NIH and DR. T coming to Leroy

[thenmama]

I've heard there's a theory that some strains of these illnesses may be more likely to cause PANS in those susceptible-- and have also heard and/or maybe read on here (?) that there have been "outbreaks" or clusters of newly dx'd cases in particular areas which has either supported or perhaps precipitated the theory about the strain variants...Also have seen that resurgence in some conditions- like ARF and SC has been believed to be associated with more virulent strains of the bacteria and know firsthand that our family has one of these terrier-like strains of GABHS-- my son can't go off Clindamycin right now or it springs back-- we're on our way to IVIG now.

 

Was discussing this with a doc the other day who added that it seems likely, especially since it's known this is true with other conditions-- I think Glomerulonephritis and ARF, etc.

 

Briefly mentioned here

 

The following sites seem they might be of interest to us PANS parents:

 

Collection of Strep Strains

 

CDC GABHS Pathogen Surveillance

 

Think I won't be getting much work done today!

 

TH

[EAMom]

Please don't take this as selfish as it will sound, but is anyone else worried that "acceptance by mainstream medicine and insurance" will have its own price to pay for our kids? Like if NIMH keeps publishing long-term abx are not warranted, but says the opposite face to face, insurance could make a stand against it. I guess what I'm saying is that "we" as a group are benefiting to a certain degree by flying under the radar. Mainstream acceptance could result in more rigidity in what is covered.

 

Yeah, kind of like what happened with Lyme, where docs lost their licenses for treating with long-term abs and it's illegal to run the igenex test in NY.

Edited January 24, 2012 by EAMom

[EAMom]

Latest news - Another teen is affected... now at 13 teens with tics

 

http://www.wgrz.com/news/article/152174/37/New-LeRoy-Student-With-Strange-Illness-Emerges

 

BTW, you can leave comments here:

http://www.wgrz.com/comments/152174/37/New-LeRoy-Student-With-Strange-Illness-Emerges

[JAG10]

JAG - I agree. My initial reaction, too, is wow! Dr T can help, more awareness, more publicity, more knowledge! Then that lonely feeling of can I get him if I need him for my child becomes scary. I remember that 3 years ago my daughter was only the third child treated by Dr B, and his first girl. I remember begging him to contact Dr.Cunningham and Dr K, him jotting down notes in front of me as fast as I could tell him..."C, can you spell 'Miroslav Kovasevic' for me?'" Another mom and I from here pestering the life out of him to call Swedo to learn more about hd ivig. It's all sort of a blur when I see his new infusion center now with kids stacked up like cordwood. And, yes, I now must wait 7 weeks for a check-up appointment. But I am in fine company. There is a price

for giving so freely, but I believe we all become stronger.

 

My dd12 is one who benefited from your persistence and Dr. B's courage/compassion. Her first IVIG was with Dr. K in 5/2010 paying out of pocket, but then we switched to Dr. B that Fall walking on the path you and a few others had trail-blazed. I have always known that about you, Coco and have been a silent fan. Thank you for helping to set the stage to make it possible to get my dd back.

 

I suppose rather than media coverage or even medical acceptance, I hope there is a clue in this specific set of circumstances that leads to more investigation, more probing questions, more dots to connect or exclude, more inquisitive medical minds intrigued to become involved rather than treat this area like toxic waste.

[coco]

I am honored to be able to "pay it forward" in any way I can. So many were just as kind to me!! You are all the most amazing, resilient and intelligent people I have ever known.

[norcalmom]

I just wanted to correct part of EAmom's post from above. Igenix is not an "illegal test in NY", it has been certified as a test BY NY health departement. There was a article in the NY times about a decade ago that started this rumor - and a very thorough investigation. Unfortunately the one article has more legs than any of the other stuff that has been going on in the past ten years. Its all that anyone can remember - even my ped - that's all she said - "don't use that lab in Palo Alto - it isn't any good I remember reading an article on them a few years ago."

 

From what I have read about the differences isn't so much in the testing - its in the interpretation. When you get your results, you have a list of bands (that each test for a different thing) and for a Standard western blot test, you would have to have 5 bands that are positive (this number was an arbitrary number decided LONG ago) and they don't care which bands. Igenex's interpretation is that if 2 of some specific bands are positive, (like the LYme specific bands!) then you are positive. This on the IgG portion - which really only determines if you were exposed to Lyme and make the antibody - so anyone that ever had it (treated, or untreated - perhaps their immune sytem took care of it) will show up as positive. On the IgM they agree - 2 bands is enough (igenix or standard western blot). So, if you are like us (pandas parents) you can get a copy of the test results and look up each band and make your own assessment - not just the doctor telling you "you are positive/negative" it isn't that simple.

