Mold and mycotoxin illness

How do you know if mold is making you sick?

By Kim Crawford, M.D. Last updated: March 24, 2023
How do you know if mold is making you sick?

Mold and mycotoxins-what’s the story?

You may know that mold can cause allergic reactions such as a runny nose, itchy eyes, and even asthma. You also may know that’s it’s not a good idea to have mold in your home and that visible mold should be cleaned up. However, you may not know that toxins from live or dead mold spores (mixed with “other things”) can make you sick with a disease called Chronic Inflammatory Response Syndrome (CIRS). If you have a multi-system, multi-symptom illness and have seen more than your fair share of doctors who have given you one different diagnosis after another, you might have CIRS. But how can you sort it all out? How do you know if mold is making you sick?

  • How do you know if mold is making you sick?
  • Where and how are you being exposed?
  • Why isn’t everyone getting sick like me?
  • Exactly why am I feeling so sick?
  • How can I tell if a building is “sick”?
  • How can I tell if it’s the mold mycotoxins that are making me sick?
  • How can I get better?

How do you know if mold is making you sick?

Allergic disease is fairly specific, causing itchy eyes, runny and stuffed up nose and sinuses, coughing, asthma, and skin rashes. Most people who develop allergies to varies types of fungus do not develop CIRS due to their genetics. More on this to come. So- if you are self-diagnosing to find the proper Functional doctor, what kinds of symptoms should make you suspicious?

People often report that they are experiencing extreme fatigue and feel like they’ve been sick “forever” with no good explanation. Of course, this doesn’t mean that all cases of chronic fatigue are due to CIRS, but a good number of them certainly are. Twenty-two other common symptoms include:

  1. Brain fog
  2. Difficulty concentrating
  3. Headaches
  4. Memory problems
  5. Mood swings
  6. Anxiety
  7. Depression
  8. Weakness
  9. Muscle aches
  10. Unexplained pain
  11. Fibromyalgia
  12. Light sensitivity
  13. Chronic cough
  14. Shortness of breath
  15. Vertigo
  16. Metallic taste in the mouth
  17. Static shocks
  18. Inability to regulate temperature
  19. Digestive issues such as bloating, diarrhea, or constipation
  20. Excessive thirst and frequent urination
  21. Hormonal issues
  22. Blurry vision

If you recognize yourself in this list of symptoms and have had “regular doctors” tell you that you have Chronic Fatigue, Fibromyalgia, a “bad” menopause, or worse, it’s “all in your head,” please know that regular doctors have not learned about CIRS and that you need to look for doctors who specialize in mold illness. These doctors are all Functional Medicine doctors such as myself, and many of us have had CIRS, making us quite empathetic to what you’re experiencing.

Where are you getting exposed to mold? And it is just the mold?

Even the cleanest homes have many routes where moisture can be trapped inside. This is especially so in any home located in a high-humidity environment with either a vented attic or a basement. In addition, if a home has experienced flooding, it’s bound to have issues. According to several studies, it is estimated that approximately 50% of all buildings in the U.S, including homes, have moisture problems and, thereby have mold issues. Yes, 50%!

Mold illness is on the rise in our country due to several factors. We make our homes, offices, and schools out of materials perfect for mold growth. Wood and drywall are essentially just paper, and when they get wet, they don’t dry easily. Add water, and this creates a petri dish for mold proliferation. We also construct buildings “more tightly,” allowing for less re-circulated air. Then there’s the increased flooding problem. And it’s not just the mold per se.

Biological contaminants which thrive in damp indoor environments include gram-negative and positive bacteria, endotoxins (aka lipopolysaccharides, or LPS; cell wall components of gram-negative bacteria), beta-glucans (a diverse group of polysaccharides), hemolysins (exotoxins produced by bacteria capable of destroying cells), inflammagens (irritants that cause inflammation and edema), microbial and non-microbial volatile organic compounds (VOCs), and mold mycotoxins. This “mycotoxin mixture” is what triggers the symptoms of CIRS. And yes, the mycotoxins (toxins produced by toxic mold species) are the most noxious element, driving the symptoms.

