For most of my time as a functional nutritionist, I completely resisted learning about mold illness and mycotoxins. My continuing education journey has taken me to a lot of places, but that was one I just wasn’t interested in visiting. “These people are SO sick,” I thought. It couldn’t possibly be something that I could help people heal from, I believed. And then the universe laughed, everything changed, and mold became the focus of my life.
Like many of us, I initially came to this field of work to try to help conquer my own health concerns. Around 2006, while still living the Standard American life, I started experiencing constant nausea. After medical testing proved fruitless, a Naturopathic Doctor identified various food sensitivities, and some gut pathogens. I took dairy and other reactive foods out of my diet. The nausea abated (but I sure missed ice cream!), and then it returned about 5 years later, in 2011, along with persistent heartburn and episodes of painful esophageal spasms. This continued for 4 years, with multiple practitioners having no success at relieving the symptoms or identifying the root cause. During that time, I graduated both NTA and all the RWS levels, and tried to put to work what I knew. Extensive gut healing protocols and attempts at introducing HCl didn’t work, despite successfully eradicating h pylori, and I always noted undigested food in my stool. In 2015, I identified anti-parietal and anti-intrinsic factor antibodies both elevated, indicating an autoimmune attack on my stomach cells.
At this same time, I began noticing constant swollen glands, fatigue, stabbing ear pain, poor memory and brain fog. When my nausea was very severe, it was often accompanied with vertigo: literally, “bed spins,” as if I had been drinking heavily. Most nights, I had to sleep propped up almost vertically, to keep the heartburn, nausea, and esophageal spasms under control. I also found that I was startling awake at night, which was accompanied with a rush of nausea and vertigo each time. My symptoms were always worse the week of my menstrual cycle, and would also increase with a cold or any similar immune challenge, and in times of high stress. Lastly, the skin on my face would often start peeling, with no explanation as to why.
Blood tests in 2016 identified a reactivated Epstein Barr viral infection. I implemented the AIP diet, which eliminated my memory and brain fog symptoms, but had no other effect after 6 months. I tried a liver detox protocol, which led to chills, diarrhea, headache, and increased vertigo, and was quickly discontinued. In late 2018, I found an expert functional MD who took me on as a patient, and everything changed.
This doctor knew what I now know, and see all the time with my clients: we were missing something. I now had: a chronic virus, autoimmunity, neurological symptoms, bottomed out hormones, digestion that didn’t function, and the list went on from there, with no answers as to WHY. When you’ve done all the right things, run all the right tests, addressed all the issues, taken the pills, changed your food, handled your stress, and you’re still really sick, you’ve not found the root cause. For so many people, including me, that root cause is mold.
When my doctor suggested mold testing, I thought she had to be wrong. I have lived in the same home for 20 years, in a hot sunny part of California. My husband, an electrician, had crawled all over our house/attic/basement and definitively said there was no mold or water damage. And, in 2017, I had run an ERMI mold test of my home that showed no high levels and was considered “normal.”
Yet, my urinary mycotoxin test came back with high levels of a few different mycotoxins, the poisons that molds emit. Very specific blood panels (for markers I had never even heard of!) showed extreme inflammation and immune activation that occurs as a result from mold exposure. Specific genetic testing showed that I have a genetic makeup that only a very small percentage of people have, that renders them highly susceptible to mold toxins. I was diagnosed with CIRS–Chronic Inflammatory Response Syndrome–as a result of exposure to mold toxins. Having an answer, as anyone who has had a mysterious chronic illness knows, was an enormous relief. Finally, there was an explanation for how I felt! Not to mention, there was something to DO.
And boy, did we do it.
A highly trained mold inspector who works exclusively with CIRS patients found mold throughout my HVAC system, and under my roof. We got rid of 75% of what we owned, due to contamination from mycotoxins that can’t be cleaned off of porous surfaces. We moved to a rental house for 8 months. And we gutted our house, taking it down to the studs, and replacing absolutely everything. We blew through our savings, and the stress was beyond anything I could have imagined. I undertook a very complex and hefty mold detox protocol, that still continues in an edited version. Upon moving out of our house, I was almost immediately 75% better. Healing from CIRS is a slow process, but I am doing the work, and it has been an amazing journey for me and my health.
Given my status as a lifelong student and overachiever, it was no surprise to anyone that I quickly learned everything I possibly could about CIRS and mold toxicity. The very topic I had long avoided became the focus of my education and has now become the passion of my client work. It’s estimated that 50% of homes and 80% of public buildings (churches, hospitals) have water damage, which means they have mold. And 25% of people are genetically susceptible to being made sick by mold toxins (a much smaller percentage are extremely susceptible, like me). Do the math, and you quickly realize that mold toxicity illness is absolutely rampant. It’s been called “the next Lyme disease,” in terms of its hidden health burden.
The silver lining to all of this has been my ability to now help others who have been sickened by mold. The processes, testing, steps to healing, and supports I use, all based on the latest research and thinking in the field, have come together into an effective system that is changing lives.
When I stop to identify the big WHY–why did this happen? why me?–I realize it was so that I can use what I’ve learned to help others heal. There are so few practitioners out there doing this work, and so many people who need it.
(Originally written as a guest blog post for Restorative Wellness Solutions)