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-   -   Sorting out a B12/supp regime for severe ME/CFS (https://www.neurotalk.org/vitamins-nutrients-herbs-and-supplements/187287-sorting-b12-supp-regime-severe-cfs.html)

Batik 04-21-2013 08:57 AM

Sorting out a B12/supp regime for severe ME/CFS
 
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.

mrsD 04-21-2013 11:24 AM

Welcome to NeuroTalk:

Please get your actual numbers for the B12.... that range you posted is the old one that goes down too low.

Get me the concentration designation as well... pg/ml or nmol/L? Or whatever it is.

Being vegan is a risk factor for low B12. High folate serum readings usually come with low B12.

The sublingual will work orally...just chew it up and swallow with water. Oral will work but you have to take it on empty stomach with no food for an hour after. First thing in the morning is best.
1/4 tablet of 1000mcg will provide about 3mcg only. The rest is not absorbed.

All those acid blockers are also going to prevent B12 from food from being absorbed, but you don't eat animal sourced foods anyway? Acid is required to break B12 out of protein so intrinsic factor can attach to it. So the issue is not as great for you. I really think you are going to need 5mg methylB12 daily... at least for a while.

Your D3 dose would be based on what level you have at testing.

We have a person, Sally, on our PN forum here who had CFS...so post there, and ask her what she thinks.

http://neurotalk.psychcentral.com/forum20.html

Batik 04-21-2013 01:20 PM

Hi, and thanks for the speedy response!

I'm slightly nervous that I'll get grilled if I ask for my results, but I suppose it's not a big deal to ring up reception and ask them to dig them out. Normally they just pass on the message "it's normal" and tell me that's all the doctor said to them. The tests were run a year or so ago.

I do know about taking B12 on an empty stomach, yep. At the moment I'm going for evenings as they are making me tired, although last night I tried that and then couldn't get to sleep for a while. I'll see how it works out.

Am I right in thinking that you end up absorbing less if you take it orally than you do sublingually, so it's likely to end up being a higher dose? Or is the whole sublingual thing a red herring? They do get rather intense about some things on PR, I've noticed.

I've not been on the H2 blockers for long. I do wish they'd run some investigations into why I'm getting all this stomach pain and itchiness, instead of just bunging me on more and more meds, but that's what tends to happen when you have ME.

Any idea how fast I should increase the dosage of the B12? And is there any type of reaction which is a sign that I should back off, rather than waiting it out?

mrsD 04-21-2013 02:05 PM

Sally is a very nice person, and she is very helpful and nice to everyone at PN here.

Have you been to hummingbird's blog? Her father posts here and often links to that.
http://www.hfme.org/apps/blog/

The sublingual thing is a historical dosage form, because it was thought that B12 could not work orally. (in reality it has to be in very high doses to work orally). But the B12 molecule is huge, and the area in the mouth, small, and only smaller molecules with lipid affinities get thru easily. It is now thought that the B12 dissolves in the saliva and you swallow that. So yes, it is probably a red herring for sublingual use. Places still make it that way mostly out of habit, because people expect it. But studies show oral will work equally compared to injections and sublingual.

I used 5mg of Puritan's Pride methylB12 for about 3 -4 months, once a day and then got tested. (I wanted to see if this new item at Puritan's was of good quality). My result was 1999...which was the highest that hospital could test at --due to calibration limits on the machines. My normal level is around 800 without supplements. So you can see oral does work!

If any food or fiber is present in the intestine where B12 is absorbed, it will act like a sponge and keep the B12 from getting to villi where absorption takes place.

Chronic itching can come from gall bladder/liver disease, lymphoma, gluten intolerance and drug reactions. Are you using any ACE inhibitors for blood pressure? They can cause skin symptoms too.

Batik 04-21-2013 03:00 PM

If that's Sallyblooms, I already know her a bit. Thanks for the recommendation, I'll drop her a line.

I did look at Puritan's Pride, but international shipping is a bit tricky. If I spend more than £15 then I'm liable to be hit with a £11 customs charge, and the really good deal at PP is the five bottles of 5mg for $25, which is over the £15 limit. Swanson, Solgar, Source Naturals, Bluebonnet and Jarrow are brands I can get fairly affordably over here, at least judging from Amazon; there may be a few more lurking somewhere.

