a certain protocol, has anyone heard of it?

Has anyone heard of the "Guaicinafin Protocol?" Created by a Dr. in So. CA.
It is a medication and diet. I am not sure if I spelled the medication correctly or not.
Some people say they are able to get out, work, have a life......etc. Hard to believe if it
did work so well it would not be front page news, or at least go around in the forums of CFS.
Let me know if you have heard of it, what you think, or if you tried it, how is it? I am very
curious.
Thanks, Leslie

Comments

Hi, the Guai protocol was popular a long time ago. Some did improve. Most have moved on to other things I think. The theory was not complete either, it had problems with it but I was writing about this many years ago, I now forget most of the details. Bye, Alex
 
Thanks for those who responded. I lived in SC, near the NC boarder and there are some there with a support group who say this is the best since sliced bread. I have a friend there who wanted to know about it, she is very sick and looking for something, as we all are.
Leslie
 
Leslie;bt5717 said:
Thanks for those who responded. I lived in SC, near the NC boarder and there are some there with a support group who say this is the best since sliced bread. I have a friend there who wanted to know about it, she is very sick and looking for something, as we all are.
Leslie
The stuff is cheap and may help some. I would encourage anyone to try it for awhile. I used to live in Lancaster, SC and recall a few with an fms label who claimed it helped them. I tried it for awhile. Can't recall any great improvement but it did seem to relieve aches and pains.

Paula
 
Paula, We lived in Lake Wylie, the other side of Rock Hill. I know where Lancaster is. There was a support group for this protocol that met somewhere in South Charlotte. I never went to it, just seemed to good to be true, and only a few said they felt better.
Leslie
 
Ah, the old Guaifenesin protocol by Dr. St Amand. As I understand it, it is very difficult to follow Dr St Amand's protocol, as it calls for complete avoidance of all salicylates. This is hard because many many foods, including fruits and nuts, as well as a wide variety of medicines and cosmetics contain salicylates. Plus, people are expected to feel considerably worse before improving on this protocol, which can take months to have any positive effect. I've also been convinced that there is no real support for the theory behind the protocol, having to do with excess phosphate deposition in the tissues (not found to be true in fibromyalgia, the condition the protocol is supposed to treat). The idea is that uricosuric drugs (that increase excretion of uric acid) somehow also increase excretion of phosphates, but there is no evidence that this is so that I know of, or that phosphate excess is present in FMS.

Also as I understand it, if you fail to improve on this protocol, it's said to be because you didn't do it right, generally because you didn't avoid salicylates stringently enough.

There's a nice discussion of all of these issues in this article: http://web.mit.edu/london/www/guai.html

Cyclic variations in symptoms (worse then better then worse) while on the protocol are attributed to the usual "detox" excuse, rather than the fact that fibromyalgia, like ME/CFS has ups and downs in intensity and symptom expression.

While I've been willing to try most anything that I can afford, I skipped this one as too difficult and too problematic in terms of the theory and its lack of support.
 
Ah, the old Guaifenesin protocol by Dr. St Amand. As I understand it, it is very difficult to follow Dr St Amand's protocol, as it calls for complete avoidance of all salicylates. This is hard because many many foods, including fruits and nuts, as well as a wide variety of medicines and cosmetics contain salicylates. Plus, people are expected to feel considerably worse before improving on this protocol, which can take months to have any positive effect. I've also been convinced that there is no real support for the theory behind the protocol, having to do with excess phosphate deposition in the tissues (not found to be true in fibromyalgia, the condition the protocol is supposed to treat). The idea is that uricosuric drugs (that increase excretion of uric acid) somehow also increase excretion of phosphates, but there is no evidence that this is so that I know of, or that phosphate excess is present in FMS.

Also as I understand it, if you fail to improve on this protocol, it's said to be because you didn't do it right, generally because you didn't avoid salicylates stringently enough.

There's a nice discussion of all of these issues in this article: http://web.mit.edu/london/www/guai.html. I found particularly interesting the part about guaifenesin acting as a muscle relaxant much like carisoprodol (Soma) which would explain why some would find it helpful for relieving "aches and pains"!

Cyclic variations in symptoms (worse then better then worse) while on the protocol are attributed to the usual "detox" excuse, rather than the fact that fibromyalgia, like ME/CFS has ups and downs in intensity and symptom expression.

While I've been willing to try most anything that I can afford, I skipped this one as too difficult and too problematic in terms of the theory and its lack of support.
 
Ah, the old Guaifenesin protocol by Dr. St Amand. As I understand it, it is very difficult to follow Dr St Amand's protocol, as it calls for complete avoidance of all salicylates. This is hard because many many foods, including fruits and nuts, as well as a wide variety of medicines and cosmetics contain salicylates. Plus, people are expected to feel considerably worse before improving on this protocol, which can take months to have any positive effect. I've also been convinced that there is no real support for the theory behind the protocol, having to do with excess phosphate deposition in the tissues (not found to be true in fibromyalgia, the condition the protocol is supposed to treat). The idea is that uricosuric drugs (that increase excretion of uric acid) somehow also increase excretion of phosphates, but there is no evidence that this is so that I know of, or that phosphate excess is present in FMS.

Also as I understand it, if you fail to improve on this protocol, it's said to be because you didn't do it right, generally because you didn't avoid salicylates stringently enough.

There's a nice discussion of all of these issues in this article: http://web.mit.edu/london/www/guai.html. I found particularly interesting the part about guaifenesin acting as a muscle relaxant much like carisoprodol (Soma) which would explain why some would find it helpful for relieving "aches and pains"!

Cyclic variations in symptoms (worse then better then worse) while on the protocol are attributed to the usual "detox" excuse, rather than the fact that fibromyalgia, like ME/CFS has ups and downs in intensity and symptom expression.

While I've been willing to try most anything that I can afford, I skipped this one as too difficult and too problematic in terms of the theory and its lack of support.
 
SORRY! Don't know how that got posted 3 times! I was just trying to edit it. The second 2 postings are what I wanted to post! Except only once. :oops:
 
Hi, My second Dr. that diagnosed me with F/M was Paul St, Amand, in Marina Del Rey, Calif., in 1995. His great research was based from his personal experience with having the illness himself, and also his children. I followed his protocal for one year, at that time he had done trials, at UCLA, which were not accepted due to the subjects not eliminating salicylic from their product use. Not to reiterate the post by Valentine most accurate, I can only tell my experience. In 1995 you needed a script for Guai, (called the Guai Group). I followed exact instructions, tossing out all my cosmetics etc.....took hours of reading labels. I did feel an improvement in pain. The way Amand described it was " it's like having tarter on your teeth, building up more and more, the Guai will break it down inside your body and in will flush out of system. Of course I had only my first symptoms and I though I felt better, not enough to keep up the rough regiment of checking labels......and stopped @ that early stage, i choose Pain meds.....
 

Blog entry information

Author
Leslie
Views
608
Comments
11
Last update

More entries in User Blogs

More entries from Leslie