Janis Bell (JanisB) reviews her personal journey of chronic illness after being inspired by a new article written by Jill Neimark and appearing online today in Discover magazine. It highlights the work of Dr Claudia Miller (pictured) and her theories relating to extreme chemical sensitivity and toxicants, a condition she terms, Toxicant-induced Loss of Tolerance or TILT.
By the time I finished Jill Neimark’s “Extreme Chemical Sensitivity Makes Sufferers Allergic to Life,” (November 2013 issue of Discover Magazine – available free and online today), I was reconsidering my own story, the story I tell myself about the illness that changed my life.
Jill explains the groundbreaking theory of Dr Claudia Miller (pictured), a physician and environmental health expert, and writes:
“Miller studies a phenomenon she calls Toxicant-induced Loss of Tolerance (TILT). The word toxicant refers to a man-made poison, such as Dursban, whereas a toxin is a naturally occurring poison produced by living cells or organisms, such as spider venom.”
TILT happens when a susceptible individual gets sick after toxic exposures and then, instead of recovering, stays sick.
Maybe that sounds like your story, but instead of chemical exposure it’s a tick bite, an unknown virus, a moldy house or workplace, or a traumatic event.
I certainly felt it applied to my own descent into chronic illness, and as I read the article I thought carefully about my journey in a very new light – even though Miller’s research and Jill’s article, deal mainly with chemical sensitivity.
TILT is believed to play a role in neuroendocrine diseases such as Gulf War Illness, and I couldn’t help but wonder what kind of role it might play in ME/CFS.
Reappraising my life…
For years my story appeared straightforward – a sudden onset virus, that hit on the first Saturday of May 1987, led to chronic symptoms and no recovery. It changed me from an upwardly mobile professional to a downward-spiraling searcher of anything that would restore me to health.
Over the next two decades, the name of my condition changed as did the clueless physicians I travelled to see, and the all-too-confident alternative practitioners whose fees ate into my meager income.
While mainstream physicians waited for the virus to be identified by researchers and offered drugs for symptomatic relief – most of which I couldn’t tolerate – I immersed myself into research on nutritional, herbal, and energy therapies.
Was I too toxic? Was I allergic? Perhaps deficient in some vitamin or antioxidant? Maybe full of parasites or infected with candida?
Over the years, symptoms disappeared and new ones emerged. I experienced hope and disappointment. I was lucky to have three glorious periods of almost total recovery, until they ended within a few months in crushing relapses, each one pushing me lower on the Bell Disability Scale and giving me new challenges to deal with.
I tried to understand what caused each relapse but my story didn’t change significantly until I read Martin Pall’s “Explaining Unexplained Illnesses” and learned how all of my extra diagnoses were connected by a vicious cycle of oxidative stress.
Pall explains how nitric oxide and peroxynitrite, abbreviated NO and ONOO (like Oh! no!) damage cell membranes. The membrane is the “brain” of every cell as it decides what nutrient and messengers come in and what toxins and metabolites get out. He himself had CFS for many years.
Through extensive reading as a biochemist at the University of Washington, Pall discovered that the NO/ONOO cycle, which is elevated in acute infections, becomes locked in that elevated state, interfering with cellular functions.
I ordered the anti-oxidant supplements he recommends from Allergy Research Group/Nutricology, and I bought home test kits (Oxidata test kit from Apex Energetics) to monitor a urinary marker of oxidative stress known as MDA (Malondialdehyde), so that I could see if the antioxidants were doing anything for me.
I’ve learned over the years that most of the things that happen to me don’t show up in medical tests, but my scientific curiosity won over me. Would MDA go up when I felt worse and down when I felt better? There did appear to be a correlation: I felt a little better when I moved MDA into the low range.
Yet Dysautonomia/POTS, my most disabling symptom, together with PEM (Post-exertional Malaise), persisted with the tenacity of a pit bull. I was far from recovered, and far from the highpoints of remission I’d experienced in the past.
Another influence on my own story came after reading Ritchie Shoemaker’s, “Surviving Mold”, while on a family trip to Costa Rica, lying in bed with a view of the Arenal volcano. After I laughed about having “first year medical student syndrome,” we uncovered a coating of the fuzzy black stuff on my bed frame and the underside of my mattress.
We hurriedly checked out and moved into a breezy room at the beach. Within a few days, I could participate in conversations again. By the end of our stay I was walking to nearby restaurants.
When I returned to the States, Dr Vinitsky (Enlightened Medicine) told me I had biotoxin illness as well as a few other opportunistic and causative pathogens no other physician had found, including Lyme disease.
Thoughts about mold pushed the onset of my illness back to 1982, at a time when I took a teaching job at Kenyon College and was assigned an office in the modern Biology building.
It was, I felt, the combination of windows that didn’t open, research animals in the basement, central air, and damp weather, that combined to spread mold spores throughout the building and into the air I breathed all day.
I believed I had the classic respiratory onset, then endocrine and immune issues, all preparing the way for that 1987 virus to knock me down.
