My Mold Illness Story
If you’ve never heard of mold illness or you thought it was simply “mold allergies,” you’re not alone. Environmentally-acquired illnesses are possibly the most underrated and under-diagnosed illnesses of our time. People usually don’t know it’s a thing until they get it or someone they love gets it. Certainly, not many doctors are aware of it:
Mold toxicity is far more common than is currently recognized. Those who are knowledgeable in this field estimate that millions of people are wrestling with this problem but are entirely unaware of its existence. Mold toxicity goes so unrecognized by most medical practitioners that a patient bringing it up as a possible diagnosis is usually met with a blank stare or, worse, incredulity.Neil Nathan, MD. Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities and Chronic Environmental Illness
Most people with chronic illness will say they used to be incredibly active. I am no exception. I was an avid endurance athlete–training for and completing half marathons, one marathon, and a 2000-mile hike of the Appalachian Trail before the age of 27.
In 2012, we moved into our 1950’s rancher house in a quiet, retired military town. The house needed some updates–particularly to the drainage systems–but it was a perfect “starter house.” My husband and I saw our future family in it–3 bedrooms, 2 baths, and a massive unfinished basement with bright white walls. We were first-time buyers, living the suburban dream.
First Signs of Mold Illness
One of my first symptoms was overwhelming fatigue from merely being on my feet for a few hours. My first job in our new town was working at a local farmer’s market–a job to which I was well accustomed (I worked on farms through my college years). I couldn’t work a day without coming home and taking a nap. I chalked it up to poor diet and began doing Hayley Pomroy’s Fast Metabolism diet. That seemed to do the trick and gave me some much needed energy.
Then I got pregnant and it was like a switch in my body’s central processing unit turned off. Every single organ system was affected. At the time, there was no way I could have known what was happening to me, other than I was growing a human being and sometimes that’s very uncomfortable.
***Newsflash for pregnant women seeing conventional doctors: if any new medical issues arise while you’re pregnant, it’s because you’re pregnant. And then after you give birth, it’s because of postpartum hormone fluctuations, which I’ve cynically heard doesn’t end until menopause. And then it’s menopause.
I had an impressive litany of symptoms during pregnancy (see later in this article). And the days and weeks after giving birth were some of the darkest times of my entire life. All of those disregarded symptoms came to a head, landing me in the ER. I was so convinced that I was going to die, I began writing letters of goodbye to my newborn daughter, apologizing for not being able to raise her (you’ll later learn that thoughts of imminent death are a pretty common symptom of mold toxicity). The strange thing was that I’d feel fine outside. I’d spend hours walking around or laying on a tarp in the yard, because being outside kept my symptoms at bay.
Around this time, we noticed the walls of our basement were no longer bright white. There appeared to be dark shadows “coming through” everywhere…
Seeking a Diagnosis of Mold Illness
My daughter thrived and developed, and I, for some reason, just couldn’t get better. Every time I thought I was out of the woods, new symptoms would arise and I would get sicker. I got on board the doctor train, and the anecdotes I have from those visits would have you rolling (or sobbing, if you’re feeling particularly empathetic). A few stick out in my mind:
Ear, Nose, & Throat
An ENT told me that cysts on my thyroid, throat enlargement, and gagging were due to the stress of being a new mom.
A gastroenterologist enthusiastically gave me the full work-up of testing (bill that insurance, baby), only to tell me, as I drowsily awoke from the anesthesia “it must be IBS–I couldn’t find anything, but excellent job preparing for your lower scope.” (That’s right, I got a compliment for my colon-cleansing abilities–move over Miralax.)
A psychiatrist accused me of self-medicating because he accidentally clicked a button on his computer that automatically checked YES for an extensive list of possible street drugs a patient has used. I wanted to say, “Yes, I’ve been happily self-medicating and I am feeling DAMN GOOD!” But instead I defended my sobriety.
Another therapist’s approach to treating me was to literally sit and stare at me, waiting for me to say something. I would challenge his approach and stare back, waiting for him to say something. Sometimes we’d sit there for minutes on end in total silence.
