New York Times Magazine and Leroy

[mkur]

We were burned by the media when I tried to help spread the word about pandas approx 7 years ago. I know how hurtful things can get. So sorry. I hope all the girls recover. I also hope that each will receive an answer on the cause. Good luck.

[kim]

I wanted to say welcome too corinthdad and LeRoyMom.

 

I also thought you might like to read through a timeline that an uncle of a 15 1/2 yr. old boy that became ill in N Indiana, put together. A breif form is posted in the 5th post down. The pdf is very detailed (found at the bottom of that post). His forum name is Digger.

 

http://www.flutrackers.com/forum/showthread.php?p=445003

[kim]

I read the article for the first time last night. Did I miss conversation of this comment?

 

Rosario TrifilettiRamsey, NJReport

 

..This is Dr. Trifiletti, the doctor mentioned in the article.

 

In the go-go world of today's media, we often want quick answers. HouseMD has one hour or so to figure out his mysteries. In the real world, medical mysteries take time to investigate. On the other hand, these girls were suffering in real time, and we needed to do something to try to help them.

 

I went to Leroy and had about 45 min with each of these girls and their families, none of whom had ever met me before. Do you think that is adequate time to take medical histories, explore all potential stressors and psychosocial issues? Of course not. Therapists would take weeks to do this. Jeez indeed.

 

There is one thing though that I have that is not available to the general public, including the author of this article - objective laboratory data. And this data strongly supports a diagnosis of PANDAS/PANS. Science has progressed to the point that one can do a test to determine whether or not one has PANDAS/PANS (it is colloquially called the "Cunningham Test"), and one can identify genetic risk factors for those disorders. This is being done on these patients, and will put to the speculations to rest once and for all. In the not to distant future, we will have a credible scientific explanation for this strange event. And when we do, it may well appear in Scientific American, rather than the New York Times.

Edited March 12, 2012 by kim

[LeRoyMom]

Ok, I decided to read some older forums that had postings on the whole LeRoy Cluster. Mechtler and McVige: Live Chat Tomorrow 5:30 pm EST Virtual date, anyone? This was one that caught my attention and I really wanted to bring up some things that I read in there.

 

1. Why did the girls decide not to go to Swedo? Well we received a packet from MedFit about a CD study and an opportunity to be looked at by Swedo. I can say from our stand point. Our movement and tic disorder neuro diagnosed our daughter with Tourette's not CD and I certainly did not want to be involved in a CD study. I am sure that the families that dealt with DENT and do not believe in their dx didn't want to be involved in a CD study either.

 

2. This Mechtler could not speak the truth if he tried. He continuely said he had seen all of the girls. We never went to DENT EVER. We never met him and he never saw our daughter. In our eyes at the time we were seeing an amazing neuro at Strong and she specialized in tic disorders as opposed to headaches and concussions. I don't know who the ###### he diagnosed with tic disorders!!!! Three girls were ALREADY previously diagnosed with tic disorders not by HIM!!!! He has been such a moron that I cannot understand how anyone could believe ANYTHING that comes out of his mouth. There was the whole thing about the girls came down with the tics due to the stress of the 9/11 threat levels......REALLY?!?! My daughter didn't have a clue about threat levels....lol. Then it was social media causing them. Also the bullying being caused by the kids that saw Dr. T.....ARE YOU SERIOUS?!?!?!

 

3. The damn dreaded "Placebo Effect"...LOL!!! Did anyone notice the large number of prescription meds in the pic of the NY Times article? Why haven't those had a placebo effect? Many of the girls were given a large number of serious meds that they were told would "fix" them and guess what....they DIDN'T! So if antibiotics, steriods, and anti-inflammitory meds are working I wouldn't say they were having a placebo effect.....I would say they were actually the reason the girls were getting better because they were solving the medical problem.

 

Oh and at last Dr. T.'s newest release:

LEROY GIRLS MARKEDLY IMPROVED WITH TREATMENT

 

I again visited Leroy on 3/11/12 and re-examined some of the girls with "The Leroy Syndrome" I had previously seen on 1/29/12. Of the nine girls I had initially seen, six were treated with a combination of ibuprofen then antibiotics. All six were markedly improved within several days of initiation of treatment, and four of the six remained fully improved. Two girls improved fully, but then had a mild-moderate exacerbation of symptoms following a URI-like illness - again with very rapid improvement with ibuprofen.

 

Two other girls were not treated, and have not improved. Another girl, also untreated, were lost to follow-up.

 

Three new cases of Leroy syndrome, all from the Leroy NY were seen on 3/11/12, making a total of 16 girls evaluated thus far

 

In the interim between visits, I have seen four other girls, two from NY state, one from New Jersey and one from Pennsylvania. Three of these girl's symptoms began well before the Leroy story became newsworthy. All had identical medical history to the Leroy cluster. All of these girls have evidence of either streptococcal or mycoplasma infection, and have also had a dramatic response to treatment.

 

Based on the scientific observations above, one can conclude

 

1. The Leroy Syndrome is a very well-defined, infection-associated, anti-inflammatory-responsive disorder, and in this sense is a PANDAS-like illness, with symptoms that overlap with PANDAS while not identical to it.

2. The Leroy Syndrome is not unique to Leroy, much as "Lyme Disease" is not unique to Old Lyme, CT.

3. The Leroy Syndrome, while possibly modulated by psychogenic factors (as is true of most illnesses), is primarily a medical illness and medically treatable.

 

On the same day I re-visited Leroy, a New York Times magazine article appeared authored by Susan Dominus. Mrs. Dominus, who is neither a physician nor a psychologist, elected to formulate her own theory on what happened at Leroy. This theory is based on conjecture regarding influences of stressful life events and an "absent father" on the children's behavior. Alternative explanations, including my PANDAS explanation, which Mrs. Dominus judges as "vaguely formulated" were very briefly mentioned. In fact, my theory of PANDAS (the "alternative fever response"/low histamine hypothesis") is very precisely formulated, and, while not yet formally published, is rather widely distributed on the internet. I categorically reject Mrs. Dominus' explanation and all similar models in which psychogenic factors play the major role. I stand by this position even more firmly than ever, and am in the process of gathering deeper molecular and genetic data to further investigate the syndrome. For example, we are sequencing mtDNA and the MitoNucleome in these patients.

 

In summary, the Leroy Syndrome remains a mystery, but it is now clear that is a medical disorder. I challenge all supporters of "psychogenic theories" to provide competing objective data.

[3boysmom]

Makes me want to scream out support for Dr. T! So frustrating that the NYTimes put their own moronic spin on this!

[Kiera]

Yeah for Dr T! You tell 'em!!

[peglem]

In fact, my theory of PANDAS (the "alternative fever response"/low histamine hypothesis") is very precisely formulated, and, while not yet formally published, is rather widely distributed on the internet.

 

Does anyone know where I can find his theory on the internet?

[corinthdad]

leroymom , welcome to the matrix . After Dr T & others reveal what this really is & how to treat it , do we go away or do we demand the answers as to why the coordinated efforts of dent & nys dept of health & the controlled media have tried desperately to convince the public that this is happening in one small local area & is purely psychological in nature . Those answers may reveal what is CAUSING this.I believe I have a good compilation of research on this but cant post here . When & if you would like to get deeper into this , feel free to e-mail me .