Each season has its own medical threats or so they tell us, so by rights I should be warning you about the flu – but I’ve already done that. Or I could warn you about carnivorous Christmas trees (sorry, old joke c/o the late Chuck Davis who mocked a pamphlet referring to “deciduous and carnivorous* trees”) but I promised you Lyme Disease and Lyme Disease it shall be. As it happens, to my way of thinking, Lyme and flu may well share an immunologic link: as with the flu, where the virus is spoken of as though it’s a rampaging army, similarly, with Lyme Disease it is that original tick bite that has gained iconic status. Differences (biological, physiological, genetic) between people ironed out in the search for easy answers and someone to blame.
Lyme Disease, for anyone raised by wolves who’s missed the thousands of news items over the last 40 years, is a tick-borne disease that tends to cluster in areas such as New England where there are deer, believed to be the vector. Named after the county in Connecticut where it is said to have originated, Lyme has garnered increasing attention as some patients seem to develop vague but debilitating symptoms usually years after the original infection; symptoms that experts tend to dismiss as psychosomatic and unrelated to Lyme (even as conspiracy theorists maintain these medical denials are a plot and There Be Skullduggery afoot). Maybe aliens are involved, who knows.
(I use the term “disease” here , by the bye, with some disquiet; there seems to be much overlap in descriptions and discussions of Lyme between disease and illness – illness usually being defined as the patient’s experience versus the more objective signs and symptoms which are classified as a disease.)
It all begins with a bull’s eye – usually, maybe, sometimes
Ticks, said, Aristotle, clearly not a fan, are “disgusting and parasitic”. Ugly too. These tiny thumbtack creatures survive by boring into a host organism such as mouse, deer or human and – a la Twilight – sucking its blood. They’re vampires in other words. Once the tick has sunk its, er, fangs some patients develop a rash resembling a target or bull’s eye and a bacterial infection that may or may not have symptoms. This, it is said, results from the tick passing on a rare type of bacterium called a spirochete. Known as Borrelia burgdorferi (after Willy Burgdorfer, who painstakingly identified spirochete in a tick the early 1980’s) a spirochete looks a bit like a coiled telephone cord, hence its name. I will not bore you with the intricacies of the different types of tick, the link to another disease, babesiosis, a malaria like illness also found in New England, though I could. Believe it or not parasitology is actually quite fascinating.
The problem, at least from a purely scientific perspective, is that the spirochete hypothesis came after the realization that, in most cases, Lyme Disease responded quickly and well to antibiotics. This led researchers to work backwards to find the culprit bacterium. In other words, as physician Robert Aronowitz in Making Sense of Illness (Cambridge University Press, 1998) writes, “To say that the discovery of the Lyme spirochete led to rational treatment is to put the cart before the horse [and] owes more the idealization of the relationship between basic science and therapeutics than to the actual chronology of investigation.” It is, Aronowitz suggests, more like a Texas bull’s-eye: you shoot the gun then draw the bull’s eye around the bullet hole.
This is especially problematic since early antibiotic treatment means that any trace of bacteria are usually wiped out and their existence is more in the abstract than anything else.
If you’re a disease, at least be new, modern and famous
Nevertheless, the narrative that’s evolved around Lyme Disease is as follows, this quote from that recent New Yorker article that sparked my curmudgeonly instincts: “Lyme Disease was all but unknown until 1977 when Allern Steere, a Yale rheumatologist produced the first definitive account of the infection.” Just one problem. It ain’t necessarily so.
If we want to nitpick (and you know I do), a disease called ECM (erythema chronicum migrans) which is uncannily similar to Lyme Disease appears in European medical texts as far back as the late 19th century. Also characterized by a bull’s-eye rash (called erythema migrans wouldn’t you know) – ECM, in some people, also appeared to result in flu-like symptoms. It was never definitely demonstrated whether it was a tick (which are also common in northern Europe) or a virus, and since the majority of cases were mild and self limiting, nobody paid that much attention.
