B12/Folic Acid and D3/K2 Supplementation

I am very conflicted on this. I've actually had a serum active B12 test which came back in the normal range, so this is perhaps further evidence that I am not deficient. However, I look at the list of symptoms - some of them very specific - and think it is worth a try.

My Dad's partner is a nurse so I could get her to help out. I have found a site that delivers to the UK. It seems to be harder to source than in the past.
 
Trish said:
When you say 'recommended', do you mean experimented with, recommended by a doctor, or based on a clinical trial?
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Recommended as a possible helpful treatment by Dr Vallings in NZ. Her idea of it as something a pwME might want to try is based on the discovery of low B12 in the cerebrospinal fluid. And on anecdotal evidence of some but by no means the majority patients having some benefit from injections specifically. And she observed that, whether it was helpful or not, it didn’t later trigger a crash. I believe her reasoning is that injections are thought to better find it’s way into cerebrospinal fluid compared to oral supplementing but I apologise I don’t have her reasoning on hand for this, whether it is based on findings or a general belief it is a more effective means of delivery. And as only a small number of patients experience a significant improvement I don’t expect to see it as a research priority.
 
Hutan said:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124648

Abstract
Background
Patients with myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) may respond most favorably to frequent vitamin B12 injections, in vital combination with oral folic acid. However, there is no established algorithm for individualized optimal dosages, and rate of improvement may differ considerably between responders.

Objective
To evaluate clinical data from patients with ME, with or without fibromyalgia, who had been on B12 injections at least once a week for six months and up to several years.

Methods
38 patients were included in a cross-sectional survey. Based on a validated observer’s rating scale, they were divided into Good (n = 15) and Mild (n = 23) responders, and the two groups were compared from various clinical aspects.

Results
Good responders had used significantly more frequent injections (p<0.03) and higher doses of B12 (p<0.03) for a longer time (p<0.0005), higher daily amounts of oral folic acid (p<0.003) in good relation with the individual MTHFR genotype, more often thyroid hormones (p<0.02), and no strong analgesics at all, while 70% of Mild responders (p<0.0005) used analgesics such as opioids, duloxetine or pregabalin on a daily basis. In addition to ME, the higher number of patients with fibromyalgia among Mild responders was bordering on significance (p<0.09). Good responders rated themselves as “very much” or “much” improved, while Mild responders rated “much” or “minimally” improved.

Conclusions
Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia. It’s important to be alert on co-existing thyroid dysfunction, and we suspect a risk of counteracting interference between B12/folic acid and certain opioid analgesics and other drugs that have to be demethylated as part of their metabolism. These issues should be considered when controlled trials for ME and fibromyalgia are to be designed.

Plos One, peer-reviewed, open access
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https://s4me.info/threads/response-...me-and-fibromyalgia-2015-regland-et-al.10019/
 
theJOYdecision said:
Her idea of it as something a pwME might want to try is based on the discovery of low B12 in the cerebrospinal fluid.
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I'd be keen to see any study about this. I'm aware of Dr Vallings' view on this, which has made it into the Auckland guidance to doctors on recommended treatments. But at present I'm inclined to leave it out of the guidance document for our region because of the lack of evidence.
 
Please note that there is a difference between the serum B12 test and the Active B12 test, and there is no guarantee that results for both will be similar. I paid to get Active B12 and serum B12 tested from the same blood sample out of curiosity - having done it once I won't do it again, but I thought it was an interesting and valuable experiment. My Active B12 level was much lower than my serum B12 when compared using percentage through the range for both.

For a discussion of active B12 and serum B12 and how they differ, see this link : https://www.biolab.co.uk/docs/vitaminB12.pdf

It's worth reading all the document above, but the differences between active and serum B12 are described in the paragraph on page 2 entitled "Vitamin B12 status assessment".
 
theJOYdecision said:
I believe her reasoning is that injections are thought to better find it’s way into cerebrospinal fluid compared to oral supplementing but I apologise I don’t have her reasoning on hand for this, whether it is based on findings or a general belief it is a more effective means of delivery.
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I don't think it is possible for there to be a difference in access to CSF across the blood brain barrier for any B12 that has got into the bloodstream. This sounds seriously misleading and inaccurate. The reason for giving B12 by injection is if the cause of deficiency is failure to absorb in the small intestine specifically because of a lack of intrinsic factor from the stomach. Oral B12 is fine as long as there is intrinsic factor but the common cause of B12 deficiency in the west is lack of intrinsic factor due to pernicious anaemia.

