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

Thanks for taking the time to put together the update, Emily. :tiphat:

You are very welcome, Al. I needed to organize this material in my own mind, anyway.

I believe Digger has reported that there is a previously named, unrelated, illness called "LeRoy Syndrome", so Dr. Trifiletti's choice of nomenclature may be poor.

I'm sure this is just a working name for the syndrome and he'll change it if need be. I agree it might be a good idea if this advances. (I have wondered about pH1N1 playing a role in this if something truly new is emerging. It couldn't be the only factor, of course, but it is a new infectious agent. I found an interview with Dr. T that I'll post elsewhere and he said that there is some evidence that influenza can trigger PANDAS-like illness. These complexities are probably why the name PANDAS will be changed to PANS soon.)

The disease Digger might have found could be this one:
Stoll-Brodie-Fiessinger-Leroy Syndrome (Reiter?s Syndrome)
http://www.benthamscience.com/crr/sample/crr1-1/D0011R.pdf

The article says the illness is still called Reiter's to a large extent in English speaking countries. The reasons for changing the name are discussed in the article.

I found an interesting article here written by a psychologist who lives in Le Roy. He touches upon the tic outbreak and places it within the broader milieu of the town, whose greatest challenges are from the same broad economic and social forces weighing on many smaller communities in the country today.

http://thedailynewsonline.com/opinion/editorials/article_7bf35392-5f72-11e1-aef4-001871e3ce6c.html

Joseph Langen: Le Roy, New York: A sleeping phoenix
Posted: Saturday, February 25, 2012 8:30 am | Updated: 12:35 am, Sat Feb 25, 2012.
By Dr. Joseph Langen

Too much sanity may be madness and the maddest of all, to see life as it is and not as it should be.

? Miguel de Cervantes Saavedra...

 

[Jonesie]

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

This chemical was my first thought.

But it could very well be a different chemical causing similar symptoms:

http://www.pan-uk.org/pestnews/Actives/chlorpyr.htm

 

[Pathfinder]

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

Teen's mystery symptoms linked to Lyme disease

By Cathleen F. Crowley

Published 06:02 p.m., Thursday, March 8, 2012 ​

Doctors diagnosed Lori Brownell with Tourette's Syndrome, conversion disorder, anxiety and obsessive compulsive disorder, but she didn't believe any of them. Especially the doctors who told her it was in her head.

The diagnosis she received on Tuesday, however, feels right: Lyme disease.​

Read more: http://www.timesunion.com/local/art...ked-to-Lyme-disease-3392738.php#ixzz1oaNX886X​

​

 

[Laidback Al]

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

. . . The diagnosis she received on Tuesday, however, feels right: Lyme disease. . .

I don't think that multiple etiologies can be ruled out. Perhaps Emily or Alert or other FluTrackers members who are closely following this outbreak will comment.

 

[alert]

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

What is notable about Lori and her friend is that they do not live in Le Roy, but in Corinth. It is very possible that the two cases in Corinth might have had nothing to do with the outbreak in Le Roy, especailly in light of the lack of any strong connections between the cases. Other reports in this thread indicate that Lori's friend, Alycia, may have actually been diagnosed with Tourette's as well.

Lyne disease as an etiology in at least some of the cases would also explain the preponderance of cases having outdoor exposures such as softball, cheerleading, and soccer, and would also explain why the entire teams did not get sick (only those bitten by infected ticks would).

This really does look a lot to me like that outbreak in China linked to about a hundred posts ago that was apparently due to about 6 different causes. We may very well be seeing the same thing here.

 

[Emily]

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

Lori tested positive for Ehrlichia, too.

They took her to a doctor in New Jersey to be tested and the results showed that Lori has Lyme and Ehrlichia, another tick-borne infection, said Tosha Brownell, Lori's mom.

Read more: http://www.timesunion.com/local/article/A-tick-behind-all-of-the-tics-3392738.php#ixzz1ocJkAVVX

It's a good thing she's finally getting treatment. Here's a fatal case in an undiagnosed 60-yr-old woman.

http://www.springerlink.com/content/2620p232l8428424/


Maryland Department of Health:
Laboratory Diagnosis of Tick-borne Diseases
"Ticks can harbor more than one disease-causing agent and diagnosis can be difficult"

 

[alert]

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

Here's what remains unclear at this point. At least 40-50% of the 22 cases have been given various diagnoses (including Lyme, Tourette's, PANDAS, and conversion disorder) and seem to be recovering. What is unclear is whether the remaining cases simply have not been diagnosed (and will fall into the existing categories), or whether there is a significant, still undiagnosed illness out there.

