Worried_Dad Posted December 17, 2010 Report Share Posted December 17, 2010 I apologize if this gets long. And I want make clear up-front that I totally believe both Lyme and PANDAS are distinct, dreadful disorders that often go tragically undiagnosed due to "medical controversy" swirling around them. So our ds has always seemed like a classic case of PANDAS to us. Rapid symptom onset after high fever Overnight explosions of PANDAS symptoms (extreme OCD, tics, anxiety, dilated pupils, urinary urgency, anorexia, emotional lability, rages, crying jags, suicidal talk, etc.; "exorcist syndrome") Rising ASO titer with each exacerbation; falling ASO with remission after successful treatment Positive response to steroid burst and IVIG Dramatic improvement on "Saving Sammy" dose of augmentin XR The helpful docs we saw (and the 1st to diagnose our ds was an LLMD who originally suspected Lyme and put him on doxycycline, which didn't help) told us that PANDAS generally comes on like a firestorm while neuropsychiatric Lyme generally develops more gradually (and that seems consistent with the pattern I saw in "Cure Unknown"). So PANDAS seemed the better fit. Add to this the fact that our entire family has shown elevated ASO titers and it explains why our son's case was so recalcitrant. And augmentin XR has been his miracle drug; from what I could tell during web research, this isn't a common abx for Lyme. That being said, all of the recent Lyme posts on here made us paranoid, so we ponied up the bucks to pay for the IGeneX Lyme and co-infection panels. Just got back the results, and they complicate things. Need help from the resident Lyme gurus to interpret this! All were negative except the following: Lyme Immunofluorescence Assay (IFA) - INDETERMINATE (1:40) Lyme IgM Western Blot - POSITIVE (18 kDa +, 31 kDa ++, 83-93 kDa +) Erlichia chaffeensis IgM - POSITIVE (1:40) We no longer have a local LLMD - our former LLMD passed away in late 2008. Our family doc is baffled by all this but wants to discuss these IGeneX results and determine next steps. Our son's doing great right now on the continued "Saving Sammy" dose of XR, but our local doc won't continue to refill this forever. I'm confused! So I wanted to ask this question. There've been a number of posts about Dr. Cunningham acknowledging that Lyme sufferers can test positive on her CaM kinase II "PANDAS" test. Lyme and PANDAS obviously share a strong infectious component, and maybe an autoimmune component too. So, by the same token, is it possible that kids who are truly PANDAS may test "slightly positive or indeterminate" on the standard Lyme tests? Our ds's Lyme results are borderline, but his (and our entire family's) strep titers are strongly positive. Sigh.... Honestly, I was praying that the Lyme / co-infection tests would come back negative so I could sleep better at night. (We also tested the entire family for Myco p - all negative, thankfully.) I'm interested in people's perspectives on this. We meet with the family doc on 12/30 to plan next steps. Link to comment Share on other sites More sharing options...
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