Dosage

[Chippy82]

Can anyone tell me the best dosage for someone with a b12 deficiency with severe neurological involvement please. Thanks in advance

[clivealive Forum Support]

Hi again Chippy82 The recommendation is injected loading doses of hydroxocobamalin 1mg "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

[Chippy82 in reply to clivealive]

Thanks for your reply. I tried speaking to my dr yesterday regarding those guidelines but he's still sticking to his guns so i contacted Dr Chandy who was much more helpful! If I listen to my own Dr i will never see any improvement and i have three young children to think about who are missing out due to their mother being so poorly. Thanks again

[deniseinmilden]

Hi Chippy!

You poor soul.

Clive has given you the official recommendation which is excellent and appropriate but I feel I should just let you know there are some of us on much higher does because of the level of damage we sustained before we got treatment. The unofficial answer for some of us is "as much as you need to get better". When a great enough amount is injected daily or twice daily a significant improvement is possible. Several people use 2ml per day and at least one friend uses 3ml (2x 1.5mg hydroxocobalamin in 1ml) every day. Many people have successfully been on daily injections for decades.

If you do this you are likely to need to take a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron to support the extra B12 as it heals the damage.

For more information, including sources of supplies you could look up my profile by double clicking on my name and scroll down to see my post "My Experiences".

I hope you get the treatment you need ASAP and start to get better soon. If you have any further questions please ask.

Above all don't give up hope - with enough B12 and supporting supplements you can get reasonably well in time.

[Chippy82]

Thanks so much for your reply. I do hope to see some improvement. I've been unwell for many years but severely unwell for 6 years this March. I've nearly lost my life to severe sepsis several times and I have three children to be there for as I'm only 35, but I have been written off by doctors with central nervous system failure of unknown cause and under the palliative care team now our local hospice. I'm in a wheelchair and recently completely Bed bound and I get all nutrients through a hickman line in my chest due to complete paralysis of my digestive system. As I can't take anything orally at all, do you know if there are alternatives for the rest of the supplements you recommend?