Fibromyalgia Support Group

This is a good reminder for those of use out there. Even the new members.

I personally take guifenesin I don't follow the protocol with the sacasilly something or other stuff to eliminate out of my daily regimen. I take it when I'm tired. And this explanation below helps share why I get boosts of energy from it. It apparently works like ATP for us.

For those who want to follow the strict protocol...just google Guifenesin Protocol for Fibromyalgia. And you can read up on it.

Below is what I got from ProHealth on Guif.
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What is the Guifenesin Protocol for Fibromyalgia patients?

Guaifenesin is also used in the very popular Guaifenesin Protocol for symptoms of Fibromyalgia, conceived by R. Paul St. Amand, MD, Assistant Clinical Professor of Medicine in Endocrinology at UCLA.

Though highly demanding and still considered experimental, the Protocol has been adopted by many FM patients, owing to widespread anecdotal descriptions of quality-of-life benefits. Nevertheless, note that Guaifenesin has not been approved by the FDA for this application and should be used as such only with the approval and supervision of a medical doctor familiar with the patient and Protocol.

What is the Protocol's underlying theory?
Dr. St. Amand explains this in his book written with Claudia Marek, What Your Doctor May Not Tell You About Fibromyalgia, and their article on Fibromyalgia symptoms, diagnosis, and the Guaifenesin Protocol. The theory is that:

· Excess inorganic phosphate compounds accumulate within the cells of some people rather than being excreted normally, possibly owing to a genetic defect involving a missing enzyme or kidney dysfunction.

· It is known that excess phosphate in the cells' mitochondria impedes their formation of adenosine triphosphate (ATP), the body's energy source - and that muscle pain after exercise is linked with an inorganic phosphate increase. Also, researchers have reported a 20 percent average reduction in the level of ATP in muscle biopsies taken from people with FM, notes self-described Guaifenesin Protocol beneficiary Devin Starlanyl in her book, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual.

· When excess phosphate builds up in the cells, excess calcium – the main buffer for phosphate – builds up too. Excess calcium in the cells tends to stiffen the body's tissues.

· A method of palpating muscles, tendons, and ligaments that Dr. St. Amand has described allows a physician to "map" or assess the extent of lesions in the tissues of FM patients, thought to be "contracted cells forming a spastic area caused by an excess of calcium."

· A carefully planned, monitored regime of guaifenesin extract supplementation may help the body eliminate the excess calcium and phosphate compounds, supporting improvement of FM symptoms over time in some individuals.

Dr. St. Amand has reported increases of 60 percent in phosphate excretion and 30 percent in calcium excretion.

What does the Guaifenesin Protocol involve?

Basically, it includes:
· Adjusting or "titrating" the guaifenesin dosage to the individual's needs, based on response over time.

· Strict avoidance of the salicylates in aspirin and other similar pain-relief products, plus a long list of personal care products including plant derivatives such as aloe or mint that are applied to and absorbed through the skin; and many plant extracts taken by mouth. These can completely block the action of the guaifenesin. Salicylate-containing foods are not a problem, as the digestive process neutralizes their effect.

· And strict adherence to a low carbohydrate diet, if the individual is hypoglycemic.

The Protocol also commonly delivers a significant physical impact in the early weeks, including a worsening of the individual's worst FM symptoms, and frequently headaches, burning on urination, and/or strong-smelling perspiration and urine. These are not considered side effects, but rather "the signs and symptoms of the toxins and wastes being released by the guaifenesin" - and therefore an indication that the Protocol is working.

So far the Guaifenesin Protocol has not been demonstrated effective in a controlled clinical trial, or approved by the FDA for support of Fibromyalgia symptoms. An early one-year trial completed at the University of Oregon in June 1995 by Dr. Robert Bennett concluded that "patients in the placebo group compared with patients in the guaifenesin group appeared to improve equally, a finding that suggested a placebo effect," says Dr. St. Amand. But "it is our belief that this study was flawed, due to our own lack of knowledge," he explains.

Though Dr. Bennett's patients were warned to avoid aspirin and aspirin-containing compounds, it wasn't until after the study was completed that Dr. St. Amand came to understand the immense number of personal products and ingested plant extracts that, even in minute quantities, could reverse patients' progress. Also, in reviewing the patients' wellness questionnaires, he noted that the study had not screened for hypoglycemic individuals, who therefore were not treated with the necessary diet. As a result, he contends, "the study was doomed for lack of knowledge of these pitfalls."

What is the status of research?
Currently, one of the stated goals of Dr. St. Amand's not-for-profit Fibromyalgia Treatment Center is to provide supporting research for the Guaifenesin Protocol.

He is now engaged in a three-year investigation with The City of Hope that involves a cohort of his FM patients (an "Immunological and Genetic Analysis of Autoinflammatory Genes in Fibromyalgia"). By mid-2008 the research had identified abnormal elevations in a cluster of inflammatory cytokines that appear highly predictive of Fibromyalgia, two of which drop to normal in patients taking guaifenesin.(2) And in November 2008 Dr. St. Amand issued a call to patients he has diagnosed with FM, to widen the sample of DNA used in the investigation.

In the meantime, the scores of physicians who employ the Guaifenesin Protocol – as well as many of the individuals, like Devin Starlanyl, who have adopted it – provide personal testimonials indicating that this regime supported significant improvements in their Fibromyalgia symptoms.
Posted on 11/20/09, 11:11 am