Hundreds of sub-species of indoor molds/fungi produce by-products called mycotoxins. Mycotoxins are microscopic proteins that disperse throughout your body via your lungs and can wreak absolute havoc. Some mycotoxins are listed among the most toxic substances found in existence.  They are so damaging that they have been used as chemical warfare agents.

Mycotoxins are so small; they can pass through cell membranes, making it more difficult for your immune system to identify, attack, and remove them. For some people (more to come on this), it’s absolutely impossible. Therefore, mold illness usually starts with one or two low-level symptoms that increase in number and intensity over the months and even years. Years of untreated illness can become suddenly or insidiously debilitating. And always remember- dead mold spores and fragments contain mycotoxins, so if you’ve had a remediation company tell you that “there is no more mold here, all clear, no problem”—guess what—there still is an enormous problem.

Why doesn’t everyone get sick from mold mycotoxins?

Let’s discuss how we detoxify our bodies naturally. We sweat; through our skin, flush some toxins out via our urine, and use the liver and GI tract to do most of the “heavy lifting” when it comes to detoxification. Our overall “toxic burden” is determined by two important factors: how well our innate detoxification system works and the levels of toxins we’re exposed to. If we have a high level of toxin exposure and our detoxification system is compromised due to environmental factors, genetic predisposition, or both, we’ll have a high toxic load that will produce unpleasant symptoms. When we’re talking about mold illness, genes matter.

It has been estimated that approximately 25% of people have human leukocyte antigen (HLA) genes that prevent their bodies from being able to recognize and thus eliminate what are called biotoxins. Mold or mycotoxin illness is the biotoxin we’re discussing here, but chronic Lyme and blue-green algae can also trigger the same symptoms as we’re discussing in this article. In addition, certain bacteria (probably including Borrelia, Babesia, Bartonella, and other organisms transmitted by tick bites) can also secrete biotoxin-like compounds that produce symptoms of waxing and waning inflammation.

All biotoxins remain in the body and trigger a chronic, systemic inflammatory response; hence, the name is CIRS. A quick but important fact regarding CIRS: Multiple Antibiotic Resistant Coagulase Negative Staphylococci (MARCoNS) are found in the nasal passages of a large percentage of patients. Notable is that this biofilm-producing organism will not clear without proper overall treatment and will conversely inhibit recovery from biotoxin illness.

Why DO the mold mycotoxins make you feel so sick?

The interference with the sirtuin enzymatic pathways causes numerous metabolic issues and physical symptoms. For example, SIRT1 issues lead to decreased NAD levels, which is the primary cause of fatigue. In addition, SIRT pathway issues lead to glucose and cholesterol abnormalities and many more complex biochemical abnormalities. At the beginning of this illness, occasionally, all that is noticed are lab abnormalities, leading to resistance from some people who “just don’t want to deal with the problem.”  But this decision is to their peril, as they cannot detox “on their own,” even in a toxin-free environment, and symptoms (as well as diseases) will eventually occur.

The constant, ongoing inflammation caused by mycotoxins can lead to the following, caused by inflammatory cytokine release:

  • Gut hyper-permeability-AKA “leaky gut” which then leads to gastrointestinal symptoms, as well as a breach in the gut-brain barrier; causing all sorts of “brain issues.”
  • These cytokine-induced brain issues can involve the anterior pituitary (“hormone problems”) or the posterior pituitary (low endorphin=pain issues and/or ADH=thirst and urination issues). Brain issues also often involve the hypothalamus (temperature dysregulation) and neurotransmitter dysfunction leading to depression and/or anxiety issues. Headache is a common system, as is brain fog, difficulty concentrating, and difficulty with memory. Frontal lobe involvement creates lapses in judgment, thought to be responsible for the phenomenon of wanting to ignore the problem.
  • Increased cytokine levels attract inflammatory white blood cells, restricting blood flow and reducing oxygen in the tissues. As a result, vascular endothelial growth factor (VEGF), which normally stimulates the formation of blood vessels, is reduced. Reduced VEGF can result in worsened fatigue as well as debilitating nocturnal muscle cramps.
  • A reduced level of Vasoactive Intestinal Peptide (VIP) can cause shortness of breath and even wheezing, mimicking asthma. It even can cause pulmonary hypertension and eventually heart failure!

