Using 23andMe data for methylation guidance

[LNN]

I thought I'd start a separate thread to discuss how to use 23andMe data to get guidance on your child's methylation issues. This info may change as new apps or knowledge evolves but at the moment, this is what I'd suggest if you're just getting started with methylation... Hopefully others will share additional sites and articles and then we can pin this to the top of the forum.

 

For background info, I've found the following articles helpful:

http://autismnti.com/images/Website-_Yasko_Education.pdf - a good "methylation for dummies" resource

http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ - the writings of Rich Van Konynenburg, who died in 2012 but did a lot of research to help the Chronic Fatigue community by taking Yasko's ideas and applying them to those with CFS who needed a practical approach and may not have a local doctor's support

 

Once you get your 23andMe data, do the following:

1. Log into 23andMe and go to the tab that allows you to download raw data. Download onto your hard drive. (this will be a zipped file)

(suggestion - also copy this zipped file onto a flash drive and store it in a safe deposit box or in a second location so you'll always have access to it - helpful as knowledge evolves and a decade from now, you want to explore the data in a new way. But realize it contains highly personal info and guard it appropriately).

 

2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but I support the author's request for a $10 donation. The labor she's saving you is immense and I personally think she deserves the modest compensation. There are two profiles you can run - the methylation profile and the detox profile. I'd run both but I personally use the methylation profile more often.

 

3. Print the reports. Before you leave the screen that shows your results, hit "ctrl + print screen" or "ctrl + a" then "ctrl +c" to capture the data. Then go into a new Word document and hit ""ctrl + v" to copy this data into a Word document you can save. That way, if you lose the paper report, you have it electronically.

 

3.b. There are other apps that provide similar info plus additional analysis. One is found on http://www.mthfr.net and another can be found on www.mthfrsupport.com, which has developed an app called Livewello that has additional capabilities. Always make sure you understand how your data is handled and what you're agreeing to when you use an app like these. I've only used apps that say they delete your data immediately after running your report. No way to verify this of course, but do use these apps with an understanding of the privacy issues.

 

4. To interpret your report, I'd use this doument - http://www.heartfixer.com/AMRI-Nutrigenomics.htm It's a bit old - written in 2008. So the understanding of these genes may have evolved. But it's the best layman's practical guide I've found so far. It's worth reading all the way through and then, for simplicity, I've taken the document and copied it into Word. Then I deleted those sections that didn't apply to my results. I also deleted the extra things like recipes. I was left with a report that only addressed the genes where I had issues. Then I re-read this shortened document and highlighted specific author recommendations, such as "those with this gene mutatin should avoid x, y, z and supplement with a. b. c." This gave me a customized roadmap.

 

Applying the information in this heartfixer document can take some time and require some trial and error - and additional research. It takes awhile to look at the big picture of your unique gene combos to determine if you need a lot of methyl donors or only a few. Many of these methylation genes effect one another and either magnify or counteract each other's effects. You also need to research the supplements that are suggested. For example, Yasko and Roberts (the author) both suggest Yucca for those with a CBS mutation. yet Yucca is estrogenic, meaning it acts like an estrogen supplement. So I'd be personally uncomfortable using this supplement, especially without a doctor's guidance. While I resepct the knowledge of these experts and am forever grateful for their ideas, you still need to do your own research and understand the full range of effects any supplement can have. At the present time, Yasko is revising her views on the CBS gene and backing away from the role it may play in ammonia. So always check that the things suggested here are still the current thinking on the subject. It's a rapidly evolving field.

 

5. You now have an outline of what things to supplement and what to avoid. It's currently suggested that you start by addressing CBS and SUOX mutations, as these effect detox and you don't want to re-start sluggish cycles upstream without having a clear detox pathway. A good overview of the steps to take, in what order and why, is in Yasko's book http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf I've used this as an outline but confess that I had to read it in small doses. Aside from addressing CBS first, my personal experience is that it's been best to address the remaining mutations as a group, rather than supplementing for one mutation at a time. For example, rather than supplementing only for MTHFR and then moving on to MAO-A, I added small doses of various supplements for each, to try to find balance.

