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Hello! We have received our 23andMe results and as you probably know it's overwhelming! I've read through the heartfixer document and Amy Yasko's ebook and I have a concept of what is going on.

 

I have a few specific questions but first and foremost, CBS of course and I am not happy about the dietary restrictions they are suggesting! Food at our house is a very difficult topic all around and I don't know if I can manage it. So, I thought I'd post here and see what you, LLM and anyone else has done for CBS mutation if you are dealing with that.

 

We are all heterozygous for CBS. We have a doctor who will probably assist with the testing they recommend but we don't see him until November. I was looking at sulfur strips and wondering if there was a way to test ammonia at home. dd10 has always tested high for ammonia but dd11 and I have not been tested for it before. Do you think the pre-testing is important before we make any changes?

 

I can list our other mutations as well if you might find that useful in anything you might be able to help me with. I have already started methylated vitamins due to our MTHFR mutations but in reading about CBS I am wondering if that was a mistake. I know for me and dd11 it has helped a lot already but not sure about dd10 yet.

 

Thank you!

 

Susan

Edited by Suzan
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I thought I'd post the results here in case it's helpful. I understand that some of them there is nothing really known to do at this time so I can hopefully take some off the table!

dd11 - homozygous mutations:

  • COMT V158M
  • COMT H62H
  • VDR Taq
  • MAO-A R297R

dd11 - heterozygous mutation:

  • MTHFR C677T
  • MTHFR A1298C
  • ACAT1-02
  • MTRR A664A
  • AHCY-01
  • AHCY-02
  • AHCY-19
  • CBS C699T
  • CBS A360A

Me - homozygous mutations:

  • VDR Taq

Me - heterozygous mutations

  • MTHFR C677T
  • MTHFR 03 P39P
  • MTHFR A1298C
  • COMT V158M
  • COMT H62H
  • MAO-A R297R
  • AHCY-01
  • AHCY-02
  • AHCY-19
  • CBS A360A

dd10 - homozygous mutations:

  • MTHFR A1298C
  • COMT V158M
  • COMT H62H
  • VDR Taq

dd10 - heterozygous mutations:

  • MTHFR 03 P39P
  • MAO-A R297R
  • MTRR A664A
  • CBS C699T
Edited by Suzan
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Still away from internet most of this week but to quickly answer your CBS question - I too treated MTHFR first and saw good results. Wasn't going to stop just because it was time to start addressing CBS. So we stuck to what we were doing. I considered the ammonia strips but 1. wasn't eager to have DD pee on my hand and 2. have reqad mixed reviews on whether they're an accurate guide. So haven't used them, tho haven't ruled them out in the future.

 

For diet, we haven't made major changes. I've stopped insisting DD eat a medium sized portion of animal protein at dinners and just let her eat the quantity she wants. But I haven't restricted cheeses or ice cream etc. We're all just too tired after so many years. Instead, I;ve added molybdenum and increase it when we've had a lot of protein that day. I used Yucca for DD briefly but saw it was an estrogenic so I stopped it. DD is also suffering from an adrenal problem so that's taken priority.

 

My hubby is also CBS+/- so I put him on butyrate for 2 weeks and it's changing his plumbing too much so he's taking a holiday and I'll ask him to take it a few times a week once things have stabilized.

 

Supposedly, Yasko recently changed her stance on CBS being the cause of high ammonia. I haven't followed it closely but have come to see Yasko as a guide but not the final authority. She's by far the most comprehensive voice on thise but it's still all evolving. I also learned this week that her Methylmate B drops, which help my DD a lot, contain s-methlyfolate, not l-methylfolate. This makes absolutely no sense to me. Likewise, Lynch's B-complex has a high amount of niacin, which isn't helpful for my under-methylator DD. So just because their gurus doesn't mean you can buy their products without having to scrutinize them. I think you need to read what they suggest, share ideas with others in the same boat and implement what's practical and helpful.

