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NAC Strikes Again!


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That's so interesting. It caused irritability in our case. And I mean extreme irritability. It just confused the heck out of me when I see the differences in all of our kids. :wacko:

 

Funny. It causes DS to become stuck and repeat the same phrase or comment again and again. He will tell the same story six times within an hour and seems to be unaware that he has told it previously. Only happens when he takes NAC. We have tried it a few different times. No positives at all, plenty of down side.

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Wow - I didn't want to reply because I didn't want to be Debbie Downer - but I've tried NAC twice on my DD (the one with the MTHFR/methlyation issue) and both times, she got wicked moody, bi-polar, would turn on me in a flash only to be remorseful and fall apart minutes later. It was like PMS in a pill. I have no idea why she reacts this way - it seems like a significant clue. But I haven't been able to figure out why. I once thought it might be breaking down a biofilm and it was causing some sort of infection/herx thing. But the puzzle pieces didn't fit quite right. I know SAMe, which is "supposed" to do wonderful things, can cause a negative reaction in some people. I can only assume this is true for NAC as well. But if anyone has any ideas, would love to explore them.

 

 

lynn- I saw "hmmm" issues about a week into using it the first time and was certain it was the NAC by the end of the second week. Once we stopped, things got better. The second time I tried it a few months later - for allergies/congestion - I saw bad mood issues within a day (maybe because I was looking for any negatives) and it was enough to turn me into a chicken and decide the bottle belonged in our "tried but didn't work for us" cabinet (you know - the one filled with stuff you spent $$ on and can't bear to just toss, but will probably never use again ever).

Edited by LLM
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Lynn, our results were seen within a day or two. We stuck it out for at least a week. Maybe more. I think "PMS in a pill" is a great description for our experience. It was crazy!!! She returned to her normal self within a day or two of stopping it. With that said though, I know some people have fantastic results.

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Could you tell me about how long it took to get results (whether good or bad) from NAC?

 

First, I'll say that I was aware that some people had some negative experiences with NAC, but until posting this thread, I didn't realize that the "negative" was as deep as it was. Very interesting and kicks up in me a whole host of questions about how all the pieces might or might not fit together, including what role methylation may play in how NAC does or does not impact the brain.

 

At one point in time, thanks to a paper LLM found somewhere, we were theorizing that perhaps some of the negative behaviors seen with use of NAC might be its potential as a biofilm buster, and the release of fresh microbes or toxins as those biofilms got busted like a bad jail cell. ;) But somehow I don't think that would account for all these stories!

 

Lynn, on our end, NAC has been only helpful, but I do think it took a while . . . we had to build up the dose first, and then I'd say it was probably 4 or 5 weeks at full dose before we saw the positive impacts. Why my DS and not the others? Not a clue!

 

Frankly, reminds me of a story from several years ago. A friend of mine had lived most of her life significantly overweight, and she had tried pretty much every diet known to man, though she'd not gone through the lap band or stomach stapling or any of those surgical options yet. No matter what she tried, though, she couldn't seem to drop the weight, and she wasn't a "cheater" either; she'd start a new diet and stick with it, religiously. Anyway, her dad passed away somewhat unexpectedly, and as an only child, she was left with a sizable inheritance. She decided to take a chunk of her inheritance and set up a week-long, million-dollar-work-up appointment at the Mayo clinic for herself. So she went up there and they poked and prodded and tested her within an inch of her life, and the test results came back with only a single, ringing descrepancy; she was startling low in terms of zinc levels in her blood. So, they put her on zinc supplements and gave her instructions for a high-fiber, low carb diet that, honestly, she'd tried previously to no avail. Well, she tried it again, and this time not only did the weight melt off, but she's kept it off for over 5 years now.

 

All for want of some zinc! How many of our kids are the same way? There's some "key" to why they heal or fail to heal the way they do, and we just need to find it? :blink:

Edited by MomWithOCDSon
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All for want of some zinc! How many of our kids are the same way? There's some "key" to why they heal or fail to heal the way they do, and we just need to find it? :blink:

 

Exactly! I was thinking this afternoon about viruses and how my kids don't react to them, yet some kids do. One researcher theorized that it's possible that the immune system just learns to over-respond at the first sign of infection, regardless of the specific invader, and produces faulty t-cells that think they're Rambo, shooting everything in sight. The immune system is far too complex for me to know how likely this theory is, but something about it didn't resonate with me. If this were true, why did some kids have PANS responses to viruses and other bacteria (e.g. lyme) and not others?

 

One other theory is that if the body doesn't have a full reservoir of ammunition - full supply of zinc, proper methylation, no excess of certain things or shortages of others - it diverts precious resources to the front line battle of infection and leaves the home fires that are normally barely fed feeling very deprived of vital nutrients. The nutrients needed for seratonin, dopamine, glutathione... And if you're really deficient, you not only end up short here but also too short-supplied to fight an effective battle against the infection. So you have a two-front war on your hands.

 

Maybe both theories have an element of truth to them. Maybe individual responses are due to the things our kids are putting into their bodies - or not putting in - and their gut health. Maybe genetic mutations play a role in how effectively or ineffectively their bodies use the supplies they do have. Maybe these things are the precursors that then lead to a full Pandas explosion and misbehaving T-cells down stream. IDK. I do know that two years ago, I'd have never, ever contemplated taking my son off abx. I can now see that as a distinct possibility once we're out of the lyme woods and go a period of time with full remission. My DD may be off them even sooner.

 

Nancy - really interesting about your friend and the zinc. Greenblatt feels that anorexia can be driven by a zinc deficiency that makes food lose its taste. This changes a person's eating habits, which then leads to additional nutritional deficiencies. Fascinating to think something as innocuous as zinc can have such broad implications, for eating issues as well as pyroluria/brain fog/mood.

