Most people are unaware exposure to mold can cause serious illness. Even worse, most physicians are not familiar with mold illness or its associated symptoms, so it is rarely considered as a diagnosis. If mold is suspected, a physician may test the patient for mold allergies – or suggest they have allergies to some inhalant – but mold illness is much more. Symptoms of mold exposure are very similar to Lyme disease, and it is not uncommon for these conditions to occur simultaneously.
Someone can test positive for mold allergies and experience mold toxicity at the same time. However, in mold toxicity, systemic immune dysregulation, and subsequent inflammation are the underlying features that drive symptoms.
Sources of Mold Exposure
Extensive studies have estimated about half of the homes in the United States have water damage and mold growth. The U.S. Environmental Protection Agency has surveyed 100 representative government and commercial office buildings and found 45% had current leaks, and 85% had evidence of past water damage.
Within 48 hours of dampness or water intrusion pathogens begin to grow. All that is needed for mold growth to occur is dampness and any plant-based material such as wood, paper, wallpaper, drywall, ceiling tiles, dust, and more. Mold growth will continue if there is moisture and may be why some people’s symptoms worsen during the winter and spring. For mold remediation to be successful, it is critical to find the source of water or dampness and accurately correct the leak.
Mycotoxins spread throughout the house just like smoke does when something is burning on the stove.
Increased Risk for Mold Growth
Buildings with flat roofs or basements, or that are built on hillsides or in shaded areas are at increased risk for mold growth. HVAC systems are also a significant source of mold growth, especially when ducting is in a basement. In addition, water damage can come from a leaking roof, pipe, or appliance such as a dishwasher, refrigerator, or wash machine. Buildings that are poorly maintained are much more susceptible to mold growth. Government buildings and schools, as well as rental apartments and homes tend to be poorly maintained.
There are also circumstances when water damage to a home or building is apparent. A patient shared a story of a wall caving in under the pressure of a paint roller because the sheetrock was so damp from water damage. Others have reported discovering mold growing on a wall after removing a bed or a picture (mold grows where there is no light). I have seen patients who were exposed to mold in their car and at their place of work.
The mold exposure that causes illness can be current or in the past. In past exposures, people can continue to have elevated mycotoxins (the toxins produced by mold) long after leaving a moldy environment.
However, most of the time, my patients are unaware they have been exposed to mold until they get tested. The mold exposure that causes illness can be current or in the past. In past exposures, people can continue to have elevated mycotoxins (the toxins produced by mold) long after leaving a moldy environment. Once diagnosed with elevated mycotoxins, people may recall the rental house they lived in years prior when their health began to decline always had a musty odor. How about the dorm the college student lived in where the air conditioning unit was on all the time? When did their health decline?
Is all Mold Toxic?
Mold is not the only pathogen that grows from water damage. Fungal fragments, spores, mycotoxins, bacteria, mycobacteria, actinomycetes, VOC’s, and other biotoxins can also form in damp buildings. These pathogens combine to produce a toxic soup that can lead to a multi-systemic and multi-symptomatic illness. Not all mold is toxic, but many mold species produce mycotoxins.
It is the indoor concentration of mycotoxins and the rest of the toxic soup that can contribute to chronic debilitating symptoms.
Mold Toxicity and Lyme Disease
I first learned of mold illness at a well-attended Lyme disease conference. I remember thinking, “why is there a physician presenting on mold at a Lyme conference?” At the end of the presentation, the answer became obvious – mold illness causes a lot of the same symptoms as Lyme disease. Both trigger systemic inflammation and immune dysregulation leading to symptoms such as fatigue, brain fog, headaches, joint pain, and anxiety.
In my experience, when tick-borne infections and mold toxicity are both present, the mold illness must be addressed before the tick-borne infection(s) can be treated successfully. Mycotoxins suppress the immune system making it next to impossible to successfully treat Lyme disease and co-infections.
Symptoms of Mold Exposure
Dr. Ritchie Shoemaker can be credited for creating awareness around mold illness. He described the pathological process associated with mold exposure as chronic inflammatory response syndrome, or CIRS.
The symptoms caused by mold toxicity are due to chronic inflammation and oxidative damage that adversely affects the structure and function of various organs and tissues in the body.
