Five Battlegrounds in the ‘Mold Wars’ Debate

Battleground 1: Diagnosing CIRS

The controversy begins with how we actually diagnose a person with CIRS. CIRS is a complex disease, and so is the diagnosis process. But diagnosis will invariably require lab tests. Which tests should we rely on to identify exposure to a mold-based biotoxin? There are two major camps on this question of testing.

Camp One: Urine Testing

Urine mycotoxin testing simply looks for signs of mold in the urine. However, most molds found in urine come from food, not the environment. Most toxins that are inhaled, in contrast, are detoxified through the liver and bile. So if you’ve eaten something contaminated with mold, say some moldy cheese or bread, it might show up in this kind of urine testing. However, inhaled mycotoxins from your environment would not be identified in this kind of testing.

Another issue with urine mold testing is that some people are better at detoxifying than others. One person who eats some moldy corn, might efficiently excrete it through their urine. In this case, we might see lots of mold in the urine, but it simply means that they are great at detoxifying it, not that they have CIRS. In contrast, if a urine mold test result is normal, it could just be a case of someone who is not effective at detoxifying and is actually very sick with mold-related illness. In order for that person to detoxify, they would have to chelate it or boost detoxification in some way — for example with sauna use or dry brushing.

There are too many variables in urine mold toxin testing to make it reasonably accurate.

Camp Two: Blood Testing

In blood testing, we’re not actually looking for mold toxins. Instead, it gives us a picture of the response of the immune system. This is important because, in reality, mold is everywhere. All of us are exposed to mold nearly every day — whether it be in our homes, offices, walking outside near leaves and trees, or eating it in our food.

The issue is not whether someone is exposed to mold. The question is: What does your immune system do when it is exposed to mycotoxins? This is what blood testing seeks to answer.

Blood testing for mold-related illness looks for biomarkers in the blood instead of for the mold itself. This method looks for evidence of an upregulated, abnormal immune system and seeks to answer the question: Is the immune system dysregulated?

These tests evaluate your regulatory brain — your hypothalamus and pituitary gland. They also look for dysregulation in your innate immune system, which is the most immature part of your nervous system. A dysregulation in the innate immune system is actually a case definition for serious chronic inflammatory response syndrome (CIRS).

Blood Testing for the Win

Which method of testing is the most effective? Urine mycotoxin testing only reflects exposure, primarily from food, while blood testing seeks the status of your immune system and brain’s response to the exposure to toxins.

Blood testing for inflammatory markers and immune system dysregulation is a better way to diagnose mold-related biotoxin illness (CIRS) than urine mycotoxin testing.

Battleground 2: Is Mold the Primary Culprit?

The next battleground in the Mold Wars is, well… mold. Many practitioners focus on mold as the source of CIRS, but it might surprise you to hear that most cases of CIRS aren’t actually caused by mold.

Water-Damaged Buildings

We know that 80% of chronic inflammatory response syndrome is related to water damaged-buildings (WDBs). Of the CIRS cases related to water-damaged buildings, 80% of those are actually NOT due to mold toxins. You read that correctly — 80% of the cases of CIRS caused by water-damaged buildings are NOT caused by mold.

80% of the cases of CIRS caused by water-damaged buildings are NOT caused by mold.

These other causes of CIRS include micro particulates such as endotoxins and actinomyces. Endotoxins, also referred to lipopolysaccharides, are found in the coating of gram-negative bacteria. These can grow in furniture, carpet, or other places in buildings where a lot of humidity is present. Endotoxins need water to form. Actinomyces on the other hand, are a soil-based organism and typically comes from crawl spaces.

When testing for mold spores, for every one mold spore, there are about 500 particulates. These particulates can cause a lot of lung inflammation. Because the lung lining is so extensive — roughly the size of a tennis court – exposure to these micro particulates in the lungs can cause tremendous inflammation and wreak havoc on the immune system.

Other Causes of CIRS

If only 80% of CIRS is related to water-damaged buildings, what about the other 20%? In these cases, there can be many and varied causes including:

• Pfiesteria – an organism that can contaminate food
• Ciguatera fish poisoning
• Tick bite
• A recluse spider bite
• Vaccine-related illnesses
• Silica exposure (from breast implants)
• Traumatic brain injuries

In extreme case, over-exercising to the extreme, which can result in leaky gut, can bring on a chronic inflammatory response from repetitive overtraining.

