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ABOUT THE FIBROMYALGIA TREATMENT CENTER
(now closed)
AND THE GUAIFENESIN PROTOCOL
Dr. St. Amand is a 98 year old man who retired in March, 2020. He is an Associate Clinical Professor of Medicine in California and was the Director of the Fibromyalgia Treatment Centre in Marina del Rey, California. He had been working with fibromyalgia patients for over 60 years and has fibromyalgia himself. He also has passed this disease down to his three daughters. He hopes one day his theory will be proven and I believe one day it will be! The research that he was involved in can be read at: www.fibromyalgiatreatment.com under “research”.
Claudia Marek
Claudia Marek was Dr. St. Amand’s Medical Assistant and strongest advocate working together for 32 years. They were an incredible team helping thousands of people from around the world reverse the painful and debilitating effects of fibromyalgia. She has written and co-authored several books on fibromyalgia to help as many people as possible with this disease. Two hugely successful conferences were organized in Edmonton with Claudia and Dr. St. Amand in 2008 and 2012. Although the Fibromyalgia Treatment Center in now close, Claudia continues to help sufferers through the Facebook page, Dr. St. Amand’s Guaifenesin Support, which has over 3000 members. Her knowledge and commitment to the patients is truly admirable.
Dr. Paul St. Amand, MD
Dr. Paul St. Amand is an experienced endocrinologist and UCLA Harbor Associate Clinical Professor. He graduated from Tuffs University School of Medicine in Boston, Mass., in 1952. He completed his post graduate training, internship, and residency in Internal Medicine (UCLA) in 1956 from Los Angeles County Harbor General Hospital. While in private practice he taught at UCLA General Hospital in the department of Endocrinology as an Associate Clinical Professor. He was the director of the Fibromyalgia Treatment Center from 1998 until 2020 when he retired. He was involved in multiple medical organizations and has given numerous CME presentations, radio and television interviews. He has written many books and publications. He, along with his Medical Assistant, Claudia Marek, have improved the lives of thousands of fibromyalgia sufferers. He did not set out to be a leader but became one by the equality of his actions and the integrity of his intent. To us, they are our heroes.
This is Dr. St. Amand’s Theory
Basically, this is a multi-genetic, progressive, cellular disease in which we don’t excrete adequate amounts of phosphate through our kidneys. Our bodies have a way of protecting themselves. In order to do this, the phosphate binds with calcium and gets stored first in our bones. When the bones reach their genetic capacity, they go to our muscles, tendons, ligaments, and even our brain. We all end up with osteoarthritis, which is calcium phosphate crystals in the joints if we do not clear the phosphate. This build-up is seen in the nodules/swelling we have on our bodies. I did not know I had any lumps until Dr. St. Amand showed me mine. Now I know I was saturated in phosphate! Our upper back and shoulders are one of the first areas to collect. We tend to find it hard to raise our arms for too long. Sound familiar? My sister, both daughters, and both granddaughters have fibromyalgia. We have all been diagnosed by Dr. St. Amand. I now believe that my grandson has the disease as well. Because I am very in tune with the mild signs and symptoms of the disease, I started noticing them on my grandson when he was two! We received the genetic defect from my mother, who also suffered from fibromyalgia. Dr. St. Amand has told me that he has seen severe symptoms in children as young as two years old.
At the Edmonton fibromyalgia conference on October, 2012, Dr. St. Amand explained to the audience that he believes the disease is passed on to the daughters and the sons. The ratio is 50/50 in childhood and then becomes 85% female and 15% male in puberty. Some males seem to “outgrow” their symptoms in puberty because of their large growth spurt and bone structure but will remain carriers of the disease. He believes that the population suffering from the disease could be as high as 40%.
The phosphate builds up in a calcium phosphate suspension and presses on our nerves, causing pain. It causes the muscle fibers to go into spasm forcing them to work all day and all night. No wonder we are tired! It also presses on our circulatory system, and some of us get Raynaud’s Syndrome, which is characterized by poor circulation with freezing cold hands and feet. It also slows down the production of ATP, adenosine-tri-phosphate. ATP is our energy molecule. It makes everything in our body work properly. With less ATP, many things do not work efficiently.
We tend to have irritable bowel syndrome, we tolerate heat and/or cold poorly, we have many sensitivities, and we can’t sleep well. Some of us get nasal congestion, poor memory/concentration, headaches, unexplained rashes and the list goes on. Some of us crave carbohydrates, as our bodies are looking for energy. This can cause us to exhaust our pancreas and become hypoglycemic. In hypoglycemic sufferers, insulin release is either excessive or insufficiently terminated by counter-regulatory hormones. If we don’t get the hypoglycemia under control, we can become diabetic. According to Dr. St. Amand, 30% of people with fibromyalgia are hypoglycemic. Another 45% have carbohydrate cravings. If there is alcoholism or diabetes in the family, there is a greater chance of you becoming hypoglycemic. Dr. St. Amand puts those of us with hypoglycemia on a special diet described in his book and explained in the “Resources” section on the Fibrofree website, www.fibrofreerecoverygroup.com
Dr. St. Amand finds that we cycle. This means that we have good and bad days. This is a PROGRESSIVE disease so eventually there are no good days left.
