I am very tardy in following up on my last post about my visit to fribromyalgia specialist, Dr. St Amand. The first time I saw him, I had been following his protocol for about 6 months without having any noticeable change in symptoms, unlike most people, who feel dramatically worse at first and then begin to feel better. I was very discouraged to learn that my efforts had indeed been ineffective. He suggested that I switch to prescription guaifenesin rather than the over the counter one and recheck to be sure I had not overlooked a source of salicylates that might be blocking the medication. I filled the prescription at the pharmacy near his office and went over all my personal care products and supplements with his assistant, but we found no blockers.
After I returned home, I signed up to receive the Guai Group Digest, an e-mail newsletter for those following Dr. St Amand’s protocol which allows them to send questions to a team of volunteer administrators, a panel of veterans who have reversed their own FMS symptoms who now provide support, encouragement, and advice, as well as the voice of experience. (It is also a safe place to whine and complain to sympathetic ears about how frustrating and unfair life can be). This forum is especially helpful to those who are unable to visit Dr. St Amand and must go it alone using the doctor’s books as a guide. This is an invaluable service, since a common symptom of FMS is mental confusion, often called “fibro fog,” which makes even reading and understanding what you read difficult at times. Any questions that the administrators can’t answer are passed on to the doctor or his assistant, Claudia Marek, an FMS expert in her own right.
I resolved to read every one of the digests, usually several a day, to learn as much as I could. There I found the real-life drama of the trials and triumphs of others as they got worse and as they got better and eventually returned to a normal, pain-free life. “Dr. St Amand gave me my life back,” is a common refrain throughout the posts. It was there that I discovered a possible reason for my own failure.
I knew that herbs could be potent blockers when taken in medicinal amounts. I had specifically asked about drinking tea and was told that ordinary supermarket tea was acceptable. However, after seeing in the digest that a number of people believed that drinking tea had caused them to block, I decided to cut back on my favorite white tea. I still drank a little, but diluted it so that it was really just flavored water. Within a few days, one of my worst symptoms disappeared. I didn’t even know it was an FMS symptom, but I had suffered from temperature fluctuations for years, with hot flashes that didn’t seem to be hormone related. They were getting worse with time, often more than once in every hour. They suddenly vanished. (It seems that fibromyalgics can make heat but not energy.) Then I had a few pain-free days in a row and I noticed that I was feeling better and had more stamina. I made an appointment to have Dr. St Amand remap me to see what was happening.
On my first visit, the doctor had marked a diagram that showed all the abnormal swollen places that are characteristic of FMS. (The left thigh is usually the first place to clear when you have found your correct dosage if you are not blocking the guaifenesin.) He did a second map without referring to the first one. Then he took out my old map and showed them both to me. There were about half as many places marked on the new map and none in my left thigh. Yes, it was working!
In the Guai Digest, many people speak about their “guai birthday,” the day they started the protocol, which led to their recovery. I failed to mark down the date when I started, and I had to start over later anyway, so I‘ve decided to adopt March 25, 2009, the day of my second appointment with Dr. St Amand, as my guai birthday. That was the day that I learned that in spite of all my doubts and misgivings, this was going to work for me.
I will take a break here and continue at a future date when I want to share with you some very exciting new research that supports Dr. St Amand’s treatment protocol.
Previous posts on fibromyalgia are here (oldest post is first): http://carbwars.blogspot.com/search?q=lyrica, here: http://carbwars.blogspot.com/search?q=part+2, here: http://carbwars.blogspot.com/search?q=Part+3, here: http://carbwars.blogspot.com/2008/07/summer-adventures-southern-california.html, and here
(C) 2009, Judy Barnes Baker
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No, I have not, although I have read that some conditions, such as autism and ADHT are being treated by eliminating salicylates from the diet. In Dr. St Amand’s protocol, products containing salicylates cannot be used on the skin or consumed in concentrated quantities (as they would be in an herbal supplement) not because they cause fibromyalgia or make its symptoms worse, but simply because they are similar to guaifenesin and are preferentially taken up through the same channels so they prevent the medication from having any effect.
In your fibromyalgia research, have you ever come across any of the literature on salicylate intolerance?