Thursday, September 3, 2009

Ticked Off: Installment II of my Lyme Disease Journey

The Diagnosis Continues ...

In March 2003, my neurologist was open to anything being wrong with me. The MRI of my cervical spine didn't show any orthopedic problems, so my doctor zeroed in on other things known to have detrimental effects to the nervous system, including lupus, multiple sclerosis, syphilis, diabetes, etc., and Lyme Disease.

This is really, really important. If you ignore anything else I ever write (probably a good idea), you should commit this to memory: If you ever have a Lyme Disease test, insist that your doctor follow it up with a Western Blot test, which is an analytical technique designed to test for specific proteins in blood or tissue samples. This test will find things that the regular Lyme Disease titre will not catch, because the Lyme test has a 50% false negative rate. Think about that -- half of all people who are told they do not have Lyme Disease, really do, so it goes untreated. To put this in perspective, can you imagine a pregnancy test on the market with a 50% false negative rate? No one would stand for it.

You might think that doctors would automatically know to use the Western Blot test, but you'd be mistaken. Unless they are experienced in diagnosing and treating Lyme, most doctors don't know how unreliable the regular titre is. The Western Blot is what confirmed my Lyme diagnosis. Thank God my neurologist did his residency at Yale, near Lyme, Conn., so he was a pro.

When we got the result from the blot, pieces began to fall into place. As I foreshadowed in my first installment , I experienced neurological problems in 2004, after I was plagued with aches and exhaustion starting shortly after I bought my house in 2003. I was in so much pain, I essentially took two months off work to rehab. I was ultimately diagnosed with fibromyalgia when the Lyme Disease and other tests came up negative. This is purely conjecture, but my neurologist and I believe that the 2003-4 event probably was my initial infection with the Lyme bacteria. My doctor at the time did not understand the terrible handicap of the Lyme test; it is especially unreliable if you're newly infected, which I presumably was.

Lyme is a tricky bacteria. If you catch it quickly, a 30-day course of oral doxycycline -- an innocuous antibiotic commonly prescribed for acne and periodontal infection -- can nip it in the bud, and you might get a yeast infection, but be no more worse for the wear. If left to do its thing, however, Lyme takes its time invading your tissues, which is why it can wreak havoc on all of your systems including your neurological system and gastrointestinal tract. Have you ever heard about syphilis making people crazy? It's true that it can, and the bacterial species that carry Lyme are most closely related to the bacteria that carries syphilis. In fact, much of what researchers have learned about Lyme has been gleaned from syphilis research.

The mysterious pain and exhaustion I had experienced for three months apparently was the result of total systemic breakdown due to Lyme Disease that had gone untreated for years.

I have more to say, but no more time or energy to say it. So, good night until next time. I'm about to finish the last book in the Twilight series, and I have a post brewing on that, and I'll certainly have something to say after the finale of season 2 of True Blood. And a rant about manners/bad parenting. Good stuff!

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