Verdict: CIRS is Not Just Caused by Mold

So you can see that less than 20% of CIRS is related specifically to mold itself. The reality is that mold toxins are a small part of CIRS or biotoxin-related illness that we commonly call mold-related illness.

We talked about the limitations of urine mycotoxin testing last week. As you can see, this is yet another limitation. If you’re testing only for mold, in light of all of these other causes, you’re missing the boat. This is another reason that evaluating immune system regulation using blood tests is so important.

Battleground 3: Testing Your Home When You Have CIRS

How can you test your environment for mold or other harmful particulates?
How do you know if the air in your home is contributing to your illness?

Camp One: Spore Counters

In this third battleground, we’ll begin with the camp that tests by counting spores. These testing methods involve using plates that collect mold spores from the air. The problem with this method is that it only identifies the very worst cases of actual mold contamination. What do I mean by that?

As I mentioned above, for every one spore in the air, there are over 500 particulates. So even if there are no spores collected on the plate, there could still be many harmful particulates present in the air. Let’s also remember that most of CIRS is not actually caused by mold to begin with. Spore plates don’t test for endotoxins, actinomyces, or VOCs which are also problematic and don’t give an accurate picture of the health of the environment.

Since spore plates only pick up the very worst cases of mold in the environment, they are very inaccurate when it comes to environmental testing for CIRS.

Camp Two: ERMI & HERTSMI-2 Tests

On the other side, we have an ERMI (Environmental Relative Moldiness Index) test. This test evaluates the environment for DNA using Polymerase Chain Reaction (PCR) technology. That sounds complicated, but what it means is that it is super sensitive; if an ERMI test is normal, you know your environment is safe.

However, the problem with these tests is that they’re sometimes too sensitive. Using an ERMI, even after a remediation, it can come back positive. For example, after full remediation following a water damage event, there can still be micro particulates in carpet, on furniture, or on walls. Without throwing away your furniture, tearing up the carpet, and repainting the walls, the ERMI test can still come back positive.

The more accurate method of testing your environment involves using a test called a HERTSMI-2, along with the addition of tests that evaluate actinomyces and endotoxins. HERTSMI, which tests dust samples in a building, stands for Health Effects Roster of Type-Specific Formers of Mycotoxins and Inflammagens. That sounds complicated, but it’s a test that is very sensitive and also gives a better view of mold along with other particulates that can be problematic in water-damaged buildings.

However, even with this test for both molds and some other micro particulates, there are other chemicals and toxins, such as formaldehydes and fire retardants, that can contribute to CIRS.

Camp Three: Bring in the Professionals

So what’s my response? Where do I fall in this battleground in which people vehemently disagree? Over the course of my career, I’ve learned that it’s most effective to start with an indoor environmental professional (IEP) who can evaluate your home. A professional can look inside your air handler at the coils, can check your ductwork, and can evaluate your crawlspace. They can find issues that you had no idea were there.

One of my patients learned from an IEP that their home was not correctly wrapped with Tyvek – in fact it was not wrapped at all. This very nice home didn’t have any protective barrier from the elements. There were humidity issues throughout the entire house, which resulted in microparticles growing and being distributed all over the home. She couldn’t see the mold, and it took an indoor environmental professional to discover the missing Tyvek.

Other patients have had issues with vapors from chemicals in their garage from paints and solvents, for example. Each time the door to an attached garage is opened, air from the garage is pulled into the home because of the Bernoulli effect. Heat rises in our homes and is vented out. When we open the door, air rushes in to replace it – like a vacuum. Air from a garage or crawlspace can be particularly problematic due to chemicals stored in a garage or particulates in a crawlspace.

My IEP told me about one of his clients that had masonite siding installed incorrectly, which led to the siding absorbing water. All of the siding – their entire house – was encased in mold, but you couldn’t see it from the outside. Without the help of an indoor environmental professional, they would have never figured that out.

I’ve Moved Into the Indoor Environmental Professional’s Camp

These are just a few examples of the many reasons that I recommend having a professional come look at your home to evaluate what’s going on with your environment, crawlspace, humidity, moisture, etc.

