The Epidemic of Misdiagnosis

Lymies fight many battles. We fight the ignorant doctors who deny our disease, the insurance companies who refuse to cover our medical costs, and friends and family who don't want to hear our cries. This is not a new theme on my blog. As I've explored in the past, we fight our battles hard.

The process from start (accepting the possibility of Lyme and seeking proper diagnosis) to finish (the ever-elusive rainbow of a "cure" we chase) is tedious.

Finding a doctor to provide a proper diagnosis is a common early obstacle. After all, Lyme-literate doctors (known as LLMDs) are far fewer in numbers than regular doctors who claim to know how to properly test for Lyme, and actually don't.

If I could provide one critical piece of advice to any reader who suspects chronic (non-acute) Lyme, it would be this: Don't let a general doctor run your Lyme test. Heck, don't let your internist, immunologist, infectious disease doctor, OBGYN, allergist, endocrinologist, neurologist or anyone except for an LLMD run your Lyme test.

As if it isn't bad enough that many outright refuse to test you based on [their ignorance of] your symptoms or [the lack of ticks in] your geographic area, if you're lucky enough to find a doctor to humor you enough to agree to test you, they will probably either run the antiquated, highly inaccurate ELISA blood test, or misread the results of the multi-layered, complex western blot test to be negative when it's actually positive.

Bottomline: Most doctors don't know how to properly diagnose someone with Lyme. They arrogantly claim they know what they're doing, but they don't.

What's the point in taking a test if there's nobody to properly interpret the results? Would you take a lie-detector test that's being interpreted by an unprofessional, untrained lie detector administrator? (OK, don't trust lie detector tests anyway, but that's completely off topic......)

I've heard from many people over the last year that they've received false negative results from Lyme-illiterate doctors contradicting their Lyme diagnosis, but it wasn't until very recently that a deeply personal assault forced me to look straight into the barrel of the gun of this controversy.

Someone very special to me recently jumped on the Lyme bandwagon after experiencing a typical "Lyme flare", comprising symptoms of anxiety attacks, insomnia, mental fog, weak muscles, stomach pain, cardiac arrhythmia, spinal pain so severe it became difficult to walk, lack of appetite, memory loss, and more. This person, who I'll call Sam, received three types of Lyme testing over the last couple of months: kinesiology, otherwise known as muscle testing. the ELISA blood test, and the western blot blood test.

Two of those tests came back positive. The ELISA, not surprisingly, was the negative one. The muscle test returned the strongest of three levels of Lyme diagnosis, assuring that, in spite of the "alternative" nature of this test, there was no doubt in the strong, flaring state of Lyme—following to the test's methodology.

Each of the three tests was performed by a different doctor. Unfortunately, Sam did not heed my advice to trust only an LLMD, so the two blood tests were performed by non-LLMDs (making the most alternative test of all, the muscle test, the only one performed by an LLMD).

The two non-literate MDs who performed the blood tests, an internist and a neurologist, claimed the tests were negative. Yet, knowing how hard it is to actually interpret a western blot test, I had to see the test result for myself. Lo and behold, the western blot showed five positive bands, making it a positive diagnosis. Sadly, the neurologist who diagnosed Sam was not well-versed on interpreting the results.

Why would she be? Doctors aren't trained to be Lyme literate in medical school. (And thanks to these doctors, as we speak, thousands—tens of thousands, even—who mistakenly believe they don't have chronic Lyme, actually do).

This is where the staring-straight-into-the-barrel-of-a-gun part of the story kicks in. I knew that Sam, whose relationship and well-being I value immensely, was positive for Lyme. If a clinical/symptomatic diagnosis wasn't enough, two tests for Lyme were positive! For my sake and for Sam's, it became a personal mission to get the truth acknowledged as such.

But it was my word against the neurologist's. Further complicating the issue were mutual friends of mine and Sam's, a married couple who I'll call Bob and Janet. It was Janet—a longtime friend—who referred Sam to see her neurologist (the one who initially misinterpreted the results of the western blot).

Unfortunately, Janet worships her neurologist, crediting her for curing Janet of her own poor health. So neither Janet, her husband Bob, or Sam will acknowledge Sam's positive Lyme diagnosis. It's lonely here in my corner.

This comes even after Janet watched the Lyme documentary Under Our Skin. While I had hoped the movie might change Janet's perception of chronic Lyme, I was disillusioned at her only insight into the film being that it "scared" her, and further disappointed that her husband Bob refused to watch it after he witnessed his wife's unpleasant reaction to it.

Maybe, in a sense, the movie is scary, since it exposes the devastation that chronic Lyme can actually cause a person. While it's Bob's choice to watch or not watch the movie, for him to deny himself that education and still insist—with the stench of cavalier abrasiveness—"Sam does NOT have Lyme. He just doesn't. Drop it," was hypocritical to say the least.

That's a quote from the last time I saw all three of them together. We ended up in the  rather unpleasant argument over the existence of Sam's Lyme disease at the dinner table. Frustrated and embarrassed to find myself fuming, I wiped away tears while firmly maintaining my stance. As Janet tried to console my unconsolable self with her loving, gentle tactics, it struck me that my grief and anger was not solely the result of this disagreement.

Yes, I grieved over knowing that for the rest of our lives, they would never believe me over the neurologist. And indeed my ego was bruised at their perception of me as the emotionally unstable, misinformed one, which might carry on indefinitely through future rites of passage—all of which I expect them to be a part of. But, on another level, I mourned for the thousands of us who have stood in my shoes and been told we're wrong or stupid, and our gut-wrenching feeling of powerlessness.