CaM KINASE results

[smartyjones]

Has anyone had cam kinase results from just a regular lab or must it come from Cunningham? What about the other anti-neruonal antibodies? Is Cam Kinase the most important?

 

Thanks.

[sf_mom]

You can not get CaM Kinase tested from anyone other than Cunningham that I know. Yes, the CaM result is the most important.

[EAMom]

It's interesting in the Saving Sammy book Beth mentions that a one of the docs (neurologist?) she saw tested Sammy's anti-neural antibiodies and they were negative so he said Sammy didn't have PANDAS. I do wonder where that neurologist sent that sample. I don't think Dr. Cunningham was running them at that time. So, I think where ever the blood was sent, the result was bogus.

 

I asked Beth if she knew where the blood went, but she didn't know.

 

I think (???) testing for anti-neural anti-bodies for PANDAS is different from testing for anti-neural antibodies for other diseases....in that there are many types of anti-neural antibodies, and you need to check for the right ones with the correct methodology.

 

Anyway, I agree with SFMom...only Dr. Cunningham.

[peglem]

The ANA that is usually run to check for autoimmune disease is an Anti Nuclear Antibody tests. It checks for antibodies that attack cell nuclei... PANDAS is a different sort od autoimmune disease in that the antibodies doing the damage are not attacking cells, just erroneously activating them

[dut]

Hello.

 

Some of the antibodies that we've seen quoted when talking of PANDAS are tubulin, myelin and ganglioside, GM1 in particular. Other labs can test for these and we had these tested along with some others for our dd.

 

I asked Dr Cunningham if other labs could run the CamKinase for our 2yr old ds, who was at the time too young to be included in her study, and she said that they were the only lab doing the CamKinase assay.

 

For our dd, at the tail end of an exacerbation she came back negative for tubulin and myelin but positive for the GM! antiganglioside (run at a normal diagnostic lab).

 

Our tests from Dr. Cunningham, blood drawn NOT during an exacerbation, came back within normal for everything except - right under normal upper limit for tubulin (1000) and 165% for CamKinase, which puts her right slap in the middle of the PANDAS range. Gotta think her BBB is in a good state at the moment and keeping that CamKinase away from her basal ganglia. In fact, if anyone has any ideas on keeping the integrity of the BBB I would be really interested.I did see a post about some things to do to help the BBB.... herbs and stuff but never found the post again.

 

Thanks....

[EAMom]

Yes...ANA which is anti-nuclear anti-bodies is run anywhere...that is a common screen for autoimmune diseases like lupus. My dd was neg on that one.

 

That is different from anti-neural antibodies that is done through cunningham.

 

Interesting that others can do the anti-neural antibodies, but not cam kinase. So, if that doc of Sammy's didn't run the right ones, such as anti-lysoganglioside or anti-tubulin, and those are the ones he had elevated...then it would have been missed. It seems like PANDAS kids can have 1 or 2 elevated but not the others. I agree that CAM kinase ll is key.