My gall bladder was removed a year ago. It sounds like I should be asking for some tests to be run, at least if the itching hasn't cleared up in another week (the doctor told me to give the new antihistamines a couple of weeks). Any idea what I should ask for? I did see a dermatologist in August, but she was a bit clueless, told me erroneously that dermographism (which I do have) doesn't cause itching, wasn't interested in looking into mast cell stuff, and concluded after seeing me that I was getting itching from codeine, not knowing that I very rarely take it and haven't taken it in months. I'm not on any blood pressure meds, though I'm due to see a cardiologist in a month. My BP is normal on average, but leaps about all over the place, including going down as low as 75/40 that I know of. The post at the top lists all the meds I'm on, though I do occasionally take tramadol, paracetamol and/or diazepam for pain relief. As for gluten intolerance, I tried going gluten-free for a year a while ago, and it didn't seem to make any difference. So eventually my GP ran a blood test, said I was fine, I went back on the gluten, and apart from a slight adjustment period both times, there was no difference.

The itching follows certain patterns: worse at night, worse on my legs in the evening, occurs together with dizziness, sweating, nausea blacking out etc. if I stand up and keep still. Hence trying to look into mast cell problems.

mrsD 04-21-2013 05:54 PM

Another thing connected to dermographism is angioedema.

Here are some links:
http://www.haea.org/

http://www.hcplive.com/publications/...-04/2005-04_02

HAE will also cause abdominal pain.
This is what I have been diagnosed recently with...and I have to
go to an immunologist soon (after my drug induced lupus and AE
simmer down from lisinopril), for further testing.

You can search for more yourself, as you read these two very good sites.

Angioedema often does not get diagnosed until a crisis, which is what I had, recently.

The HAE site gives the blood work needed, so your can pass that along to your doctors.

I didn't have itching so much as burning stinging. Also swelling of the affected areas.

So please do look at these two links.

Batik 04-21-2013 08:31 PM

Yikes. I don't get upper airway problems, thankfully. When I have breathing difficulties, e.g. after standing up, it's the lower airways.

I'm also noticing more problems with the parts of my body which are resting against the mattress developing a mild burning sensation. Feet and buttocks, mainly. I've had this occasionally for years, I'm just noticing that it's happening more at the moment.

Apart from getting hold of those old nutrient test results, any idea what I should be asking the doctor to check? As I said, the dermatology trip in August wasnm't particularly productive. I was pretty ill at the time, I collapsed in the hospital (and a few times over the next few weeks), then a week later my then-partner left me, so that kept me too busy to follow up the dermatology thing. I remember the dermatologist saying vaguely that lots of things can cause itching, running some blood tests, and then writing to me to conclude that it must be caused by the codeine (which I wasn't actually taking!). The itching is burning/stinging when it's bad.

I'm looking up causes of itchy skin at night and there's some scary stuff in there. I doubt it's menopause, I'm 35 and my mother didn't go through menopause till her 50s. I don't t think I have dry skin or anything biting me. I wonder when my thyroid was last checked - I've been really cold (multiple layers of clothing, lots of quilts on the bed, often the electric heated blanket too) for a while now, pretty much the last year. My cousin had non-Hodgkins lymphoma when she was 19, though she's fine now. Other info - I'm white British, Ashkenazi Jewish family. I'm already very careful with toiletries and the like and use very simple, unfragranced ones, wear cotton and so forth. The skin looks normal.

pabb 04-22-2013 08:47 AM

Quote:

Originally Posted by Batik (Post 977107)
If that's Sallyblooms, I already know her a bit. Thanks for the recommendation, I'll drop her a line.


My gall bladder was removed a year ago. It sounds like I should be asking for some tests to be run, at least if the itching hasn't cleared up in another week (the doctor told me to give the new antihistamines a couple of weeks). As for gluten intolerance, I tried going gluten-free for a year a while ago, and it didn't seem to make any difference. So eventually my GP ran a blood test, said I was fine, I went back on the gluten, and apart from a slight adjustment period both times, there was no difference.

The itching follows certain patterns: worse at night, worse on my legs in the evening, occurs together with dizziness, sweating, nausea blacking out etc. if I stand up and keep still. Hence trying to look into mast cell problems.

If you were tested for celiac after being gluten free for a year the tests were worthless! Gall bladder issues are common in celiac, and there is a common skin rash which is itchy that is asso. with celiac.
http://www.ou.org/shabbat_shalom/art...wish_community
There is also a higher risk in celiacs for lymphoma.

Batik 04-22-2013 09:24 AM

Results!

