Wednesday, December 14, 2005

Dr. S. vs. The Masked Avenger

I recently found myself in a reckless argument over the phone with a doctor I'd never met. We were arguing over a diagnosis that I have believed for ten years applied to me. The argument was not so much about whether the diagnosis applied to me in particular, but whether it applied to anybody. The doctor was the highest authority my HMO, Kaiser Permanente, had to offer on the subject and it was refusing to allow me to see a specialist outside its walls. As it happened, the doctor was a woman with a rather thick Slavic accent. She seemed to miss the point of the more nuanced communications I attempted, but in the end I'm sure the barriers to our understanding had nothing to do with language.

Honestly, I liked Dr. S. for the direct simplicity and emotional engagement she brought to the table. She was refreshing in comparison with the standard-issue stuffy whitemale of advanced years who had written "this is not a proven entity" in my medical chart at the local facility. I was glad to know that she had triumphed to become a "Chief of Chiefs" in the Kaiser allergy world while he was only the leader of a small enemy band relegated to treating denizens of the inner city. He would never have had it in him to concede amiably, as she did at one point, "You were right, I am not your friend." I felt she spoke not just for herself but for the American Board of Allergy and Immunology, whose authority she invoked more than once.

The diagnosis over which Dr. S. and I were pointlessly arguing is Multiple Chemical Sensitivities (MCS). Somewhere around 4% of the general population report that their lives are seriously disrupted by abnormal sensitivities to molecular and particulate substances that we all breathe in on a regular basis. (New prevalence estimates) Currently, some of my least favorite inhalants are perfume, mold, smoke and diesel exhaust. I dislike synthetic chemicals, perhaps partly on principle, more than naturally-occurring substances. However, I can't live in a musty old house, or one shared by a cat, any more readily than I can live in one that has the "new" smell of volatile organic compounds wafting off its surfaces. Often the illness is initiated by an exposure to a toxic chemical. My original trip through the looking glass followed a roommate's use of a spray pesticide, Raid Flea Killer, that she had picked up at the grocery store.

One of the reasons many doctors can't accept the concept of MCS is that sufferers describe having debilitating symptoms in response to extremely low levels of airborne irritants--levels far below those considered safe. Out of their sympathy for me, most people I know relate some personal experience of intolerance to chemicals. Someone at their office wears too much perfume or they can't stand to drive behind a bus. While I appreciate these attempts to understand, and while good air quality benefits us all, my experience since I became ill seems qualitatively different. When I'm at my worst, catching a whiff of the most discretely applied perfume can feel like being dunked in a vat of it. I'll get an instantaneous headache. If I don't get away from the stuff I lose focus and get disoriented.

Dr. S. herself gets a little fuzzy at the office as her day wears on, something she attributes to less-than-stellar air quality there in the Allergy Department. She can "tough it out," a strategy of which she suggested I make more use. I think of this as the "just get over it" approach. It is the polar opposite of the strategy of avoidance, which people who have MCS overwhelmingly report to be the most effective treatment for lowering their sensitivity. (Treatment comparisons) If I tough it out one day I'll be more easily set off the next. If I tough it out for a week I may wind up with round-the-clock symptoms and reacting to everything under the sun. The recovery process is slow, unpredictable, and, so far, always incomplete.

I don't believe that the lack of a well-understood physiological basis to MCS is the primary impediment to its recognition by portions of the medical community. A thornier issue is the subjective nature of the illness. There's just no test available to prove someone has it, at least at this point. I look reasonably healthy, if a little pallid and skinny. Related health problems, like osteoporosis, might not, in fact, be related. Who's to say I'm not making it up or that it isn't all in my head? What's to keep healthy people from claiming disability benefits or redress for discrimination, or from seeking unnecessary health care or workplace accomodation? While I can testify to the fact that there is ample disincentive for anybody, sick or well, trying any of those things, it's still a legitimate question.

