I should have also mentioned that the standard blood tests for Lyme are highly unreliable particularly when done through Quest or your local hospital. They use a commercial test kit that is not very well designed. The CDC recommends a two tier testing protocol where one first does a screening test called a Lyme ELISA. The reliability of this test is somewhere close to 30%. Then if you get a positive result the doctor will order the confirming test called a Western Blot. This test is a bit more reliable but still only 50% accurate. If you get a positive ELISA but a negative Western Blot, the establishment doctors will call that positive a false positive and not treat or stop treatment. The truth is that the much greater likelihood was that the Western Blot was a false negative. Most positives are real positives. False negatives occur a lot. There is a lab out in California called Igenex. All they do is tick-borne testing so their tests are better designed and more reliable, not perfect but better. A lot of establishment doctors will call Igenex a bogus lab that will find lyme in wallpaper paste. Not at all true. i've seen a lot of negative results there. Just a better, more reliable lab for Lyme. There is also a lot of confusion regarding interpretation of the Western Blot results whatever the lab used. The test tests for antibodies specific to Lyme. They are identified by various numbered bands. The CDC has a surveillance criteria threshold that states that to be counted as an official case for surveillance statics purposes you need to have 5 of `10 bands positive. This has nothing to do with diagnosis. Having 1 or 2 bands positive is enough to be considered positive for diagnostic purposes. Yet many establishment docs mistakenly think you need 5 positive bands to be diagnosed with Lyme. Thus many, many patients are wrongly told they had a negative test and don't have Lyme with 1 to 4 bands positive. So the bottom line is that the tests are lousy and the doctors often don't interpret the results correctly even when the test is positive. If you have Lyme symptoms but don't get a positive diagnosis, you should seek a second opinion from a Lyme literate doctor. Even the CDC says that Lyme is often determined by clinical diagnosis, taking into account a patient's history of tick exposure and a patient's symptoms. I'm not a doctor but I've dealt with thousands of patients as a patient advocate. I can usually tell after 5-10 minutes of talking to someone about their symptoms, whether they have Lyme and what coinfections they have if any. Yet most doctors are seeing lots of patients with Lyme and missing it. That's why there is so much misdiagnosis. The pediatricians are missing it too. A lot of kids in special ed have Lyme but have been misdiagnosed with all kinds of other things.
Now back to basketball. I promise that's the last of the Lyme tutorial. I just wanted to be sure people know diagnosis isn't as straight forward as just taking a test.
