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So interesting! This is a battle I have working on for over a year now. I take 500 mg of molybdenum now but I am starting to notice that I am reacting more now to sulfur than before so I am backing off once again. Do you eat meat? I am thinking that might be the next to go. I am very sensitive to B6 and always have high ammonia levels. How long did you have to take the CBS RNA? I know it's like $85 a month. In your research, have you figured out how to downregulate the CBS pathway?

This a topic I know very well. Major brain dump follows.
If you have a CBS mutation, then you need to avoid sulfur donors (but not necessarily eliminate them). At the same time, you need to be careful about pushing too hard on your methylation system because down the line they will push on the CBS and increase sulfur and ammonia. You should still take methylation supplements (folate, b6, SAMe, etc.) but you need to create a balance. Make sure you have in place supplements that help "mop up" the fallout from the methylators. We use molybdenum to help detox excess sulfur and a product from Amy Yasko called RNA CBS+ to mop up ammonia. The last product is the only one we have found that helps mop up ammonia. It's is expensive but worth it. It is very important that you take the RNA CBS+ at least 15 minutes after you've taken another supplement, curcumin (if you are not COMT+). Curcumin "closes the gate" left open by the CBS mutation BUT it also aggravates COMT. Finally, BH4 is needed to detox ammonia. With all the ammonia you produce, your bh4 is likely depleted. I'm not sure ... More

This a topic I know very well. Major brain dump follows.
If you have a CBS mutation, then you need to avoid sulfur donors (but not necessarily eliminate them). At the same time, you need to be careful about pushing too hard on your methylation system because down the line they will push on the CBS and increase sulfur and ammonia. You should still take methylation supplements (folate, b6, SAMe, etc.) but you need to create a balance. Make sure you have in place supplements that help "mop up" the fallout from the methylators. We use molybdenum to help detox excess sulfur and a product from Amy Yasko called RNA CBS+ to mop up ammonia. The last product is the only one we have found that helps mop up ammonia. It's is expensive but worth it. It is very important that you take the RNA CBS+ at least 15 minutes after you've taken another supplement, curcumin (if you are not COMT+). Curcumin "closes the gate" left open by the CBS mutation BUT it also aggravates COMT. Finally, BH4 is needed to detox ammonia. With all the ammonia you produce, your bh4 is likely depleted. I'm not sure if you can still get bh4 as a supplement, but it's worth looking into. So, to summarize:
1. Eliminate sulfur-donor supplements (many amino acids are sulfur donors)
2. Limit high sulfur vegetables but don't eliminate them. Broccoli, cabbage, Brussels sprouts are all quite high, but we still have broccoli once or twice a week.
3. Add molybdenum to your supplements to mop up excess sulfur.
4. Add Curcumin to your supplements. A product called Premier Turmeric is good. If COMT+, try a product called Liver Nano Detox. Just a little.
4. Consider adding RNA CBS+ (order at holisticheal.com). Take 15-20 minutes after you have taken the Curcumin or Liver Nano Detox.
5. Take only small amounts of supplements like B6 and folate. We can only tolerate 1/4 capsule twice a day of each in this house. A little goes a long way when you are CBS+.
6. Look into getting bh4. Ask your doctor. We used to be able to get it from Japan via our doctor. We just don't use it anymore.  Less

TAW here. I too am homozygous CBS 699. I don't have many of the problems the upregulation is supposed to create. Although high sulfur foods can sometimes bother me. I think when people begin chasing these SNPs, especially without testing and knowing where their levels are: e.g. homocysteine, they can do more harm than good. I go on how I feel and eat what I think is best for me. I don't eat to remedy a variation in my genetics.

