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Why NAC is "bad" for my DD


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I got DDs 23andMe results today (posted previously about DS results last week). I have always scratched my head about why NAC (n-acetylcysteine) made my DD flip out when it seems like it should be so good. Turns out DD has several mutations in her CBS gene, giving her trouble handling sulfurs. I never thought she'd be positive for this since she's taken bactrim for months on end without issue and bactrim is a sulfur abx. But NAC. MSM, alpha lipoic acid, glutathione supps and epsom salt baths are all bad for her based on her CBS mutations. (she gets very itchy and irritated with epsom salt baths).

 

So puzzle solved. Her full report, using this site as my guide http://www.heartfixer.com/AMRI-Nutrigenomics.htm, has explained so much. Some supps will pass her lips no more, some will be started (much to her chagrin).

 

Also, one thing I discovered thru one of my kids is that if you have an MAO A mutation and/or COMT mutations, you do not break down dopamine (MAO A) or serotonin (COMT) as fast as those without mutations. As a slow metabolizer, you end up with excess dopamine (if MAO A) and if you take an SSRI for anxiety (with COMT), it will "activate" you because you're adding more serotonin into the system and you already have more than you can break down. Instead, you need to support these mutations and help re-balance the system. Wouldn't be surprised to find Pandas kids have MAO A and/or COMT mutations. COMT is also influenced by your VDR Taq gene status - which makes dopamine from Vitamin D.

 

Two puzzles solved today.

Edited by LLM
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Do you think that may be why so many of us report increased tics with Vitamin D supplementation?

I got DDs 23andMe results today (posted previously about DS results last week). I have always scratched my head about why NAC (n-acetylcysteine) made my DD flip out when it seems like it should be so good. Turns out DD has several mutations in her CBS gene, giving her trouble handling sulfurs. I never thought she'd be positive for this since she's taken bactrim for months on end without issue and bactrim is a sulfur abx. But NAC. MSM, alpha lipoic acid, glutathione supps and epsom salt baths are all bad for her based on her CBS mutations. (she gets very itchy and irritated with epsom salt baths).

 

So puzzle solved. Her full report, using this site as my guide http://www.heartfixer.com/AMRI-Nutrigenomics.htm, has explained so much. Some supps will pass her lips no more, some will be started (much to her chagrin).

 

Also, one thing I discovered thru one of my kids is that if you have an MAO A mutation and/or COMT mutations, you do not break down dopamine (MAO A) or serotonin (COMT) as fast as those without mutations. As a slow metabolizer, you end up with excess dopamine (if MAO A) and if you take an SSRI for anxiety (with COMT), it will "activate" you because you're adding more serotonin into the system and you already have more than you can break down. Instead, you need to support these mutations and help re-balance the system. Wouldn't be surprised to find Pandas kids have MAO A and/or COMT mutations. COMT is also influenced by your VDR Taq gene status - which makes dopamine from Vitamin D.

 

Two puzzles solved today.

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MAO and COMT also break down norepinephrine and epinephrine. My DD was extremely high in norepinephrine the first time we tested so I went down the path of looking for a drug that stimulates MAO or COMT as a possibility for treatment. I was just grasping at straws and trying to search every angle I could come up with. I never did get anywhere with that angle.

Edited by Trg girl
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StillHopefull - see this thread http://www.latitudes.org/forums/index.php?showtopic=19929 on how I teased out this info from the raw data. Not hard.

 

Trg- the link I posted above gave me a few ideas. My son has issues at COMT and MAO-A and a few BHMT snps. The two things I came away with was to look at adding methyl-takers like niacin or giving hydroxyB12 or adenoB12 to use up some methyl groups as it gets converted into methylB12. I'm going to try to accomplish this by adding a B-complex http://www.amazon.com/Source-Naturals-Coenzymate-Complex-Tablets/dp/B000GFPD2Y/ref=sr_1_1?ie=UTF8&qid=1363787806&sr=8-1&keywords=source+naturals+b+complex (read the section on MTRR where it discusses how COMT plays into this). It won't stimulate COMT or MAO-A but it will soak up some extra methyl groups.

 

The second thing I saw suggested was using phosphtidylcholine and/or phosphatidylserine to stimulate BHMT, which is also effected by COMT status (read the BHMT section just below the MTRR section). I stared my son on phosphatidyleserine in december and like the improvements.

