Mold is part of our world (especially in Austin, TX!).
It is inconvenient when we find it on our food.
It is irritating when it causes allergies.
It can be lifesaving when it creates an antibiotic.
But of the more than 50,000 species of mold, around 200 are known to potentially cause serious illness in humans by releasing microscopic molecules known as “mycotoxins”. And most of these mycotoxin-emitting species reside indoors (where we spend 90% of our time!).
Mycotoxin-induced illness is a rapidly emerging area of interest in environmental and integrative medicine, brought to the public’s attention via Dr. Richie Shoemaker. Unfortunately it is not yet recognized by mainstream medicine in America, primarily because there are limited research studies. Of the plethora of papers that we currently base our diagnostic and treatment approaches, 99% of these are on food, animals, or in a lab. For mainstream medicine to truly recognize this illness, we need more studies that demonstrate the effectiveness of testing methods and treatments on humans.
For now, we must rely on case studies and current expert hypotheses.
With that regard, there are very few medical practitioners and health coaches that know how to thoroughly address mycotoxin-illness. It is wonderful that we have people who have chosen the difficult path of becoming an expert in this area, given the limited information we have. But it is important to remember that these experts may be so hyper-focused on mycotoxin-illness that, in the words of one of my teachers Dr. David Haase, “the more ‘expert’ we are, the more difficult it is to see contrary information”. In other words, there is often bias that almost every symptom has mycotoxins as a common trigger.
There is a lot of information found online on this illness, which generates mostly fear and can lead to a significant expenditure of money and emotional turmoil. Thus, I felt it would be helpful to have a guide that provides common-sense education and prioritization on next best steps. That is the goal of this article. Many will not need personalized professional medical guidance if they address the content I’ve put together because, in my experience, environmental factors drive 80% of this illness – and that is where more money should be spent.
The following is based off my personal experiences with mold, both as someone who has had exposure and as a practitioner. Before proceeding, I want to point out a few key points:
- Mold allergy and mycotoxin-induced illness are two different concerns, but can overlap. True mycotoxin-induced illness often includes significant neurological, cognitive, or hormonal symptoms. Symptoms are often debilitating! Mold allergy can also be severe, but mostly encompasses fatigue, seasonal allergies, and respiratory symptoms.
- Just because a mycotoxin test is “positive” does NOT mean these are driving the CAUSE of symptoms. This is a common misperception (which I will explain below).
- Medical professionals are great at treating/interpreting human illness, but are limited in understanding testing of the buildings. Do not let a medical professional interpret an environmental test!
Here’s an overview of what I cover in this article:
- IS MOLD CAUSING ME TO FEEL BAD?
- I SUSPECT I HAVE MYCOTOXIN-INDUCED ILLNESS. DO I NEED TO GET TESTED?
- I’VE BEEN EXPOSED TO MOLD – WHAT NOW?
- HOW DO I GET RID OF MOLD?
- I DON’T KNOW IF MY HOME HAS MOLD: HOW DO I TEST FOR MOLD?
- TREATMENT OF MYCOTOXIN-INDUCED ILLNESS
- REFERENCES AND RESOURCES
IS MOLD CAUSING ME TO FEEL BAD?
Mold is everywhere, but as I noted above, it will not always cause a problem. When these cause problems, there are two general categories to be aware of:
- Immune reaction to mold, which involves allergy-like symptoms such as sinus issues, runny nose, itchy skin/eyes, asthma, shortness of breath, and more. This type can drive a histamine response (which anti-histamines can mitigate), but it can also develop into a mold allergy (which can be checked for via a blood test which can measure “IgE” values associated with specific molds). A condition known as MCAS (mast cell activation syndrome) can also be part of this reaction, but overlaps with the next reaction as well. There is still a lot that we do not know about MCAS, but most people with mycotoxin-induced illness have elements of MCAS.
