just theorizing

[norcalmom]

OK, so I'm not a research scientist, but I'm thinking about how they are going to do this new pandas study. The origial was 20 years ago, and they know a little more now (not nearly as much as they should becuase it looks like pandas interest went dormant for 15 years or so)

 

With cunninghams research, they now know that lyme can also cause the same clinical reaction, as well as Cam K antineuronal reaction, as strep, in certain kids.

 

So, are they going to give every kid a lyme test(and mycoplasma) to make sure they don't have lyme before letting into the study? so they can isolate strep only? Or have two groups - the lyme group and the strep group...or three groups (since strep is everywhere, and the lyme triggered kids probably also reacted to or had strep at some point) the strep group, the lyme group and the strep + lyme group?

 

Scientists out there - arent' they going ot have to screen for this now that they know bout it?

[trggirl]

And my question is what else causes the high CamK? I suspect if Lyme and Strep cause it to increase, then other things cause it to increase as well. So why just look at Lyme and Strep?

Edited September 30, 2010 by Trg girl

[MomWithOCDSon]

And my question is what else causes the high CamK? I suspect if Lyme and Strep cause it to increase, then other things cause it to increase as well. So why just look at Lyme and Strep?

Certainly, strep, myco p and lyme are just the tip of the iceberg!

 

Remember that web site, "Stop Calling It Autism," where the family found that their son's autistic symptoms had been caused by a herpes virus? Bet that kid would have basal ganglia inflammation and higher CamK to boot!

 

What about irratic behavior in elderly people with UTI's?

 

It would be wonderful if they could examine ALL "mental illnesses" to see if there is a cohort between the manifestation of the illness and CamK, but don't they have to narrow it down, at least in the beginning, just to get all this rolling? Don't we run the risk of diluting the resources and results if we try to throw too many things at it at once?

[KeithandElizabeth]

What a great question. I know that Dr. Cunningham is discovering that many families have had positive lyme tests so I would assume that she is aware of this.

 

I am thinking of redoing my daughter's (positive for strep, mycoplasma, lyme and babesia) Cunningham test (179 Cam K and 3 out of 4 anti-neuronal levels VERY high) to see if they have gone down dramatically with lyme treatment and without an IVIG.

 

What a great question though because, depending on the microbes, different antibiotics would be needed and I think that IVIG will not be as successful for the kids who do have lyme disease.

 

Elizabeth

[norcalmom]

yes. agree. I once googled cam K, and there are a number of other conditions that raise your cam K. KAwasaki's disease is one...there are others. I don't know about the anti-neuorals though, and I think that the other diseases present with symptoms other than neuor-psyc, and have other tests that can be run, to diagnose them. But good point.

[norcalmom]

Keith and Elizabeth thats exactlyt he sort of info I'm interested in seeing - if your symptoms have gone away with Lyme antibiotics alone, did your cunningham levels go down too?

 

Out of curiousity - did your child react to only strep exposure, or all viruses (pitand?).

[Megs_Mom]

For our dd (and our doc) the Cunningham test was never a "100% PANDAS", but was a strong indicator. And an even stronger indicator that an autoimmune/inflamatory process was happening. It meant that it was not "traditional OCD" and that we needed to find a medical intervention. We had high ANA levels and low WBC, so we were on a search for a lupus like disease at the time. Her data point helped us lean in the PANDAS direction, taken along with classic response to prednisone.

 

She is one of the most interesting, and ethical, women that I have ever met, and I'm sure that all our data points will result in clearer testing for future kids.

[H Mom]

I wonder if the issue is more that these kids have an open blood-brain barrier such that any of these infections result in mental symptoms that kids with closed blood brain barriers do not get? Just a thought. Then they just need to find a way to close the blood brain barrier.

[norcalmom]

yes, I would think that cases where all the symptoms disappear, yet the cunningham neuronals remail high would indicate that something closed the BBB.

 

In cunningham's original study, she tested cerebral spinal fluid too...to make sure it was crossing the barrier, not just in the sera.

[trggirl]

Norcalmom, do you remember what you googled to see what else raises the CamkII? I have tried to do that but have always come up empty. I may not be putting the right words in the search. Any help would be appreciated. I would love to see other things documented as raising the level.

[norcalmom]

I don't remember. It was one of those ..one thing leads to another searches. I think I may have started just looking at Cunninghams research papers (not pandas specific), and I was looking at heart involvement, because Cam K involved in heart issue they think linked to SC..and there is thing called Lyme Carditis...so..it was involved. At one point Buster made a comment somewhere on other things that raise CamK II ..sorry can't be more specific. It wasn't like I found a list somewhere.