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Wombat140

Need advice about CBS (sulphur) diet/supps

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B Complex without folic acid or B12 - Seeking Health's B Minus http://www.seekinghealth.com/b-minus-100-vegetarian-capsules-seeking-health.html We've tried numerous other types, even ones from the same company, and this is the only one that works for her.

 

 

I've been looking for just this kind of b complex but the niacin seems crazy high or is that a typo on the website??

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just want to second what llm said about diet: you may want to go to omniverous diet. not sure that you can deal successfully with autoimmune conditions on vegetarian diet. their nervous system needs fat and methylation needs vit Bs.

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B Complex without folic acid or B12 - Seeking Health's B Minus http://www.seekinghealth.com/b-minus-100-vegetarian-capsules-seeking-health.html We've tried numerous other types, even ones from the same company, and this is the only one that works for her.

 

 

I've been looking for just this kind of b complex but the niacin seems crazy high or is that a typo on the website??

 

No, unfortunately, it is way high. Dr Lynch thinks niacin is so important, that he uses a lot of it. I'm not sure I agree but both my DD and DH, both with MTHFR, do well on it. They both treated MTHFR first, with methylfolate and adenoB12, and then added this B Complex later. So maybe once their methylation cycles were working better, the niacin was less of an issue. We used to get a B Complex from a compounding company called Vitaganic where you could create your own multivitamin. selecting each ingredient and dose you wanted them to add. But the site has been shut down.

 

I also tried Seeking Health's Optimum Start, giving DH and DD only one capsule (instead of the 4 listed as one dose on the label). But they both got very cranky after a week on it and both got much happier again once I switched back to the B Minus. So it seems to agree with them. They do complain about an occasional "niacin flush" - once every few weeks. But a small price to pay when nothing else seems to work as well for them. If the niacin proved to be too much for your family, you could also use a bit more methylfolate/B12 to add back any methyl groups the higher niacin dose was sucking up. Just a thought.

Edited by llm

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Aw, but I was enjoying trying out going vegan ;) (It actually is something I've sometimes thought I should try - on moral grounds, not health particularly - but since I'm not the one that does the cooking, it wouldn't have been fair just for that.) Is finding exclusion diets fun a sign of eating disorder, or just of liking making up recipes? :) I'm being careful about protein, that's perfectly doable. But you may be right about fat, pr40 - occurred to me only this morning. Some of what I'm adding for protein is nuts, which have fat, but some is beans which don't that I know of. Will adjust accordingly. B vitamins, rubbish, loads of things have B vitamins, not just meat particularly, and there's all these high-dose B vitamin supplements I'm supposed to be taking as soon as I manage to sort out which ones anyway!

 

I'll stick to the diet just for the moment, I think - thanks for the suggestion about ornithine but, well... there are reasons why producing even more urine would make life very difficult at the moment. OCD is the most embarrassing mental illness I know of. Might consider Yucca though, very temporarily. Oh I'm also taking charcoal 3 nights a week, forgot to say - apparently it's supposed to mop up some of the ammonia, though that seems a bit of a rough and ready solution.

 

Anyway, thanks very much for the comments about the multi. It helps a lot to have confidence about exactly what happened there. As I say I stopped the multi and the boron on Friday, and I think the aggravation is finally dying down - we're back to just bad-like-it-was-before. I didn't realise avoiding folic acid was THAT important! I won't make that mistake again.

 

I thought you weren't supposed to start methylfolate, or methylanything, until the sulphate was reasonably down? Of course it was never THAT up in the first place - was that what you had in mind? The B12's straightforward anyway, can use the hydroxy (or the adeno - thanks for clarifying that that works), just haven't got organised to get any.

 

Mmiglio, as regards methyl folate, I'm in the same position - COMT +/+, in two places, and I think VDR Taq +/-. I only know what was in the Heartfixer document, but that says definitely that if you have that and also MTHFR C677T, you should take 5-methyl folate all the same because it's the one and only way to address the MTHFR, but use non-methyl forms of everything else (e.g. B12) to "make room" for it.

 

 

Ahh it is bewildering stuff :D but I think I'm slowly getting it worked out, thanks to all of you!

Edited by Wombat140

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If the niacin proved to be too much for your family, you could also use a bit more methylfolate/B12 to add back any methyl groups the higher niacin dose was sucking up. Just a thought.

 

 

We aren't at the methyl group thing yet... we are COMT and VDR Taq so I read we are very intolerable of them. Waiting to hear from the dr about how to supplement.

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I knew there was something I'd forgotten to ask. Please can you tell me, how soon do you see (or smell!) a change in urine after you've changed something (food or supplements?) My urine sulphate test strips have been showing zero for several days. I need to know whether it really is possible to go from ~800 to ~0 in less than ten days, or whether something's wrong with the test. (As I say, the smell of my urine is not a useful guide to anything, for reasons people probably don't want to hear about.)