 

The above link is 34 pages but I printed it out and went thru each section with my results in front of me. Then I jotted down ideas as i went along. This week, I'll copy and past the document into word and delete all the stuff I don't need. So if one kid doesn't have a CBS issue, I'll delete the CBS section. This will leave me with a customized summary for each kid and I won't have to wade thru the entire thing each time I need a refresher.

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Edit to my first post - I got the genes reversed. COMT does the dopamine breakdown and MAO-A does the serotonin breakdown. I originally wrote that the wring way. So my DS, who has an MAO-A mutation, would not do well on an SSRI. My daughter, whose MAO-A is fine, would do well on an SSRI. Sorry for any confusion. Too many letters jumbled in my head at the moment and haven't fully digested everything.

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Hey, I was just reading about the CBS gene yesterday. Can't believe you are posting about it now. This is so cool. While reading about several of the ones you mention, I have some big suspicions about my daughter. I'm not bold enough to say them out loud yet though. Just have to wait my 8 weeks. Keep me updated on the rest of the stuff about your daughter. Thanks!

 

Dedee

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My DD16 also does not tolerate NAC but does very well on Bactrim. She also had issues with SAMe when we tried it and has always had an aversion to sulfur veggies like broccoli and cabbage. I'm looking forward to our genetic testing results.

 

These links may or not be helpful regarding the CBS mutations but they seem interesting enough to share. They are way over my head but there's a lot of buzz words mentioned.

 

I got to the first link searching for an unrelated topic about how cancer treatment with high-dose methotrexate depletes folate even further in people with the MTHFR defect and Non-Hodgkin Lymphoma http://www.ncbi.nlm.nih.gov/pubmed/23488607. My brother in law has the lymphoma but we do not know about the MTHFR defect

 

 

In this link http://www.mthfrsupport.com/1/post/2013/03/why-are-genetics-important-when-you-are-diagnosed-with-the-boob-bug-aka-cancer.html the patient discussed has the MTHFR A1298A defect but also several CBS mutations. This 2008 book is linked in the article http://books.google.com/books/about/The_Effect_of_Over_Expression_of_Human_C.html?id=13r8J_QMXH4C but it appears that it is more of a paper because the book links don't work. It discusses mutations of the CBS gene and others that are involved in the making of the hCBS (human cystathionine beta-synthase) enzyme and L-Cysteine, glutathione, and the transsulfuration pathway. In regards to the hCBS enzyme, Belew, the author says "that there are more than 100 naturally-occurring missense mutations affecting the catalytic activity of this enzyme".

 

This paper references Belew http://microarray.host.sk/files/PEPR266K.pdf and talks about the P5P form of vit. B6 and CBS and the mutations.

 

This paper doesn't point out specific CBS mutations but explains a lot of the transsulfuration pathway and other mutations. The abstract is written quite well and is easy to understand and I want to experiment on the high protein vs low protein diet to see if it helps http://link.springer.com/article/10.1007/s10545-009-9006-9 but the full paper is very technical http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901774/.

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Edit to my first post - I got the genes reversed. COMT does the dopamine breakdown and MAO-A does the serotonin breakdown. I originally wrote that the wring way. So my DS, who has an MAO-A mutation, would not do well on an SSRI. My daughter, whose MAO-A is fine, would do well on an SSRI. Sorry for any confusion. Too many letters jumbled in my head at the moment and haven't fully digested everything.

 

Hi LLm, i am glad for you that you have figured some things out.

I also appreciate your posting your information as it may help alot of us.

Especially those of us who are older and have multiple panda children.

NOt that we still don't have to research, but it gives a great starting point.

Also i find i am getting more confused the more i work on this SOT.

 

Can i ask you to clarify something?

Are you saying if your COMT is fine, you break down dopamine well??

But if you have a mutation that you don't break it down??

And that that would lead to Vit D possiblely increaseing dopamaine if you have the COMT mutation and a VDR gene Tagged?

 

Thanks for clarifying.

I am trying to figure you what you originally said and what your correction is.

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Bactrim is a SULFA drug. Sulfa drugs are more appropriately labeled sulfonamides and are derivatives of para-amino benzoic acid.

 

Sulfur is an element of the earth. This element is essential to life, and is the eighth most prevalent element in the human body. They are not the same, thus issues with one does not preclude taking the other in any way.

