Posted 4/22/2015 8:58 PM (GMT 0)
I just wanted to add a comment for anyone who might come across this thread when searching for Fibromyalgia.
With Fibromyalgia, the standard treatment is "light" exercise and tricyclic antidepressants. Other than that it treating symptoms.
Fibromyalgia does not "cause" that has been identified, although there are doctors out there think they know the answer. So far the only attention that has been paid is by pharmaceutical companies. They really have no interest in finding a cure because they make a lot of money providing drugs to treat the symptoms. As a matter of fact, some drugs have been repurposed to extend their patents (or is it copyright).
One of the doctors is Dr St Amand in Marina Del Ray, CA. He wrote a book titled, "What your doctor May Not Tell You about Fibromyalgia". The book in and of itself is a must read if you have Fibromyalgia. Even if you don't decide to use Guaifenesin, the first 4 or 5 chapters pulls together everything that is known about Fibromyalgia and it's symptoms.
There is a great online support group for it. They are all employees or former patients who have been through the treatment start to finish. Dr St Amand has pretty high success rate in his practice, but if you are doing it on your own many people have been very successful with heavy use of the online support group. There have been a couple of studies that Dr St A (and some of his patients) have participated. So far they have proved it is genetic and are trying to narrow down the genes involved.
It is not easy, but it is something you can so on your own. The medication used is an over the counter medication that has been around for something like 50 years. The part that is not easy is that you don't just take a pill. Just like other medications, they know that anything that is made from plant products put on the skin or inside the mouth (toothpaste, mouthwash, etc but not food or medications) can counter act the action of the drug.
However, this protocol has been around long enough that a small industry has grown up around providing these kinds of products that are guaranteed not to counter act the medication. You can just go to a particular (I know there are several) website and look up "makeup" and you will be given a list of products they have that are Salicylate Free (the compound in the product). No thought about it just buy what you need. Some products are available in your local stores and lists are available, but since you take the chance that the formulation could change without all the ingredients being listed many people just prefer going to a website with no fuss and no muss.
The great thing is that Dr St A doesn't sell anything but the book and some DVDs on the site. So there is no profit for him if you decide to try this. The profits go to support research. He does not get kickbacks from the business that have grown up around it. Their information is given out to provide you with the choices that are available. The medication is over the counter so it is not covered under insurance, but it also available if you want to purchase so you don't need a doctor's permission.
As Traveler said, it was worth a try. I think that Lyme and Fibromyalgia overlap so much because they both are systemic. They may attack things in different ways, but the results are the same. For example, migrating muscle pain. For Lyme, the symptoms are the result of bacteria traveling around through the blood stream. They move into muscles and start attacking causing pain. For Fibromyalgia, something is likely traveling in the blood stream. Whatever it is enters the muscles causing pain. Muscles can only react in a few ways and pain is the main one. So it shows up on the symptom list for not just Lyme and Fibromyalgia but also many autoimmune diseases and probably every single chronic pain condition that has been identified.
I used the protocol for many years and I did improve, but eventually I plateaued and I watched people pass me by in their recovery. In my case, it was likely allergies to Salicylates themselves and by taking them out of my system I didn't so much improve as prevented some of the things that were causing my problems. By eliminating sals, I eliminated a source of allergic reactions. Allergic reactions are not just stuffy head and nose, or swollen throat, etc. They also cause muscle pain, and many of the other symptoms that look exactly like Fibro and Lyme (and others). There is a lot of research surrounding that going on right now.
When by accident I stumbled onto the idea of Lyme, i had already been trying other treatments and looking at other reasons for my symptoms. It was actually, not so much and accident as all the planets lining up. My eye doctor went to a professional meeting, the speaker had a wife with all the same non-specific symptoms, they had been to doctor after doctor with no luck, someone eventually tested her for Lyme, they found someone who knew how to treat and was able to treat it, she got better and he spent a lot of time as a doctor telling people that Lyme existed even if you never noticed a bite. He talked about the fact that exposure could have happened very long ago and in a very distant location. She grew up in PA and was living in NC when she was diagnosed. NC "doesn't have Lyme". So it was probably the fact that he was a doctor contributed to her diagnosis and recovery.
My eye doctor kept the contact information. She had another patient that she suspected might have Lyme and found out what she could (basically, about the Igenex tests and a few names for LLMDs) and kept the emails. I happened to show up to have some tests done because I was put on a drug that over time cane cause changes in the eyes. She has know me for 18 years and knows that I come originally from New England and that my symptoms started while I lived in New England.
So with these very non-specific systems, there are many diagnoses that fit. I did lots of research and found some very non-specific symptoms that I had and showed up on a pretty comprehensive checklist. A couple were symptoms people just don't mention in a doctors office. One was so weird, when I told my Rheumatologist about it he said, "I have never had anyone describe that to me ever." He would have thought I was off my rocker except I've been his patient for 10 years and he trusts me to research things and determine if I want to try it. I tend to be pretty level headache.
So I guess I wanted to say, don't give up. There are other answers out there. I know it gets tiring and discouraging but if I can make it 35 years with symptoms anyone can.
P.S. One more thing about the Guai Protocol, it talks about mapping and there are a huge network of people so you can usually find someone in your area. But don't let the cost of that or the inability to find someone stop you from trying the protocol. It can be done without mapping usually by journaling your symptoms and how you feel. Many people do it without being mapped and without seeing Dr St Amand(or other Doctors who are following his lead). My doctor now asks me if i am following the protocol at every visit and asks me lots of questions since I told him I was on it.
I hope I don't get my knuckles slapped for that, but the forum moderators (for fibromyalgiatreatment.com) are pretty strict about the protocol. If you deviate from the protocol and then its unsuccessful, the protocol gets blamed. It throws off the data they do have and makes it harder to help people out. Having said that, I always learn everything i can about things and make an independent evaluation.
Good Luck, Kim