Does Cunningham test apply to PITAND?

[KaraM]

My thought would be either - since it's not a strep test....

 

Anyone know for sure?

 

Thanks,

Kara

[norcalmom]

Yes. It applies to a number of infection triggered autoimmune diseases. PITAND, not just strep specific. My ds is PITAND, and his cam K score was 176 not in exacerbation. As well as one out of range anit-neuronal. (she tests 4 anti-neuronal anti bodies as well as CamKinase). Apparently Lyme can also cause a raised Cam K score. I think Myco P too.

 

The test is not looking for infection. It is looking for abnormal amounts of antibodies in the blood. No infections need to be present for these antibodies to be there. Theory is that something in our kids bodies makes them produce more of these abnormal antibodies, and through "molecular mimicry" these antibodies "think" they are attacking the proper antigens, when in reality they are attacking the bodies own neuronal cells. At least that is how I think of it, its more complicated. Her measurements measure inhibition and cell signaling.. and I won't even dare to try to explain that.

[marylandmom]

Thanks Norcalmom,

that was a reallt good explanation! I have read and re-read the Cunningham test info trying to understand what my dd (8) camkinase of 157 meant. This is very helpful.

[KaraM]

Yes, thank you!

 

 

 

[MomofJacob]

From what Dr. C had emailed us, the test can also show bacterial or viral issues including lyme. Our ds score was 194. When speaking to Dr. Geller (1 of the Saving Sammy drs) via phone the other day, he said that we could work for years trying to find the culprit or do ivig and try to work with it now. That is what we are currently trying to do.

[musicbuff]

Yes. It applies to a number of infection triggered autoimmune diseases. PITAND, not just strep specific. My ds is PITAND, and his cam K score was 176 not in exacerbation. As well as one out of range anit-neuronal. (she tests 4 anti-neuronal anti bodies as well as CamKinase). Apparently Lyme can also cause a raised Cam K score. I think Myco P too.

 

The test is not looking for infection. It is looking for abnormal amounts of antibodies in the blood. No infections need to be present for these antibodies to be there. Theory is that something in our kids bodies makes them produce more of these abnormal antibodies, and through "molecular mimicry" these antibodies "think" they are attacking the proper antigens, when in reality they are attacking the bodies own neuronal cells. At least that is how I think of it, its more complicated. Her measurements measure inhibition and cell signaling.. and I won't even dare to try to explain that.

 

What is the process to get a Cunningham test? Would appreciate any info?

 

MB

[Kayanne]

From what Dr. C had emailed us, the test can also show bacterial or viral issues including lyme. Our ds score was 194. When speaking to Dr. Geller (1 of the Saving Sammy drs) via phone the other day, he said that we could work for years trying to find the culprit or do ivig and try to work with it now. That is what we are currently trying to do.

Dr. Geller is recommending IVIG?

[Guest fr88]

.

Edited January 8, 2011 by fr88

[eljomom]

When I read her papers, this is what I gather from it....that it tests antibodies specific to strep. However, in speaking directly to Dr. Cunningham, she said other things can cause the CamK to be elevated, like lyme or other bacteria.

 

This is confusing---so cam K can be elevated from lyme, etc., but cam k only responds to strep? I am reading and re-reading, and trying to understand this. So does CAm K NOT measure the antibodies then?? What measures the antibodies??

 

 

Where does PITAND fit into all of this? If my child is NOT a strep carrier, nor has recently had strep, nor did strep cause the major upheaval....thanks for any info.

 

 

No- The antibodies Cunningham's Test measure apply strictly to strep.

 

 

 

 

 

Q: What are Cunningham tests?

 

A: Kirvan and Cunningham have been studying specific antibodies to GABHS. Cunningham has an open trial where she is recruiting patients to investigate the relationship between these antibodies and PANDAS symptoms. Many parents on this forum have participated in the study. These studies are still research studies and are not yet diagnostic for PANDAS -- but we're all hopeful they might be soon.

 

(PANDAS RESOURCE NETWORK)

 

 

Lyme can raise Cam Kinase II because Lyme in itself has neurological side effects once its in it's late stage. People with Lyme disease report having OCD. This is why a high Cam Kinase II might turn up on the Cunningham test in response to lyme. However, the antibodies that Cunningham measures are strictly in response to GABHS. It does not tell you about current viral or bacterial infections. It tells you about antibodies in response to strep.

 

 

 

You should be asking an educated PANDAS doctor these questions- not parents who have absolutely no medical training- and furthermore have children who are not yet in remission.

