Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

In early January of this year, I realized that my breathing was impaired by as a result of thick secretions lodged in there. I didn't have any sort of sinus infection, or head or chest cold preceding this. I haven't had a cold or bronchitis in years (there are some benefits to having my form of CFS), so had no expectorant on hand. I made it to the store on the 6th, and after much searching through what seemed like hundreds of bottles of brand name and store-brand cough preparations with all kinds of additives, I finally found the one that had only guaifenesin (100 mg/5ml). I started taking it, 5-10mls at a time (why waste energy washing that little cup 4-6 times a day when I can swig right from the bottle?).

After I'd been on it for 10-12 days, I received an email from someone asking me about taking guai for FM and had I ever done it before. I started to write my usual response to the question, her letter not being the first such I've received over the years.

My usual answer goes into how, upon being prescribed by the doctor I was seeing back in 1993-96, I took the guai tablets for 6 months. My doctor at that time didn't know about the salicylates issue, or didn't think it really mattered, as he mentioned nothing about it, and at that time (1994), the information available on the Internet was sparse and difficult to find for the neophyte I was then, and no one I talked to in the local CFS/FM support knew anything about it.

The only effect I noticed from taking the tablets was breaking out in little pimples on my face. I never felt any flare or worsening of my FM, nor any improvement. My understanding was that I would feel worse initially, and then slowly begin to feel better, the rate being approximately one month of treatment for each year I had been sick. (By 1994, I had been sick for almost 4 years, having been sick since late 1990 and diagnosed with CFS and FM in December 1991 by Jay Goldstein MD.) So, I stopped taking the guai tablets.

So, when people ask, that's what I tell them. I go on to encourage them to read the information at my site, to read Dr. St. Amand's book, and if they think it might help, to go for it.

This time, however, when I was writing my answer, it suddenly hit me that I'd been feeling increasingly crappy for several days. As I counted back, I realized that the start of the tremendous increase in pain, stiffness and general soreness of all muscle tissue (including breast tenderness worse than the worst PMS I've had through the years) had started within several days of starting the cough syrup. Nothing would touch the pain or stiffness, not my usual muscle relaxers or aspirin. Rest didn't help, nor did heat (wet or dry). What did help was skipping several doses of the cough syrup.

The interesting things with this are:

• I haven't paid any attention to salicylates. As I look through some of the substances and products that contain salicylates, I see that I am taking or applying several of them on a daily basis, some several times a day (such as green tea in bags; flaxseed oil and milkthistle; facial moisturizers and cleansers with salicylates in various forms).

• I am taking less of the syrup form of the drug (600-1200 mg/day) than I did in pill form (1200-1800 mg/day).

• At the time I took the guai tablets, my only medication was Levoxyl for hypothyroidism. Today, I take Levoxyl as well as: chlorzoxasone (day) and cyclobenzaprene (night), both muscle relaxers; and progesterone (in peanut oil, 21 days out of 27). When I started taking the syrup, I was taking acyclovir daily; I have since switched to monolaurin (a form of lauric acid, derived from coconut oil). I also take many more herbs and aminos today than I did back in 1994. I have also been pulsing thymic protein A (for NKC boosting and down-regulating RNAse-L, and cholestyramine for chronic neurotoxicity related to Lyme Disease & babesiosis.

• Of all my diagnoses, the FM has bothered me the least in the past several years. I have the lumpy-bumpies, and if I put pressure on my tenderpoints, the pain lasts for quite a while, but on a day to day basis, my CFS and MCS symptoms, hypercoagulation, chronic viral activation, babesiosis and (probably) chronic Lyme, chronic iron and cellular magnesium deficiency, orthostatic intolerance, and and overdoing things are what nail me, not the FM.

• Our chemistry changes. Things that didn't work before now do, and things that used to help now don't.

• Sometimes the effects of prescription and other substances can cause the opposite effect of what the substance normally does. For example, I used to take 5HTP to aid sleep. I went off it for a while, then went back on. When I started it again, instead of improving the quality of what little sleep I was getting, it acted as a stimulant. My doctor then recommended valerian: same thing. Ditto with kava kava. A couple of years later, my 8+ year span of only getting 1-2 hours of sleep finally ended, for reasons unknown, and I started sleeping 5-8 hours, with only very brief waking moments.

If the level of agony I'm in right now is due to the guai, perhaps the altered neurochemistry, that which resulted in the change to my sleep duration and quality, has something to do with it. Or maybe it is taking it in syrup form rather than pill form. (Then again, when I took the syrup, once or twice a year for 1-2 weeks at a stretch when battling bouts of allergy or exertion-induced bronchitis, during the years before and after the onset of CFS and FM, I never felt anything other than the loosening of the lung congestion.)

If this were easy, more doctors would be using guai with their patients, right?

March 2003 Update:
Or I could be experiencing side effects from the guaifenesin as described in Mark London's investigatory paper, The Truths and Myths of the use of Guaifenesin for Fibromyalgia. The interesting things about London's comments as they pertain to me is that I also have hypercoagulable state and orthostatic intolerance. This means that the oxygenation of my tissues and brain is low due to decreased perfusion and vessels and capillaries lined by layers of sludge. If the amount of guai I was taking was thinning my blood, thus increasing the amount of oxygen getting to tissues, that could result in pain due to the unaccustomed amount of O2 getting through. I experience something like this in the form of migraine headaches when the O2 perfusion in my brain is increased, such as by using too high a dose (for me) of nitroglycerine or having a glass wine when wearing a nitro patch (the alcohol in wine acting as a vasodilator, which also explains why I feel better generally after drinking a few glasses of wine). Then again, I was one of the 30% or so of people for whom the heparin treatment protocol for hypercoagulable state didn't work.

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