Le Roy Investigation

[EAMom]

http://wivb.lininteractive.com/documents/Investigation_Summary_FINAL_020312_PM.pdf

 

I don't know how to copy and paste with a PDF. The report has vaccine, ages, tic hx, etc.

 

According to the report, only 6 of the girls had ASO testing. 4 were elevated, 2 were normal.

 

There is no mention of paired titers, or anti-dnse b , or throat cultures, mycoplasma...so I can only assume they weren't done.

 

The PANDAS to CANS paper (along with other stuff by Kurlan/Singer) are cited in the references.

 

There is also no mention of SC, so maybe that wasn't even considered???

 

IDIOTS!!!

[MomWithOCDSon]

But 7 of them had had 2 or more doses of the Gardasil vaccine?!?! Is it the temporal issue, i.e., the length of time between the last dose and onset of symptoms, that has led everyone to dismiss the vaccine as in any way causatory?

 

It just seems to me they're missing the forest for the trees, period. The "forest" being successive assaults on these girls' immune systems by microbes, viruses, vaccines and potentially environmental toxins, also, and the "trees" being that needle-in-the-haystack, single item or event that pushed everything over the immunological edge!

 

*SIGH*

[MomWithOCDSon]

It seems odd, also, that no one is credited with authoring this report. Why not?

 

And how is it in any way scientifically viable to perform different batteries of tests on different subjects and then draw conclusions from them? If some of them are being tested for ASO, but not all of them are, how are the results significant when reporting on "findings" for the group as a whole? 6 of the 12 were tested for ASO; 5 of the 12 were tested for heavy metals. Why weren't ALL of them tested for the same things, with the same tests, and evaluated by the same laboratory? I'm no scientist, but I remember enough about the scientific method to know that this haphazard testing methodology leaves itself wide open for misinterpretation of the results.

 

And what're these "Significant life stressors were identified in 11 of the cases" business?!?! In every television interview I've seen, the girls acknowledged no specific stresses at all prior to the onset of the tics.

 

Stinks of CYA to me, though not particularly well executed, IMHO.

[kimballot]

It seems odd, also, that no one is credited with authoring this report. Why not?

 

And how is it in any way scientifically viable to perform different batteries of tests on different subjects and then draw conclusions from them? If some of them are being tested for ASO, but not all of them are, how are the results significant when reporting on "findings" for the group as a whole? 6 of the 12 were tested for ASO; 5 of the 12 were tested for heavy metals. Why weren't ALL of them tested for the same things, with the same tests, and evaluated by the same laboratory? I'm no scientist, but I remember enough about the scientific method to know that this haphazard testing methodology leaves itself wide open for misinterpretation of the results.

 

And what're these "Significant life stressors were identified in 11 of the cases" business?!?! In every television interview I've seen, the girls acknowledged no specific stresses at all prior to the onset of the tics.

 

Stinks of CYA to me, though not particularly well executed, IMHO.

 

 

Nancy - I fully agree with you... but I don't think this was ever thought of as a research study. I think it started out with the girls seeking help from a local neurologist and then ballooned out. Mechler got involved, but clearly had not real idea how to test for PANS and seemed to base his testing on the abstract of the 1998 "first 50 cases" report.

 

Mechler has previously stated that he did not diagnose PANDAS because:

 

A. It is very rare (Ok... I don't think I need to go further with this one. Just because it is rarely diagnosed does not mean that these girls do not have it!)

 

B. Only one girl had a sore throat and none had elevated titers (we now know that some did have elevated titers- but apparently not elevated enough for his liking)

 

C. PANDAS has a prepubescent onset.

 

Now... let's look at the PANDAS to CANS paper they are citing... it says:

 

1. . Strep throat is difficult to diagnose, and single point ASO/DNASE B titers are NOT reliable indicators... You need to look to see if the titers are rising or falling - they say:

 

For example, serial increases in a patient’s antibody titers more accurately define infection than does a single absolute elevated antibody titer; measurement of both ASO and antiDNAse-B are more accurate than either alone;

 

and

 

The use of single-point-in-time assessments of anti- streptococcal antibodies is considered unacceptable by most investigators.2,19

 

2. The prepubescent onset should not be used as diagnostic criteria - they say:

this age limit may arbitrarily exclude some late-onset cases, including adults with the sudden onset of OCD after an infectious disorder.42,43

 

 

So... I don't understand why they are citing this paper. I may not like the PANDAS to CANS paper for several reasons... but even this paper seems to contradict what they did.

[SSS]

Hopefully, and probably, Dr. T did pull the same blood tests/ cultures on all the girls, and will run them all through the same labs.

[EAMom]

 

And what're these "Significant life stressors were identified in 11 of the cases" business?!?! In every television interview I've seen, the girls acknowledged no specific stresses at all prior to the onset of the tics.

 

 

I was thinking the same thing.

[MomWithOCDSon]

... but I don't think this was ever thought of as a research study. I think it started out with the girls seeking help from a local neurologist and then ballooned out. Mechler got involved, but clearly had not real idea how to test for PANS and seemed to base his testing on the abstract of the 1998 "first 50 cases" report.