So, over my career, I’ve moved away from recommending lots of indoor testing. Now I usually recommend having an indoor environmental professional come and evaluate the home as a first step when CIRS is diagnosed.

For offices and workspaces, it can be more difficult to get your employer to use an IEP and to pay for that, so sometimes in that case it can be better to do testing like a HERTSMI-2.

Battleground 4: Treating CIRS

The next battleground in the mold wars involves the treatment of CIRS. The entire treatment process is typically referred to as the “Shoemaker Protocol.” I have outlined that twelve-step process in a separate article.

In this section, I want to focus on two treatment strategies:

• Binders
• Lipid Therapy

Binders

Binders are a critical step in the addressing any biotoxin-based illness, like CIRS. It’s easy to get overwhelmed by the daunting 12-step process that doctors like me typically recommend for treating CIRS. I get it—lots of confusing words. But the first two steps are straightforward:

1. Remove yourself from ongoing exposure (mold and water-damaged buildings).
2. Use a “binder” to remove any existing biotoxin in your body.

All of the other steps are intended to address the complex chain reaction in your body responding to the biotoxin. But the two primary steps are removing yourself from ongoing exposure and removing the existing biotoxin in your body. That’s what binders do. “Binders” are any substances (whether pharmaceutical or natural) that bind with the toxin so that it can be safely excreted from your body.

Pharmaceutical Binders

Cholestyramine is the binder with the most evidence and track record, according to Dr. Shoemaker’s protocol. Another similar medication is called WelChol (colesevelam). These are two medications that are made to bind bile, and are also used to treat high cholesterol. I’ve used them in my career to treat various conditions such as C. diff, colitis, and other gut-related and diarrhea issues, especially with people who struggle with diarrhea after having their gallbladder removed. These drugs have been used for mold toxicity since the late 90s.

Cholestyramine and WelChol are the most effective binders. However (and this is a big however) many pharmaceuticals include lots of other chemicals as ingredients. Some formulas of cholestyramine contain artificial sweeteners, sugar, and artificial colors. Since my patients with CIRS are typically very sensitive to additives and chemicals, these patients often don’t tolerate these drugs well. To make things worse, these drugs can also be incredibly constipating, which is a horrible side effect and counterproductive when the goal is detoxification.

If you cannot tolerate cholestyramine or WelChol, what can you do?

This is where we face the next controversy in the Mold Wars.

Other Binders

Many practitioners in the integrative world began using things like activated charcoal, clay, bentonite clay, alginate, silica, which are effective for environmental toxins. These substances are good for overall binding, and are useful for binding heavy metals, but aren’t specifically studied for mold-related toxins.

Okra and beet fiber, however, HAVE been researched and studied for mold-related toxins. Compared to the pharmaceuticals mentioned above, these are the next best binders for treating CIRS. So using a supplement that has those extracts is a better way to go if you’re specifically focusing on binding and detoxifying mold-related toxins in the treatment of CIRS.

This can get more complicated for many of my patients who don’t just have mold issues; many also have SIBO, gut issues, heavy metal problems, autoimmune disease, and more. For some of these patients, using a different kind of binder is more appropriate. Binders, in general, are a controversial topic, and opinions vary widely depending on the specialist with whom you’re working and their experience.

Lipid Therapy

Another effective and evidence-based strategy for treating CIRS involves consuming healthy fats, also known as lipid therapy.

How does lipid therapy help with detoxification? Toxins get stuck in fat tissue, which is the reason why increasing the production of bile and supporting the liver are important aspects of treating CIRS.

Unfortunately, many mold practitioners — particularly those who are in the “urine mycotoxin” camp — are not familiar with lipid therapy and do not utilize lipids for reducing detox reactions, lowering inflammation, detoxifying the liver, and making more bile. Lipids (clean, healthy fats) can act like soap in the cell membranes to help pull out toxins.

Lipids (clean, healthy fats) can act like soap in the cell membranes to help pull out toxins.

When using lipid therapy with my patients, I like to use phosphatidylcholine, balanced omega threes and omega sixes, TUDCA (tauroursodeoxycholic acid), and even butyrate. These powerful nutritional supplements support the body’s ability to detoxify the cells.

