Getting to the Root of Chronic Illness: Part IX

This final installment brings us to the end of this series about the many root causes of debilitating chronic illness. Today, I’m going to discuss a hot topic in the world of chronic illness these days: toxic mold exposure and the condition called Chronic Inflammatory Response Syndrome (CIRS) coined by physician-researcher Dr. Ritchie Shoemaker.  What is CIRS, and how much might it be factoring into your poor health?

Many of my clients come to me already having been diagnosed with this condition by a mold specialist and they believe it is the cause of most, if not all, of their physical ailments. What I often discover after doing some digging into their story is that mold is just one piece of their chronic illness puzzle.

I recognize how maddening it is to hear all the conflicting opinions about how problematic mold is, or isn’t, in someone who has fallen down the rabbit hole of chronic illness. Surely, if you’ve been ill for any length of time, you have likely heard the terms “biotoxins”, “mycotoxins”, or “mold illness”, and you may have had an ERMI done on your home or had your HLA haplotyping genetic test done to see whether you are among the 25 percent of the population that have the "dreaded gene" and thus are genetically vulnerable to mold toxicity.   I happen to be a member of this 25% club!

While it is common knowledge that mold in general is not healthy for anyone, and it does absolutely play a role in many of my clients’ worsening health conditions, I no longer believe that mold illness is the sole reason that most people succumb to CIRS.  This is not to say that there are not exceptions to this; especially in extreme situations such as hurricane damage.  I also am not a proponent of extreme, radical mold avoidance in the majority of cases (of course, barring a major and obvious mold infestation as would occur with severe water damage).   By extreme mold avoidance, I am referring to the practice of getting rid of all of one's possessions, building a metal home, and taking other extreme measures to avoid any future "mold hits".  In this blog, I’m going to explain my position on this.

But first, let’s discuss what mold is and how it can lead to CIRS.

What Is Mold, And Why Is It Harmful To Our Health?

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Mold is a type of fungus that reproduces in tiny spores, and it grows in warm, damp, humid areas. It often shows up when water leaks, floods, and/or poorly ventilated areas create the correct environment for it to grow. What’s dangerous is that mold produces “mycotoxins”, which are toxic chemicals released into the air that have the power to make genetically susceptible people very sick.

The illness resulting from mold exposure in those who have the genetically susceptible gene is called “Chronic Inflammatory Response Syndrome”, or CIRS.

Water-damaged buildings are a major site of mycotoxins, with the most commonly found, highly toxic species being Stachybotris, Aspergillus, Penicillium, Chaetomium, and Wallemia.

According to Dr. Shoemaker, roughly 25% of the population is genetically prone to developing CIRS because their immune systems don’t recognize biotoxins and thus cannot detoxify them out of the body. Some of the most common signs and symptoms seen in CIRS are said to be:

  • Chronic fatigue and weakness
  • Post-exertional malaise
  • Memory problems, difficulties with concentration and executive function
  • Disorientation, confusion, and other neurological manifestations
  • Anxiety and Depression
  • Headaches
  • Vertigo, lightheadedness
  • Muscle aches, cramping, joint pains without inflammatory arthritis
  • Hypersensitivity to bright light, blurred vision, burning or red eyes, tearing
  • Cough, asthma-like illness, shortness of breath, chronic sinus congestion
  • Air hunger or unusual shortness of breath at rest
  • Hormonal dysregulation
  • Chronic abdominal problems including nausea, cramping, and diarrhea
  • A propensity to experience static shocks
  • and more!

As you can see, these symptoms run the gamut and can also be associated with other conditions, so pinning down whether mold is truly responsible for any of them can prove challenging. I see many people who attribute all of their symptoms to mold, and yet we later discover that mold is only one piece of their puzzle and many times, it is preceded by several other factors that laid the foundation for mold illness to take hold.

Dr. Ritchie Shoemaker has identified several blood markers that may point to whether mold is an issue for somebody, and they include: Elevated C4, elevated MMP-9, reduced MSH, elevated leptin, reduced ADH, elevated TGF-beta 1, reduced VEG-F, reduced VIP, positive MARCONS test, and more. However, most Western physicians will often refuse to run them, as they are not familiar with CIRS, sometimes making it difficult to get them covered by insurance—and even further, some of these labs, such as C4a, are not run by most labs and can be extremely difficult to obtain.  I feel it is also important to mention that these markers can fall out of range for other reasons beyond mold exposure.  For example, TGF Beta-1 can elevate in autoimmune illnesses.   

Why I Don't Recommend Extreme Mold Avoidance

It is often an extremely unrealistic, and massively stressful proposition to suggest that a chronically ill person who is struggling just to get by each day should leave their home, get rid of all belongings, uproot their life and the life of their entire family, and then pitch a tent in Arizona in order to ever get well; which is what some clinicians advise their clients to do.  

If you are trying to raise a family, and your kids are school-aged, how is this a feasible option? The prospect of this idea is enough to send someone over the edge emotionally—and I cannot understate that the body cannot and will not heal if the stress response is continually activated.  I have had clients come to me from other practitioners so traumatized by the notion of this that my first priority in working with them was to spend a few coaching sessions solely on calming the stress response before we could even begin with other interventions. 

For me, I now know that years of perfectionism, trauma, and buried feelings of anger, sadness, resentment, fear, and anxiety set the stage for me to become so devastatingly sick for several decades—and shifting these behaviors and thought patterns is a large and absolutely vital focus of the work I do with my clients. The stress hormone cascade quite literally prevents healing. I believe that more functional and holistic practitioners need to be talking about the monumental level of stress caused by the suggestion that people should abandon their homes and enter financial ruin in order to reclaim their health, and the toxic impact of that stress on the body’s ability to heal.  To be honest, I sometimes wonder which is more toxic, the mycotoxins or the mental/emotional stress created by the belief system of "you will NOT get well unless you practice extreme, radical mold avoidance!"