The symptoms of mold illness are:
- Psychiatric – anxiety, fear, panic attacks, mood swings, irritability, anger, OCD, reduced ability to cope with stress, hallucinations, and suicidal thoughts
- Cognitive – decreased short-term memory, difficulty concentrating, difficulty learning new information, word-finding difficulty, reduced ability to plan and execute, lack of motivation, brain fog, and Alzheimer’s dementia
- Musculoskeletal – muscle aches, sharp shooting pain, joint pain, morning stiffness
- Fatigue and chronic fatigue syndrome
- Respiratory – shortness of breath, chronic cough, sinus congestion, nasal drip
- Neurological – headaches, migraines, vertigo, seizures, burning along the spine, sensitivity to light, sensitivity to touch, numbness and tingling, sense of internal vibration
- Digestive – abdominal pain, diarrhea, appetite swings, nausea
- Eye tearing and itching
- Multiple chemical sensitivity (MCS) and EMF sensitivity
- Mold can trigger mast cell activation syndrome (MCAS), leading to the myriad of symptoms associated with MCAS
Common misdiagnosis of mold illness is chronic fatigue syndrome, rheumatoid arthritis, fibromyalgia, Alzheimer’s dementia, and respiratory disorders like asthma.
Given the broad range of symptoms caused by mold toxicity, you can see why many physicians miss this diagnosis unless they have had specialty training in mold illness.
Proper Testing for Mold Illness
Physicians that specialize in mold illness have narrowed in on tests that are most effective in determining if mold is an underlying cause of someone’s symptoms. Before considering laboratory tests, there is often a clinical suspicion someone may be suffering from mold toxicity.
When a person is experiencing any of the above symptoms – and no other diagnosis that explains these symptoms is made – a diagnosis of mold illness needs consideration. There is also the circumstance when someone has another diagnosis such as Lyme disease, but treatments have not been effective in resolving symptoms.
Urine Mycotoxin Testing
The only test that evaluates for mold toxins is a urine mycotoxin test. Great Plains Laboratory and Real Time Laboratory are the two labs that are most commonly used by physicians treating mold toxicity. The two labs use different testing methodologies and test for different mycotoxins, so it is hard to compare results from each lab.
To get an accurate urine sample for mycotoxin testing, use one of the following methods before collection. Note – if you are on a binder (see below under treatments) such as cholestyramine or charcoal, you need to discontinue the binder for three days before collection.
Preparation for urine mycotoxin testing
- Take oral liposomal glutathione 500 mg twice per day for five days, then collect the urine the 6th morning
- Receive intravenous glutathione 2000 mg once, then collect the urine the following morning
- Sit in a sauna for 20 minutes, then collect the first-morning urine the next morning.
*Caution – symptoms can flare from these provoking therapies since they mobilize mycotoxins. If this happens, stop the treatment and collect the next urine for the test.
The limitation with urine mycotoxin tests is the test only reflects the mycotoxins the body releases in that particular urine sample. After treating mold illness for some time, it is not uncommon for mycotoxin results to be higher on follow-up testing than were reported on the first test. The increased levels are often related to the body eliminating mycotoxins more effectively, but could also be from an additional mold exposure.
Urine mycotoxin testing helps determine when treatment for mold toxicity can be stopped. When mycotoxin levels have declined into a normal range, it indicates the mold treatment has been effective.
CIRS Markers Helpful in Diagnosing Mold Illness
In his work researching laboratory markers associated with CIRS, Dr. Shoemaker identified inflammatory markers and hormones that are affected when a person is exposed to mold. Unfortunately, none of the markers are specific to mold illness, so need to be taken in context with someone’s medical history, current symptoms, and urine mycotoxin results. The CIRS lab tests that are most helpful are C4a and TGF-beta 1.
C4a is an inflammatory protein that can be triggered by particular microbes, including mycotoxins from mold and the bacteria that causes Lyme disease. Collecting the C4a specimen requires special handling where the blood needs to be frozen soon after collection and during transportation to the central laboratory. National Jewish Laboratory in Denver, CO, is the preferred lab to test C4a. Some Quest Diagnostics and BioReference laboratory draw centers can send samples to National Jewish Labs.
Transforming Growth Factor Beta-1 (TGF-Beta 1) is a cytokine that influences other immune cells. When TGF-Beta 1 is elevated, it increases the risk of autoimmunity, causes neurological damage, and is associated with lung disease. Like C4a, TGF-Beta 1 blood samples need to be performed at a special lab. Cambridge Biomedical in Boston, MA is the preferred lab for TGF-Beta 1. The normal reference range is <2382 pg/mL, and anything higher indicates a pathological process is driving this cytokine. Some Quest Diagnostics draw centers will send TGF-Beta 1 samples to Cambridge Biomedical.
Many physicians who treat mold-related illness have concluded that the other CIRS markers are less relevant for diagnosing mold toxicity. Lab tests such as VIP, ADH, MSH, and HLA DR/DQ genotype do not seem to correlate with mold illness so are not helpful in the diagnostic workup.
