CORINTH, New York -- Lori Brownell’s teammates nicknamed her the Beast. She threw herself into every play last year on the girls’ softball team at Corinth High School, north of Albany. A star pitcher and all-around player, she dove for the ball and slid into base with bruising abandon – and has the jammed fingers, scrapes, and concussions to prove it.
Alycia Nicholson is no shrinking violet, either. She is an undefeated wrestler on the boys’ junior varsity wrestling team, and, like Lori, an ace softball pitcher. This past spring, after she moved up to the varsity, she hurled a two-hitter with eight strikeouts for one victory, and slammed a solo home run in another.
It is odd, then, that these two hardy teens were the only two students felled at the high school last year by a mystery illness that included fainting spells, tics, severe fatigue, joint pain, breathing problems, seizures, rashes, and other serious signs and symptoms.
And it’s even odder that both were subjected to claims in recent months that it was all, in effect, in their heads – that they suffered not from any physical illness but from a Freudian diagnosis of “conversion disorder,” in which some past trauma or emotional upheaval got converted unconsciously into physical symptoms. When this happens to more than one person in the same setting, it is called mass hysteria, or, to use the modern and less judgmental-sounding term, a mass psychogenic event.
Historically, hysteria has been associated with anxious, attention-seeking people, usually women. Across the state, a similar cluster of symptoms among a group of high-schoolers was dubbed, “cheerleader hysteria.” As a New York Times column by Caitlin Flanagan put it: “Most parents of adolescent girls will never have to contend with episodes of hysteria of the kind experienced by the cheerleaders. But anyone with a teenage daughter can attest that this is a time of emotional extremes and high drama, of girls who are one moment affectionate youngsters and the next screaming banshees.” (See our article, The Crazy History of Conversion Disorder)
The girls, and their families, don’t buy it. As Alycia, an attractive, self-contained young woman, said simply when we visited her home outside Corinth earlier this year: “Why would anyone do that to herself?”
It’s a great question, and one with no good answer. The likeliest explanation in both cases remains real illness, triggered by something in the environment, or by an infection, or by some unusual combination. But unwarranted medical and media skepticism, based on 19th-century psychiatric speculation, continues to stand in the way of understanding what really happened. While Alycia, now a junior, has returned to school and sports and has only minor residual problems, Lori – an outgoing, appealing and mature senior, eager to do volunteer work for the disabled -- cannot attend class or tolerate noisy or crowded situations, and continues to have disabling verbal and physical tics. A recent video captured her on a rare trip out, to Walmart, with a friend pushing her wheelchair.
Both girls were afflicted in 2011, Alycia near the end of the school year that May, when she collapsed, passed out, and went into convulsions on the pitcher’s mound at a junior varsity home game. Lori, the star varsity pitcher that year, passed out that August at a school dance, then again in October, with recurrent dizziness at school in between, followed by multiple symptoms that worsened dramatically.
Lori, used to being knocked down but not out, tried to carry on as usual, but a friend described the difficulties: “When she started to come back to school, she passed out almost every day. It killed me to see everyone just staring at her as the nurse came running down the hallway.”
The cases gained national attention early this year after a similar but larger cluster of about 18 girls developed tic disorders at LeRoy Junior-Senior High School near Rochester, 250 miles west of Corinth. In LeRoy, the state health department endorsed the diagnosis of conversion disorder, and school officials said there was no environmental or infectious cause for the illness. For that reason, health experts have declined even to investigate the Corinth cases, saying that by definition they could have nothing in common with LeRoy.
Although we have drawn no conclusions, there are several plausible physical suspects in Corinth – from infections to pesticides on playing fields – that should have been investigated more intensively and ruled out more persuasively before exotic mental diagnoses were even considered. Since the start of the school year two new tic cases have been reported in LeRoy, along with a third case that suddenly worsened. This, and rumblings of more cases in both locations and clusters in other states, suggest such factors could be a continuing threat. For that reason if no other, a close look at the Corinth cases makes sense.
