Pain from Environment – My College Health Journey, Part 3
This is the sequel to Part 2 of my college health journey. I go over how I discovered mold to be the cause of my health decline, and how I got out of the moldy building making me sick.
If you have discovered mold in your home or work and are on the journey to recovery, I hope this post is helpful.
Year 3 Semester 1
A rude awakening
After some time back in New Jersey, I was feeling better. I was optimistic about the start of my third year. My most intense academic course schedules were behind me. Surely I’d feel better this time around!
As soon as I entered my condo in Houston, I felt something was amiss with the air. At the time I just thought it was polluted city air. I even remember asking some plant-keeping friends about indoor houseplants to help purify air.
That night, my symptoms – the fatigue, insomnia, anxiety – came roaring back. Clearly, something was up. These were all symptoms I previously attributed to stress from school. Yet here they were, before the first day of classes had even begun!
A couple of nights later, I glanced upwards by chance and came across this sight:
Previously the AC vents didn’t have visible mold. The mold likely had gotten worse over the summer while I was away from the condo. However, looking back at the original home inspection report before I moved in, the inspector did note dark “dust” on the vents.
In that moment, my life changed forever.
It all clicked – my health decline was caused by living in buildings with toxic mold problems. When I was in places like Houston or Baltimore, my health worsened. When I was away from these buildings living at my family home in New Jersey, my health improved.
Some months prior I had read articles on the Bulletproof website about how moldy water-damaged buildings can cause not just respiratory symptoms. They can also cause issues such as fatigue, anxiety, and cognitive problems – exactly what I was facing. At the time I’d dismissed the idea of mold being a problem since I couldn’t see any mold in the condo. But now, the evidence could not be ignored. There was even a diagnosis, for being affected by mold: chronic inflammatory response syndrome (CIRS). Dr. Ritchie Shoemaker first described this.
I wanted to research mold illness further, but the information available was so confusing to navigate.
Many physicians even believe that mold does not affect human health outside of allergies and respiratory symptoms! My general practitioner had no clue about toxic mold. I realized early on that I would have to do a lot of self-learning to recover. Conventional medicine wouldn’t have many answers for me. Facebook support groups became an invaluable resource.
My father flew over to Houston for a few days to help me arrange for remediation and get me to a hotel while it was in progress. His timing was fortunate – the remediation was finished right before Hurricane Harvey, the most devastating storm Houston had experienced in recent history. After this storm mold remediation companies would be overloaded with work. My building did not flood during the storm, but my troubles weren’t over yet…
After the remediation my father and I agreed to search for new housing. However, in a devastated post-hurricane housing market, this search gained no traction.
In the meantime I went back to living in that house, figuring it should be fine after remediation. Yet I was no healthier. In fact, I continued declining. The insomnia came back, this time with additional night sweats to join the party. My cognitive function declined even more. In desperation, I bought two Molekule air filters. They helped at first, but ultimately didn’t make much of a difference.
Less than two months in, I was declining severely and reached my lowest point. My brain almost completely stopped working. Except for mounting an enormous effort to study once or twice a week, all I had the attention for was mindlessly watching YouTube videos. I couldn’t even read or focus on hobbies I once loved.
My body further declined too. My arms involuntarily tremored whenever I got agitated. I was having trouble steering during bike commutes. At my most severe, I had to put a lot of energy and effort into walking straight. I was horrified. My neuroscience internship just a few months prior taught me about the symptoms of Parkinson’s Disease, namely involuntary motor tremors. There I was, at age 20, displaying Parkinsonian symptoms!
This was the darkest period of my life.
My brain and body seemed like they were at the end of their shutdown. I was so overwhelmed by everything – by school, by learning about mold illness, by the unsuccessful housing search. I wanted the world to stop. I’d seen the devastation that mold can wreak on people, through accounts such as those on the Paradigm Change website or Dave Asprey’s documentary ‘Moldy‘. I feared I would become one of the super-sick people – bed-bound, or left unable to tolerate life in civilization and forced to spend my days camping in the desert.