Lipoid Acid (also known as Alpha Lipoic Acid) should not be taken by anyone who has metal/silver amalgams in their mouth or suspects that mercury toxicity may be an issue for them (pretty much everyone these days, especially if you're having methylation issues). ALA is a strong mercury chelator and needs to be taken in the appropriate doses and based on its half life (and this is ONLY after all metal fillings have been removed by a holistic dentist familiar with IAOMT methods of removal). http://www.livingnetwork.co.za/chelationnetwork/chelation-the-andy-cutler-protocol/

I've been watching this thread and noticed someone just mentioned lipoic acid. My kinesiologist just put me on that this week. Said it will help with my ammonia build up and neuropathy. What supplements do you all take? Do any of you have gut/GI issues? Any autoimmune issues? And how the hell do we turn this CBS gene off.

I'm so much better off grains, dairy, gluten, sugar etc. I've had SIBO, yeast overgrowth, terrible GERD and other issues. Also hashimoto's.

Would love any advice. I feel like my GI stuff is lessening but the joint pain and brain fog persists.

Dr. Stewart is a very smart dude. but he he tends to be narrow focused on MTHFR and everything else is not significant in his eyes. I am not able to get around my CBS upregulation issues no matter what i do. J. Dunn. what practice do you work for and how significant is optimizing the VDR and COMT to assisting with CBS pathway? i am not currently taking K2 or lipoic acid right now.

I talked with Kendall Stewart once, and he was completely confused by CBS. He thinks that CBS C699T is the same CBS gene that causes homocystinuria, but homocystinuria is a down-regulation of the transulfuration pathway. I know that he was confused because he said that my homocystines would be high if I had a CBS problem. Nope, wrong gene, dude.

i actually see Dr. Kendall Stewart in person (mentioned in another post) and the neuroimmune stabilizer and much of his recommendations do not address CBS because he doesnt believe that CBS upregulation is an issue. but i haven't gotten anywhere with his suggestions. thanks J Dunn for your comments/ i have not heard that you can upregulate COMT and VDR to take pressure off of CBS. that sounds like a concept i want to try.

i'm CBS homozygous and i don't notice anything from eating sulfur or animal protein. I have no idea if i'm supposed to be eliminating these foods, and honestly, i'd rather not. I'm so confused ever since learning about CBS.

I have always read that CBS needs to addressed first. I have COMT and VDR mutations - and like I am sure many of us - Hashimoto's. So iodine is a bone of contention to say the least. I feel like every single one of us needs an extremely specific recipe to fix this so I read these posts with extreme caution - and interest.

Can anyone tell me what turns this stuff on? I feel like this all has snowballed for me in the last couple years and I can't exactly point at a trigger. And, once its on, can you really turn it off? Or just continue to work around it?

In my practice we have found that by up regulating other SNiP's you can take the pressure off of the CBS Pathway. You must make sure that the COMT enzyme is optimized first. Generally it is helped by minerals (manganese, boron, and other trace minerals) along with Iodine and possibly Inositol. Next make sure the VDR is upregulated with vitamin K-2 (I like complete K from NutriWest), vitamin A and vitamin D. Once you have these two variants optimized it will help the CBS be less sensitive and you will be less sensitive to sulfites. If you have an ACAT variant add in some lipoic acid, and thiamine. This will help with energy production in the Krebs cycle and reduce lipids (cholesterol) and lactic acid build up. It is critical to look at variants together not separately.

Thank you so much for your information and the websites. I'll inquire about scheduling an appointment and eliminating foods from my diet. I'll wait until I see a health adviser before I change or add supplements, however, I'm decreasing Metanx to one capsule/day. It's interesting that I've tried to get help through conventional medicine my whole life, and the physicians couldn't put their finger on what was wrong with me, but when I do my DNA and join a community, I'm getting some potential treatment for my conditions. Thank you so much. Karen

MK-7753, it's true that methylated B vitamins are bad for sulfur upregulations, but if it helped you, maybe you need it. MTHFRsupport.com has been a huge help to me. I've consulted with Shawn Bean who is a member of their site. The first appt. is $250 and then $150 for follow-ups I think....it's been a while. They have a bunch of practitioners who are probably just as good. However, I still do my research on any supplements recommended to make sure I think they're safe at the dosage recommended. I also only change one thing at a time to monitor if diet or supplement changes help or not. This is a good site for researching supplements http://examine.com/ And this has some good info on nightshades http://treating-fibromyalgia.com/fibromyalgia-and-nightshade-foods/ I hope something helps you soon! Unfortunately, I'm by no means cured, but at least I've found some ways to make the pain less intense naturally.

