Cunningham Blood Tests

[EAMom]

Yes, it will show with Lyme PANDAS/pans.

[EAMom]

More on Lyme/PANDAS from http://www.latitudes.org/forums/index.php?showtopic=9361&page=1 (P. Mom's visit to Dr. Cunningham in OK)

 

"3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics."

[norcalmom]

PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost all the literature says they are believed to be triggered by an infection preceding the onset. They don't tend to stay too focued on what kind of infection (and we in the pandas world should move on as well - once we have tested for a number of common infections that can become chronic in our kids of course)

 

Strep is not the cause. It may be the trigger and other infections are as well. The cause is more complex.

 

Cunningham's tests seem to be the thing that can finally identify immunologic aberrations in our kids- proof that immune modulating therapies like Steroids and IVIG are justified in order to treat the disorder.

 

What we don't know is what other disorders or infections - like NMDA and MS, may have high Cam K activity. She has already said that a strep infection - in a healthy, normal individual raises the Cam K, but it does not got very high - but still raises it 10-30% (? can remember exactly) for the period of infection, and then goes down.

 

While there are still questions about testing, Cunningham has thousands of samples. She says that more than 50% of them are not strep related. And although she has not published any papers on her years of research (she has said she has several papers int he works), I don't believe she would open a lab based upon what she knows if her years of research does not support this being a very good screening test for anti-neuronal activity. Test that support the concept that this is disease that involves the immune system, and suffers will most likely benefit from Immune therapies.

 

It may also be of benefit in tracking the disease. I'm waiting my states approval so I can test my some again. He previously had very high numbers, that came down after IVIG. But now, things have changed so much I'm not sure we are still dealing with pans - or if he has learned behaviors or other problems that have resulted from pans for 4 years. I'll get another IVIG if I see his Cam K and antineuronals are high, but if not, we will pursue CBT/exposure therapy.

[T_Anna]

Has anyone gottem their results from Moleculera labs yet (since the April 22 opening)?

 

T.Anna

[EAMom]

Thanks Norcalmom! (Great explanation btw.)

 

We are in a similar boat. Our dd is not symptom free (but doing pretty good 85-90%, going to school, happy functional). There is some residual OCD which is clearly from PANDAS (but how much is "habit?"). There are other quirks, traits, anxiety which may or may not be from PANDAS. We are looking forward to repeating her Cunningham test to give us a better idea of where to direct treatment and find out where we stand vs. a few years ago.

Edited May 29, 2013 by EAMom

[bigmighty]

So, we can repeat the Cunningham labs? Sorry, if I am confused. DS's labs were submitted to Cunningham via NIH. We never saw results. Wondering if we can see original labs and have redone. How would that work? Thanks.

[EAMom]

Oh, I have no idea about getting to see your results from the NIH. Maybe contact Paul Grant? Maybe they are holding on to the results until the paper is published? Definitely ask. Do you have any idea if they are doing before and after IVIG Cunningham labs? They did that with the first study (at least for the PEX kids, not sure about the IVIG kids).

[bigmighty]

Yes. They did before and after. I emailed Dr. Cunningham and she said they took the child's name off of the NIH labs and sent them in with a numeric coding that does not remain on the child's file. So I will not be able to get them from NIH.

[EAMom]

bigmighty!! OH man!!

[norcalmom]

I can see why Cunningham's lab would be blinded to this info - but SOMEONE at NIH must have this info. Do they tell you the results of other tests, or if you were in placebo group after a certain time? (I'm pretty sure yes?)

[bigmighty]

We did get some before and after labs from NIH. But we were told that they were run at NIH and that other vials were headed to Cunningham. Yes, we were told if we had been in the placebo group or not when we came back for the 2nd week.

[norcalmom]

Then I see no reason they would not also tell you the result of the cunninhgham test. Its now a commerically availible test. Tell they you may want to take the test again and would like the information as a baseline. It seems like it might be a matter of getting the right person on the phone...

[bigmighty]

Thanks.