Methylfolate going nowhere, should I go straight on to B3 (for COMT/MAO)?

[Wombat140]

Hello, sorry if you've already seen this - I posted it at the end of my other thread but as there haven't been any replies so far I got worried that perhaps nobody'd realised that it was a new question.

 

(N.B. Please have a look at http://latitudes.org/forums/index.php?showtopic=23917, or at my sig, before you answer so you know what the situation actually is :-) )

 

I've tried methylfolate and hydroxyB12 yet again, this time at a QUARTER of the supposed minimum daily starting level of 67mcg, i.e. 17mcg methylfolate and 250mcg hydroxyB12, taken every other day. After four days (two doses) of this, the situation seems to be that I'm getting a lot more emotional about things on the days I've taken it, but the OCD symptoms are no better. Terrible things keep happening.

 

I suppose it's possible that I already am getting enough methylfolate, despite my mutation, since I eat a lot of whole grains and, since giving up animal products for the CBS thing, a lot of nuts, and I've heard that the folic acid in food is in the form of methylfolate. (Is that true?)

 

Do you think it would make sense to give up on that for the time being and try the niacin, Vit D etc. (for the COMT and MAO mutations)?

[LNN]

I personally think the body should always be the guide on supplements. If you don't like how you feel, then stop. Given your mutations, I wouldn't be surprised if at some point, you find a little methylfolate helpful, but it sounds like now is not the time and as you say, maybe you're getting enough from your diet.

 

It sounds like moving on to COMT makes a lot of sense. Do stay on the B12 you've started. Your signature doesn't give your VDR so you'll have to rely on Heartfixer. I understand you have issues over blood draws but ideally, you'd have your Vitamin D levels checked before starting anything. Since I'm guessing that's not available to you, start at a "lower" dose of 1000 IUs, or given your sensitivity, maybe even 400 IUs. Give that a week just to make sure you don't have any negative reaction (you may feel nothing - IDK). Then add a little niacinamide 50-100mg. Try every other day to start, then move to daily if you find you feel better on it.

 

Personally, I'd only focus on COMT with adding D and niacinamide before looking at MAO. I don't know that any of this will help with the OCD but it should help with the anxiety. Good luck!

[Wombat140]

AAAAARGH... that's what they always say, but I don't have any anxiety so that doesn't get me far! No, not criticising you LLM, just the general way my condition always seems to find the most inconvenient-to-treat arrangement. Thank you very much for replying so quickly - I was getting pretty hot and bothered with all that's been happening.

 

So trying niacin/D without being on any methylfolate does theoretically work? Thanks, that's all I needed to know. I wasn't sure if it was a "never do this before you've sorted out that, or it'll be counterproductive" thing, like doing MTHFR before CBS. And I'll start with the D before the niacin, like you said. (Haven't my results handy right now, but I seem to remember I do have a VDR thing.) I've already got both of those in the cupboard which is handy.

 

Could be that adding methylfolate will be useful AFTER I've got settled in on the niacin - they sort of balance each other, don't they, so maybe it works both ways and I'll be better able to handle methylfolate once I've got enough niacin. No idea whether this is true, just idle speculation. Anyway the proof of the pudding is in the eating - wish me luck.

[Wombat140]

I've hit a snag again.

 

Took vitamin D for a week, no obvious change, so on Wednesday I added niacin - 50 mg to be taken every OTHER day. Thursday I thought things were a bit better - I was getting away with things that I wasn't supposed to be able to get away with. So this morning, Friday, I took my next dose as scheduled, and all today it's been absolutely nothing doing again. Any idea what's going on here, and what I should do? Do you reckon it's possible I might take two days to metabolise it or put it to use or something (after all, if I've dud enzymes you'd expect things to be slower, though I'm not sure whether in quite that way), and I should give it longer to work each time before taking the next dose?

 

I'm thinking of giving it 3 days instead of 2 next time and noting the result.

 

Also, why did you think the hydroxy-B12 couldn't be causing a problem? I mean, thinking about it, I started taking it at the same time as the methylfolate and I think I've always taken both together every time I've taken the methylfolate - so it seems to me that I've really no proof that it wasn't the hydroxy-B12 that made things worse those times and not the methylfolate at all. I mean, 1000 mcg is a lot of B12. I'm still taking the hydroxy-B12 every other day, the same day as the niacin, so this morning was actually a B12 morning as well as a niacin morning - so I'm suspicious about which of them it really was. That's if any of it was either of them, and not just random pigness.

[LNN]

If you're questioning the B12, then maybe skip that for a few doses and stay on the every other day trial of niacin (or niacinamide - which won't cause a flush). Ideally, you'd base B12 dosing on your homocysteine levels, but since blood draws aren't possible for you, you just have to go by how you feel. But only drop the B12 and stay on the niacin - otherwise, you'll be changing 2 variables at once.

 

I think it's premature to get discouraged about the niacin. Just because you felt better after the first day and didn't feel anything on the second dose, I wouldn't put too much emphasis on that. Stay on your every other day plan for a time - for two reasons. First, you don't want to change a second variable if you're thinking of dropping the B12. Second, it's not (so far) making you feel bad. And 2 doses isn't long enough to draw any conclusions.

 

I know you get frustrated when I mention anxiety, but isn't OCD an anxiety disorder? Aren't compulsions a way of alleviating the stress/anxiety? COMT +/+ would suggest that you're not breaking down anxiety-related neurotransmitters like ephinephrine (adrenaline). Your signature talks about not being able to do certain things, being somewhat ruled by what I'd call anxiety-driven aversions or fears? Maybe you're defining anxiety differently than I am? Not trying to be combative at all. I'm just confused and it's hard to suggest options if I'm not understanding how these things are getting better or worse with the changes you're trying.

