Why Fibromyalgia Patients Should Consider Mold Toxicity as a Cause of Their Illness

Published: October 17, 2017

— By Neil Nathan MD

Mold Toxicity in Fibromyalgia

Mold toxins create a profound inflammatory reaction within the body that looks almost identical to fibromyalgia.

In fact, in 2013, Dr. Joseph Brewer, an Infectious Disease specialist from Kansas City, published his research showing that of 112 patients with fibromyalgia and chronic fatigue syndrome who had not responded to his usual treatment program, 92% of them tested positive in a urine test for mycotoxins (mold toxins). Happily, he then demonstrated in two subsequent papers using 100 consecutive patients for each, that 89% and 94% of those patients were markedly improved or cured by treating their mold toxicity.

I hope that this got your attention, because it certainly did mine.

Mold toxins set off a chain of biochemical reactions which have been brilliantly described by Dr. Ritchie Shoemaker in 2005, in a process which he terms the Biotoxin Pathway. These reactions are primarily inflammatory in nature, and are now referred to as CIRS (Chronic Inflammatory Response Syndrome). This profound inflammation triggers the symptoms of chronic fatigue, insomnia, migratory joint and muscle pains, cognitive dysfunction, migraines, irritable bowel syndrome and interstitial cystitis, which are all the classical symptoms of fibromyalgia. So, it is not much of a leap to wonder, in any given patient, whether their fibromyalgia actually represents mold toxicity.

In addition to the classical fibromyalgia symptoms noted above, mold toxicity also may present with the following symptoms which are a bit more unique:

  • Numbness and tingling in various parts of the body
  • Intense anxiety and/or depression
  • Muscle weakness
  • Increased sensitivity to light, sound, touch and chemicals (and EMFs)
  • Chronic nausea with vomiting
  • Persistent diarrhea
  • Unusual neurological presentations including dyskinesias and pseudoseizures
  • Chronic sinusitis
  • Shortness of breath, chest pain and/or "air hunger"
  • Temperature dysregulation
  • Palpitations

For patients who have the diagnosis of fibromyalgia who are not improving as they might expect with treatment, or those who have many of these unique symptoms, it behooves us to consider the possibility of mold toxicity as an important diagnostic option.

How Do We Make the Diagnosis of Mold Toxicity?

The simplest and most accurate test is a urine test for mold toxins (mycotoxins) from the RealTime Laboratory. Two other laboratories now offer the test, but it is not clear that their results are as accurate or reproducible. The test measures four of the main families of mycotoxins that cause illness, namely ochratoxin, aflatoxin, tricothecene and gliotoxins. A positive test not only nails down the diagnosis, but also serves as a blueprint of how to treat it. (The different mycotoxins are treated somewhat differently.)  One of the important concepts to understand with mold toxicity is that the toxins interfere with the body's innate ability to excrete those toxins. What this means is that this test may not accurately reflect the toxic load unless we use some means of provocation to help the body excrete toxin as we prepare to collect the urine specimen. The current ideal way to collect the urine is to take 500 mg of liposomal glutathione twice a day for a week, and on the 7th day, just before the urine is collected, to do either a sauna or hot bath to promote sweating and to collect the urine 30 minutes after getting out of the sauna or bath. Elevated levels of mycotoxin make the diagnosis.

Other tests can be helpful, but are not as specific as the direct measurement of mycotoxins in the urine. Dr. Shoemaker has outlined a series of blood tests including c4a, TGF-beta-1, MSG, VEGF, and VIP which point towards this diagnosis, and also utilizes the Visual Contrast Test as additional confirmation (available on line through Dr. Shoemaker's website, www.survivingmold.com).

How Do We Treat Mold Toxicity?

There are three major principles of treatment. The first, although obvious, may be quite difficult. The patient must get out of a moldy environment if they are exposed at work, home, or in their car. Testing these environments is important, and can be done by professionals (I suggest  using professionals who do not have a vested interest in remediation since that may skew their recommendations), or with mold plates or ERMI technology. Many homes can be successfully remediated, but some patients have had great difficulty getting their home environment to be safe, and have had to move, and, even more difficult, let go of their prized possessions, especially papers and photographs which can be moldy. Transporting moldy belongings to a new home does not work out well.

