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Posted

I recently joined a pyroluria forum and someone posted about NAC as a biofilm buster. I did a little digging and found this:

http://www.wellnessresources.com/studies/entry/n-acetyl_cysteine_reduces_biofilm_formation

 

http://www.biofilmcommunity.org/f5/helicobacter-pylori-biofilm-nac-pretreatment-clinical-trial-results-71/

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC169071/

 

Anecdotally, I had started DD on NAC about a month ago for her OCD. She deteriorated. I was worried about NAC feeding yeast (something else I had come across) and even tho I didn't see silliness or hear complaints about itching, I tapered off it. Now I'm wondering...

 

We have always focused on her gut - she suffers from GERD and eating issues. Anyone else have any experience with NAC?

Posted (edited)

DD has been taking NAC for a few years. She takes 1200 mg bid. She used to get monthly NAC/Glutathione IVs for ~ 2 years 8 years ago.

 

The IVs healed her severe colitis. At the time she was on a highly restricted diet and could eat very little. She was sensitive to almost everything she put in her mouth, except for fruits, vegetables, and meat/poultry. After the IVs she could eat almost anything as long as it was dye free.

Edited by NancyD
Posted

Interesting. 2 years ago before lyme/bart when I thought it was PANDAS I had my son on supplements for his tics. They were stable, just barely, but I decided to add nac. His tics went crazy. I thought it was a methylation problem but it could have been busting biofilm and spilling. Maybe makes sense now.

Now when using GSE for cysts and biofilm, I see similar tics, just not quite as intense as we go along.

Posted

Ok, upon further reading, NAC, like chlorella, has 1 thiol (part of it's molecular makeup)- meaning it is a mercury magnet but doesn't have the 2 thiols required to make it a strong chelator. 2 thiols make a pincer grasp onto the mercury. 1 thiol may move mercury but not necessarily bind to it long enough for excretion.

 

So if mercury is a concern, it wouldn't be a good option. I guess we're heading for a hair test on DD before we go down this path.

 

BUT - if someone has mucus issues and not much issue with metals, NAC may still be a good option.

Posted

So questions, does KPU by nature imply a mercury problem? Is mercury the only thing that will take the place of zinc? Or any metals? If you take NAC and don't react poorly, would this imply that there is not a mercury problem?

 

If mercury is a problem would you not want to take NAC because it moves it around but doesn't bind it? What if something else is binding it?

 

I'm trying to catch up but I'm horribly behind! I could come up with more questions but these are the ones that came to mind. dd8 is pushing through her KPU treatment. She is managing pretty well now on 3 CORE pills after a week. I am concerned I'm not detoxing her well enough but trying everything I can. Hoping I'm not screwing her up by not doing it right. She is taking NAC to help produce more glutathione. I haven't noticed anything negative at this point.

 

Susan

Posted

So questions, does KPU by nature imply a mercury problem? Is mercury the only thing that will take the place of zinc? Or any metals? If you take NAC and don't react poorly, would this imply that there is not a mercury problem?

 

If mercury is a problem would you not want to take NAC because it moves it around but doesn't bind it? What if something else is binding it?

 

I'm trying to catch up but I'm horribly behind! I could come up with more questions but these are the ones that came to mind. dd8 is pushing through her KPU treatment. She is managing pretty well now on 3 CORE pills after a week. I am concerned I'm not detoxing her well enough but trying everything I can. Hoping I'm not screwing her up by not doing it right. She is taking NAC to help produce more glutathione. I haven't noticed anything negative at this point.

 

Susan

This is only my conjecture - I haven't done nearly enough reading to have anything figured out and every day I seem to go "Aha!...oh, wait.." So take this only as my understanding this moment in time....

 

Based on the people on the Yahoo Pyroluria forum, they don't seem to focus on mercury, tho some are familiar with Dr K and detox. So I'm guessing the two don't automatically go hand in hand, or else these people don't realize they have a mercury problem. I wouldn't automatically assume your DD has the issue but if it haunts you, you might want to read up a little on metals testing. I know little about it - have only gleened that hair testing is preferable to urine testing but couldn't tell you why. Like lyme and Pandas, its something where testing is considered indicitive but not reliable (oh gee - another area to mess with your kids' health in the dark without a flashlight).

