October 20, 2004

My Own Personal Great Imitator

This is a special installment - for my daughter, Sara, who asked these questions, along with my responses.

"Can Lyme tests be negative? How is that possible?" Lab tests for Lyme are notoriously incorrect. Lyme has a number of ways to avoid being attacked by the body's immune system - for one example, it has a slime coat on its cell wall which protects it from being identified as a foreign protein and without this recognition by the immune system, the lab test has no antibodies to identify.

"Why didn't you just stop there?" Actually, we did stop there. We accepted this "No Lyme" clinical diagnosis for 2 more years. Most Lyme is misdiagnosed as one or more of over 300 diseases that it can mimic.

"What made you test again?" My doctor decided to test again because I was following a peculiar pattern. He described it as, "You're just so atypical for everything we've tried. And you are so cyclical - you feel ok for a while and you feel lousy for a while and it cycles back and forth. Nothing seemed to make you feel better for long. It just felt it had to be Lyme."

We used a test called the "Western Blot". He cautioned, "You can sometimes get a false result, but let's try." The result came back "very positive." I have since read an evaluation of this test, which said that false positives are extremely rare.

Posted by Laureen on October 20, 2004 1:17 PM