Worried_Dad Posted January 9, 2011 Author Report Share Posted January 9, 2011 (edited) Wanted to share some feedback we received from leading researchers who have been very helpful to us over the past few years. Dr. Leckman (who is based in CT so familiar with Lyme as well as PANDAS) recently met with both Dr. Charles Ray Jones and Brian Fallon to discuss their approaches to treating Lyme. Said he was quite impressed with Dr. CRJ, who uses antibiotics and IVIG in his practice (similarly to the PANDAS docs). Said they haven't seen a lot of Lyme among PANDAS patients but there have been a few. Given the symptom similarities and complexities, doesn't doubt that Lyme is sometimes misdiagnosed as PANDAS and vice versa. His advice for us was: if your ds is doing well on current abx, maintain a steady course. Dr. Cunningham responded with some details similar to what P.Mom already posted ( http://www.latitudes.org/forums/index.php?showtopic=11478 ). She did add one bit of info that I found fascinating: "We do know that immune responses against group A streptococcal antigens may crossreact with the Lyme agent, Borrelia burgdorferi." So personally, this reinforces to me that the testing isn't definitive enough at this point to clearly, unambiguously distinguish between PANDAS and Lyme / co-infections in some cases. As others have posted, the "Cunningham tests" for PANDAS/SC can also show positive (at least for CaM K II) for kids suffering from Lyme. And - as the IGeneX lab report repeatedly stipulates - other viral / bacterial agents (including GAS, per Dr. C) can trigger false positives on Lyme tests. At the end of the day, both PANDAS and Lyme remain primarily clinical diagnoses... and they have so much symptom overlap that it's awfully tough to distinguish between them. We have an appointment with a new local LLMD next week. We intend to review the labs and have a frank discussion about our son's / family's repeated elevated ASO titers and remarkable progress on augmentin XR. He'd need to present very compelling arguments for us to risk "messing with a good thing" for our son at this point. Really just hoping he's a good guy who is open-minded and honest about the unknowns. If that's the case, he'll be an invaluable medical asset for our ds in the future, no matter how things play out. I'll post the key aspects of that discussion when I can. Hope 2011 is starting well for everybody! Edited January 9, 2011 by Worried Dad Link to comment Share on other sites More sharing options...
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