 

 

 

In PANDAS, it is believed that children are strep carriers. http://www.ion.ucl.ac.uk/departments/neuroinflammation/themes/neuroimmunology

Consequently, the antibodies that Cunningham measures are always produced at a low level due to the carriage. When things like allergies, a menstrual period, and sickness occur pro-inflammatory cytokines are produced which weaken the blood brain barrier and allow the antibodies to get across resulting in molecular mimicry & neurological abnormalities.

 

 

*** 12 years in remission from PANDAS*** Age 22- Diagnosed in 1998- Treated at NIMH-

 

Prophalyctic Augmentin due to rheumatic fever.

Fish Oil

CoQ10

Probiotic

Zyrtec/Nasonex

Edited January 6, 2011 by eljomom

[GraceUnderPressure]

You should be asking an educated PANDAS doctor these questions- not parents who have absolutely no medical training- and furthermore have children who are not yet in remission.

Some of us have neither of those luxuries. Additionally, the PANDAS dr's are all giving it their best guess, too - a better educated guess than most everyone else, but a guess nevertheless & some here have valuable experience based on the failures of the PANDAS experts.

 

I am very happy for you to have a child so long in remission, but there's a lot of suffering people here with kids whose cases are more complex than straight-forward PANDAS (if there is such a thing) & your words seem surprisingly antagonistic from this side of the screen. Why post here at all if that's your attitude? Life's difficult enough already...

[GraceUnderPressure]

When I read her papers, this is what I gather from it....that it tests antibodies specific to strep. However, in speaking directly to Dr. Cunningham, she said other things can cause the CamK to be elevated, like lyme or other bacteria.

 

This is confusing---so cam K can be elevated from lyme, etc., but cam k only responds to strep? I am reading and re-reading, and trying to understand this. So does CAm K NOT measure the antibodies then?? What measures the antibodies??

 

 

Where does PITAND fit into all of this? If my child is NOT a strep carrier, nor has recently had strep, nor did strep cause the major upheaval....thanks for any info.

eljomom,

I'm certainly no expert & don't pretend to be, but it appears from the literature I have read that Dr. Cunningham was looking for markers that become increased when strep is involved, BUT these markers are not exclusive to strep and can be elevated by other bugs that are capable of neurololical impacts.

[Guest fr88]

Excuse me, but I know very well how difficult PANDAS is because I've had it for 12 years of my life. I was one of the worst cases back in 1988 when PANDAS was first discovered by Swedo. I was more or less a guinea pig for neurologists in the tri-state area. Dr. Bouboulis wasn't there. Dr. Latimer wasn't there. Dr. K wasn't there. There was NO ONE. I was a case study. I suffered for YEARS as a child before getting treatment. So no, I don't have a child who suffers from it, I SUFFER FROM IT. I apologize sincerely if my words sound antagonistic. I hate seeing people write misleading information. I simply meant that its always best to make decisions based upon what doctors says more so than parents. No further harm meant. I've tried what parents have suggested over the years- often it's done more harm than good.

 

 

You should be asking an educated PANDAS doctor these questions- not parents who have absolutely no medical training- and furthermore have children who are not yet in remission.

Some of us have neither of those luxuries. Additionally, the PANDAS dr's are all giving it their best guess, too - a better educated guess than most everyone else, but a guess nevertheless & some here have valuable experience based on the failures of the PANDAS experts.

 

I am very happy for you to have a child so long in remission, but there's a lot of suffering people here with kids whose cases are more complex than straight-forward PANDAS (if there is such a thing) & your words seem surprisingly antagonistic from this side of the screen. Why post here at all if that's your attitude? Life's difficult enough already...

Edited January 7, 2011 by fr88

[GraceUnderPressure]

Thank you for clarifying, fr88! Sorry to be so touchy. We're having a rocky time over here with my ds18 & having difficulty finding help for him. This condition sucks...

[Guest fr88]

.

Edited January 8, 2011 by fr88

[sf_mom]

I have three children who all have elevated CaM Kinase in PANDAS range, all have had PANDAS like symptoms (one had a sudden on-set triggered by step) only one child has elevated strep titers, all have elevated antibodies in one category or the other, all have strep pneumo deficiencies, two have Igg subclass deficiencies, etc., etc., etc.,

 

All of my children were carried by me in-utero but only one is genetically related to me thanks to ART (assisted reproductive technology). All have congenital Lyme Disease.

 

-Wendy

Edited January 7, 2011 by SF Mom