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Established in October 1997 as a non-profit enterprise the original, international Guai-Support Network offers access to 'self-help' health education and support. Discussion revolves around all renditions of the guaifenesin treatment for FMS, CFS, CFIDS, ME, IBS, EDS, IC, MCS, NMH, RLS, VV, MVP, MPS under the GUAI topic.  Many other health issues such as HG, IR, reflux, Thyroid, Toxicity & reference to other theories & treatments for FMS/Cfids are welcome without a topic keyword.  Members have access to extensive archives.

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How Guai Works on FMS
Dr R. Paul St Amand (for the Guai-Support Network)

Guaifenesin is 100% absorbed within about one to two hours after ingestion. Its action in fibromyalgia is merely one that permits kidneys to rid themselves of excessively-accumulated, normal body constituents. The drug has no listed side-effects and is marketed expressly to help the body clear itself of mucus.  The benefits to fibromyalgia are merely those we have found.

I postulate that the offending lesions are made that way because of an excess accumulation of phosphates. Lesser excesses of oxalates and calcium are also on the suspect list. Some genetic defect causes us to retain phosphates to a level that eventually blocks the formation of energy in cells (ATP). The body seems to know the safest places to allow these deposits for protection of more vital organs.

When substances rise too high in the body, fluid pours into that site trying to dilute the offender to equal levels in adjacent tissues. It is excess water accumulation, under pressure, that causes pain, lumps/bumps we feel in FM. In fact, 90 to 95% of the swelling is merely water. This water dilutes the ions to levels sufficient to permit cell survival but at the cost of normal function.

Calcium is also drawn in to accompany phosphate. Excess calcium, free in cellular fluid stimulates it to over-perform pushing its normal function to excess. Unfortunately the cell cannot quit trying as long as calcium is sitting in the wrong place, out of its storage bin. Think of all the cells that are affected in FM; each is under the same duress.

Fibromyalgia as I see it, is due to continuously overworking cells that deplete themselves of ATP, the currency of energy, which is already in short supply. I think excess phosphate entering mitochondria blocks ATP formation to begin the entire process.

During reversal, more fluid enters the cell to finish the incompleted dilution. This causes further swelling and temporary malfunction such as in the brain or muscle, tendon and ligament spasms yielding pain. As a major area is being purged and this fluid draws out of cells along with the excess phosphate, oxalates and calcium, the flow into the bloodstream is such as to exceed the kidney's ability to purge. This allows the symptoms of reversal to last a few days until the kidneys catch up, cleanse this batch and end the cycle.

At this point, a "rest period" is possible allowing for better hours, days or weeks. The process with guaifenesin reversal is probably continuing but at a subliminal level until the next, perceptible crescendo begins. Tiny spurts of undesired accumulations become a flow and, again, another debilitating cycle is underway. Each such cycle means one less in steps nearer to good health.

This is but a partial and simplistic explanation of far more complex biochemistry and ionic moves that are quite likely occurring in cells. Most important however is to remember that fibromyalgia is induced by an abnormality that ultimately strikes at the very heart of basic energy formation. This explains all of the symptoms and findings.

We have merely stumbled into a treatment. Our theory is only an attempt to explain what we see and feel.

Dr R. Paul St Amand

                                     -----------oooooo------------

Some members feel they may never get completely well.

Dear Guais, Dr St Amand has responded to my request that he address you all regarding some of your concerns (which I summarized for him)1.

"Hi Tesa. You posed some of the concerns expressed by some members. The summation of their e-mails is helpful to simplify things for me.

1. Some members feel they may never get completely well.
That is possible if some damage has occurred especially to joints. We have not seen permanent lesions elsewhere. However, many of our patients have had auto or other accidents that have caused some soft tissue damage and tears that will have healed with scar tissue. Under usage, such areas will continue to cause pains.