 

 

The tests all stink, because the lyme itself isn't floating around in your blood, and you may not be making antibodies to it (especially if you had it for a long time). Like a strep titer. The other tests (like the PCR tests - that look for actual lyme DNA in your blood/urine) are better in that if they are more specific, you can be sure you have it and its active - but they are not usually positive even in active lyme patients (because like I said it doesn't live in your blood/urine - and even in this test what they do is give you large doses of antibiotics to try to kill some off and send it to your blood/urine to be removed by your body - after 5 days of that they test you)..so all the tests are pretty bad.

 

This from Igenx website:

Laboratory Certifications

 

CLIA 05D0643914

Medicare ZZZ32759Z

CA State Dept of Health CLF4033

FL State Dept of Health 800002892

MD State Dept of Health 885

NY State Dept of Health 3172-805133A0

PA State Dept of Health 025659

NPI 1396837605

 

I'm sure someone that knows Lyme testing better than me will know the entire history, and I didn't want to hijack the thread, but from what I've read the tests Igenex test are cleared and held to an even higher standard due to the article.

[EAMom]

There was a article in the NY times about a decade ago that started this rumor - and a very thorough investigation.

 

I wonder if this is the article? http://www.nytimes.com/2005/08/23/health/policy/23lyme.html?pagewanted=all

 

I do remember my friend in NY (who's family turned out to have Lyme) told me about it being "illegal", and I thought that was really odd, but I told her just to get the blood drawn out of state since they travel a lot anyway.

 

BTW, here is another thread on this topic, apparently there are some PANELS through IGenex that "are not available to New York residents"

http://www.latitudes.org/forums/index.php?showtopic=9238&st=0

Edited January 25, 2012 by EAMom

[norcalmom]

I found it - on the Igenex website there are 3 tests not available in NY - but all the other tests are. NY - they don't offer the "initial screening" which is pretty useless and most people that are suspicious enough to think they have lyme order the other test (wester blot) anyway - regardless of what lab they use. The other two that aren't in NY are: the Lyme Antigen Detection Lyme Dot Blot Assay (LDA), and the Reverse Western Blot (RWB) for Antigen.

 

The PCR test mentioned in the article is available as well as all the "standard" tests and co-infection tests.

 

As I recall in our testing - they did the PCR test, and then if that comes back positive (which it did) what they did was confirm it with the Dot Blot (or was it the RWB?) test. So, the three tests not availible aren't ones that you would be ordering anyway. I don't know what the issue NY has with the screening test - the ELISA test (the regular screening test - is horrible too, so I can't imagine that the Igenx one is worse!) They may let more people through with more liberal screening - but the issue with lyme is more that the tests come back negative when they have it - and this is just a screening test that points you to more investigation of Lyme before ruling it out.

 

Her is a link to their testing page with info on their tests.

 

http://igenex.com/Website/#

[T_Mom]

--back to the poor girls with sudden-onset ticcing in Leroy--

 

Is anyone else concerned that there may be risk of a face-saving 'cover-up', of sorts, if the girls DO respond to PANS treatments?

 

I wish there was a 'team' of PANDAS doctors supporting each other as they review the situation together.

Dr. T.'s video appearances are WONDERFUL!!

 

Who is going from NIH?

Edited January 26, 2012 by T.Mom

[Iowadawn]

I read today that the NIH is now asking the girls to come to them for free testing. Dawn

[T_Mom]

I read today that the NIH is now asking the girls to come to them for free testing. Dawn

 

 

wow-- that is exactly what I would do if I were in the parents' shoes.

 

This should provide the most top-notch review one could hope for, to rule out just about everything -- including PANDAS.

(they may even get to be seen by Dr. Swedo and the research team there.) Undoubtedly NIH would include infectious disease review and a lumbar puncture to investigate CNS involvement/infection. Have these girls had lumbar punctures? Has anyone tried antibiotics?

Edited January 26, 2012 by T.Mom

[EAMom]

I read today that the NIH is now asking the girls to come to them for free testing. Dawn

 

 

wow-- that is exactly what I would do if I were in the parents' shoes.

 

This would provide the most top-notch review one could hope for, to rule out just about everything -- including PANDAS.

(they may even get to be seen by Dr. Swedo and the research team there.)

 

Yeah..I'm not sure Swedo is going to be involved with the testing, although maybe she can do a consult or get involved somehow. It sounds like there is a group at NIH studying "Conversion Disorders".