 

Anyway, just my two cents. Stay on the D and the niacin(amide), see how you feel without the B12. But I'd also give some really serious thought to trying to get a blood draw to check your D levels, your homocysteine, maybe your ammonia levels and other things. I believe in using the body as your guide, but sometimes, numeric data can cut to the chase and give you invaluable guidance instead of throwing spaghetti at the wall to see what sticks. This has to be so frustrating for you.

[Wombat140]

No, no, no, no and no. Sorry. I just have to do the things - there is no reason why I have to do them. If I don't do them when the situation requires me to do them, my brain just screams at me harder and harder until I do. Pretty much like Tourette's, except that they're in response to particular external things rather than just random.

Actually, the theory that it's all caused by anxiety seems to be going out of fashion; they're suspecting now that it's just that the ones who have thoughts associated with their compulsions (I don't) have a lot to be anxious about!

Yes, those neurotransmitters involved in COMT do cover anxiety, but it seems to me they cover just about everything else, as well. I'm inclined to blame dopamine, myself. I've seen dopamine described as "the seeking response", the state of being trying to achieve a goal - and it does seem true that if you put a task in front of me, I can't leave it alone until I've finished, whether I'm supposed to be doing it or not - whether that's a compulsion, a mission in a computer game, or reading on and on when I'm supposed to be going to bed (and when I'm as eager to get to bed early as everyone else, too). I think I've posted somewhere here before about my inability to get to bed on time!

 

Anyway, musings aside, good point about not stopping both at once. I've stopped the B12 but kept taking the niacinamide. Things did seem a little better yesterday, in places. Oh dear, I suppose if the B12 WAS the problem, then that means I don't know the status of the methylfolate! Well, I'm not getting entangled in that again until I've accounted for the niacinamide and the B12, anyway.

 

 

I believe in using the body as your guide, but sometimes, numeric data can cut to the chase and give you invaluable guidance instead of throwing spaghetti at the wall to see what sticks. This has to be so frustrating for you.

It is, it is. Believe me, I'd LOVE to get a blood test done. But, apart from anything else, how am I going to get it? I don't think testing vitamin, homocysteine and ammonia levels are standard tests for anything in recognised medicine, are they? Our family doctor's sympathetic but I doubt if those would be among the standard tests she can order from the lab, would they? So we'd have to arrange it elsewhere somehow and I don't even know how - the PANDAS doctor I saw a few years ago is no longer practising, and he doesn't know of anyone else - and probably at my own expense, or rather, at my parents' own expense, and THEN go to the doctor's and fail to have the blood test done. I don't know. (I'm certainly not in any shape to make me any more likely to succeed than usual right now.)

 

Thanks very much for your advice.

[LNN]

In the US, checking Vitamin D and homocysteine levels are very common. My dr. orders them every year as part of my routine physical - and he's very mainstream. Done by any commercial lab in the US. Ammonia levels can also be checked by any lab but for this, some doctors would want to see outward symptoms before pursuing.

 

The only thing to be mindful of is that in the US, Vitamin D levels that are above 30 are labeled as in normal range but most integrative doctors say the levles should be between 50-100 and that 30 is still too low to lead to good health.

[Wombat140]

Ah? Now, that's very interesting. I'm really glad I heard that!

 

Just been doing a bit of rummaging around the NHS Choices website, and it seems that testing for vitamin D deficiency is quite a common thing over here these days. B12 and folate, at any rate, are also listed among the fairly common tests (the one because of pernicious anaemia and the other for pregnant women, I'm guessing). The only question, then, is whether I can convince our doctor to order them for me even though the symptoms I've got aren't (as far as I know) among the symptoms they're usually ordered for. I expect she'd be willing to try it if it were up to her, she's nice and she was a bit worried that she couldn't think of anything to do. I just don't know whether a G.P. has the authority to order tests that are completely "off-label", so to speak, for a mental condition, even though they're recognised tests in themselves. I'm not saying she hasn't, though; I just don't know. Only way to find out is to ask her I suppose!

 

(I know I should have looked at NHS Choices' website first, now I think about it. But though extensive it's very badly laid out - it's not like an encyclopedia that you can just use as a reference work and look up all the basic information about, say, vitamin D, it's more a collection of here's-our-advice-on-what-you-should-do-about-so-and-so pages; I usually only find what I'm looking for by opening all the pages that seem at least tangentially relevant, then following any likely links from them until I stumble on the info I'm looking for. So I tend to only go there once I've some reason to think there is something to find! )

 

 

If I did manage to have a blood sample taken, what would you - and anyone else here - consider the main things it should be tested for? Not just re the mutation stuff, but in general, too, for someone with a long-standing inexplicable brain problem? I'd be glad to hear as many views on this as possible, as so many of you have done the blood testing stuff whereas I know nothing about it.

 

Throwing spaghetti and seeing what sticks is exactly what it feels like at present!

[Wombat140]

Current situation is that I've been taking niacinamide 50 mg every other day for a bit over a week, and it's been worse than ever on days when I've taken niacinamide, and rather better than usual, able to get away with a few things and my brain let me, on non-niacin days. And then for the last couple of days it's been failing to let up on non-niacinamide days and just stayed at worse-than-ever. What would any of you make of that, in your experience?