There is a lot of information out there about the accuracy (and inaccuracy) of testing for Lyme but the bottom line is that testing for Lyme is not as straight forward as many other tests.
Basics: Tests can look for the antibodies to the bacteria/virus or it can test for the protein of the actual bacteria/virus. There are benefits and drawbacks to both types of testing. If your body doesn’t recognize the invaders as invaders, whether that is because of a severely weakened immune system or the Lyme is hiding within your own cells, there are no antibodies so the antibody tests will show as negative. Makes sense that testing the protein of the bacteria/virus would be a surefire way to get a positive or a negative right? Wrong, unfortunately, the protein that they test for is common among many bacteria/viruses so can show a false positive.
What’s the best test? There is no best, but there is a waterfall approach to testing that can give you the best information available. First the Lyme ELISA and Lyme Western Blot from a normal lab. The tests that are run through the normal labs are testing for the antibodies. If that result is positive, you can stop there and begin looking for treatment options. If that test is negative without any bands, Lyme most likely isn’t the culprit. If you have a couple bands positive but not enough to be CDC positive, then the next step is the Lyme ELISA and Lyme Western Blot through a specialty lab. The specialty labs test for the proteins and, as I said before, are more sensitive. If you have a positive in the specialty lab results then Lyme is most likely the culprit. If you test negative without any bands from the normal labs and choose to do a specialty lab and come back positive, be careful to look at how positive. There is a range of normal detection of the protein as it is known to cross react. If the positive is slightly above the normal range, after all bans negative on the antibodies, I would stop to think if Lyme is truly the right answer.
Second Opinion Program: While I had the Lyme diagnosis, after reading about all of the differing opinions of Lyme testing, I decided I needed another opinion that was based on more than just a symptoms tracker and potentially faulty testing. I found the Columbia University Irving Medical School Center for Lyme and Tick-borne Disease Research Center, Second Opinion Program. It was a blessing to find! I spent two days at Columbia with a variety of testing: blood tests, memory tests, coordination tests, detailed history (all the way to my mother’s pregnancy), etc. Ultimately was presented with an eight page document of my visit and test results. Ultimately, it gave me several directions to look into for treatment not just for Lyme, but possible other contributing factors. I highly recommend this for anyone second guessing the diagnosis or lack of diagnosis. It is not inexpensive, but the time and money you might spend on the wrong treatment path was certainly worth it for me.
Retesting: Keep in mind the tests are also points in time and they can change along the journey. My first test through a normal lab was not CDC positive, it was one band short. After my first round of detox and treatment, my body started recognizing the Lyme as an adversary and then I became CDC positive. While I am one of the lucky ones to have a CDC positive on my record, I know many people test negative through the normal labs and look for more sensitive testing that then comes back positive. I just caution to use your judgement on whether Lyme is the core issue for you. I have seen many people spend time and money on treatment for Lyme without much progress as Lyme wasn’t their core issue to be targeted.
Tick Testing: If you are “lucky” enough to see your tick (or spider) and capture it, you can actually send the specimen to be tested. This will not only tell you if the tick (or spider) was spreading Lyme but also any co-infections so you can deal with everything up front.