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New Jersey doctor says Le Roy patients have 'PANDAS-like' illness, but psychogenic illness also possible

A New Jersey-based doctor who has seen nine of the girls in Le Roy with movement disorders issued a new statement this morning affirming his diagnosis of a "PANDAS-like" illness.

Dr. Rosario Trifiletti said lab work from his examinations is now complete and he has found three different infections in the nine girls. The findings, he said, support his diagnosis of a "PANDAS-like" illness.

"Given the clinical and laboratory data, I find a PANDAS-like illness a very likely medical diagnosis in these children," Trifiletti said.

As for Trifilletti's definition of "PANDAS-like" illness, attempts to call his office today have resulted in busy signals.

Dr. Laszlo Mastler, medical director of the Neuro-oncology Department at the Dent Neurological Institute, said he knows of no definition in medical literature of "PANDAS-like" illness.

He said it would be up to Trifilletti to share his diagnosis with the medical community if he's discovered a new illness.

"He should publish his findings in a medical journal, which would mean a formal review to be accepted, with strict academic and scientific proof," Mechtler said.

Trifilletti said of the nine patients, five showed infection by streptococcus pyogenes and eight showed infection by mycoplasma pneumonia. Two patients also showed the presence of Lyme disease.

The press release doesn't explain how it's possible for different people with different infections to all exhibit the same symptoms.

In the same statement, Trifiletti said he remains open to the possibility of "mass psychogenic illness."

Neurologists at Dent have diagnosed 15 patients from Le Roy with conversion disorder, and concluded the situation in Le Roy is a rare case of conversion disorder spreading as mass psychogenic illness.

MPI, according to Trifilletti, is a diagnosis that "can never be supported or refuted by objective findings."

Mechtler disagrees with the assertion.

"Conversion disorder can be diagnosed based on an examination," Mechtler said. "This is something I've tried to explain to the media early on. It is not a diagnosis of exclusion. Any neurologist can pick it up on an examination."

Hysterical blindness, Mechtler said, is an example of a conversion disorder that a doctor can detect on a first office visit.

As for the infections, Trifilletti doesn't explain what number of the nine patients have two or three infections, but clearly some of the nine patients he believes may have a "PANDAS-like" disease have only one infection.

In a forum posting in 2010, Trifilletti said he believes "the key to PANDAS in many cases is co-infection," meaning patients have two or three of mycoplasma, strep or Lyme.

Of the general population, 5 percent of people carry all three infections, according to Trifilletti, but not all develop PANDAS.

According to a paper Trifilletti links to in his post, research shows that up to 60 percent of 15- to 19-year-olds have a mycoplasma infection, and Trifilletti says that 20 percent of children have a strep infection.

According to Trifilletti's own writing, the presence of these infections does not mean PANDAS, and that it would take at least two infections, if not all three, to produce a "PANDAS-like" illness.

"These are just my ideas, not reality," Trifilletti writes. "But you gotta have hypotheses or there are no answers -- that's just how science works."

Mechtler said Trifilletti obviously has the confidence of the parents and, given Dent's diagnosis of conversion disorder, a treatment the patients believe in will help them get better.

"If they're getting better, that's what counts, and I'm very happy," Mechtler said. 

Denise Grubbs
PANS formerly PANDAS-PITAND's picture
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Joined: Feb 5 2012

Somehow, the complete press release did not make it into this news article - here it is:
February 22, 2012
Press Release:
LE ROY, NY TEENS: UPDATE FROM DR. TRIFILETTI
Ramsey, NJ — February 22, 2012 — Rosario Trifiletti, MD issued the following statement today regarding the teens he is treating in Le Roy, NY. National attention was drawn to the plight of the teens when they were suddenly afflicted with uncontrollable bodily movements sometimes described as tics.
“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.
To reach Dr. Trifiletti contact:
Telephone: 201-962-7284
Email: trifmd@gmail.com
Website: http://www.site.neurokidsr.us/
For additional Information about PANDAS:
http://www.pandasfoundation.org/
http://www.savingsammy.net/
http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-ask...
http://ocfoundation.org/PANDAS
http://www.askdrsears.com/topics/childhood-illnesses/ocd
http://www.pandasnetwork.org/
#########
http://www.pansawareness.org//Home.php

Denise Grubbs
PANS formerly PANDAS-PITAND's picture
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Joined: Feb 5 2012

A review of Dr. Susan Swedo's (of NIMH) most recent paper will provide information on what a PANDAS-like illness is. Please see: http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf, especially page three, where the diagram and related discussion gives a better understanding of these conditions. Dr. T is likely referring to PITAND. PANDAS, by definition, is triggered by strep and falls under the category of PITAND, in which any infectious trigger, such as mycoplasma pnueomoniae, strep, tick-borne infections such as Lyme disease, Babesia, Bartonella, Ehrlichiosis and some viruses can trigger symptoms.

Denise Grubbs
PANS formerly PANDAS-PITAND's picture
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Joined: Feb 5 2012

For anyone who is interested in better understanding the conditions of PANDAS-PITAND, which fall under the larger category of PANS, please see the following research literature:

From Research Subgroup to Clinical Syndrome: Modifying the PANDAS criteria to Describe PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). Swedo, SE, et al, 2012. Currently available online here: http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf

Neurocognitive functioning in youth with pediatric autoimmune neuropsychiatric disorders associated with streptococcus. Lewin AB, et al. (September, 2011)

Clinical Factors Associated with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Murphy, TK, et al (2011)

The Immunobiology of Tourette's Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus and Related Infections: A Way Forward. Murphy, et al (2010)

Maternal history of autoimmune disease in children presenting with tics and/or obsessive–compulsive disorder. Murphy, et al (2010)

Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. Yaddanapudi, K et al (2009)

Antibody-mediated neuronal cell signaling in behavior and movement disorders. Kirvan CA, et al J Neuroimmunol. 179(1-2):173-9. 2006; Epub 2006.

Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's Chorea. Kirvan, CA, et al (2006)

Therapeutic Plasma Exchange and Intravenous Immunoglobulin for Obsessive Compulsive Disorder and Tic Disorders in Childhood. Perlmutter, SJ, et al (1999) Note: This IVIG study is likely the best we have for supporting it's use until NIMH publishes the results of their current study; it's available online here: http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

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