Lyme is a 4-Letter Word

I had in interesting encounter last night. I was at a friend's house for a BBQ.  Her father was visiting from out of town. He's a doctor from New York. A hematologist.

In a rambling discussion of topics ranging from family backgrounds to the study of languages, I mentioned being at NYU and having a professor who spoke English with such a heavy Chinese accent that I couldn't understand a word he said. My friend's father had gone to NYU. He got both his undergrad degree and his medical degree there. He lives and practices north of New York City now, so I asked him if he still had connections to the NYU Medical Center.

I told him that I had been to a neurologist connected to NYU last year. This piqued his curiosity and we talked about the tests I'd had done there. I explained that I'd had nerve biopsies that confirmed abnormal morphology and nerve conduction exams that confirmed conduction issues. I told him that two neurologist had determined based on these tests that I have Chronic Inflammatory Demyelinating Polyneuropathy and Dysautonomia.

He started questioning: "Well, was there an MRI?", "Was the nerve biopsy definitive?", "Were there any other tests to confirm this? "What kind of tests have you had?" He was skeptical of the diagnoses. A hematologist is questioning the neurological diagnoses of two neurologists.

What struck me right off the bat, was how little he knew of me and my history and how willing he was to jab at the work of other doctors. I was not seeking his medical advice. I was relating a positive encounter with an NYU doctor.

When I explained to him that I had been displaying neurological symptoms to doctors since 2005 and that these tests were definitive and the only other tests I'd ever had that came up with definitive positives were Lyme tests, he stiffened right up and said, "So, you had Lyme once, doesn't mean its active."

Wow. I hadn't said that it was. In fact, I was explaining that since there seems to be no consensus on what all the Lyme tests mean, we were actively pursuing other explanations for my symptoms. I did inform him that I'd had a recent test that supposedly did confirm active infection, but that I wasn't left with any sense of confidence about that, either, given so much conflicting documentation.

His retort - and I say retort, because at this point, he clearly seemed to have stepped into conflict mode, when we had been simply discussing my experience with a doctor from NYU as a matter of people making connections - "There is no controversy about Lyme tests, the IDSA is just having to stand up to a lot of quacks."

Conversation over. He barely spoke to me the rest of the evening, after having been energetically engaged up to that point.

Lyme is a four-letter word. Those of us who have had to live with Lyme, know it as a kind of curse, certainly. Apparently, the mere utterance of the word is a curse, an offense. It certainly has power.

I was not trying to discuss Lyme. Nor was I at all interested in going through the history of my medical journey, since it doesn't reflect well on the profession and I had no need to cast any shadow on this man I did not know. In fact, I was relating one of my better experiences of a doctor as a way of praising NYU. Further, I was purposefully highlighting the concept that my neurological symptoms could be explained with diagnoses other than Lyme. I even avoided mentioning that the docs think having Lyme generated these disorders. Still, in response to his questioning about whether I'd ever had any definitive tests, I mentioned Lyme, just mentioned it and the conversation derailed. His entire demeanor changed.

Here we can see how progress on this topic is impossible. By generically labeling those who oppose the IDSA stance as quacks, he has summarily dismissed any consideration of their viewpoints. It doesn't matter that the IDSA admits that their guidelines are based on opinions, not evidence. It doesn't matter that there is a growing body of research which contradicts the IDSA opinions. If a proof-positive piece of research came from someone who contradicts the IDSA, it would not be given a chance at daylight, because they are "quacks".

This is how you stifle dissent. You make it clear that you are willing to be personally offensive to anyone who disagrees, rather than simply hearing someone out and pointing out any flaws in their ideas. In short, you are a bully.  I certainly wasn't going to provoke a debate about this as a guest at someone else's house. I'm not well-enough equipped to have the debate with an entrenched doctor, anyway.

While someone with this style may think he has won something, what he lost was my respect. Additionally, he left the scent of fear. The establishment is feeling threatened. That may be a good thing. As long as, the threat is out of a search for truth and not based in fear, itself.

I'll write about the fears that surround Lyme tomorrow.