- Chemical and inflammatory reaction to mold, which is when mycotoxins initiate a cytokine-driven response (aka “CIRS” or chronic inflammatory response syndrome). The symptoms of mycotoxin-induced illness vary and have no pattern, and they are not unique to this illness. They can look like other diseases, and thus be diagnosed as such (e.g. multiple sclerosis, psychosis, migraines, food allergies, etc). Some “common” symptoms include:
- Cognitive difficulties (e.g. brain fog, poor memory/concentration, anxiety)
- Pain (especially abdominal pain, but can include muscle pain similar to fibromyalgia)
- Unexplained weight gain or weight loss
- Numbness and tingling in extremities or other areas of the body
- Metallic taste in the mouth
- Vertigo or dizziness
- Tinnitus (ringing in the ears)
- Digestive issues (especially limited tolerance to food, persistent bloating)
- Significant fatigue which often interferes with daily activities
- Changes in mood (anxiety, manic depression/“bipolar”, ADHD/ADD)
- Excessive thirst and dehydration, bed-wetting in children
- Symptoms that resemble hormone imbalances (hair loss, rashes, weight changes, etc)
As you can see, it is easy to assume that mold is driving almost any symptom when there are so many potential effects. Mycotoxin-induced illness is a biologically complex illness, which you can get an idea of from this schematic (created by Dr. Shoemaker, which is a hypothesized diagram but I have found that a lot of this has been clinically accurate in my experience).
Unfortunately, mainstream medicine only recognizes that mold causes problems in the sinuses and respiratory systems. Human studies involving mycotoxins just aren’t available yet (this is because a good study costs millions of dollars, and it’s usually wise for whomever spends that money to try to get it back, i.e. pharmaceutical companies who hope to make a drug based off the information from the study!).
But before you are overcome with fear, please note that the severity of a symptom and how many symptoms are present are more important than having 2-3 of the above. I encourage you to use these self-assessment tools I put together (which is a free, no-email-required questionnaire, based off the work of experts like Dr. Shoemaker, Dr. Jill Carnahan, and Dr. Neil Nathan).
I SUSPECT I HAVE MYCOTOXIN-INDUCED ILLNESS. DO I NEED TO GET TESTED?
This is where I differ significantly from my colleagues who specialize in this area. Let me give a brief background story:
When I worked in orthopedic surgery, I would often see a painful joint that looked normal on an X-ray, or a really bad looking joint that had no pain. Then I came across a study that reminded me that tests don’t always correlate with a patient’s experience. This study involved using an MRI to test over 600 people for rotator cuff tears. What was found was that almost ¼ of those patients had a rotator cuff tear, BUT over 60% of these people did not have pain or limited mobility!
How does an orthopedic study relate to a mycotoxin illness study? Both orthopedics and functional/environmental medicine involve the use of tests. But just because a test shows a problem does not mean that it is affecting the patient.
Put in other words, just because I run a test on a patient and it shows presence of mycotoxins does not mean that those are causing problems. In fact, one independent study found that over 50% of healthy people will have mycotoxins in their urine – but that just means they have been exposed and the body is doing its job!
I have seen similar results in my clinical experience, when I worked with very ill patients who requested testing of his/her asymptomatic spouse. Over 50% of these tests would actually look worse than the sick patient’s test results!
Thus, based off the above, there is the potential that more than half of the tests that we run may not guide us well on treatment. It’s still important to address (since there are conditions such as liver cancer and Alzheimer’s that are associated with chronic mycotoxin exposure), but we really shouldn’t come to the conclusion that mycotoxins are the single cause of someone’s health concerns.
In general, here are a few things to consider, and why mycotoxin testing can be misleading:
- The testing we have available is checking for the body’s excretion of mycotoxins. Meaning, is the body getting rid of mycotoxins when/if the patient is exposed? This does not mean that someone is “diagnosed” with mycotoxin-induced illness. And it won’t tell us if the exposure was in the environment or from food.
- If a test is “negative”, what do we do? Many of the sickest patients will not excrete mycotoxins (and a “negative” test can be frustrating!).
- The tests we have available do not differentiate ENVIRONMENTAL exposure from FOOD exposure (e.g. 25% of world’s crops – especially grains, beans, peanuts, coffee – are contaminated with mycotoxins).