Effective Treatment for Mold Toxicity
The first – and most important – step in treating mold illness is to remove any current exposure to mold. This critical step is also the most difficult because it requires ensuring there is no mold in your home, workplace, or any other location you spend a significant amount of time.
Get Your Home Tested Properly
Proper mold inspection requires hiring an experienced Indoor Environmental Professional (IEP) that uses various testing techniques to ensure there has not been water damage leading to mold growth in your home. When someone is sick in the household, the degree of mold testing needs to be more comprehensive than if someone was doing a general home inspection. I have witnessed mold inspectors miss water damage and mold growth in patients’ homes because they did not do a thorough investigation, or used the wrong testing methods.
Proper testing for mold helps to establish the scope of work (SOW) for remediation. It is a conflict of interest to hire an inspector who also does remediation. However, most reputable inspectors can recommend remediators they trust.
To find a certified IEP in your area, visit www.acac.org and look for CIEC and CMC certifications. You will also find certified remediators with CMRS and CMR designation.
Treatments for mold Illness
Prescription medications and supplements – referred to as binders – are used to reduce the mycotoxin burden in the body. Technically these compounds do not bind mycotoxins, but they adsorb like static cling. Mycotoxins are secreted with bile from the gallbladder into the intestines. Mycotoxins adhere to binders in the intestines and then excreted through the stool.
Symptoms can flare when a binder mobilizes mycotoxins. When detoxification pathways are supported, and inflammation reduced, adverse reactions from binders are reduced.
Cholestyramine is a prescription binder that has historically been used to treat high cholesterol. When taken on an empty stomach, cholestyramine binds toxins (including mycotoxins) for removal. Unfortunately, the manufactured cholestyramine available at traditional pharmacies contains sugar or aspartame – ingredients people with mold illness should avoid. It is best to have pure cholestyramine compounded at a compounding pharmacy. The full dose is one scoop (4 grams) up to four times per day. Sensitive patients may need to start at 1/8 or ¼ scoop once per day and gradually increase the dose as tolerated.
For treating mold toxicity, all the binders listed here need to be taken on an empty stomach at least 30 minutes before or 2 hours after meals. Binders are taken an hour before and two hours after other supplements and medications. Extended-release medications – especially mood-stabilizing medications – require extra time.
Welchol is another prescription medication that was used to treat high cholesterol when taken with food. It also binds mycotoxins on an empty stomach. Welchol can be taken up to two tablets twice per day.
The two supplements that are most commonly used to reduce mycotoxin levels in the body are charcoal and clay. Charcoal needs to be dosed at 2000 mg twice per day. One serving of clay is taken twice per day.
It is essential that binders be taken at least twice per day (once someone can tolerate that frequency). When taken a minimum of twice per day, binders are more effective at reducing the mycotoxin burden in tissues. It can be challenging to find time to take binders on an empty stomach, especially when taking other supplements and medications. Patients can take a dose of a binder in the middle of the night if they wake to go to the bathroom.
Glutathione is an Important Treatment in Mold Toxicity
Glutathione is a compound produced by our body and is a powerful antioxidant, supports immune system function, and promotes detoxification. Mold exposure and elevated TGF-Beta 1 deplete glutathione.
One of the most effective compounds to aid the body in removing mycotoxins is glutathione.
Some people have genetic variations in glutathione genes that interfere with glutathione production. These people tend to feel worse around toxicant exposures, which may play a role in why some people feel sick when exposed to mold, and others do not.
Glutathione can be administered intravenously or orally. A liposomal form of glutathione is essential for absorption when taken orally. A typical oral dose of liposomal glutathione is 450mgone to two times per day.
Reducing the Inflammatory Response in Mold Toxicity
Exposure to mold triggers chronic inflammation and oxidative damage in the body. In addition to removing mycotoxins with binders and through detoxification, the other critical steps are repairing the inflammatory response and oxidative damage.
Some therapies have been shown to reduce the inflammatory cytokines that increase in the presence of mycotoxins. Below are some treatments that have proven to be effective in my practice or have demonstrated success in research studies.
- Low-dose naltrexone (LDN)
- Phosphatidyl choline
- Green tea (EGCG)
- Transfer Factors Enviro
Don’t let Mold Interfere with Your Ability to Recover from Your Illness
Mold is everywhere in the environment. The indoor exposure to toxic mold can trigger an inflammatory response that causes multiple symptoms in multiple systems in the body. This makes it difficult to diagnose. Rarely do physicians look for an environmental cause to illness so they do not ask patients about possible environmental exposures like mold.
One of the greatest rewards of identifying mold as the cause of someone’s symptoms is it can benefit others who may also be exposed in that environment. If you suspect mold toxicity as a cause of your symptoms, find a physician who specializes in mold illness so you can get properly tested.