Second, the patient needs to take specific binders, which are materials designed to bind the specific mycotoxins we find on their urine tests. This is a very important value of the urine test, as it allows us to be specific about which toxins to treat, in which order. For example, cholestyramine is a great binder for ochratoxin, but does not work nearly as well for the other mycotoxins. The treatment of mold toxicity is not straightforward or easy. Every component of treatment carries the risk that we will mobilize mold toxins faster than the patient can excrete them, making them worse for periods of time ranging from days to weeks. The dosing of both binders and antifungals (described below) requires a lot of "tweaking" and it is critical not to overmedicate. This is one of those times that if some is good, more is NOT better. Trying to force oneself through toxicity in the mistaken concept that this will speed up treatment does not work, in fact can make patients much sicker for long periods of time. Please find a health care practitioner knowledgeable about treatment and stick with it.

Third, Dr. Brewer and others have made it clear that for most of our mold toxic patients, over time, mold actually colonizes inside their bodies, particularly in the intestinal tract and sinus areas, and even if a patient leaves their moldy environment, that alone will no longer cure them because they are still making mold toxin in their body. This requires the use of nasal and oral antifungal medications to eradicate the mold (and often candida as well).

About 25% of all of us are susceptible to mold toxicity, genetically, and about 75% of us are not. That confuses many families and workplaces, since some folks who are exposed to the same environment may feel fine, and others may be really ill. There is nothing psychogenic about mold toxicity.

It is beyond the scope of this article to go into treatment in detail. I encourage interested readers to read my new e-book, Mold and Mycotoxins; Current Evaluation and Treatment, 2016, or for more information to view a whole-day seminar I did last summer on Mold and Mycotoxins professionally videotaped and available through Vimeo. You can easily access it through my website, where there are links to archived podcasts that I did on my radio show "The Cutting Edge of Health and Wellness Today" (my gracious co-host for the first six months of those podcasts was Dr. T) particularly shows with Dr. Shoemaker and Dr. Brewer.

I want to emphasize the good news: mold toxicity is treatable. It requires patience and persistence since it usually takes a year or more to completely remove mold toxin from the body. A few lucky patients will find that they will improve more quickly and start to feel better rapidly. Most will not improve until the majority of toxin is gone. The initial test from RealTime is unfortunately quite expensive ($700, covered by MediCare only) but worth it. Subsequent tests are $250 and should be repeated about every 4 months during treatment.

The vast majority of my patients get well, meaning "cured." They will remain more sensitive to mold exposure in their environment, but not in the disabling way in which they present. We are still learning about how to optimize treatment and do not have all the answers. Our testing is not perfect (there are other mold toxins we cannot test for) but should improve in a few years as we develop better technologies.

Again, I want to restate the take-home message here: If you have fibromyalgia and are not improving as you would hope, or if you have some of the unique symptoms noted above, please ask your health care provider to test you for mold toxicity. If you have it and don't treat it, you will not get well. Also, although this sounds straightforward, there are many complicating medical conditions which are triggered by mold toxicity, such as MCS (Multiple Chemical Sensitivity), mast cell activation and porphyria which require additional treatments from trained health care professionals. While these conditions will usually resolve with treatment for mold toxicity, they may interfere with successful treatment unless they are addressed.

Dr. Nathan is available, through his website at www.neilnathanmd.com, for phone consultations and encourages all interested readers to avail themselves of the resources noted in this discussion.

Jacob Teitelbaum, MD

is one of the world's leading integrative medical authorities on fibromyalgia and chronic fatigue. He is the lead author of eight research studies on their effective treatments, and has published numerous health & wellness books, including the bestseller on fibromyalgia From Fatigued to Fantastic! and The Fatigue and Fibromyalgia Solution. His newest book (June 10, 2024) is You Can Heal From Long COVID. Dr. Teitelbaum is one of the most frequently quoted fibromyalgia experts in the world and appears often as a guest on news and talk shows nationwide including Good Morning America, The Dr. Oz Show, Oprah & Friends, CNN, and Fox News Health.

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