 

A sulfanomide does contain sulfur, but the sulfur atoms are imbedded in a complex molecule. The sulfur atom is not the allergenic agent and being allergic to sulfa drugs does not imply having a propensity to allergy to other sulfur compounds.

 

http://www.itmonline.org/arts/sulfa.htm

Edited by Mayzoo
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Can i ask you to clarify something?

Are you saying if your COMT is fine, you break down dopamine well??

But if you have a mutation that you don't break it down??

And that that would lead to Vit D possiblely increaseing dopamaine if you have the COMT mutation and a VDR gene Tagged?

 

Thanks for clarifying.

I am trying to figure you what you originally said and what your correction is.

 

I originally (incorrectly) wrote that COMT was involved with tryptophan and MAO-A handled dopamine. It's the opposite and I went back to my original post and corrected so if someone only read that and not the rest of the thread, they'd get correct info.

So yes, if you are COMT -/- (meaning normal), you break down dopamine at an appropriate rate. The COMT gene is called the worrier/warrior gene. If you are hetero or homozygous COMT, you break down dopamine more slowly, leaving certain decision-making portions of your brain flooded with dopamine for longer periods of time. This produces a sense of worry. If you are COMT -/- (normal), you don't get overwhelmed with dopamine and you make better decisions in an emergency situation, like a warrior who can make sound decisions in the chaos of battle.

 

My daughter is COMT +/+ and one of her reports predicted that she wouldn't handle stress well. That's an understatement. If it's 10 minutes before the bus arrives and she's nowhere near ready, if I start hounding her to rush, she instead freezes - deer in the headlights - and panics to the point she can't do anything except cry. It's like when you flood the carburetor - too much gas prevents you from turning over the engine. You have to wait for the gas to dissipate. She's like that too. If she panics, she has to wait a few minutes for her fear mode to subside and then she can start to get ready again. Her brain gets flooded and she can't degrade the dopamine quickly enough. So I've learned the hard way that when she's running late, I actually need to back off or we pay the price.

 

As for Vitamin D - it depends on your particular VDR and COMT combination. It's understanding how the combinations of gene alleles work together or against each other that's so confusing. Your best bet is to refer to the heartfixer write-up once you know your specific genetic make-up.

 

Avoid speculating on what your kids mutations might be and supplementing based on your hunch. I did this and was wrong on a few judgment calls. I ended up supplementing both kids with tryptophan and tyrosine assuming they had shortages (based on anxiety and depression). Turns out this was fine for DD but wrong for DS. I spent months blaming adverse symptoms on a lyme or Pandas flare when at least in large part, it was likely due to my flooding the carburetor. After many years of treatment for infections, I'm now thinking our residual issues are due to methylation and not infection. I know it stinks to have to wait so long for 23andMe results, but the more I use the data, the more I'm grateful for the custom info it's given me.

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Avoid speculating on what your kids mutations might be and supplementing based on your hunch. I did this and was wrong on a few judgment calls. I ended up supplementing both kids with tryptophan and tyrosine assuming they had shortages (based on anxiety and depression). Turns out this was fine for DD but wrong for DS. I spent months blaming adverse symptoms on a lyme or Pandas flare when at least in large part, it was likely due to my flooding the carburetor. After many years of treatment for infections, I'm now thinking our residual issues are due to methylation and not infection. I know it stinks to have to wait so long for 23andMe results, but the more I use the data, the more I'm grateful for the custom info it's given me.

 

Yes. You are right. It is very difficult to be patient. I was not born with patience. FIXIT now...that's what i do. My entire family are take action people. Just do it, get it done. I wonder if that will reflect in my 23andme. I did all 5 of us, since all 3boys have pandas as well as hubby. So like you, i figured if i am researching, i might as well do all, instead of back tracking on the research.

 

I guess the question now is...how do you know what to start first?

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Ah fixit, always impatient, even tho we've both been at this so many years :)

Yasko advises to wait until you get your results because CBS, if you have it, should be treated first before you do anything else. Then you identify each of the other areas that needs help and you help each one a little bit. So you dont want to get one circle spinning at full speed while the others are still stuck. You want to unstick each one a little bit, then a little bit more, in concert with each other. So you re-start and detox in "equal" parts.

 

If you can stand it, wait until you get your results. It makes a lot more sense once you know for certain what genes are signalling correctly and which ones need support.

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