When the ERMI (Environmental Relative Moldiness Index) test for mold in my current house came back with a high score (ERMI analyzes dust for fungal DNA and gives a score relative to other US households), we found mold in the basement under the crawlspace batts.
Survivors online warned me that remediation rarely worked for people like me. Still my partner valiantly tried to save the life we knew, replacing and cleaning and sealing off the affected areas around the house.
I would make a little progress but then crash again, reacting more and more violently to dust scattered in the air from his latest cleaning endeavor.
In desperation, we contacted the remediator in “Surviving Mold”, the book that had become my bible, and took his recommendation to fog the space with Aerosolver. Even though it was custom made for my sensitive body, with ingredients I used in tinctures and eyewash (glycine and borax), it did me in and less than two months later, I was in the car heading out west, my loving partner left to deal with the wreck of our lives.
My attempt at escape…
Although many people online suggested I go camping, I never seriously considered it until the emergence of this crisis.
My partner had been an avid backpacker in his twenties and thirties, yet whenever he suggested a camping trip Christine Lavin’s lyrics to her song, “Camping,” would run through my head:
“I’ve got stars on my ceiling that glow in the dark,
I’ll open up the windows we can hear the birds in the park,
I’ll put Wild Kingdom on my TV…
This might not be camping but it’s close enough for me.”
Nevertheless, camping is what I ended up doing when other accommodation I tried to rent affected my health even more.
The camping lifestyle is difficult, yet I never regretted my choice. As symptom after symptom lessened or entirely disappeared, I put up with the hard ground, the cold, the heat, wind, the endless packing and moving, the whiffs of a neighbor’s cigar or cigarettes, the lousy WiFi, the inadequate cell phone service, the dirt, the noise, the diesel fumes of a one ton pickups and large motor-homes.
And I complained whenever the cold wind ripped through my jacket or the rain left me huddled inside dripping nylon walls.
When my most disabling symptoms, PEM and POTS, began to clear in that low mold environment, I often thought, “Maybe all I have is mold illness, not ME/CFS.”
Yet my ME/CFS diagnosis was sound, and approved by specialists. I’d met the Canadian Consensus Criteria and had been a subject for research studies.
I felt there was an association between symptom onset and exposure. And it was interesting, if painful, to witness how certain exposures could suddenly bring on POTS and PEM again, but also satisfying when I experienced the relief as they went quickly away.
Reading about Dr Miller’s theory of TILT, I found myself re-thinking the crisis that sent me in exile from my house and the community where I’d lived most of my adult life:
What made me react to buildings?
Why had my sense of smell become dog-like in its acuteness, picking up fabric softener on a woman across the room and food smells long after a meal had been cooked?
Did everyone who left a moldy house have to go through this misery, and if so, why didn’t Shoemaker mention it?
It perplexed me that, while camping in the desert, I now seemed to be more reactive than I ever was back in Ohio. I had traded a disabling illness for one that left me as isolated and in my worst periods of relapse. I was spending too much time on survival and not enough on productive, joyful activity that could help me heal.
I wanted a unit like the one Jill described in her article and that Dr Theron Randolph had created for his own patients. These specially constructed units with filtered air, cotton bedding, and purified water, allowed patients to improve enough that he could test them to find out what was making them sick.
Willliam Rea of the Environmental Health Center in Dallas, houses his patients in similar rooms, but I was deterred by the expense, as well as the fact that my exploratory trip to Dallas had been a disaster (an experience I describe in this blogpost from October 2011 ).
Camping was the closest I could get to an Environmental Control Unit.
“Why am I more sensitive?” I asked Dr. Rea on my initial visit. He pointed to a diagram of a barrel filled with toxins until not one single drop could be added without spilling over the edge. “But I had more toxins in my house in Ohio!” I protested and left feeling very misunderstood.
The toxic load theory of chronic illness was not unfamiliar to me. I had read the book from Dr Sherry Rogers, a former patient of Rea’s, who had said, “Detox or Die”. But what did any of this have to do with ME/CFS?
I and my friends were reaching the end of our patience. We had tried every classic detox protocol – juice fasting, liver cleanses, raw foods, sauna, and heavy metal chelation – with little or no noticeable benefits.
Worse, my experience with juice fasting at Dr Gabriel Cousens’ Tree of Life Rejuvenation Center had brought on my second relapse.
Yet there appeared to be some connection. After living in a tent for just over a month, I could tolerate CSM (Cholestyramine), the second step of Shoemaker’s mold illness protocol, although I had yet to benefit from its binding of fat soluble toxins.
When I met with Dr Scott McMahon eighteen months later, my Visual Contrast Sensitivity had greatly improved from the reduction of systemic mycotoxins and other toxins that CSM, charcoal, and bentonite pulled out. Maybe Scott knew why I was hypersensitive?
“We don’t know why some people develop MCS [Multiple Chemical Sensitivity],” he told me honestly, “And we don’t really know what to do about it.”
