Anyone not do well on guai?

Discussion in 'Fibromyalgia Main Forum' started by desertlass, Jan 26, 2007.

  1. desertlass

    desertlass New Member

    Not meaning to stir up a debate, but I didn't fare so well on this protocol. Please don't dogpile-- I have read the books by Dr. St. Armand and Dr. Penniston, did the diet, the sal-free, understand the theory, etc. I just want to know if there is someone else who didn't have success, because trust me, I read as many success stories as I could find beforehand, and all of the tricky issues.

    So, if you are doing well on it, or have gone into a reversal, then rock on! Blessings! Just trying to find someone else who may also fall into the 20% category of "not helped" but are too timid to come forward, like I have been until now.

    Thanks,
    Lisette
  2. Mikie

    Mikie Moderator

    I'm sorry you have not had success with the Guai. We have had people post here who, like you, did not benefit from it.

    Again, I'm sorry it hasn't worked for you.

    Love, Mikie
  3. desertlass

    desertlass New Member

    I have always been curious what happened to others. I agree with you on the "blame the victim" mentality that we have all suffered for too long regarding this illness from doctors, the early media stories and people in general. We don't need to be blaming each other on top of everything. If it's not salycilates in your shampoo, then it's hidden sugar feeding your yeast, or not enough Vitamin D or too much, or being on medications at all or not trying a medication for long enough. Maybe it's all of those things and more! We don't have crystal balls, and it's hard to know what to focus on at any given time, given all the various symptoms and stressors.

    Even though the whole guai experience has been over for me for a while (and that's not to say that I'll never try it again), I think this whole question came up for me because of a comment my sister-in-law made over the holidays. She told me that I have a "victim mentality" instead of a "survivor" mentality and that I give up too easily. So, one more thing I ended up getting blamed with-- a weak mental state. The disappointment I felt wasn't bad enough. Apparently, insults were necessary as well. :(

    It wouldn't have bothered me so much, except that I thought we were close, and it also confirms my suspicions about what some people still think about this illness. If we haven't cured ourselves by now, the problem must be us.

    Thanks again for letting me vent, and coming forward with your own stories and info. All the various success stories keep me hopeful that someday the answers for my own issues will come along, and it might be a unique combination that will just take more trial and effort to fine tune.

    May we all find our way out of this maze.
    To those who have found a way, enjoy and keep going forward!
    Lisette
  4. Mikie

    Mikie Moderator

    That is one of the frustrations in treating our illnesses. What works for one may not work for others. I do agree that the Guai is worth trying because if it does work, it can eventually reverse the pain and fatigue associated with FMS. I wish it did work for everyone.

    Please be a little patient with those who talk about hidden sals. They are not typically "blaming the victim." It's just that some are very sensitive to sals and there are a lot of places where one can be exposed to them. There are those who are sal free and still, the Guai just doesn't work for them. No one should be blaming those for whom the Guai didn't work. I think those for whom the Guai has worked just want it to work for others and want to help them identify any hidden sals which they may have missed.

    I do know that the rate of success goes way up when there are people who help with the mapping and with getting sal free. This treatment can be overwhelming and there is a lot of room for error, especially in the beginning. Still, there are those for whom it doesn't work. I am so sorry for anyone who has put so much effort into this treatment only to be disappointed.

    Love, Mikie
  5. Mini4Me

    Mini4Me New Member

    I have posted about this a few times. I too read the book by Dr. ST.Armand, followed the book to the letter, bought all new toilitries, etc., etc. and hung in there for 6 months. It just did not work for me. Yes, I am happy for and a bit jealous of those who've had success.

    I've had a lot of failures with these DD. But I've also had some successes, so I continue to press on and be open minded.
    Mini
  6. California31

    California31 New Member

    Saw St. Armand years ago in Marina del Rey offices...don't know that I remember the whole protocol....and don't know that the protocol is today what it was in 1992...(ish)....but did not notice a change in particular....it was a pain specialist who helped me the most.
    Also regarding the victim mentality...I think that when we press on and try to find whatever may help us regain balance...that that is hardly victim mentality. I do know that there have been times in my life when the victim "reality" has kicked in....(certainly not just about FM).....but as soon as I spot it, am aware of it ...I move on down the road.

    [This Message was Edited on 01/27/2007]
  7. lurkernomore

    lurkernomore New Member

    But your SIL, although I see here that you seem to have a good relationship, seems very hurtful in what she verbalized to you. Just another example of someone who doesn't get it and has already decided to pass judgement.

    I'm sorry, I know you did not ask for my opinion, but this upsets me.Because we keep on trying and you have gone to the extents that you have to get well and still, you have a victem mentality?

    I just don't see us that way and I refuse to. In my mind, we are all survivors and anyone who wishes to think otherwise, and especially to say it right to our face, clearly does not have a clue what we are up against here. We need more research and more public coverage before all these misconceptions will ever be cleared up.I am sorry you had to hear that from your own SIL. That had to hurt a little.
  8. nev

    nev New Member

    to say that it will help everyone. I believe dr amand says the guai slowly excretes phosphates from the kidneys, which at first causes the symptoms to flare up. Then as the kidneys are 'slowly' rid of these excess phosphates the body actually reverses the symptoms.

    So what I'm getting to is that each person may not benefit from this treatment as their phosphate level (and other things that are flushed) may need a different or added course of treatment. And some people I'm sure do not need phosphates flushed, but some other underlying problem in their medical haystack to weed through.

    Some day there will be a standard course of tests to rule out to find the cause. Rather than so many people suffering. Like first the Tier I tests (most common), next do the Tier II tests and so on. One day hopefully there will be a routine way of treating our neverending pains, fatigue, and discouraging doctor hopping.

    That's just my thoughts, every person is different as others stated above. With guai the side effects are almost nonexistent so it seems worth a try when nothing esles works. None of the heart warnings and stuff.

    I am contemplating starting the guai protocol, as I do not want to take pain meds, musc relaxers, and wake up meds forever. I have a list of 2 St Louis drs from dr amands website to check if my ins will cover the basic visits and stuff.

    Thank you for sharing your unsuccessful guai use. It is important for people to see the pros and cons before jumping in.