 

If so, does that mean I'm ready to start on methylfolate, and/or trying out adding things back into my diet, straight away?

 

I'd ditch the multivitamin and the boron. I never saw detox effects - when we hit on the right things, my kids responded in good ways in a matter of 1-3 days. There wasn't a lot of iffy-ness. There were clear changes.

That is very encouraging to hear. I'm sick of iffy-ness! :D

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First, understand that people, including the gurus, are only beginning to understand the best ways to use genetic info in advising individuals. Yasko's advice isn't without criticism and there's some research in PubMed that seems to suggest she's not 100% correct when it comes to CBS and ammonia. Heartfixer - tho I think it's an awesome road map, is 7 years old and a lot had been learned since then - in both research and in practical life. So take what's useful and what seems to apply in your own life, but don't take the Heartixer document as gospel.

 

Second, while Yasko thinks CBS should be treated first, I don't think it means other snps should be totally ignored until your CBS benchmarks are 'perfect'. To begin with, do a reality check to see if your CBS variants are expressing. Having a variant isn't the same as having a variant that's expressing. Have you done any sulfur strips? Does your urine sometimes have an ammonia or strong smell? Do high sulfur foods bother you (e.g. wine or the foods listed in heartfixer), have you had your homocysteine, B12, folate or B6 levels checked?

 

If you do think CBS is an issue for you, then implement some of the easier steps listed in heartfixer and see if you notice or measure any changes. For example, add molybdenum, reduce sulfur from your diet, lower (but IMO don't eliminate) protein and sulfurs if your current diet tends to run high in these things. If you want, add some of the supps mentioned. I've found Yucca to be very helpful but do be aware that it's estrogenic and will raise estrogen levels. It should not be taken continuously for more than 3 months and I personally don't think it should be given to a child or adolescent for any significant period of time. L-ornithine is also very effective at lowering ammonia and is used in ER's for this purpose. Ornithine is the rate-limiting amino acid in the urea (krebs) cycle and is something the body naturally consumes, so I think it's a better option. But it will make you pee more often (because it's a key amino acid in the production of urine). So if that becomes inconvenient, Roselle (hibiscus sabdarifa) is an herb that also lowers ammonia if you take it for a week or two. But don't feel you need to do or take everything listed and certainly not all at the beginning. Make one or two changes and see if it helps. Then make more changes as necessary/practical.

 

Then consider addressing other troubling snps - like MTHFR, COMT, MAO, VDR Taq...these also affect your health and all of them affect each other. So you can't get one "perfect" and then tweak another and not have it also affect the first thing you just got "perfect". I personally think it's better to make noticeable improvements in say, CBS. Then address say, MTHFR, until you narrow down a pretty acceptable regimen there. Then move over to the next snp, then circle back and check in on your CBS ammonia and sulfur issues. I think Yasko et al talk about things in a linear fashion so that a confusing topic doesn't get even messier. But in reality, it's all interconnected. You can't tug on one string without making the others change too. So try to look at it as a spiral rather than a line.

 

To your questions -

1. there is no time frame. It depends on your diet, your other snps, your activity levels, your weight, your medications...again - I didn't take heartfixer as an absolute. It was more of a list of suggestions for me.

 

2. Gluten - some people swear by GF and others find it way too difficult to consider. I'm in the second group. I think heartfixer errs on the side of caution and figures GF won't be bad for anyone. But not everyone has problem with gluten. And even people who feel better avoiding gluten might feel better because they've turned to organic or away from processed foods. It's not crystal clear that GF gives great results solely because it eliminates gluten. You can do a blood test for gluten antibodies to see if you may have a problem with it. Or you can just try it and see how you feel. But I don't think it's a necessity for everyone and it doesn't have anything to do with CBS specifically.

 

3. see #1 but I generally give any experiment 2-3 weeks without changing any other variable to decide if something's working or not.

 

4. Personally, I cut back a bit on protein but not drastically. I never had a high sulfur diet to begin with. I would try to change any high sulfur med to something that didn't have high sulfur. The supps I added for CBS (molybdenum, roselle, vitamin E for me, molybdenum, carnitine, ornithine/arginine, Vitamin E for DD) have become permanent daily supps. I think adding roselle for me, ornithine for DD were the two most important. But the changes we made were not severe and so they've just become our new normal. But if you needed to make more severe changes, then I'd say to reassess once you went thru one spiral and had addressed your more serious snps for 6-12 months and then see where your ammonia/sulfur levels were, how your urine odor had changed, how you felt, etc. It's always going to be a bit of a moving target and work in process.

