My Arlington practice hosted its second Lyme clinic of the summer last Friday, with a steady hum of new patients who’ve been treated for Lyme but aren’t better, or who’ve been told they don’t have Lyme but think they might have it, or who feel the classic symptoms but never had a rash. With all that’s been written and discussed about Lyme Disease, confusion persists aurrounding its symptoms,. diagnosis, and treatment. Here are some of the reasons why:

The symptoms: First, it’s important to remember that what’s often referred to as the “bulls-eye” Lyme Disease rash (called Erythema Migrans rash or EMR) is present in less than half of Lyme cases. And yet, many patients and most doctors don’t even consider Lyme unless there’s a clear history of tick bite and rash. Add to that picture the thousands of patients who had the rash but never saw it, or who saw the rash but didn’t recognize it as EMR, and it’s even clearer why so many people don’t get better. Here’s the bottom line when it comes to symptoms: first, almost all of us live in an area populated by deer ticks (this pertains to most of the US and surprisingly large areas of the world), so almost all of us are at risk. If you suffer from

• unusual and unexplained fatigue
• unusual and unexplained aches and pains
• neurological symptoms including headaches, visual problems, ear ringing, numbness/tingling, and “electric” sensations throughout the body

then you should ask your physician to consider testing for Lyme Disease. Unfortunately that’s when things often get more complicated.

The Diagnosis: I can’t tell you how many patients have said to me “My doctor tested me and I was negative.” Testing for the Lyme bug (called a spirochete) is very difficult, because of the nature of the spirochete and how well it hides. But many doctors rely on insufficient testing. Most use the ELISA, which is not nearly sensitive enough, and often produces a false negative; and many don’t work hard enough to make sense of that elusive Lyme spirochete.

First, the spirochete: it lives in a cell, and has a life cycle of 3-6 weeks. Every month or so, it peeks out of the cell, and the immune system forms a reaction to it. Keep that in mind as we talk about testing.

The only reliable way to test for Lyme is by properly testing the blood for evidence of an immune reaction: if there’s a reaction, we know that Lyme has been there. It’s like when the detective in an old crime novel  finds a cigarette butt in the ashtray: he knows the bad guy has been around. And if the cigarette butt is still warm, he’d better check the closets and under the bed. The Lyme tests that I use are 2 Western Blot tests called an IgG (immunoglobin G) and an IgM (immunoglobin M). The IgG shows whether there’s been an immune reaction to Lyme (cigarette butt in the ashtray); the IgM can pinpoint that exposure to 6-8 weeks (the still-glowing cigarette butt).

In testing, any immuno-reaction is given a number called a band. Some bands are very specific to Lyme, while others can be positive from reactions to a number of organisms. If enough Lyme-sensitive bands are positive, they highly suggest a Lyme scenario, just like jigsaw pieces gather to suggest an image.

So why so many false negatives? For one thing, many physicians stop hunting after a negative ELISA. Also, the labs who commonly test for Lyme do not use a particularly sensitive Western Blot test, and – here’s what really baffles me -many Western Blot assays do not include the 31 and 34 bands, even though these are most sensitive to Lyme. Without those bands, the assays are read as negative.

And another big problem: many physicians ignore a positive IgM result. This makes no sense, as a positive IgM is considered ample evidence in most other infectious disease diagnosis. Yet I can’t tell you how many positive IgMs are ignored, even if the right bands are tested. In many cases, the lab tests are done in the winter months, when a physician can’t explain why a recent immune test would be positive without live ticks around. But there’s an easy explanation for a positive IgM test in the winter, and it relates to what I said earlier about life cycles. Every time that spirochete peeks out of the cell, it’s like a re-infection. For that reason, I consider a wintertime IgM to be a diagnostic indicator of Lyme in someone’s system.

TOMORROW – how I treat Lyme Disease