Bad news for Guai users

Discussion in 'Fibromyalgia Main Forum' started by Manwithfibro, Aug 5, 2003.

  1. Manwithfibro

    Manwithfibro New Member

    Speculation as to the mechanism whereby some of
    Dr. St. Amand's fibromyalgia patients experienced
    improvement while taking guaifenesin.

    Dr. Robert Bennett

    Professor Medicine

    Oregon Health Sciences University


    --------------------------------------------------------------------------------

    There is no doubt that many fibromyalgia patients have been helped by Dr. St. Amand. Thus it is instructive to consider why guaifenesin use was associated with a beneficial outcome in many fibromyalgia patients when used by Dr. St. Amand. This current study provides compelling evidence that guaifenesin has no beneficial action by itself in the treatment of fibromyalgia. Thus the real benefits reported by Dr. St. Amand, over many years, probably have an alternate explanation. This is most likely in the realm of a placebo response aided by powerful cognitive restructuring. Dr. St. Amand was very convinced that uricosuric drugs were of benefit. This was at a time when many fibromyalgia were told that "the problem was all in their head" and nothing could be done. Patients want to hear that they have a legitimate disease for which their is a cure. Dr. St. Amand provided this hope to numerous patients and backed it up by an infectious enthusiasm and a pleasant engaging personality. Gradually many patients started to experience "good days" (as all do at some time) and attributed these to the effects of guaifenesin. This was reinforced by Dr. St. Amand's caveat that worsening (a self fulfilling prophecy in fibromyalgia patients) would precede the promised improvement. The arrival of the promised improvement, with its renewed sense of optimism, would lead many individuals to attempt vocational and avocational experiences that they had given up as being too daunting. Inevitably many patients found that they were indeed more functional than they had thought and took this as a further sign that guaifenesin was all that had been promised. This sequence of events would be a classical example of cognitive changes leading to increased self efficacy.

    A simple definition of self-efficacy is the enhanced sense of control that derives from a perceived ability to manage symptoms. Interestingly, it is the perception and not the actual capability that determines enhanced self-efficacy and resulting positive behaviors. Four techniques for altering beliefs about self capabilities that can enhance self-efficacy have been described

    1. Social persuasion -- health-care professional and peer pressure that persuades people that they have the capability to be more functional. Mastery experiences -- actually performing a previously off-limits activity. Modeling -- observing someone who is similarly afflicted being successful in performing the desired activity.


    2. Physiological feedback. This is basically "listening to one's body" by monitoring pain, fatigue, anxiety levels, etc., as a way of optimizing the timing of the new activities.


    3. Although self-efficacy enhancement is an exercise in positive thinking, it is the element of "mastery learning" that is the most powerful technique --nothing succeeds like success. In other words, success in performing a function, that was previously off-limits, promotes confidence in repeating that activity and moving on to new activities. success of a few encouraging others. Repetition and mastery of new behaviors using the feedback from small successes, as well as observing successes in one's peers, seem to be critical features in promoting self-efficacy.

    All these ingredients were present in Dr. St. Amand's approach to treating fibromyalgia patients. Indeed he often used testimonials from "recovered patients" to encourage patients to persevere with the prescribed treatment regimen. In this way Dr. St. Amand has unknowingly used guaifenesin as a powerful focus in a program of cognitive behavioral therapy, in which his empathy, enthusiasm and charisma were the real instruments in effecting a beneficial change.
  2. EZBRUZR

    EZBRUZR New Member

    SO,if one Believes the Guai is working,let them think that,right? .........eZ
  3. klutzo

    klutzo New Member

    Because Dr. Devin Starlanyl, whom I greatly admire, swears by it, I took 2400 mgs. Guai daily for 8 months and followed the inconvenient protocol exactly with no results, but I know there are several folks here who think it has saved them. Hoever, if they used any other protocols at the same time, I don't see how they can possibly know which thing they tried did the trick and which did not.
    I am concerned about this, as some of what I have read, esp. by Mark London, implies that Guai is not the innocuous drug people think it is, and should not just be taken for the heck of it, just in case it might work. It was grandfathered in for safety purposes, and has not been tested for it's long-term effects.
    The pro-Guai people will probably protest that Dr. Bennett is still trying to defend the very flawed study he did on Guai,which may be true. In the interest of fairness, Dr. St. Amand's whole reputation rests on the Guai working, so he would never be able to admit he was wrong and still earn a living. Who do we believe?
    I sure as heck don't know!
    Klutzo
  4. beckster

    beckster New Member

    does not even merit mentioning except that probably by far MOST guai users have never even seen Dr. St. Amand (and his "empathy, enthusiasm, and charisma") and probably never will.
  5. iconracr

    iconracr New Member

    At this point who cares. If it works
  6. elaine_p

    elaine_p New Member

    I'd been going to post a reply asking for the thoughts of people who'd actually been on the treatment, since I haven't tried it yet. And I'd been going to say it may be a placebo effect for SOME of the patients.... Then I noticed that's exactly what it says at the very top: "some". And, like EZ said, who cares why it works if it works. And like madwolf said, it's an old article. So I hope people don't get really angry when they read it.
  7. Mikie

