For those of you who use methylcobala... - Pernicious Anaemi...

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For those of you who use methylcobalamin from B12D.org

Gambit62 profile image
Gambit62Administrator
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latest newsletter from B12D includes the news that they have found a UK source for methyl.

Although they will supply free of charge if you can't afford to pay please do make a donation to cover the cost if you can.

Note: you will need to contact them if you aren't already sourcing from them - as there are some restrictions on the circumstances in which they can supply.

Also a couple of support group meetings - check the b12d.org website which I presume will have details re meetings in Peterlee (13/9) and Dyram (7/9)

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fbirder profile image
fbirder

I presume you meant to write methylcobalamin in the title?

Is this supplied as single-dose ampoules, or as a bulk solution?

Foggyme profile image
FoggymeAdministrator in reply tofbirder

Hi Fbirder. Cut and paste from recent newsletter sent out by B12d.org:

'We’ve found a UK source, for methylcobalamin that has the correct certification for use in Europe and UK – 10 ampoules of 5mg/ml each (ie 50 doses in each box – REMEMBER it’s 5 syringes and 5 injections per ampoule)'.

So, looks like the suggestion is to use a single dose 5mg in 1ml ampoule, to provide 5 x 0.2ml doses of 1mg.

To be honest, not so sure I would want to use a single dose ampoule for multi-dose purposes - but that's just my personal view 😀.

fbirder profile image
fbirder in reply toFoggyme

You're not the only one who holds that view Foggyme .

PAS-admin profile image
PAS-adminPartner in reply tofbirder

It's not just a personal view - there's called single dose for a reason. B12 is also very sensitive to light so a single dose ampoul is just that, for a single dose. If you use half, throw away the rest.

1capricorn3 profile image
1capricorn3 in reply toPAS-admin

Hi, have been considering splitting 1mg/1ml ampoule into two doses i.e 0.5 drawn up into 2 syringe, use one, re~cap the other, keep in dark cool place (with the ampoules actually) & use within following 2/3 days.

I wanted to try 'little & often' as opposed to the full dose every 6/7 days because Ive began to feel really off for 24 hours after jabs recently. Been si + nhs for 3 years & this is new, so was looking at experimenting with dosage/times etc.

It never occurred to me there may be a problem with storing the other half of the dose until I read the post about Methyl (5 dose ampoules)..is this because it would be stored in an opened ampoule? What do others think about storing small amounts in the syringe for say 48 hours? I know it woudn't harm, just maybe be ineffective?

illnesswhatillness profile image
illnesswhatillness in reply to1capricorn3

As long as you keep it in the dark and far from any microwaves , the cobalt should be good . You could write to b12d and ask them about this .

fbirder profile image
fbirder in reply toillnesswhatillness

Yes, the cobalt is unlikely to transmutate into a different element. The problem is that it may no longer be part of a methylcobalamin molecule if it's exposed to ordinary light.

The good news is, if the methylcobalamin does go off then it will most likely go off to hydroxocobalamin. Some might consider that a good thing.

1capricorn3 profile image
1capricorn3 in reply tofbirder

Thank you, but I should have been more specific (brain fog)..it is hydroxo I will split into 2x0.5 mls. I didn't plan on putting it in the fridge, just in the cool/dark with the ampoules. I will use it 3 days after drawing it up (in a re~capped syringe straight from the ampoule)..do you think this will still be effective?

fbirder profile image
fbirder in reply to1capricorn3

Yes, that shouldn't go off. I'd still be worried about possible contamination, but that's possibly because I'm a little paranoid about such things.

PAS-admin profile image
PAS-adminPartner in reply tofbirder

It will become aquacobalamin, not hydroxy. From the manufacturers: Aloud our testings and information it is correct that methyl- and adenosylcobalamine transform to aquacobalamine. We did studies about the disaggregation and the transformation. We arrived at the conclusion that it takes about 10 to 15 minutes light exposure to transform methyl- or andeosylcobalamin into aquacobalamin.

fbirder profile image
fbirder in reply toPAS-admin

Well, you live and learn! Thanks.

I know very little about aquacobalamin. How does it behave in the body? Is it effective, getting converted to active forms?

PAS-admin profile image
PAS-adminPartner in reply tofbirder

Nobody knows much about aquacobalamin (or other forms, there are more)

Some years ago I found:

'aquacobalamin - when free (not protein bound), probably rapidly and irreversibly converted to glutathionylcobalamin; may be useful for treatment of Alzheimer's disease (Xia 2004[65])

'

'glutathionylcobalamin (gamma-glutamylcysteinylglycinylcobalamin; gamma-GluCysGly-Cbl) - formed from glutathione and aquacobalamin, intermediate in biosynthesis of adenosylcobalamin and methylcobalamin (Suto 2001[64])'

64.↑ Suto RK, Brasch NE, Anderson OP, Finke RG. Synthesis, characterization, solution stability, and X-ray crystal structure of the thiolatocobalamin gamma-glutamylcysteinylcobalamin, a dipeptide analogue of glutathionylcobalamin: insights into the enhanced Co-S bond stability of the natural product glutathionylcobalamin. Inorg Chem. 2001 Jun 4;40(12):2686-92. PubMed

65.↑ Xia L, Cregan AG, Berben LA, Brasch NE. Studies on the formation of glutathionylcobalamin: any free intracellular aquacobalamin is likely to be rapidly and irreversibly converted to glutathionylcobalamin. Inorg Chem. 2004 Oct 18;43(21):6848-57. PubMed

fbirder profile image
fbirder in reply toPAS-admin

Yoiks!