I once spent 20 minutes reading off a carefully detailed list of all my symptoms to a nursing assistant. She tapped frantically away on a keyboard. Then the doctor came in the room, and goes, “So I see here you’re having trouble sleeping.” He gave me a prescription for Xanax. (I quickly learned to pare down my symptoms to a select few–the line between appearing sick and crazy is a fine one to navigate.)
I told my family practitioner that I thought I had mold illness (don’t do this). Then I asked if he wouldn’t mind reading up on biotoxin illnesses and ordering these labs. He excused himself from the room and called my allergist without my knowledge. Together, over a 1-minute phone conversation, they decided it was probably anxiety. I imagine they met for beer later on and had a good laugh.
I had two or three different skin tests done over these few years–none tested positive for mold. However, an out-of-the-box allergist noted all of my inflammatory, allergic-type symptoms and said he thought I was under a lot of stress…
Conditions for Mold Illness
What the allergist said is kind of a cop-out, but is technically an accurate diagnosis. Really, all chronic disease is rooted in a type of stress to the body. We tend to think of stress in the context of “Oh, my life is so busy.” But anything–physical, environmental, emotional–could be interfering with our ability to get well. There are stressors we can’t see or immediately sense in and all around us. Healthy, resilient bodies encounter and “process” these environmental stressors every day, minute-by-minute. But what happens when we add more and more and more low-dose stressors to our environment? Can they become a major stressor and “break” some of us?
Mold as an Environmental Stressor
It’s like this: mold didn’t make me sick. It kept me sick. I didn’t suddenly wake up in a house full of stachybotrys and get violently ill–it wasn’t my “triggering event.” Many people with mold illness recall a stressful event from which they never recovered–i.e. a viral infection, pregnancy, surgery, or traumatic event. Simply put, we are designed to handle major stressful events…but there is a threshold.
Our current environment is so full of man-made stressors, we have no idea how low that threshold has sunk. We are essentially guinea pigs to the incredible amount of synthetic chemicals, pollutants, pesticides, radiation, and resistant bacteria and fungi all around us. These small stressors unwittingly chip away at the body’s resilience, creating optimal conditions for a total system failure. I’m confident that what happened to me could (and does) happen to anyone, given enough time and one good triggering event.
When the dominoes of inflammation start to fall, every system is affected. My symptoms became a laundry list of every possible thing that can go wrong in the human body. I try to keep in mind that inflammation is the body’s way of healing and protecting itself. Which then makes me wonder how toxic our world must be that my body would resort to the following, rather than function in its surroundings.
Autonomic Nervous System
This is the only thing I focused on for a while, because Postural Orthostatic Tachycardia Syndrome (POTS) is the only official diagnosis I ever received. Basically, standing up is like a cardio workout for me–I don’t even have to break a sweat! I mistakenly thought–because this particular thing was “diagnosed”–that other issues would clear up if I focused on healing my POTS. I’ve since learned to detest the label and diagnosis. It’s meaningless and only served to narrow my focus on one particular aspect of healing for over a year.
Trying to concentrate now is like trying to look through a pair of binoculars that aren’t in focus. The effort is there, but the ability to make it clear is not. It’s like living underwater or occupying space with no memory of how or why I am there. It takes quadruple the amount of time to complete things that require focus (like writing blog posts!). And the rage–oh, the “mold rage.” My reaction to even minor stressors used to mean running the gamut of extreme emotions in a matter of minutes.
There were also the thoughts of death. I was not suicidal, but I was convinced of my imminent death. These thoughts would happen in “flares.” As in, one minute I was cheerfully chatting with a friend on the phone and the next I was folding into myself, convinced I was breathing my last. It’s impossible to explain the irrational brain affected by mold. Now that I’m out of it, I see just how affected I was. Mold altered my entire personality. That the human mind could be so affected by these microscopic fungal fragments is…well, it’s not surprising.
Levels of insomnia I didn’t think were possible. I literally did not sleep in a 24 hour cycle–not even for a few minutes. And it happened day after day after day. This went on for over a week once, and I ended up in the ER. I know another mold-toxic person whose doctors thought she had fatal familial insomnia because she also could not sleep at all. If you want to know what will send a person spiraling downward the fastest, this is it.
