The Lyme community has been saying for years that current “standard” Lyme disease testing leaves too many patients inappropriately undiagnosed. In other words, the tests say you don’t have the infection, when you actually do. And patients suffer because of it.

This is a serious problem, because you are unlikely to receive proper medical care for an illness your doctor doesn’t think you have. You get sicker and sicker–and the spirochete burrows deeper and deeper into your body, making it more difficult to get rid of.

Two-tiered Lyme disease testing

Since 1994, the Infectious Diseases Society of America (IDSA) and the Centers for Disease Control and Prevention (CDC) have promulgated the notion that their “two-tiered” system of Lyme disease testing is a good way to determine who has the illness and who doesn’t.

The two-tiered system means you have to pass the first test–usually the ELISA–before they’ll even think of giving you the second one, a western blot. According to the IDSA and CDC, you have to test positive on both in order to be diagnosed with Lyme.

The problem is, the ELISA is a lousy test. For lots of reasons, a person who actually has Lyme disease can show negative on the ELISA. But that initial negative result too often means the end of the line for any chance of a Lyme diagnosis.

Delayed diagnosis—often a direct result of the two-tiered protocol—prevents huge numbers of people with Lyme disease from getting the care they need.

No more tiers?

In an article just published in the IDSA journal Clinical Infectious Diseases, prominent scientists now concede, “The 1994 serodiagnostic testing guidelines predate a full understanding of key B. burgdorferi antigens and have a number of shortcomings.” (emphasis mine)

And later in the article, the authors state that the current Lyme testing guidelines “are amenable to improvement in light of new data and technologies. Continued reliance on serologic testing for early Lyme disease is suboptimal.” (emphasis mine)

I’d like to point out that this laudatory admission came about because of a conference held on the topic at Cold Spring Harbor Laboratory Banbury Center. The scientists who signed this article were brought together at a meeting sponsored by the Global Lyme Alliance. Good work, GLA!

To learn more about two-tiered system and its flaws, as well as to find out about promising new Lyme diagnostic testing, I suggest you read the following blog by my colleague Lonnie Marcum:

LYMESCI: Paving the way for better Lyme diagnostic tests.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.