Antibodies to strep throat bacteria linked to obsessive compulsive dis

[T_Mom]

My sister sent the article to me. She received it via google alerts, which I did not even know existed. You type in key words that you are interested in and you get an alert if any of those key words are posted on the internet.

Colleen

 

I am signing up for those Google alerts right now! Thank you!!!

[kim]

lurker,

 

In this case they were immunizing trying to create the autoimmune response. They immunized with the component of strep suspected of causing the antibody formation that would attack brain tissue in predisposed animals. That is where the mouse model comes in. Read this, maybe it will help you understand why I'm wondering about the mouse and may help you see how some of these mouse models work. Probably better than listening to me ramble trying to get it "just right" which I'm not capable of anyway As always, this is just my best guess.

 

Read this article on a mouse that was engineered to study Sjogren's.

 

http://www.innovations-report.com/html/rep...port-35072.html

 

By knocking out a single gene in mice, immunologists at Duke University Medical Center have mimicked a little-understood autoimmune disorder in humans. In the puzzling disorder, called Sjögren’s syndrome, the person’s tear and salivary glands are affected, causing dry eyes and mouth, as they are damaged by an attack of the person’s own immune cells.

[kim]

Tami,

 

In addition to above, wouldn't it be wonderful if they could develope an immunization that would protect people with a predisposition (i'm not going to say genetic, because it may not be strictly genetic, it may be exposure to something that is causing the abnormal immune response too) ? If a vaccine could be developed that safely created immunity without the "self" attack, well it might be one vaccine that I would be willing to take! That's not how immunizations work though. They are costly to create. Once one is developed, the more people immunized the bigger the profit. Do you think I would expect every child out there to be immunized against strep with a vaccine that is supposedly safe in a PANDAS situation so that my kids and myself would be protected? NO. Just because the design was safer for us than the natural illness, I wouldn't expect it to be safe for everyone. Also, how do we know what might step in and replace strep A if we tinker with another bacteria? Just some random thoughts here.

There have been big problems with attempts to make a vaccine for this in the past. This research may help them overcome some of those obsticles. Can't help but to wonder if that plays into the research? I may be just a tad cynical when it comes to vaccines tho

[lurker]

Again, I still don't understand. What's the difference between shooting inactivated streptococcal vaccine into something while TRYING to cause an autoimmune disorder and shooting inactivated streptococcal vaccine into something and ACCIDENTALLY causing an autoimmune disorder? (Don't many vaccines use inactivated virus or bacteria?) Granted, they purposely used vulnerable rodents, but who is screening our children to profile them for such vulnerabilities? I still think a strep vaccine sounds more likely to cause PANDAS than prevent it. And what about the children who had the ckn px vaccine and are now more likely to get shingles. What if the strep vaccine prevents typical manifestations of strep throat and children are more likely to get, well, PANDAS?

[thereishope]

The government will eventually pass a strep vaccine in order to "protect the greater good". They will go on to say that all vaccines run the chance of a rare side effect but look at the devastation that might occur if, for example, a polio vaccine wasn't invented. (Eventhough the oral polio vaccine ended up giving some people polio...Anyway...). They will have a whole speech prepared for anyone who says it's bad idea.

 

I don't think they should have a strep vaccine. I DEFINITELY know no PANDAS child should get a strep vaccine.Do you know if the one they have been researching would have to be readministered more than once? The # of shots these kids are getting is out of control and the fast rate they are invented then given to the public is ridiculous. Might I say one word...Gardasil.

 

Let's just make sure we all keep a copy of this study on hand to show if they ever say we must get our child vaccinized against strep.

[mom md]

They have been working on a strep vaccine but as Dr. Cunningham said..."the more we learn about this vaccine the more we fear it." My guess is it will never happen as they worry it will unleash PANDAS, necrotizing faciatis, etc. They are all very aware of the possible ramifications of a vaccine and are too frightened to give it.

[lurker]

I am too cynical. My guess is that it will happen because this one could be so profitable. Look at all the school and work hours that are lo$t when a child is infected, and strep is pesky because they can get it more than once. We live in a world where some people give their toddlers and preschoolers tylenol to mask their fever so they can drop them off at daycare and go to work.

[Buster]

If you are interested, you can find out about the SJL/J mouse at http://jaxmice.jax.org/strain/000686.html

 

These mice are engineered to have elevated circulating T cells and are highly susceptible to experimental autoimmune encephalomyelitis (EAE). EAE is thought to be similar to multiple sclerosis.

 

Essentially, these are mice who have problems with the blood brain barrier and have really active immune systems. So when they are innoculated with GABHS, they produce a lot of antibodies and these antibodies end up crossing the BBB.

