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Saturday, February 4, 2012

New York’s Le Roy students, public still seek answers in mystery illness

The illness afflicting more than a dozen students at Le Roy Junior-Senior High School in Le Roy, N.Y., with violent, involuntary twitches and gestures has attracted national attention, not to mention the suspicions of notable environmentalists such as Erin Brockovich and Lois Gibbs.

Distressed young girls and their parents have appealed for help while headlines around the globe tell about a “mystery illness” in upstate New York that “baffles doctors.”

But the many physicians who have consulted, examined, tested and diagnosed these students – rendering first, second and third opinions – don’t think the disease is a mystery at all. And they aren’t baffled.

They’ve come to the same conclusion: These students suffer from a real physical condition that has an underlying psychological cause. Individually, they suffer from conversion disorder, and collectively, they suffer from mass psychogenic illness, also commonly referred to as mass hysteria.

No amount of media coverage or speculation these past few weeks has changed that diagnosis. Even the speculating psychologists and physician contributors on national TV do not dispute the findings.

“People do not want to accept that,” said Dr. Lazlo Mechtler, one of two neurologists at Dent Neurologic Institute who have evaluated 12 of the 15 cases that have come to light so far. “They live a conspiracy life in a bioterrorist world.”

There are reasons. No case of mass hysteria in recent history has looked as strange or lasted as long as this one. The idea that such symptoms could erupt from an otherwise healthy person seems unfathomable.

“I want an answer, a straight answer,” demanded a cheerleader and art student who appeared on the Today Show two weeks ago and whose violent tics have made her a poster child for the disturbing affliction.

So how did health professionals reach their diagnosis?

Why do so many people continue to distrust it?

And why do some believe that something toxic could still be at the root of the problem?

The start

It started with a few in the fall. One by one, within the first two months of the school year, girls attending the 600-student junior-senior high school started exhibiting involuntary movements and twitches. That led to doctors’ visits and hospitalizations.

Eight were affected by the end of October, and 12 by the time the Department of Health completed its investigation in January. Some, but not all, of the girls were friends.

Eventually, school health personnel realized that they had a statistically significant number of similar cases and reached out to nurses at the Genesee County Health Department, said county Public Health Director David Whitcroft. He called for reinforcements from the state Department of Health.

Over the course of the next three months, state health officials gathered patient diagnoses from treating physicians. They read research and consulted with the state Office of Mental Health, the Centers for Disease Control and Prevention, and experts from Columbia University.

The school district, meanwhile, commissioned environmental tests (indoor air quality investigation and mold report) at the school to determine if toxic exposure to things such as carbon monoxide or dioxide levels, mold, bacteria, or volatile organic compounds could be responsible. All results were negative.

Many of the girls who initially were diagnosed by their own physicians were referred to pediatric neurologist Dr. Jennifer McVige, and later her supervising physician, Dr. Mechtler, vice president at Dent Neurologic Institute, a major neuroscience center headquartered in Amherst, N.Y., that treats more than 140,000 patients a year and has an office in Batavia, N.Y.

Dent neurologists saw 10 of the 12 initial patients and returned with the same diagnosis the patients’ initial doctors reached: conversion disorder, in which the brain has “converted” severe mental stress into real physical symptoms.

Since then, the practice has seen two of the three newest cases, one of whom is a boy.

“Conversion disorder is very common,” Mechtler said. “Neurologists see it regularly. I probably see it every two or three days.”

Because so many girls were afflicted, Dent ran an unusually large battery of tests on each affected student, Mechtler said. All plausible physical explanations for their condition were ruled out, he said.

That’s when the term “mass psychogenic illness” was used to describe the phenomenon doctors say has been at work in Le Roy.

The diagnosis

In many ways, what is happening at Le Roy Junior-Senior High School carries the classic signs of a mass psychogenic illness, a group disorder that has been documented for centuries and primarily affects women.

One such case erupted at Warren County High School in Tennessee, recalled Dr. Timothy F. Jones, the state epidemiologist with Tennessee Department of Health. It started in November 1998, when one teacher started feeling sick, nauseous and short of breath after smelling a “gasoline-like” odor.

Soon, students in her classroom started feeling sick, and eventually 100 students and staff – mostly female – experienced similar symptoms. The outbreak occurred twice, and each time the school was evacuated and closed.

“We did an unbelievable amount of environmental testing,” said Jones, who has written and lectured on the phenomenon. “We climbed into caves in the ground, we flew helicopters overhead, drilled holes in the walls, did tons of testing on the kids – all negative.”

What’s happening in Le Roy carries similar hallmarks, he said.

Mechtler pointed out that this type of outbreak is more common in close-knit communities, particularly schools.

“In the last 30 years, 60 percent of MPI cases have occurred in schools with young women in rural areas,” he said.

Mechtler added that he has not seen every case from Le Roy and that it’s possible an initial “index” case – in which a student suffers from a genuine motor disorder – had a cascading effect on other students.

The rejection

Earlier this month, the Le Roy Central School District held a meeting attended by more than 200 concerned community members. The school superintendent and representatives from the state Office of Mental Health told people, essentially, that the high school was safe without divulging an actual diagnosis.

