Many voices make a difference!
Well done everyone who wrote to the BSH (British Society for Haematology) regarding their previous misinformed COVID 19 Guidance for those with B12 deficiency.
They have thankfully now updated their website with much more sensible advice so if your GP followed their previous statement – Please get them to take a look at this new link in order to get your B12 injections reinstated. They have now helpfully made the clear distinction between non dietary and dietary lack.
Highlights include:
“The need for intramuscular (IM) hydroxocobalamin should be discussed with each patient individually.
…….Alternatives to attending the GP surgery such as local pharmacies or home administration by district nurses should be explored.
……. As an alternative, oral cyanocobalamin can be offered at a dose of 1 mg per day until regular IM hydroxocobalamin can be resumed, i.e. once GP surgeries are able to do so safely, aiming to have a shortest possible break from regular injections.
…..Patients should be advised to monitor their symptoms and should contact their GP if they begin to experience neurological or neuropsychiatric symptoms such as pins and needles, numbness, problem with memory or concentration or irritability.”
Thank you to Rita – BSH Guidelines Programme Manager, for responding so swiftly.
My apologies I put this on social media a few days ago and forgot to blog!
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More news:
The BBC have shown interest in our issue but as things with COVID 19 have escalated since our initial contact and finding an interviewee, we are currently on the back burner. I will keep you posted with any further developments.
Research
Those of us in need of B12 injections know that they are not a placebo despite what some clinicians believe. In fact B12 is a known toxin scavenger and has long been identified as a poisons antidote.
So while some UK doctors are stopping B12 injections for those who need them to live well and function, medical researchers are looking at ways to combat COVID 19 and believe that B12 and nicotinamide (B3) can help.
SARS-Cov-2/Covid/19 ADULT RESPIRATORY DISTRESS SYNDROME /ARDS: HIGH DOSE IV METHYLCOBALAMIN IS A SAFE & COST EFFECTIVE RESCUE TREATMENT for ARDS
“A SAFE AND EFFICACIOUS PROPHYLACTIC /TREATMENT FOR COVID19, TO PREVENT AND TREAT ACUTE RESPIRATORY DISTRESS SYNDROME, ALREADY EXISTS: RESPECTIVELY using HIGH DOSE IM AND IV METHYLCOBALAMIN FORM OF VITAMIN B12. The hydroxocobalamin form of B12 has been used in ICUs in France, Italy and China for nearly 70 years, as the anti-CN antidote of choice. It is safe, licensed and available. Methylcobalamin would be preferable, for a number of research based reasons. But both could be life savers in the current health crisis.”
and:
Virtual screening and repurposing of FDA approved drugs against COVID-19 main protease
Key findings
COVID-19 Mpro formed a phylogenetic group with SARS CoV that was distant from MERS CoV. The identity% was 96.061 and 51.61 for COVID-19/SARS and COVID-19/MERS CoV sequence comparisons, respectively. The top 20 drugs in the virtual screening studies comprised a broad-spectrum antiviral (ribavirin), anti-hepatitis B virus (telbivudine), two vitamins (vitamin B12 and nicotinamide) and other miscellaneous systemically acting drugs. Of special interest, ribavirin had been used in treating cases of SARS CoV.
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Best wishes and keep safe,
Tracey
www.b12deficiency.info
You can find all the blogs relating to COVID 19 on this new page
Tracey, this is great news! I am in California and have been taking weekly B12 injections for 10 months and my recovery, while slooow, is still moving along. I’ve had some low-key battles with my GP; he wanted to switch to monthly after only 4 initial weekly injections. I sent him a lot of links from my online research, and he grudgingly allowed the weeklies to start up again.
The Netherlands site was what finally was enough info For my GP to give me an ongoing prescription for use as I chose depending on symptoms…and my neurologist also recommended that I continue. I’m also hoping that my GP did hid own research and learning…he was ignorant and needed to know more for me to Trust him. But I probably never will…and I always double-check doctors facts and orders after years of fertility treatments/efforts. Once Doctor errors are experienced, we learn to listen respectfully, then go online to verify or learn more.
You likely know this site, several excellent articles in English: https://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/misconceptions-about-a-b12-deficiency/
In March, with mandatory shelter-in-place orders, I emailed my GP that I need a prescription for home-injections of the B12 — then crossed my fingers. I was so relieved when he emailed back within minutes that the prescription was ready to pick up! Whew!
I appreciate all your good work! Thank you!
Terry McDonald
California
Thank you Terry, yes it is a great site! So glad to hear you are able to get treatment!
Best wishes Tracey
I think you should give credit where it is due.
It was the Pernicious Anaemia Society that sat down (virtually) with the BSH to hammer out these new regulations.,
Dear Frank
Thank you for your comment, I am giving credit where it is due – my blog states “Well done everyone who wrote to the BSH”. If you assume that everyone else who wrote to the BSH had no impact on the decision to change misinformed guidance that’s entirely your choice.
Best wishes
Tracey