BASAL GANGLIA LESION

[EAMom]

I'm confused by this, too. My dd also had very, very high anti-D1. Her anti-D2 was within range. Her camK was 187. She had severe OCD AND significant tics/choreiform-movement issues. She was textbook PANDAS presentation, and standard treatments--IVIG, abx, steroids while symptomatic, have brought her back.

 

Wondering, and EAMom hoping maybe you know, if immune deficiencies/low overall immunoglobulins would affect results? Would the levels for someone whose body doesn't produce enough IgG in general be a reliable indicator of elevated or normal levels on a test like this? I don't know enough of the science behind this test to know if that would make a difference. But if it does, I wonder if there've been any studies to determine if SC patients show a similar trend toward low normal to low immunoglobulins as it seems to be fairly common with PANDAS. Also, I wonder if they measured subjects quantitative immunoglobulins, b/c it seems important if that would affect the results. And if it does, and there is a different pattern of quantitative IgG levels between SC and PANDAS patients, wouldn't that impact the interpretation of results? If that info is unknown, seems like some follow-up would be necessary, and might yield more info or clues about what this all means.

 

Will be interested to see what else comes up about this, especially given my dd's somewhat illogical results.

 

I suspect that your dd's results are right. My understanding is that high D1 was seen on PANDAS kids (Cunnigham) and was associated with OCD. High anti-lysogangliosides were associated with pandas tics (don't quote me though).

 

Don't know how immune def would affect results--way over my head, but good question!

 

Just to keep everyone on their toes DS;

cam 160

only D1 elvated 4000..range 500-2000

TICCER...all day all night...i guess some of the tics could be compulsios..but idk..

only ocd that i have finally put a finger on is Triatellanmia..at the start of each allergy season, Starting in february for about a month and then again about august..

Love to hear thoughts on this

 

was anything else elevated? what was anti-lysoganglioside?

[Fixit]

Nope..just camk 160

and the D1

[norcalmom]

Cunningham has been dragging her feet- she has all the answers to these questions. At the last conference she said she had "several papers in her briefcase" about the results she found in her study (the "study" in which anyone that ever had CAM K / cunningham tests done - thousands of patients) indicating that she would be publishing at any minute...this in answer to my very question during the Q and A- what are you doing with all that data...we need it!!

That meeting was in Irvine 6(?) months ago...and that study closed over a year ago! What the heck is taking so long? from what I'v heard - the numbers have been run and correlated. Maybe she is waiting for the opening of her lab.

 

On the abstract referenced above - my suspicion is that they have created a new subgroup of pandas (but they don't call it pandas)- that perhaps this is what we consider our kids to be- the "real" pandas - and they call it encephalitis. It may be a matter os semantics.

 

I don't think we know enough about the D1 and D2 - I know one of my son't went up after IVIG - when cam K came down, symptoms were nearly gone. I'm sure that like everything these can fluctuate., maybe even daily, and we're a long way off from anyone doing a study on that. My understand is that Cam K - is the most reliable measure of this kind of activitiy- it indicates levels of auto-antibodies of several kinds, not just the 4autoantibodies that Cunningham choose to look at (there are alot more, she choose 4 most like suspects, but has not ruled out there could be others).

 

comments on the D3 /MS - I didn't say it caused it (did I?)...but there is some sort of correlation, based upon a theory that you don't find MS near the equator. There are several really good studies on D3 and MS as a treatment, as well as dramatically improving results of some of the treatments when done together. Two friends with MS were told immediately to start fairly high does D3 by MS experts (and they were throughly vetted for Lyme - that is something most MS patients get a really good going over on) .