Mechtler disputes PANDAS diagnosis for Le Roy girls seen by New Jersey doctor
It isn't surprising, according to Dr. Laszlo Mechtler, that a doctor from New Jersey who makes a living diagnosing PANDAS came to that conclusion today in the Le Roy illness case.
Dr. Rosario Trifiletti appeared on the Dr. Drew television show tonight and also released a statement saying that "five of eight girls show evidence of carriage of streptococcus pyogenes and seven of eight show evidence of infection with mycoplasma pneumonia."
"This is what everybody expected him to do," said Mechtler, who is part of the team at Dent Neurological Institute who diagnosed the girls with conversion disorder.
Mechtler added that Dent's physicians stand by their original diagnosis and added that other experts are ready to step forward -- including Dr. Susan Swedo, the first doctor to write about PANDAS -- to support the conversion disorder diagnosis.
"There are enough experts ready to basically dispute his allegations," Mechtler said.
In his statement tonight, Trifiletti expressly refuted the conversion disorder diagnosis.
On the Dr. Drew show, Drew Pinsky asked Trifiletti if he consulted with Mechtler, and Trifiletti said flatly, "no," and said there was no plan to consult with him.
In a tsk-tsk moment, Pinsky said it's bad for patients when "competing" doctors have differing opinions.
PANDAS is most often associated with what's called a "vaccine injury," when a child gets an infection from a vaccine. But Trifiletti made no mention of vaccines as a cause in either his appearance -- by phone -- on Dr. Drew, nor in his written statement.
"As with most illnesses, there is a complex interplay of genetic and environmental factors here," Trifiletti said. "As with all illnesses, psychological factors likely play some role as well. All we have done here is provided evidence for exposure to two infectious agents as potential environmental factors."
Prior to Trifiletti's statement, Mechtler predicted that Trifiletti would tie the infections to a possible environmental cause, calling it "dangerous" for the community.
"That he is saying this is a PANDAS weakness, related somehow to an environmental toxin, is only going to tie it back to Erin Brockovich," Mechtler said. "This diagnosis is going to be huge for these guys."
There are two views of Brockovich, Mechtler said. One is that she wants to do good for the community and the other is that maybe she's more focused on a lawsuit and making a name for herself.
Or, maybe, he said, the truth is somewhere in between.
"I don’t know her and I won’t judge her," Mechtler said "I want to think the best of people and believe the perspective that she wants to help these people. But if they say it's PANDAS and TCE, there's going to be lawsuits."
Trifiletti said his diagnosis didn't answer all of the questions people have, such as why now, why in this town, why a particular child and not another, but that "infectious exposure is simply 'the straw that broke the camel’s back.' "
On Dr. Drew he said, "I think (streptococcus) is one of the main factors and the most easily reversed factor. I already started talking to families about a treatment based on this."
Trifiletti said he was recommending a regime of antibiotics and anti-inflammatory agents, and Mechtler said the prescriptions will work for the patients, if they believe in Trifiletti.
He compared the treatment to a placebo effect and a religious ceremony. Since conversion disorder is a psychogenic illness, if the patients are hyped into believing a treatment will work, it will work.
And if that's the outcome, that's a good thing, Mechtler said.
"At the end of the day, all I want is to see the patients get better," Mechtler said.
Beth Miller, the mother of one of the original 12 girls, told Pinsky that it was easier to accept the PANDAS diagnosis than conversion disorder because her daughter, she said, is a normal, healthy girl who doesn't have any stress in her life.
Drew asked Miller about a series of operations she has apparently had and whether that was stressful for her daughter, and Miller admitted, "I'm still sick." Pinsky then turned his attention to another guest on the show.
The state DOH report said all of the original 12 girls had suffered significant stress in their lives, and Mechtler said over the weekend that the stress for some of the girls at some point in their lives is "everything you could imagine and worse."
Mass psychogenic illness refers to passing of one symptomatic behavior from one person to another. While not all 12 girls originally knew each other, there is a chain of connection among all of the patients diagnosed with conversion disorder.
After the jump (click the headline to read more) is the full statement from Trifiletti:
I have now had the opportunity to review laboratory data collected in standardized fashion on eight of the nine girls I examined in Le Roy, NY, on 1/29/12. Five of eight girls show evidence of carriage of Streptococcus Pyogenes and seven of eight show evidence of infection with Mycoplasma Pneumonia. All eight girls tested show evidence of infection with at least one of these pathogens. Both of these agents have been associated with a PANDAS-like illness with the sudden onset of motor and vocal tics. Thus, a PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder.
These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the cluster will remain a mystery. I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply “the straw that broke the camel’s back." However, the infectious exposure points the way to rational medical treatment for these children, which is of immediate importance. Such treatment, which involves antibiotics and anti-inflammatory agents, has already begun. Clearly, response to such treatment will be helpful in supporting my working diagnosis.
As with most illnesses, there is a complex interplay of genetic and environmental factors here. As with all illnesses, psychological factors likely play some role as well. All we have done here is provided evidence for exposure to two infectious agents as potential environmental factors. I would encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.
This is not a good thing, I have been through the dueling doctors thing 20 yrs ago. I picked up Mononucleosis in my 20's, At the time it hit I and my doctor thought it was a flu so I was given the usual let it run it's course routine however a few days later I went into emergency with what the doctor eventually called a migraine x12. I woke up in the middle of the night with a headache that felt like a hatchet had been buried in my head. The emergency doctor couldnt find out what it was neither could my doctor after about 4 days in and out of doctors offices and emergency. Then a sore throat hit, like so sore I couldnt eat jello sore. Same thing from my doctors at that time, shrugged their shoulders and said they couldnt figure it out. They were gonna test for cancers so I went to a different hospital (I lived in Syracuse back then) That emergency doctor said it was Mono, however there is a 4% of the population that Mono can severely effect and I was lucky enough to be one. (The doctor even joked that it was too bad my luck couldnt have applied to the lottery instead of this)
So while he treated me my other doctors and he warred about that diagnosis. I was tested for about 2 weeks until I said enough because the fear disapated as the 3rd doctor's treeatments brought me back to normal. Over that wasted away to 98lbs thanks to that infection, and learned that doctors can be very pompous, which is excaberated when they realize they are wrong.
As for the Leroy school issue, it seems the fog is slowly clearing, these perfect storms of circumstances can be so irritatingly simple once you are past them but so gut wrenching when they are in progress. School officials must really step outside themselves and really think how things appear to the public they serve. Appearances and following the letter of protocol sometimes needs to be thrown out the window when things start to go out of control. You need to get out of the us/them mindset sometimes and get in the we/our ( and I mean this in a sincere way not just a pr lip service way ) mindset to help people understand, transparency early on and taking an active role in getting people information even if you have to violate some protocols would have stopped this snowball before it became an avalanche.
For instance if Ms Cox had stood up after the Health Dept's informational meeting where they couldnt disclose the diagnosis. If she had turned to the crowd and just said "Well I dont know about all of you but that doesnt set well with me, let me look into this further and get some answers for all of us" Instead of what she did, this might not be at the point of distrust it is today.