Searching for a Theory

 

(The following is an excerpt from my paper "Solving the Riddle of Chemical Sensitivity: The Importance of TRP Channels," which can be downloaded from the home page of this site.)

 

...Ultimately, the most upsetting aspect of MCS is that is so little known and even less understood.  It has never been recognized as a legitimate illness by the American Medical Association. The condition does not show up as an abnormality in the usual diagnostic tests, it only presents itself in the subjective experience of the patient.  This leaves those of us who suffer from chemical sensitivity caught in a Catch-22:   Mainstream medicine will not recognize MCS without objective evidence, but in order to investigate and find that objective evidence, they must first be willing to recognize that the condition exists.

 

A scattering of alternative doctors affiliated with the American Academy of Environmental Medicine do specialize in “treating” MCS.  But those doctors are few and far between, and often operate on a cash only basis as insurance companies don’t recognize the condition, let alone pay for treatment.  Furthermore, most of these doctors seem not have any true knowledge of what causes MCS, merely a vague web of theories that the body is suffering from a detox pathway impairment. The few existing books on Multiple Chemical Sensitivity tout the “bucket theory” of MCS, an idea made popular in the 1980s and 1990s, which says that one’s system becomes increasingly overloaded with chemicals and toxins and stress until it reaches a tipping point that tilts them into the condition.  But that theory never made sense to me.  If it was true, then a combination of detoxing, chemical avoidance and clean diet should eventually reverse the condition.  But I could find few accounts of people claiming to be ‘cured’ from MCS by detoxing.  Many MCS sufferers had been living clean and detoxing for decades and yet continued to suffer reactions when exposed to chemicals.

 

Still, despite a lack of solid results, the standard treatments from MCS specialists typically focus on detoxing measures such as saunas, and/or managing symptoms in a way that may or may not actually worsen the condition.  For example, “provocation and neutralization” is an involved and often traumatic process that purposely elicits reactions to a substance in order to find the so-called “neutralizing” dose of the substance.  But in a survey of 917 MCS sufferers published in 2003, only 45 percent of those who’d tried it said the treatment was helpful to them, while 28 percent said it had no noticeable effect, and another 25 percent experienced it as actively harmful to them.  My visits to the one specialist in my state were comforting in that the staff at least validated my experience and confirmed my diagnosis, but those visits rapidly depleted my bank account and did absolutely nothing to relieve the severity of my symptoms.

 

I felt hopeful when I discovered a supplement protocol for MCS from Dr. Martin Pall, a professor of biochemistry and medical science, who in 2007 published his theory of a possible mechanism underlying MCS, as well as fibromyalgia and CFS, or chronic fatigue syndrome.   He hypothesized that in this commonly co-occurring cluster of conditions, the body became trapped in a feedback loop he called the “NO/ONOO Cycle,” in which too much nitric oxide (NO) in the body degraded into peroxynitrite (ONOO), causing oxidative stress and inflammation, which then created more nitric oxide and so on. 

 

Although I was taking a good number of the supplements he recommended (including magnesium, which I had started taking in the month before I started going haywire), I immediately ordered everything else on his list, and was soon swallowing up to 25 pills a day.  But after several months, I found no improvement in my symptoms. Internet searching turned up only a few accounts of benefits from the protocol, but many more forum posts that it hadn’t made a difference.  Even Pall himself wrote in 2010 that, while he still believed in the merit of his theory, his supplement protocol hadn’t led to many reversals of MCS.

 

Almost all of the stories of MCS reversal I did find online had been posted by the few people who claimed absolutely certainty about the cause of MCS.  Ashok Gupta, the director of a clinic in the U.K., and Annie Hopper, a counselor from Canada, both contend that MCS  -- as well as fibromyalgia and CFS – results from faulty neural wiring in the brain,  either in the amygdala (Gupta) or limbic system (Hopper).   Both describe a “trauma loop” in which the brain incorrectly perceives threats, then releases stress chemicals into the body which then trigger more symptoms and reinforce the loop.  Both market programs for brain rewiring and limbic system or amygdala retraining, and both have passionate advocates.  And Dr. Claudia Miller, one of the few authorities on MCS (which she calls Toxicant-Induced Loss of Tolerance or TILT), seemed to confirm the brain impairment theory in a November 2013 article in Discover magazine.

 

I didn’t hesitate to order both Gupta and Hopper’s brain retraining programs and as I watched the DVDs, I was already planning my own giddy testimonial of how I’d been cured of my malady.  But while I definitely found their techniques helpful in dealing with my symptoms (especially Gupta’s), and even lessening them to a degree, I was not able to completely reverse my symptoms.  The temptation was to blame myself, to scold myself for not doing it “right,” but I found online accounts from others who could report similar improvements, but no complete reversal after many months of effort. 

 

Ultimately, I found the brain impairment theory did not particularly match my experience.  f my brain was mistakenly repeating a trauma loop that was triggered by the smell of harmless chemicals, then why did I experience symptoms from chemicals I couldn’t smell at all?   And why did I experience my worst symptoms from certain foods?   I might not even know I had eaten an offending food until my headache and swelling face made me pay attention and go figure out what the culprit was (it was always some form of salicylate). That indicated to me that the “mistake” began before my brain took over the interpretation of it.  However much faulty brain wiring might indeed be exacerbating or perpetuating my symptoms, I felt certain there had to be a deeper physiological cause and dysfunction in my body....  

 

Next:  Discovering TRP Channels

By Teena Booth