"So Just Give me the Basics..."
(Quoted Excerpts, used with permission, from What Your Doctor May NOT Tell You about Fibromyalgia by Dr. R. Paul St. Amand and Claudia Craig Marek. Everything else is from The Pain Behind the Mask, Chapter 5, Copyright © 2006 Carol Stous Hetler. All rights reserved)
What is fibromyalgia?
A disease that was nameless until the early 1980’s when it was coined, fibromyalgia. Fibromyalgia (FM) is a Greek word meaning pain in the muscles. Fibromyalgia is prevalent in all ethnic groups and in all parts of the world. It affects both women and men—the majority being women; a ratio to men about five to one. As a result, most people think of fibromyalgia as a “woman’s disease” This simply is not true. Men suffer the miseries of this disease the same as women. It’s estimated that five percent of the adult population suffers from this disease, although Dr. St. Amand believes the actual rate is higher.
Dr. St. Amand concludes, from observing fibromyalgia in his forty years of treating thousands of patients from all over the world with this disease, that fibromyalgia is a cyclic and progressive illness that presents with multiple symptoms. These symptoms may last only a few days in the early stages but then become present on a daily basis, better known as flares in the world of fibromyalgia. Fibromyalgia eventually affects multiple areas and bodily systems until a person simply cycles from bad to worse.
Dr. St. Amand defines it as, “…a complex and chronic disease that causes widespread pain and profound fatigue-accompanied by a range of symptoms that make simple, everyday tasks, daunting, difficult and sometimes even impossible."
What causes fibromyalgia?
Because of his hands-on examination of fibromyalgics and more than four decades of research, Dr. St. Amand now has a working theory on what causes fibromyalgia, its behavior and how to ‘cure’ it.
Dr. St. Amand believes that fibromyalgics have inherited a malfunction that is predominately in the kidneys, which allows excess accumulation of some normal body constituent. The kidneys are the body's natural filtration system. Blood carrying metabolic debris, including phosphate, circulates through the kidneys. As blood passes through the kidneys and by the cells lining the walls of the renal tubules, the cells must make a decision as to which debris they will get rid of and which they will keep for redistribution to meet the needs of the body.
Dr. St. Amand’s theory postulates, “The kidneys badly direct the fate of inorganic phosphate...Our genetic malfunction causes fibromyalgia because it doesn’t let the tap open fully, phosphate leaks out, but only sluggishly. There may be some considerable daily variability, but that back-damming effect will eventually send uneliminated (sic) phosphate for distribution throughout the body. It’s only a matter of susceptibility of certain tissues that determines which ones best scoop up excess phosphate.”
Normal, healthy kidneys will open wider the spigot, so to speak, whenever something accumulates to excess in the bloodstream. For those with this faulty renal excretion, the spigot doesn’t open, and the body retains the phosphate compound. As a result, phosphate that’s unable to escape through the urine, now accumulates in the bloodstream. Because the body must keep the bloodstream in perfect balance, it has a limit on the amount it will allow. It will not allow excess of anything, including phosphate.
How does the body take care of the accumulated phosphate?
There is no choice; the tissues must accept some of it back. “In some predetermined pecking order, certain tissues must help clear the blood by accepting some phosphate excess. Bones are the most adept at tucking it in, but eventually they become saturated and refuse to soak up anymore. Muscles and sinews must help, and they do. That’s how inorganic phosphate gets driven back into cells all over the body.”
The accumulated phosphates within the cells eventually begin to slow down the mitochondrial generators that sit inside each cell by interrupting their normal ability to produce adenosine triphosphate (ATP). The cell’s inability to produce sufficient energy like a properly functioning cell, will sooner or later, affect the whole body. An over-all feeling of fatigue and the many fibromyalgia-like symptoms that present are evidence of this catastrophic disruption in the cell’s normal energy production.
