When I was in my 20s, I lived in a rental home with mold growing around the bathtub. At the time, it was more of an eyesore than a real concern. I would spray it down with bleach whenever I cleaned the bathroom, and that removed the black spots until they grew back and needed to be treated again. I cringe at my ignorance now. I didn’t realize certain molds can cause serious, debilitating chronic illness and even death in some cases.
I started experiencing my first symptoms of chronic illness while living in that home. Years later, I recognized that moldy bathtub may have been making me sick. Back then, I didn’t know certain molds produce toxic byproducts called mycotoxins, which have been associated with cancer, liver failure, kidney failure and other serious health conditions. Mold toxicity, also known as mold illness, is a common comorbidity in those with chronic Lyme disease, and it’s also been linked to fibromyalgia and ME/CFS. In one 2013 study, infectious disease specialist Joseph Brewer, MD, found 93 percent of his ME/CFS patients tested positive for one or more mold toxins in their urine. (Note: For clarity’s sake, I’ll be using mold toxicity and mold illness interchangeably in this article.)
Mold Allergy versus Toxicity
There’s a difference between a mold allergy and mold toxicity. A mold allergy causes symptoms similar to seasonal allergies and typically comes from inhaling mold spores. Mold toxicity, on the other hand, is caused by mycotoxins, which circulate in the body and trigger a flood of symptoms such as:
- Sleep issues
- Muscle, joint and neuropathic pain
- Immune dysfunction (recurring infections, frequently catching colds or flu)
- Chronic sinusitis
- Shortness of breath
- Cognitive and memory issues
- Difficulty concentrating
- Mood swings
- Light sensitivity
- Vertigo or feeling lightheaded
- Hormonal dysfunction
- Irregular periods
The Overlap Between Mold Illness and Lyme Disease Symptoms
Reading that list, it’s easy to see the incredible overlap between mold illness and Lyme disease symptoms. Because these illnesses share so many vague symptoms, some patients have undoubtedly been misdiagnosed with other conditions when the real culprit of their symptoms may be mold toxicity.
In other cases, undetected mold illness may complicate or prolong Lyme disease treatment. In a webinar, Dr. Marty Ross related the story of a patient who came to him with both mold toxicity and Lyme disease. Based on symptoms, Ross decided to focus on treating the mold toxicity first and was so successful that the patient fully recovered his health without ever addressing the Lyme infection.
According to pioneer mold researcher Ritchie Shoemaker, about 25 percent of people are predisposed to developing mold toxicity due to a genetic mutation called the human leukocyte antigen (HLA). In people with this genotype, the body doesn’t recognize toxins like mold, so they continue to circulate over and over in the body, causing long-term health issues.
Mold illness is actually a subcategory of a broader condition that Shoemaker calls chronic inflammatory response syndrome (CIRS). CIRS is identified as “an acute and chronic, systemic inflammatory response syndrome acquired following exposure to the interior environment of a water-damaged building with resident toxigenic organisms, including, but not limited to fungi, bacteria, actinomycetes and mycobacteria as well as inflammagens such as endotoxins, beta glucans, hemolysins, proteinases, mannans and possibly spirocyclic drimanes; as well as volatile organic compounds,” according to Shoemaker’s website, SurvivingMold.
Sources of Mold
Mold loves warm, damp, humid environments, so it’s not surprising it can frequently be found in the wettest or most humid parts of the home such as bathrooms, kitchens, laundry rooms, basements, and attics. Common triggers for mold growth include flooding, water pipe leaks, and roof leaks.
But many times, a mold infestation isn’t obvious. Mold can hide behind drywall, under wallpaper, in washing machines, dryers and air conditioning units, under carpeting, behind refrigerators, and in other inconspicuous places. Mold also can be ingested by eating certain foods. To complicate matters even more, not all forms of mold are visible to the human eye. That’s why testing is so important.
Every building contains some mold spores; however, not all mold is toxic to the human body. There are two primary methods for mold testing: testing the home and testing the patient. Both methods of testing come with pitfalls.
There is no highly accurate test for mold, but some are better than others. The Environmental Relative Moldiness Index (ERMI) test provides the most accurate results for home testing because it measures mold spore counts in household dust. Unfortunately, ERMI testing can be costly. When I had my own house tested a few years ago, it cost around $300 per sample.
Plate/air testing kits are also readily available through many home-improvement stores and online. These kinds of tests are more affordable than the ERMI, but are generally not considered to be very reliable.
