The Guaifenesin Protocol

[Misfit Toy]

Has anyone ever tried the guaifenesin protocol? There was a book written about it called, "What Your Doctor Didn't tell You about Fibromyalgia." By Dr. Armand. This book and theory has been around for years.

This woman on this site I am on keeps telling everyone how great it is and she is sending people free books. There are other people on there who swear by it. They went from being totally disabled to going back to work. It also helps chronic fatigue syndrome/ME as well. The diet for the protocol is tough and what is asked of you is also tough. You're basically supposed to take Mucinex.

Has anyone tried this, or done this or heard about it and what are your thoughts?

There are many people who are claiming it gave them back their lives and that's why I am interested in what you have to say, or what you think about it.

 

[adreno]

It's a cough medicine (mucus thinner). What good is that going to do?

 

[Misfit Toy]

Look it up. It rids people of calcium phosphates due to improper kidney function.. It's strange.

 

[perchance dreamer]

I was on it years ago. It helped a lot with my fibro pain. I didn't notice any other symptom relief.

It's extremely restrictive because you have to avoid salycitates, and they are in so many products and supplements.

Lots of people have cyclical increased symptoms with Guai followed by periods of improvement. I was part of the lucky 10% who did not have periods of worst symptoms. I just had improvement.

I went off it, and oddly, the level of pain relief I experienced with it did not return. Theoretically, according to Dr. Armand, it should have. I still have fibro pain, though. It's just not constantly excruciating the way it was before Guai.

 

[Undisclosed]

I tried it for about 6 months back in 2007. I think it helped a bit with fibro related pain reduction (originally guai was a pain reliever but it was too expensive to produce so they switched to cheaper things -- aspirin). I noticed no other effects and the protocol was too restrictive to be worth it.

 

[Misfit Toy]

@perchance dreamer - some people say they get worse before they get better.

Wow! Interesting.

 

[adreno]

Look it up. It rids people of calcium phosphates due to improper kidney function.. It's strange.

The guaifenesin protocol uses guaifenesin as an unapproved fibromyalgia treatment, despite the fact that a one-year double-blind study indicates that the treatment performs no better than placebo.[8][9]

Side-effects of guaifenesin include nausea,vomiting, formation of kidney stones,[13]diarrhea, and constipation.[14] Nausea and vomiting can be reduced by taking guaifenesin with meals.[2] The risk of forming kidney stones during prolonged use can be reduced by maintaining good hydration and increasing the pH of urine.

http://en.m.wikipedia.org/wiki/Guaifenesin

Sounds very unimpressive.

 

[Sidereal]

It's a cough medicine (mucus thinner). What good is that going to do?

For what it's worth, it's one of Goldstein's top meds for CFS. As with everything else, not everyone responds.

I've tried it several times. It did absolutely nothing for me except make me slightly anxious.

 

[adreno]

For what it's worth, it's one of Goldstein's top meds for CFS. As with everything else, not everyone responds.

I've tried it several times. It did absolutely nothing for me except make me slightly anxious.

What's the proposed mechanism?

 

[Sidereal]

What's the proposed mechanism?

Antagonist at the glycine site on the NMDA receptor.

 

[CFS_for_19_years]

I've taken guaifenesin regularly since 1990 to help thin and expel mucus. At a later time when I followed the guaifenesin protocol of resticting salicylates, I had a herx reaction, where within a day of restricting salicylates I developed a fever and severe muscle pain in my shoulders. If I recall correctly, these start-up reactions were similar to others.

Even though I went through this reaction, my condition never improved in the slightest. Somehow salicylates interfere with the protocol. Salicylates can be found in food and toiletries, such as mint-flavored toothpaste, something most people use every day.

 

[Misfit Toy]

Yes...it seems really hard to avoid salicylates. That's a major hurdle.

 

[perchance dreamer]

When I was on the Guai protocol, I joined an online guai support group, which helped tremendously. They had lists of various products that were safe (no salicylates). They also showed common ingredients that were or were not safe. Members were very responsive with questions.

Still, it was a huge commitment to follow the protocol, and for me, it bred paranoia because you have to be just so careful. It's not that way for everyone, particularly men, I think, who typically don't use as many products as women.

I'm still glad I did it, though, because I got pain relief . However, my story isn't typical in that I didn't have periods of feeling worse from the protocol, and the pain relief has lasted even after I got off it.

