Giving You Back YOUR Life

B12d Charity Support Group Blog

  • 02
    APR

    Fibromyalgia and Vitamin B12

    Fibromyalgia - all over body pain and a painful sensitivity to pressure (touch) - is an awful condition.  Even worse, it's often accompanied by other conditions such as extreme fatigue, trouble sleeping, 'fibro-fog' (memory and concentration problems), Lupus, ME and CFS, Migrines, yeast infections, more frequent in women than men.  Readers of this blog will instanty recognise many of these symptoms as they sound a lot like Vitamin B12 deficiency symptoms. Well,...

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  • 12
    MAR

    How much B12 do I need?

    So I have symptoms of B12 deficiency, and to me they are devastating.  How much, and what sort of, B12 do I need to take? Why some people have B12 deficiency and some don't B12 is used in the body in huge quantities.  It doesn't change, it's a Co-Enzyme or Catalyst or Transporter, so on the whole you don't use any up.  But it seems to get deactivated and needs to be re-activated.  We believe this process happens through entero-hepatic circulation, whi...

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  • 05
    MAR

    What's in our B12?

    B12d ships two types of injectable B12 - hydroxocobalamin, and methylcobalamin. Hydroxocobalamin is in a salt as hydroxocobalamin acetate.  It's the form that most people find the most useful, because it converts easily into both methylcobalamin and adenosylcobalamin, which two forms you need for all of the body's functions.   Methylcobalamin is in a salt with natrium chloride.  It's a different form, and whereas quite a lot of people can convert this to a...

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  • 05
    MAR

    Can B12 cure cancer?

    Cancer - the dreaded C word! And the question whether Vitamin B12 has anything to do with it? Let's look at what we know: Vitamin B12 is needed by cell DNA to switch off genes that aren't needed right now most cells only need 1 or 2 genes switched on to perform their function. eg thyroid cells need the gene to produce thyroxin switched on, and nothing else. so they need lots of B12 to keep everything else switched off. poisons like cigarette smoke and alcohol take B1...

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  • 02
    FEB

    Talk to Dr Chandy

    Dr Chandy has 50 year's experience as a doctor, and 36 diagnosing, treating and understanding B12 deficiency.  Due to some unfortunate circumstances (explained in the forthcoming book), he's also worked with patients who have had B12 supplements withdrawn or restricted. If you want to understand your symptoms and where they are going, and what is the likelihood that you have B12 deficiency, then please fill in the Symptoms Diary and email the good Doctor on notifica...

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  • 15
    JAN

    My Health Checks and Symptoms Diary

    We've asked everyone to keep your symptoms diary up to date.  Here's how you do it. The "My Health checks" area has your previous records.  You add to them by using the  "Run B12 Calculator" which creates a new health check. Once you have completed one, you'll see it in the "My Health Checks" area.  When you do this every week (or every day, or however often) you can see a history of your symptoms and scores with dates attached, which you can then com...

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  • 03
    JAN

    New Process for Requesting B12

    New Process for putting in requests for B12 As you know, we get more requests for B12 (hydroxocobalamin and methylcobalamin) than we can afford to buy and send.  The only funds we get to run the charity and buy B12 are from your donations, although we do apply for grants to upgrade the website and print stuff. We’ve noticed that some of the requests come from complete strangers – no note, just one (or sometimes lots) of requests for every type of B12 for...

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  • 20
    NOV

    Where do I put my requests and my enquiries?

    As everyone knows, the charity is run entirely by volunteers, and all of our donations go towards buying B12 to fulfil the requests coming in.  Which means we have to run a pretty slick operation, because volunteers have busy lives and have to fit in working for the charity around paid work. So, if you give me your symptoms in the NOTES area of a request, it helps me to prioritise (we never have enough to meet all of the requests so we have to prioritise) but Dr Cha...

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  • 13
    SEP

    Why is my request taking so long to arrive?

    We're getting lots of messages asking when your request will be shipped.  I want to reassure you that we haven't forgotten anyone - although duplicate requests do cause a problem. Stocks of B12 B12d (the charity) doesn't have any stocks.  We have to buy in bulk to get better prices otherwise we couldn't possibly keep up with all of the requests, and we spend everything in the bank account the moment we have enough to buy another batch.  We buy 100 boxes of...

