Using 23andMe data for methylation guidance

[nitshel]

Dedee - no judement at all - we all gotta do what we gotta do...totally understand where you're coming from....our DS is also backsliding - flu like symptoms, bedwetting, increased vocal tics - and we are going crazy with what could be cusing it - we're oping the methylation helps....

 

LLM - Did you also go on the gluten and dairy free diet? Because going GF and Dairy free along with sulphite limitation is near impossible to pull off...

 

We ordered the Moly from Yasko's site and should have in next 24 hours...praying it will help...

 

Blessings to all....

[LNN]

No - I deeply admire anyone who can go GFCF - way beyond my family's abilities. We've thankfully been able to get to a good place without major diet changes - I buy organic when I can, go to local organic farms for things in season, avoid High fructose corn syrup, but no one in my family would support me on it and I don't think I personally could do it. We do the best we can with supplements and common sense diet.

[nitshel]

LLM - when you began the methylayion protocol did you do it in parallel with say Abx or antiviral / anti-yeast to get rid of infections? Any thoughts on whether such a combo is better - or not? At the moment whatever we throw at this from a medicine perspective has had limited results -which is why we strongly suspect a methylation problem - but are not sure if we should clear up methylation before Abx or if its OK to go with both together...

[peglem]

We're doing both methylation and abx, and just finished a 7 day course of anti-viral. Since adding the methylation treatment, my daughter's moods and behaviors have drastically improved....really amazing!

[LNN]

We pursued infections and methylation at the same time. Since DS had lyme, it was a long (years) treatment path. We couldn't stop abx just to do methylation and we coudn't make sustainable progress on the infections without also clearing the roadblocks due to methylation blocks. They went hand in hand. But...only change one thing at a time. Don't change an abx in the same time frame you're working on adding a supplement for methylation if possible.

 

Peglem - your posts keep making me smile!

Edited September 1, 2013 by LLM

[nitshel]

Thanks all - One of the hurdles we face is that we havent seen any tests come back positive so we're using Abx as a broad spectrum thing. DS has become more and more "classic" PANS - right now he has a flare going on - flu symptoms, bedwetting, vocals coming back and mild OCD (picking his nails).

 

One theory we have is that the infection is hiding out in his sinuses...is there a test or treatment to see if that theory holds any water?

[peglem]

Peglem - your posts keep making me smile!

I cannot stress how much of a difference it has made in her. All these years, as she's getting older, the one thing standing in the way of her having any quality of life as an adult has been the fight or flight rages. I was earnestly fearful that we'd end up being one of those autism/mom horror stories (you know, the ones where child kills parent or parent commits homicide/suicide) because I just could not see how she could ever even be in a day program or, God forbid, a group home w/o some ultra sedating, lay-in-bed-drooling medication. Cognitive delays and motor skills are all things you can work around, but injuring yourself and/or caregivers will eventually result in police intervention and psych wards. Then, of course, there's just how miserable it is to be the person who is self injuring and hurting others. So, getting just this one thing under control is huge and absolutely life changing!!!

[TinyTreasures]

Thanks so much for starting this thread and for all your helpful information! As I posted on the last thread, my almost 4-year-old's mutations are:

 

Homozygous:

• VDR Taq
• MAO-A R297R
• CBS A360A

Heterozygous:

• COMT V158M
• COMT H62H
• ACAT1-02
• MTR A2756G
• MTRR A66G
• MTRR A664A
• BHMT-02
• BHMT-04
• BHMT-08
• MTHFR C677T
• MTHFR 03 P39P
• MTHFR A1298C

I've been reading heartfixer and Amy Yasko's site and most of the time my head is spinning with all of the different mutations and their interactions with each other and all the treatments, and on top of it - my boy is only 3 years old! How do I know if everything is safe for a 3 year old? I want to get him tested with the OAT test and metals test and amino acids test but that is over $500 - and that is just to see where he is initially! How does anyone afford that? =(

I did order Sulfate Urine Test strips...something I can actually afford. Waiting to receive those.

