Monday, June 08, 2009

Tick-Borne Illness

A bit of progress has been made in diagnosing my mystery illness since last I posted of it in March. My doc is positively, almost, half-way, sort-of, kind-of certain that I either have Lyme disease or that I am completely bonkers. (Or that I have a central nervous system demyelinating disorder, but I like the other two possibilities better so I am temporarily ignoring this third possibility.)

A Lyme Disease test done locally in April came back negative, but Internet chatter suggests testing by a specialty lab that will not bill to insurance and requires payment in full in advance is superior to Lyme disease tests done by regular old labs. Normally I might dismiss such a thing as quackery, but I'm desperate for an answer to all my symptoms so I convinced by doc to ship my blood off to IgeneX Labs in California for testing. (I was too cheap to spring for the Complete Lyme Panel at $475, so I just got the Western Blot IgG for 100 bucks.) The results came back today -- band 41 was positive and bands 23-25 and 31 were indeterminate, yielding an overall result of indeterminate. So I either have Lyme disease or I don't, I guess.

Meanwhile, last Monday I experienced a brief episode of illiteracy. Yes, I said illiteracy. While working away at the computer I started having trouble seeing, almost like I had developed a bunch of blind spots, plus the screen seemed way too bright. I was trying to decide what the hell that was all about when a new email popped up and I could not for the life of me read it. I mean, I could see the words (more or less) but I had no idea what they said. So I checked another email. Couldn't read that one either. So I grabbed a book and opened it up. Couldn't read it either.

At that point I was totally freaking out so, of course, I did what anyone who is experiencing a potential health crisis should do - freshen up and put on clean underwear. Seriously, it would have been embarrassing to have the little men in white coats come cart me off seeing as how I hadn't exactly attended to my personal hygiene that morning. (I work at home so have the luxury of going directly from bed to desk, without necessarily passing through the shower first. Oh, shut up. You know you're jealous.) So, long story short, by the time I got washed and dressed I was cured. Elapsed time from the start of the eye problems to regaining the ability to read was maybe 30-35 minutes.

And, no, I did not imagine the whole thing, At least I think not.

Anyway, tomorrow I'm getting a brain MRI. Most of me hopes it will come back negative, but a teeny, tiny little bit of me hopes it will show something so as to finally have definitive proof that I am not just making up all my symptoms.

Picture credit: Cartoon by Chato B. Stewart, from

Update, June 9, 2009 - Call me a pain-in-the-ass patient, but I always like to SEE my lab results, not just hear about them from the doc. And, following an early morning trek to the doctor's office, I now have my IgeneX Lyme Western blot IgG results in my fat little fist. Not that it clarifies much. Except perhaps that crazy is looking more likely than Lyme as a diagnosis.

The note reads, " ****Presence of only one double starred band or indeterminate [IND] double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks.**** "

As an aside, this essentially mirrors the result from the local (non-tick-borne-illness-specific) lab, which showed a positive reading at band 41, but nothing else. (Band 41 is apparently indicative of flagella, but not necessarily specific to Borrelia burgdorferi, the bug that causes Lyme disease. In case you remember nothing from high school bio, flagella are little hair-like appendages that allow certain bacteria to swim around your body. Gross.)

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