Now the task of pronouncing a patient delusional or fraudulent is generally left, in the end, to a psychiatrist or a psychologist. Subjectivity is the nature of their business. A wide variety of theories of psychological causation for MCS has been advanced in the scientific literature by eminent people. The theories are often in contradiction to one another and all are countered by theories of physical causation advanced by equally eminent people. The backing of interested parties with money, notably the chemical and pharmaceutical industries, tends to favor the former and the somewhat more limited resources of the patients tend to favor the latter. (Chemical industry expose) Dr. S. floated the idea that I and my ilk might be "paranoid" and touted psychotherapy (not that Kaiser was offering me any).

I'd seen the writing on the wall and abandoned the local allergist before he had gotten around to such a conclusion, but with Dr. S. I foolishly charged ahead. I argued that far from being resistant to psychotherapy I had derived great benefit from it and, in fact, had become such a fan that I was now a psychotherapist myself. Could it be that I had chemical sensitivities in addition to whatever neuroses afflicted me? Dr. S. suggested, in a patient tone, that therapy often went better for people if they didn't try to perform it on themselves. I struggled to correct this misimpression, lest it wind up in my record, but I gave up arguing for my open-mindedness, or, for that matter, my sanity.

Citing the scientific literature generally proves equally futile in these situations, but I still couldn't let things rest. I recommended to Dr. S. that she look into the most scholarly book on MCS of which I'm aware, Chemical Exposures: Low-Levels and High Stakes by Nicholas Ashford and Claudia Miller. (On She had never heard of it and lamented that patients sometimes located books in health food stores that could be misleading. "The Journal of the American Medical Association recommends this book," I argued as Dr. S. angled to get off the phone. I can't blame her if she doubted this last point. I'm sure she knew, as did I, that the American Medical Association was not my friend.


Lynn said...

Drear Masked Avenger, I read your post with a nodding head and a spark of hope. At least our stories are coming out, even if they're hard for most to believe, nevermind understand.

Here's a bottle of purified water to celebrate the birth of your new creation. I hope it offers healing and inspires others in return.

Looking forward to more....

Stormchaser-League of Toxic Amenders

Anonymous said...

Hello, it is good that you are letting people learn about mcs with your blog. I think there needs to be more awareness about how chemicals can injure people. Best wishes always,
a fellow mcs woman

Ralf said...

Hi Masked Avenger. I'm a fellow sufferer of MSC. I've been struggling with chemical sensitivities for years and years as well as increasingly severe food allergies, chronic fatigue and musculoskeletal impairments. After an exposure to new fiberglass insulation in our attic this winter my symtoms of food allergies and intestinal distress got extremely severe. I've tried various things over the years to help me from different naturopaths to no avail. My level of sensitivity to chemicals is so strong, things like cleansers and any kind of finishes, etc, that I've worked hard to make my house a haven from exposure. I stumbled upon a few books by a doctor in Idaho recently who has suffered from and treated herself successfully for MSC and severe food allergies. I started working with her six weeks ago on a rather grueling program of detoxification using as a foundation, colonics as well as other supplements and detox regimens. So far it's been pretty brutal. I've been very ill, weak, and debilitated. But I think I'm starting to feel better, at least as far as the stomach upset things go. This is not a quick fix program. If it's successful, and this doctor swears she has successfully treated tons of patients from this, it's gonna take some time. I've been struggling with this stuff for twenty years, so it's not going to get better right away. This whole blog universe is new to me. After reading your comments I set up my own blog on this site. I've been feeling pretty isolated and wanted to connect with other folks suffering through this nightmare. Any feedback would be appreciated. And if I can get healed from or at least substantially better I'd love to pass that on to other people looking for help.

Wishing you good health and ease


The Masked Avenger said...

I'm happy to give you any feedback you'd like, but it's a little like the blind leading the blind as I am a newbie in the blogosphere myself. Let me know what the address to your new blog is.