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Lyme bands - Western Blot - which ones matter
Hopeny posted a topic in PANS / PANDAS (Lyme included)I am not a doctor and am summarizing information that is publicly available. I am not intending to provide medical advice. Lyme testing is complex and there seems to be a lot of misinformation out there so I hope this is helpful: Many are probably aware that the Western Blot is an imperfect test, and can be used to correlate Lyme along with clinical symptoms by an LLMD but should not be used as a stand alone to rule in or out Lyme. The severely outdated CDC surveillance guidelines include bands that cross react with other bacteria, and exclude bands that are specific to Lyme. Pamela Weintraub does a very good review of the history of the Western Blot in her book Cure Unknown, I have no connection to the author, I just found the book extremely helpful in understanding the testing. The folks that developed the surveillance criteria had conflicts of interest in regards to patents, subsidies and Lyme vaccines, and unfortunately our children pay the price of this with thousands of missed diagnoses, my DD included. The majority of pediatricians, infectious disease specialists, rheumatologists and even PANDAS doctors are not aware of the issues related to the WB and use the CDC guidelines which are inadequate. if Lyme is suspected, in my own opinion an LLMD is necessary to evaluate the test and symptoms. I wish I had known this when my daughter first showed symptoms and we were told her test was "negative". LLMD's generally consider 18, 23, 30, 31, 34, 37, 39, 83 and 93 specific for Lyme. 31 takes 1-2 years to even show up and indicates chronic Lyme. 83 and 93 are the DNA of the spirochete. if the listed bands are IGG or IGM, and are + or IND, they can correlate a clinical diagnosis of Lyme. It doesn't matter how many of these, or if they are IGG or IGM, or + or IND, they just look for these bands. According to a well known LLMD, there are no false positives with any of these bands present. The presence of bands fluctuates, it is postulated due to the mutation of the spirochetes into the 3 forms, so you will see different results at different points in time. In my DD's case I am not bothering to re-run any of the tests which were both CDC and LLMD positive in our case, we are just going by symptoms. Standard labs do not report 7 of the 9 IGM relevant bands and 3 of the relevant IGG bands. Standard labs do report bands 28, 41, 45, 58 and 66 which cross react with other bacteria and are not considered relevant to a Lyme diagnosis. So there is a problem with under reporting important bands and over reporting irrelevant bands. Standard labs also only look for some of the Bb species so will miss potential infection. Two labs that are generally relied on are Igenex and SUNY Stony brook, Igenex reports all relevant Lyme Bands and Stony Brook will report all bands but it MUST be requested on the order, it is easy to miss requesting this on the order. Stony Brook only tests for Bb and does not test for co-infections. Labs that are also used for co-infections but not Bb are Sonomoa county for Babesia and Galaxy Labs for Bartonella. Advanced Labs is offering a new type of test that seems very promising which actually looks for Spirochetes in the blood.