Dr. St. Amand believes that the shortage of ATP will continue to explain fibromyalgia. “The inability to generate adequate energy in affected tissues explains the spectrum of the illness. “The widespread metabolic mayhem can all be explained by inadequate sources of ATP.” “Only restoration of normal ATP production can give patients back their normal mental and physical energy.”
To better understand the ruinous disruption that takes place in cells, please refer to the 2006 revised edition of Dr. St. Amand’s book What Your Doctor May Not Tell You About Fibromyalgia, pages 30-38.
The upheaval the excess phosphate has caused in the many cells is invisible to doctors and to others; tests don’t reveal the real problem. Only the fibromyalgic knows that something has gone terribly wrong in their body. If a fibromyalgic doesn’t address the kidney malfunction, this widespread domino effect will eventually leave the body in an energy-deprived state, and the pervasive symptoms of fibromyalgia will gradually present.
Who gets fibromyalgia?
Dr. St. Amand’s working theory is that fibromyalgia is an inherited problem due to a genetic defect. He believes there is multiple gene involvement and every fibromyalgic is born with a unique combination. This is why fibromyalgics all present so differently. If both parents have FM, they will show symptoms earlier in life than another who may only have one or two genes involved.
When does the condition start?
“We believe that fibromyalgia is caused by an excess of a specific biochemical substance that enters individual and inter-connected cells. This process begins at birth and accrues until the body’s safety nets are overstretched and become porous. The time from birth until sickness varies with the genetics of each individual.”
What treatments are there for fibromyalgia?
To answer that, one would have to know which FM symptom needs addressing. Fibromyalgia presents with so many different symptoms that a person can easily try various treatments in an attempt to tackle each one. The symptom that a person struggles with the most, will probably decide which treatment they find the most helpful.
For example, the person with muscle pain or chronic headaches may say that aquatic exercise, chiropractic or trigger point therapy, or acupuncture helped them. Someone with chronic fatigue may find that certain supplements help, such as those high in potassium or detoxifiers. A person who suffers with IBS may find that colon cleanses or amino acids that help digest protein help immensely. Others may find that exercise helps depression and blood circulation, which in turn, helps constipation and other FM problems they may have. Various beverages and juices have become popular in treating fibromyalgia symptoms. The list could go on, not to mention all the drugs that address FM symptoms such as anti-inflammatory medicine, anti-depressants, analgesics, muscle relaxants, sleep modifiers and anti-anxiety medicine.
The specialist the fibromyalgic visits will also determine the treatment. As Dr. St. Amand put it, “...fibromyalgia worms its way through individuals with enough nuances to eventually lend cohesiveness to a certain number of complaints. These characteristics make patients seek help from whatever specialist seems best suited to handle the most pressing problem. Specialists, by definition, work in somewhat limited spheres, and thus get easily trapped into a focus, which forces them to view only symptoms germane to their field. Because it’s not their job to expand their perspective to include the whole patient, they end up treating just a few symptoms as if they were the entire disease.”
Why use guaifenesin as a treatment?
Dr. St. Amand postulates guaifenesin is the best and safest way to help the kidneys perform their normal function of filtering. This in turn facilitates the body to rid itself of the accumulated metabolic debris, especially the inorganic phosphate, clearing out bogged down cells and returning them to their normal function of producing sufficient energy. (See ‘What causes fibromyalgia?’)
Guaifenesin addresses the actual disturbances caused by defective genes, not merely its symptoms. Until 1995, he used uricosuric medications, primarily Anturane and Benemid, but with the discovery that guaifenesin was more effective and had no side effects he began using only guaifenesin. He has treated thousands of patients including many three-generation families. The resultant facts coming out of the Fibromyalgia Treatment Center in California, prove that the protocol is upwards of 90 percent effective in restoring patients to normal living.
Many other treatments can help the symptoms of fibromyalgia, as already mentioned, but most are costly and each treatment is merely fixing, and at times only short-term, one of the many problems that will stem from this underlying, silent disease. Eventually, with either age, illness, or a stressful event, FM symptoms will present or conditions that were “fixed” will re-appear. Dr. St. Amand has found that guaifenesin works best at getting rid of the various complaints by reversing the disease.
