Has gene data/treatment made a real difference for you?

[Jimk]

Like a lot of us, I'm thinking about springing for the 23andme test now that it's so cheap. But, having spent lotsa bucks over 25 years for useless treatments and tests, I am reluctant to get into another round of rigorous supplementation with little or minor result.

I've read a lot of posts on the Yasko protocol and on genetic testing and I have yet to see significant numbers of people reporting that this made a real, functional difference for them. Note: I'm speaking of the genetic testing-supplement link, not general methylation protocols where someone is working on the B-12 connection empirically but the testing has not been done. To me it looks like a lot of "sciencey" data about what should be happening, but...

So, for those of you who have been actively treating for these SNP's, has there been a functional difference from this?

 

[aquariusgirl]

Not so far. But those BH 4 genes look pretty interesting. See appear by James clelland

 

[caledonia]

Yes. I was getting such a strong reaction to B12 due to CBS, that I don't think there was any way I could have tolerated B12 without learning that I had CBS and how to reduce sulfur and ammonia. I have many B12 deficiency symptoms and am quite deficient, but yet couldn't tolerate even 1mcg.

I'm also getting a nice little bit of energy from carnitine and TMG. Enough so I can now keep up with the dishes, whereas before I couldn't (for over 10 years). And I'm just getting started.

I might have thought about taking mitochondrial supps like carnitine, but I never would have known about TMG (I have 3 BHMT mutations).

 

[Symptomatic]

Do you use hydroxy-, methyl-, or adenosyl-cobalamin (or a combo)? Since I share some of your issues, would like to learn from your experiences. Since I have CBS and COMT, I decided to start with the hydroxy (Perque).

 

[Branston]

Yes. I was getting such a strong reaction to B12 due to CBS, that I don't think there was any way I could have tolerated B12 without learning that I had CBS and how to reduce sulfur and ammonia. I have many B12 deficiency symptoms and am quite deficient, but yet couldn't tolerate even 1mcg.

I'm also getting a nice little bit of energy from carnitine and TMG. Enough so I can now keep up with the dishes, whereas before I couldn't (for over 10 years). And I'm just getting started.

I might have thought about taking mitochondrial supps like carnitine, but I never would have known about TMG (I have 3 BHMT mutations).

What CBS genes do you have? Did you test for the Sulphur and Ammonia somehow to demonstrate the ? What kind of reaction did you get to the B12?
Thanks

 

[Jimk]

Yes. I was getting such a strong reaction to B12 due to CBS, that I don't think there was any way I could have tolerated B12 without learning that I had CBS and how to reduce sulfur and ammonia. I have many B12 deficiency symptoms and am quite deficient, but yet couldn't tolerate even 1mcg.

I'm also getting a nice little bit of energy from carnitine and TMG. Enough so I can now keep up with the dishes, whereas before I couldn't (for over 10 years). And I'm just getting started.

I might have thought about taking mitochondrial supps like carnitine, but I never would have known about TMG (I have 3 BHMT mutations).

Thanks Caledonia. That's at least one result!

 

[Patrick*]

Like a lot of us, I'm thinking about springing for the 23andme test now that it's so cheap. But, having spent lotsa bucks over 25 years for useless treatments and tests, I am reluctant to get into another round of rigorous supplementation with little or minor result.

I've read a lot of posts on the Yasko protocol and on genetic testing and I have yet to see significant numbers of people reporting that this made a real, functional difference for them. Note: I'm speaking of the genetic testing-supplement link, not general methylation protocols where someone is working on the B-12 connection empirically but the testing has not been done. To me it looks like a lot of "sciencey" data about what should be happening, but...

So, for those of you who have been actively treating for these SNP's, has there been a functional difference from this?

I asked a similar question as part of this thread: http://forums.phoenixrising.me/inde...we-have-the-same-mutations.21861/#post-338172

I think the only person who answered was Laurel, who said that she went from a 3 to a 7 on a methylation protocol.

The back of Dr. Yakso's book has a number of testimonials, most from parents of children with Autism, but one from a former PWME. You can read her story at page. 201 on this link.

It's not a lot of data to go on, but then again, I think there's still a fairly limited group of who have undergone genetic testing followed by a tailored methylation protocol, and many of those who have are still implementing the long program. Now that 23andMe lowered their price from $300 to $99, maybe we'll see more people get on board. (That's what made me finally pull the trigger.)

 

[Jimk]

Patrick- Your comment opening that thread, "but I've yet to read any success stories." is what motivated my question, exactly! I know it's probably too early to ask this, but I wanted to see if anyone has anything to report. Testing is so seductive in this illness, because we've not had much more than "try this" and lots of anecdotal stories and the latest theory of somebody to go on, so we are hungry to have something that seems definitive.
I have a heterozygous MTFHR (just that test from my physician) and have been taking Metafolin and methyl B-12, with no real results to show. I'm a bit tired of choking down another regime of supplements and having little but very expensive urine to show for it! Aren't we all...

 

[caledonia]

There's Rich's study with 30 patients.