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  • 28
    AUG

    New instructions for injecting from ampoules

    Methylcobalamin injections from ampoules 5mg/ml Hydroxcobalamin injections from ampoules 1mg/ml I have now re-written the instructions.  Please download the instructions and let me know if they are easy to follow or confusing. Hugo

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  • 17
    JUL

    Methylcobalamin STINGS on injection

    The last batch of methylcobalamin caused stinging when injected.  We suspected that this was due to being manufactured in sterile water instead of sterile saline, and Lynn Holloway has come up with an excellent suggestion, to add sterile saline (0.5ml/ml) to the injection which buffers it and makes it not sting any more. No we don't have any in stock - the moment we received 200 bottles we sent them straight out to requests. Thanks

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  • 26
    JUN

    How BREXIT affects B12

    You are probably sick of hearing about Brexit, but it does affect us directly. Exchange rates have tanked.  All of the B12 we get has to be imported, and we don't hold any stocks, so the cost to us has immediately risen by 10%. However it gets worse.  A great many people have noticed that you can't get methylcobalamin for injection in UK, and we can no longer import methylcobalamin from Europe into UK.  The pharmaceutical industry has a stronger hold over ...

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  • 27
    APR

    USA supplies back on stream

    Our favourite readers will be delighted to hear that we have had a batch of 96 bottles from USA.  This is the preferred form for may of you - a bottle of 10ml or 30ml with a rubber bung in the top.  They are also more cost-effective than the Arnika stocks (please note, a 30ml bottle of 1mg/ml from USA is more expensive than 10*1ml ampoules - per dose the USA stocks are much cheaper). the new supplier, also from Texas USA (the previous one still hasn't got ...

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  • 17
    APR

    How to take B12

    So you've checked out the Symptoms Checker http://www.b12d.org/admin/healthcheck/diagnosticcalculator and worked out that you are B12 deficient.  What do you do then? First, try out oral supplements (sublingual lozenges or tablets).  It's most likely that you aren't getting B12 in your food, since our modern farming and food processing methods mean that there's far less than there ever was.  Unfortunately we've managed to raise awareness so ...

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  • 10
    APR

    Availability and Stocks of Methylcobalamin

    Everything is about stocks.  THat doesn't make very interesting reading so sorry.  Unfortunately it looks as though we've been a little too successful raising awareness because the price of methylcobalamin has shot up. Methylcobalamin for injections The favourite form for injection, we used to get 30ml bottles of methylcobalamin which allowed people to fill 30 syringes (1mg/ml) or 150 syringes (from the 5mg/ml) and gave you regular treatment over a fairly ...

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  • 03
    APR

    Methylcobalamin for injection - help us to help you

    Probably the biggest thing that B12d does is send methylcobalamin to people for injection.  So it's worth talking about this. 1) We can only ship within the European Union.  Anywhere else, including Switzerland, customs will simply impound and destroy the B12 and it won't reach you.  We reject all requests from outside European Union 2) we can only send methylcobalamin for injection if you already have B12 injections (cyanocobalamin, hydroxocobalamin, meth...

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  • 28
    FEB

    Dr Chandy's latest findings - Multiple Sclerosis (MS) - is there a cure?

    Work never stops, even though Dr Chandy is now 74.  He'll be presenting his latest evidence that there is a form of Multiple Sclerosis, which we term MS-like presentation, which responds well to B12.  The symptoms remit whilst the person is receiving treatment, consistently.  On the few occasions where we have not been able to keep up treatment or the patient themselves has stopped taking treatment, symptoms relapse which is a shame, but it shows that the ...

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  • 10
    JAN

    We only accept requests via this website

    Thank-you very much for making donations via PayPal and directly into our bank.  As you know, the charity is entirely dependent on donations to do what it does, and your donations are mostly used to pay for methylcobalamin to send out to people that need it.   The badges, diaries, equipment, banners etc were all prepared using the grants from The Big Lottery and County Durham Community Foundation, who specified that their grants could only be used for these pur...