What is guaifenesin?
“In 1530, in its original form, a tree bark extract called guaiacum, was used to treat rheumatism, and then later it was used to treat gout. Today, we are more familiar with it as an ingredient in our cold preparations.”
I have fibromyalgia and I'm handling it just fine! Why do I need to start the guaifenesin protocol?
Some fibromyalgia symptoms are plain to see while others, though not at all conspicuous, will eventually become apparent. In other words, it is very likely that, at some point, your fibromyalgia will worsen. The longer a fibromyalgic waits to start the protocol, the more cells will have accumulated phosphates and the longer it will take to clear them. Also the longer a fibromyalgic waits, the more difficult the reversal process can become. Dr. St. Amand believes that he has good reason to conclude, through his work, that today’s fibromyalgia is tomorrow’s osteoarthritis.
Will guaifenesin cure fibromyalgia?
No, guaifenesin only allows the kidneys to function properly and eliminate the accumulated phosphate. It does not cure fibromyalgia. A person with FM will have to take guaifenesin the rest of their life if they don’t want phosphates to re-accumulate in the cells of their bones and tissues, causing FM symptoms to present once again.
How does guaifenesin reverse fibromyalgia?
Fibromyalgics have a problem with the kidneys getting rid of metabolic debris, especially phosphate. This problem starts with an enzyme in the kidney that may be slightly defective. The body is always seeking to maintain a balance, so what does it do when too much phosphate accumulates in the bloodstream? It begins to dump the excess into our cells, as described above, affecting the body’s energy production.
Guaifenesin is the silent ‘doorman’ who opens the floodgates in the kidneys, letting debris escape in a normal way. This clears the bloodstream, allowing accumulated phosphate that has backed-up into our cells, to now flow out by way of our bloodstream, maintaining the balance that our body continually works to have. Fibromyalgia gradually reverses as the body eliminates all the excess phosphate that’s been stored in the body.
What happens when a person ‘reverses’?
Reversing fibromyalgia begins when a fibromyalgic finds their proper genetic dose of guaifenesin, which triggers the FM reversal cycle. This cycling process has two elements: the body is either purging accumulated debris from cells and eliminating it from the body or resting from that process. In a nutshell, during the reversal process, the fibromyalgic is either in the purging part of the cycle or the resting side of the cycle.
What happens in the purging part of the cycle?
During purging, accumulated debris is being pulled out of cells in some part of the body because now the kidneys are able to expel it. This cleaning out process causes an increased intensity of fibromyalgia symptoms, the result of disease-causing, accumulated energy blockers (phosphate, calcium, etc.) being drawn out of the tissues. (See pages 52-54 of Dr. St. Amand’s book for a detailed explanation for the exacerbation of FM symptoms in the purging process.)
The intensity of fibromyalgia symptoms will repeatedly increase while debris is purged from cells and eliminated through the kidneys. The symptoms that intensify during the purging process will generally be those symptoms the fibromyalgic was dealing with, prior to the protocol. They can also be problems that resurface from the past, ones that have been forgotten, or fibromyalgia symptoms that have yet to be experienced.
This purging process that continually takes place in the various areas of the body has been coined, cycle/cycling, in the world of those on the guaifenesin treatment (Guaiers). When someone says, “I’m cycling,” this means the Guaier is in the purging part of their reversal cycle. Perhaps, this has happened because this is the side of the reversal cycle that is the most difficult, and therefore it’s discussed the most in support groups and on the GuaiGroup on-line list.
How long does purging last?
This varies with each individual and each area that is being purged. It can last for days, weeks and even months before a person experiences a rest from a purge.
What is a ‘rest’ period when we reverse?
This part of the reversal cycle takes place when all that can be done metabolically for that particular purging time has been accomplished. The purging has stopped so the intensity of fibromyalgia symptoms will decrease during this time and for some completely disappear. This rest from purging and eliminating debris can last for a few hours, days, or even weeks, depending on the amount of offending substances that’s being cycled out of cells and eliminated.