2. "The protocol not working the way they understood it would the cycles too long or no good days at all and yet they are sure they are on the right dose and not blocking."
This is where the greatest errors exist despite the above statements. I see

many people from all over the Country who make the same statement. They come in having been on guaifenesin (personal physician wrote prescription), sometimes for several months. They continue to show the telltale left thigh spasms that attest to either insufficient dosage or blocking. Most often, after a session with my staff on salicylate sources, they return home only to find they did indeed block. I have two of my own patients who have been under treatment for a few years who reversed benefits in the past one month. One thought that picking a few dandelions off her lawn "and a few weeds" for only 10-15 minutes would not matter and, she added, "one facial a week though I know it has the wrong ingredients, wouldn't matter." The other was great she wore canvas gloves in her garden doing that type of work. However, in preparing rose arrangements for her large home (large rose garden as well), she pulled thorns off the roses for about 15-20 minutes barehanded twice per week. Both were inadvertently blocked and their maps showed it.

Thus when someone says "I'm sure I'm not blocking" I fear we remain skeptical. Another just came back from Europe three weeks ago (saw her yesterday). She ran out of her lotions and dentifrice and, for two months, used what was provided overseas and in her hotel rooms. She too when into a tailspin.

3. The worse scenario is inadequate dosage.
We have consistently urged patients to get mapped by someone with good hands. This may add to costs but I think this is too serious an illness to pull up short of the measures needed to confirm the adequacy of treatment. There is a huge persistence of trying to wing this thing by themselves. We see many patients who come in, read our book, take guaifenesin BEFORE they see us. We are then in the position of trying to decipher what they might have been like before treatment. Thus the dosage is not certain immediately until a subsequent visit. All of this could be obviated by having an initial mapping.

The left thigh should clear the first month if the dosage is correct and no blocking has taken place. we have stressed this repeatedly as we did in the book. I would think it easy for people to have the left outside and the front of that LEFT thigh mapped before starting treatment and one month later.

Even this does not guarantee that the dose will be sufficient to finish the job. The initial amount needed to clear the thigh but may not be quite sufficient to dig deeply into tendons and ligaments with any degree of speed. We have stressed that whenever a patient feels he or she has leveled off in clearing, first recheck products for sources of salicylates that have slipped in on replacement purchases. Next, increase the dosage by one tablet. If that makes one decidedly worse, there is no blocking and there is a choice return to the previous lower dosage if they cannot handle that much pain or stay at the higher level and go for a speeded reversal. We have even urged getting Robitussin (Plain) and take just one tsp. (100 mg. ) extra per day; tease up by another tsp. one week later just to find out what precise dosage they can handle though more symptoms are precipitated. Other patients are too high (frequent problem) for their needs and are purging too hard for what they can stand. We have urged following the protocol exactly. Once increased symptoms have occurred, wait a couple of months and wait for better hours or days. Since those good days are our goal, why raise higher until well down the line when it is easier to handle?

I don't know how anyone can be sure when they hurt if they are reversing benefits or the disease without a map. Raising the dosage is the only other way I know save waiting for whatever time that allows the progressive accumulation of better days.

4. Most of my patients do not know how long they have had the illness. They almost invariably state such as "five years." However, when I question closely beginning with growing pains, headaches of the teens, strange "tension neck and headaches" etc. I can pick up the presence of the illness for many more years. Most people focus on when they began to have steady, unrelenting albeit cycling symptoms. Thus, one's estimate of how long FM has been present is usually quite skewed.

5. Tendons seem the first hit with the exception of the left side of the neck (Sternomastoid muscle), left upper shoulder blade (before the right) in 96% of the children's maps we have just reviewed for the pediatric book. Thus these are among the first hit and will be among the last to leave. The left hip/thigh area was present in 75% of the kids--also a late reverser. The feet, top, sides and botom, right deltoid tendon more than left are also late clearers.

6. As to why pains are so intense at times even later in treatment. Think in terms of the size of the lesion being purged. The posterolateral hips are the largest especially the left. When those areas "feed" the system as they clear, huge amounts are sent to the bloodstream. The kidneys are slow in clearing debris or I don't think we would have our disease. Thus, the substances being cleared (we stick with phosphates), will recirculate in the bloodstream allowing the brain to pick up new deposits. In addition the other muscles and tissues will pcik up their fair share and produce aches and stiffness. Once the "feeder" has stopped doing so, the new, mini deposits seem to clear rapidly. All of this may take 2-3 weeks in any given cycle.