 

Right now for an unknown reason he is having a flare - tics, anger, aggression, rages over tiny things, hardly eating anything, bad language, obsessions - NOT my typical boy whatsoever.

His Neurologist prescribed 7.5 mg of Methylfolate and 500mcg of Methylcobalamin. Thank goodness I posted on here before using those things - you all told me that was a ridiculously high dose for a preschooler and as I've researched it, it is not hard to find information saying that high of a dose could have been dangerous for him, especially given his CBS mutation.

 

I have given him 1 drop of Molybdenum (25mcg) for two days now. How long before we see any changes? I've been reading about GABA...is that okay for a 3 year old? Does that help with his gene mutations or just something to relax him? Since he is Vitamin D deficient can I start giving him Vitamin D or do I need to wait until the CBS issue is addressed?

Off to read for another hour and to try and make sense of things.

Thank you again!

[TinyTreasures]

Okay so crap...the Molybdenum I purchased says "Molybdenum (a diluted solution of Ammonium Molybdate)".

Does that mean it has ammonia in it? Exactly what I am trying to avoid?

[LNN]

Yasko's molybdenum is this same form http://www.holisticheal.com/molybdenum-drops.html so I think you're ok on what you bought.

 

Yasko says you should treat CBS for 6 weeks before addressing anything else. Especially if there are detox or metals issues. But if your son's behaviors are hard to handle and you aren't going to add anything else for CBS except the moly, then I suppose you could try to add MTHFR support sooner - but I'd personally wait a minimum of 2 weeks with the moly first. What you might see with the moly is that the sulfate strips start out with a low number, then spike up after a few days of adding moily, then start to go down again. It's when they stat to go down and get below 800 that you're supposed to move on to other snps. Starting another snp before the body's ready just makes things murky. But I'd think if your numbers start to head in the right direction, then you could slowly start methylfolate/methylB12 without getting hung up on an exact number (I never used the strips - so can't give any specific advice). The moly probably won't helo with any behaviors. It's just helping with detox. It's like putting down a coat of primer before you paint. It won't give you the result you're after but it makes the finished product much better.

 

On the Vitamin D - from personal experience, you really need to force yourself to add only one thing at a time. From your son's behaviors, and with his MTHFR being compound heterozygous on C677T and A1298C, I'd add methylfolate/B12 before addressing the D. Give yourself 4-8 weeks to find a good dose and figure out if he needs straight methylB12 or some blend. By then, you'll be into late fall and you can make D your next target. But I wouldn't mess with D supplements before you have things stable with the methylfolate. It really does need to be one thing at a time or you'll end up having to stop everything and start all over if things get nutty because you won't know what the culprit is.

 

On gaba - I'd put this one lower on the list. It's possible that addressing the other issues first eliminate the need for gaba. I don't know if it's ok for a 3 yr old. But you'd certainly need a very low dose - lower than what's generally available in supplements. So I'd hold off until much later. JMO.

[TinyTreasures]

Thank you again! I will wait to see what the sulfite strips say before adding any additional CBS supplements. Hopefully they are low so I can slowly start the MTHFR treatment! Also going to see if my son's Neurologist can prescribe any of those tests what will check amino acids, metals, etc and maybe our insurance will cover it...

[TinyTreasures]

We got the test strips today and I had to test, even though it was bedtime. They are hard to read but I think he is in the 800 range? He is such a picky eater...only has about 20 things he will eat so this is going to be tricky. I feel like I need to find some supplements to help lower sulfur since there are only a few things on the sulfur list he even eats.

 

Question - we started giving him Molybdenum, and within 2 days he had very dark circles under his eyes and his mood was absolutely horrible - everything bad from months ago resurfacing with a vengeance. After giving it I realized the box said "a diluted solution of Ammonium Molybdenum" - not sure if that means there is ammonia in it, but if there is that is exactly what we were trying to avoid! Could the Molybdenum have caused the dark circles maybe? He was already in a flare but not as bad as the days he was on the Molybdenum.