For once, I was no longer optimistic about the future. There were no bright outcomes in sight. My old symptom reduction strategies were losing effectiveness. Bedroom blackout did not save me from waking up with my heart pounding multiple times a night, bedsheets drenched in sweat. Mindset tricks no longer worked now that I knew my house was killing me, with no escape in sight. My parents figured I should be just fine since the house had been remediated.
With this overwhelming hopelessness, I lost motivation to keep going and trying to better my situation. Some nights I would just lie down on the floor in utter defeat. I figured my motor control issues meant I’d probably be hit by a Mack truck or something while bike commuting. Heck, it happens often enough in Houston even to ‘healthy’ people.
An urgent escape
Luckily for me, fall break in mid-October provided a brief respite from Houston. I spent a few days back home in New Jersey. My parents started realizing something was deeply wrong when they saw me barely able to climb up the stairs. While I was still very sick, I felt a lot better than before. I regained a drive to find a way out of my situation. Luckily for me, I had booked an appointment some months before to see a Shoemaker-certified, mold-literate physician in New Jersey.
The physician provided information that explained my recent struggles. Remediated homes often remain problematic for mold-sensitive people. The remediation kills the mold, but this stimulates the mold to release a large amount of toxins, which are not usually addressed. These toxins can remain in the building and continue causing symptoms.
Bloodwork confirmed that I indeed was being affected by toxic mold. There is a characteristic pattern of blood markers for people affected by mold exposure. My active thyroid hormone (T3) and testosterone were indeed low. Elevated thyroid antibodies showed risk for autoimmune thyroid disease (mold toxins can trigger autoimmunity)! Mycotoxins can cause mental health symptoms like anxiety and depression. These are made worse when one knows their housing is moldy but has little control. Mindset can be a powerful tool, but may fall flat when physical factors overwhelm the brain with stress and inflammation. Additionally, I learned that mycotoxins can indeed cause symptoms resembling those from Parkinson’s disease.
Though I was still deeply sick, this validation gave me new hope.
There were people, physicians even, who understood this stuff! I could get professional help! Hearing an MD talk about biochemical effects of mold helped convince my parents that I had a real problem going on, not just psychiatric issues. With my newfound clarity, I realized I’d need to urgently take action to avoid my fear of becoming even sicker. My heart ached for those severely affected by mold. I realized being bed-bound or unable to live in most buildings is not a sign of weakness, but rather the unfortunate consequence of how toxic our world has become.
I was lucky. As a pre-medical student I already had some science background to understand the biochemistry behind mold illness. I had skills to search scientific literature for answers. Experiencing such a devastating decline drove me to work towards a better world for people affected by environmental illness. I realized that if I was ever going to be in a position to be able to help those people, I would first need to prevent myself from further declining.
I couldn’t have made it without my family’s support.
My father went back with me to Texas to help me ramp up the search for new housing. He also assisted with buying food and driving me to classes. In the meantime, I lived in a hotel for a month. Yet I soon ran into a problem – all the light from electronics in the room and coming in from the hallway that triggered my severe light sensitivity. The only place dark enough for me to sleep was the bathroom floor, lying on some thick comforters. To this day, I like to say that sleeping on the floor builds character!
The hotel wasn’t perfect, and I still brought (washed) clothes from the original moldy house with me. But it was better than my condo, and I stopped declining. My energy and brain function very slowly got better. It was a massive relief that my health was no longer spiraling downward.
A near miss
During this time I additionally saw a ‘mold-literate’ physician in Houston, popular because they accept insurance (which many environmental illness doctors do not). However, they gave me a Lyme disease diagnosis and an antibiotic prescription to be started immediately.
For a few hours, my Lyme ‘diagnosis’ terrified me. It wouldn’t have surprised me. Many mold affected people also have Lyme. And just a couple of months prior I had been bitten by fleas, which can carry Lyme.
But I soon became skeptical.
