Anyone here got worse after taking vitamin D?

[Wombat140]

Has anyone here got worse after taking vitamin D? If so, what's your advice? Was it a "worse before it gets better" thing, or just genuinely worse?

 

I had a blood test a few weeks ago that showed I had a low serum vitamin D level (25 mcg/mol), so my doctor prescribed 20,000 iu vitamin D capsules twice a week to correct the deficiency (which works out at about 6,000 iu a day). (This is not a typo. I know that's a lot.) I took the first dose on Friday evening, and the second dose on Tuesday evening (two days ago).

 

For the last 3-4 days, my OCD symptoms seem to have been particularly bad. So has my chronic problem of taking ages to come downstairs in the morning and taking ages to go upstairs at night. I really don't understand how that works and I'm always trying to get on top of it, but with no success at all recently; I know perfectly well that I should be going upstairs, but I can't seem to stop myself from going on and on with what I'm doing. Also, for much the same period of time, there's been a reappearance of a weird thing I get sometimes where I get kind of haunted by a daydream or story I tell myself in my head - I get completely bogged down in it and go over and over it trying to get it right or to get it to feel right; I'll sit motionless for half an hour at a time, just going over this daydream - I can't seem to let go of it until I've resolved some unspecified thing (as you can imagine, this is not helping with the lateness!)

 

Yesterday (Wednesday) was particularly bad, and I started to wonder whether it was the vitamin D that was making things worse. And when I mentioned this to my mum she said she'd noticed it too and was thinking the same thing. And that was the day after I'd taken the second dose. (And my mum didn't know that, having lost track of the schedule.)

 

The only thing I can find in the Heartfixer Document about what vitamin D is actually supposed to do in this context is that not having enough inhibits dopamine production. Well, the thing is, I have COMT V158M +/+, COMT H62H +/+ and MAO-A R297R +/+ mutations, which all increase dopamine production. (An OATs test two years ago suggested high dopamine, too.) So I'm wondering if I had too much dopamine already and fixing the vitamin D deficiency, without anything being done about those, might just be making matters worse?

 

Anyway, as I say, has anyone here got worse on vitamin D and if so what's your advice? Thinking about skipping my next dose (tomorrow) and seeing if things subside at all. Do you think that's a good idea, or not? (Phoning the doctor probably wouldn't tell me anything - she doesn't know anything particular about mental illness, let alone how it's affected by vitamins, she's just my regular family doctor prescribing vitamin D because the test showed I was short of it.)

Edited December 3, 2015 by Wombat140

[NancyD]

High levels of D can causing herxing from Lyme. My DD was hospitalized a few years ago taking high doses - her levels were catastrophically low. She became very violent and psychotic-like. You may want to start low and slow and see how that goes. Currently, we are administering 2 drops of liquid D3 (2000 IUs) between her toes. We started out with one drop every other day and are building up slowly to 5 drops daily. I'm not sure how much is being absorbed into her body but it's better than nothing. Eventually we will try one drop orally.

[dut]

Hello.

 

My PANDAS ds seems to get worse on vitamin D. I can't say 100% that it happens as his symptoms are all over the place, on off etc but I do seem to see an uptick in all sorts of behaviors following vitamin D and fairly quickly after, even as quick as an hour or so.

 

Our PANDAS savvy ped said that was possible due to so much being affected in brain from vita D, and said for us to avoid it for now but try again later.

 

PANDAS dd does really well on vitamin D but she's way further along than DS. I'm wondering for her how much of a component it was on her appearing to have outgrown PANDAS over the last 12+ months, as the improvement correlated with consistent vitamin D dosing.

 

 

Can't offer any ideas why it may be bad at the moment for my ds or you tho', sorry.

 

Good luck...

[Wombat140]

Hmm, I have no idea whether I have Lyme disease (or any other infection) or not (can't get test). Food for thought, thanks.

 

So when you say "start low and slow", I've already started so would that mean stopping the high dose and then starting again on a low dose when things have subsided? We do have some 1,000 iu D3 tablets in the house (my mum takes them) so we have the wherewithal. (I'd probably best mention it to my doctor anyway when I can next get hold of her; unilaterally changing her prescription without telling her would be an annoying thing to do!)

 

Haha, I've never heard of that way of administering anything before but no reason why it wouldn't work!

 

One other question for peeps in general: I bought some copper tablets - copper is supposed to be needed to break down excess dopamine - but people on here said you should always get your zinc/copper balance tested before taking copper, and I can't get that test (my doctor can't order it), so I left it. Given that I'm not *going* to have the test, and if the flimsy chain of guesswork above is correct and what's happened is excess dopamine, is there a case for trying it in spite of not having the test, or is that unsafe in some way? I don't know anything else that lowers dopamine.

[Wombat140]

Dut posted while I was replying - thanks Dut, useful to know that. And I know what you mean about it being so up and down naturally that it's hard to be sure what anything is doing, mine's like that too! (hence why I was remarking on my mum and I both agreeing that it had got worse - not always the case!)

[LNN]

the thing with Vitamin D is that it's supposed to help your immune system and some docs say it's actually a hormone, not a vitamin and that it helps regulate sleep. S being deficient isn't a good thing. But as you suggest, until you can get your dopamine levels lowered, supplementing D may not be the right thing at this time. Or, as others say, maybe taking mega doses is less than ideal and smaller doses may be a better approach.