Vitamin D, I think from a couple of years ago (after I was put on prescription Vit D): 43 nmol/L (reference range 25-170 nmol/L)
B12 in 2008: 520 ng/L
Folate in 2008: >24 mcg/L (i.e. their testing only went up to 24mcg/L)

What do you make of that, apart from the B12 being quite a long time ago? From having a quick look, I can't for the life of me see how they think that the Vit D is normal, but perhaps that's actually from before I was put on the prescription stuff?

They're going to try to organise a home visit tomorrow to look into the itching. They did offer yet another antihistamine, but I feel that I've been on so many antihistamines by now that if they were going to clear it up, they would have. Should I ask for any blood tests, either with respect to the B12 or the itching? Or would being on B12 supplements now cause problems with the blood tests? I'm only on 250mcg at the moment, since I've just started and I'm raising it slowly.

mrsD 04-22-2013 09:54 AM

The D is low. US range is 30-100ng/ml.
your lab does nmol/L so conversion is to divide by 2.5...
from this conversion chart:
http://www.unc.edu/~rowlett/units/sc...ical_data.html

The new recommended normal is 50ng/ml so you should need at least 2,000 IU D3 daily.

Your B12 is just barely over the 400pg/ml level. If yours had been reported at pmol/L we'd have to do the math conversion on that, but yours is just a variant on pg/ml.

The blood tests for angioedema are in the links I gave you.
They are for the c-inhibitor levels, and various complement values. (blood work).

Dizziness, low blood pressure on stand up suddenly is an orthostatic problem. It can be from a autonomic neuropathy called dysautonomia...sometimes called POTS.
http://en.wikipedia.org/wiki/Dysautonomia


Sally on PN had/has this also. Autonomic neuropathy can affect the stomach...cause delayed emptying and digestion. This leads to nausea and pressure pain as the food cannot move along properly. The medical term for this is gastroparesis.

http://en.wikipedia.org/wiki/Gastroparesis

Batik 04-22-2013 10:41 AM

I've been trying to get assessed for POTS since August! (And yes, Sally is one of the people who made me aware of it in the first place. I dropped her a PM via PR, since I can't use the messaging system here yet.) It is going slowly, there have been snafus along the way, but the appointment with the cardiologist is now less than a month away, and hopefully he will be able to refer me to a really good ME and POTS specialist in another part of the country whom I want to see.

I just had a chat with the people who make my D3 supplement and they reckon that the amount of D3 I'm planning to take sounds like a good amount. The plan is three of the Opti3 capsules a day, which will be 300iu per day, plus two of the 5000iu D3 capsules a week. That averages out to 1729iu per day. If I made it three D3 capsules a week, it would be 2443iu per day. Would that be better?

So is my D3 17ng/ml, then? The range my doctor is using definitely seems to be on the low side, from having had a look around.

What's your preferred reference range for B12?

Incidentally, I've been hearing that you need to take more potassium when you increase your B12 levels, but then I looked up B12 on Wikipedia (which backed up your assertion that sublingual is pointless, there was a handy 2003 study) and it said that potassium can actually interfere with B12 absorption. Any thoughts? I'm taking about 1/2tsp potassium chloride a day in my electrolyte drinks (well, I call them that, it's just low-sodium salt in water).

With regard to increasing the B12, any idea how I work out how fast to increase it? Are there symptoms which would be a sign to slow down, for instance? I tried it in the morning for a few days, felt really tired all day, switched to evening, couldn't get to sleep, so I have no idea when to take it now. I gather that chewing the tablets is a good idea, plus the empty stomach thing. Although on that subject, does it matter if I've recently had a small snack, such as an oatcake or two? Once I'm on a higher dose, is it better to take it all at once, or in divided doses throughout the day?

Angioedema - I'm not getting any swelling, which seems to be an important part of that. My skin looks perfectly normal, it's just itching a great deal. I've only ever had a rash once, which is when I generally got a slew of symptoms one day after lunch, which in hindsight I suspect was mild anaphylaxis. And that was six months ago anyway. Itching, on the other hand, is an everyday occurrence, along with dizziness, feeling freezing cold and so forth.

There has been one change in terms of detergents. I added a fabric softener which supposedly didn't have any artificial fragrances about three weeks ago. I used it twice, realised something was up, rang the company, discovered that they do in fact put in artificial fragrances while indicating the opposite on the label (Trading Standards are now investigating), and promptly rewashed everything. I doubt that would still be affecting me now, and I was moderately itchy before that happened anyway. Apart from that, I'm using exactly the same products I've been using for many years. I have literally been on the same shampoo and conditioner for 19 years now! I have incredibly fussy skin, so I'm always really careful about this sort of thing, make my own moisturiser and so forth.

