LOL! Understatement. All food makes me look like a pregnant woman. I have to be on a mostly liquid diet because I digest almost nothing. I take tons of supplements just for SIBO, parasites, enteroviruses, candida, you name it- so I try to keep gut starved, as best I can without starving myself so it can heal but that hasn't worked with methylation. With the low potassium gotta eat- which makes me bloat- which brings back old symptoms I spent years trying to get rid of. I wish I could be fed intravenously. Do I have gut issues, LOL!!!!
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Treating CBS Mutation
- Thread starter minkeygirl
- Start date
LOL! Understatement. All food makes me look like a pregnant woman. I have to be on a mostly liquid diet because I digest almost nothing. I take tons of supplements just for SIBO, parasites, enteroviruses, candida, you name it- so I try to keep gut starved, as best I can without starving myself so it can heal but that hasn't worked with methylation. With the low potassium gotta eat- which makes me bloat- which brings back old symptoms I spent years trying to get rid of. I wish I could be fed intravenously. Do I have gut issues, LOL!!!!
http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/
Ok I looked at this high thiol food-list and the WORST foods for me historically have NOT been these foods! I always do great with asparagus! Here are my worst:
-densely packed protein foods- peas, GRAINS, most seeds, legumes, meats of any kind that have NOT been boiled for several hours
- anything with any kind of sugar- fruits esp.
- most starches but strangely never had a problem with artichokes in moderation. Ripe bananas are the worst!
- cruciferous only do a very slight bloat but don't make me sick like meats and legumes
However, I tried methyfolate and methylcobalamin for a week at around 50 mcg and 250 mcg's respectively. The next day I downed three bananas for low potassium like they were nothing. No bloat! Then I had some intolerable side-effects and had to go to tooth pick amounts. Bloat returned of course. Can't wait until I get to high doses!
So with the articles- do I avoid Sam-e and methionine or take them? Are they markers? I didn't understand. I still don't know I get over the CBS mutation so I can take the big guns with out having side -effects.
Ok I looked at this high thiol food-list and the WORST foods for me historically have NOT been these foods! I always do great with asparagus! Here are my worst:
-densely packed protein foods- peas, GRAINS, most seeds, legumes, meats of any kind that have NOT been boiled for several hours
- anything with any kind of sugar- fruits esp.
- most starches but strangely never had a problem with artichokes in moderation. Ripe bananas are the worst!
- cruciferous only do a very slight bloat but don't make me sick like meats and legumes
However, I tried methyfolate and methylcobalamin for a week at around 50 mcg and 250 mcg's respectively. The next day I downed three bananas for low potassium like they were nothing. No bloat! Then I had some intolerable side-effects and had to go to tooth pick amounts. Bloat returned of course. Can't wait until I get to high doses!
So with the articles- do I avoid Sam-e and methionine or take them? Are they markers? I didn't understand. I still don't know I get over the CBS mutation so I can take the big guns with out having side -effects.
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Ha, thought so. I am the same way but getting better. I just had a small episode tonight because I ate Quinoa for the TMG but there are way to many thiols to cope with it. I took some Molybdenum and P5P and it got a bit better. Do you take TMG? (Trimethylglycine) I am thinking about it but I want to take as few pills as possible.
I am certain you do not have parasites, enteroviruses, candida. I thought I did but tests were negative. The SIBO is likely but thiols can cause this inflamation in the gut all by itself. I have never had an SIBO test.
I also have a FUT2 mutation which makes this all the more interesting.
By the way, thanks for the conversation. Been a bit alone in this science, my family thinks I am crazy even though i am nearly healed they think it is all in my head. And I am the healthiest one in my family, my one brother had heart surgery and ankylosing spondilytis at 55. Everyone else has anxiety and depression. I ask them to get this gentic profile but they just say no and do not explain why.
I am certain you do not have parasites, enteroviruses, candida. I thought I did but tests were negative. The SIBO is likely but thiols can cause this inflamation in the gut all by itself. I have never had an SIBO test.
I also have a FUT2 mutation which makes this all the more interesting.
By the way, thanks for the conversation. Been a bit alone in this science, my family thinks I am crazy even though i am nearly healed they think it is all in my head. And I am the healthiest one in my family, my one brother had heart surgery and ankylosing spondilytis at 55. Everyone else has anxiety and depression. I ask them to get this gentic profile but they just say no and do not explain why.
