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Posted (edited)

http://www.oumedicine.com/body.cfm?id=4281

 

The quotes used are by Dr Cunningham, who is doing currently doing research in PANDAS. In this article she discusses molecular mimicry.

 

It states

 

Cunningham would later write that it was molecular mimicry - the ability of the strep antigen to mimic myosin - that can cause some people's immune systems to attack not only the streptococcus but attack their body's own cells. This was important and led the way for recognition of molecular mimicry as a potential mechanism leading to other autoimmune diseases such as Guillain Barre Syndrome, systemic lupus erythematosus and multiple sclerosis.
PANDAS is discussed near the end of the article. She goes on to say,
Antibodies formed against streptococci bind to receptors on neuronal cells and lead to movement or behavior changes. Thus, mimicry between streptococci and brain leads to the dopamine release and the disorder.
Edited by Vickie
Posted

All great information, but daunting! :huh:

 

I guess I was trying to find a "simpler" way to think about and/or explain this whole thing, but there's nothing simple about it. <_< BBB, molecular mimicry, variety of potential infectious agents, co-infections . . . . . . :wacko:

 

I guess if this stuff was easy, the western medical community would've already figured it out themselves instead of making us go through all this research and hypothesizing! :P

Posted

Thanks SF, Mirilina and Vickie -

 

Also, the NIMH website talks about this a bit at http://intramural.nimh.nih.gov/pdn/web.htm

- though that info. is a little old. It is good because it is written in language that I can understand.

 

If you are looking for actual studies, I think the idea of mimicry was from Christine A Kirvan, Susan E Swedo, Janet S Heuser & Madeleine W CunninghamS in 2003 when they studied sydenham chorea. The abstract for this is here

http://www.nature.com/nm/journal/v9/n7/full/nm892.html

but I cannot find a full-text version for free online.

 

 

They went on to study how this mimicry might affect neurological functioning in PANDAS and that 2006 article is available in full text at

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-19.pdf

 

Again - this is my limited interpretation of this work. Buster can be of much more assistance.

Posted (edited)

I do wonder as well what happens to kids who seem to be triggered after they have had vaccinations

 

I know there is still controversy on the role of mercury and other adjuvants in vaccines on neurology, but what about the actual onslaught of the vaccine itself on the immune system in a susceptible (genetic neuro disorders or already "microbe infected" child) ie the immune response generated by the vaccination may trigger something to go "wrong" in a suceptible child, especially when a number of vaccines are given simultaneously?

 

 

that article re the molecular mimicry is very interesting Vickie. Thanks for posting that.

Edited by Chemar
clarifying
Posted

I think you hit the nail on the head!

 

I believe it is the secondary infection/auto-immune response at time of vaccination in conjunction with 'live vaccine' that is extremely dangerous of a child since BBB is already open. My deepest fear, is that is how we get Autism.

 

Just like N1H1. Children didn't die from 'just' N1H1 but did typically when there was a secondary infection or compromised immune system.

Posted

Okay, I was under the impression that PANDAS/PITANDS was the immune system making an antibody(s) in error...ones that it should not even be making, or should be destroying if it is made.....but if it is antibodies that are appropriately made to an antigen on the strep cell (or whatever pathogen) then how the heck can "resetting the immune system" w/ high dose IVIG address that? Once your body resumes producing its own Bcells again, wouldn't they respond in the same way to the infectious agent? There really is no way to insure kids are not exposed to the causative pathogen (although chances of that are better w/ Lyme), most of which are so pervasive in the environment, there's just no avoiding them.

Posted
Okay, I was under the impression that PANDAS/PITANDS was the immune system making an antibody(s) in error...ones that it should not even be making, or should be destroying if it is made.....but if it is antibodies that are appropriately made to an antigen on the strep cell (or whatever pathogen) then how the heck can "resetting the immune system" w/ high dose IVIG address that? Once your body resumes producing its own Bcells again, wouldn't they respond in the same way to the infectious agent? There really is no way to insure kids are not exposed to the causative pathogen (although chances of that are better w/ Lyme), most of which are so pervasive in the environment, there's just no avoiding them.

 

Peglem -

That is a really good question and it is the same question my pediatrician asked me. My son is going to be exposed to strep and other antigens no matter what - so why not just put him on an SSRI to mask the symptoms and get on with life?

 

I guess I am still working out my answer to that. If he needs to be on an SSRI he will be on one, but not until I have made his body as healthy as possible. If IVIG can reset the system, then will the BBB will not be open so we can get on with life without his basal ganglia being attacked? If I can keep him healthy and use anti inflammatories , can we avoid another exacerbation, or at least respond quickly when there is an exacerbation? If I can find out what is causing the problem (strep, mycop, etc) can we use medication to get the offending substance out of his body and keep it away for a while to calm his immune system down?

 

So many questions.

 

We need a book on the parents guide to PANDAS. How about some of the parents who've been at this a while and who's kids are doing well get together to work on that!

 

We see Dr. B this Wed. I hope to get some of these questions answered.

Posted (edited)

If you do IVIG, you at least have a chance that your child will not be exposed again or that the BBB will be closed when they are. Also, if your child can fully recover and stay recovered for a decent amount of time in between exacerbations with the help of IVIG, then another exacerbation post IVIG (if it should occur) hopefully won't be as bad.

 

If it's the strain of strep that caused this all to start, hopefully your child won't be exposed to that nasty strain again.

 

If the root of the problem isn't addresed and your child is technically allowed to stay in an exacerbation that is just covered up with the band aid of an SSRI (which actually worsens some PANDAS kids in the first place), then over time they may contract strep again and they can really be sent over the edge. Not all exacerbations are the same and subsequent ones can be worse and be even harder to overcome. Some have experienced a new exacerbation while recovering from a past one (my son included).It can get get very bad and very scary.

Edited by Vickie

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