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Dismissing doctors: How do you find a doctor who can help?
Bones, Joints & Muscles | Last Active: May 24, 2022 | Replies (102)Comment receiving replies
Lab testing for Lyme disease may be indicated if you don't have the tell-tale rash or a known tick bite. The lab tests are not perfect and two-step testing with both available tests are recommended: ELISA followed by the Western blot test. I've included excerpts from both the CDC and Mayo on Lyme disease diagnosis.
From the CDC: https://www.cdc.gov/lyme/diagnosistesting/index.html
"CDC currently recommends a two-step testing process for Lyme disease. Both steps are required and can be done using the same blood sample. If this first step is negative, no further testing is recommended. If the first step is positive or indeterminate (sometimes called “equivocal”), the second step should be performed. The overall result is positive only when the first test is positive (or equivocal) and the second test is positive (or for some tests equivocal)."
From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/lyme-disease/diagnosis-treatment/drc-20374655
"Many signs and symptoms of Lyme disease are often found in other conditions, so diagnosis can be difficult. What's more, ticks that transmit Lyme disease can also spread other diseases.
Lab tests to identify antibodies to the bacteria can help confirm or rule out the diagnosis. These tests are most reliable a few weeks after an infection, after your body has had time to develop antibodies. They include:
- Enzyme-linked immunosorbent assay (ELISA) test. The test used most often to detect Lyme disease, ELISA detects antibodies to B. burgdorferi. But because it can sometimes provide false-positive results, it's not used as the sole basis for diagnosis.
This test might not be positive during the early stage of Lyme disease, but the rash is distinctive enough to make the diagnosis without further testing in people who live in areas infested with ticks that transmit Lyme disease.
- Western blot test. If the ELISA test is positive, this test is usually done to confirm the diagnosis. In this two-step approach, the Western blot detects antibodies to several proteins of B. burgdorferi.
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"Lyme literate doctors" suggest only the Western Blot. This is controversial. The Elisa may have a high false negative rate, and can be thrown off by autoimmune factors too. Then again, there may be a false positive problem with testing https://bcmj.org/bccdc/diagnostic-testing-lyme-disease-beware-false-positives
The Western Blot interpretation is also controversial but it is better than the Elisa and most docs will agree to do that first. The CDC interprets the Western Blot according to the number of "bands" and Lyme literate MD's (and others, generally functional and integrative docs) look at the bands that are specific to Lyme. In other words, if band 23, which is specific to Lyme, is the only band, some docs will say it is negative and some will say it is positive. Band 41 is often present and can be from Lyme but is not specific to that particular spirochetes but can be from other spirochetes.
Here is info on tests: https://www.lymedisease.org/lyme-disease-test/ There is also a timing issue because if tested too early, there are no antibodies in the blood yet.
Unfortunately I have experience with testing. I tested negative. Then a doc put me on antibiotics anyway. Soon I was fully "CDC" positive. I was told that the meds "brought the antibodies out" but maybe it was just timing. I cannot explain this but only to say things with Lyme are not as neat as some will try to say.
Have any of you heard of the "Lyme wars"?!