Kurlan and Swedo -- an analogy

[kim]

There once was a cool cat named Buster

Analysis he always could muster

Did you get his post?

He’s smarter than most.

No wonder my brain starts to fluster.

 

So I take a step back

Reconsider the facts and allergy to cats

Where was it that I have seen

Cat dander and a relationship to N acetylglucosamine

 

Ok only half joking. 2 boys who IgE test positive to cats.....You don't suppose??????

 

http://www.sciencedirect.com/science?_ob=A...b04db014cd0c506

 

Lectin histochemistry of glycoconjugates in the feline hair follicle and hair

 

http://www.wipo.int/pctdb/en/wo.jsp?WO=199...;DISPLAY=CLAIMS

 

2. Affinity purified human T cell reactive feline protein treated in such a manner as to remove O-linked carbohydrate moieties, thereby producing modified human T cell reactive feline protein which stimulates T cells and which interacts with human immunoglobulin E to a lesser extent than affinity purified human T cell reactive feline protein interacts with human immunoglobulin E.

[Buster]

I will undoubtedly regret starting this thread

 

It’s hard not to sound like a critic

When studying about beta hemolytic

Streptococcus Group A

And ELISA assays

And research that itself is arthritic

Edited April 8, 2010 by Buster

[kim]

That ones goooood!

 

It’s hard not to sound like a critic

When studying about beta hemolytic

Streptococuss Group A

And ELISA assays

And research that itself is arthritic

[thereishope]

Buster, you'll regret it more when someone just browses the thread and we have a headline that reads...PANDAS parents not only blame the bear, but cats as well!

 

I can see it on one of those tabloid papers right now!

[MomWithOCDSon]

There once was a cool cat named Buster

Analysis he always could muster

Did you get his post?

He’s smarter than most.

No wonder my brain starts to fluster.

 

So I take a step back

Reconsider the facts and allergy to cats

Where was it that I have seen

Cat dander and a relationship to N acetylglucosamine

 

Ok only half joking. 2 boys who IgE test positive to cats.....You don't suppose??????

 

http://www.sciencedirect.com/science?_ob=A...b04db014cd0c506

 

Lectin histochemistry of glycoconjugates in the feline hair follicle and hair

 

http://www.wipo.int/pctdb/en/wo.jsp?WO=199...;DISPLAY=CLAIMS

 

2. Affinity purified human T cell reactive feline protein treated in such a manner as to remove O-linked carbohydrate moieties, thereby producing modified human T cell reactive feline protein which stimulates T cells and which interacts with human immunoglobulin E to a lesser extent than affinity purified human T cell reactive feline protein interacts with hu man immunoglobulin E.

Kim --

 

I am too "science-dumb" to follow. Can you help me out in plain English? DS is 1) allergic to cat dander and 2) taking an NAC supplement. So . . . . . ? Will he endure cats better with the NAC assisting him, or are we going the wrong way with this? Or is just that there's a link between people who tend to be NAC deficient and their also being allergic to cats?

 

Thanks!

 

Nancy

[kim]

Vickie,

 

If we attract some headlines, I want it on record that it's not just bears and cat's, it's hot water heaters too. Boys can't get within 10 feet of it with out symptoms kicking up. Must be something about the exocomponant nanoparticles interacting with the glycosaminoglycan compostion attached to the cellular proteins that are ill constructed in the golgi apparatus.

 

 

Nancy,

 

Please understand that you are no more science dumb than I am. No science or medical background here, so some (ok probably alot) of what I wrestle with is way over my head too, but I get some tid bid understanding with every hour that I invest (usually). I LONG to sit down with someone who can say "yes," this is plausable, and "no," you've got this part all wrong!

 

Anyway, I think you might be confusing NAC with NAG. I'm assuming you are using NAC because of the possibility that it may help with the OCD (precursor to glutathione, sulfur donor, etc)?

 

In people with autoimmune and allergic disease I have no doubt that there are many antigens (and components of) that can set things off, but I feel at least in our case, the state of the HOST is very important in how we react to the water heater, I mean antigen. I also feel NAG is a big part of that picture, at least initially.

[Buster]

I got some questions what was wrong with the Kurlan study (by analogy) -- several folks said that recent doctors had used the Zebra's and Horses analogy with them and they'd like some ammunition.