 

Always, always start at ridiculously small doses and always introduce only one supplement and wait a few weeks before adding in another. Otherwise, you'll have no idea what's causing a negative response and you'll need to start from scratch. To put things in perspective in terms of dosing, you may read that an adult typically uses 800mcg of methylfolate if they have MTHFT issues. But I know one child who does best on 67mcg every other day and one who needs 10mg every day. It can be very trial and error in terms of dosing. As a very general rule of thumb, I've been able to tell if something's having an effect within a few days to a few weeks. When I've crossed the line and dosed too high, I've seen an increase in the same symptoms I was trying to eliminate and I've stopped or lowered the dose for a few days/a week and then seen things calm down again. It's great if you can work with a doctor when developing your regime but make sure that doctor is well versed. I've seen some doctors mean well but give some really uninformed advice. There's a list of practitioners who do consults on www.mthfrsupport.com and some of these practioners participate on the mthfrsupport facebook page. But do realize they are not all MDs. Some have other degrees that allow them to call themelves doctors, such as a chiropractor. But verify their credentials and make sure you're comfortable with their training.

 

Here are some other good sites I refer to often:

http://mthfr.net/ - on this site is a good article explaining the different forms of folate http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/ and suggestions on what to do if you "overdose" on methylfolate while trying to dial in on what's right for you http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/

 

A good comparison of 23andMe vs. the testing Yasko does http://www.mthfrsupport.com/yaskos-comprehensive-methylation-panel-or-23andme/

 

A good article on why MTHFR isn't the end of the story http://www.mthfrsupport.com/why-mthfr-is-only-a-part-of-methylation/

 

the impact of mold on methylation http://www.mthfrsupport.com/living-with-mold-mycotoxins-and-mthfr/

 

MTHFR and thyroid http://mthfr.net/mthfr-and-thyroid-disorders/2013/07/18/

 

Source to create a custom vitamin/supplement: http://www.vitaganic.com/

Edited August 13, 2013 by LLM

[nitshel]

LLM - Thanks for the excellent resources and summary - a wealth of guidance here - very much appreciated!!

[chloe5763]

Thank you SO much LLM....you are such a huge help to those of us struggling to make sense of this information!!!

[nitshel]

Hi LLM and everyone,

We got our 23&me / Genetic Genie results yesterday and need some guidance.

 

Here are DS' homozygous mutations (i.e. +/+)

COMT V158M

COMTH62H

MAO A R29

 

Here are heterozygous ones (+/-)

VDR Bsm

VDR Taq

ACAT1-02

MTHFR C677T

 

MTR A2756G

MTRR A66G

MTRRH59Y

MTRR K350A

 

BHMT-02

BHMT-04

 

CBS A360A

 

> So, in short it looks like the COMT +/+ mutations are rocketing up Dopamine (which explains tics and why Risperdal (dopamine blocker) works for DS)

> According to Yasko, MAO +/+ combined with COMT +/+ depletes tryptophan stores and there are a few ways to increase serotonin - has anyone tried these (e.g. Mood S RNA formula)

 

A few questions for the experts out there...

 

1. We jsut have one CBS mutation (heterozygous +/- - should we address that first?

2.I know the VDR Taq plays into the COMT conversation but am confused how they relate

3. LLM - reading the heartfire document is hard because of the interplay between the genes...and the diet seems nearly impossible to do!!

 

Any advice, thoughts? Much appreciated!!!

[LNN]

I can only tell you what I'd do personally - doesn't make me right. But yes, I'd start with CBS - yasko says 6 weeks, but I understand how it can be hard to wait that long. I'd do at least 3-4 weeks of adding molybdenum, reducing/avoiding high sulfite foods and stopping high sulfite supplements (e.g. NAC, MSM, milk thistle). Yasko says to avoid proteins yet these are kids and I personally struggle with this one. First, they need balance in their diets and second, if you take out proteins in addition to high sulfite foods, it creates a pretty restrictive menu. So I've chosen to focus on limiting the sulfites and not worry a heck of a lot about proteins - I don't insist my CBS+ kid eat a lot of chicken or pork - 4-5 bites instead of a regular portion. But I don't limit cheese, ice cream etc. I think you have to use behavior as a guide. Not a pre-set lists of do's and don'ts. But that's just me. My kid is pretty stable, so easy for me to say. You have to see what your DS can or can't handle. Sorry I can't be more specific. But I've seen people tie themselves in knots over this and I just think you have to be realistic and do what you can, not be extreme. Yasko's addressing some pretty severe autistic behaviors. You need to find your own balance.

