Cunningham Study

[purple66p]

We got the rest of the Cunningham study results today. I think they just confirm that my son does have PANDAS.

 

Cam Kinase II: 177 (in upper half of Pandas group)

Anti-Lysoganglioside: 1280 (80-320 normal)

Anti-Tubulin: 500 (250-1000 normal)

Anti-Dopamine 1: 8000 (500-2000 normal)

Anti-Dopamine 2: 8000 (2000-16000 normal)

 

Has anyone else had such a high Anti-Lysoganglioside?

 

Regarding Anti-D2, my son takes Abilify, which acts as both a D2 agonist and antagonist to regulate D2 levels, so I wonder how that affects his score. I posed this question to Adita Blanco, who sent me the results from Dr. Cunninham's lab. I'll let everyone know what I learn there.

 

According to Dr. Cunningham the high Anti-D1 and D2 mean that there is too much dopamine running around in his brain. (From Dr. Cunningham's letter "Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain.") I find it interesting that ADHD is generally thought to be a lack of dopamine signaling, and schizophrenia is thought to be too much dopamine activity. My son definitely leans toward the not-quite-in-touch-with-reality end of the spectrum when things are going badly!

 

Thanks for reading my long and rambling post...

[tantrums]

I don't know, but I hope you don't mind my selfish question - When did you send yours in? It's been exactly one month today since they got the bloodwork and I'm obsessively checking emails and anxious to get home to check the mail!

[fuelforall]

We got the rest of the Cunningham study results today. I think they just confirm that my son does have PANDAS.

 

Cam Kinase II: 177 (in upper half of Pandas group)

Anti-Lysoganglioside: 1280 (80-320 normal)

Anti-Tubulin: 500 (250-1000 normal)

Anti-Dopamine 1: 8000 (500-2000 normal)

Anti-Dopamine 2: 8000 (2000-16000 normal)

 

Has anyone else had such a high Anti-Lysoganglioside?

 

 

 

 

Hmmmm. Well, my son was on the border with the anti dopamine levels and was normal with anti-tubulin BUT his anti-lysos were the same as your son's. My son's Cam K was lower, mid-range. My son definitely leans toward the not-quite-in-touch-with-reality end of the spectrum when things are going badly! Ah, yes, that's my son all right. My recollection of the Cunningham was that my son was also on Abilify and Strattera.

ANTI LYSO SUGGESTS LOTS OF TIC ACTIVITY. Per an earlier post where one of our moms interviewed Dr Cunningham a few months back.

 

I dug this out, may be helpful

The research by Kirvan and Cunningham is indicating that it isn't too much or too little dopamine, but rather that the antibodies interfere with dopamine receptors preventing the regulation of signal. The analogy I use is that PANDAS antibodies are like loud commercials on a television that cause you to go over and turn down the volume and then when your regular show comes on you have to go back and turn back up the volume. This inability to control the "volume" because of the interference of the antibodies is what is causing the signalling issues/cross-talk.

 

So it isn't the dopamine per se but rather that the antibodies are binding to the dopamine receptors and interfering that's causing the issue for PANDAS kids -- at least that's the theory.

 

And this too- all credit for these sections go to the forum.

 

The Cam Kinase is too active. The antibodies to strep are stimulating extra neuronal signaling in the basal ganglia.

It might help to understand that the basal ganglia is a "monitor and adjust" center for sensory motor signals going into the brain from the body and return signals from the brain back to the body.

 

So the moment new sensory info comes in, the signal is upgraded or downgraded to reflect even minor changes in what the senses perceive in the environment.

 

Abnormally high CamK activity, causes the signaling to be erroneously modified so that the body response is exaggeratedly intense or deficient.

 

But, also the signal going into the brain is being incorrectly modified so the brain is receiving altered signals to respond to in the first place.

 

In short, the part of your brain that is supposed to organize incoming/outgoing sensory/motor signals is in chaos.

 

Hope this is helpful.

[fuelforall]

[Hi, I found the link to the interview with Dr Cunningham.

 

http://www.latitudes.org/forums/index.php?showtopic=9361&st=0&p=78479&hl=cunningham&fromsearch=1entry78479

[purple66p]

Tantrums--We sent ours in 9/13. I understand--I obsessively checked email as well! I think they must have a lot of work, probably because this board is so active!

[purple66p]

Fuelforall: thanks! very helpful reading.