 

I stopped the Molybdenum on 9/4 and the next day his eyes were definitely better.. However we also started back up on Augmentin on 9/3 (his miracle drug during bad flares) so it is hard to tell which thing did the trick. Today - 9/5 - he is nearly back to our sweet boy - COMPLETELY different than the past 2 weeks.

 

Do you think I should try and purchase a Molybdenum where it is specifically listed that there is no ammonia?

[LNN]

Ok - you put me onto quite a research project on this moly question! There's a confusing conversation on the FB mthfrsupport page between Sterling Hill - the person behind MTHFR and a few people who seem to understand chemistry. Sterling says molybdenum naturally contains ammonia and you need to find a product where they've removed the ammonia. Another poster (Birgit) says "hold on - if you take something out, you no longer have molybdenum." So being an art major, not a science major, I'm not sure who to believe. https://www.facebook.com/mthfrsupport/posts/545209258830649

 

Apparently, it's nearly impossible to find a liquid form of moly that isn't bound to ammonium (most minerals have to be bound to something to make them ingestible). You can get capsules of moly that are ammonia-free (but then, is it moly? - I got confused in the thread). But the capsules are all high dose - 500 mg when my kid only needs 75 micro grams. So that's not an option, IMO. In the thread, Shawn Bean, who's a nutritionist who treats people with methylation problems (and seems to know this stuff well), recommends a liquid that doesn't contain ammonia as a chelating agent but you need to be a practitioner to buy from the co. he likes. So scratch that.

 

One person does say Solgar's Molybdenum tablets do not contain ammonia and their product is only 150mcg - so that may be an option if your child can swallow pills or if if doesn't have a taste and you can crush it. http://www.solgar.com/SolgarProducts/Chelated-Molybdenum-Tablets.htm

 

So is the ammonia in Yasko's product an issue? I just don't know. I've been using it for 6 months and haven't noticed any problems. (Warning - TMI ahead) before I started using it myself, my urine sometimes had a sulfur-y odor. Since starting the moly, that smell has disappeared except when I eat high sulfur foods. However, I don't use the sulfur strips so I don't have any numbers to "factually" tell if the Ammonium Molybdenum has been an issue or not.

 

One thing ths FB thread mentioned was that molybdenum can be a copper chelator, so taking a high dose of moly can cause copper dumping. Someone speculated that if moly makes you feel bad, it may you have high copper and what you're feeling is actually the effects of copper being dumped.

 

Bottom line - I don't know. But it's a great observation - something I never gave thought to. You probably made the right call in stopping the moly for now until your son stabilizes. Just let the augmentin do its thing. Maybe do a few urine strip tests while he's off the moly to get "baseline". Then when he starts to be more himself, do another trial and see where the numbers go. Supposedly, the numbers can drop for a but and then spike up as the detox process happens, and then go back down again and stay down. Please keep me posted - you've certainly got my attention!

[nitshel]

Quick Q - probably directed at LLM since she's one of the smartest on snp's :-)

 

> Here's some guidance on the MTR A275G mutation (heterozygous for our DS). : http://mtra2756g.com/

 

While it talks about methycobalamine and methylfolate (which all line up with what we have been reading) - there's no mention of the hydroxy B12 which other articles point to being more relevant with someone who has COMT (+/+)

 

"Conversely, if you are COMT (+/+), we know that you have an excess of methyl groups floating around. We will give you hydroxy-B12, expecting it to combine with the methyl groups available to form the methyl-B12 you need (without ODing you with too many free methyl groups)."

 

So......Any thoughts on what form of B12 is best recommended?

