ncbi.nlm.nih.gov/pmc/articl...
Thought this may be an interesting read for some of the scientifically minded on here. It mentions a possible reason why such high doses are needed - a blockage of B12 transport over the blood brain barrier. (They had done previous research which found high homocysteine levels and low B12 levels in the cerebrospinal fluid, although levels in the blood were fine).
Happy reading! X
Thanks fot that .Yes indeed , interesting . Another piece of the B12 jig-saw puzzle .
I fought for decades to get B12 injections for my ME, but with no luck. I then started self-injecting, and now do one every month. It definitely helps a lot.
Which way is the most preferred method subcutaneously or IM?
Subcutaneously. It's not difficult.
Unfortunately, ME/FM/CFS is one (some?) of those conditions where it's really difficult to pin down if something has a beneficial effect. Changes in diet, taking antioxidants, selenium, magnesium, vitamin D - all have been 'shown' to relieve the symptoms.
Okay, sure. Was just interesting for me in that they had findings that suggested that for some people there was a blockage of B12 transport over the blood-brain barrier - perhaps a reason why some of us are dependent on such frequent injections!
Yup, I've often thought there might be something in that. It would explain why the first symptoms I see if I delay injecting are the neuropsychiatric ones.
Interesting! I usually think it’s the exhaustion returning that’s my first symptom but reading this thread makes me realise it’s my ability to string a sentence together. I forget words and/or I forget what I’m talking about before I get to the end of the sentence.
Yeah...for me it's headache, tingling in the hands and feet and exhaustion... not sure whether that is only brain related.
But am wondering whether the mechanism used to transport B12 into the cerebrospinal fluid is the same mechanism used to get it into cells generally... do they even know?😊
I would suspect not.
The mechanism for getting B12 into cells is well known. Most people assume that the transportation across the blood-brain barrier is the same. But I cannot find anything that has proven that is so.
One problem is that, in normal cells, as soon as the B12 molecule is taken into the cell, the top ligand is removed to form cob(II)alamin. Would it be that molecule that moves into the brain, or would another form of B12 be created?
Great article, thank you
So interesting! Thanks for posting. I've had b12 deficiency identified 15 years ago, after really low blood levels but a negative PAS test. Had been knackered for many years. Got GP b12 injections every 8 weeks (until recent covid switch to oral daily) but was badly wiped out for 5 of those 8 weeks with lots of neuro symptoms. A couple of years ago resorted to self injecting. What a difference! Settled down to one SI every 4 days or so. Took a good year or more to see gradual improvement of neuro symptoms. First real change in 14 years. Realise that I never got loading doses when first diagnosed. GPs (various) put neuro stuff down to CFS, and kept checking bloods pointlessly for B12 levels despite injections and saying they were more than high enough (blah blah). I've felt since SI that injection improves things so far, but there is still a CFS component going on behind the b12 deficiency.
Enthusiastic activity on good days wipes me out for at least 3 days or much longer if not watchful, pacing, etc. Injection or not.
I'm wondering if the b12 CFS link is in play for me.
I've tried staying with a daily oral spray since xmas but been going down hill. Doing an SI every 3 weeks when I can't stand the muscle twitching, and palpitations and gaspiness, cold in bed etc. But can't get any more vials from Germany since Brexit. Ekeing out what I have left.
Any advice about amount of b12 spray or where else to order quality vials?
Anyone else with CFS and B12 deficiency?
And finally, my balance has never quite recovered. Fall over regularly, but at worst walk like a drunk for first hour or so after getting up. Anyone else find this?
RoMello, great to hear that self injecting has really improved things for you.
It may be best to start a new threads for each of your questions:
"Any advice about amount of b12 spray or where else to order quality vials?
Anyone else with CFS and B12 deficiency?
And finally, my balance has never quite recovered. Fall over regularly, but at worst walk like a drunk for first hour or so after getting up. Anyone else find this?"
People may miss it here and they do sound like things that would be interesting to discuss. 
Hypokalemia with high frequency B12 injections
B12 injection side effects + testing frequency
Interesting article on more sustainable B12 production
Injecting once per week but B12 levels have dropped by over 50% in 7 months
