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

[Shiloh]

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

Source: http://yourlife.usatoday.com/health/...ter/53272518/1

Doctor: Some students with mystery illness 'all better'
By Melissa Holmes, WGRZ-TV, Buffalo, N.Y.
Updated 4h 8m ago


LeROY, N.Y. ? As the spotlight on more than a dozen teenage girls with uncontrollable tics starts to fade, that may be leading to a steady improvement in the health of some patients, their doctor said.

For weeks, Dr. Jennifer McVige of Dent Neurologic Institute in Amherst, N.Y., has seen 15 cases, a dozen of them students, associated with the strange illness in this town of about 7,650 people 30 miles southwest of Rochester, N.Y. As many as 18 may have been affected. Most are teen girls.

"There are two of the girls that are all better, and there are three more that are just there," McVige said...

[Emily]

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

http://www.wgrz.com/rss/article/1572...y-Test-Results

Downstate Doctor Releases LeRoy Test Results
5:20 PM, Feb 24, 2012
[snip]
Below is the full press release from Dr. Trifiletti regarding the results of his lab testing:
"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."

[Emily]

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

It was suggested that this might be a good time for a brief summary of the status of the Le Roy outbreak. Here is an attempt:

Current case count and sex of patients in Le Roy based on the latest reference I could find dated February 8:

There are now 18 known cases of Le Roy students, as well as two adults, who have come down with illnesses involving involuntary twitches, movements and gestures, according to the Department of Health. Three have come to the attention of the Health Department in just the past few days.

All but one of the students are female.

(One of the adults has spoken to the media and is a female. I don't know what the sex is of the other adult.)

Time frame of identified illness in Le Roy:
1st cast was reported in September 2011. Last 3 cases were reported in early February 2012.

Diagnosis by treating doctors:
As of 3 days ago, the Dent Neurologic Institute in Amherst, N.Y., has seen 15 cases and diagnosed all of these cases with conversion disorder. (They think it is possible that there were one or two index cases with physical neurological disorders in the group of patients not seen at the clinic.)

Dr. Rosario Trifiletti, another pediatric neurologist who specializes in neuroimmune disorders, released a statement on Feb. 24 reporting that he had seen 9 Le Roy patients. His findings were:

• A common strep bacteria in five of the nine patients
• An agent that commonly causes a mild pneumonia-like illness in eight of the nine patients
• Two patients met CDC diagnostic criteria for Lyme disease
• Patients are responding to treatment
• A PANDAS-like illness is a very likely medical diagnosis

Dr. Trifiletti released another update after seeing the two girls with similar symptoms in Corinth, a New York town about 250 miles from Le Roy. The patients are both high school age females. One became ill in May 2011 and the other in August of 2011:

P.A.N.D.A.S. - P.I.T.A.N.D. (P.A.N.S.) Awareness Ribbon & Research Support
Update on LeRoy cases from Dr. Trifiletti:
"UPDATE ON TOURETTE-LIKE ILLNESS CLUSTERS - the Leroy Syndrome

I had the opportunity to examine both girls from Corinth, NY area today. This makes 11 girls examined in all. I spent fours hours with the two families. Although these families traveled through the Leroy area over the past summer, I do not believe this has any bearing on this case. After taking their histories and examining them I am more convinced than ever that they have the same disorder as the Leroy girls and that this is definitely not a conversion disorder. It is a new clinical syndrome.

I think it's best to call this cluster the "Leroy Syndrome" as it does not meet clinical criteria for Tourette Syndrome, PANDAS or PANS. This is a matter of semantics, what doctors sometimes call "nosology"

The "Leroy Syndrome" has the following features:

1. Hyperacute onset - the cardinal feature
2. Exclusively, or largely female, post-pubertal onset
3. Ballistic tics, upper body, frequent unilateral predominance, frequent nuchal involvement with echopractic features
4. Occasional vocal tics, typically synchronous with ballistic movements
5. Occasional features: migraine headache, autonomic dysfunction (POTS and fainting)
6. Minimal or no obsessive-compulsive features or anxiety
7. Minimal or no cognitive decline
8. Minimal or no choreiform signs

The Leroy Syndrome is a PANDAS variant. All cases examined thus far have a GABHS or mycoplasma trigger. All cases are responsive to anti-inflammatory agents. All cases are treatable with appropriate antibiotics.

Dr. T"

Status of environmental testing in Le Roy:
I'll try to post more details on this later here, but at this point testing done at the Le Roy school that the original cluster of students attend has not shown any health concerns. The public water supply to the school and town tested without showing any health concerns. (I think more testing is being done by the school and the Erin Brocovitch team in the area.)
ETA 4/20/2012:
New York State Health Department has a link to their released information on the Le Roy illness cluster here:
New York State Health Department Issues First Summary Report on Le Roy School Case
On April 12, The EPA released the results of ground water sampling done in December 2011 at the Lehigh Valley Railroad Derailment site.
EPA website page with test data.


Cases similar to the Le Roy Syndrome:
The two high school aged girls mentioned above from Corinth, New York. (One case onset May 2011 and one case onset August 2011.)

One of our members posted about 2 high school students, (one male and one female), in Indiana with some overlap of symptoms and timing. Here are some pertinent posts:

http://www.flutrackers.com/forum/showpost.php?p=430354&postcount=5

http://www.flutrackers.com/forum/showpost.php?p=437286&postcount=38

http://www.flutrackers.com/forum/showpost.php?p=441019&postcount=125

On February 17th, a 23-yr-old woman in Swissvale, PA reported an illness similar to the Le Roy Syndrome. She reported sudden onset of the illness occurred a few week prior.

[alert]

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

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.

[Laidback Al]

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.

[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.

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/sa...1-1/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/opinio...871e3ce6c.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/arti...#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/arti...#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.