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Posted

Ditto...189 Cam, all anti-nerutonal antibody titers in formal range. Just got these this morning. Was wondering how to interpret as well since we have not yet received Dr. Cunningham's report.

Posted
Yea... it's weird... I'm not sure about the interpretation of that either! Maybe somebody on the board will have a clue... hopefully?!

 

On another note... my other PANDAS son had his done a little while ago, and we've received the written report... it really only states the obvious... just what you can see for yourself from the results and nothing more. His results were a lower Cam (139), but elevated titers. He had also been on antibiotics for over 6 weeks at the time of his blood draw... so that may have altered his Cam score some.... whereas big brother (above) had taken no antibiotics, etc. before his blood draw...

 

 

I don't think the abx are supposed to impact the Cunningham test results. I asked that before we drew blood. Kathy Alvarez told me the only thing that would interfere would be steroids.

Posted

Yeh, we had a similar situation. Our dd6, who wasn't in an episode at the time (3-4 months since any symptoms had been obvious), had a CaMK of 165% and all anti neuronals were within normal, although 1 was right on the upper limit of normal.

 

I'm not clear on whether 1 of the anti neuronals tested is the 1 responsible for the increased CaMK activation.

 

Anyone know?

 

If it is, could it take longer for the activation to subside than it does for the antibodies to decrease?

Posted

Did any of you ever have high strep titers or just positive strep tests and/or trial of abx?

 

 

From Buster's Corner on www.pandasnetwork.org in regards to strep...

 

•46% of subjects presented no ASO rise

•55% presented no Anti-DNAseB rise

•and 37% presented no rise of either ASO nor Anti-DNAseB

Posted

Something else...I don't think Cunningham's results are exclusive to strep. This was discussed on here before I believe. It shows there was an infection of some sort playing a role in it. Someone correct me if I am wrong.

Posted

I copied the below from Dr. T's post "What is the Cunningham Test" I'm focusing on his words that the other three antibodies aren't as important.

 

"The "Cunningham test" (the name used on this board, not yet widely accepted in the medical community) refers to a special, and as yet research level, test run in the laboratory of Dr. Madeline Cunningham in Oklahoma City. Dr. C is a well-known and world-reknown researcher on strep.

 

Basically the test involves drawing blood and measuring levels of four particular antibodies in serum. These are antibodies to an enzyme called CaM-kinase2 (CAMK2; calmodulin-dependent protein kinase II) as well as three other antibodies (that seem to be less important).

 

One's level of serum antibodies to CaM-kinase 2 appear to be able to predict whether one has infection-related vs. non-infection-related tics or OCD. The most common cause of "infectious related tics and OCD" seems to be streptococcus, and goes by the name PANDAS, but now other causes, like mycoplasma, are becoming recognized.

 

 

This is the best reference for this tests

 

http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

See Figure 3 in this paper.

 

Also see www.pandasnetwork.org for more basic information on PANDAS.

 

I hope this is not too technical!

 

Dr. T"

 

 

 

 

 

Just wondering if anybody else has had similar results??

 

I have 2 boys with PANDAS - - just got Cunningham results for 2nd son - - his Cam Kinase is 195, but all four of the titers are in the "normal" range.

 

 

Thanks,

Karen

  • 4 weeks later...
Posted
Something else...I don't think Cunningham's results are exclusive to strep. This was discussed on here before I believe. It shows there was an infection of some sort playing a role in it. Someone correct me if I am wrong.

 

I agree. I have been so focused on Pandas that I missed Lyme disease. My son could have been exposed in late August on a fishing trip. HIs behaviors started in October.His blood was checked last month. I think it was borderline to the neg. We are still going to California on Monday. When we get back I will eliminate more chemical smells from the house. This is my son to the tee.

severe fatigue

# impaired concentration

# poor short-term memory

# inability to sustain attention

# difficulty thinking and expressing thoughts

# difficulty reading and writing

# being overwhelmed by schoolwork

# difficulty making decisions

# confusion

# uncharacteristic behavior

# outbursts and mood swings

# joint pain (usually feet)

# anxiety

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