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Still away from internet most of this week but to quickly answer your CBS question - I too treated MTHFR first and saw good results. Wasn't going to stop just because it was time to start addressing CBS. So we stuck to what we were doing. I considered the ammonia strips but 1. wasn't eager to have DD pee on my hand and 2. have reqad mixed reviews on whether they're an accurate guide. So haven't used them, tho haven't ruled them out in the future.

 

For diet, we haven't made major changes. I've stopped insisting DD eat a medium sized portion of animal protein at dinners and just let her eat the quantity she wants. But I haven't restricted cheeses or ice cream etc. We're all just too tired after so many years. Instead, I;ve added molybdenum and increase it when we've had a lot of protein that day. I used Yucca for DD briefly but saw it was an estrogenic so I stopped it. DD is also suffering from an adrenal problem so that's taken priority.

 

My hubby is also CBS+/- so I put him on butyrate for 2 weeks and it's changing his plumbing too much so he's taking a holiday and I'll ask him to take it a few times a week once things have stabilized.

 

Supposedly, Yasko recently changed her stance on CBS being the cause of high ammonia. I haven't followed it closely but have come to see Yasko as a guide but not the final authority. She's by far the most comprehensive voice on thise but it's still all evolving. I also learned this week that her Methylmate B drops, which help my DD a lot, contain s-methlyfolate, not l-methylfolate. This makes absolutely no sense to me. Likewise, Lynch's B-complex has a high amount of niacin, which isn't helpful for my under-methylator DD. So just because their gurus doesn't mean you can buy their products without having to scrutinize them. I think you need to read what they suggest, share ideas with others in the same boat and implement what's practical and helpful.

 

Does the MV you use have folic acid in it? If not, what do you use? Thanks

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LLM, that makes me feel so much better knowing you didn't hop right on board and completely restrict all the food :) I just knew we could not do that. But small changes and supplement changes, we can do that I'm sure.

 

My diet though..... low carb, dairy, meat, eggs....ugh!

 

Will re-read again tonight, maybe COMT since we have a lot of that going on.

 

Susan

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Mayzoo - we don't use a multivitamin because I can't find one that has the doses we need - one too high in this, one uses too little of that.... so we supplement individual vitamins. My son uses a B complex from Source Naturals that's high in niacinamide but that's good for him because he's an overmethylator. But DD can't use it. I just found one B complex that has no folic, folinic, folate - no B9 whatsoever. From Nature Made I think but don't have it in front of me. I also have a link to a company that will custom mix a multi accoding to your own wishes - a little expensive for my family of 4 but probably good if you only do it for one person. I can send you the link next week when I have access to my laptop again.

 

Susan - will touch base next week as well.

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I've summarized what I've learned to try to determine if this is a good place to start..... from your experience will you let me know if this sounds good or if I'l leaving something out or anything else important to check?



CBS - relax on pushing animal protein for girls, add yucca drops/capsules and molybdenum (detox sulfites) and manganese (detox ammonia) (and stop supplementing with taurine for dd10!)... decide how I want to eat.



COMT - if we seem to be doing OK with methyl b12 I'd rather not try to switch to hydroxy B12, adenosyl B12, and/or cyano B12.


What would the symptoms be if we were not doing well on methyl B12?



VDR taq - already taking vitamin D supplements



MAO-A - supplement with 5-htp - we take L-Theanine Calm Plex by ProHealth (5-htp, gaba and L-theanine). I think this product will still be ok.



ACAT - stabilize the gut..... we are doing vsl#3 or other probiotics for dd11. Hopefully that is enough.



MTR/MTRR- already supplementing with methyl B-12



MTHFR - already supplementing with methyl B formulas (currently using Thorne Methyl Guard Plus)



Question on CBS - we use Milk Thistle, NAC and ALA in our supplements for detox. Do you think it's worth it to try to find something else for detox that is lower in sulfur?


Also, I need to look into all the other supplements we take to see if others are high in sulfur.



Thank you for taking the time to check this out. I feel a lot less overwhelmed now after a few days of digesting the information and this breakdown of what the treatment might be.