Battleground 5: The Battleground of the Mind

The last battleground I want to talk about, which is probably one of the biggest and most difficult to overcome in patients with CIRS, is the battleground of the mind. When I say the battleground of the mind, I’m not just talking about past traumas, abuse, family situations, or adverse childhood experiences, although they can contribute as well. CIRS, by itself, can actually cause brain inflammation.

Recent medical literature highlights specialized brain scans called NeuroQuant scans, used to measure changes related to brain volume and traumatic brain injury.^[1–2] Many triggers, like concussions and tick bites, can contribute to this brain-related trauma response. When this happens, the brain becomes inflamed and interferes with the functioning of the immune system, hormonal balance, blood pressure, mood, digestion, sleep, and the pain response.

For those with CIRS, this means that even after they have remediated their home, after they have treated their gut, after they have used lipid therapy, their brain can remain inflamed. When this happens, I sometimes see patients get only 60% better. They get stuck because they’re not dealing with this trauma brain response.

Trauma Therapy

Trauma therapies, such as limbic kindling, EMDR, tapping, and others can help these patients get out of this trauma brain spiral. By itself, this can reduce their inflammation, and help their body to start to heal and repair. Calming the trauma response is an important, often overlooked, step on the road to healing for my patients with CIRS.

One system I often recommend to patients is the Dynamic Neural Retraining System™ developed by Annie Hopper. The Dynamic Neural Retraining System™ is a drug-free, self-directed program that uses the principles of neuroplasticity to help reverse limbic system impairment in the brain, and to regulate a maladapted stress response involved with many chronic illnesses such as Long Covid, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Chronic Lyme Disease, Food Sensitivities, Anxiety, Chronic Pain, Postural Orthostatic Tachycardia Syndrome and many other conditions.

Related Conditions

Reflecting on brain trauma is a reminder that CIRS is rarely a standalone condition. Patients with CIRS also tend to have one or more of the following chronic conditions:

• Dysautonomia (and more specifically, POTS)
• SIBO (Small Intestine Bacterial Overgrowth)
• Hypermobility
• Autoimmune disease
• Sleep apnea

These conditions tend to go together, and it’s important to see them in the bigger picture of a person’s health to be able to connect the dots.

The Big Picture in CIRS Treatment

The most important question to ask in treating people with CIRS is: What is the next step? We focus on the next intervention that will make the most impact for someone struggling with CIRS.

1. Of course, the first step is, ideally, removing yourself from the triggering environment, but that is not also always possible.
2. The second group of interventions that I usually leverage are lipid therapy and binders. This is an important step and one that requires a skilled practitioner to help you navigate which ones to use.
3. From there, I consider what else is going on with the patient from a holistic perspective. For example, if the patient is struggling with dysautonomia, they are not getting enough blood to the brain and gut, we work on getting the blood pressure up using things like fluids and electrolytes. If the person is hypermobile, that makes it hard for them to detoxify. Hypermobility also increases the likelihood of sleep apnea. And if the person has sleep apnea, it’s really hard for their body to heal. If you don’t sleep or you don’t manage your stress, it’s really, really difficult to get better.

Conclusion

I hope this series has been helpful in expanding your understanding of some of the deeper concepts and issues that we consider when treating CIRS. As you can see, there is much controversy around diagnosing CIRS, identifying the cause (which may not even be mold), addressing the environment, and treating the patient to allow their body to heal. This is why it’s so important to find a practitioner who is skilled and experienced in this area.

If you would like to learn more about connecting the dots in your own health, and are living with the burden of stress and fatigue, you won’t want to miss this free masterclass, Why am I Still Sick: The Chronic Illness Connection We’re All Missing.

References

1. McMahon SW, Shoemaker RC, Ryan JC (2016). Reduction in Forebrain Parenchymal and Cortical Grey Matter Swelling across Treatment Groups in Patients with Inflammatory Illness Acquired Following Exposure to Water-Damaged Buildings. J Neurosci Clin Res 1:1. doi:10.4172/jnscr.1000102
2. Shoemaker, R. C., House, D., & Ryan, J. C. (2014). Structural brain abnormalities in patients with inflammatory illness acquired following exposure to water-damaged buildings: A volumetric MRI study using NeuroQuant®. Neurotoxicology and Teratology, 45, 18-26. https://doi.org/10.1016/j.ntt.2014.06.004

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