 

In the analogy, the flaws in the "Kurlan" study are:

1. Kurlan selected children who were already heavily medicated (and succesfully managed on meds) -- and thus checking for exacerbations is problematic
   
2. Kurlan broke the blind by informing pediatricians if the strep test was positive. On the assumption that the pediatricians followed the standard protocol they'd put the kids on antibiotics.
   
3. This means that Kurlan was checking whether treated GABHS caused ARF or SC or PANDAS. But we know from multiple other studies that treating GABHS early enough does not lead to ARF/SC.
   
4. Kurlan had sampling theory issues. He defined an exacerbation as one that occured within 4 weeks of a "definite" infection. When he relaxed his criteria he found more correlations. However, this was not in his report.
   
5. His kids had no OCD exacerbations in 2 years (regardless of GABHS) -- that is really unusual and certainly makes these kids different from Swedo's 17 pt changes in CYBOCs.
   
6. He uses the variety of claimed symptoms to discredit PANDAS but has no pathogenesis for any of the symptoms observed.
   
7. He claims his failure to confirm creates serious doubt about PANDAS -- but it doesn't. It only raises serious doubts about his methodology since he was running a new experiment and did not have a control from the prior experiment.
   

Hope that is clearer as to what is wrong.

 

Buster

[melanie]

I have an orange dog Well yellow Lab but kindof orange, Does that count?LOL

[tpotter]

Really excellent! I totally agree with sending it to the ones below...and I also think you should send it to Kurlan.

 

 

 

Love It.... At least send it to Swedo, Cunningham, Dr. K, Dr. T, Dr. L, Dr. Kaplan, etc. for a good chuckle.

[Fixit]

I got some questions what was wrong with the Kurlan study (by analogy) -- several folks said that recent doctors had used the Zebra's and Horses analogy with them and they'd like some ammunition.

 

In the analogy, the flaws in the "Kurlan" study are:

1. Kurlan selected children who were already heavily medicated (and succesfully managed on meds) -- and thus checking for exacerbations is problematic
   
2. Kurlan broke the blind by informing pediatricians if the strep test was positive. On the assumption that the pediatricians followed the standard protocol they'd put the kids on antibiotics.
   
3. This means that Kurlan was checking whether treated GABHS caused ARF or SC or PANDAS. But we know from multiple other studies that treating GABHS early enough does not lead to ARF/SC.
   
4. Kurlan had sampling theory issues. He defined an exacerbation as one that occured within 4 weeks of a "definite" infection. When he relaxed his criteria he found more correlations. However, this was not in his report.
   
   
5. His kids had no OCD exacerbations in 2 years (regardless of GABHS) -- that is really unusual and certainly makes these kids different from Swedo's 17 pt changes in CYBOCs.
   
6. He uses the variety of claimed symptoms to discredit PANDAS but has no pathogenesis for any of the symptoms observed.
   
7. He claims his failure to confirm creates serious doubt about PANDAS -- but it doesn't. It only raises serious doubts about his methodology since he was running a new experiment and did not have a control from the prior experiment.
   

Hope that is clearer as to what is wrong.

 

Buster

 

So in my ds...i may have let his first couple of streps go on longer than needed, as a first time mom, and never having strep myself, i did not know what it was...then the next sore throat, i thought was just a sore throat....THat was before i would run to the doctor for every blip

 

But i still don't know if ds had ocd...just tics that would remit with abx, like clockwork about 8-10 with pos culture..and 1 1/2-2 years of remits with abx w/o pos culture, but presenting upon visit with some sort of infection....until this last onset, now 1 year..but presented the day before onset at docs with something going on as he didn't feel well...

I just get concernd with concept of having to have ocd...maybe we need to consider being more geneticly predispostioned to ocd or ts or the possible combo

and i wonder since I AM GUESSING...that ocd may be considered more debilitaing than tics, you get a lot more follow up and looking into pandas...as with ts, i guess (some parents don't see it, oh thats just a boy being weird, or thats ts, good luck, do the best you can, now go away)Do you get the jist of what i'm saying???

 

Now ds cam came in at 105..still considered on the parameters of the test i guess...when i spoke to a dan doc in fl yesterday he said it's sill in there...

But ...now with the new info...ds was taking taurine for 3 months leading up to the blood draw...and he was not in exaasperation...

 

Ds has had sensory issues, and adhd,,,,just my diagnosis...because compared to other kids it was just boy stuff....and managabe,just annoying

 

Also just befor onset< this time,....he started to pull hair out of the top of his head and maid a little bald spot.

and this year 1st day of soccer practice,(outside, pollens just starting to rise) i noticed hime going for hair to pull...

we addressed it changing shapoos(dx prescriptoin)...he said it feels like someghing is biting him undere the skin and needs to pull it.

this time he added that and he said it feels like the hair will fall out if he doesn't pull it????

