Guai site is unprofessional - I am disappointed

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Mar 1, 2003.

  1. klutzo

    klutzo New Member

    For those of you on Guai:
    Claudia, who answers all the questions you have on the Guaidoc site, has always been helpful to those of us who are taking it, but apparently that is only as long as you have no criticism, no matter how kindly it's offered.
    I made the horrible mistake of writing to Claudia and asking her why a very common substance, guar gum, was listed on both the salycilate free list and on the most common salycilates list. I asked her which list it should be on, since it cannot be both, so that I would know if I should avoid it or not. She never answered. So, I waited a month, then asked again. I never said anything nasty, and all I did was respectfully ask for a clarification. Again, she has ignored me completely, and the guar gum, which is in many, many products, is still on both lists!
    I also want to warn you not to trust their lists of OK makeup products. You still have to take your magnifying glass to the store and read each and every label, because they do not keep the lists up to date. I found this out the hard way.
    IMO, when the main proponants of a theory have a site that is this mis-handled, and when they won't even acknowledge an error, let alone correct it, it casts doubt on the whole theory. How are we supposed to effect the absoultely tight control over salycilates in our lives that they insist on, when the reference lists can't be counted on? This makes it only too easy for them to insist that any failure to get well is due to us mishandling the salycilates, and not to the Guai. Very convenient.
    I am being super strict about salycilates, and I have another two months to go in my experiment. I am controlling all other elements, so that any effects are from the Guai. I really like the theory behind using Guai, since it explains the build-up of symptoms over a lifetime that I believe I have had, and it explains why mostly women have it, but I have read Dr. Bennett's rebuttal to the theory, and chemically that makes sense too.
    Just wanted to warn you not to trust those lists!
    Klutzo
  2. Mikie

    Mikie Moderator

    Bennet's criticism, which he bases on the Oregon study, is worthless because the study itself was too flawed to be of any benefit. He is aware of this but yet he continues to use the study as his basis of criticism. He is an expert in his own right, so I fail to understand why he is so obsessed with discrediting Dr. St. Amand.

    I agree with you about the website and Claudia. Trying to use the message board is so horribly convoluted that I gave up after a very nice Moderator, named Gwen, tried her darndest to try to help me. Claudia has always been very prompt in answering my questions, but she sent a very terse answer to my opinion that the website should stop recommending that people with FMS donate blood. She said that no scientific proof exists that FMS is contageous through blood donations. If she stopped to think about it, there is no scientific proof that the Guai protocol works either, but I didn't point this out to her (not easy for a wise ass like me). I did mention that stealth infections are being found more and more in people with FMS and that right now it isn't known to be safe to donate. Better to err on the side of safety. I told her it is perfectly OK to simply say, "We don't know," when asked if it is safe to donate. I never heard from her again.

    As far as the sal-free list goes, it is next to impossible to keep such lists updated. I still read labels for ingredients and I keep my book with me when I do it. Unlike many, I can tolerate a few sals, but if I get too many, the Guai will be blocked. I am so far along in the treatment and on such a high dose (2400 mgs.) that I think I can deviate a little more than someone just starting out.

    Like everything else in life, take what you can from their website, leave the rest and don't let it rile you. Stress isn't good for us. BTW, Sky and I have done beautifully on the treatment; we started two days apart and are about to celebrate two years on the protocol in mid-May.

    Love, Mikie
  3. BonBons

    BonBons New Member

    Hi Klutz - I was just thinking of starting on the guai protocol; a poster here had some extra. I am currently being "tested" for fibro, but really believe my issues are more chronic fatigue and KNOW I have chronic pain syndrome. The gaui is so costly and strict that I am really weighing the options. I agree that asking questions is intelligent and would really avoid people who take that as a challenge. However, I find that so often anymore. What the hell is going on with people anymore? Do they want us all to be sheep? (A vent today, had the same problem with another vendor). BonBons
  4. Jude

    Jude New Member

    Klutzo, I emailed Claudia about a supplement question that I had and got no response the first time. I emailed again with more specifics and was told that they didn't know the answer but it was better not to chance it since I was just starting the protocol. Since I've been on the protocol for almost a year I've had time to do some experimenting and for me the CoQ10 did not block. I also asked a question about about whether the guai was causing a physical response that I was having at the time. She emailed me back and said that it might or might not be. In my experience if they don't know the answer they have said so.

