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Posted

I got the rest of my Cunningham test results today. The CAM K was 169 which I understand, but not so sure I understand the rest. Looks like - bottom line - it's all normal?

 

Draw date 9/27/2010

 

Anti-neuronal Antibody Titers

 

Anti-Lysoganglioside 2 hours

patient 80

positive control >1280

negative control 80

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 250

positive control 16000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 1000

positive control 16000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 2000

positive control 32000

negative control 2000

normal range 2000-16000

normal mean 6000

Posted

looks like they are all in normal range. two are at low end of normal range, which I've not seen before - I have only heard of pandas kids have too much of these anti-neuronal antibodies. I don't think too little is the issue, but you could ask if low levels on Anti-Tubulin and Anti-lyso mean anything.

 

I'm wondering if your child was in exacerbation, or at baseline when you did the blood draw? and if he has any already identified infection links (pitand or strep or lyme or myco P)? or if is immuno deficient in any way?

 

We took my son's at baseline. He was only high in one anti-neuronal - anti-lysoganglioside. But Cam K of 163...I've always wondering if he would have been off the charts in all the antineuronals if we did it during an exacerbation, or if only his Cam K and antilysoganglisode would have gone up, and rest would have stayed same.

 

Anybody out there have results for Cam K tests in/out of exacerbation (or before and after treatment) and seen if more anti-neuronals are involved, or if only the specific ones your child had when no exacerbating changed?

Posted

I'd say he was in exacerbation when we did the draw - not severe but it was starting up. He has no other identifiable infection. He has a subclass deficiency.

 

Just confused why everything else would be okay yet the Cam K high?

Posted

I'd say he was in exacerbation when we did the draw - not severe but it was starting up. He has no other identifiable infection. He has a subclass deficiency.

 

Just confused why everything else would be okay yet the Cam K high?

 

I believe lyme can elevate CamK on her test but don't know if it would also elevate the other markers. Dr Cunningham has published on an autoimmune component of lyme and recently presented at one of the lyme conferences. I think it's worth an email to her to ask for clarification. We can all speculate, but she's the real authority and I probably wouldn't feel comfortable with anyone's answer but hers.

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