Is this reversal process painful?
For the majority, there’s some pain, but tolerable. For others, there’s little to no pain. Then there are those who find it quite painful. Dr. St. Amand’s explanation for the pain is, “When reversal begins, water has to reenter the ailing cells, wherever the cleaning out is about to start. That extra fluid causes swelling all over again, exerting more pressure on nerves to renew the message of pain.” For many the symptoms of fibromyalgia worsen until the kidneys catch up with the elimination of the debris. During the purging period, the person’s individual pain threshold will usually determine the perceived intensity of the reversing attack.
What fibromyalgics experience varies greatly since so much depends on individual pain thresholds and ability to cope. “For many the symptoms of fibromyalgia worsen until the kidneys catch up with the elimination of the debris. During the leaching period, the person’s individual pain threshold will usually determine the perceived intensity of the reversing attack.”
What does it mean to get ‘mapped’?
Dr. St. Amand determines a person’s genetic guaifenesin dose by their clearing progress. This is determined by mapping. This he does by checking areas of swelling (lumps and bumps) and then recording their size and density on a diagram of the body. Progress can be determined when these areas of swelling begin to disappear. The vastus lateralis and rectus femoris muscles of the left thigh are always the first areas to clear phosphate out of the tissues. These muscles will clear within a month on the correct guaifenesin dose, provided there's no salicylate blocking.
A massage therapist or other interested party can learn the mapping procedure (mapper) if taught by someone who knows and can give “hands-on” training.
What is a daily symptom journal?
The symptom journal is a tool that Guaiers use to log their symptoms as they progress through their reversal. The journal is especially helpful when they don’t have a mapper. Guaiers can determine all they need to know to reverse their fibromyalgia by keeping track of symptoms and chart how they feel. The answers to the following questions will guide them: Have my symptoms worsened? Have they diminished? Do I have new ones? Have some disappeared? Are my up days better than my days before guaifenesin? Are my bad days becoming less intense?
If entries indicate no worsening of symptoms or no progress, the Guaier will have to determine whether a salicylate is preventing (blocking) guaifenesin from doing its work of clearing debris from cells. In the beginning of the treatment, the first month of entries will show whether they have found their initial purging dose, or not.
What does it mean to ‘block’ the guaifenesin?
“Guaifenesin and other medications we’ve used for fibromyalgia have only one enemy, a chemical compound known as salicylate. This substance blocks the action at the kidney level, precisely where we need guaifenesin to do its work.” In other words, salicylates will prevent guaifenesin from opening the spigot in our kidneys, bringing our reversal to a complete stop.
What are salicylates?
“All plants produce it as a protective agent against bacteria. Today salicylates are easily made synthetically in laboratories, so salicylates exist both as natural and synthetic compounds. The best-known and most commonly used salicylate is good old aspirin.”
Why do salicylates block guaifenesin?
“There is a particular area in the kidneys where our older medications and now guaifenesin must be allowed to work unimpeded. Unfortunately, it’s precisely the same location where salicylates also attach to targeted cells: in renal tubes. These cells have surface areas that house thousands of receptors. It’s easy to visualize the process if you think of each receptor as a custom-made garage designed for use only by a certain specially shaped car. Each garage will allow parking only for cars that fit that perfectly. In the human body, every receptor on every cell is precision-made to accommodate only specific hormones or chemicals.
For any medication to succeed, it must somehow find and neatly fit into a garage, even though that space was designed for a natural molecule.” Once medications are correctly parked, cells under their influence will perform or not perform specific actions. Unfortunately, guaifenesin and salicylates are competitors for the same receptors, or garages, and the latter are a better fit and so get preferential parking. It takes very little salicylate to occupy the few available sites, and that leaves no place for the guaifenesin to make contact with the cells.” By leaving no place for the guaifenesin, the salicylates block the work of the guai.
