Discussion in 'Fibromyalgia Main Forum' started by vacrow, Dec 12, 2005.

  1. vacrow

    vacrow New Member

    Thanks for all those who responded on the guai issue. I think I know you Mikie from a past support group.

    I was on the guai protocol for almost 3 years. At the time I was working and could not work when I was in a bad flare, so I got off of it.

    I can tell a big difference since I went off of it about 2 years ago. I have tried everything since then including going to the FFC(which I cannot afford) and have not gotten good results.

    I have been praying about this as my fatigue, insomnia, and depression and pain are getting worse. All I do now is cry when someone looks at me and I am on Wellbutrin for depression. The last two weeks have been rough on me.

    Soooooo, back to getting rid of the Sals and back on guai and rereading the book again.

    This protocol does work, it just takes time. I have undone everything that I reversed, and now must start over.

  2. Smiffy

    Smiffy Member

    You are supposed to feel tolerably worse Geogia, that's how you find your dose.
  3. Mikie

    Mikie Moderator

    One can decrease the dose. There is a maintenance dose at which we neither get worse nor better. If we want to reverse our symptoms, we need to take more than the maintenance dose. If we do that, we will flare. The good news is that as time goes on, the Guai flares decrease in severity.

    It has to get worse before it gets better. I see no way around that, unfortunately.

    There are OTC meds we can take during the day if we need to work and ease the pain. I found ibuprophen to be most effective.

    Please do not give up on the Guai. Even if one only takes the maintenance dose, at least, one is not getting worse.

    Love, Mikie
  4. Mikie

    Mikie Moderator

    Stopping the Guai can also cause flares. Sometimes, we just need to decrease the dose. As I've said often, we are all different and have to find our own optimum dose on meds. Good luck.

    Love, Mikie
  5. Mikie

    Mikie Moderator

    Is that it takes 2-3 months on the Guai at the cycle dose for every year one has been ill. When the tender points are no longer tender and no new ones are cropping up, it is usually safe to go to the maintenance dose. For most of us, that is 600 mgs. a day. It takes 800 mgs. for me to keep my tender points from starting to return.

    I may try going back to 1200 mgs. just to see whether I can squeeze a bit more benefit out of the Guai. If increasing the dose doesn't cause a flare, I will know that the 800 mgs. is where I should be.

    Because I also have CFIDS, it can be difficult to determine whether there are any FMS residual symptoms or whether it's the CFIDS causing problems.

    Love, Mikie
  6. Smiffy

    Smiffy Member

    My post above looks daft because the one before it was removed.

    Good luck to all on this.
  7. Mikie

    Mikie Moderator

    Mine also looks daft. Oh well...

    Love, Mikie

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