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Further Testing for Lyme


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Igenex seems to be the way to go. There may be other testing that others can recommend. My insurance paid for 80% of the first one we did. My insurance next year probably won't so it really depends on your plan.


Good luck!



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We were reimbursed about 70% for our Igenex testing. You get a 15% discount if you test multiple family members at the same time. You just need to tell them so the file gets flagged.


Igenex is not perfect. It has flaws same as all the other labs. It's just better than the labs that use the CDC criteria. There is a new lab that's come out recently that cultures spirochettes rather than looking for antibodies. But it is pricey and not sure if insurance covers yet. One option is to see an LLMD first and let him/her guide you.

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The infectious diseases doc that we saw told us to use Stoneybrook, because no doc will argue with their results, and they will report bands if you request it, rather than just a positive or negative result. After doing some research we opted to go with IGeneX anyway. This is because Stoneybrook uses CDC criteria, which excludes bands 31 and 34. These bands are highly specific to lyme. I did not want to waste my money on a test that excludes any evidence of infection. Here's some info on that:




And here, copied from Dr. J's website:


CDC Criteria are Confusing in Real Clinical Settings


CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.


CDC Western Blot IgG surveillance criteria include 18, 23, 30, 37, 39 and 93 and exclude bands 31, 34 and 83.


It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.


The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.


This does not make sense.


The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 10, 000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives."






Also of concern to me, was that we first did a lyme test on PANDAS-DS through a regular lab here in Canada, which came back negative. No bands reported, no further info, just a negative. I wish I could go back in time and NOT have that test done! Having that negative test on record has not helped our situation. When DS's elbows and knees started swelling we went to the head of rheumatology and immunology at a major teaching hospital and I said I think he has lyme. The doc said his test is negative so we've ruled lyme out. I wanted to keep pursuing lyme and asked him about false negatives. He said DS's test is negative, end of story. Obviously, it was far from the end of the story. We got a very positive result from IGeneX, and also found out I am even CDC positive. I no longer had any doubts, but we had to pursue treatment privately, because officially DS has that darned negative test on file. So everything was out-of-pocket, until we found an amazing GP willing to stick his neck out for us, and assist us with treatment. He saw the dramatic improvement in DS with our private treatment, and also no longer has any doubts. But he does remind me from time to time, that he is treating aggressively for something that DS has tested negative for, and his neck is on the line if anyone questions what we are doing. Soooooo frustrating! The medical system here does not understand lyme at all. They don't even understand that there are no reliable tests. At the end of the day lyme is a clinical diagnosis, and the tests can only add additional information. They can not confirm or rule out lyme at all.


That's been our experience with lyme testing. I hope that helps!

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