When we visited, we found two strong, unified families facing their daughters’ mysterious illness with caring and determination. But when a reporter for The New York Times, Susan Dominus, visited the Nicholsons -- Randy Nicholson is an independent construction contractor and his wife, Heidi, is a stay-at-home mom to four kids -- it did not take her long to decide on a diagnosis. As she wrote on her Times blog:
“I drove to Corinth first and interviewed one of the two young women [Alycia] who were showing symptoms there. I’m not a neurologist or a psychiatrist, but it seemed likely to me after talking to her that anxiety was an issue, and that her symptoms seemed to get worse in situations when there was a lot of attention and concern focused on her and the other girl. I did not think that she was faking it, but that there was something psychological at play. It was not what I had expected, to be honest.”
The idea that a newspaper reporter would offer such a diagnosis after a brief visit, and make it public, upset Alycia and outraged her parents. So did the family’s subsequent visit to California to appear on The Doctors, a TV show. Randy Nicholson said the family participated on the understanding that the doctors would evaluate Alycia for PANDAS, a neurological condition that has been suggested as a cause of many of the LeRoy cases, but “when we arrived, the testing was changed to the most basic and general tests which would undoubtedly turn up nothing.”
The doctors then told her, on national TV, “You’ll be fine in no time.” Translation: Tut, tut little girl. Just calm down and you’ll get better. It’s all in your head. Says Randy: “That’s not it. There’s a lot more going on.”
“It’s like being in a horror movie,” Heidi Nicholson said of the repeated failure to find anything amiss with their daughter. “At Albany Medical Center, they told us they didn’t see anything wrong, so there was no further need to investigate it. It made us so angry because we couldn’t get anywhere, and she was sick all the time.”
While Alycia had symptoms leading up to her collapse last year that may or may not have heralded a problem, the acute onset was dramatic, witnessed by her father at a home game on the JV softball field. “It was the first inning and she was on the mound,” Randy said. “She had told the coach she was tired, fatigued, sore. Her stomach had been upset a few days before.”
After the first few pitches, “I saw her face change and turn black and she was sweating abnormally. She buckled and hit the ground. She was out.” After a brief but terrifying few moments, “she came to. Different muscles were convulsing and twitching, and she had difficulty breathing.” Unable to walk or talk coherently, she was rushed to a medical center. At first, everyone assumed a random seizure, possibly triggered by heat stroke.
But a day later, at home, “she seized and didn’t come around, fell into a real deep sleep, and we couldn’t get her out of it.” That was the first of many such episodes and bizarre symptoms, a summer spent on the couch, deeply fatigued, between urgent visits to the hospital.
In retrospect, Lori, like Alycia, may have had minor early symptoms before her dramatic collapse at the school dance in August 2011. “Starting at the beginning of 2011, she started complaining of not feeling well,” according to her mother, who is an applications analyst at a local hospital. Her husband, Jeff, is a mechanic at a tech firm. Lori, one of four children, “was very tired all the time, and wasn’t able to concentrate very well.”
After the first collapse, Tosha said, “She had several more syncope [fainting] episodes at church, school, and home, but during November, she started staring into space with no response to people around her.” She passed out again at the school while playing field hockey. A doctor prescribed Celexa for anxiety.
Last December 2, things took a dramatic turn for the worse. Lethargic and staring, she could barely move or respond. “I thought this really might be it for her,” Tosha said. “Her back arched backward, her hands started flailing, and all of a sudden it was her entire body. I called the ambulance to take us to the hospital and she just kept getting worse, thrashing her head back and forth, up and down. It was horrific.
“At the ER they did all the blood work again and said that it was anxiety and they were sending us home. I was in disbelief.”
At another hospital visit this February, “the doctors came in and said that she had conversion disorder and that something such as massive [emotional] trauma must have occurred to make this happen. The doctor said she was going to send a psychiatrist up to talk with us because abuse is usually why this disorder comes about.”
The psychiatrist, after a brief evaluation, told them “what was happening was clearly stress related and doesn’t match that of one with a seizure disorder. She had a psychiatric issue, he said, and he wanted to speak with her alone.”