    Jude
  5. Dayle

    Dayle New Member

    using guia so what do I care? I just don't use many products it's not necessary. Bonbons, what do you mean expensive? It costs me less than $10 canadian a month. FLUDAN here in Canada sells guia in bulk & I make my own caps. You can get the info you need on the web. Hope this helps. Love D
    [This Message was Edited on 03/01/2003]
  6. klutzo

    klutzo New Member

    I'm glad I'm not the only one being snubbed by Claudia...misery loves company! (Just kidding)
    I believe the reason Dr. Bennett sticks by his belief,is that the expected substance that should be in the urine if the drug was doing what Dr. Amand said it should was not there. It was my understanding from reading his rebuttal, that this substance would not be affected by salycilates being present or not, so no matter what the dose, or how many sals were present, this substance should have been there. I'm sorry I can't remember the name of the substance (fog at 3:22 am....can't sleep again).
    I agree with everyone who posted that if it is working for you, who cares what anyone says.
    However, how can we be diligent about checking lists, when the same thing is on both lists, and Guar gum is in just about everything out there? It just makes it unnecessarily difficult.
    Hugs,
    Klutzo
  7. Mikie

    Mikie Moderator

    Just try to avoid the guar gum if you can and see whether the Guai is working for you. I believe that the more Guai one takes, the less the sals are able to block it. There is some tea in my makeup, but I wear a lot of skin care products under the makeup, so I don't believe a lot in the makeup gets through. It is listed way at the bottom of the list of ingredients, so I doubt there is much in it anyway.

    I absolutely have to wear sport sunscreen on my face, hands, neck, and chest when I go out in the sun. I look at it this way, if it blocks the Guai, it will only block it for 24 hours and I can live with that, but I can't live with sun damage or skin cancer. It's amazing all the pre-cancerous lesions that the Obagi skin care products have brought to the surface and eliminated. My younger daughter is having to have hers frozen.

    BTW, someone posted an excellent article here about Guai. It proposed that the Guai does work, but not for the reasons that Dr. St. A theorizes. This may be why Bennet didn't get the chemical results he was looking for.

    Love, Mikie
  8. idiotsinc

    idiotsinc New Member

    Unfortunately for the "Guaidoc" Dr Bennett is backed by a little thing called "medical science". I'm particularly bothered by St Armand's "Research Foundation". He's the one who says he's putting money from his books etc to do more research to prove that Bennett's was wrong (which a previous post made sound like Bennett agrees that it was flawed which he doesn't). Haven't seen it yet. Plus the board of directors of his "Foundation" doesn't any doctors on it besides the good doctor himself, unless that's changed recently. Not something you'd find on most reputable medical foudations. Think the term Peer Review comes into play here too. Of course I've always been more than a little skeptical.
  9. Mikie

    Mikie Moderator

    I never said Bennett agreed the study was flawed; I said he is aware of it. One would have to be extremely ignorant to not recognize the flaws in the study, which Bennett is not.

    There will always be people like you who demand absolute scientific proof and controlled studies in order to be satisfied, and there is nothing wrong with that. This is how science has always worked and is the mainstay of scientific progress.

    There are others of us who are more open minded regarding treatment options and are willing to try some of those options if the risks are minimal or outweighed by the potential benefits. Scientific proof doesn't matter as much to us as results. My results, and the results of many others, have been simply amazing. It would be interesting to me to find out why it works, but it's not absolutely necessary.

    I now take Guai instead of Morphine. I could still be sitting here in pain and on opiods waiting for the scientific proof, but I prefer the empirical approach. It's not for everyone and obviously not for you, but then, we are all different and make our own decisions on our treatment options. Neither of us is right and neither of us is wrong.

    As I mentioned above, someone posted a very interesting article on the Guai which opens the possibility that the Guai works but not for the original reasons that Dr. St. Amand believes it works.

    Love, Mikie