I can't help but notice that many of the diagnosed cases are in the "periphery" of the cluster; they may not attend the same school as the others (like Lori and Alycia), they may be an adult (like the 36-year-old woman), etc. It is conceivable that the main cluster (teenage girls in LeRoy who attend one specific school) could remain undiagnosed.

Only more time will tell which scenario we are in.

 

[corinthdad]

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

I'm the father of Alycia in Corinth NY . I have tried to post here for over a month now but it wouldn't let me. It seems you have still done a better job than most in getting the facts straight . I did bring Lori & Alycia of Corinth to see Dr T . I have posted a little on ACN forums under corinthdad.

 

[Laidback Al]

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

I'm the father of Alycia in Corinth NY. I have tried to post here for over a month now but it wouldn't let me. It seems you have still done a better job than most in getting the facts straight. I did bring Lori & Alycia of Corinth to see Dr T. I have posted a little on ACN forums under corinthdad.

Welcome to FluTrackers and thanks for your positive comments. We are a nonprofit organization, we do not sell anything or accept any advertising, we are not medical professionals and we do not offer medical advice. Our primary mission is to provide accurate and timely information about disease outbreaks where ever they may occur.

We wish the best for your daughter, her friend Lori, and all the other individuals from Leroy and other locations that are suffering with similar symptoms.

 

[sharon sanders]

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

I'm the father of Alycia in Corinth NY . I have tried to post here for over a month now but it wouldn't let me. It seems you have still done a better job than most in getting the facts straight . I did bring Lori & Alycia of Corinth to see Dr T . I have posted a little on ACN forums under corinthdad.

All the best to your family and all of the persons affected by these maladies.

 

[Emily]

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

I'm the father of Alycia in Corinth NY . I have tried to post here for over a month now but it wouldn't let me. It seems you have still done a better job than most in getting the facts straight . I did bring Lori & Alycia of Corinth to see Dr T . I have posted a little on ACN forums under corinthdad.

Welcome from me, too, corinthdad. I think I saw you and one of the Le Roy moms posting at ACN a few days ago.

http://www.latitudes.org/forums/index.php?showtopic=16711&st=0

I saw another interview with Lori from Corinth posted at ACN forums. (This article only mentions Lyme, but I'm glad that the other article also mentioned ehrlichiosis so people learn about that one. This article in a veterinary publication discusses co-infections in humans, too.)

I'm hoping everyone involved has their health fully restored, whatever the cause or causes of these illnesses.

This chemical was my first thought.

But it could very well be a different chemical causing similar symptoms:

http://www.pan-uk.org/pestnews/Actives/chlorpyr.htm

Jonesie, I agree the possibility of pesticide exposure is something to consider. The thread from the ACN forums I linked to above has some discussion about that possibility. (This discussion is about possible agricultural drift, not from school use.)

 

[Emily]

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

http://www.democratandchronicle.com/article/20120316/NEWS021604/303120064/Steve-Orr

A lesson in the old FOIL request string-along
1:08 AM, Mar. 16, 2012
STEVE ORR
Staff writer
[snip]
Interestingly, I?ve heard from three environmental-health groups that they are having a similar experience with the Health Department. The groups filed a FOIL in late January for material related to the state?s investigation into the cluster of unusual neurological symptoms in Le Roy, Genesee County. They were promised a response in 20 days, and then the Health Department asked for 10 more days. That deadline came and went last week, and, just as they filed an appeal, the department sent another letter asking for nearly a month more.

I feel their pain.

The author has been trying to get information from New York State about their testing for cyanobacteria. I think his interest in that issue predated the Le Roy cluster, but back in post #74, I posted this link:
Sporadic amyotrophic lateral sclerosis as an infectious disease: A possible role of cyanobacteria?

Not that this is ALS, but I was interested that cyanobacteria is being considered as a potential infectious link in neurological illness clusters.

 

[Pathfinder]

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

New study finds no toxins in Le Roy

<!-- item.type --><!-- areastring -->By Sandra Tan
NEWS STAFF REPORTER

Updated: June 14, 2012, 10:23 AM

...
"The air, soil and surface water sampling conducted at the [Junior High/Senior High] site did not identify chemicals at concentrations which could be considered to have health impacts to students, teachers, administrative staff or the public occupying the site," the report said.

Superintendent Kim Cox called the findings of the $70,000 study "excellent news" and stated in an open letter to the community Wednesday that she hopes the findings will allow the district to once again refocus on educating students.
...
The majority of the 18 afflicted Le Roy students were diagnosed individually as suffering from conversion disorder and, collectively, from mass psychogenic illness, also commonly referred to as mass hysteria. Doctors said they suffered physical symptoms rooted in underlying psychological stress.

