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June 28th, 2016

Lyme culture: 1

I enjoyed very good health for a long time, requiring a doctor maybe two or three times a decade. I got to age 65 with good test results, no medications, and walking briskly seven miles a day (down from decades of long-distance running). In early 2015 I developed persistent shoulder and arm discomfort, slight double vision (detected only while updating prescription for new glasses)... and a persistent, hard-to-describe "brain fog" -- not along the lines of early Alzheimers or other dementia, but as if I were jet-lagged all day every day. MRI ruled out the scarier brain possibilities, but blood work did turn up "floridly" positive for Lyme antibodies. Most likely from a tick bite the previous fall -- yeah, we're close to woods full of suburban whitetail deer -- but not certainly, because once infected the antibodies hang around forever. Without providing immunity, dammit, against reinfection from another tick bite.

I took doxycycline for a month, the standard treatment supported by insurance. A neuro-ophthalmologist thought the double vision was most likely a congenital "lazy eye" for which I could finally no longer compensate, and new glasses with prism correction helped a lot. A neurologist diagnosed a pinched nerve in the neck (radiculopathy) as the cause of daily episodes of radiating pain and tingling in one arm; another MRI verified small arthtritic growths on the vertebrae. I saw a physical therapist for exercises to strengthen and stabilize the neck, and the acute episodes stopped, leaving a mild tendonitis around the shoulder.

The brain fog... continued unchanged. Mild, annoying rather than disturbing or disabling, but... unchanged. Imagine that you stayed awake for three days straight, and last night got a solid eight or nine hours of sleep; today you're much better, but you know you're not all the way back. That's how it feels.

As a science and medical writer, then a writer for pharmaceutical launches and symposia, I'd been peripherally aware of Lyme's emergence since the mid-1970s. Cure Unknown, a 2008 book by my former OMNI colleague Pamela Weintraub, had made me aware that some patients' symptoms are devastating, as they were for her and her family. Many patients were misdiagnosed for years:

- because it was a little-known diseaae at first, shading into (equally ill-defined) chronic fatigue syndrome, fibromyalgia, etc...
- because antibody tests were and still are fallible, missing some infections that are later proved in culture
- because the symptoms of Lyme (and sometimes coinfections from the same tick bites) are all over the lot in type, severity and timing
- and because there's no definitive "it's cured!" end point: as noted above, once infected the antibody test results for the classic Lyme spirochete, Borrelia burgdorferi, are the same whether it's still thriving in your blood and tissues or was eliminated years ago. Longer, more aggressive antibiotic treatment does help in some cases, but not all.

Not surprisingly, there's a long-smoldering grudge match between aggrieved patients -- some of whom were told "it's all in your mind" by ill-informed / skeptical / frustrated doctors -- and medical associations, insurers, et al.