In private, the psychiatrist asked Lori if she had been abused and suggested her vocal tic sounded like she was saying, “Hit Me.” For the first time in the whole ordeal, Lori felt hopeless and alone.
“Here we are in a hospital,” her mother said, “and they are treating us like we are criminals or something.”
Amid the claims by health officials of conversion disorder, a New Jersery doctor, Rosario Trifiletti, reached out to the girls in LeRoy and Corinth and offered a free medical workup. Based on blood tests and an examination, he diagnosed Lyme disease in Lori, and she began a new treatment regimen. “An IV antibiotic has helped Lori quite a bit these past six months, but she is still a long way from being back to herself again,” her mother said, crediting a local doctor supervising her treatment with being “wonderful and very helpful, considerate, and caring.”
For Alycia, “Dr. Trifiletti is the only one to run the proper batter of tests, which found strep and mycoplasma,” Randy Nicholson said. Since then, “Dr. Kamal of Saratoga Pediatrics here in New York has always, slowly and cautiously, treated this as a PANDAS-like illness, without ever hinting at conversion disorder.
After antibiotics and other treatments, Alycia has improved considerably – her father puts her recovery now at about 85 percent. “I strongly believe mycoplasma is a very important element as this would explain the chronic fatigue and severe joint pain, as well as her positive reaction to long-term antibiotics for this particularly resistant strain of bacteria.”
Like many parents of children with chronic or mysterious illnesses, the Nicholsons have spent more time considering possible causes than most doctors:
“Other possible triggers or combinations that have not been investigated,” Randy told us, “are the fact that Alycia had received her third and final vaccination of Gardasil in the spring of 2010, after which she suffered from a multitude of rashes and infections throughout that entire year leading up to her initial seizure in May 2011.
“Another possible trigger or combination could be the relatively recent introduction on the market of dangerous genetically modified foods.
“Could another combination have something to do with the recent increase of EMF due to increased tower output for the new iPod or iPhone technology and WI-FI all over?”
We met with Trifiletti in May in Chicago, and found him open, like Randy Nicholson, to a variety of possible factors in the tic outbreaks in addition to Lyme, strep and mycoplasma.
Lori Brownell’s video, from December 18, 2011 begins this way:
“Hello everyone, my name’s Lori and this
is my first video. So I’ll start out by telling you a little bit about myself.
I’m 16, I’m in 11th grade, and I play softball, like, all the time.”
Softball all the time. Combined with the fact that the only other person stricken was the school’s other star softball pitcher, it seems reasonable to wonder whether that common activity might have anything to do with their common affliction. (That is, of course, unless you are inclined to pass it off as the hysterical behavior of flighty teenage girls, the so-called “cheerleader syndrome,” as another New York Times article dubbed it in LeRoy.)
Through a number of interviews in Corinth and Freedom of Information Law requests, our attention focused on the unique character of the softball infield, where the pitcher alone stands. Unlike in baseball, it’s supposed to be devoid of grass – a covering of clay or ground-up shale or other substances designed to be firm but porous.
The pitcher’s role in the game is unique. She is the only one who touches the ball on every play, and softball pitchers often lick their fingers to get better traction on the ball. Lori described how she would rub her hands in the chalk circle surrounding the pitcher’s mound, then lick her hand. Had the ball or dirt, we wondered, been a source for anything harmful?
The school has a contract with a local landscaping firm to take care of its grounds and athletic fields, and at least twice a year, the ball fields are sprayed with pesticides. The spraying plans, as required by state law, are on file with the district, which is responsible for following the regulations.
The landscaper told us the firm “spot-sprays” the softball infields to kill any weeds that take hold. According to the "Corinth Central School -- Athletic Fields" list, herbicide was applied on 5/1/10, 4/22/11, and 9/3/11 – the middle date of April 22 being about three weeks before Alycia collapsed on the pitcher’s mound, and about the time she first began feeling unwell. .
