Many News10NBC viewers have been e-mailing our newsroom asking about the Le Roy students who are suffering from mysterious tics and spasms. Now, test results from a New Jersey doctor are in.
Dr. Rosario Trifiletti agreed to get involved after several parents did not believe the original diagnosis of conversion disorder.
Dr. Trifiletti says two of the nine patients he tested met criteria for Lyme disease, five students had bacteria that causes strep and eight had a "mild pneumonia-like illness."
Trifiletti says overall, the students he's seen likely suffer from a form of "PANDAS". That's a neuropsychiatric disorder sometimes associated with "tics". Trifiletti also says he remains open to the possibility the Tourette-like symptoms are conversion disorder.
On Thursday, we reported that doctors in Buffalo say two students are all better and three are close to recovering.
Meanwhile, environmental activist Erin Brockovich has harsh criticism for the EPA Friday morning.
She released a statement about the recent removal of drums containing chemicals from a 1970 train derailment in Le Roy. She said, �The EPA clearly dropped the ball on the largest TCE superfund site in the country." She went on to say, �It was a massive spill and the EPA had a responsibility to ensure that the polluter clean up the site, and remove the drums of toxic waste within 30 days of being filled. That never happened."
Brockovich has been investigating whether this spill caused the Tourette-like symptoms in students.
So far, tests show there is no environmental connection.
For more Rochester, N.Y. news go to our website www.whec.com
'Kete-tracker
Frequent Contributor (1K+ posts)
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posted
So... why the heck is it only these teen girls in one particular, relatively small rural area (Le Roy) that "came down" with this?? Why no GUYS? Why no 10 year olds... 40 year olds? Lyme just doesn't FIT.
I'm not saying a pathogen isn't involved, but there's something about the bodies of these (or All?) developing teenage human females that makes them "susceptible".
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
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- Just my thoughts.
There was one guy. And one 37 yo woman in the LeRoy area.
People from all over the country had responded, saying they'd had similar symptoms and been dismissed.
I do think the toxic spill (or other contaminant or beverage) could have had something to do with triggers or the way this manifested -
- and I think there are NO tests developed that can show that. The corporate scientists at chemical & food companies do not WANT such tests.
I also think the LeRoy teens could have all been exposed to infection about the same time, same area. But, even they did not all know each other or were schooled in the same bldg.
I also wonder why, when they see that PANDAS has infectious cause, they continue to call neurological symptoms a "neuropsychiatric disorder" - that's part of the PANDAS name.
Since when do infection-caused neurological symptoms become neuropsychiatric? Why not "neurological"?
Well, I know why. Most doctors are just in love with labeling patients with psychiatric disorders, no matter what.
The important thing is that infection is being looked at but I still wonder if all the teens (and the one adult) have been evaluated for the full range.
I also wonder if they will clean up their intake of additives, etc. Hope so.
It would be good to see them in a few months. Hope they all get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
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posted
It is my impression that neuropsychiatric only means neurological disease that causes psychiatric symptoms, which lyme can do. However, I'm doubtful it applies in this case because tics aren't really psychiatric.
Have seen a list of very extensive testing that was done by the school district, chemical testing that would have detected anything related to the spill. So, it is understandable that they would not see the point of anymore testing that Erin B. might do.
Not to say that chemicals and infectious agents can't produce effects that one alone would not.
[ 02-24-2012, 04:44 PM: Message edited by: poppy ]
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momintexas
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"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."
Posts: 1408 | From Tx | Registered: Nov 2009
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lpkayak
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how were they treated to get better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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'Kete-tracker
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GREAT question, LP! Was the [efficacious] treatment for an infectious agent, a toxin or a phycological or "neuropsyciatric" condition??
We may never know, esp. if just the lapse of time, or a different overall social environment was a major player in their "getting better".
And this whole "tic" thing... it's so emotionally charged. (...in more ways than one!)
...never mind that confusing "homonim" when the story's heard on the radio!!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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MichaelTampa
Frequent Contributor (1K+ posts)
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quote:Originally posted by Keebler: - Just my thoughts.
There was one guy. And one 37 yo woman in the LeRoy area.
People from all over the country had responded, saying they'd had similar symptoms and been dismissed.
I do think the toxic spill (or other contaminant or beverage) could have had something to do with triggers or the way this manifested -
- and I think there are NO tests developed that can show that. The corporate scientists at chemical & food companies do not WANT such tests.
I also think the LeRoy teens could have all been exposed to infection about the same time, same area. But, even they did not all know each other or were schooled in the same bldg.
I also wonder why, when they see that PANDAS has infectious cause, they continue to call neurological symptoms a "neuropsychiatric disorder" - that's part of the PANDAS name.
Since when do infection-caused neurological symptoms become neuropsychiatric? Why not "neurological"?
Well, I know why. Most doctors are just in love with labeling patients with psychiatric disorders, no matter what.
The important thing is that infection is being looked at but I still wonder if all the teens (and the one adult) have been evaluated for the full range.
I also wonder if they will clean up their intake of additives, etc. Hope so.
It would be good to see them in a few months. Hope they all get better. -
The "neuropsychiatric" is not really judgy as you're suggesting. It is merely a straightforward expression of the fact that the symptoms are neurological, yes, but many are of a psychiatric nature. For example, they have rage attacks, very significant OCD they understand to be irrational. It is neurologically based and caused, yes, but there are very psychiatric symptoms resulting.
Posts: 1927 | From se usa | Registered: Mar 2010
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MichaelTampa
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quote:Originally posted by BoxerMom:
Dr. Trifiletti says two of the nine patients he tested met criteria for Lyme disease, five students had bacteria that causes strep and eight had a "mild pneumonia-like illness."
By the way, I saw a different news article that had this doc reporting that 2 of the 9 met CDC criteria for lyme disease. This doc, who seems somewhat lyme aware although a PANDAS specialist and not a lyme specialist, typically uses Quest (not IGeneX). So, very significant that 2 of the 9 met the CDC criteria likely using a standard type lab.
Posts: 1927 | From se usa | Registered: Mar 2010
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'Kete-tracker
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quote: posted by MichaelTampa: "news article that had this doc reporting that 2 of the 9 met CDC criteria for lyme disease."
It's been estimated that 3 in 20 (15%) of all people in Germany have Lyme in them, though most are asymptomatic. I'm not surprised that 2 of those girls met CDC criteria for Lyme, esp. in New York, albiet up-state.
What gets MY attention is eight (out of 9?!) had a "mild pneumonia-like illness". Ah don't recall hearing about That on the news. Did he "treat" any of them for it?
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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momintexas
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posted
I saw one of the girls on Dr Drew the other night and she said she was taking steroids.
I turned it on after the interview had already started so I missed what she was diagnosed with.
She said she was better but still had tics when stressed. Posts: 1408 | From Tx | Registered: Nov 2009
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What gets MY attention is eight (out of 9?!) had a "mild pneumonia-like illness". Ah don't recall hearing about That on the news. Did he "treat" any of them for it?
- Pretty sure they are referring to the mycoplasma they found in quite a few of these patients. Some were supposedly getting abx for it..... but many were also receiving steroids, as MIT said.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I saw the Dr Drew show last night about it (must have been a repeat from a few days ago). It was scary to say the least.
He did say that some had infectious causes and were fine with antibiotics and steroids!
The saddest part was the 30 yr old lady who had conversion disorder and was twitching a lot. She said that all her labs and tests were fine, so at some point "you just have to trust your Dr" What on Earth!!!
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