Originally Posted by sagethyme
Why would I need a retest? Can't I find a doctor whou would accept these results as a positive? I assume that LLMD is a specialist in Lyme. Why would a Dr need the lab to declare a posiitve why can't an educated Dr make the diagnosis? Do you know if having 2 bands positive means that I was bitten by the tick? I am trying hard to maintain an open mind and understand while my joints are in so much pain.
It's certainly possible a LLMD might accept these results and not retest; they are supposed to be willing to diagnose purely on a clinical diagnosis since the testing is not terribly accurate and controversial to boot. Though many want to use Igenex to get a confirmatory result, not all do I imagine.
2 bands means that likely yes, you are infected. Band 41 is general to all sub-species of the Lyme spirochete, band 58 is maybe Lyme-related. Sorry, I mis-read and thought you had 3 bands not 2. Better to find a LLMD and be on the safe side.
The lab is using the old Center for Disease Control definition of a "positive result"; that being 5 reactive band are needed for a "positive". But they also said that those criteria were for their internal tracking of Lyme's cases and not to be used for diagnosis. But lazy labs and docs still use them to this day.
Igenex considers 2 bands to be positive I believe. They take a lot of heat for "too many false positives" where false positives are alot rarer than false negatives. But they are testing people who failed the much more conservative CDC-type testing, but are sick in some way, so I don't think that criticism holds much water.
CDC even admitted that using their criteria for diagnosis probably excluded 90% of people who had Lyme's. I got lucky and had a CDC-positive, but many people don't. CDC assumed that everyone has the same strong immune reaction to Lyme's, when Lymes actually kills and suppresses the very sub-type of white blood cell that can kill it. This is why a test called the CD-57 is sometimes used to judge immune function while Lyme infected. If your immune system has been beaten down, you may not get a strong reaction, and therefore you don't get the 5 bands...
Sometimes after people have been on treatment for a time, a re-test shows more bands; don't ask me why, but it happens.
As for using a neurologist to diagnose/treat Lyme's, it's probably a waste of time. Certainly using someone like an infectious disease doc is, as they generally cling to old outdated definitions of Lymes, and aren't well informed about it.
I'd suggest finding a LLMD in your area and have him check you out. Would you like a site where you can get a referral?