 

But prior to this....if we hadn't progressed this far down...i would say it was just tics..(as things got better on aug, i thought maybe some were ocdish in his abblity to controll it, but it didn't last long enough since we had to discontinue)..and would not want to be excluded from pandas dx,,,we still don't have one Formally....DOes anyone...who can declare that....Drk thinks it,,,,dan from yesterda thinks it(we are seeing him next week)

 

I'm sorry for highjacking thread....

I would love your thoughts, especially buster.

[Fixit]

Humm....just to add....as i look back at ds amino profile....his taurine was high 159...end limit 148???

and i think they added taurine to his aminos?????

just tried to put a call in to varify...as i roll, they are out today and i need to call back!!!!

i'm refering this to the camk test taken just 2 weeks post program ???

[kim]

http://www.neurology.org/cgi/eletters/WNL....1bd10fdv1#40606

 

Streptococcal infection, Tourette syndrome, and OCD: Is there a connection?

 

Gilbert and Kurlan opine that studies similar to those of Schrag et al. have been “limited by our current biologic markers.” [2]However, the problem isn’t with the laboratory tests of GAS but with non-representative patient populations, inappropriate controls and methodology that ignore the basic pathophysiology of post-streptococcal sequelae. Until investigators address these issues, there is no point in trying to decide if they’ll find horses or zebras. They aren’t even hearing hoof beats.

[Buster]

Well, well, well, she speaks...

 

Did you see the incredibly lame response by Gilbert -- not only did he not respond to the criticism from Swedo, but he decides to cite the equally flawed paper by Singer to try to justify his position.

 

A great point in Swedo's paper is that "treated streptococcal infection" does not lead to ARF or SC or PANDAS. It is the untreated strep infection that is the problem.

 

Finally!

 

Buster

 

 

http://www.neurology.org/cgi/eletters/WNL....1bd10fdv1#40606

 

Streptococcal infection, Tourette syndrome, and OCD: Is there a connection?

 

Gilbert and Kurlan opine that studies similar to those of Schrag et al. have been “limited by our current biologic markers.” [2]However, the problem isn’t with the laboratory tests of GAS but with non-representative patient populations, inappropriate controls and methodology that ignore the basic pathophysiology of post-streptococcal sequelae. Until investigators address these issues, there is no point in trying to decide if they’ll find horses or zebras. They aren’t even hearing hoof beats.

[kim]

I thought you might get at least a little satisfaction out of this

 

Let me ask you something. My kids were repeatedly treated with amox. sometimes 3 times hand running. Do you think a stubborn attitude regarding the ability of amox. to clear strep in some kids contributed to an increase in PANDAS situations? Any thoughts on how that would fall into the "untreated," category?

 

It must be very frustrating to understand the ins and outs of all of this and have to read these "lame" studies that grab the headline. Most of us can't see what you do, until you explain. It reminds me so much of the "vaccine info." Parents and medical professionals alike, do the same thing on vax discussion sites. The ones that have the ability, point out why it's FLAWED, yet the general public is led to believe something totally different, time and time again.

 

I know you are in the midst of trying to get your daughter well and helping many others along the way, but someday maybe we will see you with your own blog taking some to task!

 

If you have a chance, please take a look at Hilary's butt kicking response. I think we have another clear example of someone who understands too much, reaching a boiling point. I think you'll relate.

 

http://www.beyondconformity.co.nz/_blog/Hi...nd_big_porkies/

 

OPEN LETTER : Dear Drs Michael Osterholm, Kris Ehresmann and Ed Belangia; None of you get it, do you? You say you “know the idea that the flu vaccine doesn't prevent deaths in the elderly sounds almost blasphemous” and that you “didn't really want to believe it at first either,” but that the new research is “incontrovertible”? The new research is no less “incontrovertible” than the research done between 1960 and 1976, which showed exactly the same - and Dr J Anthony Morris’s honesty, lost him his job in FDA. Can’t nuke the bread-and-butter of all vaccines, the annual flu-vax till ringer! And yes, that’s what was said!

 

Pardon the sarcasm in this post, but I’ve got a thirty year itch that needs a darned good scratch.

[JAG10]

Kudos!!! Swedo's got a sassy side!

I love it!!!!