Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

[Emily]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

Hat-tip Pathfinder. It's a small world after all. This is the outbreak I referred to in post #109 above in Uganda that has a lot of similarities with this one. Click the link for a lot of revealing information:

http://www.monitor.co.ug/OpEd/Commentary/-/689364/1321424/-/1292e61z/-/

Nodding Disease: What do the Acholi and New Yorkers share?
[snip]

That's a very thoughtful article, Pathfinder and Alert. The last question the author asks expresses the shared global concerns for welfare that I think brought his article to your attention:

If we cannot fight for the healthcare and welfare of our children, what justifies our national priorities?

Anti-NMDAR encephalitis could be compared to nodding disease as far as the possible fatal course. I read a few days ago in the Facebook support group about a 33-yr-man dying in spite of a great deal of treatment. But also I read about a 5-yr-old still very healthy after immune treatment when he was 2 yrs old. Even though nobody I know of ever mentioned 'conversion disorder' as a possible diagnosis for anti-NMDAR e, patients are frequently thought to have other serious disorders or drug or medication reactions prior to the autoimmune diagnosis. And they also need to use many medications in addition to immune treatments to treat serious symptoms, (sometime to even be able to deliver the immune treatments a coma needs to be induced.)

There is some important news here on the Le Roy cases:

http://thebatavian.com/howard-owens/...isorder-diagno

Statement from NIMH: Dr. Swedo has not seen patients, cannot confirm conversion disorder diagnosis
Submitted by Howard Owens on February 7, 2012 - 4:55pm
[snip]
We just received the following statement from NIMH:

The information you have from Dr. Mechtler regarding Dr. Swedo is incorrect. Dr. Swedo has not evaluated any of the patients so therefore cannot confirm any diagnosis.

[Digger]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

MaryF,

Please see my private message sent a few minutes ago in regards to your request.

Thanks,
Digger

[Digger]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

Emily,

There is some important news here on the Le Roy cases:

http://thebatavian.com/howard-owens/...isorder-diagno[/

Thank You for sharing this.

[Shiloh]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

This article published Dr. Rosario Trifiletti's Feb. 6th statement: http://www.wgrz.com/news/article/154...-to-Infections

[Digger]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

Timeline of Notable Events for Indiana Case
Back on 11/29/11, I reported that my nephew also had sudden onset neurological symptoms that were similar in nature to the LeRoy, New York Cases. The sudden onset symptoms for my nephew, referred to here as Sam, began on 9/7/2011. Sam's parents were not aware of the New York cases until 11/29/11.

In the attached PDF file is a detailed timeline of events extracted from Sam's father's Face Book wall posts. Most of the illness information is contained in the September 2011, October 2011 and November 2011 sections. Sudden onset entries begin on page 18. It is overly detailed to provide any clues that might help to unravel the mystery illness that has afflicted these students.

A Summary Timeline of Events Follow.
August 2010-
*Sam's father becomes ill with fever and acute sinus infection.

September 2010-
*Sam's father's ear infections continuing off and on.
*There is odd odor reported at the high school-school evacuated -students taken to ER-Not sure if relevant.
*Sam's family dog is very ill and is experiencing seizures-Not sure if relevant

October-November 2010-
*Sam becomes very ill with Tonsillitis and Mononucleosis, he misses over a week of school. Sam has bad headaches and neck aches.
*Sam's father also becomes ill as he has been battling ear, nose, throat infections. He too becomes ill with symptoms similar to Sam.

December 2010-
*Sam and his father recover somewhat from previous illnesses.

January 2011-
*Sam's father still a bit ill off and on. Begins to help as adult assistant with High school band winter drum line.

February 2011-
*Sam becomes ill again with an infection.