The body also suffers from low MSH (melanocyte-stimulating hormone) production for a variety of reasons. MSH is made by the “middle” pituitary gland, hypothalamus, and skin cells. Low MSH results from this inflammatory process but is also exacerbated by the biofilm secreted by the MARCoNS organism discussed above, which cleaves intact MSH, worsening this whole vicious cycle. The low MSH is additionally thought to trigger the entire innate inflammatory response (leading to high TGFB1 and MMP9 innate immune markers) and causes severe sleep issues, immune system dysfunction (infections), chronic pain, and gut malabsorption.

Low MSH further decreases posterior pituitary production of ADH (anti-diuretic hormone), causing some patients to experience excessive thirst and urination and low blood pressure, and the sensation of electric shocks from excess salt on their skin; causing a “battery cell” phenomenon. And yes, their “regular doctors” think these symptoms are totally “in their heads” but it’s not!

People with certain HLA genotypes may develop other inappropriate immune responses, including the formation of auto-antibodies that lead to thyroiditis such as Hashimoto’s disease, gluten sensitivity or Celiac disease, Inflammatory bowel disease such as Ulcerative colitis or Crohn’s disease, blood clotting conditions, neurological conditions such as Multiple Sclerosis and more.

Continued immune dysregulation can also create other problems such as mast cell activation syndrome (basically resulting in a massively overactive histamine=allergic response), all sort of food intolerances, and then multiple chemical sensitivities. There is even rather strong evidence that CIRS from mold mycotoxins causes EMF sensitivity!

How to diagnose the problematic building(s)

If you smell a musty odor in (for instance) a damp basement, that’s the waste products of live mold until proven otherwise. If you have had water intrusion from a storm or a leaky pipe that wasn’t cleaned up within 48 hours, you probably have mold growth. Places to check include behind toilets, refrigerators and around windows, doors, in attics (under the insulation), in HVAC systems, and in the basement. You don’t have the tools to check for mold growth behind walls, under floors, and so on, so where should you start if you suspect your home has live or dead (toxin-containing spores!) mold?

The best method to do a quick screening for mold is the ERMI test. The ERMI test uses mold-specific quantitative polymerase chain reaction (MSQPCR) technology to identify mold DNA in dust that has settled in buildings.

The test, developed by the EPA and validated in many well-done studies (with some cited in the references section) compares the relative “moldiness” of a home compared to a group of reference homes that do not have mold. Thirty-six species of mold are divided into 26 species of (generally toxin-producing) molds associated with water-damaged buildings (Group 1 on your ERMI report) and 10 common species which are not associated with water-damaged buildings (Group 2 on your report).

The mold or ERMI index in a particular building is the sum of the logs of Group 1 minus the sum of the logs of Group 2. After you get your report, one of the doctors who specialize in mold illness (such as myself) will be able to guide you through the interpretation of your report, and make suggestions regarding inspection, remediation, and post-remediation fogging, which is a crucial step to rid your home of dead mold spores and mycotoxins. If you have not yet secured a doctor and want to proceed on your own, I wouldn’t recommend doing so, but let me give you this advice, so you don’t waste money on non-qualified “home mold remediation experts.”

If you suspect live mold, you need a qualified inspector to check “everywhere.”  You need an indoor environmental professional who is certified to do what he is doing. You need to make sure that the company that diagnoses the problem is not the same company that fixes (remediates) the problem. Here is a guide for you to use to choose a good company. If you are one of my patients in the area, I highly recommend ORC Services.

