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Need advice about CBS (sulphur) diet/supps


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I've got my 23andMe results back and run them through GeneticGenie.com (thanks so much to the people who recommended that website). Quite a lot showing up, but apparently if you have problems with the CBS sulphur-metabolism gene you should start by dealing with those. (I have +/- in each of two different places, which according to the Legendary Heartfixer.Com Document is enough to need dealing with).

There are a few things it would be a big help if somebody would clarify for me:

1) How long does it take on the strict diet (and molybdenum etc.) before the sulphate levels come down and you can start trying adding things back in? The initial dietary recommendations are pretty extreme - I'm not sure it would be healthy to restrict protein that much for a really long time.

2) Is gluten a problem? The Heartfixer document is puzzling, it lists "Brown rice, non-gluten grains" among the things that are safe, but doesn't mention wheat or gluten on the list of things to avoid!

3) How soon would you expect to see results in terms of less symptoms (as opposed to just a change in urine test results)?

4) What's the "maintenance level" been for you? I mean, how far were you able to return to a normal-ish diet once the initial phase was over?

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great questions.

my family has the mutation and my guess is that the answers you are looking for are a) individual (we are not just that one mutation, we are young, old, execrize, etc.) and B) impossible to mesure in any other but a very subjective way.

 

positive result is that methylation cycle functions well enough. so, I think that you should try molibdenum every day with easy to do reduction in sulphur intake from food sources.

We never reduced meat since grains give us other problems. We are now on one pill a week. DS has a strong reaction to molibdenum the next day.

It's a balancing act and all you want to do is avoid falling

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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

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Thank you very much for the advice, both of you.

 

pr40, when you say your son has "a strong reaction next day" to molybdenum, do you mean positive or negative? (I tend to assume the worst these days - I've just about had it up to here with "gets worse before it gets better"!)

 

Very good point about seeing whether you actually do have a problem first. But I do mortally hate "try things out and see what works for you", because I can never TELL what works for me, in any reasonable length of time. My symptoms don't really vary fast enough to tell whether what I've eaten that day affects them or not - it's mainly of the OCD type, where things are usually ingrained and take a bit of persistence to shift even once it becomes possible to shift them; it normally takes weeks to tell whether things are better or worse. I haven't had any tests done for anything because I have a needle problem, and the smell of my urine is no guide to anything for reasons I won't go into. I *have* ordered a packet of sulphate test strips, though, and I'll see whether they actually show anything before trying anything tiresome. That's one thing I do like about this, for once there is an easy way to test whether it's making any difference, at least chemically!

 

I did the GF/CF diet for 10 months once and didn't see any lasting change in my symptoms, though I DID, weirdly, have all the withdrawal symptoms at the beginning! Do you think that means I don't have a problem with gluten, or could it still be different if I was doing sulphur as well? (As mentioned above, blood testing isn't on the cards.)

 

I know it's not necessarily any guide, but how long did it take for *you* to see a change? It'd be useful to have some rough idea because if I knew how long I might need to keep it up, I'd be more able to judge how strict to go with the restrictions.

 

Did you see any actual changes in symptoms after starting to deal with the sulphur stuff, or did the results not become apparent until you'd also addressed MTHFR etc.? Just curious. I'd like something to happen now. Oh, God, how I'd like something to happen now...

 

Thanks again!

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Well, the three people in my family who have CBS issues don't have Pandas, so it's not like treating CBS helped with any Pandas symptoms for us. For us, it's been an overall improvement in feeling better, and possibly with longer term heart risks. I personally felt nor smelled any improvement from molybdenum, even after taking it for many many months. I still take it a few times a week because it's supposed to be good for me, but it's not in my daily routine any longer.

 

I did feel a noticeable improvement from the Roselle after about 2-3 weeks. The Yucca worked more quickly - 1-2 days - but I use it only every few weeks wen my diet has tipped toward a lot of protein or sulfur and use the Roselle now on a regular basis.

 

I'd love to say "if you see no improvement in 3 weeks, that's long enough". But it's more likely that if you do one thing (e.g. reduce sulfur foods) and see no change, then maybe it's that you haven't done enough. Maybe if minimal change, you'd need to take another step, add a second or third supplement, etc. It'll most likely be a cumulative result rather than any single thing being "the" answer.

 

But...that's more true for CBS than the snps that directly influence neurotransmitters, like MTHFR, COMT and MAO-A. For these three, I saw improvements in my kids' moods within 1 week and then it took a few additional weeks to tweak dosing, but I knew I was on the right track. My DD needs a tiny dose of l-methylfolate to control her rapid mood swings. My DS needs extra niacin to help his anger due to COMT and MAO-A. Others have said they saw noticable changes with Vitamin D due to VDR Taq.

