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Le Roy.....looks like they've been cured!


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The below quote reminds me of a TOTALLY UNRELATED incident, but it was a media circus at the time (1989).

 

 

"Some of the girls originally believed they didn't have enough stress in their lives to bring on these symptoms but Dr. McVige says now they're starting to come around."

 

 

The issue it reminds me of is when Margaret Kelly Michaels (Wee Care Nursery School) was indicted for 299 offenses in connection with the sexual assault of 33 children (1989). Turns out the kids were questioned for long periods of time in a VERY leading manner. The vast majority of the kids said nothing happened, but then after basically being told what to say, and not being allowed to leave until they said it, the kids made statements; some ended with recorded "It's all lies" at the end. Final outcome "The New Jersey Supreme Court upheld the lower court's decision and declared "the interviews of the children were highly improper and utilized coercive and unduly suggestive methods." My link

 

Unrelated I know, but I lived in this time frame and this was not an isolated type of problem, so I remember it well.

 

My point of this post is that suggestive questioning can be dangerous, and if that is what is going on, I wonder what the backlash will end up being for these girls later in life.

Edited by Mayzoo
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Good point re the suggestive questioning.

 

I would also like to point out that most people (teens) accross the world are going to have some level of stress in their lives, divorcing parents, deaths, peer stuff, homework... Stress is ubiquitous.

 

It's interesting that Kurlan refutes PANDAS as he claims that strep is so common (in the NY Times article he compares it to something ubiquitous like pizza, just b/c a child had pizza last week, doesn't prove it caused these symptoms ). The Pandas naysayers have a double standard. Stress is also exceedingly common (more common than strep in a teen I would say), yet they accept it as a cause of these symptoms while denying the possibility of an infectious trigger.

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Good point re the suggestive questioning.

 

I would also like to point out that most people (teens) accross the world are going to have some level of stress in their lives, divorcing parents, deaths, peer stuff, homework... Stress is ubiquitous.

 

It's interesting that Kurlan refutes PANDAS as he claims that strep is so common (in the NY Times article he compares it to something ubiquitous like pizza, just b/c a child had pizza last week, doesn't prove it caused these symptoms ). The Pandas naysayers have a double standard. Stress is also exceedingly common (more common than strep in a teen I would say), yet they accept it as a cause of these symptoms while denying the possibility of an infectious trigger.

 

Excellent point!!!

 

Has anyone read whether the girls are IgM or IgG positive for mycoplasma? I know Dr T is suspicious of high IgG, but mycoplasma is prevalent this season and I was wondering if anyone picked up if the 8/9 were IgM positive?

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Good point re the suggestive questioning.

 

I would also like to point out that most people (teens) accross the world are going to have some level of stress in their lives, divorcing parents, deaths, peer stuff, homework... Stress is ubiquitous.

 

It's interesting that Kurlan refutes PANDAS as he claims that strep is so common (in the NY Times article he compares it to something ubiquitous like pizza, just b/c a child had pizza last week, doesn't prove it caused these symptoms ). The Pandas naysayers have a double standard. Stress is also exceedingly common (more common than strep in a teen I would say), yet they accept it as a cause of these symptoms while denying the possibility of an infectious trigger.

 

 

I seriously question that Dr. T. would not have responded to their request. Furthermore, he put out a press release today:

 

"February 22, 2012

Press Release:

LE ROY, NY TEENS: UPDATE FROM DR. TRIFILETTI

Ramsey, NJ — February 22, 2012 — Rosario Trifiletti, MD issued the following statement today regarding the teens he is treating in Le Roy, NY. National attention was drawn to the plight of the teens when they were suddenly afflicted with uncontrollable bodily movements sometimes described as tics.

“I continue to work with a PANDAS-like diagnosis. The lab work is now complete on all nine of the patients I examined on January 29, 2012 and has shown evidence of infection by

either Streptococcus Pyogenes (the common strep throat bacterium, found in five of nine

patients) or Mycoplasma Pneumonia (a bacteria-like agent that is a common cause of a mild pneumonia-like illness, found in eight of nine patients). Two patients also meet CDC diagnostic criteria for Lyme disease. They are being treated appropriately according to the infectious agents found and are responding to treatment. In my opinion, these objective findings, which would be exceedingly unlikely to occur by chance alone, support my diagnosis of a PANDAS-like illness.

I must remain open to another possibility such as mass psychogenic illness, which can never be supported or refuted by objective findings. However, given the clinical and laboratory data, I find a PANDAS-like illness a very likely medical diagnosis in these children. I hope to see the teenagers again soon, but given that I am doing house calls from some two hundred miles away, it requires extraordinary planning. In the meantime, I remain in close contact with their parents."

 

 

 

So...if they are getting better, it is because they are getting abx to treat strep and mycoP. It is absolutely sickening that the DENT docs would be so self-centered as to not care about harming these kids by passing on lies and 1/2 truths!

Edited by tpotter
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"In the hour long interview, the Dent docs claimed they tested these girls for Lyme, how could they miss that 2 were positive?"

 

-----------

The Dent docs probably ran the standard western blot, which is notorious for false negatives. Dr. T was probably smart enough to have Igenex testing done. Also, many people sick with lyme disease do not meet the strict CDC guidelines. So, maybe the other girls also truly have lyme but don't meet the ridiculous CDC guidelines? Who knows... Thank God these girls are finally getting some basic medical treatment from Dr. T though.

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Dr. Trifiletti's press release of Wed., Feb. 23, 2012, shows how the Le Roy girls have INFECTIONS (Streptococcus Pyogenes, Mycoplasma Pneumonia, and Lyme Disease), that led to their "tic disorders".

 

Dr. Trifiletti's press release also had contact information for Dr. T., and also websites (links) for more info about PANDAS:

 

"To reach Dr. Trifiletti contact:

 

Telephone: 201-962-7284

Email: trifmd@gmail.com

Website: http://www.site.neurokidsr.us

 

 

For additional Information about PANDAS [Pediatric Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal bacteria]:

 

http://www.pandasfoundation.org

 

http://www.savingsammy.net

 

http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections.shtml

 

http://ocfoundation.org/PANDAS

 

http://www.askdrsears.com/topics/childhood-illnesses/ocd

 

http://www.pandasnetwork.org

 

#########

"

 

----------------------------

 

I hope others in Le Roy and in Corinth, NY, will contact Dr. T.

 

Sincerely,

Carol (Concerned lady)

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But Dr. T. Said the 2 were positive by CDC standards...that's not igenex is it?

 

 

Yes, Igenex can be part of CDC guidelines. Igenex is just another way of testing the western blot. If 5 of the bands are positive on the IgG and/or 2out o 3 of the bands on the IgM are positive, then it meets CDC guidelines.

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I'm not aware that Dr T is ordering Igenex testing. He ordered the standard W Blot for DS. I took the announcement to mean they were CDC positive by W Blot run by a standard lab.

 

This was the case with us as well....he uses your lab's standard western blot. I imagine it would be expensive for all those girls to send lab work to Igenex.

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