Newbie here - help w 23andme results?

[kakrpa]

Hi all, I'm a 35yo female, and have been dealing with OCD as an adult - since I turned 23. I don't know what caused/triggered it, and I was never like that before in my life (tendency to worry, but never to that extreme/clinically). I've been researching OCD/methylation/genetic testing and am also getting tested for strep ABO's (waiting for results - the more I learn about PANDA's, the more I wonder if strep was my "trigger" at 23 as I remember being very sick around the time that this OCD began).

For those familiar with, or who have done the testing, I am very curious about the genetic angle to the OCD component. Anyone out there whose genetic results are perhaps somewhat similar to mine below? Just hoping to find someone who might relate symptomatically/genetically and if/what treatment was decided because of their results. There's so much to consider from these results - e.g., with Hetero A1298C you would think to supplement folate, however, if complicated by homo CBS A360A (which interferes with A2398C somehow) folate may actually worsen symptoms, I believe. Please don't take the previous statement as 100% truth as I'm trying to recall exactly how the genetic combination works and don't want to mislead anyone! Just trying to give an idea for factors involved in approaching treatment.

 

Would love to hear from anyone who can relate, or knows a thing or two about the genetic angle!

Summary: Hetero A1298C, complicated by homo CBS/BHMT2,4, and hetero MAO-A.

Homozygous:
VDR Bsm rs1544410 TT
BHMT-02 rs567754 TT
BHMT-04 rs617219 CC
CBS A360A rs1801181 AA

Heterozygous:
MAO-A R297R rs6323 GT
MTHFR 03 P39P rs2066470 AG
MTHFR A1298C rs1801131 GT
MTRR A66G rs1801394 AG
MTRR R415T rs2287780 CT
BHMT-08 rs651852 CT
SHMT1 C1420T rs1979277 AG

[Chemar]

bumping this up

 

Welcome to the forum kakrpa

[LNN]

Welcome to the forum! For my kids, treating methylation issues has brought great results, so I think it's great that you're pursuing this. But I will say that if you have an adult variant of Pandas/Pans, then you'll also need to treat the underlying infection before seeing complete relief. If you haven't already, you may want to read Swedo's paper from 2012 http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf where she lists other infections beyond strep that you may want to test yourself for. Mycoplasma infections and lyme have been big culprits in this community.

 

As for your mutations, from what I've read, I haven't come across a specific issue between CBS and MTHFR. CBS generally upregulates the entire transsulfuration pathway and therefore effects all of the methylation processes upstream and downstream, not just MTHFR. And to treat MTHFR, you need methylfolate, NOT folate. Here's a good list of what aliases a "good" methylfolate will go by and which types of folate to avoid: http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/. You also need to supplement with either methylB12, hydroxyB12 or adenoB12, which works as a cofactor with methylfolate. In your case, I'd guess that methylB12 would be your best bet, since you don't have COMT issues that might cause you to be an overmethylator. But MAO-A can also effect this and if you found yourself a little anxious or agitated on methylB12, you could give hydroxyB12 a try instead.

 

My daughter has both MTHFR C677T +/- and CBS +/-. She found tremendous relief from anxiety and mood issues my treating her MTHFR with a very low dose of methylfolate (67mcg) every other day and 1000mcg of methylB12 every day. My husband has the same mutations and he takes 800mcg of methylfolate and 1000mcg of methylB12 sublingual daily.

 

Yasko says you're supposed to address CBS first, and for that, my family uses 75mcg molybdnenum,100mg C0Q10 in the form of ubiquinol (there are 2 types of CoQ10 - ubiquinol is better absorbed of the two - and more expensive) and they've reduced protein and dairy consumption. Yasko suggests Yucca but that's estrogenic and I didn't want to compound any problem by adding estrogen into the picture.

 

I'd personally suggest focusing on CBS for a few weeks and then introducing a very low dose of methylfolate+methylB12 and building up to a point where you feel calmer. Maybe start with 400mcg methylfolate+1000mcg methylB12 and do that for 2 weeks. Then go up to 800mcg methylfolate and see how you feel for two weeks. Then either stay there if you feel good or increase it again. Some people stay at 400-800mcg and some end up at 5-10mg. But if you go too high, you'll start to feel the anxiety and mood issues return. That means you've crossed the line and you'll need to decrease to find your sweet spot.

 

You may find that addressing these two things will do the trick for you. If not, I'd make MAO-A your next target. MAO-A + means your body doesn't degrade dopamine or serotonin as quickly as it should. It's like flooding the carburetor. It takes you longer to calm down from a fight/flight situation. So you definitely want to avoid MAO-A inhibitors like anti-depressants and cough/cold medicines. Copper helps upregulate MAO-A, so test your copper levels and pay attention to your zinc/copper balance. When my son's copper levels got low (he has MAO-A +), supplementing with 2mg copper helped his OCD.

 

You're fortunate in that you don't have COMT mutations. Most of us here have found this in our kids, adding to their anxiety issues. You can review this document if you haven't seen it already http://www.heartfixer.com/AMRI-Nutrigenomics.htm and that will help with some ideas on your other mutations. But the MTHFR issue was key for my DD and you may find that finding the right dose of methylfolate + methylB12 helps you as well (in addition to testing for Pans infections/triggers).

[kakrpa]

Thank you so much LLM! This was the kind of experience/information I was hoping for!!! It's so great to hear from someone who understands this - it can be overwhelming esp when you factor in mutations whose treatments may be contraindicated. It's also great that you understand which forms are best (e.g., types of CoQ10), as I believe this is so important, and that you factor in supplements that have been recommended but are known to be estrogenic (possibly doing more harm than good!).

