Mold & ME/CFS

Mold

Many thanks to Nathan Horek, ND, Katie Kraning, and Ruby Tam, DO putting together this page to help answer some of your questions about mold.

1) Why is mold a concern?

Molds are useful to break down dead leaves and organic matter in nature, such that the debris can be used as nutrients. However, molds release very tiny spores and microbial volatile organic compounds causing a foul smell. These travel in air. Some people may be asymptomatic, while others with hypersensitivity, airway diseases or immunocompromised states can develop allergic reactions from mold exposure to fungal infection inside the body. A damp and warm environment, along with availability of organic matter, e.g. wood, favors mold spores to grow. Many houses had prior water damages that are not visible.

2) What are symptoms of mold toxicity?

Symptoms of mold toxicity are broad, cover a wide range of the body, and are unique to each person. Dr. Jill Crista’s book, Break the Mold and Dr. Neil Nathan’s books Mold and Mycotoxins or Toxic are the best resources for outlining mold toxicity symptoms. In Break the Mold, Dr. Crista writes that “mold causes symptoms in many areas of the body. Every individual is affected by mold differently. Some people are extremely sensitive, and some people aren’t. Symptoms of mold exposure are wide-reaching, can be vague, [and] rarely exist alone.” This is why it is important to slowly and methodically work through information about the health of both your body and the environment you are exposed to (home, office, school) with the assistance of a qualified health care provider. This can be very complicated and too much to do on one’s own. Dr. Crista goes on to state that “mold symptoms don’t fit into a tidy checklist that applies to all people. It works better to look at a summation of symptoms. The more mold symptoms we check off, the more confidence we have in the diagnosis of mold sickness. There is no single symptom that confirms mold sickness.”

In Mold and Mycotoxins Dr. Nathan puts it similarly: “Patients with this problem may experience a surprisingly wide range of symptoms related to many different organ systems. When this confusing array of symptoms is taken out of context or not understood as representing the many manifestations of biotoxicity, it is easy to see how both patients and their physicians might mistakenly think that this is all ‘in their heads.”

Dr. Crista writes that almost all people with mold sickness have anxiety that may also be described as feeling internally unsettled, uneasy, overwhelmed, stressed out, or sometimes even a strong sense of impending doom. Dr. Nathan emphasizes electric shock sensations, ice pick-like pains and vibrating or pulsing sensations running up and down the spinal cord as being symptoms that are specific to mold toxicity. There are two key points here to consider:

There is not widespread agreement on specific symptoms that indicate mold toxicity, and
A certain set of symptoms can point to investigating if mold toxicity is the cause.

Diagnosing and treating mold toxicity is a complicated clinical process that requires a thorough investigation. Certain symptoms may point in that direction but do not necessarily indicate mold toxicity by themselves.

It is also important to note that many of these symptoms may be caused by, or related to, another factor or condition. Just because you may have one or more of these symptoms, does not mean you are or have been exposed to mycotoxin/biotoxin. Every case is patient specific.

The following list is potentially a place to start. Further investigation, including working with a provider, would be warranted if mold exposure is suspected to be a part of your chronic illness. Please investigate the resources cited below. This is not a complete list. Dr. Crista states herself that a complete list is “impossible” because of the complexity of the illness. A good place to start is Dr. Crista’s Mold Questionnaire at the beginning of her book. This can also be found on her website drcrista.com.

Here is an incomplete list compiled from the books listed above:

A. Pain:

Muscle aches and cramps, joint pain, unusual pains (ice pick or lightning bolt), headaches, abdominal pain, chest pain, etc.

B. General:

Fatigue, appetite swings, weight gain, mood swings, depression, anxiousness, night sweats, temperature dysregulation, metallic taste in mouth, excessive thirst, etc..

C. Eyes, Ears, Nose and Throat:

Sensitive to bright light, blurred vision, tearing, sneezing, runny nose, post-nasal drip, chronic sinus congestion, nasal polyps, bumps at the back of the throat, swollen lymph nodes, allergies, hay fever, ear popping, ringing in the ears, hearing loss, dry eyes, irritated eyes, etc..

