confused about CBS gene mutation

I"m so so sorry, Londolozi! I think if anyone understands about how hard and frustrating it is to have to keep starting over, it's those Lyme patients that have had to do the same.

I don't know enough about the gene mutations to be of any help, sorry. The only thing I've heard is that this is a good site for information: mthfr.net/

I bet someone will be along soon that understands this better than I do though.

Sarahm620, I think that it is active because I have such high levels of metal. I dare say that I have not been exposed to any more metals that most folks, but the fact that I am unable to detox well, makes me more suspicious that the gene is active.
The beauty of knowing no science at all, is that I can come up with a theory that I believe works, and so far none of my doctors seem to be able to refute it.
I will try my own little protocol for this and test it out. As far as trying to eat foods low in sulfur, that becomes a bit trickier as most foods have this, including coffee. Since coffee is the basically one of the only things keeping me sane, I refuse to give it up. I have tossed out dairy, also one of my favorite things and eggs. My doctor said that I don't have to be so drastic but I want to test this theory so that may be the only way.

Thanks for the feedback, Traveler. I have already visited that site and am familiar with it. My guess is that all of this stuff is pretty new so it is a case of the blind possibly leading the affected.

I have this gene too. My tip off was low homocysteine. I also have mthfr but most with that have high homocysteine. Do you take hydroxocobalamin b12? What other supps do you take for it?

Can I ask why you need to stop the acetyl L carnitine because of being hypothyroid?

Whay form of b12 are you taking?

I am taking P5P and molybdenum

You might want to go to pheonixrising.me

It's a site for ME/CFS, but gene mutations is a hot topic there. Astroman suggested it to me when I was looking for answers on how to handle mutations that fall out of the Methylation Cycle stuff. He also suggested Mthfr.net for interpreting the 23andme results. It is more comprehensive than Amy Yasko's site.

I did find there was a lot of info about mutations and how to handle them, but there are also lots of opinions about what you should and shouldn't do. Like on this site, some suggestions are challenged. I have found the good threads are the one's that back up their ideas with references to studies that have been done and published.

Kim

I looked at that site and gosh is it overwhelming. Does anyone know of any sites or even practitioners that I can send my raw file to and they can analyze for me? I see a bunch of stuff highlighted on my 23andme reports (like MTHFR, CBS, MTRR). But I am not seeming to have a hard time with herx reactions.

I am not taking anything for MTHFR because honestly my gut tells me to understand the whole cycle. I am taking hydroxyocobalamin b12 because I want to take some type of b12 and since I have low homocysteine I thought this was my best choice. Any info on where to go would be helpful. I have already pulled reports from genetic genie, livewello. I want something that plugs into that whole cycle.

k07 said...
I looked at that site and gosh is it overwhelming. Does anyone know of any sites or even practitioners that I can send my raw file to and they can analyze for me? I see a bunch of stuff highlighted on my 23andme reports (like MTHFR, CBS, MTRR). But I am not seeming to have a hard time with herx reactions.

I am not taking anything for MTHFR because honestly my gut tells me to understand the whole cycle. I am taking hydroxyocobalamin b12 because I want to take some type of b12 and since I have low homocysteine I thought this was my best choice. Any info on where to go would be helpful. I have already pulled reports from genetic genie, livewello. I want something that plugs into that whole cycle.

Well, what I've found is that part of what causes these mutations to be "activated" is deficiencies of certain things, be they chemicals or the vitamins/minerals that are relied upon for them to be made, which could then lead to other deficiencies or even too much of certain things, which could then activate more mutations.

This may be a poor analogy, but it's like.. say, when you trip and fall over something - your clumsy footwork sets the act in motion, but, in the end, it's not the only portion that is affected by it. It's just the beginning.

Though, for whatever reason, some people deal with these things without even being exposed to chronic illnesses, some are easier to have their mutations "activated," etc. I'm sure the explanations are there, but I've forgotten, and, again, I'm still just a beginner to this myself. It's hard to soak it all up and retain. I've just taken my list of mutations and pulled bits and pieces of information as well recommendations from it, so that I have an idea as to where to start.

But, anyway, back to you, you say you have the mutations - a lot of people do. But, the thing is, you haven't tripped yet. Maybe stumbled, but no falls.. yet. I don't mean to frighten you, though, if left unattended, it can get pretty bad - my chemical sensitivities, which seemingly started one by one, snowballing into this monster, have made it so I can't eat anything without reacting - physically and mentally. ANYTHING. Lettuce, chicken, coconut oil. I doubt I've been getting more than 500 calories a day for the past week, just because I can't tolerate researching when I am going through these reactions, which last all day. Other conditions could be contributing (candida, leaky gut, parasites), but I know that the methylation is a huge part that needs to be looked into first.

So, yeah.. I don't want to scare you, but I guess I'd just keep it in mind, maybe look through all the mutations you have and do some general supplementation for them? I don't know. I wish I did.

As far as analysis services beyond those of Genetic Genie, Promethease, places like that, I really can't think of anybody offering them, apart from the doctor who compiled all of that information on the website I linked, which sounds pretty darn expensive. There's also Dr. Yasko's methylation pathway analysis, but I think that's basically just an extended version of what 23andMe offers, with only generic recommendations.

You'd probably be best with a knowledgeable doctor, or attempting to play the role of one yourself by doing the book work, trial and error.

Though, again, it seems you haven't made the fall yet, so I don't know.

LASTLY, I JUST APOLOGIZE FOR TALKING SO MUCH AND TAKING IT TO A PERSONAL PLACE -- these past months, I've started to appreciate how much of a pain it is to have to read so much. As for my own issues, I just wanted to give you an idea as to how bad it can get.

Apologies for the formatting as well. I gave up on a being clean for the day. lol

Londozi, I've learned that dealing with the CBS/BHMT mutations is the first step, then the rest.

Less protein, lower the sulfate/sulfite levels, detox ammonia.

Honestly, if you're curious and didn't see already, go to that site, press ctrl + f to pull up the find function, then look for >> "Plan of action for CBS +/- or +/+"

It seems you're already doing some of what's suggested, so thumbs up! Should help, but make sure you and your doctor take the other mutations into account as well, whenever you get your hands on the information.

There are a bunch of methylation support supplements out there. As someone with massive methylation issues ( MTHFR, etc. ) my issues are not completely resolved by supplements or diet.

I have to detox very aggressively or I will have herxes that last months. Some of my brain herxes actually never even went away for years til I learned how to better detox them. It was hard for me to believe that "new age" detoxing could cause such issues in the body but for the portion of society who doesn't have the genetics it is a problem that needs be addressed.