7. The speed of recovery is genetically determined. Some are certainly slower than others. I was one of those. Thus, there seems to be a fixation on "two months reverses one year of disease." This is certainly true for the vast majority of people. In fact, we think we are going faster now that we have caught mint in toothpaste--something that does not block everyone. Again however, let me stress, if anyone gets totally blocked by ANYTHING each of us, however responsive, is partially blocked by the same item. Many people block intermittently when they wear a different topical product one day and not the next. They purge deposits on their clean days and redeposit on the inadvertent dirty days. This certainly makes for prolonged and ineffective cycling.

I wish everyone including physicians would look at these diseases (FM, hypoglycemia, obesity, diabetes) as a spectrum. At one end are the severely affected patients but at the other end, only the very mildly affected. The same goes for people in their responsiveness to medication. Is it really surprising that some patients clear 90% within four or five months but others of us take years?

8. The disease began at birth.  
Bones tucked away phosphates until they cold tuck no more--genetically determined. When did other tissues pick up deposits that remained below an individual's pain threshold? Wimps (low pain threshold) go to doctors sooner--they experience far more pain than the athletic person who has a high pain tolerance. High pain threshold people accumulate more FM before they finally experience sufficient aching and pain to go to a doctor and then go through the waiting process, the delay to a diagnosis.

9. Without my having my hands on each and every member of the Group, I have no idea how each one is, how much disease lurks in the depths of their bodies (many we cannot get our hands on), how responsive is each one and how "clean" are they with all products?

Additionally, how active do they become when better days come? How persistent are they in continuing all their activities, exercise and work when they are still in the full throes of the illness? All of these things determine the usage of their faulty energy production. Activity uses energy--what we lack in FM. Each person afflicted with the illness continues to perform at some level--totally different from others.

People who are inactive have many fewer mitochondria per cell than active people. Remember, these are our power stations that make ATP, the currency of energy. Athletes may have as many as four times more of these than sedentary people. Are Group members rtying to walk as long as possible or do moderate exercise to their limited capacity? More power stations means more rapid clearing. Most people do not realize that one muscle fiber may have as many as 1000 mitochondria--there are many more than one per cell all over the body. How inactive has a person been all of their adult lives? All variables that do not allow generalizations.

Guaifenesin causes no damage. The deposits within cartilage many years ago may lead to osteoarthritis, cartilage erosions and tendon malfunction even after treatment with guaifenesin. The process was initiated too late to ward off the progression to tissue destruction.

Do not think in black and white. Each of us has had the illness for variable times and to various degrees. Each of us responds differently at our own genetic pace. Lacking a blood or other test, we are working in the abstract and each time I see a posting by a member, I am limited by these facts. I NEVER have a complete picture of that person's disease no matter how well they try to describe their personal condition. I am also terribly limited as you will be, Tesa, to read between the lines of posted material from untrained patients. Each one of the Group is doing his or her best to describe conditions. However, the vast majority are not trained medical personnel. They do not know the nerve distributions and the radiation of pain from an affected source. Each person has read material that is simply not true but is often added to their interpretation of their own situation.

Is all of this frustrating? Of course it is. We know we are not going to get everyone well because of misdiagnosis, poor compliance, poor monitoring etc. However, those whom we see here do well to what is certainly above a 95% level if they persist in their mappings, following our instructions and not simply quitting even when several months or a few years are required. Persistent improvement in the mapping however gradual is our key to success.

My parting thought if you are getting even somewhat better, seeing more good days off and on even in the face of some intense cycles (not all cycles are created equal), what choice do you have? Is there another treatment that works? You must persist however slow you respond, continue checking for salicylate sources, exercise as much as possible, do not allow hypoglycemia (even a mild carbohydrate intolerance) to persist, lose the weight you must by whatever means and control any other illness that has crept in.

I wish I could see all the slow responders and suspected non-responders. Failures are usually from within the physician or the patient. I can't make it planer than that."

R. Paul St. Amand, M.D.

1Subject: DOC: Understanding Fibromyalgia
Guai-Support Archives, October 16, 2000

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The information on this web site comes from many sources, including: Dr. R. Paul St. Amand, his assistant Claudia Marek, members past & present of the Guai-Support Group Mailing list and others consulted on various topics. It is not meant to be medical advice, but rather helpful hints on this journey. Please consult with your Health Care Professional.

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