 

I hadn't seen Swedo's paper, but have downloaded it and will check it out - thank you! Regarding CBS/MTHFR combination, I watched Dr. Ben's 90 min MTHFR video where he addressed this combo (albeit briefly) - you can view the embedded video here: mthfr.net.

 

Thank you so much for relating your treatment experience. I ordered molybd a few days ago, and will give that a try as soon as I get it. I started taking SeekingHealth's HomocysteX Plus (includes 800mcg metafolin) a couple of weeks ago and am not sure I can tell a difference yet. Maybe I'll back off on that and address CBS/moly first for a few weeks, then re-introduce methylfolate (is HomocysteX Plus the right product? or should I stick with methylfolate? i.e., no B2, B6, B12, Betaine,etc.). I already take a separate B12/methylcobalamin sublingual separately.

 

Good input on MAO-A+! I didn't really understand what this mutation involved, so it's good to know about the slower dopamine/serotonin breakdown. From what I understand, OCD results from an increase/elevation in dopamine levels (right?), so this makes sense. Funny that you mention avoiding AD's - I'm on two AD's at the moment (Citalopram and Wellbutrin) along with Buspar and Xanax. I wonder if I weren't on the two AD's, if my doc wouldn't have needed to add Buspar/Xanax! I don't want to be on all of this, believe me, but it's truly helped me to be in a good enough place to try and figure all of this other stuff out - so, it is what it is for now.

 

I wondered about copper - I had been taking zinc (with copper) and read conflicting information about whether copper was good or bad to include for my genetic profile. So, I picked up a zinc only supplement last night - thinking I needed to avoid copper. This can be so confusing! How does one go about testing their copper levels??

[kakrpa]

Also, in case this is of interest, here is one persons' story related to seemingly good success with addressing CBS via molyb and activated charcoal, sulfur restricted diet, etc. LLM, did your family try charcoal/magnesium and/or elimination of sulfur from diet?

[LNN]

On the moly, there's a discussion on the MTHFR Support page about moly supplements that don't contain ammonia that you might want to check out https://www.facebook.com/mthfrsupport/posts/545209258830649 We've stuck with Yasko's liquid moly even tho it's chelated with ammonia simply because I don't want to use moly in the high doses discussed in this FB thread that don't have ammonia. It feels like trading one problem for another and since it's my child, who can't describe any changes she's feeling, I need to keep the moly dose low. But since you're an adult, it might be something you want to consider, pros and cons.

 

On the homocystex - I don't know anything about this particular supplement. But my own personal bias is to give each supplement separately and I generally don't use combos. I find that especially with kids, they need smaller amounts of things and often need to avoid one or more ingredients found in combos. For instance, B6, even in P-5-P form, needs to be closely watched in CBS+ people. Not everyone does well on hydroxyB12...etc. So as I figure this out on kids who have this habit of growing, thus providing a moving target in terms of dosing, I generally avoid combo supplements. But you're an informed adult, so this may not apply to you.

 

On MAO - I'm not sure of all antidepressants are MAO-I's You need to check your specific scripts to see. But with MAO-A, you're ability to degrade serotonin and dopamine is already inhibited. An MAO-I will reinforce this natural inhibition. So you may need a lower dose or something that works on genes other than MAO. But I wouldn't assume all antidepressants are MAO-Is. You'd need to check. If they're helping, you certainly want to be cautious making any changes.

 

Copper and zinc can be checked with a blood test. But be aware that it can only test extra-cellular levels. it won't show you what's inside the cell. My son and I have a condition called pyrroluria, where our bodies create a lot of pyrroles as a waste product of heme (blood) synthesis. Pyrroles like to stick to zinc and B6 and when you pee away the pyrroles, you also pee away your body's zinc and B6 supplies. This can't be detected from a blood test. It's a urine test that measures whether the pyrrole levels in your pee are normal or above normal. if above normal, good chance you have a zinc and B6 deficiency, regardless of what a blood test says. Another way to test for a zinc deficiency is to buy some liquid zinc http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_1?s=hpc&ie=UTF8&qid=1380818552&sr=1-1&keywords=liquid+zinc Drink 10ml and if it has a metallic taste, you don't have a zinc deficiency. If it has no taste, you have a significant deficiency. At least, so says Dr James Greenblatt at Tufts http://jamesgreenblattmd.com/jgreenblatt-bio.htm We both take Core, which contains moly, manganese, zinc and B6. http://retailbiopure.me/Core-240-Capsules.html I find that if I skip too many doses (it's pricey), I stop recalling my dreams. When I'm getting enough zinc, I have great dreams and feel better rested.

 

Here's more info on pyrroluria: http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder and http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on Pg3)

 

Zinc and copper are ying/yang. They should be taken apart from one another, not at the same time. I take my zinc at bedtime (it has a calming effect) and my copper in the afternoon with food (empty stomach+copper can cause nausea for me). Because I have pyrroluria, I need high doses of zinc. But I also need to supplement copper (just 2mg/day), since the high doses of zinc can chelate my body's copper in a greater amount than I can replenish from diet alone. Yes, it's very confusing. I think hair tests can also measure copper levels, but hair testing is a retro thing - doesn't tell you what's happening today - just what was happening when your hair was growing a few months/years ago. Others may have more input.

 

My son battled lyme for a few years and we did use charcoal to help with detox and the whole family takes magnesium at bedtime. (we don't use mutlivitamins - can't find any that have the right blends we need). But I've never used the sulfur strips and don't use it specifically for CBS. We do keep an eye on protein consumption but not fanatically. I have growing kids who need protein and a husband who will never divorce his meat sources. Our solutions have to be workable for a house of picky eaters and stubborn spouses (we have two of those in my house). But we do restrict other sulfurs and also eliminated all supplements that are high in sulfurs (NAC, milk thistle, ALA).