Does anyone know the role of glutamate in PANDAS?

[Guest pandas16]

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Edited May 3, 2011 by pandas16

[NancyD]

A while back, I had tried a supplement called Natural D-Hist during allergy season. This product had NAC in it as well as many other natural substances to control allergies/inflammation. On this supplement I felt more anxious and tense than I had ever felt in my life! My tics increased- everything increased. I don't know if this was the NAC or maybe the fact that I was allergic to something in it. Either way my past experience makes me skeptical about Riluzole. (the new PANDAS drug in clinical trials)

 

All of the new research that they are doing on treatment resistant OCD/Tourettes/Bipolar

has to do with a glutamate/immune response. I read on this forum that NAC increases extracellular glutamate levels where as Riluzole does the opposite. Is this true? Do they work oppositely? If yes, I wouldn't be so hesitant to try riluzole. Did you find that if you had a bad experience with NAC you had the opposite experience with Riluzole?

 

 

(I'm still trying to find the thread where I read that it increases extra-cellular glutamate)

[NancyD]

Are you confusing glutathione (an amino acid) with glutamate (a neuro transmitter)?

 

I believe Riluzole is a glutamate blocker. My daughter tried this for 3 months (following the NIMH protocol) and we saw no results until we started pulling her off it very slowly. That triggered full-blown vocal and motor tics and it was not until after we did HD IVIg that the tics started to go away. We had a horrible experience with Riluzole! 

 

NAC is an amino acid and antioxidant that helps to repair oxidative damage in the body. I believe it helps to conserve the body's store of Glutathione, Cysteine, and other Sulfhydryl anti-oxidant resources, which help to rid the body of toxins.

 

I don't know how NAC is supposed to help with OCD but it does for some people. Perhaps there is some interaction with the glutamate. Maybe someone else can chime in.

 

Nancy

[Fixit]

is this the thread?

 

http://www.latitudes.org/forums/index.php?showtopic=10362&pid=87386&start=&st=#entry87386

 

ps...from rereading ..maybe you needed b vitamins to help process...otherwise amonia builds up and creates anxiety...if i got that right

 

pss..remember you need 3x more vit c per dosage of nac...ie 1000mg nac plus 3000mg vit c

 

psss...sorry..nac feeds yeast so that could be a problem too..with your results...again the b form of biotin helps to stop yeast from converting to its fungal form

Edited January 30, 2011 by Fixit

[MomWithOCDSon]

My understanding of the research is this:

 

- Riluzole isn't a "PANDAS drug;" it's actually under study now as an OCD drug, so, presumably, it could assist someone with PANDAS who's presentation includes OCD behaviors. That being said, though, I don't know if what assists OCD might not aggravate tics.

 

- Both Riluzole and NAC are "glutamate agonists," meaning they can reportedly reduce the impact or maybe even amounts of glutamate in the brain. Studies at Case Western Univeristy on kids with OCD (not identified as PANDAS or non-PANDAS OCD) included brain scans highlighted excessive amounts of glutamate in the OCD brain, including the caudate nucleus. Meanwhile, the caudate nucleus is one area of the brain Swedo's research has indicates as being oversized or "inflamed" in PANDAS kids. So is it glutamate that's contributing to the inflammation? Nobody's said that yet, but maybe.

 

- Our DS has been taking NAC for about a year now; I would be hard pressed to tell you that there have been positive effects, but it seems clear there aren't negative ones in his case because he continues to improve overall. His primary PANDAS behaviors are OCD in nature, and he's only exhibited very specific tics (hand clenching, leg dragging) at his most ill stages of an exacerbation. In mild exacerbation or health, he has no tics behaviors at all, though the OCD, subclinical and low clinical, remains a thru-line.

 

- In addition to the NAC, meanwhile, as Fixit has noted, DS takes a time-released B-complex supplement as well as QCB, a quercitin, Vitamin C, Bromelain supplement, so perhaps, if you try NAC again, making sure you also get adequate Vitamins B and C would help?

 

Good luck to you!

[Guest pandas16]

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Edited May 3, 2011 by pandas16

[MomWithOCDSon]

The product that I took had all of that in them. Quercetin, Vitamin C etc. Everything I've read online says Riluzole is an ANTAGONIST and NAC restores extracellular glutamate. Here is the research study that says implies it's an antagonist.

 

http://www.ncbi.nlm.nih.gov/pubmed/18315448

 

Can you send me some of the studies you've read? Isn't an agonist something that increases something else? I'm going to try and find the thread I read here before. The only reason I said "PANDAS drug" is because Susan Swedo is looking at and she's a specialist for kids with PANDAS.

 

If you'd like to PM me with an email address, I'd be happy to send you the research I have regarding glutamate, riluzole and NAC; I may have mispoken or misunderstood the research myself.

 

As for Swedo looking at it, that's cool, and it makes sense being as there's an NIMH drug trial for Riluzole going on right now; that's probably her connection with it, though the trial is actually being headed up by others. The criterion for the trial, though, is an OCD diagnosis, rather than a PANDAS diagnosis. Also, I think it was NancyD's DD who had a negative reaction to Riluzole in that it exacerbated her tics. Maybe a call into the doctor heading the trial would give you some information as to whether or not they accept tourettic OCD kids into the trial? It just leads one to wonder if what might be beneficial for OCD is less beneficial or maybe even detrimental to tics.