My Mold Illness Nearly Broke Me — Let’s Ensure Others Get the Care They Deserve

Like that of millions of others, my journey with mold toxicity didn’t begin with clear answers, or even a diagnosis – it began with mysterious symptoms that took years to fully understand.

Initially, there was no single symptom that screamed “mold” — there were many signs, all of which began once I moved into my one-bedroom in Miami, and all of which I tried to attribute to something else. I felt tired most days, but blamed burnout from work. I noticed a musty smell in my home, but thought it was a part-cigarette, part-my neighbor’s HVAC system. I developed IBS-type issues, but assumed it was a bad meal or two. There was a totally rational explanation for every issue, but none, in my mind, were mold-related.  

Over the course of a few months, I became so fatigued that I had very few functional hours in the day and spent most of my time in bed just “recovering”. There would be moments where people were speaking to me, but I couldn’t process what they were saying. I started losing a significant amount of hair — so much so that I committed to a bob to hide the missing sections. I started gaining weight rapidly, despite minimal changes to diet. My mental health plummeted; it felt like life went from full-spectral technicolor to something bland and dismal.

I did what anyone else in my position would: I scheduled a doctor’s appointment. However, because each symptom on its own is vague and nonspecific, the whole picture went unnoticed by my primary care doctor and a host of specialists, including a neurologist, functional health doctor, and immunologist/allergist. The labs and imaging showed up largely normal. 

My symptoms only intensified. Why couldn’t these doctors find what’s wrong with me? The only thing that kept me tethered during these moments of panic was that I still had physical symptoms to prove it was real — no matter how many labs came back normally. 

During this process of doctor ping-pong, a friend with clinic experience gave me the missing clue that changed my life: my symptoms may be mold-related. In fact, she had a strong feeling there was mold in my apartment. I went back to my doctors and mentioned mold, multiple times. They dismissed the notion and attributed mold to an allergy and fungal infection. 

Despite their skepticism, I contacted my landlord. They sent an inspector, but the person they hired wasn’t mold-certified, and the samples showed up largely normal (except for some black mold under the kitchen sink). So, I hired my own certified, highly-rated inspector. He quickly detected highly toxic levels of mold throughout my home and advised me to find another place to live immediately.

I left that evening for a hotel, an option I was privileged to have, but many others in my position do not. Within days, I got rid of nearly everything I owned — I couldn’t risk any more exposure. When I ended my lease due to health conditions in the unit, my landlord kept the entire $5,400 security deposit. The loss stung, but again, absorbing it was a privilege many in this situation lack.

Through serendipity, I was connected with a world-renowned expert physician, trained in the Shoemaker Protocol, who diagnosed me with CIRS, sometimes known as mold toxicity, a chronic condition that affects the brain, immune system, lungs, gut, and more. It is still a bit shocking to write: I developed a chronic condition by missing something obvious – mold – in just 6.5 months.

In fact, over 20 million people in the U.S. may be living with CIRS, though most don’t even know the term. Their symptoms get labeled as anxiety, chronic fatigue, early neurodegeneration, IBS, or fibromyalgia. Under the surface, the root cause (prolonged dysregulation of the immune system) goes unrecognized.

My physician conducted a battery of labs and imaging that were a far cry from anything my prior doctors had recommended: a lab panel for the CIRS markers (such as MMP-9, TGFB-1, MSH) and NeuroQuant (MRI imaging to see volumetric changes in the brain). My labs and imaging were off. We began treatment with an off-label FDA medication, colesevelam, typically used to treat CIRS / mold toxicity. 

In just two weeks, I had significant symptoms recovery in what mattered most to me: being able to think more clearly. I dropped to the floor and cried with the emotional wave that came over me. I finally felt functional and more myself. 

Why aren’t more people with mold toxicity getting help sooner? The estimated delay between symptom onset and diagnosis is 2 to 5 years. In some cases, it can be as long as 20 years. Insurance almost never covers mold toxicity directly, just specialist referrals that may or may not work — meaning patients can spend tens of thousands of out-of-pocket dollars on repeated specialist visits, failed prescriptions, mold remediation, and lost working days.

Part of the answer is that mold-related illness is absent from traditional medical education. Only two academic institutions (George Washington University and Burrell College of Osteopathic Medicine) have offered courses on biotoxin-related illness. Outside of these, independent programs like the CIRSx Institute and the CIRS Proficiency Partners certification offer in-depth training.  

A healthcare provider doesn’t have to be mold certified to make a difference. They can ask patients if they’ve lived or worked in a place with visible mold, musty smells, humidity issues, or signs of water damage. If those line up with unexplained symptoms like fatigue, brain fog, shortness of breath, headaches, or gut problems, then further investigation is necessary. These patients might have to test their homes or workplaces for mold, and also undergo lab testing for CIRS-specific markers. 

Today, the journey is still going in many ways: I continue to learn more about this illness and ways to best serve patients. I continue to maintain a healthy lifestyle and prophylactic medications to feel like my best self and manage my condition. 

Most importantly, I’ve also seen all the beautiful ways this experience was for me, not against me – it gave me the fire and purpose to solve access to care for mold toxicity, for humanity.

Photo: Only Flags, Getty Images

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