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Thanks LLM, you're a star. It's a nuisance it being that way, because I suppose you then have to keep on with the CBS stuff without knowing whether it's necessary or not. Still, there is the urine test thing - I suppose that would show whether it's working, as far as the chemistry goes, whether the symptoms have improved yet or not.

 

I'm ++ for MAO-A and ++ for each of two kinds of COMT, so will have to look up/ask you about what to do with that in due course as I'm still not clear!

 

It's a big relief to me to see these results, anyway, I have to say. Beats turning up negative for everything and wondering vaguely if it's supernatural, or just me being dense in some way, that with a supposedly perfectly healthy brain I'm forced to do ALL THIS RUBBISH! At least there now is something tangible to point to and hopefully do something about!

Edited by Wombat140
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My dd12 and I are both +/+ for both COMTs, MAO-A and 1298 and +/- for CBS so we're kind of in the same boat. Yasko's current approach is more to address COMT first by balancing GABA/glutamate. And like LLM said, not everyone is going to have the same reaction to sulfur, ammonia, etc. in the body. Use the test strips to determine sulfur for sure.

 

However, everyone can benefit from getting junk out of their diets. For my family, we already ate organic and all natural so it was very frustrating to see some of my daughter's OAT results which showed high aspartate and glutamate when she's never even had nutrasweet or MSG in her life. Her body just doesn't process the naturally occurring amino acids very well. And we were already eating dairy, gluten and egg free to try to help her ADHD. So I feel like we are doing as much as well can with the diet. We just have to find the "key" to the right "lock" to get everything moving in her system.

 

We've been supplementing with GABA and lithium orotate low and slow for a few weeks and haven't seen any change at all but I know it takes a while for GABA to build up in a system. But it is so frustrating to feel like you are doing all of this for nothing. I'm going to give it another few weeks before we add anything new but I do feel like I am sitting on my hands just waiting. Neither of us has ever really responded quickly to any supplement we've ever taken so that is harder. I just keep thinking there is a magical dose out there that we haven't hit yet.

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COMT and MAO both serve similar functions - they are the drain plugs for your body's puddles of fight/flight neurotransmitters. When you're threatened (or perceive a threat - real or otherwise) you generate/release higher levels of epinephrine (aka adrenaline), dopamine (a reward/reinforcing/motivating neurotransmitter) and serotonin. But you can't stay on high alert forever. So COMT and MAO are there to help your body return to a normal state of relative calm. They degrade the neurotransmitters and act like a drain that lowers the levels of these high alert messengers. If you have normal COMT and MAO, then you're one of those cool as a cucumber people in a crisis. If you have variants that make these genes run slower than normal, then you tend to stay jacked up longer than the people around you. You may "fall apart" during or after a crisis.

 

Slow running COMT and/or MAO makes you prone to worry, anxiety, quick temper, and health problems associated with high adrenaline levels (like heart problems). An astounding number of prison inmates suffer from MAO mutations and their quick tempers and tendency to see things in terms of predatory threats may have something to do with their incarcerations. It's possible COMT may play a role in OCD but it's probably not the only gene involved.

 

So what to do? Cognitive behavior therapy helps. So does taking supplements or consuming a diet rich in elements that help these two genes produce the enzymes that upregulate them or help them work a little faster/better. Niacin (Vitamin B3) helps produce more COMT enzymes and can have a calming effect on "over methylators" who likely have more adrenaline than they need. Niacinamide is even better as a supplement because niacin will cause a "flush" which is uncomfortable but niacinamide is flush-free. (However, the flush helps release histamine and it does open the capillaries, which is good for circulation, so if you can tolerate the flush, it's not without benefits).

 

Vitamin D also plays a role in COMT, so re-read Heartfixer for more advice there, depending on your VDR status.

 

Copper can upregulate MAO-A. So if you're MAO +, make sure your zinc/copper ratios are good. (too much copper can cause a host of issues, so it's about balance here). You'd want to avoid any medication that's an MAO-I (MAO inhibitor) including OTC cough and cold medicines. (they'll often carry a warning on the instructions saying do not take if you currently take an MAO-I). Curcumin/enhansa/tumeric is also an MAO-I, so avoid that as well.

 

Being COMT and MAO +, you'll probably see nice changes by adding niacinamide (start with 50-100mg and go from there), balancing vitamin D intake, and making sure you have enough copper and avoiding foods/medications that are MAO-Is.

