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.