Treatment
Dr. St. Amand puts us on guaifenesin. This drug is FDA-approved, and certain types are even sold over the counter in Canada and the US. See the handout “Guaifenesin Sources” for more details. Guaifenesin is perfectly safe. However, I’ve been told if it sits around exposed to light, moisture, and air before it gets compounded, it can lose its potency quickly. Compounding guaifenesin does not make it long-acting. Special ingredients are required to make it long-acting. Long-acting guaifenesin is necessary with this protocol. I recommend that you get a baseline map (see below) prior to starting the protocol and continue to be mapped at least until you know you are clearing. If you cannot get mapped, you should write in a journal to monitor your symptoms.
Any compounding pharmacy “should” be able to make proper long-acting guaifenesin. I have mapped members that have used guaifenesin from three different pharmacies and are clearing well. Some do not. Your prescription should say, “Guaifenesin 600mg long-acting, dye-free. Take 300mg bid x one week, then 600mg bid x 3 months. Repeat x 4.” Bid means twice daily. Check with your insurance company regarding reimbursement. Some insurance policies will cover part or all the costs. I had two insurance companies that initially paid for it. Now, neither one will reimburse me! If your insurance company refuses to pay, usually they say it’s because it’s sold over the counter. However, only fast acting is sold over the counter in Canada. Occasionally, I do see Mucinex sold in Canada, but this is a combination of long and short-acting guaifenesin and contains blue dye. Dr. St. Amand does not recommend this brand of guaifenesin.
The Dosage
Dr. St. Amand starts us off with 300 mg of long-acting guaifenesin twice a day for one week. He slowly builds the dose up until we feel significant but TOLERABLY worse. The reason we must feel worse, in the beginning, was explained to me this way: Some people feel better for the first two days while the bloodstream is clearing the phosphates, but then the rest of the body starts to release their stores of built-up phosphate, and until the kidneys catch up, we will feel worse. He explains that it is hard work for our bodies to clear and it does use energy (ATP) in doing so. Patients have asked Dr. St. Amand, “How much worse will I feel?” and his response has been, “You will feel no worse than five years down the road if you do not go on the protocol”. I felt a tiny bit more discomfort at first, but in many ways, I was so much better right away. 20% of us start reversing at 600mg/day, 80% at 1200mg/day, and 90% clear at 1800mg/day. Dr. St. Amand has found that cytochromes can break down some of the guaifenesin in the lower intestine; therefore, if 1800mg/day of long-acting guaifenesin does not produce clearing effects, he now adds 400mg twice/day of fast-acting guaifenesin as tolerated.
Mapping
Dr. St. Amand knows the drug is working when he “maps” you and can tell your lumps are disappearing. Mapping is a manual muscle examination. It is done with your clothes on, checking for deposits. After one month, two muscles in your left thigh should be clear. I was trained in mapping in 2007 and book mappings on my occasional days off work. I rent a room at St. Paul’s United Church. The church charges $10/person so I ask for a $50 donation to Fibrofree for those that can afford it. $40.00 is donated to the Fibrofree bank account and is used for Zoom meetings, our website fees, etc. $10.00 goes to the church to cover their charges. In the past, Fibrofree has used donations for two conferences. One in 2008 and one in 2012. Dr. St. Amand and Claudia Marek, his medical assistant at the time, were the guest speakers. We have also donated a total of $10,000.00 to Dr. St. Amand’s research fund. We’ve funded displays at the Woman’s Show and the Health and Wellness Show, as well as the YMCA and the University Hospital.
Those of us who cannot get to a qualified mapper can write in a symptom journal to see the progress. This journal can be as simple as rating your symptoms from one to ten on a calendar.
On average, two months of the drug reverses one year of the disease. So, for me, I was 45 when I started, so I should be completely reversed by now, but I am one of the few slow responders, and although I’m 85% better, I am not 100% reversed yet. Don’t let this length of time discourage you, though. You do get better and better along the way. I was couch-bound. I could barely walk and had trouble talking and eating. Some days it was too hard to stand up. I was so weak. I returned to work after 2 ½ years on the protocol working 4 to 5 days/week. At 66, I’m now retired but work casual, picking up, on average, 2 shifts/week.
