Fibromyalgia Assistance Foundation

I mentioned this group at our last meeting. My doctor is on their board of directors and I want to see what they have to say about the Mucinex treatment. Their Web site is www.fibrohelp.com.

Here is the information on their next meeting:

The next Support Group meeting will be on Monday, March 10, at 5:00 o'clock. Premier Building located at the Southwest corner of Union and Austin Bluffs Parkway (enter off Union). It's in Meric Rm. 210. Video explaining disease and protocol will start at 5:00 and the regular group meeting starts at 6:30. If you have any questions, call us at 481-2230.

I'm planning on being there.

I went to this meeting and found it very interesting to hear success stories from people using the Guai treatment. They showed a video from Dr. St. Amand who developed the treatment. I have a copy of it, so if anyone else wants a copy, I will make one for you. They also handed out copies of his book.

The group seemed very supportive and the leaders encouraged members to call them whenever they're having a bad day or just have a question. My doctor was there as well (Dr. Juetersonke) to answer any questions.

I have read Dr. St. Amand's book on the Guai treatment and would be interested to hear from people who have actually tried it. It seems a little hokey to me. I've tried so many things over the years but I'm still willing. I just want to meet someone who is actually doing the protocol, not just read about it.

Written testimonials are usually the weakest proof--you never know if it is real or made up. A real person though, I'd be willing to hear anything she/he has to say about their experience on the Guai protocol. I also remember reading something about a modified Guai protocol, but I can't remember where I read it. I'll try to track it down again.

I hope I am well enough to make it to the meeting. I'm looking forward to meeting other people who have this debilitating "disease," or syndrome as they now call it. I have 2 friends who have fibro (one also has Lupus) and sometimes we commiserate about it. New people will bring new perspectives and I am looking forward to that as well.

Cheers!

Doug,

I haven't tried the Guai protocol but found an interesting, ongoing research paper on the topic from MIT a few months ago. The info is:

The Truths and Myths of the use of Guaifenesin for Fibromyalgia
or
Guaifenesin: One Medicine, Several Effects
by Mark London
Last modified: 02/24/2008 20:05:51

http://stuff.mit.edu/...

It is lengthy but interesting....another data point.

Mary G

Doug,

Everyone in the Fibromyalgia Assistance Foundation is on the Guai treatment, so if you want to hear testimonials, I would suggest you contact them to find out when they will be holding their next meeting.

Doug,
I tried the Guai last year. After reading about it and seeing Dr. J. I gave it a try. I liked Dr. J. and he did find I had sleep apnea and needed more vitamin B-12 and I have nothing but good to say about him.
The treatment was way too much pain for me to handle. I found myself going from feeling bad to bedridden. I know this was an extreme example of the ?side effects? from the Guai treatment, but to go from semi-functional to vomiting on myself in my bed was more than I could handle.
On the other hand, The Nazi?s from the fibro group were too much to handle as well. Since I did not have a alter in my home to Dr. S. A. and I would not write a ?prayer? to him daily on the forum I was told I was an asshole and kicked off the site. Getting sick from a medical treatment is called a ?side effect? but the Nazi?s will not let you call the ?side effects?, ?side effects?. It?s merely the process of cleaning your system. Kind of like when bloodletting was considered a treatment.
Again, my case was severe from the ?side effects? and you may not experience the same thing. If you want to try it I have some Musinex you can have.
Doc