Another consideration is that guai is now a lot more expensive since they made it OTC. When I was on it, it was prescription and very inexpensive, even without insurance. It wasn't patented at that time.

 

[CFS_for_19_years]

Another consideration is that guai is now a lot more expensive since they made it OTC. When I was on it, it was prescription and very inexpensive, even without insurance. It wasn't patented at that time.

I learned to buy guaifenesin in bulk, first from Canada, and now the least expensive place I've found is an herbal store here in the US. I buy it 2 lbs. at a time and pack my own capsules.

 

[Hip]

When I was on the Guai protocol, I joined an online guai support group, which helped tremendously. They had lists of various products that were safe (no salicylates). They also showed common ingredients that were or were not safe. Members were very responsive with questions.

Still, it was a huge commitment to follow the protocol, and for me, it bred paranoia because you have to be just so careful. It's not that way for everyone, particularly men, I think, who typically don't use as many products as women.

You don't have to worry about the salicylates in your diet and the food you eat, and least not in the first instance.

Dr Kurtland told me that you only have to avoid salicylates in cosmetics, lotions, vitamins, supplements and acetylsalicylic acid in pain medications. You don't have to worry about salicylates in food (except perhaps teas, as tea is high in salicylates).

See: Quick Check For Salicylates.
More comprehensive list of salicylates to avoid can be found here.



The Guaifenesin Protocol

To do the guaifenesin protocol, you follow this salicylate-avoiding protocol while taking guaifenesin. You start with a dose of 300 mg of guaifenesin twice daily for a week, and if you feel worse (eg, with flu-like fatigue), this indicates that the guaifenesin protocol is working, so then you remain on that dose level. This 300 mg x 2 dose level apparently works for 20% of fibromyalgia patients.

If you don't start to feel worse after a week on that dose level, then this indicates the guaifenesin is not working, so you then need to increase your dose of guaifenesin to 600 mg twice daily, whence the protocol will start to kick in for a lot more patients. Apparently 80% of fibromyalgia patients will feel the protocol kick in at either the 300 mg x 2 dose level or the 600 mg x 2 dose level.

Reference: The Guaifenesin Protocol - Fibromyalgia Treatment Center

The remaining patients who do not respond may need a higher dose level still, and Dr Paul St Amand then goes up to doses of 900 mg twice daily, or even 1,200 mg twice daily. Reference: Information on Guaifenesin

The general idea is that you find your lowest therapeutic dose level of guaifenesin. Once you have found it, you then stick to that dose level.

Only if all the above dose levels of guaifenesin fail to get results, do you then start to look at your diet, and then try to remove the foods high in salicylates. But this is a last resort.



Theory of the Guaifenesin Protocol

Dr Paul St Amand hypothesized that fibromyalgia patients may be unable to properly excrete phosphates from their kidneys (it is the proximal tubules of the kidneys that excrete phosphates).

The theory is that this leads to calcium phosphate deposits building up to harmful levels in the muscles, joints, brain and other areas of the body.

These calcium phosphate deposits are similar to the tartar buildup you get on teeth, and indeed, when Dr St Amand noticed that his fibromyalgia patients had increased tartar build-up on their teeth, this alerted him to the calcium phosphate issue.

Taking guaifenesin causes the kidneys to excrete more phosphate, and so should reduce these excess calcium phosphate deposits.

Salicylates block the action of guaifenesin in the kidneys, which is why major sources of salicylates must be avoided while undertaking the guaifenesin protocol.



Interestingly, I started getting a significant build up of tartar on my teeth as soon as I caught the enterovirus that triggered my ME/CFS. Prior to catching that virus, I almost never had tartar build-up.

I tried the guaifenesin protocol myself some year ago, but did not notice any benefits at that time. Though I only kept to low doses of guaifenesin, because I got diarrhea side effects at higher doses.



Some Links To Guaifenesin Protocol Info

The phosphate retention theory
Treatment: the protocol
How the healing process occur with Guaifenesin

The Guaifenesin Protocol - Fibromyalgia Treatment Center
The Truths and Myths of the use of Guaifenesin for Fibromyalgia, by Mark London

Treating Fibromyalgia With Guaifenesin
Guaifenesin protocol - Wikipedia

Guaifenesin Protocol — How Can I Tell If I'm Blocking Guaifenesin?
Q&A Session with R. Paul St. Amand, MD
Can One Slow the Progression of Fibromyalgia Without Guaifenesin?