B12 injections were also used in the past as placebos because injections seem to have more placebo effect.

There does not seem to be any logic to using B12 if the serum level is normal.
 
InitialConditions said:
Hi folks,

Was wondering if anyone has self treated with B12 injections? I am looking to trial this. I tick many of the boxes for issues with B12 (fatigue, glossitis, vision issues) though my serum B12 is in the normal range.

I am minded to try and source hydroxocobalamin and self inject. Anyone done similar? And if so, is there a reputable source?
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I'm not self-treating but I do get a dose of hydroxocobalamin twice a week IM and it does help with pain and fatigue a bit. It's in no way a miracle-solution though.
 
Ugh! Latest blood tests show very low B12 again. Everything else is very good for the first time; cholestrole is down to normal, other bloods OK everything is in normal limits. Except B12 and first time T4 is very slightly higher.

Had my first 5 injections every day then this is my second weekly injection that first time it really hurt. I mean really burning, then I had diarrea. My already bad gastritis flare went worse.

What's going on? Really fed up. Can not eat again, if I eat I feel soo full and bloated. And not eating is good at first but then acid starts churning. Couldn't sleep as I had to spent the night at the loo. Terrible.
 
Sending hugs :hug: @erin. Sorry you're having all these problems. I had the full set of B12 shots summer before last. Was lucky, didn't have any side effects other than being knackered as it was a long drive to walk-in-clinic and then back again every 2 days for 2 weeks! At least it was a beautiful drive as we were on holiday in Wales.

Thanks for the reminder - I haven't had any more injections for ages (I think they're trying to cut down on them in NHS) and I should prob ask for B12 testing again.

Thinking about your feeling bloated and then having to sit on loo all night - sounds horrible. I think this is the sort of thing that definitely needs checking by a doctor. When I had something that sounds a bit similar it turned out I had diverticulitis, treated with antibiotics. Still have diverticular disease, but have med to help with that, and know now to go to doc if think I'm getting diverticulitis again. Please note my only med advice here is to see a doctor.

Sending you some more hugs. :hug:
 
Thank you so much for the hugs and the advice @ladycatlover, I have intestinal problems though not sure about diverticulitis, a painful condition a friend of mine has it. I didn't know you have it too.
I also have gastritis and it is flared -not going away. I know I need to see a specialist again probably; colonoscopy and endoscopy time again. I've been pretending that I'm a normal person recently, not going to dr's and maybe eating things that I shouldn't. I'm better today though done nothing in my pj's.
 
erin said:
Ugh! Latest blood tests show very low B12 again. Everything else is very good for the first time; cholestrole is down to normal, other bloods OK everything is in normal limits. Except B12 and first time T4 is very slightly higher.

Had my first 5 injections every day then this is my second weekly injection that first time it really hurt. I mean really burning, then I had diarrea. My already bad gastritis flare went worse.

What's going on? Really fed up. Can not eat again, if I eat I feel soo full and bloated. And not eating is good at first but then acid starts churning. Couldn't sleep as I had to spent the night at the loo. Terrible.
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Sorry the B12 shots are causing you to feel sick. I have issues with my B12 getting low too and find supplementation via pill works just as well as injections without the hurt or distressing symptoms.
 
Squeezy said:
@Arnie Pye Adenosylcobalamin is entirety new to me. How much do you take of that, and the methylcobalamin?