I've been taking Metanx for over a year, however, I read this morning I should be taking a different kind of B12. Metanx was a tremendous help with neuropathy and it's also expensive. I'm looking forward to adding vitamins to help me.

Thank you for your recommendation to avoid (night shade veggies); this is the first time I've heard this.

You have given some good advice and I know that I have I have a lot of work ahead of me. I hope to find a health practationer, who does Internet visits to manage my progress and I feel lab work as well as adjusting vitamins is imperative---along with dietary changes. I appreciate all responses I have received as it will help guide me to wellness. It's amazing that I received my results about 3 am this morning and I've received all these amazing recommendations. I'm so enlightened about healing. Thank all of you! Does anyone have an online health practitioners who ordered lab work and manages this deficiency? If so, what is fee?

MK-7753, changing your diet could help with pain. To see if your defect is actually being expressed, you can try being completely low sulfur for a week. Then add back in the sulfur. If you experience night and day pain levels, then you might have a CBS upregulation that could be increasing ammonia and sulfites in your body, which will burden your ability to detox and increase inflammation. I would urge anyone doing a low sulfur diet to check in with a functional medicine nutritionist to make sure they're still getting enough sulfur. It's important to understand that even though meat is high in sulfur, the sulfur is bound in with essential amino acids like methionine. Your body may or may not break apart the amino acid and release the sulfur. The sulfur in vegetables, however, is quickly digested because it's in a thiol form, so you may react to leafy greens and onions more than meat. Find your tolerable upper limit for sulfur intake and eat as much as you can. It's really a balancing act. And remember that it may be only a piece of the puzzle -- even though it can be a big ... More

MK-7753, changing your diet could help with pain. To see if your defect is actually being expressed, you can try being completely low sulfur for a week. Then add back in the sulfur. If you experience night and day pain levels, then you might have a CBS upregulation that could be increasing ammonia and sulfites in your body, which will burden your ability to detox and increase inflammation. I would urge anyone doing a low sulfur diet to check in with a functional medicine nutritionist to make sure they're still getting enough sulfur. It's important to understand that even though meat is high in sulfur, the sulfur is bound in with essential amino acids like methionine. Your body may or may not break apart the amino acid and release the sulfur. The sulfur in vegetables, however, is quickly digested because it's in a thiol form, so you may react to leafy greens and onions more than meat. Find your tolerable upper limit for sulfur intake and eat as much as you can. It's really a balancing act. And remember that it may be only a piece of the puzzle -- even though it can be a big piece. Nutritional testing is also really important (ornithine and molybdenum levels are important). Best of luck to you!
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I am currently on a sulfur free diet...or as close as i can get. One week into it I have seen some benefits. Looking for a way to get a prescription to test the ammonia in my blood. Dr. does not seem to think it is necessary. I would still like to know. Thanks for posting.

Changing my diet looks a life long commitment and is absolutely the treatment for this defect? I've been gluten free for 10 yrs and having to cut out additional foods that I eat on a regular bases is going to be depressing as well as difficult. However, neuropathy has been debilitating and the pain life altering. Changing my diet again is what I'll do---any thing I can do to hopefully walk again without walker and to not be miserable from joint and muscle pain!!

YY-7961 That's why I reported in an earlier post that I am doing more than eliminating sulfur. I was having severe neuropathy. I am contributing the improvement of neuropathy to B12, but concede that it might a combination of changes I have made. I like the post OC-3404 made. I am not an expert, I can only say what I have done and where I have gotten my info. Hope this helps.