 

 

Regards,

 

Buster

 

Further investigations in this strep-triggered, autoimmune mouse model of PANDAS will promote the discovery of more effective interventions for these disabling disorders and guide the development of robust prevention strategies."

 

 

Maybe a mouse that is known to be prone to an autoimmune response that was immunized with GlcNAc? They call it an autoimmune mouse model.

[kim]

thanks for that Buster.

 

I'm seeing where it looks like the peptidoglycan in the cell wall was not what was found to be cross reactive. I just saw where Nancy posted the a link for the study.

 

Looks like the strep antigen was group A b-hemolytic streptococcus matrix (M) protein?

 

Since Cunningham was the one who found reactivity to GlcNac, I wish they'd toss her that poor little mouse!

 

I do hope this study provides some of the answers that are so badly needed.

[Buster]

Just as a reminder, the new paper is a followup to work by the same author in 2004

 

http://www.jneurosci.org/cgi/reprint/24/7/1780

 

that was entitled "A Murine Model for Neuropsychiatric Disorders Associated with Group A -Hemolytic Streptococcal Infection" that heavily cited Kirvan/Cunningham's work on GlcNAc.

 

what was different here was that the authors transferred the created antibodies from immunized mice into non-immunized mice and showed that the transfer of serum caused the movement/behavior issues.

 

The push back on the paper will be similar to the prior paper that "mice aren't people", but wow, it's very good work and very consistent with the findings of Kirvan and Cunningham. It would be fascinating to know whether the innoculated mice have an antibody similar to 24.3.1.

 

Regards,

 

Buster

 

 

http://www.eurekalert.org/pub_releases/200...s-ats081009.php

 

Maybe we are finally, once and for all, going to get this "controversial" disorder recognized!

 

Colleen

[michele]

Buster or others who have done research,

My son had strep at 13 months, afterwards a dramatic change and chorea and tics and then later OCD and tics with other exposures. So why would Latimer feel it may be TS or OCD? Doesn't this study prove that predisposition to autoimmune ( I have arthritis) and predisposition to anxiety disorders and mental illness( my husband's side) can be a precurser to PANDAS. He had positive Kinase 11 which were in the low PANDAS range. Why would she be confused to if it was PANDAS? He had a long history waxing and waning with illness for 7 years after illness. Now he isn't responding well to steroids, they seem to aggravate his symptoms, does this prove it is not PANDAS? Did you kids all do well with steroids and how long did it take? We are on day 21. Sometimes he seems easier, othertimes agitated, hyper and raged. The anxiety and tics are increased. The next question, what do we do now? I mean we meet every symptom of PANDAS. The longer it continues it seems to be going into ASD with tics and anxiety. If Latimer is the best to see, she was not convinced so what or who now? She sugested the OCD study at NIMH but it is alot , 11 visits in 6 months, possible placebo, and who knows about the drug side effects anyways? They want you stay on current meds and that is alot of meds for a young boy age 7. Just wondered if you had any opinions?

 

Michele

Just as a reminder, the new paper is a followup to work by the same author in 2004

 

http://www.jneurosci.org/cgi/reprint/24/7/1780

 

that was entitled "A Murine Model for Neuropsychiatric Disorders Associated with Group A -Hemolytic Streptococcal Infection" that heavily cited Kirvan/Cunningham's work on GlcNAc.

 

what was different here was that the authors transferred the created antibodies from immunized mice into non-immunized mice and showed that the transfer of serum caused the movement/behavior issues.

 

The push back on the paper will be similar to the prior paper that "mice aren't people", but wow, it's very good work and very consistent with the findings of Kirvan and Cunningham. It would be fascinating to know whether the innoculated mice have an antibody similar to 24.3.1.

 

Regards,

 

Buster

 

 

http://www.eurekalert.org/pub_releases/200...s-ats081009.php

 

Maybe we are finally, once and for all, going to get this "controversial" disorder recognized!

 

Colleen

[pandas2boys]

Buster or others who have done research,

My son had strep at 13 months, afterwards a dramatic change and chorea and tics and then later OCD and tics with other exposures. So why would Latimer feel it may be TS or OCD? Doesn't this study prove that predisposition to autoimmune ( I have arthritis) and predisposition to anxiety disorders and mental illness( my husband's side) can be a precurser to PANDAS. He had positive Kinase 11 which were in the low PANDAS range. Why would she be confused to if it was PANDAS? He had a long history waxing and waning with illness for 7 years after illness. Now he isn't responding well to steroids, they seem to aggravate his symptoms, does this prove it is not PANDAS? Did you kids all do well with steroids and how long did it take? We are on day 21. Sometimes he seems easier, othertimes agitated, hyper and raged. The anxiety and tics are increased. The next question, what do we do now? I mean we meet every symptom of PANDAS. The longer it continues it seems to be going into ASD with tics and anxiety. If Latimer is the best to see, she was not convinced so what or who now? She sugested the OCD study at NIMH but it is alot , 11 visits in 6 months, possible placebo, and who knows about the drug side effects anyways? They want you stay on current meds and that is alot of meds for a young boy age 7. Just wondered if you had any opinions?