March 2011-
*Sam's father becomes ill again with ear infections while Sam is on the New York Band Trip
*Sam attends a trip to New York City with his band group-Bumps his head while on bus and passes out momentarily. Sam seems OK afterwards-no medical intervention is required

April-May-June-July 2011-
*Sam's father is ill a few times during this period with E.N.T. infections but not as serious in previous months.
*No mention of any illness for Sam.
*Family is camping on weekends and then also a full (2) weeks during July
*Some hot wet days throughout this period and in later July

August 2011-
*School begins
*Camping still ongoing during weekends
*Band practices prior to school session are ongoing.
*Some band performances later in August in local town parades by Band members

September 2011-
*Sam begins to keep a notebook the first week of September as he cannot remember names of family members-Sam is the only one aware of this notebook at this time.
*9/7/2011-Sam suddenly falls with seizures, intense headaches, twitching and involuntary movements along the entire left side of his body.
*Sam is hospitalized on 9/7/2011
*9/9/2011-Sam has a sinus infection that is concurrent with his other symptoms he is given a stronger antibiotic for the sinus infection.
*Sam undergoes EEG, MRI, Drug Screens, Spinal Tap, Blood Tests, that all come back negative over a period of the following 3-4 weeks of his onset date.-Doctors have no answers.
*Late September- Sam is starting to be able to walk on his own, long term memory issues, tics and headaches continue.
*Sam's family discovers there are a few others from his school who have also come down suddenly ill. One classmate exhibits many of Sam's same symptoms. Notably the memory issues occur with her also.

October 2011-
*Sam gets to go home but not to school. - Still seeing doctors trying to determine cause of symptoms
*Mid-October 2011-Sam tries to go back to school for a few hours. He needs a personal assistant. He cannot remember where his classrooms are and has problems remembering friends.
*late October -Relapse occurs-tics and memory issues are now back. A long term memory event has occurred-Sam can no longer remember people, places and things that occurred prior to 10/26/2011 including family members.
*Late October - School is limited to band class only.

November 2011-
*Sam is still working to be involved part time at school.
*11/19/11-Sam has another long term memory reset. He is re-educated concerning who family members and other relationships are. He doesn't remember friends. He is anxious about family Thanksgiving dinner because he doesn't know anyone there.
*11/29/11-Sam's parents become aware of the (6)LeRoy, NY cases for the first time.

December 2011-
*Sam is doing better-more activity with friends and school events
*12/21/11-Sam begins full day classes at school.
*No significant set backs on motor or memory issues since 11/19/2011.
*Sam still cannot remember most if any events prior to the 10/26-11/19-2011 time frame.
*Intense headaches continue
*Sam is relearning his past

January 2012-
*Sam getting back to normal
*Long term memory issues remain but still at the 10/26-11/19-2011 reset date.
*headaches continue but are slowly getting better.

February 2012-
*Same as late January 2012-Sam is slowly recovering

[Emily]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

ETA 2/21/2012:
The headline of the article below seems to be wrong. This article gives the impression that the Nicholsons live in Corinth, not Le Roy.
http://www.wkbw.com/news/local/First...139054424.html

First Leroy Teen Who Reported Symptoms Speaks
By WKBW News
By Kendra Eaglin
February 9, 2012
[snip]
Nicholson talked about the day when her body first started to change. It was last May while she was pitching in a softball game. She felt sick, passed out and began having a seizure...

http://www.flutrackers.com/forum/sho...&postcount=117

Water in an adjacent dolomite quarry has very low level of TCE (median value of five micrograms per liter, which is NYS drinking water standard for TCE). School officials reported that crushed stone from the quarry was used at the school in a road construction project and for subsurface drainage at a playing field. Residual TCE that might be present in stone from the quarry would be reduced or eliminated through evaporation during stone crushing and handling operations.

http://www.foxnews.com/opinion/2012/...unted-by-tics/

[snip]
Enter Columbia-trained Dr. Rosario Trifiletti -- a child neurologist in New Jersey, and an expert in PANDAS which is also know as Pediatric Auto-immune Neuropsychiatric Disorder.

Trifiletti visited nine of the girls in Leroy, and is treating them now with simple anti-inflammatory drugs such as ibuprofen and antibiotics.