The physician said to treat mold before Lyme, but many physicians I’d read about said to treat mold before Lyme. An overload of mold toxins causing constant damage makes it harder for the body to fight off infection. Additionally, the diagnosis was based only on some uncertain IgG bands, none specific for Lyme bacteria. The appointment was barely 15 minutes, not enough to get a detailed list of symptoms to aid diagnosis.
I decided that something was not right. I never did fill that antibiotic prescription, for which I am grateful. Years later, I still have yet to show symptoms of Lyme disease. This is according to my current physician who treats Lyme patients and has had Lyme himself. Given the many side effects of antibiotics, taking doxycycline would have been the worst thing I could have done at that time. Antibiotics kill not only disease-causing bacteria, but damage the body’s natural bacterial microbiome too. This can cause problems such as immune dysfunction, digestive problems, and weight gain.
The lesson here is: think for yourself. Physicians offer well-intentioned guidance. Often it is helpful. But sometimes, it may be harmful. There’s even a word for this: ‘iatrogenesis‘. Don’t trust any single person without doing your own research, no matter their credentials. You are your own most important advocate.
An impossible search
The search for new housing was a difficult task. After Hurricane Harvey, many buildings sustained flooding or water damage, whittling down the number of potential options. I had yet to develop the strong mold detection abilities that many mold illness patients eventually do. I could only pick out very obviously bad buildings. During this time I also developed multiple chemical sensitivity. Thus, fragrances (common in open houses) could make me feel unwell even independent of mold.
I started researching the complex world of mold testing.
I quickly discovered that common air or swab culture tests can often miss serious mold problems. While all testing types cannot guarantee a building will be safe, the ERMI is the best test available. The ERMI looks at mold DNA in household dust. This has been clinically useful in predicting how safe a building is for someone with mold sensitivity.
For the most part, I could only assess buildings via ERMI tests. Sights such as visible water damage ruled out a place with no need for testing. I quickly learned that many buildings can look ‘fine’ with no visible mold or obvious smell, yet still have unsafe levels. In many cities such as Houston, buildings are built with moldy lumber, or are rained on during construction. They’re moldy before anyone even lives there!
The true best option for assessing housing is to first do a mold sabbatical in a pristine location very low in indoor and outdoor mold. After at least several weeks, the body becomes much better at sensing mold upon re-exposure and can detect moldy buildings within minutes. At the time, I didn’t want to take a break from my education to do this. But in retrospect, it would have saved me thousands of dollars on testing so many buildings.
The search dragged on for a month and I was losing hope.
Finding non-moldy housing in humid Houston seemed impossible, especially after Hurricane Harvey. I spent more time looking for housing than I did in my classes. ERMI after ERMI came back revealing potential options to be moldy. I seriously questioned if I could continue my education in Houston. More and more it looked like I’d have to take medical leave. Maybe I’d have to transfer to a school in a better location, which would lose me additional years of tuition and required course credits.
The lifelong overachiever student part of me resisted these ideas. However, I realized that health is the most important part of life and should be preserved, whatever it takes. After years of slowly dying, I would do anything to get my life back.
Sanctuary at last
After a month of unsuccessful searching, I was getting ready to call it quits. I started looking into my school’s paperwork for taking medical leave and asking friends who had transferred colleges about their experiences.
A single email brought an end to the despair. I’d just received the results of my latest round of ERMI tests. I wasn’t optimistic. Usually I opened these reports to find the building I’d been considering was off the charts moldy.
Yet this time, something was different. The ERMI score wasn’t incredibly high. In fact… were my eyes deceiving me, or was that a negative sign in front of the number? ERMI scores range from -10 (good) to +20 (bad). Dr. Shoemaker recommends CIRS patients live in buildings with ERMI scores no higher than +2. For extremely sensitive patients, his recommended cutoff is -1. I found myself staring slackjawed at a score of -2.44! While the ERMI isn’t a perfect test, such a low score certainly reduces the likelihood of problems.
