Testing for exposure to mold/mould/mycotoxins

Hutan · Feb 14, 2022

A recent paper reported on two tests for mycotoxins (toxins produced by fungal species) that patients of Nova Southeastern University’s (NSU) Institute of Neuro-Immune Medicine (INIM) clinic in Florida had been asked to do. The clinic is prescribing treatments (glutathione and charcoal) on the basis of these tests.

Mycotoxin testing from RealTime Laboratories was conducted using the enzyme- linked immunosorbent assay (ELISA) technique with antigen–antibody reactions to detect the presence of specific mycotoxins in the urine samples.
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Mycotoxin Testing from The Great Plains Laboratory
Urinalysis of mycotoxins from GPL was conducted using a technique that combined advanced mass spectrometry with liquid chromatography. In addition, a creatinine cor- rection was applied to the urinalysis to minimize variations across samples for differences in total body water, fluid intake, and urine osmolality.
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I thought it would be useful to have a look at the science behind tests for mycotoxins.

Hutan · Feb 14, 2022

Another source (Merritt Wellness Centre, which seems to have its own conflicts of interest) says

The majority of healthy and unhealthy people test positive for mycotoxins in their urine — some research says up to 99%. This is because we have them in so many of our foods, but our bodies are designed to naturally eliminate toxins through urine, stool and sweat. Only when ingesting very high levels of moldy food can it make people sick
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The urinary tests are not even able to show the presence of mycotoxins in all people from a moldy house. I had a family with a moldy house that required removal of three walls from floor to ceiling because of a perpetually flooded crawlspace. The husband and wife were told by their lawyer (not a doctor) to get a urinary mycotoxin test, because that is what many mold practitioners incorrectly promote as a diagnostic for mold illness. The husband tested positive and the wife, who was also very sick, did not show any on her test. If this simple test can accurately diagnose mold illness, why would only one of the two very sick people in that household have a positive urine test? It’s highly unlikely that two people exposed to the same conditions and with very similar symptoms would have different results if a urine test for mycotoxins is accurate and valid. Consider the possibility that the wife’s body was less effective at eliminating mycotoxins, because of her dysregulated immune system caused by CIRS, while the husband was still able to clear some of the toxins in his urine.
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Why exactly aren’t urine mycotoxin tests reliable? In 2014, the CDC put out a statement that the use of urine mycotoxin tests is unvalidated for the clinical diagnosis of illness, and that still holds true today. They have a whole web page just for that. Government approved laboratories hold Clinical Laboratory Improvement Amendments (CLIA) certifications. CLIA regulations require the laboratory to meet specific quality and analytical standards to ensure accurate and reliable test results. However, CLIA regulations do not address the clinical validity of the test. That requires the approval of the FDA, and there is no FDA-approved test for mycotoxins in human urine. The only FDA-related part of the test is the use of a standardized parts-per-billion (ppb) format for the results. Mycotoxin levels that predict disease have not been established.
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Hutan · Feb 14, 2022

The link in the Merritt Wellness Center page goes to a pretty interesting CDC article with references, copied below:
The takeaways do indeed seem to be that

at the time of writing, there was no FDA-approved diagnostic test for mycotoxins in human urine

mycotoxins are found in the urine of healthy people, and low levels of mycotoxins in food are common

Notes from the Field: Use of Unvalidated Urine Mycotoxin Tests for the Clinical Diagnosis of Illness — United States, 2014
February 20, 2015 / 64(06);157-158

Melody Kawamoto, MD1, Elena Page, MD1 (Author affiliations at end of text)

In February 2014, CDC's National Institute for Occupational Safety and Health received a request for a health hazard evaluation from a union representative in an office building. A female employee reported the onset of symptoms involving multiple organ systems upon returning to work after a prolonged absence. The employee searched the Internet for descriptions of symptoms matching hers, found a laboratory offering "toxic mold testing" direct to consumers, and submitted a urine sample, despite the absence of musty odors and signs of fungal growth in her office. The laboratory reported "positive" concentrations of two mycotoxins: ochratoxin at 2.8 parts per billion (ppb) and tricothecenes at 0.4 ppb. The laboratory cutoff for "positive" was ≥2.0 ppb for ochratoxin and ≥0.2 ppb for tricothecenes. The interpretation accompanying the laboratory report said the results "revealed that you have an unusual level of that mycotoxin(s) present in your body."

The laboratory referred the employee to a clinic specializing in "medical treatment for mold exposure and mold illness," where she was examined, diagnosed with mold toxicity, and prescribed an antifungal medication. Antifungal medications are used to treat fungal infections, not illnesses caused by toxins produced by fungi. Also prescribed were dietary modification (eating only canned chicken and white rice for 3 days) and several nonstandard medical treatments (e.g., bowel evacuation or hydrocolonic irrigation, cupping therapy, and ionic nasal spray).