How can I avoid salicylates?
A Guaier (a person on the guaifenesin protocol) can avoid salicylates by learning which ingredients contain salicylates and by reading all ingredient labels on the products, they buy. They must be most careful with products such as cosmetics, lotions, shampoos, etc, that go directly on the skin because this is the most effective way salicylates enter the body and then are widely distributed by the bloodstream.
Joining the on-line support group at http://peach.ease.lsoft.com/scripts/wa.exe?SUBED1=guaigroup&A=1 and searching the archives will help the Guaier become knowledgeable about salicylates.
These URLs will also help you, as a Guaier, become familiar with salicylates and where they hide… http://www.fibromyalgiatreatment.com/salfreeQuickRef.htm and http://www.fibromyalgiatreatment.com/listSalicylateFree.htm.
This URL will help you choose what products are salicylate-free… http://www.fibromyalgiatreatment.com/salfree.htm.
Can I eat foods with salicylates?
Dr. St. Amand does not impose any dietary restrictions on patients who only have fibromyalgia. If there is a dietary restriction, it’s for those who also have hypoglycemia.
However, on the guaifenesin protocol, Guaiers do need to avoid all herbs or tea supplements that have a medicinal effect on the body. They have a higher concentration of salicylates than the food the Guaier eats, which means when the guai comes in to park there will be too many occupied parking spaces. Guaiers must also be cautious about medications that have salicylates in the ingredients. Single chemicals that are extracted from plants, other than salicylate itself, are acceptable and will not block guaifenesin as in: alpha-hydroxy, fruit acid, or bromelain, etc. Do I have to watch my calcium and phosphate intake in my foods and supplements? No.
What is the HG diet?
Dr. St. Amand believes that if a person doesn't get better on his guaifenesin protocol, then they are either blocking the drug's efficiency with salicylates or the person has hypoglycemia. He believes that many fibromyalgics also suffer from hypoglycemia even though their glucose tests say different. He calls these people fibroglycemics.
For these patients, he has developed his hypoglycemia (HG) diet. Dr. St. Amand believes that if a person on the protocol is a fibroglycemic and isn't on his HG diet then "they will continue to feel terrible even after the medication has purged most of the fibromyalgia debris from their tissues."
Dr St. Amand believes that fibroglycemics are the sickest of his patients and that the HG diet is “not just a good idea, it is mandatory!" To better understand his concept of a fibroglycemic eating themselves out of their hypoglycemia, you will need to buy his book and study chapter 5 where he explains why this becomes such a huge metabolic chore for these people. His HG diet is also laid out in this chapter. For further one-on-one help with your HG diet join the on-line support group at http://peach.ease.lsoft.com/scripts/wa.exe?SUBED1=guaigroup&A=1
What is the most difficult aspect of this treatment?
“The most difficult aspect of the treatment is what the Guaier must go through during the reversal period. In the early cycling phases, we are desperate for our bodies to show even a few ‘good’ hours (a result of less accumulated debris in the cells thus allowing energy formation). Until this first glimmer of a healthy future (mine took three months of cycling), the Guaier can only hope that they've been told the truth and that the guaifenesin will work for them as it has for so many others.”
Why would anyone attempt a treatment that causes so much pain?
Fibromyalgics who are on the guaifenesin protocol believe it’s the answer to their fibromyalgia. Having read hundreds of testimonials from people who’ve reversed their FM with this treatment and are once again living normal lives free of pain, fatigue and depression, they start the treatment with hope that this will also be their testimony in the future.
When they have that one ‘good’ (energetic) moment, they have hope. When that one moment turns into a full day of energy, then a week, then a month and then many months, they never turn back and never even think of quitting. Although the fibromyalgic may continue to live with pain while cycling, they are able to bear it knowing that it’s pain with a purpose; they’re seeing more energy, diminishing depression and a zest for life that they haven’t had in a very long time.
How long does it take to start feeling normal again?
