Struggling With the Politics of Lyme

One of the topics I will deal with is the search for truth. I think there is a human tendency to pick an ideology early in life and stick with it because there is just too much information out there to process. But I see Cognitive dissonance and Dunbar's number as obstacles to be transcended and I think the first step is awareness.

A recent controversial debate has bubbled up concerning Chronic Lyme Disease. What's controversial about Lyme Disease? I'm glad you asked. The Roanoke Times produced a pretty comprehensive piece here. There is also a good documentary titled Under Our Skin.

Here is the nuts and bolts of the debate: due to the Borrelia burgdorferi spirochete, which can hide from blood tests, it is difficult to diagnose patients with Lyme. This creates a problem as, within the medical community (and the age of modernity), there tends to be a belief that if something doesn't have matter, it doesn't exist. The ISDA sets the following injunction for doctors that, if after four weeks of antibiotics for treatment of Lyme, symptoms still persist, then it is simply not Lyme. It would look something like this:

ISDA: "You're symptoms do not exist."

(That was meant to be tongue-in-cheek. I told you there'd be jokes.)

This led to many doctors to conclude that patients (mostly women) were simply depressed or wanting attention. Fortunately for many, there are doctors in small pockets of the country willing to treat long-term Lyme and cure most, if not all, of the symptoms. Now, this flies in the face of the ISDA's statement of non-existent, post-four-weeks Lyme symptoms. So now doctor's who treat long-term Lyme are facing license suspensions and malpractice suits.

After that brief introduction on my search for truth, you might be wondering if it appears I have already taken a side on this debate. The fact is, I have to battle emotion as I have a vested interest in this topic: my wife has chronic Lyme Disease. She went 10 months without a diagnosis (she was treated for bacterial infection, ear infection, fibromyalgia, POTS, and sadly, depression. See, that was a pun! Chalk up another joke!) before testing positive with the Western Blot test for Lyme. She had previously taken two ELISA tests for Lyme with negative results, which just goes to show the difficulty in testing for Lyme. For the past four months she has been treated with antibiotics with no signs of improvement.

Here's where the finger pointing begins. This ISDA (and the majority of the medical community) contend that these doctors are charlatans and long-term antibiotic treatment is harmful. There is certainly some truth to the latter but opponents of long-term antibiotic treatment have yet to address the issue of patients who have found success with said treatment. Since there are cases of patients being treated for chronic Lyme that have gotten seriously ill from the treatment, however, the ISDA has every right to be critical of these doctors that are not following the protocol accepted by the majority of the medical community. If there is no empirical test, how do you know it's Lyme you are treating?

Advocates of long-term treatment point right back and reveal that most of the ISDA board members are in the pockets of insurance companies that don't want to cover the costly long-term treatment of Chronic Lyme.

So here I am stuck in the middle with a wife who is too sick to work and costly health insurance set to only get worse once her COBRA runs out. Do I think she has Lyme? Probably. She does have empirical evidence although the lab tests are still considered controversial. The ISDA could be wrong but I think that has more to do with their demand for hard evidence and their egos (accepting Chronic Lyme would be admitting they were wrong) rather than the influence of insurance companies. All I know is that I have less faith in the health industry than I could ever imagine.

There is a truth in the middle of all this that I may never discover. She may be being treated for the wrong disease. Maybe she'll get better despite the treatment. Maybe she does have Lyme and it will take several years of treatment to recover. All I know is that I will never be fully convinced either way. Now there's a statement that speaks to my curious nature.