Cunningham's new lab

[Kiera]

Hi all, does anyone here have any idea of when they think Dr Cunningham will have her lab up and running? I had just ordered the kit when it got shut down last year. My ds is in constant exacerbation it seems, and I want the test to give more weight to the PANDAS diagnosis and am contemplating flying cross country to see a PANDAS specialist, thanks.

[tpotter]

Hi all, does anyone here have any idea of when they think Dr Cunningham will have her lab up and running? I had just ordered the kit when it got shut down last year. My ds is in constant exacerbation it seems, and I want the test to give more weight to the PANDAS diagnosis and am contemplating flying cross country to see a PANDAS specialist, thanks.

 

 

Last I heard, they were shooting for around April or so, but that may have changed by now. Maybe email or call her lab, and see what they say. They may have a better idea.

[Bill]

Hi all, does anyone here have any idea of when they think Dr Cunningham will have her lab up and running? I had just ordered the kit when it got shut down last year. My ds is in constant exacerbation it seems, and I want the test to give more weight to the PANDAS diagnosis and am contemplating flying cross country to see a PANDAS specialist, thanks.

 

 

Last I heard, they were shooting for around April or so, but that may have changed by now. Maybe email or call her lab, and see what they say. They may have a better idea.

 

Whoa - guess I missed all of that. Where can I go read about Dr. Cunningham's new lab? I did a quick search but nothing came up. The community needs her research!

[Kiera]

thanks for the info tpotter, I'll try e-mailing the university to see what they say! Bill, it's not a new blood test, it's the same cam kinase test she had been doing for some time now, only she had to stop doing it for legal reasons or something and is now setting up her own lab to run it.

[PowPow]

So can we still donate to the PANDAS research fund at Uni OK?

[Kiera]

I think you can, I just think the complication came with running the lab tests only, her research is ongoing, but others here may have more inside information.

[bsimon3]

Kiera, if it's not too much trouble, could you post and let us know what you find out? We have been wondering about this as well. Thanks so much.

 

thanks for the info tpotter, I'll try e-mailing the university to see what they say! Bill, it's not a new blood test, it's the same cam kinase test she had been doing for some time now, only she had to stop doing it for legal reasons or something and is now setting up her own lab to run it.

[Kiera]

Will do, awaiting reply.

[tpotter]

So can we still donate to the PANDAS research fund at Uni OK?

 

 

I don't think they have it up publicly yet. I had spoken to Dr. C. at the infectious disease conference, and that's what they were shooting for. But, they are still in the process of raising money for the lab, and having to follow all the government regulations to a "t". If you are interested in getting more information, I would suggest you contact her. The money for the private lab to do the test publicly is not part of the University of Ok, so funding is different.

 

Also, yes, you can still donate money to her OU lab through the OU Foundation (PANDAS research fund). She still needs funding to run her OU lab to do further research, as she is still working there, and much of her funding comes from private donations. I had heard (through the grapevine) that she may be starting to study Lyme. You might want to ask her that, too.

 

Please let us know what you find out.

[norcalmom]

Swedo told me directly that she is already writing up a Lyme study - I THINK mentioned that on a Blog Talk Radio interview about 5 months ago - she told me at the symposium in TX in October, and I know that Cunningham has been a keynote speaker at at least one Lyme conference - so they are already "studying" it. Cunningham has been involved for a while since she has written papers on "Lyme Carditis" and the mechanism by which Lyme can cause heart damage. (I can't even remember the name of that paper, but it was older- I was looking into SC and heart involvement, before I even considered Lyme). I think they both want to get that going, but need to wrap up the pandas study first.

 

I'd be interested in knowing (and I've emailed her this be she didn't reply) what the Lyme Cam K numbers are for those with Neuro-psych symptoms and those without. I just wonder if it is similar to the strep with and without neuro-psych symptoms numbers.

 

Less than half of the blood samples in her anit-neuronal study were from known Strep/pandas samples. She didn't tell what the other half were. (mycoplasma,lyme, strep without neuro-psych symptoms, normal sera, ...etc) .