Pabb - Sorry, I forgot to say that I went back on the gluten in order to get tested for coeliac. I think it was 6 weeks beforehand? So by the time I had the tests, I'd realised that I felt exactly the same as I did off gluten. As for gall bladder issues, they seem to be common in pretty much everyone! Which makes it hard to work out what is actually causing them.

Thanks again for all the help. I really appreciate it.

Batik 04-22-2013 10:53 AM

Hang on, I've just read a couple of things which say that you should fast before having blood tests for B12 and folate. Is this true? Because the doctors have never bothered about that when taking blood from me.

mrsD 04-22-2013 11:00 AM

The potassium thing usually happens when people are severely anemic. Potassium is robbed by developing red cells..they contain alot of it. But if you are not anemic then you would not be making the red cells so fast, and hence your potassium levels would not stressed that way.

In US 400 is the new low. But in Japan it is higher than that even...at 500-550. So consider your level, marginal.

Fabric softeners are problematic. I'd avoid them completely.
I never use them here. In fact we double rinse all our clothes.
You'd be amazed how much soap is left in after one rinse!
We use Tide Sensitive in fact.

If fragrances bother you, you might want to take some B1, or it improved version Benfotiamine daily. I've read that people with chemical sensitivities who react to aldehydes which are in fragrances, have a metabolic problem metabolizing aldehydes.
This would go for beer and wine and aged whiskeys too.
B1 is the cofactor in aldehyde metabolism.

Batik 04-22-2013 11:12 AM

Yes, my brief experiment with fabric softeners was very short-lived. The washing machine repair guy had recommended them, that was the only reason I tried them to begin with. Tide Sensitive would probably still be my idea of an irritant, though it's hard to tell as we have different brands in the UK. Let's just say that you can't buy anything I use in a supermarket, it's all speciality health food shop stuff. It was a right nuisance when the washing machine wasn't working a few years ago, as I had to keep sending the clothes out to a laundrette. The first time I forgot to include laundry liquid, so they used what they claimed was a really gentle one and I had the itchies for three days (back when three days of itchy skin was news). The next time I sent in my own laundry liquid, concentrated stuff where you use a capful at a time, and they used half the bottle.

Interesting about the aldehydes. People with ME are renowned for being unable to tolerate alcohol. I never drank to begin with, so I have no idea whether that's true for me.

I'll be taking the Biocare B-Plex B complex once it turns up. (I still can't link to it, not enough posts yet, but it's easy to Google.) Biocare have a good reputation, and it was pretty much the only one I could find in the UK without folic acid. It's basically a B50, plus 200mcg biotin and a smidgen of Vitamin C and magnesium. Previously I've been taking the Country Life Coenzyme B Complex, not that I could really see much difference with that, but it has folic acid and everyone says to avoid that when messing around with this B12 business, so I'm switching.

Incidentally, a friend of mine is having a rough time with anaemia and a lot of stress at the moment. She's not eating well right now either. I recommended Floradix to her for the iron, and she's loving that. Since I have about a month's worth of the Country Life B complex left over, should I just pass that on to her?

mrsD 04-22-2013 01:01 PM

Yes, Sally reminds me:

Vegans can get low in methionine and carnitine and some of the sulfur aminos...like cysteine.

Also they can get low in zinc.

Usually I tell people to stop B12 supplements for 7 days before testing.

Batik 04-22-2013 01:17 PM

It's looking very likely that I have POTS. My HR doesn't go up the full 30bpm every time I stand up, but then I can't stand dead still anyway. I've not had a TTT yet. I'm too tired to go into it now, but suffice it to say that I've been looking into this for a while, and I have good reason to suspect POTS, mast cell problems and/or EDS.

I stopped eating meat eight years before I got ME, i.e. twenty-four years ago, and never experienced any problems due to it. Going vegan actually improved my health, as I don't get on with dairy. I'll bear the carnitine etc. in mind, although I've taken acetyl L-carnitine in the past without any noticeable effects. There's zinc in my multi-mineral supplement. Which I ran out of a few weeks ago, now you mention it, so that might be one reason why I'm feeling cruddy at the moment.

Batik 04-27-2013 08:39 AM

I'm finding that I can increase the dose every few days, so I am now up to 2mg B12. I'm on 200mcg Metafolin: does anyone know if I'm likely to have to increase that? Because it's a nuisance cutting the 800mcg tablets into four, and I'm eyeing up the 400mcg tablets.