To emphasize, your best bet is to enlist the help of a mold-literate Functional doctor early on if you suspect that mold is making you or other family members sick. And again, no matter how good your remediation company is, remember, they don’t treat mycotoxin illness; they are tasked with killing the live mold in your dwelling, and that’s it. They won’t check for dead mold spores because they don’t generally use a fogging solution which is formulated to deal with this issue. Please remember this, and know that getting rid of the live mold is the first, but not final step in getting your environment mycotoxin-free. Also, remember that moving furniture, clothing, or other belongings into a “clean space” will cross-contaminate that clean space.

What tests do I need to tell if mold mycotoxins are making me sick?

The first test you should do is a Functional Visual Acuity Test; a visual test that detects not visual acuity but rather the ability of your optic nerves to detect subtle differences in gray-and-white contract. This test is also known as the visual contrast sensitivity (VCS) test. Mold mycotoxins are inhaled up the nose where-in CIRS patients, they will interfere with optic nerve blood flow. A VCS test is ideally performed in the office of a CIRS-literate Functional doctor. However, there are two online versions that can be used as a starting place. The one I find most useful is the VCS on the website of the doctor who first discovered CIRS; Dr. Ritchie Shoemaker.

The VCS test which is available on Dr. Shoemaker’s website, Surviving Mold, costs $15. This online test uses a scoring algorithm to determine the likelihood that a patient is being adversely affected by mold mycotoxin exposure.

This VCS test is so accurate that, if it is positive, meaning that you “fail” in one or both eyes, there is a ninety-two percent chance that you have active CIRS. However, a negative test does not rule out CIRS, and there are occasionally “false positives.” This is another reason that you absolutely cannot diagnose and treat yourself, as suggested by a few misguided social media groups.

If you are in a toxic home, have a positive VCS test, or simply have a host of seemingly un-related symptoms , you need special laboratory testing done. A good place to start is with an MSH, TGFbeta1, MMP9, and HLA analysis, and then other tests if certain symptoms are present.

The basics of CIRS Treatment 

Job one is to make sure you are in a non-toxic environment. Detoxing you or trying to clear your MARCoNS while you’re in a toxin-filled environment is like trying to take water out of a bathtub which is filled to the top–with a teaspoon–while the water is still running. Makes sense? Suggestions including renting a place to live during remediation, renting a mobile home, pitching a nice tent if the weather is nice, or walling off the area being remediated, if physically possible. This last option is what everyone wants to do, but unfortunately, mold is often cross-contaminated throughout a home, even if it started in one location. At any rate, this is something to discuss with your doctor.

Air filtration units are a good idea, but don’t think that they are a substitute for remediation and then post-remediation fogging. We have IQAir units in our personal home. We have the IQAir Healthpro plus units that are super-effective to filter particles all the way down to 0.003 microns- smaller than dead mold spore fragments. Get them from a dealer so you’ll have a valid warranty; the guaranteed efficacy is over 99.5%!

Make sure that you find a CIRS-literate M.D. who understands the physiology of the disease and doesn’t “simply detox you” or you’ll be waiting a long time for more energy, a good night’s sleep, pain relief and other symptomatic relief. You are going to need inflammation quelled, your leaky gut fixed, and your brain functions repaired right off the bat.   A minority of doctors know how to do this, but I most certainly do.  

A typical regimen includes peptides to repair leaky gut, damaged neurons (brain cells) and nicotinamide mononucleotide (or IV or troche-based NAD) to improve energy. Hormonal imbalances, pain issues, and insomnia need to be addressed as well. A good detoxification regimen starts with making sure that the organs and biochemical processes of detoxification are in working order. This often means boosting methylation systems, liver, GI and kidney functions. Most people are able to sweat, so we take advantage of this by recommending saunas; if someone can gain ready access to one. If not, we rely on oral detox preparations, which contain Vitamin C, glutathione plus charcoal, and other GI-friendly (non-cholestyramine) fibrous “binders.”  We get rid of the MARCoNS with a silver-EDTA spray, not with antibiotic spray, which can further damage the gut.

Hopefully, this article has been helpful. If you’d like to have a free phone consultation with me about your particular situation, just contact me, and I’ll help.

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