Relegated to the Quacks: The Reiterative Function of Medical Dysfunction

Much ink has been spilled on the topic of the legitimacy of what many consider the “trendy” modern maladies, including Lyme disease. I contracted Lyme a little over a year ago in a non-endemic area in western Utah while working on an archaeological project, and was diagnosed about seven months later by a plucky physician’s assistant who had the unprecedented courage to order a serological Lyme test in a place where it supposedly doesn’t exist. I hope his boss never finds out… Anyway, the circus that I endured both before and after diagnosis prompted me to investigate the Lyme phenomenon from every possible angle, a task made much easier by my being a graduate student with access to medical research journals (they don’t like the public to be able to see those). The point of this article is a narrow, forceful attack on how sufferers of elusive maladies like Lyme are treated by mainstream medical practitioners and the impact this has on both the patients and the maladies themselves.

During the months I spent enduring horrific mental, emotional and physiological symptoms before diagnosis, during all but the last few weeks of which I did not have health insurance, I was treated to a hilariously ingratiating cavalcade of white-coated clowns demonstrating various levels of ineptitude, the most delightfully quizzical of which took place at Flagstaff Medical Center (FMC) in Flagstaff, AZ. I was admitted with (as usual) severe dizziness, cognitive dysfunction, heart palpitations, chronic headache unresponsive to pain medication, twitchiness, jumpiness, insomnia, overwhelming fatigue, stomachache and occasional nausea, mild fever, and “tracers” in my vision that reminded me of when I took LSD as a teenager. The doctor in the ER listened carefully to my symptoms, had a look at the pile of blood tests and heart tests and whatever all else I carried in my little medical folder, and then launched into a pejorative rant about the dangers of medical trends.

“There is no reason to test for Lyme disease because it doesn’t exist here; everyone thinks they have it because they saw it on CNN or something. And I’ll bet people have also suggested you might have a food intolerance? Or a yeast overgrowth? Or fibromyalgia or chronic fatigue syndrome…?” I nodded – weakly – and he nodded back, his bearded face suddenly looking less professional and more menacingly cocky. “It is extremely frustrating how we doctors have to deal with these trends. People see something on TV, and *bam* they think they’ve got it. And when we legitimate doctors try to tell them they don’t have these conditions, then they go and find ‘alternative’ witch doctors and snake oil salesmen who tell them they do. I blame it on the internet… Why, back in my day…” And on it went. After I’d sat in considerable pain and misery listening to this diatribe against the dangers of trends, I finally heard his diagnosis: anxiety/depression. Full stop. His advice was for me to drive back to Page (two hours away, in the dark of night, while unable to focus my eyes or stop shaking or remember what road signs mean, thus making his advice not only unethical and very stupid but also criminally dangerous) and start seeing a shrink.

This same story has – with alarmingly little variation – been repeated over and over again among sufferers of mysterious, novel, and/or elusive maladies throughout the nation. The annals of both anecdotal and clinical reports abound with such nonsense, and many authors contend that Lyme patients see, on average, about twelve or fifteen doctors before they finally find one that even bothers to test for it (in my case it was fourteen). Even in the face of what should be fairly conspicuous coincidence these sorts of shenanigans persist: another friend and colleague in Salt Lake City, with whom I’d been conducting fieldwork when my symptoms began, developed a similar suite of symptoms on an identical timeline and was told by half a dozen doctors that “depression can cause all of these symptoms,” even after telling them about me.

I mention these anecdotal tales to set up two lines of criticism. First, with regard to my experience at FMC, there is something not only illogical but frankly and insidiously wretched about lecturing someone about the stupidity of jumping on trends and then stamping that person with the trendiest diagnosis of all. In addition to this being just plain hypocrisy, it also speaks volumes about the current culture of medical practice in the US. It is taboo – indeed, it is practically anathema – for a doctor to say to a patient, “I don’t know.” Someone who walks into a hospital, pays through the nose, and then leaves with a diagnosis of “beats me” can come back with a lawyer. This is why it’s handy to have umbrella diagnoses around for especially troubling cases, but, sadly, use of the words spirit or humors is no longer fashionable, and blaming mysterious ailments on a person’s genetics took on an unpalatable flavor following the rise of eugenics and Nazism. So doctors have a new one: variously called “psychosomatic” or “somatoform” syndromes, and most often assuming the rubber-stamp guise anxiety/depression. This is nothing more than medieval humors for the modern era, a nebulous and all-inclusive diagnosis that is both legally legit and wholly scientifically invalid.

