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In the Dallas conference last year, William Shaw, director, Great Plains Lab spoke about PANDAS some, one of the things he said was that pyruvate kinase had just been shown, independently by 2 different labs, as what gets attacked by the strep antibodies gone bad. The conference was in May 2009, and the "just been shown" meant late in 2008. He suggested pyruvate as a possible supplement to help. It is available in health food stores, is taken some by athletes and people looking to lose weight. Puzzling he didn't mention using a pyruvate kinase test as diagnostic, or mention the CamKinase test and how it relates or doesn't. Not sure the supplement of pyruvate is a good idea, but probably will be trying. I muscle test good for it, which likely indicates a deficiency, and not necessarily that it's a good idea. In theory, if it's being attacked, perhaps taking more pyruvate will just mean I have more attacked/damaged pyruvate, and not sure why that would be a good thing. Or, perhaps the pyruvate will be so much that the antibodies can't kill it all and the end result will be good. Who knows? Has anyone tried? Can anyone shed any other light on his comments?

 

Michael

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do you know where the pyruvate kinase is located? is that a protein in the blood?

 

does this mean there is a 'deficiency' of pyruvate once the antibodies get at them?

 

so replacing this pyruvate, what is supposed to happen?

 

because isn't the 'cam kinas' a protein that was thought to be 'activated' in children with PANDAS, etc.?

 

:)

Faith

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In the Dallas conference last year, William Shaw, director, Great Plains Lab spoke about PANDAS some, one of the things he said was that pyruvate kinase had just been shown, independently by 2 different labs, as what gets attacked by the strep antibodies gone bad. The conference was in May 2009, and the "just been shown" meant late in 2008. He suggested pyruvate as a possible supplement to help. It is available in health food stores, is taken some by athletes and people looking to lose weight. Puzzling he didn't mention using a pyruvate kinase test as diagnostic, or mention the CamKinase test and how it relates or doesn't. Not sure the supplement of pyruvate is a good idea, but probably will be trying. I muscle test good for it, which likely indicates a deficiency, and not necessarily that it's a good idea. In theory, if it's being attacked, perhaps taking more pyruvate will just mean I have more attacked/damaged pyruvate, and not sure why that would be a good thing. Or, perhaps the pyruvate will be so much that the antibodies can't kill it all and the end result will be good. Who knows? Has anyone tried? Can anyone shed any other light on his comments?

 

Michael

 

So does this mean, none of the parents went "rogue" and started ramming it down their kid in the hopes of getting results?

If I'd seen this before, I would have thought seriously about it.

Buster, would you weigh in here?

 

Michael

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Faith,

 

I believe he said it is a protein in the blood. He didn't talk about it for that long, so your questions are about the same as mine. Yes, I think that is exactly what he was saying, that this activity would cause a deficiency of pyruvate, which is why he suggested the possibility that supplementation might be helpful. But he didn't address the question of, will there be more antibodies to destroy the supplemented pyruvate, and what is the result of all the destruction. In the older thread, you see he was starting a study, and the reality is that he probably did not know the answer to these questions.

 

Yes, I was also confused to be hearing he so much about cam kinase, and then he said that it's already figured out, it's pyruvate kinase. No idea...

 

Michael

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If the concept is the same as what I think I'm understanding from the n acetyl glucosamine reading, you are trying to block the antibodies receptors. You are not trying to supply the host with anything. You are simply trying to plug up the receptor on the antibody the is attacking the host. However, my understanding (and this might not be worth much) is that pyruvate is a substance, and organic acid (straight from wiki). How this works it's way into a situation where neruonal tissue is affected, I have no idea.

 

My understanding of Cam kinase is along the same lines. It's not "something" it's a process. Calcium enters the cell, hits one of the main receptor sites, calmodulin (or more accurately "binding protein") and starts a "process."

 

Maybe this discussion can clarify some things for me too. I know Dr. Shaw is very educated guy and from the abstract from the novartis study, I don't find it hard to believe that there is cross reactivity btwn things other than the strep epitope (n acetyl glucosamine) and human tissue. Not sure how pyruvate kinase fits in the picture tho.

Edited by kim
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