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2 More Doctors Weigh In on LeRoy


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Though Dr. Pichichero appears to prematurely assume that PANDAS has been tested for and found to not be a factor, at least he's bringing it up and naming it as a viable consideration.

 

YNN: Massive Conversion Disorder Would Be "Unusual"

 

"As a physician I'd be extra careful,” he said. "Whatever rare possibilities are there should not be unexplored."

 

 

 

He meant should be explored.....right?

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Though Dr. Pichichero appears to prematurely assume that PANDAS has been tested for and found to not be a factor, at least he's bringing it up and naming it as a viable consideration.

 

YNN: Massive Conversion Disorder Would Be "Unusual"

 

Dr. Michael Pichichero has spent most of professional career studying strep bacteria. He says the antibodies the body produces to fight it can attack a part of the brain that controls voluntary movement. It's called Pediatric Autoimmune Neuropsychiatric Disorders, or PANDAS.

 

"You can make the diagnosis on the very first case,” Pichichero said.

 

Pichichero says the strep antibodies appear in a specialized blood test; one he's written about extensively and one the treating physicians in LeRoy should be aware of.

 

"If somebody has raised the idea of PANDAS or Sydenham's chorea, I'd be fairly certain that blood test has already been done and it was negative,” said Pichichero.

 

Okay...sorry if I'm being daft, but WHAT BLOOD TEST IS HE TALKING ABOUT? One would think ASO (maybe anti-dnase B) ??? Don't these strep experts know that that ASO only rises in 53% of those with culturable strep? (And if you factor in that these are girls, the numbers go down even further. Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness Whereas 54% of boys had elevated ASO or Anti-DNAseB In addition, 23% of girls did not have a rise in ASO or Anti-DNAseB despite a positive throat culture whereas 14% of boys had this situation. So... per Buster's survey. 85% of girls with PANDAS did not get elevated ASO or Anti-dnase b! HOW CAN THESE DOCTORS RULE OUT STREP WITH A BLOOD TEST THAT only "worked" for 15% of PANDAS girls????

 

Or...is he talking about the Cunningham test (which isn't available)?

 

And did ANYBODY bother to throat culture these girls????

 

How MANY cases of PANDAS and SC are we missing in girls b/c they don't get a titer rise??? Is THAT why "conversion disorder" is more common in females...b/c they actually have PANS or SC but it gets missed b/c they are counting on a blood test which is incredibly unreliable in females????

 

Can you tell this situation is making me hysterical? :wacko:

Edited by EAMom
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Markowski, a biological psychologist and a professor at SUNY Geneseo :

 

He's been closely following the mystery illness in Le Roy in the media. He says the culprit may be a common bacterial infection :

 

"It seems to fit all the symptoms.

 

"The facial tics, uncontrolled movements in the face."

 

http://rochester.ynn.com/content/top_stories/572334/healthy-living--can-pandas-be-ruled-out-/

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Another Dr. whatever-his-name-is coming from nowhere to claim the crown of PANDAS, and probably suffers, like so many others we have met and paid to for their less than professional ego-inflated damaging opinion, from a condition called "imaginary expertism identity disorder", thinking he is a leading medical scientist who has done nothing but research this mysterious condition. Some clear symptoms of the condition is the tendency to claim expert knowledge of anything a patient seems to have, never admit you are not familiar with a possible condition, esp. if rare, not yet well known, and the like, an obsessive search for fame, status and riches and compulsive tendency to jump before every reporter, esp. one with a camera and verbally present oneself as God's second in command.

 

Any idea if this can be treated with ABX, IVIG, PEX, Steroids or could this be related to conversion disorder or sorts?

I am afraid such individuals are highly dangerous to society and themselves.

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Okay...sorry if I'm being daft, but WHAT BLOOD TEST IS HE TALKING ABOUT? One would think ASO (maybe anti-dnase B) ??? Don't these strep experts know that that ASO only rises in 53% of those with culturable strep? (And if you factor in that these are girls, the numbers go down even further. Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness Whereas 54% of boys had elevated ASO or Anti-DNAseB In addition, 23% of girls did not have a rise in ASO or Anti-DNAseB despite a positive throat culture whereas 14% of boys had this situation. So... per Buster's survey. 85% of girls with PANDAS did not get elevated ASO or Anti-dnase b! HOW CAN THESE DOCTORS RULE OUT STREP WITH A BLOOD TEST THAT only "worked" for 15% of PANDAS girls????

 

 

EA Mom - Are the results of Buster's study posted somewhere? Could you post the link or PM info to me? I can also do email if you send me a PM I'll give you my email address.

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EA Mom - Are the results of Buster's study posted somewhere? Could you post the link or PM info to me? I can also do email if you send me a PM I'll give you my email address.

 

Here's something

http://www.latitudes.org/forums/index.php?showtopic=9495&st=0

 

and http://www.latitudes.org/forums/index.php?showtopic=9483&st=0&p=79583&fromsearch=1entry79583

 

This is something that we should re-run at some point (or maybe Swedo/Cunnigham can look at titers girls vs. girls in their study), but don't know if they would even have as many kids, boys/girls). But, if we combine it with pandas folks on fb, we could probably get a good #.

 

And, just thinking of cases on the forum (Peglem, T. Mom, my dd) it's the girls that rarely have elevated titers.

Edited by EAMom
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Another Dr. whatever-his-name-is coming from nowhere to claim the crown of PANDAS, and probably suffers, like so many others we have met and paid to for their less than professional ego-inflated damaging opinion, from a condition called "imaginary expertism identity disorder", thinking he is a leading medical scientist who has done nothing but research this mysterious condition. Some clear symptoms of the condition is the tendency to claim expert knowledge of anything a patient seems to have, never admit you are not familiar with a possible condition, esp. if rare, not yet well known, and the like, an obsessive search for fame, status and riches and compulsive tendency to jump before every reporter, esp. one with a camera and verbally present oneself as God's second in command.

 

Any idea if this can be treated with ABX, IVIG, PEX, Steroids or could this be related to conversion disorder or sorts?

I am afraid such individuals are highly dangerous to society and themselves.

I think you may be on to something there.

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And, just thinking of cases on the forum (Peglem, T. Mom, my dd) it's the girls that rarely have elevated titers.

 

i've wondered if there is some correlation btwn elevated titers or not and symptom clusters -- have we seen that or is there not enough study about symptoms cluster -- perhaps it could relate to specific strains - ? causing particular sypmtoms and not elevating titers - ?

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And, just thinking of cases on the forum (Peglem, T. Mom, my dd) it's the girls that rarely have elevated titers.

 

i've wondered if there is some correlation btwn elevated titers or not and symptom clusters -- have we seen that or is there not enough study about symptoms cluster -- perhaps it could relate to specific strains - ? causing particular sypmtoms and not elevating titers - ?

 

Strain of strep is supposed to influence the titer response.

 

I really hope these girls go to NIMH...b/c we could probably find out a lot of your answers. Maybe they can do strain analysis (not sure if Dr. T. could do that)>

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For what it is worth regarding particular strains casuing particular symptoms.....this is just my experience but both my boys presented with PANDAS after the same strep infection....one presented with tics (zero OCD..... just motor tics,no vocals...some ADHDish symptoms) and the other presented with primarily OCD, debilitating OCD, but also had vocal tics....BAD vocal tics, no motor tics. So, for them,the strain produced dramatically different symptoms and severity of symptoms.

Edited by P.Mom
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