Plus, ECM was described by a lowly branch of medicine, dermatology (think, Lars, Phyllis’s husband on the Mary Tyler Moore Show if you can remember that far back). Lyme Disease though, was identified through the exalted ranks of a specialty with more nous, rheumatology and then championed by a group of angry, well-off mothers in New England who were furious that their children seemed to be coming down with some kind of disease nobody knew much about; a disease, moreover, that seemed to mimic rheumatoid arthritis. Since the focus was children, the media immediately jumped on board (and the ringleader-mother, Polly Murray, appears to have been adept at channeling their interest). There may have been joint pain in the European ECM patients but the patients were all adults, in whom joint pain may well have been considered more or less normal.
But in New England, well, there you had a veritable PR maelstrom: children being bitten by these vampiric insects; distraught mothers and heroic scientists swooping in to figure out what this strange, dire new disease could be.
Why does this matter? It matters because new things, new diseases are always more terrifying than old, known ones. Just as we all relax when we find out the potentially lethal symptoms keeping us up at night are actually shared by three quarters of the people in our office and is just what’s “going around”. But a new disease? Affecting children? With bizarre symptoms? That’s scary. And whenever there are descriptions of disease, incidence of that disease increase.
In the case of Lyme Disease, that interest hasn’t waned, with the end point always the same: a plea for more good science (not that bad kind of science people usually like to do).
Guidelines uber alles
The American Infectious Diseases Society guidelines maintain that Lyme Disease is usually easy to treat and cure. A few weeks of antibiotics does the trick in most cases and relapses are rare. Patients, advocates, as well as some rather strange conspiracy sorts, disagree and here’s where we run into one of my pet peeves, that objective/subjective, disease/illness demarcation that shouldn’t be a problem but all too often is.
Patients and their families and friends, at least in the fairly small number of Lyme sufferers who develop lingering and mysterious symptoms (ranging unpleasant but benign ones like headache and insomnia to weird and wonderful: “joints on fire”, “brain wrapped in a dense fog”), feel that the medical community has deserted them and is ignoring their very real pain, the very real fact that their lives have been horribly affected. As with chronic pain and other conditions that simply defy our reductionist explanations, the rhetoric descends into and either/or proposition. Either the disease exists as explained by the guidelines, or it does not. Either the tick bite leads to dreadful long-term symptoms in everyone – or it does not. Nothing in between.
Which is clearly nonsense.
Terms like “idiopathic” (of unknown origin) or “post” (post-viral, post traumatic) have been coined to describe these symptoms, these patients, mostly because we simply don’t know what to do with them. And by “we” I mean everyone. Society. The culture at large. (I wrote about our issues around chronic pain in an earlier post.)
The biomedical model simply cannot explain the complexities of human experience, human disease, illness. Not only are there vast differences between individuals in their physical and physiological selves, there are social and cultural and dietary and a myriad others. It is simply not feasible to “fix” every underlying “cause” to get rid of a “disease”. Even infectious disease that we know is caused by a virus or bacterium does not affect everyone. Necessary but not sufficient is the phrase. The TB (or any other) bacterium is necessary for TB but not sufficient. Other factors must be present.
So why is it so difficult to believe that in some people that tick bite, with or without the bull’s eye rash, might lead to long term problems; problems amplified by the individual who also believes there is a problem that needs fixing and whose stress levels rise as a result. After all, if they feel so lousy it must be something terrible – cancer, maybe.
We believe in the magic of medicine so when it fails us we are hurt, angry, disappointed. This explains why Lyme (or chronic fatigue etc.) activists so often sound like such loony tunes. Even as they decry the evils of the medical establishment they search for legitimacy from it, absolution, that what they are feeling is “real”. (Which will also translate into other institutions recognizing said condition which then has other consequences like disability.) True, there is the odd hypochondriac, Munchhausen’s, factitious patient. But there are also people who suffer from pains and disabilities that medicine cannot explain – and abandons, using the term “psychosomatic” like a cudgel. So what if it’s psychosomatic? All psychosomatic means is that the illness or symptoms originate from the mind, not the body (at least insofar as we can tell – our imaging and tests and so on not being exactly infallible). Who cares where the problem originates when people need help? Isn’t medicine about exactly that, doing no harm, helping people feel better, function better? It seems logical that some people have the type of immune system that reacts, over time, to some kind of toxic insult, tick related or otherwise. These are the folks who develop rheumatic and other symptoms over time, the ones that medicine refuses to countenance.
What I do not understand is why. Why does not having a diagnosis, a label, mean you have to deny people even have a problem? (Some Hon. Members: Shame, Shame.)
* they meant coniferous