posted 11-23-2002 07:14 PM            

The only time you would need to change your diet is if you find out that you are hypoglycemic (HG) and need to decrease the number of carbohydrates. Dr. St. A finds that about 40% of his FM patients are also HG and don't really have improvement in symptoms until they go on the diet.

I've been taking it for 22 months now. Doing great.

posted 11-25-2002 09:38 PM            

I actually know of a couple of qualified mappers in FL. Not sure what part of FL you are in, but there are some there!

Best wishes,

posted 11-27-2002 12:01 PM            

You sure aren't alone in those desperate feelings! With this DD, it really can seem like everything that matters in life is stolen away over time. BUT, there is HOPE here!

I think I can partially understand your grief for that little girl who was in so much pain. I watched my daughter go through similar things as a little girl. It wasn't the same as experiencing it, but it was heartbreaking to watch.

Please don't give up. I know people who literally have been able to get out of wheelchairs and give up their canes after time on the guai protocol. The main problem is that it takes TIME to work and care in avoiding salicylates.

Very best wishes,

posted 11-28-2002 02:22 PM            

Beware of the product lists in the book, however. Manufacturers change their formulations of skin, hair, etc. products all the time, and there are quite a few products listed there that are no longer sal-free. If you do a web search for guaifenesin and fibromyalgia, you'll find several websites that maintain up-to-date lists of products and ingredients that are ok to use vs. those that contain sals.

Let me know how you react. Dr. SA recommends that people stay at 300mg twice a day for 2 weeks, then increase to 600mg twice a day, if they haven't noticed a big change. Usually the guai makes people feel noticeably worse, especially during the first cycle. But I've known several people who gained more energy and began feeling better overall, and that "counts," too, as an indication that you've found your correct dose.

YAY!!!

posted 12-03-2002 02:07 AM            

Also, soma isn't a favorite of the DRs at all. I don't think it helps with my pain. It does help me to sleep on occasion, but since it's so addictive it won't help for ever.

Have you tried Darvocet for the pain? That at least helps a little bit. I am on Vicoden because I also had a car accident and so there is extra pain. The Vicoden really helps the FMS pain, but I try not to take it willy nilly. I will often use all other methods of relieving pain first.
ie. stop what you are doing and rest on heat.
Soak in a hot tub with epsom salts.
massage
a nap
pacing
cutting way back on activities
It was given for the pain from Prolotherapy treatments--joint reconstruction. I was shocked at how well it helped the FMS symptoms. But I know if I use it daily it won't work, so I save it for special occasions, not three times a day to do whatever I want to.

posted 12-03-2002 04:57 PM            

------------------
If you don't stand for something you will fall for anything.....

posted 12-04-2002 12:19 AM            

Vengence was swift. I got FMS 18 months later and my symptoms mirrored everything she had told me. I thought I was smarter than that illness.

posted 12-06-2002 12:50 PM            

When I mentioned it to the internist who was the first doctor in 10 years to diagnosis me 4 months ago he laughed and told me facetiously to drink "Robitussin".

To me it sounds like another "Voodoo" home remedy cure with only anecdotal success that can't be measured and is even more suspect given the fact that these problems have a commonality in brain chemistry, not phosphate retention in kidneys....

But, I understand the desperation I see here....

My posts are not designed to be uncomfortable , but to get people TO THINK!!!

Look at the sheer number of drugs we all take...this has an influence from the drug companies to your own cynical doctors who can't cure you, but take your money, right?

I think things will change only when you understand that just as you can't cure Polio with drinking orange juice or taking supplements, we will not make real strides in this condition until we WAKE UP and smell the coffee.....look at how many of you take Noni juice or Malic acid or Magnesium...does it work?????
Taking Guaifenesin is stepping into the witch doctors tent and having beads shaken in your face.

IT WILL TAKE ONLY SUSTAINED PRESSURE BY A STRONG UNITED GROUP OF PEOPLE TO LOBBY CONGRESS AND THE DRUG COMPANIES TO EFFECT CHANGE FOR THE BETTER. WE NEED THAT "MAGIC BULLET" CURE....not the current patchwork quilt of prescription potpourri which itself DOES NOTHING!!!!

posted 02-16-2003 07:11 PM            

I have done the guaifenesin protocol without the body mapping. The doctor who prescribed it for me said he didn't find it that useful.

Oh, and yes, I have had very good results with Magnesium Malate plus Vitalaxin (it's the female hormone, relaxin) in the past. I was completely pain and insomnia-free for 5 months, during which time I trained for and ran a marathon. I guess this was pushing my body a little much, because my symptoms came back with a vengeance, and only decreased again once I'd been on guaifenesin for over a year and had totally eliminated all excitotoxins from my diet.

[This message has been edited by SharonMWinner (edited 02-16-2003).]

posted 02-17-2003 12:32 AM            

At the moment I am taking supplements that "band-aid" the "other responses". I need to try a supplement that deals with symptoms at a higher level than some of the supplements that I am taking now.

Although I have been very successful at dealing with my symptoms, it is foolish to ignore other people's success. I would like to try guaifenesin as there is nothing to lose and everything to gain.

posted 02-17-2003 02:25 PM            

You need a prescription from your attending physician for the guiafenesin. All pharmacy's carry the inexpensive drug. I do believe our cellular activity is "messed up." I took guia--600 mg bid (twice a day for 2 weeks when I had a sinus infection. It gets rid of the mucus in the sinuses and lungs. It helped a lot, and I wasn't paying any attention to my products I used at the time. I noticed the swelling in my fingers was started to disappear. Then I started aching all over. Maybe it was starting to work in the cells by getting rid of the phosphate buildup. I have a permanent knot in my neck on the right side that has "hardened." (Calicified) I believe it is due to the crystal buildup of calcium which is also messed in our cellular activity. I wonder if we can do both the guia and LDN? LDN is to help the autoimmune system kick in, right? Anyway I ran out of the guia. I don't have an appointment until March with the doc. At that time we will discuss both medications as he did suggest the guiafenesin therapy. I just hate the fact that I will have to watch all my products for sals. (Someone somewhere said the sals were "a cop out"), an excuse if the guiafenesin does not work. If this is working for some people I am very happy for them.

I guess the colostrum thing is not the cure either. I think if some are getting better on it they had a nutritional deficiency to begin with that caused fibro symptoms (in my opinion.)

By the way, researchers are looking into SV40, a contaminant in the polio vaccine we were given as children. Also parovirus B19 and others called Stealth Viruses. Also bacteria in the blood, called mycoplasma infections. It takes such a long time for research results. If the cause is found the cure will probably need years of research. lol!! In the meantime we are all doing the best we can to get by. So I feel that whoever has even a tiny bit of improvement we need to know how they got it!! I am so glad everyone is willing to share on this message board. Sincerely, Dawnsmist

posted 02-18-2003 12:05 AM            

The 4.5mg LDN reduces and eliminates most FMS symptoms but not all of them.

I have apparent circulatory problems that the LDN does not adequately address. I have to take other supplements for those problems.

It would be nice to consolidate the supplements that I take down to just LDN and Guaifenesin and save myself money and effort.

posted 02-18-2003 12:44 AM            

I admire anyone who has consistently maintained the Guaifenesin protocol.

posted 03-07-2003 03:22 PM            

JD.