I braced myself on the edge of my seat as I waited for his answer to the next question, only relaxing my grip as I heard his encouraging words,
“Some get well when treated for mold illness.”
Phew! Maybe I was on the right track.
People with MCS, according to Dr Miller, are TILT’ed
We are more sensitive to minute amounts of things that others tolerate with little or no problem. Sure, all these toxicants and toxins eventually catch up to some people, but they can stand at a bus stop in Manhattan or LA without getting congested, losing their balance or becoming suicidal.
Dr Miller has proven that our sensitivity is real, validating the physical changes through publications in peer-reviewed journals. So why am I finding myself beset by gloomy thoughts as I get to the end of Jill’s article?
A few sentences are running through my head on repeat:
“…instead of recovering, the neurological and immune systems remain damaged…”
“Once genes are switched on […] and once you are sensitized, you essentially have a reprogrammed cell…”
No, no, NO! I’ve been clinging to the hope that someday I’ll live in the world again, go to stores, go to parties. This camping thing has got to end!
I try not to dwell on the thought that I might always be living on the edge, vulnerable to the next exposure, a semi-hermit in our toxic world. But gloom settles into my bones.
However, I remember that Lisa Petrison (Paradigm Change), an ME/CFS survivor who recovered her life through mold avoidance, once told me that nearly everyone is hypersensitive at first, but if they stick with a program of avoidance, they eventually improve.
I mentally compared the intensity of my reactions in the past and my reactions now and noticed a slight improvement.
I contacted Jill to clear things up. Yes, she says, Dr Miller argues that we’ll always be more vulnerable than a undamaged person, but we can recover with proper avoidance.
Dr Miller herself was inspired by Randolph’s work because she saw people getting well in those non-toxic chambers as they unmasked and eventually were treated for their specific sensitivities.
She believes isolation from toxicants is key to healing and, in her blog, Dr Miller writes about how to help veterans with Gulf War Illness:
“The single most important task is to sort out and “unmask” the causes or triggers for their symptoms. This requires an environmental medical unit, or EMU. Congress once endorsed EMU research for the Gulf War veterans but never funded it. Only a few EMUs exist in the world. They are environmentally controlled in-patient hospital units designed to isolate patients from exposures that set them off.”
This encourages me in my plans to find land and build a non-toxic, healthy home where I can avoid mold and other toxicants.
Since Dr Miller isn’t a clinician, the article did not go into therapeutic approaches beyond avoidance of toxicants and toxins. Yet Jill’s summary on the path of toxicants – through the olfactory nerve in the nose and directly into the limbic brain – got me thinking about therapies for the limbic brain that have allegedly benefited patients with MCS and ME/CFS such as Gupta’s Amygdala Retraining and Hopper’s Dynamic Neural Retraining. Individuals swear these approaches made a profound difference to their health.
My own preference for “mind-control” is yoga. Since Jill’s article mentioned one patient who recovered from electo-shock therapy, a treatment used widely in the past to change the brain chemistry of depression, I hold to the belief that we can mobilize and direct the electric patterns of our brains through our thoughts. For millennia, yogis in India have defied the tenets of modern science by walking on hot coals, warming a circle of snow with their body heat, and stopping their hearts – as have Christian mystics.
Then I find myself wondering if toxins (made by nature as compared to man-made toxicants), shift a body into TILT in the same way as toxicants.
Can fungal, bacterial, and viral toxins provoke neurological and immune system damage that persists even after the offending organisms have left?
Could these infections set up an inflammatory response which gets locked into place and becomes chronic, due, in part, to a vicious cycle of elevated NO/ONOO?
Bodies damaged by toxicant exposure (Gulf War Veterans, Gulf oil spill workers) get opportunistic infections just like those of us with ME/CFS as well as those infected by chronic Lyme Disease.
Are you at risk of Toxicant-induced Loss of Tolerance?
If you think that as you can live in a house and can tolerate a few medications, you are not at risk of TILT, think again. Maybe you remember some doctors who judged you as malingering when you reacted to one medication after another. Maybe family members or former friends think you are crazy and overreacting because you seemed fine one day and complaining of misery the next.
I recommend you give them a photocopy of Jill’s article, “Extreme Chemical Sensitivity Makes Sufferers Allergic to Life,” so they can see that there is scientific validity for TILT. You might just be too masked to see what you are reacting to.
According to Dr Lisa Nagy, a survivor of mold illness and TILT, and now an advocate for the environmentally injured, 60% of CFS patients have chemical sensitivity. If you react to supplements or to standard doses of medications, chances are you have more sensitivity than you realize.
If I’d understood the value of Dr Claudia Miller’s QEESI questionnaire, I would have known before using Aerosolver that I was among the 12% deemed vulnerable enough to go into full TILT. My doctor could have advised me to avoid the risk because it was just too great, and I could be healing from mold now in a nice house or condo in the desert city of my choice.
My friends and blog followers, if you have ME/CFS, be careful to avoid going into severe TILT.