Wednesday, September 28, 2005


Yesterday I saw a doctor who might be able to treat me for Lyme disease. Here's a email I sent to my local neurologist:

As you requested, I called IgeneX and asked to speak to doctor you spoke to, about course of treatment for Lyme and for a list of "Lyme literate" doctors. The office staff responded with a list of three doctors, one out of the area, and one whose office has not responded to my voicemail, and one I saw today.

He has in the past treated people with Lyme, though I am not certain that those patients had CNS manifestation. I have a copy of his assessment from the initial meeting, which seems to summarize to:

1. Have the neurologist obtain spinal fluid and send it to IgeneX for analysis.
2. Possibly treat with up to 28 days of IV antibiotic, every eight hours.

I'll provide you with a copy.

His approach strikes me as overly conservative. I don't want another invasive spinal tap and the potential agony and emergency room visit that attends it. It is a risk to my health.

While treatment with antibiotic is not trivial, the possibility that my symptoms are due to Lyme should be acted on; Even if we imagine unusual circumstances wherein a CSF sample could not be obtained, treatment would be warranted, and indeed the only ethical course.

From your Sept. 21 email:

"Regarding treatment ... I'm not an infectious disease specialist. I can give you a prescription for Flagyl and look up the conventional recommendations. But I don't have the expertise or time to plunge into a maelstrom of controversy (as much over treatment of Lyme as diagnosis)."

I request that you look up the conventional recommendations, and give me a prescription for Flagyl, if indicated.

I appreciate your skill and approach as a doctor, and our sometimes informal relationship, which I feel makes for more effective communication.

But this is (or appears to be) a matter of life and death for me. I could die of this. I'm not an infectious disease specialist either, but I do find myself compelled to stretch myself to deal with this surprising condition. I request that you do, too. After all, you could save my life, which I value, and which my wife and children benefit from.

I wish I had the chance you have, to treat a guy who appears to have ALS but who might just have Lyme, with the possibility of stopping his disintegration, or even healing him. Perhaps I have ALS alone, and the Lyme is complete red herring. Still, it's worth pursuing with vigor, and I ask you to show that vigor.

Thank you

Left grip is 30 pounds (25, 26, 30), right grip is 80 pounds (75, 80, 75), left leg balance is 4.94 seconds, and inhale volume is 4450 mL.
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