kam2017 Posted July 3, 2017 Report Share Posted July 3, 2017 My 5 year old son's( with PANDAS/Mycoplasma) Dr. ordered Lyme testing through Medical Diagnostics Lab. I am finding the results of the test difficult to interpret. The Dr. says my son is negative for Lyme. He had a "positive" band 41(244%), but band 93(55%) would have been considered positive if it were only 5% higher. This lab says bands presented must have an intensity greater or equal to 60% of the cut off control band. His other bands were around 38% and not considered positive. Does anyone have any insight into how to interpret this!? Thank you so much! Link to comment Share on other sites More sharing options...
bws1565 Posted July 4, 2017 Report Share Posted July 4, 2017 Somebody once posted here that the results could be read like a pregnancy test. Is a slight positive not fully positive?? Link to comment Share on other sites More sharing options...
mama2alex Posted July 5, 2017 Report Share Posted July 5, 2017 Did your doctor test for any co-infections such as Bartonella and Babesia? If not, they probably don't know much about Lyme. Your best bet is to see an experienced, integrative LLMD who treats kids, because Lyme and coinfections are really a clinical diagnosis using testing as an aid. There are just too many false negatives with all of the tests to relying on testing 100%. Link to comment Share on other sites More sharing options...
Sirena Posted July 6, 2017 Report Share Posted July 6, 2017 You're dealing with Lyme. Welcome to the club. It sucks--but at least you can get on a treatment path. So look and see if the bands you mentioned are for an IgM western blot or IgG western blot? So now, like mama2alex said, you need to screen for other co-infections including babesia (Igenix panel the best bc does a suite of tests and u can get babesia duncani and babesia micoti) , bartonella, rmsf, erlichia, anaplasmosis and Clamydia pneumonia ( like myco--a type of walking pneumonia). And make sure you get kiddo's IgG values and classes checked. They are quite likely to be surpressed--which will explain weak intensity but present bands on western blot. You are welcome to PM me if you would like a more detailed explanation of the tests. Sirena Link to comment Share on other sites More sharing options...
kam2017 Posted July 7, 2017 Author Report Share Posted July 7, 2017 Thank you so much for the replies! My son's pediatrician is not an expert in PANDAS or Lyme but was aware enough and willing enough to know to test for them. He is also open to the information that I bring in to him. I don't know how this happened but the lab drawing the blood( in CA) somehow messed up and did not get all of the blood vials to Medical Diagnostics Lab on the east coast. The ped. did order testing for co-infections, but Erlichia chaffeenis(HME) & Anaplasma phagocytophila(HGE) by Real-Time PCR and Babesia WA1 by Real-Time PCR also from MDL were not completed due to the "lost" vial. I find Medical Diagnostics Labs results very confusing, they report that my son does not have Lyme. The portion of results we did receive were Lyme Disease( B.burgdoferi)DNA by Real-Time PCR - Negative Lyme disease Western blot(IgM/IgG) IgM( no bands present, but band 34 was 42% of their control band) IgG(they only count band 41 as positive(244%), but bands 18,93,66,58,39 and 34 are all btwn 35-55% of their cut off band( which needs to reach 60% to be considered positive). Bartonella henselae IgG/IgM by ELISA -Negative Babesia microtiiGG/IgM by ELISA - Negative I don't understand how the control band comes into play and how a band can only be considered positive if it reaches the intensity of 60% of the control band? Would someone without Lyme show any intensity on any of these bands or would they be a total zero%? My son definitely fits the PANDAS description( tested positive for rapid swab strep test twice and has strep antibodies and mycoplasma antibodies) He had a sudden onset in April 2017 when he had strep. This began his extreme urinary frequency, rages, defiance, sensory issues( shirt biting) and getting more wild as the day goes on. He previously was a happy, sweet, playful boy and these behaviors did not exist! Thank you again! Link to comment Share on other sites More sharing options...
bobh Posted July 7, 2017 Report Share Posted July 7, 2017 I believe (but am not well versed in this subject) that sometimes "partial results" that show up could be due to cross-reactions due to other co-infections that create similar but not identical responses. I don't know Med Diagnostics lab, but if they do the "CDC-sanctioned" lyme test only, their test would have a high false negative rate, and, if all that is true, you simply have a poor test result that isn't correct. Link to comment Share on other sites More sharing options...
mama2alex Posted July 11, 2017 Report Share Posted July 11, 2017 If you want to pursue testing through your current doc, and they are open, I'd ask them to order Igenex tests for Lyme and all coinfections. The partial reactions are very suspicious - many times the immune system is so suppressed by chronic infections that you only get a weak response on some bands, or even no response at all. Igenex is used by most LLMD's, though their tests can also produce false negatives. In the end, if there's any question of Lyme, you'll need to see a Lyme-literate doctor. Link to comment Share on other sites More sharing options...
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