This leads then to my second point: with regard to both my and my colleague’s so-called diagnosis and the pronouncement that “depression can cause all of these symptoms,” a single afternoon’s worth of research belies the validity of that statement. One particularly pernicious fallacy among people who don’t understand statistics, but use them anyway, is that of thinking probabilities can be stacked. If, in other words, there is “a chance” for A and “a chance” for B and “a chance” for C, then there is “a chance” for ABC – period. In reality, the breadth of that chance narrows at each successive step. Think back to middle school arithmetic: the chance of a coin landing on heads is 50%. Add another coin landing on heads, and the chance drops to 25%. Add another, and it drops to 12.5%. There is only a 6% chance of getting four heads in a row, 3% chance of five in a row, and so on – and that’s starting with 50/50 odds. The chances of depression causing chronic headaches that don’t respond to most painkillers is somewhere closer to about 5%. The chances of depression causing overwhelming fatigue, body aches, chills, memory lapses, general cognitive dysfunction, and gastrointestinal distress are about the same, and while the chance of depression causing a detectable fever are even lower I’ll grant it 5% just to keep things even and give doctors the benefit of the doubt. That means the chance of depression causing all of those symptoms is… 0.0000000004%, or somewhere just over one in a trillion. Tack on the helpful addendum “anxiety,” which is characterized by chronic muscular strain and thus has a higher probability of causing physiological ailments, and the overall chance does indeed rise – from a little over one in a trillion to a little over one in a billion. Granted, one in a billion is still “a chance” in many people’s eyes, or else Las Vegas wouldn’t exist, but as a medical diagnosis you might as well be waving a wand at someone.

Which, sadly, is exactly what ends up happening to a lot of us: having been diagnosed as crazy, the only alternative for effective treatment is alternative in the mainstream sense. Thus the “witch doctors and snake oil salesmen” mentioned by that insidious buffoon in Flagstaff. Do a Google search for Lyme+disease+cures and have a look at the results – you’ll see everything from herbal remedies to DVD-based hypnotherapy to peroxide injections to hyperbaric chamber therapy, among rather a lot else. And indeed, some or even most forms of alternative medicine have at least some merit, especially herbal remedies, but the scientist in me looks askance toward a lot of that stuff. There is no regulation on their production or use and very little research to support its efficacy. Which is okay, if you aren’t really sick; feedback machines and at-home hypnotherapy may not work if you’ve got a genuine infection, but they won’t kill you either (although peroxide injections and oxygen-deprivation chambers certainly can). The main problem with these alternative treatments isn’t whether or not they work, it’s the sociocultural ramifications. For every new magic wand that gets sold under the heading Cure Your Lyme Disease there’s another support beam under the mainstream medical opinion that Lyme disease is, at least in many cases, nonsense. If that’s true, then it really is all in people’s heads. Which legitimizes doctors calling Lyme patients crazy. Which causes them to seek alternative treatments. Which creates an economic need for ever more clever magic wands. Which adds another support beam… and so on. This is what’s known among scientists as a reiterative formula or, more commonly, a feedback loop. The problem, by design, can and will only make itself worse.

So how do you break that loop? Of the many effective means I’ve found, one stands out as the simplest: demand proof. If your doctor feels that he or she is also entirely qualified to hand out psychiatric diagnosis, then demand to see a psychiatric degree. If your doctor tells you that anxiety/depression can cause your symptoms, ask what research supports that hypothesis. No lawyer would get away with saying “because I know these things” when giving evidence in a tricky case, and no doctor should be able to either. The appeal to authority is not enough when that authority has demonstrated itself time and time again to be grossly incompetent, easily corruptible, and, increasingly, just plain malicious. Until our government passes a Patient Autonomy Act you pretty much have to create your own autonomy, and it starts with not being afraid to call your doctor the crazy one.