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I'm just curious if those who did not find NAC helpful would describe their children as on the verbal side, very social.....kind of anti-ASD?

 

Yes - very!

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I saw NO positive change with NAC for my DD who is EXTREMELY verbal (always has been,speaking in full sentences as baby when her peers could only say a few words). Not sure if it made her "worse" since she was a mess back then anyway.

 

We also tried Riluzole for OCD before we knew in was PANS. (well that and a laundry list of other meds,including Risperdal which made her start lactating!!)

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-25.pdf

 

DD had been suffering for 11 years, the ONLY thing that helped was lVlG.

 

Just found out she is positive for 2 copies of MTHFR. Strongly advise PANDAS kids to be tested for this. I spoke with Dr. T about it the other night, he said he is going to start adding it to his labwork!

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I'm just curious if those who did not find NAC helpful would describe their children as on the verbal side, very social.....kind of anti-ASD?

 

Yes - very!

 

Good call, JAG! Okay, so if that's a defining characteristic,then we can probably find others, as well. Hopefully there'll be more "pro-NAC" and "NAC-bad-response" forum members chiming in here so we can get a better, though anecdotal, measure of how "true" this paradigm might be.

 

If you're right, my DS would fit into the 180-degree of LLM's kids (and yours?)? While very verbal, my DS is not highly social, and never has been. He prefers one or two people as opposed to crowds (might get that from me, as I'm the same way), and his sociability surrounds co-activity (separate, but in the same space and at the same time) around a common interest, more so than any kind of team-oriented activity. And in the depths of exacerbation, he was tagged with both Asperger and PDD-NOS labels by some docs who'd never seen who/how he is outside of extreme exacerbation.

 

So, what is that about? Methylation? Alright, LLM . . . you're about as much of a methylation expert as I think we may have among us at this point. What about NAC and its glutamate modulating properties might be "pro" given under- or over-methylators? Based on Dr. Pfeiffer's criteria, it seems most likely that my DS is an under-methylator. And if I recall correctly, don't your kids fall more accurately under the over-methylator side of the equation?

 

Maybe this is part of the difference in the way our kids are reacting to NAC?

Edited by MomWithOCDSon
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My DD, who has the horrible NAC response, is heterozygous MTHFR C677. She is very much an under-methylator.

 

So in this respect, our two kids have something in common. But NAC has multiple properties - as a glutamate modulator, a glutathione precursor, a biofilm thinner...and who knows what else. NAC can be both a sulfur donor and a methyl donor.

 

I know DD has no problem with sulfur donors. She's taken bactrim - high in sulfur - with no issue. It's ironically one of the few abx she's not allergic to. Both of our NAC trials were done before DD was taking methylfolate/methylB12. So the last thing she needed at that point in time was more methyl groups that couldn't be recycled from homocysteine into methionine. Maybe if we used it now, it would go better. Just speculation and since DD is good, not going to experiment. Just thinking out loud.

 

The other possibility is our kids have a difference in another pathway. I suspect DD has at least one other roadblock in her methylation cycle - she seems to need the extra help of tryptophan to make enough seratonin. Or maybe your DS just eats better than my DD and he gets more of what he needs from his diet. Maybe DD has a deficiency that makes NAC not work well for her. Just tossing spaghetti at the wall to see what sticks.

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Well, LLM and MomwithOCDson, you are looking at this at a much more microbiological level than I what I was speculating about. I suppose I was thinking about the article's point about helping kids on the spectrum. ASD kids tend to be less verbal and/or less social. Then I was thinking about how over the years of reading posts, we could broadly divide our pandas kids into 3 categories: 1) those with ASD that improves with pandas treatment, but characteristics remain, 2) those who when in exacerbation could look ASD but after pandas treatment have no ASD characteristics, And 3) those who no matter how bad of an exacerbation from pandas never would be suspected of being ASD.

 

 

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Well, LLM and MomwithOCDson, you are looking at this at a much more microbiological level than I what I was speculating about. I suppose I was thinking about the article's point about helping kids on the spectrum. ASD kids tend to be less verbal and/or less social. Then I was thinking about how over the years of reading posts, we could broadly divide our pandas kids into 3 categories: 1) those with ASD that improves with pandas treatment, but characteristics remain, 2) those who when in exacerbation could look ASD but after pandas treatment have no ASD characteristics, And 3) those who no matter how bad of an exacerbation from pandas never would be suspected of being ASD.

 

I have dd8 who is a #3 and dd12 who is a #2. Only dd8 has had the MTHFR testing and is positivie for one copy C677t. I haven't had dd12 tested yet, but she is positive for the Factor V Leiden mutation which commonly occurs with the other. I'm not sure where or if the MTHFR thing fits into this.....I guess I was thinking more along the lines of left brain/right brain differences.

 

You know I'm an SLP.....all I can say is this: after years and years of trying all these different prescription medications and supplements with dd12, I've noticed that the ones that are SSRIs or akin properties to antidepressants HAVE AN IMPACT ON LANGUAGE AND SOCIALIZATION. When she was 6 (before things got really bad with her) we tried St. John's Wart based on something I had read in Dr. Amen's book about hyperfocused ADHD and it clearly impacted her verbally with regards to conciseness and fluency of message, vocabulary choice, and overall flow of conversation. The social piece followed right along with that. I remember being curious about why "antidepressants" would impact her this way.....she wasn't depressed by any stretch of the imagination, she was very, very happy all the time. I've seen similar results with her with straterra, 5-HTP, and zoloft......but it always came with some negative that was just trading one problem for another. Amen calls these meds "anti-stuck meds" rather than anti-depressants.

 

Now I can't get her to shut up :wub:

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