Thanks.
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Squeezy, I've just noticed you asked me a question two years ago and I never answered. So, I'm just a little bit late... My apologies. :D

Adenosylcobalamin has several names - see the wiki article : https://en.wikipedia.org/wiki/Adenosylcobalamin

This is the adenosyl-B12 I took :

Code: 
https://www.amazon.co.uk/Country-Life-Gluten-Dibencozide-Lozenges/dp/B000P9RLWG/ref=sr_1_3

Amazon product ASIN B000P9RLWG
I was never happy with my choice because it contains folic acid, and I'd prefer to avoid that because I'd read this article :

https://chriskresser.com/folate-vs-folic-acid/

However, I couldn't find another product with adenosyl-B12 in it which had a generous dose.

Eventually I gave up taking it altogether because it was rather too expensive for me.

At the same time that I was taking the adenosyl-B12 I was also taking methyl-B12 5000mcg.

I would alternate the adenosyl-B12 and the methyl-B12, I wouldn't take both on the same day.

I had/have no particular preference for brand of B12 of any kind, as long as they get semi-decent reviews on Amazon or other sites. Price is a big dictator of which brands of supplement I buy, rather than quality, although I try to avoid supplements with lots of excipients and fillers.
 
@Arnie Pye :woot:

And :hug:

I totally forgot about it. Of course. Brain drain. Thanks for picking it up again. Very diligent of you :thumbsup:

I'll look it over again and see if it warrants the expense... I find these days that few things do. I use the lemon flavoured Jarrow sublingual methyl B12s. Crunch them up a bit to speed them on, then let the littler bits dissolve under my tongue.

My blood tests say they're working, and I don't fall over when I close my eyes anymore, (feet together, close eyes, you shouldn't topple), which the neurologist said was the big giveaway symptom.

But a boost in energy, that people have talked about in another forum, has never happened to me in several years of B12 supplementation. Started with injections about 5 years ago, moved to tablets. Stopped tablets on doctors orders, levels drooped, restarted, levels up. Energy always rubbish.

But then, there was a whole thread on another forum devoted to a daily injection regime that I shied away from.

These days I'm too busy with life stuff to delve into the science of whether that makes any sense or not. Maybe I'm missing out, and that was my salvation. PWME. Missing out on life, but fearing missing out on a miracle.
 
Squeezy said:
PWME. Missing out on life, but fearing missing out on a miracle.
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I like this observation. So very true.

I have confirmed B12 malabsorption, and inject myself. Since the deficiency symptoms were sorted out, I've never noticed an energy boost from my injections – I often feel unusually wiped out the day after.

Whilst I was deficient, my energy levels were constantly flat. The pattern was noticeably different to the hour-by-hour variation in mild/moderate ME, which is what made me spend more than two years trying to fathom out what was wrong.
(In hindsight it should have been pretty obvious, and fact it was to the only person who actually listened – the rheumatology nurse who was reviewing my DMARD drug.:rolleyes:)

I do wonder if people who feel better after a course of injections were just low in B12 to start with.
 
Squeezy said:
My blood tests say they're working, and I don't fall over when I close my eyes anymore, (feet together, close eyes, you shouldn't topple), which the neurologist said was the big giveaway symptom.

But a boost in energy, that people have talked about in another forum, has never happened to me in several years of B12 supplementation.
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My active B12 and serum B12 are both well over the range, and I feel a bit better when I keep it like that. I have the same issue with falling over when my eyes are closed. And worst of all is trying to walk around in the dark or the semi-dark. Going for a pee in the middle of the night is horrible - I stagger all the way there and back because I prefer to keep the lights off. If I walk along poorly lit streets at night, or when I'm walking between street lights, I stagger all over the place then too. I did get a major (but temporary) reduction in my staggering when I had an operation in March, but sadly the benefits I got from it have dribbled away over the months since it was done. But it was amazing while it lasted - it improved my confidence immensely when I didn't stagger around everywhere and my walking speeded up a lot.

As for the alleged boost of energy from B12 - I'm convinced its an urban myth. It's never happened to me.
 
Arnie Pye said:
I have the same issue with falling over when my eyes are closed. And worst of all is trying to walk around in the dark or the semi-dark. Going for a pee in the middle of the night is horrible - I stagger all the way there and back because I prefer to keep the lights off.
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Me too! Mine started long before ME, and I think there are several possible causes. It might even be connected to my autism, I'm not sure.
 
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