D. Respiratory System:

Shortness of breath, wheezing, asthma, chronic dry cough, burning lungs, heaviness in chest, sensitive to fragrances, colds go to the lungs easily, chronic respiratory illnesses, blood-stained sputum, smoke and exhaust sensitivity, aspergillosis, etc..

E. Digestive System:

Appetite changes, nausea, irritable bowels, diarrhea/constipation, vomiting, cyclical vomiting syndrome, bloating, ulcers, food sensitivities, sweet cravings, etc..

F. Circulatory System:

Many spider veins, cherry angiomas, easy bruising, easy bleeding, iron-deficiency anemia, varicose veins, Raynaud’s phenomenon, irregular heartbeat, low or reactive blood pressure, atriovenous malformation.

G. Skin:

Sensitive skin, sensitive to light touch, itchy skin, burning sensation, flushing, sensitivity to sunlight, skin rash, peeling or sloughing skin, fungal infections, etc..

H. Brain:

Brain fog, confusion, slowed thinking, memory loss, trouble finding the right word, dementia, etc..

I. Nervous System:

Numbness, tingling, weakness, incoordination, dizziness/vertigo, migraine, slow reflexes, dysautonomia, insomnia, neuropathies, tremors, seizures, daytime sleepiness, difficulty with balance and walking, sensitive to static electric shocks, etc..

J. Urinary System:

Frequent urination, irritable bladder, blood in urine, kidney inflammation, etc.

K. Immune System:

Increased susceptibility to infection, long-lasting colds, viral infections become bacterial, chronic mono or EBV, frequent Herpes outbreaks, increased susceptibility to cancer, etc.

L. Reproductive System:

Changes to menstrual cycle (abnormal bleeding), infertility in both genders, vaginal yeast or bacterial infections, jock itch, impotence, etc.

3) Can the Perrin technique help with symptoms related to mold exposure?

The Perrin Technique is a gentle lymphatic drainage treatment to move waste and toxins from the lymph in the body and brain back to the bloodstream to be processed by the liver. While this technique does not treat mold toxicity, it helps decrease the inflammation caused by mold exposure, and hence may alleviate the symptoms one experiences.

4) How to test for mold toxicity in one's own body?

Understanding mold toxicity in a patient is a complicated clinical process. Testing may be helpful and offer clarity. However, be aware that testing may not be completely clear. There is still some debate amongst providers as to the best method. It is helpful to work with a qualified health care provider that can take all information into consideration, in addition to any test results.

There are two options for testing: urinary mycotoxins and serum mycotoxin antibody testing.

A. Urinary Mycotoxins:

RealTime labs offers a urinary mycotoxin test that tests for 16 different mycotoxins, including ochratoxin A, trichothecenes and gliotoxin, via ELISA. The sample tested is urine. The lab provides a test kit with all necessary components, including some paperwork. The patient collects the urine at home, transfers it to a tube the lab provides and the sample is shipped back to the lab via UPS. The cost is $399 for the first test and $259 for follow up testing. The turnaround time is 10 days. While there are a few other labs now offering urinary mycotoxin testing, RealTime has been specializing in this test the longest (since 2005).

Keep in mind that this is testing for the presence of toxin as it is exiting the body in the way the body is supposed to eliminate toxins. If the body has absorbed the toxin but is not eliminating it well, it may not show up in this test. As a result, some providers do not rely on this test clinically. I find this to be helpful information alongside a thorough history and physical exam, especially to aid in exploring whether or not exposure is occurring (at home, work, etc.). This test can be thought of as a potential screening tool for current or recent exposure.

B. Serum Mycotoxin Antibody Testing:

MyMycoLab offers a serum mycotoxin antibody test. The cost is $380. A kit is shipped to the patient. A blood draw is required and the sample is shipped back to the lab.

Of note, IgG tests for colonization and/or past exposure, whereas IgE identifies acute mold exposure and/or colonization impacting MCAS.

5) Good tests to use for dwellings?

(the following list of testing is based on personal experiences, and not a complete list)

There is no one single perfect test for looking for mold toxicity in buildings. Testing the home/office/school requires a number of different methods. Any professional investigating the presence of mold should use a variety of methods, including visual inspection, in order to determine the presence of mold/biogrowth. It is also important to note that the species of mold matters. Some species are toxic in very small/any amount. Others are toxic only in higher amounts. Consult with a professional that investigates indoor air quality and a variety of testing measures. The vast majority of mold, fire and water damage restoration businesses and extremely insufficient in their inspection and testing.

