If your doctor worries that too much ... - Pernicious Anaemi...

Pernicious Anaemia Society

31,955 members23,096 posts

If your doctor worries that too much B12 is toxic, show them this study on ALS & B12

jade_s profile image
12 Replies

ALS is the same as Lou Gehrig's disease, and is also what Stephen Hawking had. It is a neurodegenerative disease, thought to mostly affect the motor neurons.

Ryosuke Oki, et al, "Efficacy and Safety of Ultrahigh-Dose Methylcobalamin in Early-Stage Amyotrophic Lateral Sclerosis" JAMA Neurol. 2022;79(6):575-583. jamanetwork.com/journals/ja...

From the abstract:

Does twice-weekly intramuscular injection of 50-mg ultrahigh-dose methylcobalamin slow clinical progression in early-stage amyotrophic lateral sclerosis?

Results A total of 130 patients (mean [SD] age, 61.0 [11.7] years; 74 men [56.9%]) were randomly assigned to methylcobalamin or placebo (65 each). ... The least square means difference in ALSFRS-R total score at week 16 of the randomized period was 1.97 points greater with methylcobalamin than placebo (−2.66 vs −4.63; 95% CI, 0.44-3.50; P = .01). The incidence of adverse events was similar between the 2 groups.

Conclusions and Relevance : Results of this randomized clinical trial showed that ultrahigh-dose methylcobalamin was efficacious in slowing functional decline in patients with early-stage ALS and with moderate progression rate and was safe to use during the 16-week treatment period.

These people were injected with 50 mg twice a week - that is the same as 50,000 mcg, which is 50 !! of our little German ampoules - injected all at once, twice a week, for 16 weeks.

There are many other studies like this one scholar.google.com/scholar?...

And I'm pretty sure they aren't going by serum B12 levels 🤪

Written by
jade_s profile image
jade_s
To view profiles and participate in discussions please or .
Read more about...
12 Replies
WIZARD6787 profile image
WIZARD6787

Thank you for that.

I keep coming across that people with functional B12 Deficiency benefit from megadoses with no amounts listed. This is the first time I have seen the term Ulta megadoses.

This lead me to that 60 years ago 1 mg became a standard for B12 arbitrarily and the reason for that is the weight of cobalamin 1 mg is also one ml.

I administer 10 mg SL and inject 5 mg some days. 105 mg per week of B12.

So in my case study of one 1mg every other day is a microdose.

There are 30 mg in 1 ml of B6. The treatment for B6 deficiency is 1 ml every day for life.

I am an environmental scientist and am now an old timer who knows the origin of many of the setbacks in use today. In some cases I have talked to the people that made them up with no scientific basis as there was none in 1969. Many of the setbacks are in direct conflict with the current science.

jade_s profile image
jade_s in reply to WIZARD6787

This is also the first time i've seen "ultra high doses" . Made me chuckle 😂 because it is a rather high dose!

Yet it is "slightly" less than the 5 g in cyanokit for cyanide poisoning / smoke inhalation. 5 g = 5000 mg = 5000 B12 ampoules... 😱 chemm.hhs.gov/countermeasur... There they do have to worry about adverse side effects... chemm.hhs.gov/countermeasur... still not "toxic" per se even at that dose.

I have also seen how some research can evolve into incorrect yet entrenched thinking because someone misquoted some paper decades ago.

Sneedle profile image
Sneedle

What else might it be efficacious in slowing? Dementia, Parkinsons? That's such a massive dose, really fascinating thanks for posting.

jade_s profile image
jade_s in reply to Sneedle

Alzheimer's! scholar.google.com/scholar?...

Multiple Sclerosis - may slow down progression scholar.google.com/scholar?...

(Sorry to tired to pull out specific studies ;) )

Parkinson's is due to dopamine levels so not sure about that. But it may be misdiagnosed for B12D in some rare cases.

Very possibly others. I haven't looked into different types of dementia & b12 recently but would not be surprised if it also served a protective role to some extent.

Sleepybunny profile image
Sleepybunny in reply to jade_s

B12 is a co-factor in the production of neurotransmitters such as serotonin and dopamine.

jade_s profile image
jade_s in reply to Sleepybunny

Thanks! I don't know if i ever knew that or just forgot it. That could explain why it helps in ADHD...

Mixteca profile image
Mixteca in reply to jade_s

It's made no difference to my ADHD...🧐

PhilAB profile image
PhilAB in reply to Mixteca

Heavy metal detox will help

jade_s profile image
jade_s in reply to Sneedle

Yeah very nearly fell off my chair when i saw the dose 😂

Sneedle profile image
Sneedle in reply to jade_s

I know, quite!😱😂

Sleepybunny profile image
Sleepybunny

Here's a few more links for those with doctors who lack understanding.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Rexz profile image
Rexz

Excellent, informative post jade!

You may also like...

Doctors believe b12 injections toxic

then told him about my b12 injections but I take. He believes b12 injections are toxic...,I think...

Too much b12 possible?

Hi. I’ve only just started self injecting b12 (once so far) and plan to do it every 2 days until I...

\"Dangerous\" to give too much B12?

to get my new GP to agree to jabs every month-6 weeks which is what I seem to need given my...

How much time it takes for the b12 to show their effect?

b12 deficiency in June 2016. I started taking injections in July..so it's roughly 2 months...I had...

Can too much B12 damage the liver?

prescription for her B12 injections. She gives herself shots of 1000 mcg cyanocobalamin weekly,...