Lyme testing

There is a high rate of false negatives with the Lyme and co testing.

But when you get a positive - Its positive.

For Lyme get the WB IgM and IgG for $210 total.
Test # 188 and 189 on test sheet. It's a blood test.

I was positive on the WB IgM through Igenex.

Agree with the others.

There are MANY reasons the tests are so inaccurate but most stem from the fact that the tests really were not intended for diagnosis - they were developed as part of the DC's Surveillance data criteria, which is intended to track disease trends - only. Unfortunately, for a lot of political reasons, they've not developed better tests.

So, for entomological purposes the CDC's surveillance criteria includes two components that contribute to the inaccuracies:

The CDC tells MDs to use a two-tiered process of testing people. The first test is and ELISA that is supposed to be highly sensitive but not very specific --- it generally only tells you if your immune system is fighting something. MDs are then told to follow up with a more Lyme-specific Western Blot but ONLY if the ELISA is positive. The problem with that is these are serology tests, which are effective only if your immune system is producing enough antibodies for the tests to detect. Over 200 studies have proven that the Lyme microbe has the ability to disable and evade your immune system. So this sets up people for mostly false negative test results.

The other problem with the surveillance testing process is the criteria used in the for interpretation of the test results are geared toward a very specific manifestation of the Lyme microbe, not to broadly capture all of the Lyme cases. Most people who are infected won't qualify based on these very strict criteria.

Also contributing to test inaccuracies, the CDC developed a specific list of bands that are required in order for the tests to qualify as "positive" according to the "case definition" necessary to fulfill their "surveillance" requirements. And most MDs don't know how to interpret the tests correctly and simply rely on the "CDC-positive" or "CDC-negative" results that are again, geared toward tracking that one manifestation of the microbe.

Because of the surveillance purposes of the tests, the CDC CLEARLY states on their website that the tests and the band criteria should NOT be utilized for diagnostic purposes and that Lyme should be clinically diagnosed. But this statement is buried on the website - you might have to point it out to your MD.

It states that:

"Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement."
www.cdc.gov/lyme/stats/survfaq.html

All of this confusion is difficult for MDs because the CDC and the Infectious Diseases Society of America rely on outdated science that defines Lyme much more narrowly than is needed for simple diagnosis, since everything is geared for the surveillance process... the system is VERY slow to change and that's also where the politics come into the picture.

And most MDs have no idea that Lyme is supposed to be a clinical diagnosis or how to actually do that so they just rely on the tests, tell patients they're negative, and move on. It's borderline criminal.

And that's why patients generally find Lyme specialists who are better educated to clinically diagnose Lyme and the other coinfections common with Lyme.

-p