Here are some testing methods that can be used, in combination, to look for mold/biogrowth in your home:

InstaScope: The instascope uses a wand connected to a tablet to measure particles in the air and record various information found in the air. It assesses the number of particles, the particle size, and additional information about the particles, such as if they are biological or non-biological. It is portable and provides answers in real-time. It is an assessment tool of indoor air quality, of which mold spores and mycotoxins are one component. A laser particulate meter will provide similar, but less comprehensive, information.
Air Sampling: Air sampling is used to trap mold spores which can then be sent to a lab to analyze the amount and type of mold found. Analysis is done looking for spores and other particulates under optical microscopy.
Swab Sampling: Swab sampling may be done for microscopic examination of mold elements (fungal spores, structures, hyphae and other particulates).
ATP Testing: ATP testing may be done to measure the levels of ATP on a particular surface. ATP is produced by all living cells. Measuring ATP allows one to look at the presence of microorganisms on a surface. This includes fungi (mold) and bacteria, though mold is the most likely biogrowth.
Thermal Imaging Camera: Thermal imaging can be used to determine areas of moisture in a home. This also may reveal air transfer at seals of exterior doors or windows.
Moisture Meter: A moisture meter helps detect elevated levels of moisture present in building materials. Where moisture accumulates or is trapped, mold often follows.
Visual inspection: A visual inspection can be a part of a mold inspection to look for signs of biogrowth, water/moisture accumulation or past evidence of water damage such as staining on natural wood or bubbling of paint.

6) Simple measures to do at home

Here are some simple tips to keep molds to a minimum.

Keep the humidity of your home under 50% all day, using a dehumidifier or air-conditioner in humid environments.
Clean up and dry your home immediately (24 to 48 hours) after a flood.
Check for and fix any water leaks in your home.
Use mold-killing cleaning products and apply mold inhibitors to walls before painting. Do NOT use bleach on suspected mold. It will spread the spores.

7) What to look for when you want to hire a professional to remedy a mold problem at your home?

How do they isolate the work area and clean up the area afterwards?
How do they protect their employees properly?
Use common sense. Do not proceed if things do not sound right.
Do not use the mold testing companies to do the remedial work because of a conflict of interests
Hire someone to do a more thorough job. Do not hire someone just do one small job, such as cleans the air ducts or spray some chemicals in your home.
Consider hiring multiple inspections from different companies for your own thoroughness and to protect integrity of the inspection.

Resources

Indoor Air Quality Professionals in Minnesota:

Pure Breathing Solutions: purebreathingsolutions.com
- Seems to be the most thorough and comprehensive in Minnesota
Green Home Solutions of the Twin Cities: greenhomesolutions.com/twin-cities-mn
- Seems to be a step below Pure Breathing but much better than typical “fire-water-mold restoration companies. Will use a variety of the above testing methods, except InstaScope (uses laser particulate meter instead).
ProCare Services, Inc.: procaremn.com
- Mold and indoor air quality inspection. Primarily uses InstaScope, not sure if any other testing methods.

References

“Why is mold growing in my home?”, United States Environmental Protection Agency, https://www.epa.gov/mold/why-mold-growing-my-home
“Black Mold”, Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/24862-black-mold
Crista, L. (2018). Break the Mold: 5 Tools to Conquer Mold and Take Back your Health. Wellness Ink Pub.
Nathan, N. (2022). Mold and Mycotoxins: Current Evaluation and Treatment 2022. BookBaby.
Nathan, N. (2018). TOXIC Heal Your Body from Lyme Disease, Multi Chemical Sensitivities, and Chronic Environmental Illnesses. Penguin Random House.
RealTime Laboratories, RealTimeLab.com, https://realtimelab.com/product/mycotoxin-test/, accessed 02/04/2025
MyMycoLab, MyMycoLab.com, https://mymycolab.com, accessed 02/04/2025
U.S. Centers for Disease Control and Prevention, https://www.cdc.gov/mold-health/about/index.html

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