Trifiletti told me that he believes a chemical toxin in the environment around Leroy, known as TCE or trichloroethylene, may have predisposed these teens to PANDAS, which is then triggered by a bacterial infection such as strep. But, again, what important to note here is that the physician's treatment doesn’t depend on that belief.....

Read more: http://www.foxnews.com/opinion/2012/...#ixzz1lxVo9jGQ

The author who wrote that article is doubtful of the link to TCE, but I've wondered if the important TCE exposure was during fetal development. The EPA didn't get involved in limiting environmental exposures from the TCE spill in Le Roy until the late 1990's, I think. Also there was a local business regularly releasing TCE and other solvents into the air until at least 1997. (It's documented on a government web site.) So perhaps there were occupational exposures.

I wonder if at least some of the patients in the cluster might be sensitized to TCE, so a very low exposure from the fill used at the school set this in motion.

[Emily]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

There's a thoughtful new article written by a psychiatrist with ties to the Le Roy area. He discusses possible ramifications from a conversion disorder diagnosis.

http://psychcentral.com/blog/archive...skeptics-view/

?Hysteria? in LeRoy: A Skeptic?s View
By Ronald Pies, M.D.
I grew up in Batavia, N.Y., about ten miles down the road from the small town of LeRoy. I had just gone off to Cornell a few months before the big train derailment in December, 1970, that spilled cyanide crystals and about 30,000 gallons of the solvent called tricholoroethene onto the railroad bed.

I never imagined that 40 years later, as a psychiatrist, I?d be reading about this incident in connection with one of the most mysterious mass outbreaks of neurological symptoms in recent memory.
[snip]
Indeed, there are many difficulties with both the concept of conversion disorder and the secondary explanation of ?mass contagion.? When I was in residency, one of my revered teachers used to say, ?Beware of diagnosing hysteria. It?s usually the last diagnosis the patient will ever receive.? She meant that once a patient had been labeled with ?conversion disorder? or ?hysteria,? no doctor would ever again take the patient?s symptoms seriously. The patient could end up in the emergency room with crushing, substernal chest pain radiating to her jaw?classic symptoms of a heart attack?and still be labeled ?a hysteric!? ...

[Emily]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

http://stlouis.cbslocal.com/2012/02/...ocal-families/

NY Mystery Illness Strikes Chord With Local Families
Carol Daniel
February 8, 2012 3:26 PM
O?FALLON, Ill. (KMOX) - Two families in the Metro East can identify with the mysterious illness that has caused about a dozen teenage girls in New York to suddenly develop uncontrollable spasms...

[sharon sanders]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

hat tip Michael Coston -

Mystery US outbreak prompts further tests
Tourette?s-like disorder in New York school confounds experts.

Alison Motluk
20 February 2012

This week, officials with the LeRoy Central School District in northwestern New York state approved a plan for further environmental testing at the town?s high school, where 19 people ? 18 girls and one boy ? have developed a sudden-onset disorder with symptoms similar to the movement disorder Tourette?s syndrome. The outbreak has captured national attention and led experts to suggest an array of possible explanations ? none of which seem to quite work. With speculation running high, here is a look at the facts surrounding the outbreak

more...

http://www.nature.com/news/mystery-us-outbreak-prompts-further-tests-1.10052

[Anne]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

quote : There's a thoughtful new article written by a psychiatrist with ties to the Le Roy area. He discusses possible ramifications from a conversion disorder diagnosis.

Thank you Emily, very good paper.Ive seen your CDC map with more " tourette" near NYork.
here about more schizophrenia in big towns http://mindhacks.com/2012/02/16/a-journey-through-schizophrenia-science/
I was alerted by an increase in schizophrenia in large cities: something in the environment?
I can"t understand the pod cast.. ( speaking... ), perhaps interresting ?

[Emily]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

quote : There's a thoughtful new article written by a psychiatrist with ties to the Le Roy area. He discusses possible ramifications from a conversion disorder diagnosis.

