Interview With a Toxic Mold Survivor: Dr. Janis Bell
I didn’t see the pattern and thought it was the homeopathic remedy. However, I do remember thinking often “There is something here in the air that isn’t good for me.” The following year, my health continued to decline…. I remember having frequent colds and sinus infections and developing many allergies. I was tested at the nearest University Hospital and told that, since I reacted severely to everything, there was nothing an allergist could do to help me. So I was essentially abandoned at that point by the medical profession. Three years later, some virus went around campus that affected my central nervous system. I was diagnosed with Chronic EBV, which today is known as ME-CFS.
In our continuing efforts to let the victims of toxic mold speak, below is an interview I conducted with Dr. Janis Bell, an Art History Professor, whose mold illness began at work in her college and progressed from there. Her story demonstrates that consistent exposure to mold will negatively impact one’s immune system. Dr. Bell is now 63 and has suffered for more than 30 years. Many thanks to Janis and the interviewees before her (Gina Lopez, Raffaella Tassone, Kelsey Best, and Elaine Kelly) for sharing their stories with us. Awareness is our goal and hopefully these survival stories will lead to positive change to help future toxic mold sufferers get treatment quicker.
1. When did you move into your current apartment or home?
I left my house in Sept 2011, camped in a tent for a year, and now camp in a small travel trailer.
2. How many years have you lived there?
Before disrupting my life, I lived in my house for 11 years.
3. How soon after you began living there, did you begin to feel sick?
I was already sick. I got sick when I started working in a sick building where, even with a dehumidifier running all summer, mold developed on the slides in our library.
4. What were your symptoms?
Classic pattern described by Shoemaker in his book, Surviving Mold. My first year teaching at this college, I developed chronic bronchitis. It went away the weekend I left town for the summer. I thought it was ‘stress’. The second semester I had one infection after another: tonsillitis, strep throat, sinusitis, every two weeks. By the end of the year, my thyroid went and I was diagnosed with autoimmune hyperthyroid disease. When I left town for the summer (after consulting a homeopathic medical doctor), I spontaneously ‘recovered’ and became euthyroid. I didn’t see the pattern and thought it was the homeopathic remedy. However, I do remember thinking often “There is something here in the air that isn’t good for me.” The following year, my health continued to decline but I was able to take better care of myself because my 5 year old daughter went to live with her father. I remember having frequent colds and sinus infections and developing many allergies. I was tested at the nearest University Hospital and told that, since I reacted severely to everything, there was nothing an allergist could do to help me. So I was essentially abandoned at that point by the medical profession. Three years later, some virus went around campus that affected my central nervous system. I was diagnosed with Chronic EBV, which today is known as ME-CFS.
My symptoms then became swollen glands, orthostatic intolerance, paraphasia, declining executive functions, short term memory loss, mood disorders (mostly depression), muscle weakness and inability to exercise. As this virus became inactive over the years, I had a tick bite and, in less than a year, was unable to work. My symptoms became all over body aches, insomnia, mood disorder (anxiety, anger), fatigue, unstable blood sugar. I improved twice and relapsed twice, adding new symptoms each time I relapsed.
5. How many Doctors did you consult with?
Wow, hard to count. I went through three local family practice doctors plus the campus physician up to the time I came down with ME-CFS, plus two endocrinologists and two homeopathic MDs. That’s 8. After the ME-CFS diagnosis, I worked with a kind, informed doctor at the University, two holistic MDs, 2 heart specialists, one dysautonomia specialist, one rheumatologist, and a family practitioner: these were all local. I also traveled for medical care, including one week at a clinic in Tijuana and a month in Nevis with a naturopath, several weeks in Quakertown, PA, and repeated trips to Manhattan and Washington, D.C. I consulted ME-CFS experts in three states. I went to a number of holistic practitioners who were not doctors. And I finally took training courses to become a naturopath in order to better help myself. I guess that totals 28 medical doctors plus a bunch of naturopaths, energy healers, herbalists, and nutritionists. Well, I just remembered another four since the CIRS diagnosis and the onset of MCS.
6. How helpful were the Doctors you consulted with?
Not very. Some did a lot of tests and found nothing. Others tested and found many things out of range but rarely was I able to correct enough of them with their supplements and medications.
7. Did any of your initial Doctor visits consider mold or air quality as a cause of your sickness?
8. When was mold identified as the cause of your sickness?
It was very late in the journey: the winter of 2010-11 because I didn’t respond to the methylation supplements the way he thought I should, and he had taken a seminar with Dr. Shoemaker. So he ran many of the recommended screening tests for biotoxin illness, and I had all six of the biomarkers in a condition where having 3 of them is sufficient for diagnosis.
9. What treatment are you currently under?
Avoidance mostly, plus an antifungal nasal spray. I got mild benefits from nebulizing glutathione, but they didn’t last and I’m rarely motivated to go to the trouble now. I wasn’t able to tolerate VIP, and I stalled at the Desmopressin step in Shoemaker’s 13 step protocol because I couldn’t increase to the recommended dosage. I was hoping to resume taking it this spring, but it seems things keep coming up. Since Medicare wouldn’t pay to retest those markers, I don’t know if ADH and osmolality have stabilized. I know only that frequency of urination has returned to something closer to normal than in 30 years. Recently, I’ve had experiences of sleeping through the night. My PEM is gone; so is dysautonomia. My digestion and elimination have improved. But I can’t go into any buildings, not even a friend’s house, or my symptoms return with great intensity. It limits my life even more than before.
10. How long do your Doctors think it will take to recover?
No one has predicted that it’s even possible. What would recovery look like in a 63 year old who got sick at 33? I don’t know what that is. My hope is that my sensitivity will reduce enough to freely attend cultural events, go into other people’s houses, or visit a library to consult books for my research. I’d like to travel back to Italy and finish some of the art history projects (books) that I started before I got too sick to work.
11. Any other thoughts?
I think the most important thing with this illness is finding housing and good fresh air. Too many of us cannot tolerate the tiniest amount of mycotoxin or mold spores. We need pristine living conditions with fresh air devoid of chemicals and VOCs and electro smog. It is hard to find places like this in our toxic world. Even at primitive campsites in the mountains and at the seashore, people are burning wood in campfires and polluting the air. To recover from this damage to the neuro-endocrine-immune systems, people need places to live and heal. I wish we could institute something like the sanatoriums they used to have for people with tuberculosis in the 19th century.
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— #GotMold?™ (@gotmoldglobal) July 23, 2014