For patients, there are both direct and indirect tests for mold toxicity. Some mold illness specialists recommend Real Time Laboratories Inc.’s mycotoxin test, which screens for 15 different toxins including aflatoxins, trichothecenes and gliotoxin. However, this test costs around $700 and is not covered by insurance, making it financially out-of-reach for many.
A good first step is to take the free online Visual Contrast Sensitivity test. Researchers aren’t sure why, but patients suffering from mold illness tend to have difficulty distinguishing between the colors of black, white and gray. Most patients with mold illness will fail the VCS test. The VCS can also be a predictor of Lyme disease, however, so it is not specific to mold.
There are also several indirect blood tests available through Labcorp and similar mainstream labs that can provide clues if mold is triggering a patient’s symptoms. These include the C4a, melanocyte stimulating hormone, transforming growth factor beta-1 tests and others.
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Some chronically ill patients may find it valuable to do a mold sabbatical, which involves leaving the home or workspace for an extended amount of time. If symptoms improve while away and deteriorate upon return, that can be a sign of the presence of mold. Testing can then be used for confirmation of mold. Genetic testing can determine if patients have the HLA mutation, but can be costly.
The first step to treatment is to completely remove the patient from the mold exposure. “If you find your home or office contains mold spores, you must find the source and get a certified specialist to properly remediate,” writes Dr. Jill Carnahan in her Complete Mold Exposure Guide. “This includes removing yourself temporarily from the environment, remediation and removal of any porous items from your abode…The prospect of having to uproot your life can seem like a nightmare, I assure you it’s essential if you want a full, healthy life.”
Any water or roof leaks or condensation issues in the home must be located and fixed. Water damaged areas need to be completely removed and treated for mold.
Mold illness treatments may include:
- Binders like cholestyramine, activated charcoal or bentonite clay to help remove the mycotoxins from the body
- A low-mold diet
- Detoxing techniques such as infrared sauna, dry brushing, Epsom salt baths, nasal irrigation and others
- Supplementing with liposomal glutathione, n-acetyl-cysteine, milk thistle, vitamin C, quercetin, glycine, alpha lipoic acid or others
- Intravenous support in the form of Meyer’s cocktails or glutathione
According to Carnahan, mold can colonize within the body’s sinuses, gut, bladder, vagina and lungs, requiring specific treatment in those areas. Even more troubling, mold can continue to live in the body even if the person is no longer exposed to a moldy environment.
It can take a year or more to remove colonized mold from the body. Ross has found prescription nose sprays of nystatin, itraconazole or amphotericin B to be helpful in eliminating mold from the sinuses and oral itraconazole for colonized mold in the intestines.
Even if someone doesn’t have full-blown mold illness, exposure to certain molds is still taxing on the body’s immune system. There are certain steps everyone can take at home or work to reduce their exposure to mold including:
- Addressing any moisture problems such as leaks or condensation immediately before mold can start to grow
- Utilizing dehumidifiers in areas prone to humidity and moisture
- Using HEPA-based air purifiers throughout the home or office to trap mold spores and improve overall air quality
- Regularly cleaning and maintaining all heating, ventilation and air-conditioning units to stop the circulation of mold spores around the home.
Additional resources and reading
The intent of this article is to serve as a general overview of the topic, but there’s much, much more to learn! If you’d like to delve deeper, I’d suggest exploring the following:
- SurvivingMold.com – Dr. Ritchie Shoemaker’s website includes information on mold illness testing, diagnosis, treatment and much more.
- BetterHealthGuy.com – Scott Forsgren has covered mold illness extensively in articles and podcasts following his own battle with toxic mold and chronic Lyme.
- DrJillCarnahan.com – Dr. Carnahan became ill after being exposed to toxic mold in a previous workspace.
- “Mold Toxin Illness & Lyme Disease” by Dr. Marty Ross
- “Mold Illness: Mold Toxins Suppress the Immune System, Trigger Chronic Disease and Inhibit Healing” by Dr. Jay Davidson
- “7 Tips to Conquer Mold Toxicity” by Dr. Peter Osborne
Mold toxicity and how to diagnose and treat it are extremely complex subjects, especially when Lyme disease is thrown in the mix.
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.
Brewer JH, Thrasher JD, Straus DC, Madison RA, Hooper D. Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome. Toxins. 2013, 5(4): 605-617. doi: 10.3390/toxins5040605