 

Yeah, I know it wasn't intended as a research study . . . in format, it reads more like a "metastudy," combining the results of information and testing from multiple sources.

 

What disturbs me, though, is that it appears to draw conclusions from all these discrepant tests and methods. I suppose some people may be fooled or pacified by that, but I'm hoping not many! It's so disingenuous and lacking in validity.

[thenmama]

Looks like it was "authored" by the NY State Dept of Health Press Office staff. The document author shows as dmt06- which from some quick sniffing around looks like looks "Denise Trudeau" email dmt06@health.state.ny.us

 

Now- whether that's really who authored it, or just reflects whose software/system it was authored on or it was pasted into its final draft template, or who inherited the software/system from dmt06, well who knows. NYS DOH doesn't seem big on transparency (unless you count agenda/motives but guessing the transparency there is unintentional). And it doesn't really matter if it was dmt06 or another press office staffer who drafted it-- sure it was assigned and then cleared for release by someone higher up the food chain. It's clearly a product of the Department of Health spin doctors.

 

And since when has the content of cited publications had to uphold what it's being used to support or endorse? Sadly common practice doesn't follow that model-- and sadder still it's like that on all sides-- even some we're inclined to trust/support.

 

Crawling back into my dark cynical hole now...

 

 

TH

Edited February 4, 2012 by thenmama

[kimballot]

 

What disturbs me, though, is that it appears to draw conclusions from all these discrepant tests and methods. I suppose some people may be fooled or pacified by that, but I'm hoping not many! It's so disingenuous and lacking in validity.

 

You are SOO right - if something looks official and has some references at the bottom the general public assumes it must have been done correctly.

[kim]

I sure agree with the puzzled comments today about the irresponsible remark about PANDAS and an infection from a vaccine. It did make me think about something else that is "fuming worthy," though IMHO.

 

I remember reading this in the PDF

 

A comprehensive search of the biomedical and life sciences literature using the National

Library of Medicine database found a single case report of a 5-year-old Chinese boy who

developed transient tics after using large amounts of a mercury-containing herbal

mouth spray and a single case report of a 12-year-old Turkish boy who developed

transient tics after carbon monoxide poisoning.

 

For all of us who have been around long enough to remember the sheer ignorance of the thimerosal scandalthe above statement is really an outlandish insult.

 

The same studies that were HEADLINED as EXONERATING vaccines in the role of autism, kept showing an inconvient little finding. Now they may take another look at that

 

 

http://www.huffingtonpost.com/david-kirby/cdc-to-study-vaccines-and_b_837360.html

 

excerpt (bolding and underline mine)

 

The plan also seeks to deternine if the mercury-based preservative thimerosal is associated with increased risk for "clinically important tics or Tourette syndrome." The CDC cited one study (Thompson, NEJM, 2007), which "found that increasing exposure to mercury from birth to age 7 months was associated with motor and phonic tics in boys," and added that "an association between exposure to thimerosal and tics was found in two earlier studies (Andrews, Pediatrics, 2004; Verstraeten, Pediatrics, 2003)."And, noting that the IACC federal autism panel "suggested several studies including vaccinated versus unvaccinated children to determine if there are differences in health outcomes," the CDC said it will convene an "external expert committee to offer guidance on the feasibility of conducting such studies and additional studies related to the immunization schedule, including studies that may indicate if multiple vaccinations increase risk for immune system disorders."Meanwhile, the IACC has signaled a shift in research priorities into the causes of autism, moving away from genetic studies in favor of investigating the interaction between genes and environmental factors, which it said could include toxins, biological agents and vaccines.

 

 

David Kirby is referring to

 

 

http://www.cdc.gov/vaccinesafety/00_pdf/ISO-Final-Scientific_Agenda-Nov-10.pdf

Centers for Disease Control and Prevention’s Immunization Safety Office Scientific Agenda

 

Immunization Safety Office, Division of Healthcare Quality Promotion National Center for Emerging and Zoonotic Infectious Diseases

February 2011

 

Might it had made a little more sense to see what other vaccines including Multidose flu, Meningococcal , TD (thimerosal containing) might have been given along with or after HPV vaccination? Might that possibly factor in the picture along with the bacterial infections and or town toxins? Most of these girls would have been vaccinated as infant with thimerosal containing vaccine also. The synergy with aluminum and thimerosal is even worse. I wonder what metal testing was done? Did they use a chelating agent or just assume it would hang out in the blood or urine (kind of dangerous to just pull it out of the brain or kidney so I kind of doubt it...thimerosal that is).

 

I'm sorry if anyone thinks that this type of discussion just mucks up the PANS cause, but I find it hard to overlook the possiblity that there may be some overlap. I guess watching the confusion regarding Swedo's remarks (if she said it), others talking about "why," these girls with common bacteria, and the report of an 8th child who had received the HPV vaccine, well, I needed to vent too.

Edited February 8, 2012 by kim