- The tests are expensive, and since most patients that I see are watching his/her finances, I’d rather a patient use those funds to make the environment safer (with proper testing and remediation).
All that being said, I do still order these but provide the above information to my patients. RealTime Labs is my go-to (it is one of the original testing companies). But there are also tests through Great Plains Labs and there is a newer option that is blood-based (which I have not yet used in clinical practice) from a company called My Myco Lab.
Other tests to consider include:
- VCS (Visual Contrast Sensitivity) testing. This was developed by the Department of Defense to screen soldiers for potential biotoxin exposure. It’s based off the findings that the optic nerve is affected by biotoxins, which is measurable by evaluating the eye’s ability to discern contrast. Like the urine-based test, this is not a diagnostic test. But if it is positive, it does represent a 92% chance of exposure to a biotoxin (which can include mycotoxins, Lyme, ingredients in medications, heavy metals, and more). It costs around $15, is easy to do, and can be done online.
- Organic Acids Test (OAT). This can identify potential colonization of mold with yeast species, as well as Aspergillus. It also can give nutraceutical guidance for mitochondrial support (aka a significant contributor to fatigue), detox support, neurotransmitter support (i.e. for those with mood changes, sleep issues, and gut symptoms), and more.
- Basic blood test (to look for various immune responses to mold, for example an IgE mold allergy).
- Cyrex Array 12, a blood test which looks for immune reaction to many pathogens (including molds).
I’VE BEEN EXPOSED TO MOLD – WHAT NOW?
Finding mold in your home, office, or school can be scary, especially when you are are aware of mycotoxin-induced illness. Common questions I hear include:
- “How do I get rid of mold?”
- “I used bleach to clean everything – isn’t that enough?”
- “Do I have to move?”
- “Do I need testing to see if the mycotoxins/mold are in me?”
- “Is mold on my personal belongings, and will I have to throw these out?”
It can cause a lot of stress!
Before you go down the “mold rabbit hold”, focus on safely cleaning the area before looking into human-based testing, expensive medical treatments, and throwing out most of your personal belongings. The exception, of course, is if your health is significantly affecting your quality of life. In this case, while under the care of a medical professional to rule out non-mycotoxin-causes of illness, I recommend the following:
- Get out of the environment for 1-2 weeks (ideally in a home or hotel that does not have mold!). If you are really worried about personal belongings having mold spores on them, purchase 3-5 inexpensive outfits to wear during these weeks (and don’t expose these to the current home).
- Spend at least 4 hours outside each day during this time.
- Use this time to focus on self-care and eating clean (especially with a low mold diet and consumption of cruciferous veggies like broccoli and cauliflower which have many anti-inflammatory benefits and “detox” support).
HOW DO I GET RID OF MOLD?
As I mentioned above, it is important to clean mold from any indoor building or car, but how to do this is not necessarily straight forward. The following is NOT the correct way to clean mold from a building:
- Clean with bleach and topical chemicals
- Paint over it
- Tear out and replace the moldy areas without proper isolation of the area
What is often neglected is taking into consideration how the air and the rest of the home is affected. Mold spores can often go airborne, are very sticky, and can be difficult to remove from materials such as sofas and clothes.
This is not intended to scare anyone, but it does require due diligence to minimize the risk of adverse health events. I’ve included a list of resources in the references at the end of this article, to help find someone who will remove mold the right way (aka a remediator).
A few key things to be aware of when removing mold from a building:
- Remediate a moldy area under containment (i.e. don’t let air exchange occur between the area of concern and the rest of the home)
- Use Borox solution to clean clothes and furniture (upholstered and wood in particular – especially the undersides)
- Don’t forget to have a professional IEP (see below) involved (independent from the remediation company), and make sure they check the HVAC system for mold
- Vet out the remediation company and make sure they will clean the right way. See this article for some questions to ask (and this article also lists certification companies where you can verify someone’s certification license).
I DON’T KNOW IF MY HOME HAS MOLD: HOW DO I TEST FOR MOLD?
Mold is not always visible in a building. In fact, only a few species will be visible when overgrown enough.