Over the fall and winter months, the diagnosis was criticized by some worried and angry parents, environmental activists such as Erin Brockovich, and some media. Many questioned whether the girls' illnesses were caused by natural gas wells, toxic waste from a long-ago train derailment, autoimmune disorders or vaccines.

But, with some exceptions, most neurologists have been steadfast in their support of the conversion disorder diagnosis. In April, this case was presented to members of the American Academy of Neurology.
...
Mechtler said the students' conditions improved just as the national media moved on to other stories.

"These patients have improved after we requested the media step back from sensationalizing the disorder and putting them on TV," Mechtler said.

Five of the 11 student cases from Le Roy that Dent has seen are fully recovered, Mechtler said. Another five continue to be seen for neurological conditions unrelated to tics, such as headaches and migraines.

"One still has some symptoms but is much better," he said. "I'd say 80 percent better."
...

Full text:
http://www.buffalonews.com/topics/mysterious-illnesses-in-le-roy/article901881.ece

 

[Emily]

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


Le Roy district announces 'no health impact' found in air, water and soil testing

Submitted by Howard Owens on June 13, 2012 - 6:35pm

[snip]
Leader did recommend the stack of the school's boiler be made taller to eliminate noxious odors that were coming into the school.

"While not considered a health issue, the odor was an annoyance and so we proceeded with this project in March," Cox said. "Additional work will be done this summer so that this issue is effectively alleviated."...

Report: N.Y. school with sick teens not toxic

By Steve Orr, Rochester (N.Y.) Democrat and Chronicle
Updated 2d ago
[snip]
Arsenic was found in soil near a school-owned natural gas well in a concentration slightly above New York state cleanup guidelines. The gas well, which is behind a chain-link fence, is one where a tank that holds brine from the well had previously overflowed....

 

[Treyfish]

Mass Hysteria Confirmed in New York School

Mass Hysteria Confirmed in New York School

:tiphat:A report on the event that happened earlier this year..

"A bizarre illness affecting nearly 20 students at a Western New York Junior-Senior High school now has an official diagnosis: mass hysteria.

The students, almost all of them girls, and mostly friends, began experiencing involuntary jerks and tics. Sometimes their limbs, neck or face would suddenly spasm; other times they would twitch, grunt, or shout. It was strange and troubling behavior, made all the more scary because it had no clear cause."

...The Buffalo News reported, "A second study has again found that the twitches, involuntary sounds and seizures that beset a group of Le Roy students and attracted international media attention earlier this year had no environmental cause....
:tiphat:
[link to news.discovery.com]

 

[Emily]

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

Is A Strep Infection Disorder Behind The LeRoy Mystery Illness?

Jun 17, 2012

It seems to fit all the symptoms.

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

And the majority of the patients.

?It?s a condition that typically afflicts young girls.?

Dr. Vince Markowski has a theory; one that could solve a medical mystery.

Markowski is 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 often occurs after an individual has been infected with strep. The tics and involuntary movements can occur months after the infection has cleared,? said Markowski, a biological psychologist.

Closely associated with Pediatric Autoimmune Neuropsychiatric Disorders, or PANDAS, Sydenham?s Chorea affects an important area in the brain; one that controls voluntary movement.

?When they respond to the strep bacteria, the antibodies that they form also cross-react and they attack the cells of the basal ganglia.?

When this part of the brain becomes inflamed, loss of motor skills, headaches, and fatigue follows. In most cases, these symptoms clear up in months but they can persist for years.

?The grimaces you see with some of the students that have appeared in the media. Some of the involuntary movement?s in the head and in the arms.?

Markowski says the original diagnosis of conversion disorder, converting anxiety into physical symptoms, is certainly a possibility, but right now he says it?s too early to rule anything out...

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[Emily]

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

See post 133 for history on this.

http://www.flutrackers.com/forum/showpost.php?p=443735&postcount=133

http://www.wpxi.com/news/news/local/doctors-diagnose-swissvale-womans-mysterious-illne/nSZMB/

Updated: 7:13 p.m. Wednesday, Oct. 10, 2012 | Posted: 3:57 p.m. Wednesday, Oct. 10, 2012
Doctors diagnose Swissvale woman?s mysterious illness
[snip]
Nikki Elko was experiencing strange symptoms about the same time a group of teenage girls in New York was experiencing uncontrollable tics.
[snip]
Elko said Wednesday that the shaking practically disappeared after she was diagnosed with PANDAS, which stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
[snip]
"There is a small number of doctors that believe in it (PANDAS) and an even smaller number that believe that adults can have it and will treat it," Elko said.

Elko said she wants to make others aware of the disorder because it's so rare and hard to get diagnosed.

"If the patients are younger, they can't speak up for themselves," Elko said.