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  • 26
    DEC

    Methylcobalamin for injection

    Methylcobalamin injections from ampoules 1mg/ml Hydroxcobalamin injections from ampoules 1mg/ml B12 - methylcobalamin for injection, just arrived from Arnika labs in Germany.  This is in Ampoules so i have re-written the instructions.  Please download the instructions and let me know if they are easy to follow or confusing. Will start getting them packaged up and shipped in the next few days.  Note at the moment these are about 3* more expensive than the U...

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  • 19
    DEC

    Best Wishes for Christ's Mass

    Here's our Christmas Card design.  Today we sent printed cards to the most generous of our donors this year, so you should get them early next week.  With all best wishes! 

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  • 19
    DEC

    Methyl-B12, folic acid, B6 tablets dispatched, methylcobalamin supplier

    Dear everyone waiting for supplies We got 17 bottles of these combined tablets in yesterday, and sent them out to people waiting this morning.  I hope they come as a Christmas Present in time for Christmas! That leaves another 17 people waiting.  We ordered 50, and our supplier has told us that there seems to be a europe-wide (or even world-wide) shortage due to unprecedented demand.  We hope to get more soon but I have noticed that other suppliers are als...

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  • 24
    NOV

    Support Group in Gloucestershire

    Sue Childs writes I will be setting up a support group for the PAS in Gloucestershire. First meeting is 27th February 2016 at Dursley Library Dursley Glos. 10.30 to 12.30 Details will be on PAS website in near future. If your members wish to attend they are welcome and can contact me via Gloucestershire.pas@gmail.com Regards Sue Childs

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  • 12
    NOV

    My GP Says it's all in my head

    [taken from a letter written to a patient]Will you be upset if I agree "it's all in your head" and then explain why?  B12 is vital for the development and maintenance of the myelin sheath around nerve axons, and there's a lot of myelin sheath around the billions of axon connections in your brain.  So in the absence of trauma, the most likely cause of anxiety and depression is probably nutritional, in other words, a lack of B12.  Want to put it right -...

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  • 12
    NOV

    B12 Methylcobalamin Stocks - we have none!

    Dear friends I'm sorry to say that we have no stocks at present. We buy methylcobalamin for injection from USA, because we know that the quality is good and the deliveries are reliable.  Most compounders require a prescription for each patient but we've found one that will ship to a registered physician without a prescription for each patient.  Unfortunately they have had quality issues, which means that they can't ship until January (the quality of the materri...

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  • 25
    OCT

    The FAQ pages

    Please do check the FAQ pages for updates - I've just added an update explaining how to get methylcobalamin for injection as this is the most common question at the moment. Thanks

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  • 16
    OCT

    User Settings - Mail Preferences

    Dear everyone Do you want to know whats happening with your charity?  Do you want to know when we hold coffee mornings, to get the newsletter, to get alerts? Well I've just been on our website and created a sample user, and I found that it says you don't want to receive any of this information by default. So when you create an account, or when you go into your account to make any changes, if you would like the news then make sure you tick the EMAIL LIST box to a tic...

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  • 08
    SEP

    FAQ - I'm thinking of starting my own coffee morning/ web site/ event

    QUESTION: Horden in County Durham is a long way away - I'm thinking of starting my own event. ANSWER: We'd be delighted to help you set up.  We haven't produced lots of printed material yet, although we do have some - copies of the protocol, a booklet of case studies, we have pens and supermarket trolley coins, and of course teddy bears, to help you spread the word. RELATED QUESTION: I'd like to start my own web site ANSWER: This is where it gets more controversial....

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  • 07
    SEP

    Newsletter Summer 2015

    Dear everyone Here's our Summer 2015 newsletter

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  • 07
    SEP

    Peterlee Carnival Sat 5 Sept 2015

    And the winner of the Peterlee Carnival teddy bear is a very small person Harley.  Here's his big sister accepting on his behalf, because he's sleepingoff the excitement. The B12d charity stand is proving to be a huge hit.  Supported by the Big Lottery and County Durham Community Foundation (and of course our many donors), the stand has been able to raise awareness of B12 deficiency through lapel pins, pens, trolly coins and the ever popular teddybear raffles.