 

On the moly thread above...the heartfixer article recommends 75 mcg Moly TWICE a day - is that an adult dose? "Sulfite is neurotoxic. Sulfite will be over produced by the CBS up regulation, and then requires conversion in to the less toxic sulfate molecule by the enzyme Sulfite Oxidase (SUOX). SUOX can easily be overwhelmed. Molybdenum is required for SUOX function, and is typically depleted in CBS (+/+) or (+/-) individuals. Molybdenum supplementation (3 drops or 75 mcg of e-lyte Molybdenum twice a day), Boron 3 mg/day, Vitamin E succinate 400 IU/day, and hydroxy-B12 2000 mcg/day are also utilized to speed up SUOX activity."

[LNN]

Interesting first article - where does it come from? I couldn't tell anything about the author or site. (just curious - it doesn't make the info less credible from what I can tell).

 

Nitshel - as far as I can tell, this is like a math problem. No single gene tells you for certain whether you need more or less methyl groups. It's the blend of genes (COMT, VDR Taq, MTHFR, MTR, MTRR, probably others) that, taken together, tells you if you should be using methylB12, hydroxyB12, adenoB12 or some combo of these. (just about everyone seems to agree that cyanoB12 is garbage).

 

So if you have 3 genes that have 2 pennies each and two genes that have one penny each and one gene that actually is in debt by two pennies, and the goal is to get to 5 pennies total, you'd use a small amount of niacin, which costs a penny, leaving you with the magic number of 5. (3*2)+(2*1)-2 gives you a genetic total of 6. So spend a penny (-1) on niacin and that will suck up enough to get your load to 5. (pennies=methyl groups).

 

The thing is, no one can peak inside and see exactly how your diet and supplements and genetics are working together in your unique body. There's no bank statement that says "you have a balance of 5" or "you have an excess balance of 10 - consider buying something that uses 5 methyl groups" You have to make an educated guess and then buy the smallest bottle of a B12 you can and give it a try.

 

My DD and DH have similar genetics on the genes that seem to influence methyl groups. My DH is taking hydroxyB12 and my DD prefers methylB12. You'd think they'd take the same things. But their diets are different. So I can only shrug and go with what they tell me they feel better on. (now, my DD also doesn't like the texture of the hydroxyB12 that my DH takes, so she could be basing her strong opinion on that and not on how it makes her feel, but I can only do so much).

 

I think the hardest part of understanding heartfixer and yasko and all the support sites that talk about this stuff is that you need to interpret everything based on your own unique combo of snps. It gets very confusing. I can't tell you how many times I read something, developed a plan, went off and started a supplement and then a few months later had this lightbulb moment where I thought "you idiot - you forgot about xyz. You're doing it wrong. You should be using abc instead". That's how I've learned to go low and slow on doses. If I'm going to get it wrong, better that I get it wrong on a low dose

 

It's also why I'm so geekily happy to hear other people's thoughts on the whole thing. Because there's a big difference between having read something a few times and really being fluent on the subject (I am NOT fluent)- and it's a subject that's changing all the time as people report back on what worked or as thinking evolves from the gurus. It's both exciting and frustrating and a bit "risky" in that we're all figuring this out as we go along. But that seems to be par for the course in Pandas, lyme, chronic fatigue - all the areas where patients are left to fend for themselves. Happily, Yasko and the doc who wrote heartfixer and some others seem to have it mostly right and their advice seems to be pretty decent - provided you always do some due diligence and use only the supplements that are absolutely necessary. Heartfixer lists several supplements you can take for CBS. But if you look each of them up, there could be reasons they might not be right for you. For example, they talk about Yucca's ability to remove ammonia. But Yucca is estrogenic. I don't want to give my per-pubescent daughter or my perimenopause self an herb that's estrongenic. L-carnitine should not be used by people who've had seizures. My DD had a febrile seizure as a toddler. So I hesitate to use that for her. Now there's this whole question about ammonia and molybdenum. A great issue I need to get my head around and make a personal decision about.

 

And yet doing nothing isn't an option either. I've seen so many positives from treating methylation issues that I can't see a day when using supplements isn't part of our mornings. But the exact blend of what's in each of our pill pile evolves as we all learn more. I guess you just have to try something and see.

Edited September 6, 2013 by LLM