Two consultants, one hired by the building manager and one by the employee, carried out destructive testing (removal of drywall, carpet, and ceiling tiles) in the employee's office. No evidence of water damage or significant fungal growth was found. The cost to the building manager exceeded $25,000. The employee remained convinced that mold exposure occurred in the workplace. Some coworkers, aware of the destructive testing and the urine mycotoxin testing, began to attribute nonspecific symptoms to workplace mold exposures.

The laboratory mentioned its Clinical Laboratory Improvement Amendments (CLIA) certification on its reports and noted that the urine mycotoxin testing was not approved by the Food and Drug Administration (FDA). CLIA regulations require any laboratory that performs testing on patient specimens to have an appropriate CLIA certificate and to meet applicable quality and analytic standards to ensure accurate and reliable test results.* CLIA regulations, however, do not address the clinical validity of testing (i.e., the accuracy with which the test identifies, measures, or predicts a patient's clinical status).† FDA clearance or approval of a test provides assurance that the test has adequate analytical and clinical validation and that it is safe and effective.§ There is no FDA-approved test for mycotoxins in human urine.

During the past 10 years, CDC's National Institute for Occupational Safety and Health has received many requests for workplace evaluations based on the results of unvalidated laboratory tests purported to diagnose occupational and environmental illnesses caused by exposure to fungi (including molds). Using unvalidated laboratory tests to diagnose work-related illness can lead to misinformation and fear in the workplace; incorrect diagnoses; unnecessary, inappropriate, and potentially harmful medical interventions; and unnecessary or inappropriate environmental and occupational evaluations (1,2).

Mycotoxins are metabolites of some fungi that can cause illness in humans and animals, primarily after ingestion of contaminated foods. Low levels of mycotoxins are found in many foods; therefore, mycotoxins are found in the urine of healthy persons (3,4). Mycotoxin levels that predict disease have not been established. Urine mycotoxin tests are not approved by FDA for accuracy or for clinical use.

CDC does not recommend biologic testing of persons who work or live in water-damaged buildings nor routine environmental sampling for mold (5,6). To identify possible mold contamination, visual inspection is the first step. To inspect the interior of walls and other difficult-to-examine spaces, a borescope can be inserted through a small hole. Moisture meters can measure moisture in building materials such as carpet, wallboard, wood, brick, and concrete. Identification and elimination of sources of moisture and cleaning or replacement of contaminated materials is essential.

Persons using direct-to-consumer laboratory tests that have not been approved by FDA for diagnostic purposes and their health care providers need to understand that these tests might not be valid or clinically useful. Additional information about molds and their health effects is available at http://www.cdc.gov/mold/faqs.htm#mold
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I'm definitely not arguing that a mouldy house is healthy, or that inhaled mycotoxins can't cause disease. I'm open to the possibility of mycotoxins playing some part in the onset of ME/CFS. But, so far, I haven't seen much to suggest that these tests for mycotoxins in urine are useful in determining treatments for people with ME/CFS symptoms.

mariovitali · Feb 14, 2022

@Hutan

The majority of healthy and unhealthy people test positive for mycotoxins in their urine — some research says up to 99%. This is because we have them in so many of our foods, but our bodies are designed to naturally eliminate toxins through urine, stool and sweat. Only when ingesting very high levels of moldy food can it make people sick
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Using a custom-made information extraction tool i submitted a query of mycotoxin-associated keywords in order to get a ranked result of medical topics related to ME/CFS research. Here are the results :

DAMP = "damage-associated molecular patterns" is the most highly ranked medical topic given the query

We see that detoxification is ranked highly (detoxification is needed per @Hutan post above) . Of special note : Many concepts related to Liver Injury and Liver-related concepts are there as well. Liver is the most important thing when detoxification is concerned.

Ash · Feb 15, 2022

Me my dad and nephew all have breathing issues around moulds as well as fungal spores especially open soils and woodland. Damp buildings are bad for everyone though.

So I absolutely know mould is a massive problem for health. But most of us can’t go and live in the desert. Also I’ve heard the dust can be health issue there.
Mainly I guess the problem is more often a failure to account for climate than purely the climate itself. The badly built badly maintained homes that many of us can’t afford to escape from. I would like to move to a sandy soil seaside area but that’s also logistically outside mine and many of us’s reach at moment.

From what I can tell it’s quite difficult to extract practical and reliable medical information from someone trying to sell you something. Also even management endeavours that seem reasonable and sensible are actually difficult to achieve or sustain given the pervasiveness of this stuff in a damp country. I also don’t enjoy learning about the known and potential harms when they seem so challenging to counter.

But if we could find out through reliable testing and then use well evidenced treatments that would offer far more than we have now in potential recovery terms.

Thanks for making the thread. I will check back in later for all ya updates.

Barry · Feb 14, 2022

Mould is certainly something I have wondered about, as we lived in a house with significant mould in the bedroom for a fair while.

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Testing for exposure to mold/mould/mycotoxins

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