Hello everyone, I'm new. I have severe ME/CFS plus a bundle of other things. I'm trying to get assessed for suspected POTS (Postural Orthostatic Tachycardia Syndrome), and also suspect a mast cell disorder and/or Ehlers Danlos Syndrome. I'm two or three specialists away from getting the latter two investigated, though, and we're talking NHS waiting lists as I'm in the UK.

I'm having particular problems with itchy skin at the moment, especially at night, and it's going together with sore eyes flaring up. I thought I had dry eyes, but my optometrist said not. Well, he says that both water and oil production are lower than they should be, but there are no dry spots on my eyes, so he thinks it's more of a nerve issue. Anyway, I think I was reading up on possible causes for the itchy skin (I'd been thinking mast cell, but maybe not), and came across the very long thread on B12 here. My brain is cotton wool at the moment, so I'm not sure how much of it went in!

Here is the medication I'm currently on. Yes, I still have painfully itchy skin despite this, but at least it's helping with the stomach pain which has recently flared up:

Antihistamines: 1 cetirizine/zyrtec and 2 promethazine/phenergan
H2 blockers: 2 omeprazole/prilosec and 2 ranitidine/zantac
Buscopan 3x daily for stomach pain

I've been prescribed Adcal D3 for low vitamin D, but since my welfare benefits came through, I've been buying vegan versions of that instead.

I've been vegan for many years now, and while I eat a nice healthy diet, I realise this has probably not done good things for my B12 levels.

I've been taking various multivitamins and other supplements, but am now tidying them up. B12 looks like a good thing for me to be on, and I've been reading up about it both here and on Phoenix Rising. This means an awful lot of details which I am too brain-fogged to understand, and no end of contradictions between the various theories. People seem to agree that I should be off folic acid, so I'm cutting out my usual multivitamin and B complex.

These are the supplements I'm planning on taking. Let me know what you think. Since single vitamins tend to come in higher doses than in multis, I'm not taking all of them every day, in the interests of keeping the doses and cost sensible. I originally put in links, but apparently I can't do those until I've written ten posts. Once I'm at that level, I'll put the links in, but meanwhile it's all easy to google.

* Biocare B-Plex - B-complex without folic acid or B12 - 1 at lunchtime
* NOW Full Spectrum Minerals - 1 at lunchtime
* Bluebonnet Beta Carotene 25,000iu Vitamin A - 1 a week at breakfast (I get plenty in my diet)
* NOW Vitamin K2 100mcg - 1 in the evening, four times a week
* Doctor's Best chelated magnesium 100mg elemental - 2 tablets over evening/bedtime
* Solgar Metafolin 800mcg - 1/4 tablet at lunchtime
* Jarrow Methylcobalamin B12 1mg - 1/4 tablet at bedtime, working up as tolerated
* Veganicity Lecithin 550mg - 2 capsules over breakfast/dinner
* Healthaid Natural Vitamin E 200iu - 1 capsule at lunchtime, twice a week
* Opti3 Omega 3 200mg DHA, 100mg EPA and 100iu Vitamin D3 - 3 capsules over mealtimes
* Vitashine Vegan Vitamin D3 5000iu - 1 capsule at lunctime, twice a week
* Home-made electrolyte drink made with an equal mix of sodium chloride and potassium chloride (aka low-sodium salt), 1/2 tsp per 800ml water bottle - drunk throughout the day, usually abour 2l or so.

I'm not including Vitamin C as I already get plenty in my diet, but might experiment with some once everything else has settled down.

I gather that the Metafolin and lecithin are important to go with the B12, at least according to the late Rich van Konnyenberg. Then there's Freddd, who is into very high doses and insists that adb12 should be included too, although the lowest dose I've found that in that doesn't include folic acid is 10mg. And everyone on Phoenix Rising says that the B12 should be used sublingually, otherwise it won't work, and here you say that you may as well take them orally. Considering that there are several pages of discussion about how using sublinguals can damage your teeth, including suggesting putting the tablets in every orifice bar the ears, I am feeling rather cautious about all of this. Not to mention confused!

I started on the B12 a few days ago, and have been feeling very tired ever since. Also hungry and thirsty - I drank 4l yesterday, which is definitely more than usual for me. I understand that some level of startup symptoms is normal.

With regard to testing, I've not had much done, and I've never been told the actual figures. Apparently my Vitamin D levels were low despite being on D2 for years, so I was put on the prescription D3 (400iu) and after that they came back as normal according to the NHS. I had a quick Google, and one NHS trust defined adequate as >50 nmol/L, while another defines replete as 70-150 nmol/L, and a third goes for 81-220 nmol/L. So I have no idea what my actual D levels were. I've heard that a lot of countries have reference ranges that are much too low.

I think they tested my B12 and that was also normal according to NHS guidelines. I'm having trouble finding those, but one website suggests 138 - 780 pmol/L.

I distinctly remember my GP commenting that the one thing that stuck out was that my folate was really high. She had no idea why, and at the time I googled to no avail. From reading the big B12 thread here, I learned that high folate can be a sign of low B12. That does make sense to me.

So:

1. How does my proposed supplement regime sound?
2. Am I going about the B12 business the right way? Metafolin and lecithin and such.
3. Sublingual or oral for the B12? If I take it orally, does that mean I need to take more?
4. How much D3 should I be taking? I've heard that taking too much can also be problematic, something about steroids I think.
5. I'm on the Jarrow B12, which everyone is moaning about elsewhere as apparently they changed it somehow, but I bought it over a year ago so it should be OK. Once it runs out, which brand should I get?

Thanks in advance.

P.S. I've got visual problems, so please don't use smileys or coloured fonts.