 

Michele

 

Have you consulted with Dr K?

[michele]

I did do a phone consult last year. He wanted local Dr's to treat with steroids but none would. We have never been to see him in person. It seems everyone else here is getting results with steroids and doing IVIG or PEX and getting better after a couple epsiodes but six and a half years later we are in the same place. Maybe this is TS and ASD with immune sensitivity and anxiety and I just need to accept it , treat the symptoms and move on. If it was true PANDAS I guess Latimer would have been more on board. I really was praying for a positive response.

 

Michele

 

 

Michele

Buster or others who have done research,

My son had strep at 13 months, afterwards a dramatic change and chorea and tics and then later OCD and tics with other exposures. So why would Latimer feel it may be TS or OCD? Doesn't this study prove that predisposition to autoimmune ( I have arthritis) and predisposition to anxiety disorders and mental illness( my husband's side) can be a precurser to PANDAS. He had positive Kinase 11 which were in the low PANDAS range. Why would she be confused to if it was PANDAS? He had a long history waxing and waning with illness for 7 years after illness. Now he isn't responding well to steroids, they seem to aggravate his symptoms, does this prove it is not PANDAS? Did you kids all do well with steroids and how long did it take? We are on day 21. Sometimes he seems easier, othertimes agitated, hyper and raged. The anxiety and tics are increased. The next question, what do we do now? I mean we meet every symptom of PANDAS. The longer it continues it seems to be going into ASD with tics and anxiety. If Latimer is the best to see, she was not convinced so what or who now? She sugested the OCD study at NIMH but it is alot , 11 visits in 6 months, possible placebo, and who knows about the drug side effects anyways? They want you stay on current meds and that is alot of meds for a young boy age 7. Just wondered if you had any opinions?

 

Michele

 

Have you consulted with Dr K?

[peglem]

I did do a phone consult last year. He wanted local Dr's to treat with steroids but none would. We have never been to see him in person. It seems everyone else here is getting results with steroids and doing IVIG or PEX and getting better after a couple epsiodes but six and a half years later we are in the same place. Maybe this is TS and ASD with immune sensitivity and anxiety and I just need to accept it , treat the symptoms and move on. If it was true PANDAS I guess Latimer would have been more on board. I really was praying for a positive response.

 

Michele

 

You sure are in a frustrating position. I know you've been through a lot and have been pursuing help for your child for a long time and keep coming up empty. I know, for me, Dr. K and Dr. Latimer are out of the question, they are too far away(I'm in AZ) and I just cannot afford $300.00 for a phone consult that likely will not lead to any treatment because why would local doctors be willing to respect Dr. K's advice over local specialists (well respected ones)? Forgive me for not remembering, but I wondered if you have seen an immunologist or rheumatologist? It seems like if you could maybe approach this from a more mainstream direction, you might wind up with the same treatment- y'know, a rose by any name...

[P_Mom]

Michele,

 

Sorry things have been so hard. My son started with his first episode at almost 3 years old (unrecognized), then the bad episode at almost 5 that led to his diagnosis of PANDAS that took about 1 year. So, all in all, I believe he has had it for 4 years, ATLEAST!. He was also keeping steady with the symptoms.....waxing and waning of tics, etc. Nothing as severe as after strep. He could have qualified for a Tourettes diagnosis....all you need are motor and vocals for 1 year....he met it. Ask them what causes it....???????

Anyway, he seemed to be slowly progressing....tics, ocd, anxiety, temper outbursts, etc. you know the routine. All the while on preventative antibiotics. Anyway, the first time we did a steroid burst 1 year ago, we didn't see much of a change, well, if we did, it was worse...he was so hyper and bouncing off the walls....don't know why. This year, well, just last month, we tried it again and got remarkable results....almost NO symptoms...this was after 5 days of 30 mg steroids. Results were seen by day 8. There were no negative results like last time....just great gains...I don't know why. If I were you, I would wean my child off all the meds he is taking. (except the antibiotic, and with Dr. supervision) After that, I would wait a bit to be sure he is all clear of the meds, then I would try the steroid burst again. The meds do not seem to be helping, and, there are several reports of SSRI's etc. making PANDAS kids worse. I feel these meds MAY be causing him to be worse and/or interfering with the steroids. We have never given my son anything other than antibiotics...and then the 2 steroid bursts. I don't know if you will get the same results....I just wanted to suggest that to you. I wouldn't give up yet on the PANDAS diagnosis.

 

Hope this helps.

 

Kelly