 

After CBS, I'd expect you to have the biggest behavioral impact by moving on to MTHFR and COMT. With his COMT, MAO-A and VDR Taq + status, and from what you say about tics, he's probably an overmethylator. (His COMT + VDR + MAO-A are all making him run high in dopamine and probably high in methyl groups). So when you address MTHFR, you'll probably want to use l-methyfolate and either straight hydroxyB12 or a combo of hydroxy+methylB12 (Perque sublingual B12 uses this combo). I personally like Yasko's Holistic Health methylmate B liquid drops when you start treating with methylfolate because the drops allow you to play with doses better and it you can adjust B12 dosing separately. When you get to the sweet spot on dosing, then you can look for a combo methylfolate+B12 combo (IMO). When we went down this road, we started with one drop of methylmate B per day and 1000mg B12 (I'd suggest Perque for your DS to start with). I was so thrilled to have the exorcist bipolar child gone, I got sucked into "more is better" and built up to 3 drops/day. Big mistake. Exorcist child returned. I stopped cold turkey for a week, let things settle and then did one drop methylmate B every other day. Sweet child returned. We've stayed at 1 drop every other day since (and give methylB12 every day - DD is an undermethylator, so we don't use a combo B12 - just straight methylB12). But some kids need a lot more than this. Unfortunately, you just need to devote several weeks/months to see what works for your DS.

 

The third step would probably be to then look at any additional balance you need to help with COMT. That might mean adding some additional methyl users, like a somewhat high end of niacin (nicotinamide). As you go along, re-read heartfixer and it will probably start to make more sense and you'll be able to see how the interplay between genes is effecting your DS. It can be very individual and is also impacted by what infections he's dealing with.

 

If your DS has any ADHD symptoms, you may find it helpful to add phosphatidylserine (sold as PS-100 on amazon). With his BHMT mutations, this can help.

 

As for Yasko's RNA products - I've never used them. I just can't justify the expense without being able to find any research to support the idea that they do anything. But I've also never needed to go to this step. Maybe if my kids didn't respond to other supps, I'd feel differently. IDK.

 

I used to supplement with tryptophan but found my kids do better without it now that we've addressed methylation issues. if you chose to try it, I'd do it after you've dealt with other things - it may not be ab issue by that point. Also look into tryptophan vs. 5-HTP - conflicting stuff out there on which works better to raise serotonin.

 

Again, I'm not a doctor and give these suggestions without knowing your son's medical issues or medications. If something I've said doesn't make sense to you, follow your gut. I only know what's worked for my family. Hope this helps.

[Dedee]

LLM has given you wonderful advice. She has a great take on SNP's. The only other thing I would add is that you read the portion in Yasko's book on GABA / Glutamate balance. When I read this section a big light bulb went off for me and we have gotten some great results from Yasko's GABA balance. I do not follow her protocol's completely because as LLM says some of it is too strict for my child and frankly way too expensive. However, I have read her material and follow her website and find pieces of her work valuable. I have tried a few of the RNA's. The one I found most helpful was the cytokine balance. We continue to use it. She used to call it behavior control but what it really does is interfer with the release of cytokines so she changed the name. The RNA's are very expensive so I have to see definitive results to invest in them.

 

Dedee

[LNN]

Dee - does the cytokine balance work enough to part with $85? Did you dose it the recommended 3x/day?

[nitshel]

LLM, Dedee - Many many thanks!

 

> LLM - How much Molybdenum and can I get it from say, Whole Foods? Ditto for the l-methylfolate?

> I dont know if we can wait 6 weeks for CBS - can we begin parallel supplements (i.e. Moly plus l-methylfolate) and GABA (see below)

 

Dedee - Thanks for the GABA tip. Reading this line made me think of DS immediately "Low GABA leads to impaired speech, anxiety, aggressive behavior, poor socialization, poor eye contact, nystagmus, and constipation" He had also come back with high levels of Aluminium - not sure where it could have accumalated from but it "poisions" GABA as well

 

Can I get GABA from Whole foods as well? Is there a particular form / brand?

 

We will start low on all of these and see what happens...

 

Thanks again!

[Dedee]

LLM - Well that's a good question. For me yes, but that is partially because my daughter is so against taking pills. She doesn't mind the RNA's or other tasteless drops that I can put in water. Now if it has a taste, you can forget it! But the RNA's have no taste and I let her count out the drops herself. I use it 3 times a day. Together with our LLMD we are working on cytokine release. Actually, for most people it may be just as easy to use some of the other supplements such as the tinctures that Buhner recommends but many of those have a bitter taste and that will not work for us. We have been using some of the supplements that Buhner and our LLMD recommend in capsule form but again I am limited on how many pills I am able to get down in a day so I have to pick and choose carefully. The cytokine RNA together with cordyceps has seemed to help. We are supposed to add in Chinese skullcap next. We started with Knotweed and had good results but she lost her taste so we had to stop (this happens in only a few cases). All of this along with the GABA has really turned my daughter around. She is so much more tolerable now. The moods are much more calm and the rages are almost gone. We still have the lingering OCD and she got sick last week so things sort of flared again. I must admit I am still considering an SSRI because no matter what we do we just can't shake the OCD / Anxiety thing. Her moods will settle and rages calm but the OCD is ever present. Ugg.....

