Another plea for help with test results - Methylation & Detox

[Anawake]

Hi everyone. I'm new here, though not new to ME, having been sick for almost 27 years following HHV-6 infection. That said, I've never been at the severely-debilitated end of the spectrum. My main issues - apart from fatigue, brain fog, muscle-deadness/weakness and the usual - are allergies (to foods, ingested or inhaled chemicals, medications, etc.), intolerances (foods again) and general gut issues that can sometimes lay me out for weeks due to the pain. There is usually an identifiable trigger to the latter problem too.

I am also unable to tolerate most B vitamins in any form when swallowed. After a couple of days, I become very ill, with headaches, brain fog and general malaise. The exceptions are biotin and riboflavin 5 phosphate. For about a year now, I have taken all other B vits, including hydroxy-B12, sublingually, and not only do I tolerate this method, but I've felt - and looked - noticeably better.

Rich (sadly missed) identified, from MAP and AA tests, that my urea cycle is running fast, possibly because of a gut infection (I tested positive for enterobacter cloacae). Ammonia does not show up high, and taurine is only moderately so. I also don't tend to have an identifiable problem with sulfur-containing foods.

I'm a real novice in terms of genetics, but have just received my 23&me results and put them through Genetic Genie. These are the results.

Many thanks for any comments/ideas.

Anabel

 

[ktred]

I wish I could give you some sage advice, but I'm also a novice when it comes to genetics. Maybe being +/- for CBS, you have sulfur/sulfite issues. I am +/- for CBS C699T, so I plan on testing my sulfite levels sometime soon.

It's a good thing you discovered sublingual B vitamins since you have gut issues. Gut issues seem to impact so much of our health.
I hope someone more knowledgeable can help you out!

 

[adreno]

Your genes look pretty good in terms of methylation. No homozygous and only very few heterozygous SNPs.

 

[maryb]

Anawake
I too cannot tolerate B vitamins taken orally. Can you tell me which sublingual you use? Also does it contain folate?
thanks

 

[Anawake]

Anawake
I too cannot tolerate B vitamins taken orally. Can you tell me which sublingual you use? Also does it contain folate?
thanks

I make my own mix, with a bit of sugar to help the oral absorption. As with the Mega hydroxy drops from Yasko, I leave it in my mouth for 5-12 minutes and then spit it out.

I get the powders for most of the B's from Purebulk.com, who have quite a range of co-enzymated versions, etc. (I have no affiliation with them!). I buy folinic acid capsules from Yasko and use a third of a capsule in each mix as of now.

It's not an exact science, by any means, because - as I discussed with Rich - I don't have the knowledge about the particle size of each vit, etc., so as to know exactly how much will be absorbed. But it's definitely helped and is better than no B's at all! Amy did say to me that she's planning a sublingual B complex herself, though I have problems with some of her supps, so I'm not assuming I'll be able to take it.

Thanks for replying; it's good to talk to others who have this issue.

 

[Anawake]

I wish I could give you some sage advice, but I'm also a novice when it comes to genetics. Maybe being +/- for CBS, you have sulfur/sulfite issues. I am +/- for CBS C699T, so I plan on testing my sulfite levels sometime soon.

It's a good thing you discovered sublingual B vitamins since you have gut issues. Gut issues seem to impact so much of our health.
I hope someone more knowledgeable can help you out!

Thanks, ktred.

How are you going to test your sulfite levels? The test strips seem very expensive, and I haven't found any available in Europe yet, though I will do a better search later. I really hope this isn't an issue for me, as I do very poorly on a low-protein diet - especially a vegetarian one. I was veggie for 20 years and felt terrible for most of that time; I've been much better since adding fish, poultry and a little red meat 8 years ago. I even attribute part of the blame for my bad reaction to HHV-6 to having been veggie; I never felt well after giving up animal protein.

 

[Anawake]

Your genes look pretty good in terms of methylation. No homozygous and only very few heterozygous SNPs.

My MAO is +/+, though I agree that my results do look comfortingly yellow/green compared with most!

It backs up my feeling about my comparative state. Though I used to be bed-bound a lot during the first 17 years of my illness - and exercise intolerance was a serious problem - I attribute a lot of that to an allergy to perfume chemicals (phenols in particular) which would manifest hours after exposure, so took years to identify. When I 'de-chemicalised' myself and my environment, a lot of that got better. But the allergies are still a real problem; I've had two near-fatal reactions and have to be extremely careful in life. I still lack energy and have to gauge exercise compared with 'normal' people - and I sometimes wake up sick for no identifiable reason - but it does make sense to me that the blocks aren't as severe as most with ME/CFS.

I haven't really been to this forum before now, but I can't help but think that all of these pooled results - with their varying levels of mutations - must help put together a fuller picture of what we have in common.

Many thanks for replying!

 

[maryb]

Thanks Anawake - oh the thought of mixing them myself............. I was looking for the easy option as usual.
I've just returned after 'overdoing' it however. first time out in a week and thats what I do - most of us are guilty of that I guess. Maybe the thought of buying and mixing my own won't seem as bad after I've had a night's rest
I take it you just mix the powders dry and put the mix in your mouth?

 

[Anawake]

I spent a long time looking for an easy option too. It's so infuriating; even if the mix of B's itself is ever right (which is rare), there's some dodgy excipient. Incidentally, I use Thorne riboflavin 5 phosphate (though that has aspartic acid in it so YMMV) and Country Life Biotin. Biotin is the one B that I can't mix from powders; Purebulk do it pure, but you need a scale that goes down to micrograms - and the one they offer already 'cut' is cut with mannitol. I used to mix the caps in with the sublingual, but found I could take it normally anyway.

I bought a set of measuring spoons - 1/64 to 1/4 of a teaspoon, I think they are - from the same company. After several attempts to make a mix to last a week or so in the fridge, I find it easier just to do it every day now, straight into a small cup. You need to mix the thiamine in a very small amount of boiling water with the sugar, add the B6 (coenzyme) shortly afterwards, then the others can be mixed in as it cools. Then I just put them in my mouth for about 8 minutes. Again, that's the time I've found works for me, and I'm still not sure what's getting through and what's not.

It was a pain at first, but it's just part of my routine now. I hope you get a good night's rest!