Edited by Suzan
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I am still tinkering with methyl groups. I just had to completely stop them again for a while. Kiddo was on 100mcg of methylfolate and 1250mcg of hydroxy b-12 patches every day. She was getting the "upsets" anywhere from a few minutes a day to a few hours every day. The "upsets" stopped within 48 hours of stopping the methyls and they have been gone now for 5 straight days.

 

The "upsets" are when she starts crying for no apparent reason, her vocal tic comes on strong, she becomes very frustrated and she appears to be in pain (physical or emotional) of some kind. She clings to me and looks up at me as if begging me to make to make them stop.

 

I will try the methyls again some other time, but right now we are enjoying the peace :).

 

I left kiddo on taurine and Enhansa despite her being hetero on one CBS. She does well on them, and her neurotransmitter test showed she was low on taurine. Hetero does not mean you need to completely stop something if they are already doing well on it. They have one working gene. It does means to watch and be aware of potential issues.

Edited by Mayzoo
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  • 2 weeks later...

geneticgenie and mthfr.net . The former asks for a ten dollar donation and the other requires a $20 payment. The latter is a lot more comprehensive. They both just tell you heterozygous and homozygous for a bunch of different genes -- you then have to go look up their meaning yourself.

 

You may be able to type MTHFR or C677T into 23andme.com's search engine for your results and see what they say.

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Here are DS's mutations, how do I help DS?

 

MAO-A R297Rrs6323TT+/+

MTRR A66Grs1801394GG+/+

COMT V158Mrs4680AG+/-
COMT H62Hrs4633CT+/-
VDR Bsmrs1544410CT+/-
VDR Taqrs731236AG+/-
MTHFR C677Trs1801133AG+/-
MTRR A664Ars1802059AG+/-
CBS A360Ars1801181AG+/-
Thanks in advance,
T.Anna
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T. Anna - I just started a new topic that may help you on next steps.

 

With a CBS +/-, it's no wonder your DS struggled with those high doses of NAC. With MAO-A + he may find that niacin helps reduce a quick temper. But he also has MTHFR +/- and COMT +/- so you'll need to strike a balance on the need for methyl groups. You may need to use a blend of methylfolate, methylB12 and hydroxyB12 rather than just the methyl forms. You'll also need to do some trial and error on how much Vitamin D supplementing he can handle. B/c he's VDR Taq +/-, he "should" be able to tolerate a D3 supplement, but with the COMT +/- and MAO-A +, he'll have a tendency to run high in dopamine and not be able to degrade it quickly. He may be the kind of person who needs a few minutes to decompress alone after a stressful event, lest he lash out if expected to cope too quickly. So if you need to add D3, consider a lower dose more often or one with vitamin K added.

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In Yasko's book, she says about MAO-A+ status:

 

"With a Mao A + status, decreased enzyme activity lessens the ability to degrade serotonin. As with COMT V158M+, with Mao A+/+ status, serotonin cycling from high to low levels may result in mood swings or even aggressive behavior." (pg. 153, Autism: Pathways to Recovery)

 

Yasko also has COMT v158M+ and VDR Taq + contributing to lower dopamine:

"The COMT enzyme transfers methyl groups which inactivate the neurotransmitter dopamine. With COMT V158M + these enzymes are less active, and thus inactivate dopamine to a lesser extent. The VDR Taq SNP also impacts overall dopamine levels. That's why together the VDR Taq and the COMT V158 status are key indicators of bodily levels of dopamine. The composite of the COMT V158M and the VDR Taq status determines the amount of methyl donors a given individual may tolerate.

The norm, VDR Taq -/-, has been associated with higher levels of dopamine. VDR Taq +/+ represents changes in the gene typically resulting in reduced dopamine levels." (pg. 142)

 

Pg. 143 COMT -/- = need to supply methyl groups

COMT +/+ = less need to supply methyl groups

 

(my son is hetero for COMT - so I'm going to alternate!) I am just NOW reading through the book. My head is spinning...

 

Dr. Yasko's book can be downloaded for free, here: http://www.holisticheal.com/autism-pathways-to-recovery-book-and-workbook.html

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