If you suspect mold exposure or have symptoms that suggest mycotoxin-induced illness, start with a self-evaluation of your home or car (this is a good 1-page questionnaire that will guide you) in addition to the symptom questionnaires I mentioned above. These are free and can guide on next steps.
Next, work with an Indoor Environmental Professional (IEP), who will guide you on best testing methods for your particular situation (e.g. PCR analysis vs tap testing) as well as interpret the results appropriately. These professionals have undergone extensive education to evaluate buildings, and should be certified by one of the Indoor Air Quality (IAQ) certifying organizations. See references below for guidance on finding an IEP in your area.
As I noted in the beginning, any home testing should not be interpreted by a medical professional. This is because IEP’s have a different level of understanding than a medical professional, and one of the biggest concerns I see is when my colleagues that treat mycotoxin-induced illness see any positive finding as a means to treat both the home and the patient. Not all findings indicate a problem! For example, questions the IEP can address include:
- Are those molds normal or abnormal for a building?
- Are those molds from outdoor-indoor air exchange (most molds have some part of their life cycle outside)? Remember, no home is sealed off from the outdoor air.
- Are the molds from water damage?
- Are the molds from transient exposure rather than persistent exposure?
Using a professional that has had additional training is very important! I’ve had too many patients come to see me after having spent thousands of dollars on testing of their homes and prospective homes, only to come to the conclusion that every home has toxic mold and that they were doomed!
TREATMENT OF MYCOTOXIN-INDUCED ILLNESS
At the time of writing this article, there are no universal guidelines on what constitutes a “diagnosis” of mycotoxin-induced illness, which makes it difficult to treat. Thus, I typically give a tentative diagnosis when a patient has the following:
- Symptoms and history that align with mycotoxin-induced illness (at least one of these has to be cognitive or neurological in nature) and/or
- Test results that show excretion of mycotoxins (especially if these are the same mycotoxins found in an environmental-based test).
When starting treatment, it is important to know that many practitioners use complex treatment protocols that are highly focused on supplements and ancillary treatments like intravenous therapy. These often are expensive, require patience (they can take a long time to start working), and may be too difficult to complete. But they can and will work in some patients.
In my experience, the patients that get better the fastest are those that consume less supplements and focus more on non-pill forms of treatment. I highly recommend the following:
- Address the environment first (with evaluation, remediation, moving, change jobs if mold is in the workplace, etc). No supplement will work well if there is continuous exposure. Use the aforementioned information above as a general guide. More than half of people will improve with just this step alone!
- Start on a low dose all-purpose binder such as Quicksilver’s Ultra Binder, BioBotanical’s GI Detox, or Bentonite Clay (most can be found on this online dispensary, where you can get 20% off on most products). Please note, I do not recommend starting these without discussing them with a knowledgeable healthcare practitioner first. Cautions with use include:
- Do not use if you suffer from constipation or have significant gastrointestinal issues/history.
- These can interfere with pharmaceutical treatments and must be taken at least 2 hours from any medication on an empty stomach.
- Consume a diet that is low in mold-containing foods (e.g. anything stored in large containers such as peanuts, grains, coffee, alcohol; and foods that are higher in sugar such as dairy and certain fruits), and focus on consuming plants that have antioxidant content (i.e. plants that are colorful from skin to the middle), until your symptoms improve. Add these back in slowly when ready.
- To prevent mold growth in a home/car, clean up water leaks within 24-48 hours, purchase a device to measure humidity (which should be kept under 50%), and have a high quality air filter (such as IQ Air or Enviroklenz) in areas where you spend the most time.
- Start working on the brain with psychoneuroimmunology techniques (e.g. DNRS, qEEG). This is often the most difficult to do, but the most effective (since it is usually easier to take a pill, right?!). Why does this work? The brain is composed of nerves, and mycotoxins are neurotoxins (i.e. they affect how the brain controls the rest of the body).
There are many other tools we can use in treatment, but the above are what I recommend to all my patients with suspected mycotoxin-induced illness. Anything else needs to be customized.