    Mikie Moderator

    Well, here we go again. This old flawed study rears its ugly head every once in a while when someone digs it up. It really gets so tiresome having to expalin over and over that this study was so fatally flawed as to be worthless. A lot was learned from the study because at the time the study was done, the effect of salicylates and dosage was not known.

    I don't even think enough women finished the study to make it statistically reliable. In any case, it is a disservice to present this info because it is so skewed as to not be helpful for someone trying to decided whether to try the Guai treatment.

    I appreciate that most people do not understand this unless they have studied the book and understand something about primary research and study controls. This is nothing personal about you, Manwithfibro, as I'm sure you think you are helping, but this study should not be used for reliable info on Guai.

    The Guai does not work for everyone, just like everything else we try, but it has worked wonders for many of us. I urge anyone who is gathering info on the Guai to dismiss this study as too flawed to rely on.

    BTW, Klutzo, I'm sorry the Guai did not work for you. I am using other protocols, but it is very easy for me to know that the Guai is working because if it gets blocked, or I quit taking it, the pain returns and the tender points start to become tender again.

    Love, Mikie
  8. COOKIEMONSTER

    COOKIEMONSTER New Member

    I recently purchased the book, "What your doctor may not tell you about Fibromyalgia" by De. Amand and I find it facinating. I have tried all kinds of pain medication but I have always had some sort of reaction to them.

    I was scheduled to see my Rhuemy last Friday and he prescibed Guaifenesin 600 mg, to be taken 3 times a day, which Dr. Amand recommends. The part that I don't understand is the part I read in the book that talks about salicylates and the changes that I will have to make in order for the Guai to take effect.

    Since you have been on this for sometime, can you provide some guidance or list as to what type of things I will have to elimate and where I can purchase these items? I believe I am only on chapter 4 of the book, but what I've read makes sense.

    Did you go through the changes of having "real bad" flares as the Guia took effect for the first three weeks or so, as the books states?

    Does this Guia really aleviate your pain?

    Thanks a bunch!
    Hugs,
    Cookiemonster

  9. Mikie

    Mikie Moderator

    If I understand what your doc told you, your dose is 1800 mgs. a day. That is waaaaaay too much to start out on and may cause too painful of a Guai flare. As you may have noticed in Dr. St. Amand's book, the initial dose should be 600 mgs. a day, 300 in the morning and 300 at night. It is OK to cut the 600 mg. tablets in half.

    Stay on the 600 mgs a day for a couple of weeks. If no Guai flare appears, add another 300 mgs. in the morning and try that for another two weeks. If that isn't enough, add another 300 mgs. at night. If by this time, there is no Guai flare, I would suspect there are some sals in your regimen and would look at everything for sals. Dosing is a tricky thing, but most people do flare at the initial 600 mgs. You can always increase the dose later to speed things up, but you do not want the Guai flare from hell from taking too much right off the bat. I have increased to 2400 mgs and when I went from 1200 to 1800 mgs., I had the Guai flare from hell and I would hate to see that happen to you.

    Before you start taking the Guai, it is important to get the sals out of your supplements and personal care items. There is a list of the 1,000 most common botanicals in supplements and skin lotion, deodorant, etc. You must get very good at reading labels. The soap and shampoo are not as critical as lotions because the soap and shampoo are rinsed out. I have not found any toothpaste without sals except for the children's and I use either Barbie or Blues Clues. You can eat most anything, except cut out the carbs and don't eat anything with mint in it. Herbal teas are OK sparingly but again, don't drink anything with mint.

    You can find sal-free websites which list products without sals, but you still have to read labels as manufacturers change their formulas frequently. A rule of thumb is that the cheaper the product, the less chance of its having botanicals. I have not found any solid deodorants which are sal free. Most contain castor oil, as do many lipsticks. I now use the clear gel deodorant, but it isn't as effective at the odor part.

    You may notice a different smell to your perspiration and urine and this is normal. When the kidneys start removing the debris, you may be able to see it in your urine. I can look like baby powder on the surface or crystals which will sink to the bottom of the bowl if left to sit. You may also see more tarter on your teeth and it is really important to remove it. It flakes right off. I have a dental instrument with which I remove the tarter from between my bottom front teeth.