 

Hope this helps

llm, you mention above about having your b6 levels checked. Do you know what significance high blood levels of B6 would have? My searching is coming up with nothing so wasn't sure if you had any ideas. Her B12 is normal (although low normal), she does have CBS A360A++ as well as ++ on 2 of the BHMT's. One doctor suggests methyl b12 and another says hydroxy. So I've done neither yet. Is the ammonia testing done via urine?

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Wombat - I generally detect a positive change in 2-3 days after implementing a change and sticking with it. Likewise, I can detect a negative change within a day of eating a high sulfur diet (eg lots of garlic or sauerkraut for me). I'd be suspicious of test strips that consistently read zero day after day - you never weigh exactly the same one day from the next, so it feels like you should see some ups and downs. But I don't have any personal experience with the strips. From what you've posted, it seems that adding a small amount of methylfolate plus hydroxy or adenoB12 would be your next step, that yes you're ready. Based on how sensitive you seem to be, I'd suggest one drop (67mcg) of methylfolate every day or every other day along with 1000-3000 mcg of a sublingual B12. I've read in several places that only about 10% of B12 is absorbed if taken orally, so 1000mcg probably gets you about 100mcg into the bloodstream. Take it slow and have small doses of niacinamide (50-10mg) on hand in case you take too much or go too quickly.

 

lbee - I don't know of any specific meaning behind high B6. I think having levels is good so that you don't over-supplement. But some ideas to consider - if you're taking B6 in any form other than P-5-P, it's possible you're not utilizing your B6 well. So you could try switching to P-5-P if you're using something else. Or it's possible you're not methylating well somewhere else in the cycle and you're seeing a bottleneck. You could try addressing her mutations and then re-measuring to see what changed.

 

Sulfur is what's measured with the test strips. Ammonia levels are a blood test. I don't have a doctor who knows this stuff (it's my kids' doctor who helps me with them but he can't order tests for me). So I go by odor. If urine reminds you vaguely of a diaper pail, or even any sort of pungent odor, then ammonia may be an issue. If taking yucca or roselle (hibiscus sabdarifa) for a week makes that odor go away, it was probably ammonia.

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Thank you muchly! The methylfolate and hydroxycobalamin arrived yesterday so I've made a start on them (1000 mcg B12 and for now 67mcg methylfolate, as you said). Wish me luck. I've got some 50 mg niacinamide in the cupboard in case of accidents - that is a very useful thing to know!

 

By the way, anyone else dealing with these issues in the UK might be pleased to hear that Holistic Heal are no trouble at all to deal with - I ordered those two things online on the 20th and they arrived yesterday, quick service. They did charge a $16 (~£10) shipping fee but I've seen worse.

 

I see your point about the test readings - it would be suspicious if they gave precisely the same reading each time - but actually the test strips are not at all precise - they only really distinguish 5 values, 0-200, 200-400, 400-800, 800-1600 and >1600. So all my readings are really saying is that it's consistently somewhere between zero and 200. All the same, I actually got suspicious enough to test them today, in case they'd somehow gone bad - I had an old jar of Epsom salts, which is magnesium sulphate, and dipped one in a solution of that. It did react to that, so that's reassuring!

 

Lbee, from what I've read, whether to use hydroxy or methyl B12 depends simply on whether you're over- or under-methylating - methyl B12 if you haven't already got too much methyl stuff, hydroxy or adeno if it's possible you have. What has your daughter got on COMT mutations? Those are among the main things that bear on methylation (LLM explained some of that above). I've got COMT +/+ in two different places, so I'm on hydroxyB12 and being very cautious even about methylfolate (there's unfortunately no non-methyl substitute for that so you just have to be careful with the dose).

Edited by Wombat140

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Just got my report. I'm confused about one thing:

When I am COMT -- on all genetic genie COMT, which is what heartfixer.com seems to be going off of but I have ++ COMT RS165722 on Nutrahacker report, am I to consider myself COMT + or -? It seems to make a difference on protocol for CBS +-, when you're COMT + or - on heartfixer. So I'm confused on which I should consider myself.

Edited by citygirl

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Hi, sorry I didn't say anything before, been a bit wiped out. I've just been looking it up in the two documents (the Heartfixer one and Genetic Genie's accompanying notes). Both of them define COMT +/+ as the version that breaks down neurotransmitters more slowly - so a +/+ in Heartfixer equates to a +/+ in Genetic Genie and presumably to a -/- in Nutrahacker, which must be defining it the opposite way round (I haven't used Nutrahacker myself so don't have their accompanying notes if there are any). So you are what Heartfixer calls COMT -/- i.e. you should be able to take methyl-donor supplements without ill effects.

Edited by Wombat140

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