The landscaper also provided a calendar showing good weather when the pesticides were applied – applying them during wet weather is not advised. April 30, 2011, however, brought an unusual event when the Upper Hudson River, which abuts the playing field, surged as a result of snowmelt in the Adirondacks.
used on the Corinth infields is called Lesco Three-Way Selective Herbicide. Its
safety data sheet, obtained from the school district, warns of danger to
children and fish if ingested. It also says that if ingested or inhaled, it can
cause permanent eye damage and “muscle weakness, lethargy, loss of appetite,
abdominal pains, headache, or shortness of breath. May
irritate the respiratory tract or cause dizziness.”
An Occupational Safety & Health Administration fact sheet describes potential symptoms of toxicity as “weakness; stupor; hyporeflexia, muscle twitching; convulsions; dermatitis. In animals: liver, kidney damage.”
The Corinth schools appear to take an aggressive approach to pesticide use, at least in comparison with LeRoy. Ironically, pesticides were banned statewide on school grounds in New York as of May 18, 2011, less than a month after the April spraying. After that date, special permission was supposed to be required from the school board or health department. In Corinth, the pesticide spraying seemed to continue uninterrupted and without any change in the formulations used (the new law allowed for less toxic compounds).
In LeRoy, no pesticides at all were used on school grounds in 2011, in accordance with the new state law. But we recently reported on a crop-dusting incident at an adjacent cornfield last September that was caught on video by a concerned farmer; he questioned “what part of the chemistry set” was dumped on the crop and said he might start eating organic corn.
As part of their effort to establish that there was no safety risk, school officials in LeRoy commissioned an environmental study. But as we reported, it did not look at any currently used pesticides that might have drifted or seeped onto school grounds.
Then there’s the weather. The previous few months in LeRoy had been the wettest ever in the Rochester-Buffalo area, and the school is sited on low-lying land that includes a federally designated flood plain and wetlands. We wondered if that might have exacerbated pesticide runoff from nearby fields, or, conceivably, have delayed the crop-dusting to a later date than usual – September 22, a Thursday and a school day.
We tried to ask about these issues but the person designated by the school board to discuss them did not keep several interview appointments. And we asked the state department of Environmental Conservation, which investigated the crop-dusting incident in LeRoy, about Corinth’s spraying.
Lori Severino at the conservation department sent us this response:
“No DEC inspections were conducted at the Corinth High School. No inspection is required by this Department, unless we believe there has been a violation of our laws or regulations. The prohibition associated with pesticides on school grounds is in the State Education Law and State Ed enforces it.
“The Environmental Conservation Law was amended in conjunction with State Ed Law, but only for DEC to develop guidance with the Department of Health and State Ed. DEC would also provide an emergency exemption to allow pesticide use for environmental reasons. State Ed and DOH provide exemptions for other reasons.”
The state Department of Health, as we’ve noted, has said there is no possible connection between the LeRoy and Corinth outbreaks, and so the latter won’t be investigated.
None of this points directly to pesticides as a possible factor or co-factor. But their proximity to the cases in both Corinth and LeRoy – along with the findings of strep, Lyme, and mycoplasma exposures, not to mention complications from a possible Gardasil vaccine injury -- show why ruling out environmental or infectious possibilities is so important before leaping to a “conversion disorder” diagnosis and cutting off further inquiry.
So what’s next? The Nicholsons are enjoying Alycia’s gradual return to health – the varsity boys soccer team she played on won the Rivalry Cup in double-overtime last week -- and looking forward to another softball season. Lori is taking classes at home, about to end another round of antibiotics that haven’t seemed to offer much help. She and her parents are investigating other possible approaches including treatment under a “functional medicine” model that seeks to understand how the body’s natural defenses and mechanisms have gone awry and return them to full strength.
“It is difficult enough being a teenager,” Tosha says. “But having this enter her life so quickly is very unfair and she deserves a resolution. She deserves to know what is affecting her and if it is possible to fix, as do all the other individuals experiencing these same symptoms.”
Dan Olmsted is Editor and Mark Blaxill Editor at Large of AgeofAutism.com. They are co-authors of the book, “The Age of Autism – Mercury, Medicine, and a Man-made Epidemic.”