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  • 21
    AUG

    Pirates in the Park Thurs 13 Aug 2015

    Pirates in the Park a fabulous family day out hosted by Horden Parish Council. Our B12 charity had a stall in a prime location amongst other community groups. The weather was fabulous which brought out local residents and the surrounding communities. Everyone who knows or are aware of B12 deficiency paid us a visit. We had a beautiful teddybear dressed in a tee-shirt our (new) B12d logo on the front and a skull and cross bones on the back, he had a pirate hat and an...

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  • 14
    JUN

    Frequently Asked Questions, FAQ

    Everyone asks different questions.  But a lot of people end up having the same basic queries. With the old web site, you sent me an email (to notifications@b12d.org) and i answered each email individually.  As you can imagine, this was both time consuming and slow for you. so we're trying to gather together all of the questions you ask, and put them into a section called FAQ, so you can find the answers you need straight away. It will take time to build a datab...

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  • 09
    MAR

    Forums and Facebook Groups

    Many people ask if they can join our forums.  We don\'t have separate forums just for us, we recommend that you join one of the Facebook groups.The best group to join is New Beginnings.  This is a private Facebook Group, so you need to search for it and then apply to join.  Unfortunately when we had public groups, people would join to shout about something and wouldn\'t shut up, so the forums have to be private so they have a way to remove an unruly member...

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  • 09
    MAR

    Come along and support our coffee mornings

    Do you feel alone in your suffering?  Well that makes lots of us.  Isn't it silly to feel lonely, when other people feel lonely too!That's why we run coffee mornings, once a month on the second Tuesday of the month 10:30 - 12:00.At the moment all of our coffee mornings are held in East Durham, alternating between Horden Welfare Club in Horden, Peterlee (North East England, UK) and East Durham Trust at Community House, Yohden Rd, Peterlee (North East England, UK...

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Are you B12 Deficient? Use our diagnstic calculator to find your diagnosis and how we can help you
Charity Events - View our calendar of events and see what is coming up for B12d
Success Stories - Read success stories on patients of Dr Chandy and other B12 Patients
Julia found her eyesight going as her eyes refused to focus on the same things as each other. She's been for all sorts of tests and treatment, but now that she's on B12 replacement therapy she's starting to see an improvement.
June describes her suffering when doctors didn't follow the standard protocol after any stomach or intestinal operation - to offer B12 replacement therapy
Frankie tells of how she suffered, the tests she had to endure until doctors worked out what was wrong, and what a difference it has made.
The Scottish Parliament discusses Pernicious Anaemia and vitamin B12 deficiency on Wednesday 7 March 2012.
This video is over 1 hour long and represents real political change - we are at last on our way.
Dr Chandy was nominated for the North East Local Heroes award. The interviewer was at first surprised - people don't get awards for doing what they are paid to do - but she persisted.
Janette first appeared in the BBC InsideOut documentary in October 2006. Since then the NHS has forced her doctor to withdraw B12 replacement therapy on a number of occasions, and she tells of her struggles with having B12 and then having it taken away.
She has bravely agreed to be filmed without her usual wig, but her memory is playing up because it is so long since her last injection.
Susan gets very tired, which isn't much fun especially as she has so much to do. Here she tells her story.
New documentary out from Elissa Leonard in North America, featuring Sally Pacholok and many other internationally renowned experts.
The definitive and original guide to B12 deficiency, Dr Chandy interviewed by Chris Jackson of UK BBC Inside Out Team broadcast 31 Oct 2008.
Dr Joseph Chandy explains symptoms and shows the restorative effect on one patient (other patients' families have asked that we edit out their stories unfortunately)
The local MP (Grahame Morris MP for Easington - who was a BMS (BioMedical Scientist) in the labs at Sunderland Royal Infirmary) interviews people with B12 deficiency to hear their story (August 27 2010). Here Jane describes the symptoms, and how she can't wait for her next B12 injection (in fact, she knows that she needs injections every 2 weeks because she's keeping a diary of the symptoms). We're restricted how often the GP can give injections, which is why we want to raise awareness.