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This is interesting..
First, you took very low doses of 5-MTHF and MethB12. I take 2 - 4 GRAMS of 5-MTHF and 1-3 GRAMS of MethB12. Did you mean milligrams? Are you just working your way up?
http://www.amazon.com/Thorne-Research-5-MTHF-Vegetarian-Capsules/dp/B00FY8IQ7C/
http://www.amazon.com/Source-Naturals-MethylCobalamin-Flavored-Sublingual/dp/B001G7R8J2/
And have you ever tried P5P? The active form of B6? (pyridoxine 5 phosphate) That is what slows the CBS gene so you are not pushing all your homocystine down the transsulfuration pathway.
http://www.ncbi.nlm.nih.gov/pubmed/7400312
These results suggest that cystathionine beta-synthase activity in cells from patients containing a mutant enzyme with a moderately reduced affinity for pyridoxal 5'-phosphate can be increased by pyridoxine supplements in vivo, whereas that from patients whose enzyme has a more dramatically reduced affinity for the coenzyme cannot be so modulated because of limits on the capacity of such cells to accumulate and retain pyridoxal 5'-phosphate
No considering it (TMG) though. I took Betaine hcl with some success though. Don't think they are the same.
Was wondering about p5p- have so many mixed things about it. Tried it for a while with no bad side-effects but not sure any good either. Then I stopped when I tried methylation because I do not know how it would work with it. I have noticed that everything started reacting differently when I started methylating- that was before 23andme.
Now I am trying to figure out how to methylate well- without such horrible side-effects. I heard addressing other SNP's first helps. Doing sunflower lecithin for cell membranes to absorb K better.
Seeing a doctor in 2 weeks. Will post what he says. Want to check with him before trying molybdenum.
I can't imagine doing this alone- that is hard! I am hanging all my hope on this doc cuz I am in grad school and do not have time to research all day. But there are lots of people on this site that have done it alone and you will find lots of friends here Methyl Health.
I share your frustration with family. My 21 year old daughter is suffering greatly with so many of my symptoms but has burned by wholistic health so many times she doesn't want to disrupt her busy life at college to find out what is really wrong with her because of the work it entails.
I am so sick I have no choice. I have gotten by so far with herbs, chicken broth and various forms of gut starvation but I am so depleted of B12 that I can't go on anymore. I think I found methylation in the nick of time. I sometimes lose sensation in parts of my legs and it is scary. But B12 awakens too much healing too fast in anything more than a few micrograms. Body can't sustain it- yet. But I will get there.
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Hmmm I am +/+ for CBS- not sure if that means I have a dramatically reduced affinity or moderately reduced affinity. But so are you and it works, hmmm. Fascinating what P5p does- thanks! Will look more into this!!!
Micrograms of methylation. That is all I can do without blowing a fuse. Despite K supplementation, muscles tighten uncontrollably it is very scary- like someone is ringing them out like a wet rag. Dehydration constantly, inability to eat any greens and hyped up feeling- like I am overdosing on speed. I also feel like my heart is going to stop and anemic- because of the paradoxical folate deficiency symptoms. I know at this point I actually need more methyfolate but I am feeling so caffeinated and nervous to take more. So I have to ease into this. It will take time.
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Wow, sorry you are at that stage. I was there too. You will get better and you will be surprised how quick it can be.
Your genetics are a lot like mine. Do not think we should not start with B12, but start with the P5P.
Take a look at this image:
You see, when we MTRR mutants start with methylB12 we just help MTR recycle homocystine to methionine and then to SAMe which makes the homocysteine issue worse. Our gut issues are likely caused by high homocysteine.
My mood was better for a little while by taking methylB12 (because I was making more BH4) before I knew my genetics. But after a while the goodness wore off because my gut got worse. But once I saw what was going on with my genes I stopped everything. I started P5P (25MG) for the CBS, then when I felt some good stuff going on I started with 1 gram of 5-MTHF and 1 gram of MethylB12. I worked up from there, but now I take at least 75MG of P5P.
Do NOT take SAMe because SAMe will make the CBS mutation worse.
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This is why I took the P5P and why it helped me. Talk to your doctor about it.
This makes sense! Thanks so much for explaining about MTRR and B12!