The Tricky Part:
Salicylates (sals) block guaifenesin. Dr. St. Amand first thought salicylates were only in medications like ASA. He has since learned that all plants have salicylates in them. This presents a problem because a lot (but not all) of our products, for example, shampoos, have plant materials in them. Two examples are aloe and mint. Any product that can be absorbed through your skin must be sal-free. No herbal medications of any kind are allowed. There are some companies that advertise salicylate-free products. One is Cleure, in California, at www.cleure.com owned by the dentist, Dr. Stay. She sells toothpaste as well as make-up, etc.
Another company, www.andrearose.com sold 100% salicylate free products for years. Andrea has retired but a new distributor will be selling her products at www.drjondc.com.
Dr. St. Amand has never been involved in anyway with the sale of these products. When in practice, in his office, he had empty boxes of all kinds of products. These are products that we can buy in any store. It is also against the law in the State of California for a physician to make any money on the sale of pharmaceuticals.
www.fibropharmacy.com sells some sal-free products. Pure topical butters are ok. However, some companies will add other plant oils to make them cheaper and will not mention this. Cleure products with butters are pure. When I was at a store in Guatemala, they were selling cocoa butter. They showed me how they got the butter by tapping the tree and letting the sap drip into little buckets. This did not come from a seed and they do sell to Canada and the US. Char, one of the FTC administrators for the online guai-group who unfortunately passed away, would always say “If in doubt…. Leave out!” I have doubt, so I leave out unless I’m purchasing from Cleure. This is a choice you will have to make for yourself.
Fibrofree has a huge list of salicylate free products on our website that can be purchased at local stores. Of course, we must always re-check ingredients because companies change them frequently. This list is only a GUIDE.
**Now online there is an excellent website, www.salsearch.com. You can copy and paste or type in ingredients and it will tell you if it is salicylate free or not! This makes the protocol so much easier and less scary than in the past.
How Do You Know What Is A Salicylate?
All plants have salicylates in them so we must avoid all plants and their oils, gels and extracts on our skin. The exceptions to this rule are the grains from corn, rice, oats, wheat and soy (CROWS). Refer to the quick sal-checklist on how to check for salicylates. I regularly teach you how to check for salicylates at our monthly meetings to make sure you are doing everything correctly.
Deodorant, Sunscreen and Toothpaste
Most store-bought toothpaste has mint hidden in the “flavor.” Please refer to our acceptable toothpaste handout for the complete list of salicylate-free toothpaste. Some people just use baking soda and water. We must use dental floss without mint. I, personally, like Alfree toothpaste. It is from Australia and with shipping costs just over $11/tube.
Deodorant and Sunscreens are tricky. *You must check the active and inactive ingredients. Many deodorants contain aloe or castor oil. Be careful. Most solids have castor oil except for a few clinical-strength products. For sunscreens, watch for octiSALate, homoSALate, castor oil, aloe, and eradicate (Mexoryl SX), and now exciplex. These are all salicylates and will block guaifenesin. Refer to our sunscreen handout for more detailed information.
**If a topical medicated cream is used, sometimes the insert will only say the active ingredients. You then must call the company and find out what are the inactive ingredients.
What About The Food We Eat?
You can eat almost anything except mint and tea. Coffee is ok in moderation. Tea comes from the leaf of a plant, and coffee comes from the bean. I put a small amount of frozen fruit into a cup of boiling water and enjoy my fruit-infused “tea”. It’s wonderful!
Mint is a strong salicylate, and it has been found that mint is put in the “flavor” of all store-bought gum. Even fruit flavors! Because gum stays in our mouths for a long time, we must avoid store-bought gum. Check www.fibropharmacy.com for a list of sal-free gums that you can purchase. I sometimes buy Spry fruit-flavored gum from www.luckyvitamins.com.
Candy has mint hidden in the flavour. You must check with the company to make sure there is no mint or menthol in the “flavor.” Fruit and vegetables are fine to eat as the enzymes in our body break down the salicylates before it enters our bloodstream.
Normal food amounts will not block your guaifenesin, but if you are using it to “do something,” it can. For example: Drinking lots of cranberry juice for a urinary tract infection. Anything strong enough to “do something”, is strong enough to block.
Can We Touch Plants?
If you accidentally rub up against one, it’s ok. If you are gardening, wear waterproof gloves. Grass is a plant, so we need to wear sandals.
Cleaning Products
Most cleaning products are chemicals but not all. I use gloves to be safe. Dishwashing liquids usually do not list ingredients; however, I’ve noticed that many dishwashing products in Safeway have ingredients listed now. We know that Dawn original (blue bottle), Ivory original and Palmolive are safe for us to use.
Dr. St. Amand has found that some people are susceptible to blue dye. He read a study where blue dye was shown to decrease energy production which impedes the ability to reverse fibromyalgia in some people. It doesn’t block guaifenesin.
