Subject: Answer to R.C. (Long)
From: email@example.com (FMSDoc)
Two answers will have been posted in response to J.'s note. One has already been done by my nurse, another by a Ph.D. (ecological sciences) and one will be posted by me tomorrow.
I thought this might be appropriate for you however. You have errors in your quote or your source is in error. Witness:
Yours: "Why did Dr. Bennett conduct the study of guaifenesin?"
(2)..."patient demand for this drug"
(3)..."the frequent claims on the Internet and elsewhere that it was a cure for FMS."
(4)..."for the benefit of patients who were dumping conventional therapies to try it..."
ALL OF THESE PHRASES ARE WRONG!
In 1992 I was invited to attend the rheumatology weekly conference at the Oregon Center for Health Sciences by Doctor Bennett. I made my presentation on my experience with uricosuric agents ("Anturane", "Benemid", "Robinul") from my many years of treating a condition that had finally been named, "fibromyalgia".
After that meeting I then sat with Doctor Bennett for about forty-five minutes in his office, alone with him and later we were joined by Sharon Clark, Ph.D. in exercise physiology. We agreed to do a double blind study on one of the above agents if funds could be raised. They were quickly forthcoming through the generosity of Mr. Jack Scott and his wife.
By the time the study planning had been completed (I was the consultant and allowed to choose a group of tests I had wanted) I had had about six or seven months experience with guaifenesin as a potentially better drug, both for lack of toxicity and for its apparent superior effectiveness, compared to the above medications. When Doctor Bennett asked me which drug I wanted, I selected guaifenesin.
Prior to beginning the project, Doctor Clark and the head nurse who would oversee the project came to Los Angeles and spent a day in my office for the purposes of my showing them how I mapped and described treatment to my patients. They left with that one day's experience and the admonition to exclude patients with hypoglycemia (40% of our female fibromyalgics).
In the third month of the project, I became aware of blockade of two patients (reversal of improvements on our maps) by Ben Gay and Myoflex. I warned Doctor Bennett of this in February of 1994. In May 1994, we noted reversal on our maps by patients ingesting herbal medicinal products (concentration of the best part of plants -- leaves and roots especially). PLANTS MAKE SALICYLATES (Science: November 19, 1994). I promptly warned Doctor Bennett of this too.
It was not until six weeks after the project was completed (June 1995) that I had the sickening finding of a major reversal (80% or so) in one patient who suddenly added "Clinique Basic Formula with sunscreen" to her face on a repetitive basis. That product still contains the salicylate that was added to it at some date unknown to me. I immediately recognized that salicylates might have been added to many products . My "women's army" quickly confirmed my worse suspicions. Salicylates have been added to multiple topical products over the past four or five years. Worse was yet to come. We became aware of blockade by aloe, ginseng and other plant derivatives in mid-September 1995 -- three months after the study was completed.
It is only recently that we have become aware of the rapid changes manufacturers make in their products. We have learned of blockade by castor, camphor, almond, grape seed oils, etc. When my new patients are sent home to search their cosmetic and topical treasures, they will usually find about 75% of their wares are salicylate-bearing. We now make maps on every visit to more quickly spot deleterious changes.
This is how things happened. We made our first maps beginning in July 1993, so that I cannot tell you of previous experience with topical applications.
Therefore, in response to your statement, "Why did Doctor Bennett conduct the study of guaifenesin?" -- the above is why. There was no popular demand since no one used the drug for fibromyalgia but me, and in only a small number of patients at the onset of the project. There was no patient demand for guaifenesin. There were no frequent claims on the Internet and elsewhere that it was a cure for FMS, since we were not on the Internet in those days and I did not even have a computer in my office -- we had a central billing company hired for that single purpose. Thus, there were no patients dumping conventional treatment and there still are not. We do not take away patients' medications when they come to us. We seek to get them better, and then and only then do they begin their own weaning process away from the brain-directed medications and various addictive ones.
I have sent Doctor Bennett abstracts of papers showing the salicylate dermal absorption. I have several more. Why, once more, do people think Ben Gay, et al, work? The entire study was fraught with error from topical salicylates (my fault and ignorance) and from not culling out the hypoglycemics due to their many, inter-playing and confounding symptoms with fibromyalgia.
The last point I must make, and I will post it more scientifically as soon as I have time, is that you are thinking in very large macroscopic terms. Cells usually do not work in all-or-nothing-at-all sequences. Very tiny, localized nerve or hormonal sparks trigger action by a degree of stimulation worthy of the moments' needs. The intracellular response is also tiny, localized, and in blushes of ions (especially calcium) that tell a certain area to do what is needed. This is a well-known fact in biochemistry and physiology. Cells are little organs that respond only to need, and ideally not to excess. The gross measurements you cite as proof that we are wrong, are indeed exactly very gross attempts to read small areas of action -- I too have read the papers and continue to predict that the answer to fibromyalgia will only come from actual, intracellular measurements, such as have been done by Bengstton and Hendrickson in Sweden. Our technical paper is posted at a web site (I deliberately have none) constructed by an activist for FM. Access data for this has been on the Internet for months.
You can readily understand that I can hardly spare the time to make similarly lengthy responses to each critic. I am making those that I am about to post with the caveat, I will not do so again except to scientists who understand what I am saying. I have my teaching duties at Harbor-UCLA and cannot give Internet courses in basic sciences. I will continue to respond to individual patients who seek help, and especially to physicians who wish the same.
I am aware this will not satisfy you, and probably none of those who believe the failure a final punctuation mark for guaifenesin. I cannot change the study, nor correct my own lack of knowledge. This latter deficit will certainly annoy me again during few, remaining years.
R. Paul St. Amand, M.D.
Posted on alt.med.fibromyalgia by Nancy
Article found on the FibromeetWeb Site.
There also is an updated version of this
article in Issue 4 of CISRA's
Synergy Health Newsletter (http://members.aol.com/SynergyHN), by Joyce Waterhouse, Ph.D.
firstname.lastname@example.org or SynergyHN@aol.com.
Any comments? Send them to Bill Jackson at email@example.com
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