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wombat asks "pr40, when you say your son has "a strong reaction next day" to molybdenum, do you mean positive or negative?"

negative, unfortunately. the day after that he calms down and, usually, improvement seems obvious.

i give it to him in the evening, usually Fridays, to lessen the impact on how he does in school.

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As usual, LLM, you are a genius at taking all the information and making it sound so "easy." I've been reading and re-reading everything I can find and just can't put it into plain English that my fogged and very tired brain can understand. Thanks!

Edited by mmiglio
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Yes, thanks v much LLM, I'm feeling the same - struggling to put all the pieces together with my head in the state it is, so a boiled-down version like that is worth its weight in gold! How much copper is your daughter using? The usual 2mg, or less, more?

 

Haven't started the CBS round yet as not all the supplements have arrived, but will as soon as they have.

 

I've just noticed what you said about addressing the other mutations (MTHFR, COMT and MAO) sometimes showing effects within a week. Well that is a very nice thought! :-)

 

By the way, this is what I have on the MTHFR side of things:

MTHFR C677T rs1801133 AG +/-

MTHFR 03 P39P rs2066470 GG -/-

MTHFR A1298C rs1801131 TT -/-

MTR A2756G rs1805087 AA -/-

MTRR A66G rs1801394 AG +/-

MTRR H595Y not found n/a not genotyped

MTRR K350A rs162036 AA -/-

MTRR R415T not found n/a not genotyped

MTRR A664A rs1802059 AG +/-

Does that constitute a MTHFR thing, or not - and if so, in what direction? Can't work out how much is enough to be important, or whether some are more important than others (I know CBS C699T is more important than CBS A360A). Too many SNPs for my limited brainpower to process.

Edited by Wombat140
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How much copper is your daughter using? The usual 2mg, or less, more?

 

By the way, this is what I have on the MTHFR side of things:

MTHFR C677T rs1801133 AG +/-

MTHFR A1298C rs1801131 TT -/-

 

Does that constitute a MTHFR thing, or not - and if so, in what direction?

 

My DD doesn't supplement with any copper. Her levels have always tested fine without it. My son sometimes supplements with copper when we remember, because he takes high doses of zinc for pyroluria and so we need to keep copper in balance. When we remember, he takes 2mg. But if he takes it with other supplements, he gets very nauseous. He needs to take it with food and away from other supps. So we tend to forget, because other supps get taken in the a.m. as part of our morning routine. Copper gets taken at dinner and often dinner isn't as structured as our mornings, so it slips. But supplementing should be based on zinc/coper balance and I realize that's hard for you with the needle phobia. Not sure how to advise you on that.

 

The 2 MTHFR snps above are the ones to focus on. Not that the others are irrelevant, but no literature on them. C677T is said to affect the forward cycle - the changing of homocysteine into cycteine and ATP. A1298C is said to affect the BH4 cycle and the production of serotonin and dopamine and also gut issues. But that isn't our case. My DD has C677T and small doses of methylfolate get rid of her bipolar moods. So it clearly affects her neurotransmitters.(she takes 67mcg every other day, adults often use between 400-800mcg - use Yasko's liquid methylmate B from Holistic Health so you can tweak dosing more easily until you zero in). You might want to introduce hydroxyB12 sublingually as well.

 

Having MTHFR C677T +/- does alter my advice above regarding how much niacinamide you might try. You may have less tolerance for higher doses of niacinamide. My DD (age 10) does better on doses under 50mg because niacinamide is a methyl user. As an undermethylator, she has fewer methyl donors to begin with. So we use less niacinamide with her than with my son, who has normal MTHFR. Start slow and low, then give it a week and adjust as needed.

 

Again, only introduce one supplement or variable at a time. Best of luck!

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Thanks LLM, it's great to have it "in a nutshell", tired enough at the moment that I really appreciate having the analysing done for me! Hah, could have sworn it was your daughter that was on copper.

 

Anyway, I'm posting again because things have gone a bit wrong. I've been on a cut-down version of the Heartfixer.com regime since Monday (the 10th). I'm a vegetarian anyway, but I cut out eggs and dairy completely, except for butter and a little bit of cream with puddings for a treat, also onions, cabbage, peas, soya and raspberries (those being the only other things from Heartfixer's list that I ate); . I also started taking a multivitamin and mineral and 3mg of boron. (Molybdenum & vit. E haven't arrived yet or I'd have done those.) Thought I'd better do a thorough job so I could be sure whether it was working or not.