That all sounds a little complicated for now.

PAS-admin profile image
PAS-adminPartner in reply tofbirder

Not just now ;) It is really complicated stuff, even for the professors working on it. Complicated lot we are, people ;)

Gambit62 profile image
Gambit62Administrator in reply toPAS-admin

Can just about get my head around this

ncbi.nlm.nih.gov/pubmed/235...

1capricorn3 profile image
1capricorn3 in reply tofbirder

I can't even pronounce the words let alone understand the meaning of them!!! But I did gather that it was all about the rapid degradation (disaggregation?) of Methylcobalamin..so, because I'm a tad mixed up now, does that mean the same also applies to Hydroxo (becomes aquacobalamin.. water? sounds like a 'water' word ) i.e will it be as effective 3 days after storing in the syringe, I'm sorry to keep asking, but I really couldn't follow all that & I simply don't want to waste 0.5mls every jab if I can store it & safely use it. Thanks.

Gambit62 profile image
Gambit62Administrator in reply to1capricorn3

the article is about metabolism once the cobalamin is inside you so a bit different from what happens when it is just sitting in a fridge because there are a lot more chemicals that it is interacting with once it is in your blood etc.

Storing it for 3 days in a syringe in a fringe should not, I believe, be a problem.

1capricorn3 profile image
1capricorn3 in reply toGambit62

Thank you. Shows how little I understood !

PAS-admin profile image
PAS-adminPartner in reply to1capricorn3

Put the syringes in a box or wrap in foil or something. Still not a fan of this, but could be fine. I know there are pharmacies that make prefilled syringes of methyl in Italy but don't know if they put then anything inside to keep it good. If I remember correctly it did have to be kept cold (and dark of course)

Foggyme profile image
FoggymeAdministrator in reply tofbirder

Should also add, fbirder that if I was still nursing, it would be my professional view also!

Gambit62 profile image
Gambit62Administrator in reply tofbirder

so true - will correct now!

Jose651 profile image
Jose651

That is great Gambit62,

Thank you for that information. The other important - and very necessary point to highlight- for members who use this wonderful facility, is to pay something, however small, to keep B12.org going.

God Bless Hugo and his volunteers who help so many ill people.

J 🍀

Ladystardust profile image
Ladystardust

They are sending me methylcobalamin. I donate weekly BTW. Hugo suggested I break one down into 10 doses in 10 syringes. Are you guys saying that is not safe? Would be in fridge wrapped in tin foil.

fbirder profile image
fbirder in reply toLadystardust

It's obviously not as safe as using single-use ampoules. Any bugs that happen to get drawn up into the syringe will have time to reproduce. Yes, keeping them cool will slow their growth. But we've all kept stuff in the fridge and found it mouldy after a while.

This is thrilling news . As methylcobalamin can be extracted from the microbes which live in soil , hopefully there will be more methylcobalamin produced in the UK to follow ! ( ruminants get their b12 from the tiny amounts of soil they consume when eating grasses . The cows in the CJD outbreak were being fed pellets with vitamin b12 lowering anti biotics in and were not grass fed . They had the symptoms of b12 deficiency - they had brain degeneration and were falling over ) . I`m a big fan of Dr Chandy and the b12d group , Sally from B12 Awareness and Martyn Hooper and all other groups for their work and the positive effect they have had on the health of many , including my own . After researching , I came to the conclusion that my child needed an active form of b12 and was relieved when Dr Chandy confirmed this in a telephone call I had with him a couple of years ago . I`m delighted by the news .

fbirder profile image
fbirder in reply toillnesswhatillness

Er, cows obtain B12 and related molecules because it is synthesised by ruminal bacteria.

Gambit62 profile image
Gambit62Administrator in reply tofbirder

Yes, as fbirder says ruminants like cows synthesis B12 in their guts. Humans and a lot of other animals with a diet dependent in part on meat can't synthesis B12 and so need to get it from their food.

BSE and CJD were caused by changes in agricultural practices around animal feed - there are similar problems with Scrapie in sheep. Rather than animals being fed on grass and vegetable proteins they were fed on animal protein which, in compound things, was not properly prepared - because risks weren't properly identified - resulting in transmissible spongiform encephalopathies (TSE) - nothing to do with B12.

Similar problems are also known to have occurred amongst cannibalistic human populations

This is quite a good article from the US on what happened with 'mad cow' disease.

emedicine.medscape.com/arti...

Ladystardust profile image
Ladystardust in reply toillnesswhatillness

I think they are getting it from intravita. Intravita quoted me £40 for ten ampoules plus £8 postage. I have never used it. I have been using hydroxo so far.

kyanah profile image
kyanah

hi how do I contact them please.

Gambit62 profile image
Gambit62Administrator in reply tokyanah

b12d.org/contact

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