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
UPDATE: I am completely recovered from every symptom and illness listed in this post. This story remains as a reminder of what I went through AND as a beacon of hope that you who are suffering can completely recover as well. I underwent a self-directed limbic system rehabilitation program called the Dynamic Neural Retraining System. Because of this treatment, I no longer qualify for any of my prior diagnoses. I can go anywhere I want and eat anything I want without reaction. I’m living a normal, healthy life–please keep that in mind as you read my story below.
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 adversely 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.
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 (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 tissue 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 did lots of blood work, noted all of my inflammatory, allergic-type symptoms and said I had symptoms of something called Mast Cell Activation Syndrome (MCAS), but that he thought it was due to stress…
Conditions for Mold Illness
What the allergist said misses the mark, but it’s not too far off. 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–can be a stressor to the brain. Basically, there are stressors we can’t see or immediately sense in and all around us. Healthy, resilient brains 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 brain’s resilience, creating optimal conditions for a total limbic 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 brain is overloaded by stressors for a long enough time, every system is adversely affected. My symptoms became a laundry list of every possible thing that can go wrong in the human body.
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 was like a cardio workout for me–I didn’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 that the label and diagnosis was meaningless and only served to narrow my focus on one particular aspect of healing for over a year.
Trying to concentrate was like trying to look through a pair of binoculars that weren’t in focus. The effort was there, but the ability to make it clear was not. It was like living underwater or occupying space with no memory of how or why I was there. It took quadruple the amount of time to complete things that required focus (like writing blog posts!). And the rage–oh, the “mold rage.” My reaction to even minor stressors meant 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 rationally explain the limbic brain. Now that I’m recovered, I see just how affected I was. My entire personality was altered.
Levels of insomnia I didn’t think were possible. I literally did not sleep a wink 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 chronically ill 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 now 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 even months after I started treatment, when I was starting to feel better. I started meditating. I survived, minute by minute, with deep breathing and mindfulness. It’s ironic, because doctors and well-wishers tell chronically ill people all the time to try meditation for anxiety and stress relief. I meditated constantly, yet it did nothing to lower my cortisol or lessen the severity of my symptoms. Meditation is not enough on its own.
Speaking of chronic stress, did you know it alters the gut microbiota? Despite my initial success on the Plant Paradox diet, I had lingering and worsening GI issues. 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, three meals a day, for almost a year.
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 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 sought the care of an integrative physician who both recognized and treated for mold toxicity. My advice to anyone seeking a diagnosis or treatment is to find a doctor who is mold-literate. They may be able to alleviate your most pressing symptoms immediately while you work long-term to correct your response to environmental stressors.
My integrative doctor gave me binders, detoxification protocols, and nutritional supplements. But those were temporary measures that did not treat the root cause. In fact, long term, some of them made things worse. I wanted to be able to go into old buildings again without reacting and I wanted to move back into my home. I simply could not accept that I had to avoid these things for the rest of my life.
Dynamic Neural Retraining System
In August of 2019, I found this program called the Dynamic Neural Retraining System that promised to treat the root cause of mold toxicity and enable me to go anywhere I want and eat anything I want without suffering. I literally had nothing to lose. I was living at my parents’ house, unable to care for my daughter alone, eating broth 3 meals a day, and unable to go anywhere without having a reaction. My family was separated and my career was gone. This was one in a long line of treatments I was willing to try.
And it ended up being the last thing I did. It was the one, the cure-all I knew existed somewhere. Annie Hopper saved my life with her brain retraining thing. And despite it’s cult-ish vibe and stock photo images of people holding their hands in the air in celebratory ecstasy (seriously, those intros to the testimonial videos…), I did it with 1000% commitment. I showed up every single day with the tenacity of an Olympic athlete.
A Brand New Life
Progress was very slow and very up and down. Don’t get the impression that I suddenly lived a normal life, symptom-free, and that it happened overnight. I worked my butt off for every single victory. And I continue to work the program beyond the minimum 6 months because I occasionally experience symptoms in response to stressful events. But I’m confident these will go away. Why? Because allllll of that suffering I detailed above did. I no longer experience any symptoms of mold toxicity, POTS, MCAS, or IBS. In fact, most days, I forget I was ever sick. I take my health for granted–a feeling I never thought I would experience again.
I can go into any building, including my house, without reaction. In fact, as I type this, my family is packing up to move back there permanently (our basement was remediated, for the record, but we didn’t do any of the deep cleaning or purging of paper/wood items recommend in mold books).
There is no more “downward spiral” or chronic illness for me. I plan to write more about this in the future, but for now, I cannot recommend DNRS highly enough. It is the top-down, root cause treatment for chronic illness I was looking for.
It is possible to live a normal life again–don’t let any doctor or fellow patient tell you otherwise. There are people who were far worse off than I was who completely recovered using DNRS. I hear a new success/recovery story every week in the community. Your chronic illness isn’t special or different or the exception to the rule. There aren’t 500,000 things wrong with your body; there is one thing wrong with your brain. Trust the science–as implausible as it seems, someone else has been where you are and recovered from it.
- Wired for Healing: Remapping the Brain to Recover from Chronic and Mysterious Illness by Annie Hopper
- 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: