be today if I hadn't started the Guai five years ago. Almost certainly, I would be on increasingly higher doses of Morphine and probably still bedridden.

    I am very thankful that the Guai worked so well for me and I tell about it here to give hope and encouragement to others who are willing to make the commitment to this treatment. It takes not only commitment, but also patience. The process is slow, but at some point in the treatment, one will feel so much better that one will want to keep at it. It didn't take five years for me to start to feel the benefits. Good luck to all.

    Love, Mikie
  5. Smiffy

    Smiffy Member

    bumping for Artseyone
  6. Dee50

    Dee50 New Member

    Hi Artseyone, I've been on Guai since march 8 of this year. I spent 7 plus months being bedridden the year before and I've been fighting CF(EBV)/FM for my whole life. CF since my mono at 16. The FM got very bad after a whiplash about 14 years ago wish I knew about Guai then!
    I'm better in many ways. The mental fog is less, sinus is way better, the wax is flowing out of my ears instead of getting stuck and a ear doctor having to dig it out. I do take pain meds as the overall pain is much worse on guai. I know the guai is working and I will be on it for life. I think the first year on guai is going to be the worst for me. And I know that when the guai starts working on my neck it's going to be tough but I'm a few years away from that as the neck is the last to clear.
    I'm glad i'm on the guai protocol and I'm up and running and have a life now.
    Love, Dee
  7. artseyone

    artseyone New Member

    With such success, I may revisit guai..
    The dr who treated me met Dr Armand and she used his protocol...
    My dr also had it herself, so she knew first hand what it's like..We used to email, but I've lost her address..

    She only allowed me Tylenol for pain..I didn't know I'd be able to take my pain meds.
    All she had me do when I hurt so badly was take a hot soak in an Epsom salt bath..
  8. bigmh

    bigmh New Member

    Dear Artsyone...I am away from home, but read your message with great empathy. I have had FMS for 11 years as a result of a bad fall, and understand your comment about desperation!!

    I knew about guai several years ago, and tried it without getting rid of the salicylates...and it didn't work. After reading about it again, I have been on it since March 9. I still have a lot of pain, but not much more with the guai. I take methadone and baclofen (a muscle relaxanat) for the pain.

    I have seen some signs of progress!! A couple of hours of feeling better, and then realizing that the times of feeling better are getting a little longer. Mikie and others have cautioned us to watch carefully for the signs of reversal as they can be fleeting.

    Guai is the only treatment that I have found where the symptoms are reversed and people are getting BETTER!! Our little guai ladies group here is such a support, and it is truly a blessing that we are living in this time of internet support groups. I feel really blessed to know each and every person here.

    As others have cautioned, go slow on increasing your dose. It should be tolerable and it's OK to take pain meds as long as they are sal-free. I wish you the best. We would love to have you join us. Just put "guai ladies" in your post name, and we'll chime in.

    Best of luck to you...blessings, Ann

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