 

[Misfit Toy]

@Hip -thank you for such a cohesive post. My gosh, that's some work you did.

 

[Hip]

@Hip -thank you for such a cohesive post. My gosh, that's some work you did.

Yeah, I still had all the info and links I posted above in a folder on my computer, dating back to 2008, which was when I tried out the guaifenesin protocol for my ME/CFS.

Actually, I would not mind trying out the guaifenesin protocol once again, because my IBS is much better these days, and so I may no longer get the problematic diarrhea side effect from guaifenesin that I did in the past.

Thanks for bringing this to our attention on the forum.

 

[Hip]

By the way, although it is recommended to take the Mucinex extended-release guaifenesin tablets, so that you get an even release of guaifenesin throughout the day, these extended-release tablets are expensive, costing around $40 for 65 x 600 mg tablets.

By contrast, Kirkland immediate-release guaifenesin costs around $10 for 200 x 400 mg tablets.

My guess is that if you bought these immediate-release tablets, and divided your daily guaifenesin dose into say 4 split doses per day, that might mimic the desired effect of the extended-release tablets.

 

[adreno]

Theory of the Guaifenesin Protocol

Dr Paul St Amand hypothesized that fibromyalgia patients may be unable to properly excrete phosphates from their kidneys (it is the proximal tubules of the kidneys that excrete phosphates).

The theory is that this leads to calcium phosphate deposits building up to harmful levels in the muscles, joints, brain and other areas of the body.

These calcium phosphate deposits are similar to the tartar buildup you get on teeth, and indeed, when Dr St Amand noticed that his fibromyalgia patients had increased tartar build-up on their teeth, this alerted him to the calcium phosphate issue.

Taking guaifenesin causes the kidneys to excrete more phosphate, and so should reduce these excess calcium phosphate deposits.

The theory is wrong, and the drug doesn't work like that.

Bennett evaluated all study participants every three months for symptoms, tender points and serum/urinary levels of uric acid and phosphates. None of these variables significantly changed over the year and the response to guaifenesin was the same as that for the placebo. Now, what about the claims on the Internet and elsewhere that this study was fatally flawed because patients might have used cosmetics and other topical products that contain salicylates? Dr. Bennett provided six scientifically based reasons to toss out this claim:

1. Both the serum and urinary levels of uric acid and phosphate were all in the normal range and no change was noted over time.
2. If some patients were taking small amounts of salicylates by whatever method, there should have been a significantly reduced urinary excretion and elevated serum level of uric acid, but this was not observed.
3. Dermatology consultants to Dr. Bennett have explained that patients would have to plaster their face with makeup several times a day to absorb enough salicylates to affect their urinary excretion of uric acid.
4. Only in the last year have the proponents of guaifenesin therapy learned that cosmetics sometimes contain salicylates, yet they have been stating for years that this drug is a cure for fibromyalgia (without ever controlling for cosmetic use).
5. The claimed “cycling of symptoms” was not observed in this study.
6. Lastly, guaifenesin was not found to increase uric acid or phosphate excretions. Thus the postulated action of guaifenesin—the reason cited for its effectiveness—could not be demonstrated.

After the study showed that guaifenesin performed no better than a placebo, and the blood/urine tests revealed that it could not possibly work as suggested by Paul St. Amand, M.D., the guaifenesin controversy is still alive. Despite St. Amand’s role as advisor for the study design (he selected the doses, etc.), he has since published a book on how guaifenesin can “cure” people with fibromyalgia.

http://www.fmnetnews.com/coping-resources/consumer-alerts/product-6

 

[Hip]

I am aware of the Bennett research. Mark London, in his analysis of the guaifenesin protocol, refers to that research, and London thinks that the phosphate theory is inorrect. See:

The Truths and Myths of the use of Guaifenesin for Fibromyalgia, by Mark London

Regarding the increased phosphate excretion, London says this:

As for Dr. St. Amand's urine tests on his patients, which he claims show increased phosphate excretion, it should be noted that many drugs initially cause side effects that gradually disappear. Thus, long terminal studies are the only reliable tests.

However, Mark London does not agree with Bennett that guaifenesin is just placebo, and London thinks guaifenesin may be helping fibromyalgia patients via other mechanisms, such as through its ability to relax skeletal muscles, and/or via its analgesic effects.

So for anyone with fibromyalgia or muscle pain in ME/CFS, the guaifenesin protocol may well be worth trying, even if the phosphate build-up theory is not correct.