The moldy hell that had started in August finally ended when I moved in mid-November.
After much research, I decided to leave almost everything behind. The only things I took were my school and government ID cards, along with some frozen meats in sealed packaging. I didn’t want to keep feeling sick from residual mold toxins on objects, which are difficult to eliminate completely. Nor did I want lingering mold spores spreading to grow in and ruin my new apartment. Yes, it was expensive to toss out all that stuff, but the lost productivity and medical expenses of chronic illness are costly too.
The night after my move-in, I breathed a deep sigh of relief. The hardest part of recovering from mold illness – leaving the moldy home that made you sick – was over. While my health was still not great, I immediately felt better. That night I slept more deeply than I had in months, and actually woke up with some energy! I was happy again, excited to start regaining my health.
I still had a long road ahead of me. In Part 4 I will go over beginning to detox from years of accumulated mold toxins, pursuing other therapies for recovery, and balancing managing chronic illness with life responsibilities.
Additional mold exposure symptoms (expanding on the list in Part 2)
- Night sweats
- Motor tremors resembling those in Parkinson’s disease
- Sense of utter defeat, hopelessness, and despair
- Low thyroid hormone (T3)
- Autoimmunity (or increased risk for autoimmunity)
- High cholesterol (especially LDL)
Interventions that did not help
- Standard mold remediation – this did not remove contaminated AC duct materials, contain dust and mycotoxins, nor clean mycotoxins on surfaces around the building
- Molekule air filter – there were modest improvements at first, but the sheer amount of mold spores and toxins overwhelmed the filter’s capacity. These are better for maintaining a place that’s clean to begin with.
- Mindset – I had to remove myself from the highly toxic home that was ruining my health before any positive mindsets could start working again. Otherwise, the knowledge of my housing slowly killing me was too much to bear.
Informational resources that helped me better understand mold illness
- Mold illness support groups on Facebook
- Paradigm Change website (along with the free ebooks)
- ‘Moldy’ documentary by Dave Asprey
- Biotoxin Journey website
- Surviving Mold: Life in the Era of Dangerous Buildings by Ritchie Shoemaker, MD
- Consultation with a Shoemaker-certified physician
4 Replies to “Pain from Environment – My College Health Journey, Part 3”
Thank you for sharing your experiences. I love reading about other people’s stories. I learn a lot from them that’s why.
Stella, I’m glad to hear you’ve enjoyed my story. It can be difficult to think about past experiences and traumas, but I do so in hopes that it can help others avoid or minimize similar suffering.
Thank you for sharing this journey with the world. I too live in Houston and we received a high ERMI score after trying to get to the bottom of my two year old’s chronic G.I. problems and encompresis. All of the allopathic pediatricians said it was something he would outgrow and recommended highly toxic Miralax. We have him Miralax for a couple weeks but out of desperation right around his first birthday. My gut was telling me to keep searching and to avoid toxins. We decided to give him magnesium powder to help him have comfortable stools and it helped a lot. In the meantime I kept searching for answers and decided to bite the bullet and take him to a functional pediatrician. After a few very expensive appointments and testing he was diagnosed with SIBO and CIRS. We got the ERMI results back this week and they are high for genetically sensitive individuals. Now we are at the fork of either trying to sell our home (knowing that many people will not react to the levels of mold) or remediating. Right now I’m having a very difficult time finding mold testers and remediating professionals that are familiar with mycotoxins and illness related to species other than the well-known black mold.
It is so refreshing hearing others’ experiences with mold. I feel like the crazy mold lady who others see as going overboard.
Much love and prayers to you. I hope you will spend your medical journey blessing others with your personal mold experience.
Hello, so sorry for the late reply. I’ve not been great at keeping up with comments but working on improving this.
My conclusion after 4 years in Houston – it is uninhabitable with someone for mold illness. Even in a good apartment one must still contend with severe outdoor biotoxins as well as virtually every public buildings being moldy. Best to move somewhere else.