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Found 1 result

  1. I've not been on the forum for a while but when I need help this is where I turn. I am wondering if anyone knows what this might indicate: DS15 came down w/ PANDAS in 2011, has been throught the ringer and is doing better than he's ever done, but he's not all better by a long shot, so I thought I would have the Cunningham Panel done again to see what it's showing ... So literally 2 years to the day we have the new test results...and I have to say I'm at a loss because it's not exactly what I was expecting (now, to be honest I'm not sure what THAT was). Ok, I know the DRD1 and 2 are shocking from 2013, but note the Tubulin numbers.... His 2013 results were: DS Normal mean DRD1 16,000 1056 DRD2 16,000 6000 LYSO-GM1 160 147 TUB 500 609 CaM KII 111 95 His 2015 results are: DRD1 2000 1056 DRD2 16,000 6000 LYSO-GM1 80 147 TUB 8000 609 CaM KII 126 95 Does anyone have a glimmer as to what the Tubulin might signify? I mean, geez, it's way WAY up from the 2013 results and he was such a mess back then. I know his dopamine auto-antibodies are still out of whack on DRD2, big time, but the PEX in 2013 took the DRD1 back down into reality, thank gosh, and is THE reason he's back out in the world today....he's currently being treated by a Naturopath for Bart but it's a slow road because he feels absolutely awful when he takes the Malerone, and he's only at 1/6 of the dose. His doc says Its Not a Race, but to be honest I kind of feel like it is. If anyone has any insights or understands the significance of the individual titers I would love some feedback. I do have an appt w/ his neuro, who is a PANDAS-believer, this Friday, but I'm not sure he even knows what these mean, and there are some very educated parents on this panel whose insights I value greatly who just might, so feel free to share if so! Thank you so much, DsMom Erin
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