We will always be exposed to some form of mold.
Some will have allergy-based symptoms due to immune sensitivity, and others will have symptoms that are due to inflammation triggered by mycotoxins. Unfortunately, mainstream medicine in America only recognizes the former, since there is no universally agreed-upon way to diagnose and treat mycotoxin-induced illness.
When someone has numerous symptoms that are not improving, often with tests that show no abnormalities, it is important to consider mycotoxins as a potential contributor. Mood changes (e.g. new onset anxiety/depression), neurological issues (e.g. neuropathy, migraines, pain), and digestive issues (e.g. reacting to many foods, abdominal pain) are the most common symptoms I see in those with mycotoxin-induced illness, but most of these symptoms can also be attributed to another more common illness. A questionnaire to review the home and severity of symptoms will help guide on next steps, and initial treatment should be focused on addressing the indoor environment, including:
- Use an IEP to assess the building (and interpret building test results!)
- Never let a medical professional (even myself!) interpret a test if he/she has not physically been in the building that was tested. The IEP should do this.
- All mold likes wet environments, so history of water leaks, HVAC systems, and high humidity in the home will increase the likelihood of mold growth.
- Remember that most molds are not visible to the human eye.
- Contained remediation is key, and is best done by someone that is certified to do so safely.
- Keep indoor humidity below 50%. A meter like this is low cost and can help with evaluation.
- Use a good quality air filter after remediation (indoor air is often dirtier than outdoor air, thanks to all the materials our personal belongings are made of!).
Just starting with the environment will help most people feel better if mold is truly perpetuating ongoing illness – and it often is a good learning experience that highlights the importance of our environment on our health! For example, when I was exposed to mold, I learned about the importance of HVAC system maintenance and always hitting “drain” in an “eco-friendly” dishwasher!
For those who are ill, there will be questions, frustrations, “ebb and flow” of symptoms – but trust the process. Get out of the exposure, start with consuming a low-mold diet and high antioxidant foods, consider using a binder, and retrain the part of the brain that gets turned on by these mycotoxins leading to an near constant state of “fight or flight”. It can take 6+ months to improve, but like I tell many of my patients: focus on the wins and positive changes, no matter how small they may seem!
There is no one-size-fits-all “protocol”, and my approach is not heavy on use of supplements (most patients with significant inflammation from mycotoxins cannot absorb many supplements at first). In my experience, those who recover quicker follow the above (with regards to environmental exposure), and use a treatment approach that includes mind-body therapies. If you need help and guidance, starting in January 2021 I’m joining the team at Parsley Health, which provides care in over 47 states as of December 2020! I can work with patients in Texas and Florida, and will be adding additional states in the future. All practitioners at Parsley Health collaborate, so most can help with mycotoxin/CIRS illness.
The information contained in this article is for educational purposes only. It does not constitute a diagnosis or prescription for treatment. Please consult a licensed competent medical professional before starting any of the above recommendations. I highly recommend that if you have any neurological or psychiatric symptoms that you seek evaluation by a specialist.
References and Resources
- Biotoxin pathway by Dr. Richie Shoemaker
- Study on prevalence of symptomatic and asymptomatic rotator cuff tears in the general population (2013 study): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3768248/
- Study that found that mold is found in low amounts in those that are healthy (2019)
- Mycotoxins found in 25% of the world’s crops: https://www.tandfonline.com/doi/full/10.1080/10408398.2019.1658570
- Human-based testing companies:
- Study on vision deficits in those with biotoxin-associated illness (2005)
- Study on VCS-equivalent test: Visual Evoked Potentials (VEP) in environmental health (1993)
- Remediation resources (for finding those who know how to properly remove mold from a building):
- Your Definitive Mold Clean Up Guide (good tips, but don’t necessarily have to do everything if your health symptoms are not significant!)
- Mold History Questionnaire on the Home
- Article that discusses how to do the tap test
- How to find an Indoor Environmental Professional
- Low mold diet by Dr. Jill Carnahan
- Indoor Air Filters
- DNRS (Dynamic Neural Retraining System)