 

As for copper, 2mg daily is what's in many mutli-vitamins. So I'd think you'd be ok trying 2mg daily without testing, since testing isn't available to you. The other way to "test" is to buy liquid zinc (here's one example http://www.amazon.com/Designs-Health-Challenge-Liquid-Fluid/dp/B000FGXMAY/ref=sr_1_6?ie=UTF8&qid=1449171993&sr=8-6&keywords=liquid+zinc)

If you drink 10ml and it has a metallic, strong taste, you have plenty of zinc. If it has no taste, you're supposedly zinc deficient. Zinc and copper are opposites. So if you felt this drink had a strong metallic taste, you could assume you had plenty of zinc in your system and that supplementing with copper would be fine. (You may not want to supplement with copper if this liquid had no taste at all, as the copper supplement could make a zinc deficiency worse).

 

My understanding is that copper speeds up the MAO-A enzymes, which help you drain epinephrine (aka adrenaline) and dopamine. For COMT, niacinamide can help speed that up, also helping you drain dopamine a little faster. But I think you tried niacinamide before?

 

If you can get these enzymes working better, maybe supplementing with low dose Vitamin D would then be more beneficial than it seems to be right now. In the US, you can get drops in as little as 400 IUs per drop. Check Amazon for this as well.

[Wombat140]

Thanks for the quick reply, that was handy, and reminding me about the niacinamide too. (I'm currently taking 25mg niacinamide every other morning; at that time it seemed to help slightly and was the most I could take without making things worse, and trying to increase it any further has been on the back burner since then while I tried other things. I may come back round to that one.)

 

Must go, but will get on to that. May get the liquid zinc and try it while I'm about it - I've done that before but can't remember what the answer was. Thanks again all!

[bws1565]

Your description of yourself sounds like my daughter, or rather what she was. She was diagnosed with Lyme and Bartonella several months ago, first through blood, and then through muscle testing. We are treating her these, and she is really doing better. If you can find somebody who would be able to do muscle testing for your issues, especially if you can't do blood, you will be better on target.

 

She is currently taking, Japanese knotweed, Cats Claw, Zinc, Folate, B12, B6, D3, Digestive enzymes, Probiotic. She is off several foods.

 

 

[Wombat140]

Hmm, that's interesting information, thanks. It's now not so much that I can't do blood, but that having finally got the hang of having blood taken, just about, it seems my doctor can't order those tests anyway. (I'll update my sig, thanks for reminding me.) Would it be worth while going private?

 

I don't know if muscle testing would really work with me. Given that being touched tends to set my OCD off, and that my response to being "set off" is usually to violently jerk my arm or whatever is involved... I'd have expected that that would snooker things, would it?

 

If it was possible, how would you find a good practitioner to do it? I was corresponding with a well-known PANS homoeopath a while ago (nothing came of it in the end) and she was very keen for me to have muscle testing done before we started, and I kept asking her "How do I tell who knows what they're doing - there seems to be no trade association for them", and she kept saying things like "Go with what feels right to you"! Which seems to me like no way to run a railroad! Tests are no use if I've no idea whether they're reliable or whether the person is a complete fraud and is making it up as they go along!

 

Ha ha, I've heard "Japanese knotweed" mentioned in this context before. Is it really the same plant that we have here? If so, I can believe it kills all known germs, very little is a match for a Japanese knotweed plant once it gets going!

Edited December 4, 2015 by Wombat140

[bws1565]

Being extremely sensitive to touch, to the point of pain, would correlate with Bartonella.

You are right with your observation of trusting the practitioner. You really can't know if they "know what they are doing". I went with this particular one on recommendation of friends and a cousin of mine, whose son with a seizure disorder due to Lyme was cured by him. I did make myself a time frame of about 6 months to see a difference, and then I would move on. We are with him for about 5 weeks and are already seeing progress, so I guess we are on the right track:)

[bws1565]

I wouldn't know about what you have in England in terms of Japanese knotweed. We are using a tincure. She takes 20 drops twice a day.

[Wombat140]

 

Being extremely sensitive to touch, to the point of pain, would correlate with Bartonella.

Well I don't have that, anyway, or not really. Glad to hear you're doing so well, I hope it continues.

 

Do you know the answer to the question of whether the fact that I'm uncomfortable with being touched anyway would muck up the muscle testing results? Obviously if it would, then there's no point in investigating that any further!

[bws1565]

Not sure. Muscle testing requires you to hold your arm upright and the practitioner would try to push it down while testing for foods etc. DD is very sensitive to touch (she will not brush her teeth or allow anyone to kiss her...) but she does not really have a problem with this. She will sometimes wiggle while being tested but nothing more than that.

[pr40]

on vit d. we have similar Mao and Comt mutations to yours. I find that the roundabout way with vit d works better for us, using fish oil. so, we no longer take vt d at all but do fish oil instead. i forget what the mechanism is exactly that fish oil helps with vit d.

[Wombat140]

bws1565 : Thank you very much for answering my question, it's appreciated. That's slightly encouraging then. I think it would depend just what state my OCD is in at the time; I couldn't manage it at the moment (it's been bad the last few days), but if it settled down to what it has been for a while before that, I could manage it. It's just the question of whether being on edge about it, even though I could manage to let them do it, would invalidate the results, and what you say about your daughter suggests not. I'll look into that - it occurs to me that the local homoeopath I used to see might be able to recommend someone.

 

Pr40: I never heard of a connection between vitamin D and fish oil. Wouldn't the connection just be that it has got it in it? Fish oil definitely does contain a lot of vitamin D. I'm a vegetarian anyway but I do take this stuff called Green Pastures Butter Oil which is supposed to have a lot of vitamin D likewise, though it's expensive. (I've been taking rather small amounts for that reason, equivalent supposedly to 500-1500 iu a day, maybe I should increase.) (It seems to be a sovereign remedy for slightly dodgy teeth, too.)