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Califamily

Has anyone tried GlcNac?

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At the PANDAS parents conference in SF, Dr Cooperstock talked about GlcNAc being important in PANDAS and that GlcNac antibodies were formed. I am assuming this is one of the papers he was referencing?

 

Antibody-mediated neuronal cell signaling in behavior and

movement disorders

 

GlcNAC has many potential biologic functions as treatment (and scary as I couldn't tell if from the paper below it was good or bad for candida), and its a complex issue. See paper below

I came across this paper and it is somewhat mind-boggling all of its functions!

N-Acetylglucosamine Functions in Cell Signaling http://www.hindawi.com/journals/scientifica/2012/489208/

This is highly speculative, but I was wondering if it might briefly block the auto-antibodies while it remains in the circulation. Have any families have tried it? I am nervous as I think the supplement could also cause a chain of reactions?

 

There is a supplement called N-A-G

N Acetyl Glucosamine that I am talking about. Can't answer anything else, just curious if anyone has tried it?

 

 

 

 

 

 

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If anyone has further comment on this, or tried this to good/bad/no effect, please PM me. I find myself reading non-stop on-line, early in our PANDAS journey...

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http://www.rtmagazine.com/2014/06/key-step-toward-safer-strep-vaccine/

Key Step Toward a Safer Strep Vaccine

Key Step Toward a Safer Strep Vaccine
Key Step Toward a Safer Strep Vaccine
Key Step Toward a Safer Strep Vaccine
Key Step Toward a Safer Strep Vaccine

 

If you click on The findings within the article you can see where they are looking at a way to stop the body from responding to the GlcNac within the strep. The diagram is helpful.

 

 

http://www.jimmunol.org/cgi/content/meeting_abstract/190/1_MeetingAbstracts/42.14

Modulation of autoimmune diabetes by antibodies specific for N-acetyl-D-glucosamine (P4026)

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Can anyone help me understand?

 

(1) NAG helps MS due to preventing reproduction and activity of abnormal T cells.

 

So, would we call it an immune modulator in the case of MS?

 

(2) with PANDAS, NAG may be at least one thing that the immune system attacks because it thinks the NAG is strep.

 

So, NAG would be a bad supplement because it would stimulate the immune system to respond?

 

 

Edited to add: I was reading more today and came across an interesting section of a Yasko document (talking about autistic behavior and excitotoxins). It refers to an immune attack on strep as also attacking NAG (as well as n acetyl galactosamine; collectively, the GAGs) in the GI tract. She says the GAGs would need to be replaced and sulfated. I'm not even sure what I think about Yasko, but this particular article connected a few dots in ways that make intuitive sense to me.

Edited by jan251

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Jan,

Now that is amazing. I just googled "Yasko shedding of the gags." I wanted you to see where my first thought process along these lines came from (from many years ago!). When I went to post it, I saw your edit. For anyone else interested in this topic, the information that Jan and I are referring to is on page 8 & 9 here http://www.dramyyasko.com/wp-content/uploads/2011/08/The-Role-of-Excitotoxins-in-Autistic-Type-Behavior.pdf which she has inked to above

 

Did you see, in the Demetriou article: underling mine

“This sugar-based supplement corrects a genetic defect that induces cells to attack the body in MS,”

I'm going to find the full published study. It also talks about Vit D and some other things that are interesting.

Edited by kim

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That is funny that you were thinking of this Yasko article. I don't even remember what google search terms turned it up but there's a lot in there.

 

I think my kiddo has a problem with dairy but I can't prove it yet. So I was interested in that aspect of the article. Mostly I just don't know what to do with this information. It just so happens that I started ds on MSM last week and he has seemed happier, so I wonder about sulphur....

 

I did see that sentence about the MS genetic defect though I want to re-read it in the article.

 

Thank you so much for posting! I have so much to think through - need to make a list of questions for the immune doc.

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I can't edit my new post so I will add here. One of the intriguing ideas for me was this bit about NAG in the GI tract. For my ds, there is a significant GI issue.

 

Eta, I'm full of probably stupid questions, but is glucosamine sulfate the same as glcnac that has been "sulfated"?

 

Ok now I'm coming up on your old posts, Kim. Thanks for those, especially this thread

http://latitudes.org/forums/index.php?showtopic=5703&page=2

 

 

In fact common pharmaceutical agents may inhibit acetylation. The presence of salicylic acid inhibits Glucosamine-6-phosphate acetyltransferase, and at very low concentrations salicylic acid also inhibits the formation of acetyl-CoA by acetyl coenzyme A synthetase thereby preventing the conversion of Glucosamine-6-phosphate to N-acetyl-D-glucosamine-6-phosphate9.

 

In addition to interference of acetylation by common active agents, certain diseases and conditions have been documented in which the N-acetylation of the amino sugar is relatively deficient10 11. N-acetyl-D-glucosamine, as an acetylated version of glucosamine should be spared such regulatory ordeals.

 

Edited by jan251

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Jan,

 

So sorry to read about the situation with your son. He's very lucky to have a mom who is willing to roll her sleeves up and dig in like so many others on these forums.

When I metioned the genetic defect, I wasn't thinking that there was nothing that could be done to support that. What I was wondering is if some people have a weakness, defect or just overload from an unresolved infection/virus etc. where they are unable to replenish the GlcNAc within their own body?

I know what you mean about not knowing what to do with the information. I had the same concerns that others have mentioned. Could it feed yeast, long terms effects, purity of the product, how much would it really take, would it work in the case of a true blue autoantibody. I was really only a bystander on the PANS/PANDAS forum. I never saw a child wake up a different kid, but....I did wonder what a weakness in sulphur met. or glycosylation could do with out the creation of autoantibodies crossing the BBB.

I got to the point where I felt that I was trying to unravel a huge ball of yarn with boxing gloves on (no expertise in chemisty or biology) . I think what is needed is a little GlcNAc added to the ole pitre dish. It just seems a shame that there isn't some guidance with this supplement.

 

I agree about the GI and bladder protective effects being interesting!

Edited by kim

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When I metioned the genetic defect, I wasn't thinking that there was nothing that could be done to support that. What I was wondering is if some people have a weakness, defect or just overload from an unresolved infection/virus etc. where they are unable to replenish the GlcNAc within their own body?

 

My ds has plenty of unrelated genetic defects, and considering the rest of his medical and developmental history, a defect that had an end result affecting the nervous system would not be unsurprising. In fact, discovering such a thing (or at least the appearance of such a thing, along the lines of the MS defect mentioned) that could possibly be remedied, might be quite a boon, actually.

 

I got to the point where I felt that I was trying to unravel a huge ball of yarn with boxing gloves on (no expertise in chemisty or biology) . I think what is needed is a little GlcNAc added to the ole pitre dish. It just seems a shame that there isn't some guidance with this supplement.

 

This is why I'd love to hear experiences of others with glcnac...

 

I think that if I can heal the gut (very long story), maybe, just maybe I can fix the OCD.

Edited by jan251

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