This varies with each individual. As a rule, most people find that after six months of cycling on the guaifenesin, they begin to see more and more energy again. Age, health, diet, and whether the work of the guaifenesin was blocked with salicylates, will all influence the time it takes each person to feel normal again.
Dr. St. Amand’s calculation time for reversing the disease is a MINIMUM of one year for every two months of treatment if we do everything right and never block. Luckily, there are but a few people who clear that slowly, most much faster.
(Read my guaifenesin protocol journal at My Journey. This will give you an idea how long it took me, on my own with no local professional help, to feel somewhat normal again).
How long do I have to take guaifenesin?
As already stated, Dr. St. Amand’s protocol is not a cure for fibromyalgia. Guaifenesin simply assists the kidneys to perform effectively and sufficiently. When the guai is stopped, FM will slowly accumulate in the cells again. “Guaifensin only works while you’re using it. The genetic defect that causes the illness is unchanged by taking medication, so your symptoms will return if you stop taking it. The illness probably won’t reappear all at once or overnight, but come it will!
How do I get started?
You’ve decided that you want to start on the guaifenesin protocol and wonder how you should get started. You’ve been to your doctor and tests that have been run to exclude other diseases have come back negative. Now, I would urge you to buy the January 2006, revised and updated version of, What Your Doctor May Not Tell You about Fibromyalgia by Dr. R. Paul St. Amand and Claudia Craig Marek.
For quick reference you can also get the needed information from The Fibromyalgia Treatment Center at: www.fibromyalgiatreatment.com. Go to the FAQ page and click on Guaifenesin FAQ and then 'What is the proper way to find my correct guaifenesin dosage?'
If you are serious about getting help, then read their book from cover to cover. Take charge of your fibromyalgia and get started today. Don't put off the beginning of a new life for you! Doing the protocol correctly to find your genetic dose is the first step to managing your complete reversal. Only those with fibromyalgia will experience an exacerbation of their FM symptoms when they take guaifenesin, as long as you are free of salicylates. You will need to follow Dr. St. Amand’s directions EXACTLY as he advises to find your proper dose.
Where do I find a doctor to help me get started?
If you live in California and are within driving distance of Marina del Rey, then you are blessed! You are one of the lucky ones who can make an appointment with the Guru of the guaifenesin treatment, Dr. St. Amand! Call for an appointment at (310)-577-7510 or fax to (310)- 821-0664.
Otherwise, you can go to http://www.fibromyalgiatreatment.com/doctors.htm to check and see if there's a doctor in your area who's familiar with the treatment or one who uses it with his patients. You will also find the location of mappers on this website. If there's no Guai doctor within reach, then know that you can do this on your own by reading Dr. St. Amand's book and following his instructions exactly as he instructs. If you don't have a mapper within driving distance, you can still accomplish your goal of reversing your FMS by keeping the Symptom Journal.
By joining the free on-line 'GuaiGroup' list at: http://peach.ease.lsoft.com/scripts/wa.exe?SUBED1=guaigroup&A=1, you will get all the support and instruction you need. If they are unable to answer your questions, they will refer your questions to Dr. St. Amand and then get back with you. I did not have a doctor, other than Dr. St. Amand’s on-line help, nor did I have a mapper to help me through this. I know from experience that it can be done without a local doctor or mapper. I kept a Symptom Journal and joined the on-line support group.
Having a doctor's support and knowledge, from the experience he has gained working with other fibromyalgics on the Guai treatment, is a heartfelt wish that many of us fibromyalgics have.
For a better understanding of fibromyalgia and a more comprehensive answer to these questions, I would suggest that you buy Dr. St. Amand and Claudia Craig Marek's book that I've been referring to:
Revised and Updated, January 2006 What Your Doctor May NOT Tell You about Fibromyalgia
To help you understand how the disease may be affecting you and your family and to learn how to cope with it and the guaifenesin treatment buy:
If you wish to contact Carol: chetler@satx.rr.com
Copyright © 2005 Carol Stous Hetler. All rights reserved.