 

Nitshel - We get our GABA from Holistic Health. We get GABA Balance. Be careful with which GABA you get. Some people mix their GABA with other supplements that can change the affect it has when taken.

 

Dedee

Edited August 30, 2013 by Dedee

[LNN]

Nitshel - I would really, really not do more than CBS for at least two, preferrably 4 weeks, especially if your DS has high aluminum. Getting the CBS cog moving again is going to start a detox process and you'll likely see some sort of behavioral issues as a result. if you add methylfolate during this time frame, you'll never be able to figure out correct dosing or what supp caused what issue. It may not be pleasant, but if he starts detoxing, adding in supps won't help until that gets under control anyway. You can talk to your doc about adding something for detox (can't recall if EDTA is ok with CBS - I know DMSA is not). Maybe a small amt of charocoal or bentonite clay, away from meds and supps. You may find he has less of a gaba deficiency once the aluminum is chelated (naturally or with meds).

 

The forms of folate you'll find in foods is not methylfolate. It's more readily usable than folic acid, but it still needs to be converted by your MTHFR gene. Since your DS is running at 50% efficiency on this gene, and he's fighting chronic issues, I'd personally use a methylfolate supplement to make sure it was getting the job done.

 

For moly - RDA for an adult is 45mcg. We use 75mcg for my DD8 (60lbs) who has CBS +/-. I use Yasko's moly drops so I can adjust dose (1 drop = 25 mcg). So you could start with 1-2 drops and build up. You won't be able to do that with a capsule. It's just like the methylfolate/B12 issue. I prefer to do each supp separately until we find the right dose and then look for combos that might be able to match that once things settle. So moly drops have worked well during that zeroing in period. The drops have no taste and like DeeDee, we put them into a 5ml medicine cup of water. She drinks it w/o issue.

[LNN]

Dee - does your DD respond to motrin? Is the cytokine balance RNA way better than motrin? Very intrigued but choking on the idea of $170/mo - it just isn't inthe budget right now

[nitshel]

Thanks all - DS is also on Motrin for the past 2 weeks and we need to take him off since it is toxic in long term. Dedee - any side effects or that sort of thing with cytokine RNA?

[nitshel]

LLM - One more Q - Genetic GENIE in its text says to get a "UAA" test baseline ordered before treatment for CBS (via Molybdenum) - did you get this test done? If so did insurance cover?

 

Thx!

[LNN]

I did not do the UAA test nor do I do the strips you're supposed to pee on. As I recall, these are for measuring ammonia issues and even Yasko seems to be shifting away from the CBS role in ammonia. There seems to be lots of agreement on CBS's role in sulfite/sulfate and moly's role in that as well as in breaking down aldehyde (a byproduct of yeast, which is currently a concern for my kids).

 

So the ammonia piece for me was less certain in my mind and frankly, after 5 yrs of various issues, I've collected too many stool and urine samples to be eager to do the pee strips. But the sulfur piece seemed like a no brainer and honestly, easier.

 

Doesn't make my decision right. But since we've already checked for metals and gotten rid of (we hope) infections, my path was more about healing rather than fixing. Others may find the ammonia piece to be more important for them.

[Dedee]

My daughter does seem to get better with motrin but not to the same extent. The RNA will last a while depending on how much you use. We are only using 5 drops three times a day right now. Many times on a school day she will only get it twice. I think the last bottle lasted about 6 or 7 weeks. As I said my daughter got very sick last week and everything came crashing in to ground zero. I did something I would only admit here......I started her on a Mom protocol steriod burst. Yep, no doctors order....I had prednisone so I started a steriod burst based on protocols I have heard from other PANDAS physicians (we nurses are bad about that sort of thing). I am so tired of going through physicians and begging for what I want. I already had what I needed so I just moved forward (please, no tomatoes). We are on day 5 and she is responding well. So far most symptoms are fading and she is almost back to her pre-sickness level. This is the first time we have ever tried oral steriods. She has had IV steriods before, so I figured this should be much easier. Please don't condemn me. I have really bad physician fatigue at this point and had a not so great experience at my son's Psychiatrist appointment this week. Just didn't think I could take seeing one more doctor. Ugg...

 

Dedee