Wednesday, February 1, 2012

LeRoy and Lyndonville

Twelve teenage girls attending the same school in LeRoy, New York, suddenly developed tics and vocalizations—in other words, Tourette’s Syndrome.  Neurologists at the nearby Dent Neurologic Institute who've “treated” several of the girls are writing them off as suffering from hysteria (couched in the sanitized “conversion disorder” to make the diagnosis palatable) and insisting that the Tourette's is totally real yet completely psychogenic.  
Here we go again. 

LeRoy is a stone’s throw away from Lyndonville, the site of a big ME outbreak in 1985 that affected mostly children, which the Centers for Disease Control and many local physicians (Dr. David Bell being the notable exception) dismissed as mass hysteria.

Four years of medical school, a three- to four-year residency, usually followed by a fellowship, and conversion disorder is the best the Dent neurologists can muster? Apparently. Next, they'll be calling British psychiatrist Simon Wessely to ponder how the girls' negative “illness beliefs” are causing their physical symptoms.  

Instead, why not consider a possible toxic exposure—especially since a train derailment a few miles from the school back in 1970 spilled cyanide and trichloroethylene (TCE), a known neurotoxin. The site was never cleaned up, and the chemicals seeped into the water supply. Even the Environmental Protection Agency admits it dropped the ball on the LeRoy spill.

But why did the girls get sick 40 years after the fact?  Perhaps because the year before the Tourette’s outbreak the school constructed new playing fields, including a field for girls’ softball. Could the construction have stirred up the toxins in the soil or was more contaminated soil imported to build the fields?

Unlike the events of 25 years ago in Lyndonville, there’s empowerment with the Internet. One of the affected girls, spirited 17-year-old Lori Brownell, an avid softball player until she became ill, is chronicling her ordeal with humor on YouTube under the moniker rodeocowgirl131. In addition to the Tourette’s symptoms, Lori, like some of the other girls, is also passing out and experiencing seizures.

Thankfully, the parents aren’t taking the conversion disorder diagnosis seriously either. They’ve sought out other neurologists to treat the girls, and they’ve hired consumer advocate Erin Brockovich (immortalized in the eponymous film that starred Julia Roberts) to investigate, kick ass and take names.


10 comments:

  1. Opportunistic skepticism, premeditated agnosticism, all that jazz.

    Must be nice to be able to posit a competing hypothesis based on the complete absence of empirical evidence, the instant mistrust of the patient, and a premature authoritarian psychogenic proclamation.

    Quite the career move.

    Presumably whoever invented the paradigm "If yet medically unexplained:- eschew patience and further funding, file under psychiatry" is the one to pay homage to.

    -SJ

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  2. Missed you, Mindy. Thanks for posting.
    I really, really wish someone would look at these youngsters' mitochondria, the tiny energy-producing organelles in most of our cells, which also play into the immune response. The more I learn about these critters, the more I think they have profound role in our illness and theirs, along with Parkinson's, Alzheimer's, MS, Gulf War Syndrome... most neurological or (neuro-immune) illnesses.

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  3. There's a good article on the Scientific American website discussing the possibility that this is PANDAS, or PANS as it is now known. It's caused by an autoimmune reaction following infection with Strep and sometimes other pathogens. Michael Jenike, a professor of psychiatry at Harvard Medical School says "I just can't imagine that it's conversion or mass hysteria; that diagnosis doesn't mean much. It's a name people stick on things when they don't understand what's going on."
    http://www.scientificamerican.com/article.cfm?id=could-infection-cause-tourettes-like-symptoms-teenage-girls&offset=2

    It's pretty clear from info at the OCD Foundation website that the doctors who dismissed the possibility of PANS because only one of the teens had a sore throat, didn't follow the recommended procedures to rule out covert strep infections. http://ocfoundation.org/EO_PANDAS.aspx

    I'm glad the girls' parents aren't rolling over and accepting the mass hysteria story.

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  4. Katrina Berne, Ph.D.February 4, 2012 at 5:50 PM

    "Mass hysteria" means "I don't know what's causing this and it's easier to blame the patient's psychological state than to do the research." Psychiatry is the dumping ground for such mysteries. How often does a psychiatrist get to say, "There's nothing psychiatrically wrong with you so it must be all in your body"?

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  5. Psychiatrists/therapists do say that sometimes. Usually after a physician has sent their patient to them, saying it's all in the patient's head. "Um, no, your physician isn't qualified to make that diagnosis, and in any case he's wrong."

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  6. just the idea that medical professionals are willing to stick their head in the sand and show their rumps rather than admit there are things they don't know pisses me off so badly i'm no longer rational.

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  7. If anyone is interested in the Leroy local news on this outbreak I offer the main news page ( you can search on that page for all the articles. Has been in paper almost everyday.
    http://thedailynewsonline.com/news/

    and be sure and look at the opinion page , in particular a local pediatrician's take:
    http://thedailynewsonline.com/opinion/editorials/article_d7d8c930-4e83-11e1-a891-0019bb2963f4.html#user-comment-area

    I am particularly saddened by the "stop all the media attention, it is making it worse" logic. I hope the families continue to make noise until they figure it out.

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  8. Mady Hornig from our Lipkin Columbia Initiative offers an explanation. They first dosed their mice with an agent to break down the blood-brain barrier. Then they added a virus to produce tics and seizures.

    The group from Le Roy may have encountered an environmental agent and/or a virus that produced their symptoms.

    ME/CFS could also be something similar. There are 80,000+ untested chemicals in our environment. Problems with chemicals continually trickle in to the mainstream media. I think last week they found another chemical that is perforating our blood brain barrier. Environmental chemicals are heavily underdiscussed in our malady, me thinks.

    Hornig found auto-antibodies in their diseased mice, collected some, injected them in healthy mice and voila, the new mice got tics and seizures, too! Rituxan gets rid of auto-antibodies in time, thinks Mella and Fluge. Hmm .. wonder if Hornig et al have tried that out on their mice.

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    Replies
    1. It's happening again. This time in San Antonio.

      Mysterious illness links teenage girls .. http://www.kens5.com/news/local/ito-151467795.html ..
      migraines, seizure-like activity, nausea, dizzy spells, black-outs, stomach problems. They describe my onset of ME very well. I also had tics, but then I was camping just miles away from the Le Roy area.

      Their doc is pointing to autoimmune disorders triggered by infection.

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  9. Perhaps it is mycoplasma and strep? One doctor thinks so...
    http://www.wgrz.com/news/article/154420/1/Doctor-Offers-Second-Opinion-on-LeRoy-Case

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