Gloves
My gloves vary. I use nitrile (hospital type) for light duty and thicker ones for heavier duty. I saw cotton liners at London Drugs for $3. Check your gloves regularly for holes and replace when needed. Leather gloves are not appropriate without waterproof liners as the leather absorbs the plant extracts and transfers them onto your skin.
I highly recommend you buy the book: “What Drs. May Not Tell You About Fibromyalgia” by Dr. St. Amand and Claudia Marek.
This book explains the protocol in great detail. There is another book out as well. It’s called “What Drs. May Not Tell You About Fibromyalgia Fatigue”. It focuses mainly on the diet.
Due to the fibromyalgia conferences we organized here in Edmonton, there are now a few doctors that have a better understanding of the protocol. Most family physicians will now prescribe guaifenesin to their patients if they ask for it. It’s important to be armed with knowledge when you ask for a prescription. The Use of Uricosuric Agents handout can be printed to help your physicians learn more about this protocol.
I am willing to train any physician about fibromyalgia and the guaifenesin protocol. I have personally trained six physicians so far with very positive feedback. It’s important that doctors know how to diagnose fibromyalgia correctly and treat it with the guaifenesin protocol. If you live in Edmonton, please ask your doctor if he/she is willing to learn from me and let’s arrange a date. This will help you get better care as well as many others. It takes about 2 hours usually on a Sunday afternoon. There is no charge.
Fibrofree: www.fibrofreerecoverygroup.com
You can email me if you have any questions: cheryl@fibrofreerecoverygroup.com (preferred) or text me at 780-999-2788. I know this sounds overwhelming at first, but once you eliminate the salicylates from your products, it’s not hard at all. I recommend starting with as few products as possible so as not to overwhelm yourself.
I am dedicated to helping you learn the protocol. This protocol works if you do it 100% correctly. The younger you are, the easier and faster the reversal will be. We must stay on this drug for life. If we stop guaifenesin, the phosphates cannot be excreted, and they will build up in our bodies again.
Fibrofree has monthly Zoom meetings. Contact cheryl@fibrofreerecoverygroup.com for dates and times.
I believe it’s important to attend the meetings whenever possible to keep up with the changes, keep focused and get the support that you need. There is no charge. Fibrofree now has over 200 registered email members. If you wish to be on our reminder list for the meetings, just fill out a registration form that was supplied to me by the FTC. You can cancel at any time. This monthly email will remind you of the upcoming meeting as well as any updates to the protocol. It will also inform you of the latest Fibromyalgia news and Fibrofree’s future endeavors, as well as the latest research.
Facebook Support Groups
There are multiple Facebook support groups such as Dr. St. Amand’s Guaifenesin support group. Claudia and her wonderful team of administrators will help you with any concerns you are having. Fibro Fighters on Guaifenesin and Guaifenesin for Fibromyalgia are two other Facebook groups.
In Conclusion
Dr. St. Amand has given me my life back and I feel so grateful to be able to forward this life-saving information onto you. I wish you the best of health.
I will end with a quote from Dr. St. Amand:
“I must cherish the hope that the healed and healing will steadily ferret out others with fibromyalgia. Take on that task and then revel when you, too, experience restoring even one life to its potential. Accept it from me how powerful and enduring is that sensation.”
Translation: Dr. St. Amand hopes that once you are better, you forward this information as he has and enjoy the powerful sensations of doing so.
Cheryl Kowalewski, RN
Fibrofree Guaigroup Leader since 2005
Mapper trained by Dr. St. Amand since 2007
On Protocol since June 7/04
MAPPERS TRAINED BY DR. ST. AMAND
IN CANADA
CHERYL KOWALEWSKI, RN, Fibrofree Recovery Group Leader (2005)
Edmonton, Alberta
Diagnosed by Dr. St. Amand with Fibromyalgia in 2004.
Trained by Dr. St. Amand and has been mapping regularly since 2007.
For more information email: Cheryl@fibrofreerecoverygroup.com
Or Text at 780-999-2788
IN THE UNITED STATES
DR. MARGARET MACDONALD, M.D.
2020 West Colorado Avenue, Ste. 103
Colorado Springs, CO 80904
Phone: 719-249-0217
Dr. MacDonald has fibromyalgia and was a patient of Dr. St. Amand.
Dr. MacDonald is a family medicine doctor with a specialty in integrative and complementary medicine. She speaks English and does not accept insurance. Her fees include support services to help patients start and master the protocol.
DR. CARLA KUAON, M.D.
UCSF Medical Center at Mount Zion
1600 Divisadero St., San Fransisco, CA, 94143
Phone: 415-357-7700
Dr. Kuon practices Internal and integrative medicine. Besides guaifenesin, Dr. Kuon uses many modalities to treat pain, which is one of her specialties. She has an interest in genetics and fibromyalgia research. Dr. Kuon accepts Medicare and most insurance. She speaks English, Spanish, Portuguese, Italian and French.