The meeting ran nearly three hours, with some speakers expressing open skepticism that the district and Health Department had looked into every possible cause.

In the ensuing weeks, more parents became openly frustrated by their children’s diagnoses and spoke out against the idea that their children had severe physical conditions requiring psychological or psychiatric treatment.

Unlike other modern-day incidents of mass hysteria, where symptoms such as headaches and nausea were common and subsided quickly, the involuntary twitches among the Le Roy students appeared unusually bizarre. In some patients, the twitches have lasted for weeks and months, keeping kids out of school.

One parent, Jim DuPont, has gone on to become a spokesman for a group of parents crusading for an alternative explanation, though his daughter continues to be treated at Dent and has shown marked improvement. He declined an interview with The Buffalo News.

These parents question a “diagnosis of exclusion,” saying that just because physicians have been unable to find a physical cause doesn’t mean there isn’t one.

A number of them are having their children evaluated this weekend by Dr. Rosario Trifiletti, a New Jersey-based child neurologist in private practice, and the only physician to have publicly disputed the conversion disorder diagnosis as “garbage” on WGRZ-TV.

Trifiletti said the students could be suffering from PANDAS – pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections – a rare and controversial pediatric diagnosis in cases where strep infections or other germs are believed to suddenly trigger tic-like symptoms.

Trifiletti did not return calls from the News.

But Mechtler expressed outrage that a nontreating physician and self-described PANDAS specialist could so easily dismiss the current diagnosis. He called Trifiletti “a zealot.”

The defense

There was a time when the Dent physicians were not so vocal.

Mechtler and McVige initially were reluctant to state or defend their diagnosis, worried that public attention would exacerbate symptoms. But after the media frenzy began and some families refused to return for treatment, Mechtler changed his mind.

“I have to defend my patients by offering sanity,” Mechtler said.

He also wanted to defend pediatric neurologist McVige, a relatively young, new physician to the Dent practice who has spent “countless emotional hours” treating and counseling the Le Roy patients.

“It’s difficult to see a young physician get this much exposure and criticism – especially when she’s right,” he said. “She’s really upset that her patients aren’t coming back, that they’re being railroaded.”

He added that parent Jim DuPont has been personally invited to come to the Dent offices with his daughter but has refused.

Thera Sanchez and her mother have made and canceled three appointments with Dent.

Mechtler and McVige also noted that a number of patients have improved since they began treatment, and two are now fine.

The X factor

A growing number of environmental activists and groups have questioned whether school and state health officials have done tests thorough enough to rule out all possible toxic exposure at the school.

Though the school commissioned two sets of environmental tests, some criticize them as superficial because the Genesee Valley Educational Partnership relied on some “visual inspections” and did not use “destructive methods” to collect samples.

Nor did the investigators or state health officials conduct indoor water tests, because water to the building is supplied by the Monroe County Water Authority. That public water system serves the entire region and is regularly tested, so the Health Department decided further testing was unnecessary.

The Rochester Democrat and Chronicle also reported that some are concerned that toxins may be coming from five natural gas wells, owned by the Le Roy School District, that ring the junior-senior high school building.

Finally, environmental activist Erin Brockovich has questioned whether students have been exposed to contaminants from the train derailment that occurred within a few miles of the school in December 1970. That derailment spilled cyanide crystals and leaked carbon tetrachloride.

These theories do not explain, however, how it is that only girls – with one exception – have come down with Tourette’s-like symptoms.

“An environmental exposure would affect many people,” said Health Department spokesman Jeffrey Hammond.

More gender-specific theories, such as the suggestion that the Gardisil vaccine used to prevent cervical cancer may be responsible, also have been dismissed. The majority of the girls never received it, Hammond said.

Jones, the Tennessee public health doctor, said he’s not surprised that the demand for environmental testing continues. When the Warren County High School incident occurred, multiple tests were done, but some people still weren’t satisfied.

“We got letters from around the world of people talking about their favorite chemical – toxicologists, etc. – saying they’ve spent their whole life studying XYZ, and you didn’t test for that,” he recalled.

“I am not aware of any previously identified environmental toxin that would explain a cluster of symptoms as diverse as these,” he said.

The close

If mass hysteria and conversion disorder are the true causes of the Le Roy outbreak, many wonder when this story will end.

Given the explosion of national media interest and environmental scrutiny over the past two weeks, perhaps not soon. Health professionals who have studied mass psychogenic illness say heightened attention only worsens symptoms.

Mechtler has encouraged families still questioning their diagnoses to seek an opinion from Dr. Jonathan Mink, chief of child neurology at Golisano Children’s Hospital in Rochester. Mink is a childhood movement disorder specialist who has been extensively published and who has co-authored a book on the subject.

Meanwhile, Dr. Mark Hallett, senior investigator with the National Institute of Neurological Disorders and Stroke in Bethesda, Md., informed Dent that the Le Roy families interested in getting another opinion are welcome to visit the institute.

Travel expenses would be covered, Hallett said, and participating study subjects from Le Roy might improve the medical community’s understanding of a phenomenon that is poorly understood.

“I hope we can learn something that will help not only them, but other people as well,” he said.

Sandra Tan can be contacted at stan@buffnews.com.