Secondly, in my experience, extreme/radical mold avoidance is usually not necessary.  In my case, mold remediation and avoidance did play a role in my recovery, but it was not the thing that ultimately healed me, by any means.  And among my clients, I am observing the same trend. I believe that the genes for mold toxicity susceptibility flip on for the same epigenetic reasons that any illness takes root in the body: a multitude of physiological, emotional, mental, and spiritual stressors converge into the perfect storm. 

For example, a client of mine in her thirties with chronic health challenges discovered some mold in the home she was living in, so she understandably attributed her health problems to the mold. When she starting working with me and I delved deeper into her case, I discovered that her gut health had been poor since a young age, she had endured some trauma (as we all have to varying degrees), had body image issues since her teenage years, took some toxic medications in the past that undoubtedly stressed out her liver, and was a perfectionist.  On top of that, she was a stressed out mom of three young children and could not carve out enough time for personal care in any given day.

Long story short, she moved into a new home. We changed her diet, started addressing gut issues, used some gentle binders to help detoxify her body, and worked on stress-relieving techniques—and she started making progress.  However, she then did an ERMI test on her new home and the score was worse than the previous home, meaning it had higher mold counts. How does one explain that she is feeling better now, in a moldier home?

I have to say that I’ve really changed my tune when it comes to mold illness. Just because someone has it doesn’t mean it should be the sole focus of a healing protocol.  Of course, I recognize there is a difference between these chronic, vague cases of mold illness that present in the chronically ill population, and those who become acutely ill from major mold growth such as in a situation like Hurricane Katrina.  Gut health and addressing psychological stressors are the two most foundational steps on the journey of healing from any chronic illness—and mold detoxification is usually only one part of this journey.

My Mold Story

From the time I began my career as a high school teacher in 1997, which coincided with when I first fell ill, I worked in water damaged buildings that had visible mold growing in various areas.  In 2012, I walked away from the educational arena to focus on restoring my health and begin working on building a home-based career in functional health and nutrition. Being out of the water damaged school buildings, I thought for sure was going to my ticket to vibrant health.

Sadly, this was not the case. As a matter of fact, just the opposite happened – my health continued to plummet and the inflammatory blood markers linked to mold exposure continued to rise at exponential rates. My husband and I were totally baffled by this as we searched the house high and low for evidence of mold but could never find any.  I made my husband cut holes in walls and ceilings on a weekly basis to look for hidden sources of mold and/or water leaks. Still, we found nothing!

The one place we never checked, however, was the attic. I mean, how many people actually check their attic other than when they first buy a home, right?  Well, what a mistake that was because when we finally did check the attic we were struck by the amount of toxic black mold that covered the entire ceiling of the attic.  The mold remediation expert that we hired said that it took around a decade for the mold to reach this level of growth.  This meant that the mold in our attic was being filtered through our entire home via the ventilation system for ten year. Yikes! 

This was no doubt playing a role in my continued illness and had to be addressed immediately. But what I find incredible is that even after my husband and I remediated our entire home, purchased new bedding, got rid of all the drapes and carpeting, washed our clothing with mold-killing solutions, had a professional cleaning company come in and clean every surface in the house with a specialized anti-fungal mixture, purchased a new vacuum cleaner with HEPA filters on it, purchased two high-tech air machines that eradicate mycotoxins, put industrial-sized fans in our bathrooms so there’s no humidity build-up, and I moved out for two months during this process—I saw no improvement in my health.  Granted, I absolutely understand that it takes a long time to detox mycotoxins and undo the damage that mold illness creates, but my gut feeling was that there was more going on beyond mold.  I also need to mention that my husband and dog (Tader) did not suffer from any apparent health challenges as a result of this mold exposure. 

After this immense undertaking that cost upwards of $60,000, I didn’t feel any better.  In fact, I was getting sicker and sicker.  I unknowingly was infected by the intestinal parasites Giardia and Blastocystis Hominis, had autoimmune SIBO triggered by previous infections with Cdiff and Salmonella, and was suffering from severe adrenal burnout from years of high stress as a high school teacher.   I had horrible gastrointestinal symptoms and was beginning to dig deeper into functional medicine—and that’s when I realized I had to run gut tests on myself.  So I shifted gears from mold to my gut, and I stopped hyper-focusing on my “dreaded” mold genes and hidden mycotoxins.  I did everything I could from a mold standpoint except extreme mold avoidance because I simply did not have the mental, emotional, or physical energy to do so.  At this juncture in the mold journey, my marriage also began to suffer greatly.  My husband was beyond sick of cutting holes in our walls and ceilings as well as participating in daily, fear based conversations about mycotoxins and me asking him, "Do you think I need to go live in a tent in the dessert to get well?"  At this point, I decided it was time to move on.

I then addressed my badly damaged gut, took natural-based mold binders such as specialized powdered zeolites, optimized nutrition, sleep, and my strategies for coping with stress, and I started to slowly restore my health. Today, I have recovered much of my vitality and I continue to improve with each day.  I still run my high-tech air machines, and we have a humidity monitor that helps us keep our home at the right level of moisture, but other than that, I don’t give much thought to mold—and I continue to get better.  I refuse to live in state of fear. 

If you or a loved one is struggling with chronic fatigue, pain, and other health challenges, I do hope that you found value in this series and perhaps learned something new. Please know that recovery from these horrific, life-altering illnesses and conditions is totally possible! Your body and mind’s ability to heal is much greater than anybody has permitted you to believe!

Cheers to Restoring Your Health and Reclaiming Your Life!