    Reread the book before you start. There's just too much info to get from one read through. I had to read it three times.

    A Guai buddy is a good thing to have. Sky and I started our treatment at the same time and it was a great comfort to me. Caring is also starting the Guai protocol, so you might see if the two of you can buddy up. Good luck to you.

    Love, Mikie
  10. Mikie

    Mikie Moderator

    As you can guess from my response, this has come up over and over and over again. I am the first to admit that it doesn't work for everyone, what does? I just have a problem with using this study as scientific info because of the flaws.

    Anyone considering this treatment will just have to try for him or herself. My feeling is, what have we got to lose? For people like me, it has been a Godsend. I hope it will be the same for everyone else who tries it.

    Love, Mikie
  11. mea

    mea New Member

    Dr Robert Bennent is not retired. He just did a conference here awhile back. Mary A.
  12. Manwithfibro

    Manwithfibro New Member

    Was that the urine output etc did not show any phosphate increase. Why is that?
  13. Mikie

    Mikie Moderator

    The Guai wasn't working due to sals and too small a dose in the study.

    This is the second time you have brought up the Guai protocol in a negative manner. I know that some time back, you were not happy about the results you were getting. Are you doing any better on the Guai? It does take time, patience, and the ability to tweak the dose.

    I just have to wonder about an agenda when someone posts material which he knows will be controversial and which has been posted before. You keep looking for people who have been helped and those of us who have been have responded to you. If it is not working for you, I am sorry, but it has been very helpful to others here.

    Love, Mikie

    Love, Mikie
  14. COOKIEMONSTER

    COOKIEMONSTER New Member

    Thanks for the advice. I'm surprised that my rhuemy did not forwarn me that I might possibly go into a serious flare after taking this med. Nor did he instruct me on what I should and should not make part of my meal/diet for this to be effective. Never once did he mention that "salys" word, can't spell it right now, but you know which one. So how is this supposed to work if your given instructions?

    I will start out by cutting the tablet in half for a couple of weeks and keep everyone posted.
  15. Mikie

    Mikie Moderator

    Just follow the instructions in the book. You may need to reread the book. Most docs haven't a clue as to how the Guai works, the appropriate dose, or about removing the sals before starting on the protocol.

    Failure is almost guaranteed if one does not understand and follow the protocol layed out in the book.

    Good luck to you.

    Love, Mikie
  16. TNhayley

    TNhayley New Member

    I take 1200 mgs guai before bed. I've quit taking it before and felt worse. That was proof enough for me at the time.

    Mark London's paper was very good I thought. It raises questions that are important. And it makes you wonder ... maybe guai works in ways other that what Dr. St. Amand theorizes. Mr. London talks of it's possible effects on the CNS, analgesic effects and anticoagulant effects. These guai effects could all impact our individual reactions to the drug.

    So, I keep taking it ... thankful that it is helping me in "some" way. Hugs,
    Hayley
  17. Mikie

    Mikie Moderator

    I have had the same thoughts as you since reading that material. There may just be a lot more to what is going on with the Guai treatment than phosphate debris. However it works, for many of us, it does work. It would be nice to know why, but not necessary. Results are the most important thing to me; however, if we were to find out why it works, it might lead to a cure. Until then, the Guai is the next-best thing.

    Love, Mikie
  18. TNhayley

    TNhayley New Member

    Yes! Ans it is the anticoagulant effect that has me most intrigued, especially as I've read posts by Sujay and others on the subject. I would love to see more research on guai ... and not just to prove or disprove the phosphate theory, but to fully explore why this drug works for some of us ... like you said. Warmest regards,
    Hayley
  19. idiotsinc

    idiotsinc New Member

    A little Apocalyps Now 'Redux here for the movie buffs in the audience. Surprised Dr. St. Amand (or any FMS org) still hasn't done another study on guai (to replace the "flawed" study). He says he's been raising funds for it for a few years now. There's also a study form England on guai and FMS and how guai is used as a painkiller in animals, especially horses. Must admit I'm a born skeptic (some would say boring skeptic) about most "cures" and would like to see proof. That's my 2 cents. Time to head "upriver".

    Bob
  20. Mikie

    Mikie Moderator

    We've been through all this before. No one, least of all Dr. St. Amand has claimed this to be a cure.

    If you want to wait for proof of any treatment for our illnesses, you will have a long wait as there is no cure. In the meantime, many of us are willing to try different things and keep those which work for us.

    Love, Mikie