 

As for taking NAC - I don't know how strong a binder it is. NAC + cipro has been found to be a really good biofilm buster (the research was to study films on medical equipment, not in people). But I think any film busting protocol had better come with some sort of binding agent - either bentonite or charcoal - something known to bind the metals strongly. From what little I as an art major understand, chlorella and NAC are weak metals binders, molecularly not strong enough to hold on to mercury all the way through to excretion. Whether it's strong enough to get it to the gut, where clay could keep it, IDK.

 

If you're not seeing any negative from NAC, maybe there's no metals problem. Or maybe the dose is so low it isn't doing much to move the mercury. Or maybe you think you're seeing things that are lyme but are actually metals symptoms...I don't know enough to begin to speculate.

 

From what I understand about Cutler's chelation protocol - and that is very little - you're not supposed to chelate every day or every other day. At most, you do it every weekend and give the body time in between to rest. But when you do chelate, he's adamant (and that's putting it mildly) that you need to give the chelator every 4 hours (if DMSA or ALA) or 8 hours (if DMPS), even in the middle of the night, or you'll feel like crap. He feels Dr K's notion that the body will drop mercury when you add zinc is laughable. He feels it's the chlorella that's acting as a poor chelator, not the added zinc. He's all for supplementing with zinc, but thinks that isn't going to make the body drop any mercury it has. He hates - did I say hates - chlorella. Thinks it does more harm.

 

The man seems very knowledgeable in his area of expertise. But that doesn't mean he's got it right. For all I know, he could be speaking absolute jibberish but saying it with such authority that he sounds convincing. We stopped chlorella and NAC to be on the safe side. We stopped ALA for now - it's apparently a really good chelator but crosses the BBB and will carry mercury to whichever side of the BBB where there's less (seeking equilibrium). So Cutler says to not use ALA until you've chelated the rest of the body for awhile (with DMSA or DMPS) so you're "sure" that when ALA moves the mercury, the body side has less than the brain and the ALA will chelate across the BBB into the body side, where it can be excreted.

 

I've begrudgingly ordered his book (he's not a pleasant man and I hated giving him royalties). But I need more info and his seems the best way to get a good understanding. You can read the first 40 pages of his book here http://books.google.com/books?id=ZG9glNfif5YC&printsec=frontcover&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false and a little on amazon

http://www.amazon.com/Amalgam-Illness-Diagnosis-Treatment-Better/dp/0967616808/ref=sr_1_1?ie=UTF8&qid=1317979540&sr=8-1#reader_0967616808

 

I'm not posting to scare anyone. I don't want to yell "fire" in a crowded movie theatre. I don't want to scare anyone away from anything that they feel is helping their kids. If what you're doing seems to be helping, stick with it. If anything you read on a forum worries you, by all means, check with your doctor. I don't have the science or medical background to suggest anything and heaven knows I once talked about Pandas with such authority and found out I was far from the mark with my own kids. So PLEASE take what I post as food for thought, but not medical advice or "absolute truth" for everyone. It's just that I came across this stuff and it was opposite what we were all reading in Dr K's KPU paper and I felt I should put it out there for others to look into themselves.

 

As for CORE, someone on the pyroluria site suggested that when you have trouble increasing your dose, you can start by adding the extra dose every 3rd day, then every 2nd day, until you build up to every day. I thought that was a good idea. Also, consider not giving all the CORE at the same time. Some in the morning, some at night, for better distribution/availabilty throughout the day.

Posted

Thanks LLM, that is good info and I hear you on your lower paragraph about your experience and sharing informaiton so no worries there. I wouldn't mind giving an approach like this, we have DMSA that I am using every other week with dd10 but dd8 has a seizure disorder and what I read was very strong about not giving to people with seizures. I didn' took into DMPS because of the other little I read on it seemed like if she couldn' take DMSA then she probably couldn't take DMPS but I will look into that. I'll read what this guy wrote too and hopefully I won't get to freaked out. What we are doing does seem to be working, but you know, I want to be sure I'm doing the right thing.

 

Susan

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