Thank you Emily, very good paper.Ive seen your CDC map with more " tourette" near NYork.
here about more schizophrenia in big towns http://mindhacks.com/2012/02/16/a-jo...enia-science/I was alerted by an increase in schizophrenia in large cities: something in the environment?
I can"t understand the pod cast.. ( speaking... ), perhaps interresting ?

Anne,
That is very interesting about schizophrenia having such a strong link with urban living. I couldn't find the podcast, but here is a link to a study about prenatal lead exposure and schizophrenia.
http://www.sciencedirect.com/science...61813X11002087

I'm not sure if lead is a concern, but I was shocked when I saw that New York City is still using no. 6 "bunker oil" for heating.
http://theuptowner.org/2011/11/29/cl...-bigger-bills/ There seems a lot of possibilities for urban pollutants to affect neuro-development. (And I saw and smelled noxious black smoke like that coming out of a suburban fireplace chimney recently. I hate to think of pregnant women and small kids exposed to that, whatever was being burnt.)

I found an article about the Tourette cluster in Corinth, NY that mentions a boy there who got Tourette last year along with the two girls.
http://wnyt.com/article/stories/S2470566.shtml?cat=300
Mystery illness causes concern in Saratoga County and beyond
Posted at: 01/26/2012 6:43 PM | Updated at: 01/26/2012 6:46 PM
By: Dan Levy

The boy and his mother are interviewed here:
<iframe frameborder="0" scrolling="no" src="http://eplayer.clipsyndicate.com/embed/iframe?pl_id=17563&page_count=4&tags=default&windo ws=1&rel=3&aspect_ratio=16x9&show_title=0&pf_id=86 48&va_id=3220140&auto_next=0&auto_start=0&volume=8 " width="425" height="330"></iframe>

And here is a recent follow-up on one of the girls in Corinth:
http://saratogian.com/articles/2012/...default#photo1
Local parents want answers: Two Corinth students? Tourette-like symptoms similar to those experienced by teens in Le Roy
Published: Sunday, February 12, 2012

[Anne]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

http://mindhacks.com/2012/02/16/a-journey-through-schizophrenia-science/

Robin Murray and schizophrenia : http://www.bbc.co.uk/programmes/b01bwmvt

[Emily]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

http://mindhacks.com/2012/02/16/a-jo...renia-science/

Robin Murray and schizophrenia : http://www.bbc.co.uk/programmes/b01bwmvt

Thanks, Anne. I enjoyed listening to Dr. Murray's interview. He said that finally psychiatry is beginning to open to the idea that many illnesses are caused by an interaction between genetic and environmental factors. For a long time it was strictly a battle between the two approaches. Also environmental influences can be social or physical in origin.

I found another interview with him from 2009 that has a written transcript available:
http://www.gresham.ac.uk/lectures-an...al-people-sane

Also found another case of a movement disorder that started a few weeks ago in a 23-yr-old woman in Swissvale, PA, (near Pittsburgh.) She just found out about the Le Roy cases and wonders if there is an environmental link. Her illness was so bad that she was hospitalized for 4 days.
She comments after the article in a response to a question there that she NEVER had the H1N1 flu vaccine and her last Gardasil shot was over 5 yrs ago.
She did work as a hair stylist which is a profession that can have some significant chemical exposures, so that might fit in with the toxin/subclinical infection hypothesis.
There is a video at the link, and her symptoms are still preventing her from working.
http://www.wpxi.com/news/news/local/...JGwd/#comments

Updated: 5:59 p.m. Friday, Feb. 17, 2012 | Posted: 4:09 p.m. Friday, Feb. 17, 2012
Swissvale woman suffering from mysterious illness

[Anne]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

Thank you for the transcript, Emily.. I couldn't hear ( understand ) the interview...
with schizophrenia : there is " toxoplasma" theory too..

[Anne]

Re: Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

Thank you for the transcript, Emily.. I couldn't hear ( understand ) the interview...
with schizophrenia : there is " toxoplasma" theory too..