 

Well, since the 13th (Wednesday) my symptoms (OCD-type stuff, see sig) have been particularly bad. Is it possible for there to be an initial aggravation of symptoms themselves on this regime, before improvements start? Heartfixer does mention "detox symptoms" but only in terms of fatigue and so on. Or could it be something to do with the supplements? The multi does contain B6 and folic acid, which you're not actually supposed to have too much of with CBS and MTHFR mutations, so I stopped that (and the boron) the day before yesterday but no let-up so far.

 

Also very dark stools since the day I started this - I wouldn't have said "tarry-looking" like they always say in the side-effects leaflet, or as if it could be because there was blood in it - it looks more like mud - but the difference is very noticeable. Only other time I've seen it like that was after I'd been taking daily ibuprofen for a while, and I stopped that and it went away.

 

If this is a thing, how long might it take to let up - days? Weeks? And is there any way to moderate it, e.g. by partly compromising the diet? The way it is now is really hard on my parents (and me).

 

 

The other thing that's puzzling me is the urine sulphate. When I started this regime the testing strips came out at 800 mg/l or maybe a bit over (it's a bit rough and ready). Well, when I tried yesterday and today, they seemed to be showing zero. Is it possible for it to change that quickly? (in urine, at least. I know Heartfixer.com reckons it can take a while between seeing results in the urine test and seeing them in symptom improvement.)

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First, realize I'm just a mom, with no medical expertise other than personal experience. So this is just my opinion...but I'm not one who's big on eliminating whole swaths of food without a really good reason. Having a CBS mutation doesn't mean it's expressing. If your strips were 800 to start with, I'm not sure a drastic diet change was needed, especially as a vegetarian who needs sources of protein. Protein is vital for our bodies.

 

In your situation, I think you'd be better off resuming your normal diet and maybe using an intermittent dose of Yucca (which is great for lowering ammonia but is estrogenic and shouldn't be taken for more than 3 months straight) or l-ornithine (with or without l-arginine). L-ornithine is used by hospitals to lower ammonia in cases of hyperammonium. It's the rate limiting amino acid in the urea cycle, meaning you'll only make as much urine as you have l-ornithine. l-ornithine uses ammonia to create urine. So more l-ornithine=less ammonia and more urine. A typical dose for my daughter is 500mg arginine/250 ornithine taken 1-3 times per day depending on her health and urine output.

 

Given your diet restrictions (vegetarian) and your not so high starting sulfur levels, if I were you, I'd resume normal diet and take l-ornithine if your urine has a strong odor to it. (similar to the smell of a baby's diaper pail).

 

As for the multi - I'd suspect that's behind the negative things you've seen. For starters, with MTHFR (if it's expressing) you need to avoid folic acid. My kids had to forgo the convenience of a multi-vitamin and instead take separate supplements for the things they need. It means more pills to swallow, but most multis contain things they can't tolerate. Instead, start out with a good B Complex that doesn't have any folic acid or folate or folinic acid in it. My daughter uses this:

 

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.

 

B12 - She gets andenoB12 from this http://www.seekinghealth.com/adeno-b12-60-lozenges-seeking-health.html and

 

Methylfolate from here http://www.holisticheal.com/methylmate-b-drops.html one drop = 67mcg of methylfolate. This lets you make small changes in doses until you find the right dose for you. If you later find out you need 400mcg or 800mcg, you can switch to tablets. But if you need 67mcg or some multiple, but not as high as the tablets, this product lets you dial in. My DD only needs 67mcg every other day.

 

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.

 

To recap, if it were me,

  • Resume normal diet.
  • Stop multivitamin and boron.
  • Add 1 drop methylfolate every day plus one sublingual B12 for a week and see how you feel. Tweak dose of methylfolate up or down as needed. If you feel nothing from one drop, go to 2 drops/day. If you feel moody or upset on one drop per day, drop down to every other day. If you get manic or bipolar on any particular dose, take 50mg of niacin as an antidote.
  • Once you think you have your methylfolate/B12 doses balanced, then search for a B Complex that works for you. Make sure it does not include any folate.
  • Then worry about the other snps.

Not everyone sees the amazing results I've seen from addressing methylation. But most parents who do see good things see them pretty quickly. They also see some bad things pretty quickly if it's the wrong dose, the wrong type of supp, etc. Be patient. Having bad responses isn't a bad thing - it tells you you're sensitive to small changes of what's going into your body, which is great, because it suggests that if you put the right balance of things into it, you might see good changes.

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I've been looking for a b complex without folic acid and b12 and saw this one but that seems like a very high dose of niacin... or is that a typo on the website??

 

Do people who are COMT +/+ with VDR Taq +/- who aren't supposed to tolerate methyl donors at all (according to Yasko's chart) need small amounts of methyl folate?

Edited by mmiglio
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