One curious effect I'm noticing is that I seem to be retaining water. I never retain water. I deliberately lost a quarter of my body weight the other year, and I was the only one on the dieting forum not grumbling about how the scale bobbed up whenever they ate something particularly salty or were premenstrual. (Which was particularly odd since I get premenstrual breast swelling, yet my weight continued to saunter downwards. I concluded that they were inflating with air.) Now, however, I am retaining water in quite a noticeable way. I know that people with POTS start to retain more water when they are put on Florinef, so I'm wondering if I'm getting a similar effect from the B12. Does anyone know more about how this works?

It's hard to tell how I'm doing on the B12, since we're having something of a crisis in my block of flats and it's been quite exhausting. You know you're having a bad day when you reflect, "Well, the good news is that the smell in the basement wasn't a dead body after all." Either I'm still running on adrenaline and due for an almighty crash, or I'm coping with the stress and exertion remarkably well.

mrsD 04-27-2013 09:03 AM

You can take the 400mcg Metafolin every other day or so and avoid the cutting of the tablets that way.

Stay at the 2mg B12 or 1mg a day. Your level was not terribly low, just marginal.

Are you on gabapentin or Lyrica? They cause water retention.
Too many carbs and sugar also retain water.
Some tissue swelling may occur RARELY with high B12 levels, but yours are not really high.
Salt is only one culprit.

Low thyroid functions also lead to fluid retention.
And kidney and heart problems will also.

Batik 04-27-2013 09:28 AM

They check my thyroid fairly often and it's always fine. I don't eat much sugar, I'm on a nice healthy diet with wholegrains and so forth. Admittedly there's been a bit of a home-made chocolate spread situation since last night, but after the week I've had with this stairwell problem, I think I'm allowed. And lord knows that I've burned it off through all those stairs I had to climb while staying at a friend's. I'm surprised that I can still move, frankly. Normally that level of exertion would have had me flat out for weeks afterwards.

I'm meant to be taking salt, I need it for the POTS. Otherwise my blood pressure drops through the floor and I feel dreadful.

I thought you said earlier that I should take 5mg B12 since I'm vegan?

At the moment I've got the 800mcg tablets for the Metafolin, but cutting them into half and taking them every other day would be easier than what I'm doing now. If I keep on taking a 200mcg dose, I've got a year's supply of the stuff.

I've just worked out that my home-made electrolyte drink supplies about 1.8g sodium and 1.2g potassium a day, at least if I drink 2.5l of it. That's what I generally aim for, but I've been really thirsty and had more like 4l a couple of times since starting the B12.

I'm not on antiepileptics, nope. I had a dreadful time coming off gabapentin a year ago, and have been avoiding them ever since.

Judging from what I've heard about POTS and Florinef, water retention is actually a good thing. People with POTS tend to have low blood volume, so all that necking down of electrolyte drinks is with the aim of bringing the blood volume back up. And when I actually get to that specialist I've been trying to get referred to since August, I will hopefully get my blood volume tested. Until then, it's speculation.

I put on 3lb in the space of two weeks, while on a diet that should have had me losing 1/2lb a week (and I know I can diet successfully, I've done it before with no problems). Plus I stayed with a friend for a day, didn't get much salt or as much water as usual, and the next day my trousers were suddenly very loose on me. Hence noticing that I'm retaining water differently to what's usual for me.

mrsD 04-27-2013 09:41 AM

Your levels were not in that low 150-300 range... so 5mg may not be needed. I only recommend 5mg for about 3 months or so until the next testing...to see if levels are coming up properly.

There are a few people on PN who continue with it at 5mg. But I don't. Once I had my testing on the Puritan's version, I dropped to twice a week, 5mg.

It takes a while for the liver to store up new reserves, and the
spinal fluid takes some when low. Once those two depots are filled, taking more is not really necessary for long periods IMO.
(unless you have some rare trancobalamin issue, suggesting poor transport etc, but testing for this is still very new and not well understood- or some other rare issue that at this time is not explainable.)

The 5mg is to jump start repair, and replenish long used up stores. But once that is accomplished, 1mg a day would be close to the RDA for a vegan. Testing is really necessary to see where you are in the future to decide completely.

Batik 04-27-2013 10:16 AM

So does that mean a good plan would be to get it up to 5mg, take that for a couple of months (a bottle of 60 tablets), and then see how I feel dropping it back down to 1mg or 2mg? As far as I can tell, other schools of thought with regard to B12 for ME/CFS range from 1-2mg per day to much larger doses using multiple sources of B12.

Do you have any opinions on methylcobalamin vs. dibencozide, by the way?


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