I am in awe of how much stress hormone the body can produce and still function. I’m certain my cortisol was through the roof–it was high when I had it tested months later. I started meditating. I survived, minute by minute, with deep breathing and mindfulness. It’s ironic, because doctors and well-wishers tell mold-toxic people all the time to try meditation for anxiety and stress relief. I am basically a Buddhist monk now, yet it did nothing to lower my cortisol or lessen the severity of my symptoms.
Speaking of stress, did you know it alters the gut microbiota? Despite my success on the Plant Paradox diet, I have lingering GI issues from this episode of my life. Don’t get me wrong, I have come so far from where I was at peak symptoms. I was down to only a handful of foods I could tolerate and I was not absorbing nutrients. What saved me was eating GAPS-style broth-based meals for several (yes, several) months.
There were episodes of muscular excitation–uncontrollable jumping, twitching, and tingling. I felt completely powerless to control my own body. I lost a lot of muscle mass, too, and not for lack of exercise, which made things worse. Overtime, I simply found myself unable to open jars, walk up stairs, or even pick up objects from the floor without bringing on one of these twitching episodes. It’s not unheard of for sufferers of mold illness to be misdiagnosed with atypical onset multiple sclerosis, Parkinson’s, or ALS.
There’s something characteristic to inflammatory illnesses called “air hunger.” It’s the act of breathing with the feeling of not taking in any air. It is one of the strangest and scariest feelings in the world, and it’s enough to give anyone who experiences it anxiety (whereafter, you get diagnosed with anxiety and referred to a psychiatrist).
As a professional singer, this feeling of starving for air was a huge problem, and yet it was the hardest thing for doctors to acknowledge. That a “healthy” 30-year-old would have a structural (and not technical) problem with breathing is beyond the scope of most ENT’s. They assumed there was something wrong with my technique and referred me to voice therapy twice. In reality, inflammation and fungal load had affected the modeling of my lungs and airway–an allergist’s spirometry test finally confirmed I had significantly decreased lung capacity.
Those listed above are only the major symptoms. Other things I consider more minor (for me, personally) included immunodeficiencies, runny nose, persistent dry cough, tissue swelling in my neck, excessive thirst, night sweats, blurred vision, skin rashes, scalp psoriasis, joint pain and stiffness, dizziness, and being exceptionally prone to static shocks.
Diagnosing & Treating Mold Illness
Unsurprisingly, there was mold in our house. And I am now under the care of an integrative physician who both recognizes and is treating me for mold toxicity. I have come so far and I still have a long way to go. My advice to anyone seeking a diagnosis or treatment is to find a doctor who is mold-literate. Should you try to do this on your own, you will quickly learn there is no one protocol. The amount of contradicting advice out there is enough to make your already foggy brain explode. Everyone will tell you to do something different and to definitely not do the thing someone else just told you to do.
Be at peace (as peaceful as you can be)–there is no one way to the finish line. You will likely need to do a lot of experimenting or searching to find the right treatments for you. I’ll be sharing mine when the time is right. For now, here are the resources I found to be most useful in discovering and navigating diagnosis and treatment for mold illness:
- Break the Mold: 5 Tools to Conquer Mold and Take Back Your Health by Dr. Jill Crista (a good resource for natural methods)
- Surviving Mold: Life in the Era of Dangerous Buildings by Dr. Ritchie Shoemaker (his treatment protocol a bit outdated, but Dr. Shoemaker is the pioneering doctor in environmentally-acquired illness)
- Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities and Chronic Environmental Illness by Dr. Neil Nathan (a comprehensive list of all possible treatments for multi-system inflammatory conditions)
Find a doctor near you who treats mold illness:
- Hybrid Rasta Mama – state by state directory
- Institute for Functional Medicine (most functional doctors are mold-literate–ask if they have experience treating mold patients)
- Paradigm Change – state by state directory
I’m including these because they can be helpful for getting new ideas to try or to research different methods. Keep in mind, though, each website advocates for a different approach–diets, treatments, and remediation efforts–which can be overwhelming when you’re first navigating this illness: