B12: a simple 5-second poll for everyone

[Aspen]

Wow folks, this is super informative, thanks! I’ve been planning to ask for methyl or hydroxy B12 injections from my doc as I heard recently they’re supplements that tend to help cognitive ability for a good chunk of folks who try it. Had no idea there was such a variety of reactions to it. I think I’ll wait to try it til I’ve improved... at a 1/10 right now I don’t really have enough health to play around with it.

Take care out there.

 

[Balrog]

I'm new here and still trying to figure out where I fit into things. It appears my experience was different. I took a 1000mcg tablet the first time I tried B12 as recommended by a neurologist I saw due to low B12 serum level and symptoms. In less than 1 hour I had a huge reaction. My body seemed to literally start to come alive, like it had been trapped in a bad place for a long, long time. Since then I've struggled to find a mix / quantity of daily B12 that keeps the bad stuff away all the time. I continue to see improvement, slowly, but I'm not out of the woods yet.

Please note, I am not certain I have ME/CFS. I do have the symptoms but it appears I am responding to the B12 (by itself) which does not seem to be common for ME/CFS.

 

[seamyb]

I'm new here and still trying to figure out where I fit into things. It appears my experience was different. I took a 1000mcg tablet the first time I tried B12 as recommended by a neurologist I saw due to low B12 serum level and symptoms. In less than 1 hour I had a huge reaction. My body seemed to literally start to come alive, like it had been trapped in a bad place for a long, long time. Since then I've struggled to find a mix / quantity of daily B12 that keeps the bad stuff away all the time. I continue to see improvement, slowly, but I'm not out of the woods yet.

Please note, I am not certain I have ME/CFS. I do have the symptoms but it appears I am responding to the B12 (by itself) which does not seem to be common for ME/CFS.

Unfortunately, I too believed I was cured on my first dose of B12. My body didn't feel like it had ever been sick. But the effect soon began to decrease and I would deteriorate upon ceasing B12 for a few days.

I think it's about cycling B12. I'm currently on Greg's protocol (of B12 oils) which some have seen good results with. It should take care of the cycling.

 

[Balrog]

@seamyb that is interesting as what you describe does seem to be what I have experienced. There do remain marked improvements but I've also not stopped daily intake. I've moderated back and forth, based on symptoms.

I'm not sure where this goes yet but I did find out today I have JAK2 gene mutation which is linked with myelofibrosis and the doctor I'm seeing this Wednesday is expecting to be able address that possibility as well as multiple myeloma. Maybe things will get clearer after I meet with him.

 

[Pyrrhus]

Would anyone else like to share their initial vitamin B12 experience?

 

[Aerose91]

My B12 has been high and homocysteine low every time it has been tested. Not sure if b12 is getting metabolized but its high in my blood

 

[Wishful]

Would anyone else like to share their initial vitamin B12 experience?

I had a B12 shot (doctor's idea for fatigue) early in my ME. It had no noticeable effect.

About a decade or so in my ME, another doctor really pushed me to try B12 tablets, despite my previous experience. This time it made me severely suicidal; quite scary actually. When I reported that result, he dismissed that as impossible for B12. Arrogant old doctor.

I've taken the same tablets occasionally since then (after many months of avoiding them). No noticeable effect, even when I also take Folic acid (and usually other supplements that I only take occasionally).

 

[seamyb]

I had a B12 shot (doctor's idea for fatigue) early in my ME. It had no noticeable effect.

About a decade or so in my ME, another doctor really pushed me to try B12 tablets, despite my previous experience. This time it made me severely suicidal; quite scary actually. When I reported that result, he dismissed that as impossible for B12. Arrogant old doctor.

I've taken the same tablets occasionally since then (after many months of avoiding them). No noticeable effect, even when I also take Folic acid (and usually other supplements that I only take occasionally).

It's amazing how we're both in the category where cumin is beneficial, yet we have very different effects from B12. Makes absolutely no sense.

 

[DrUniverse]

Im taking 10000 ug and i get more energy & Well being. Seems that some nerves are regenerating.

 

[DrUniverse]

But before i didnt took NAC i had nearly no reaction.
I read a lot from Pyrrhus and the biochemical pathways. My Hypothesis all with NO Reaction had just low glutathion. Change my Mind @Pyrrhus

 

[Pyrrhus]

But before i didnt took NAC i had nearly no reaction.

Ah yes, many people have quite different reactions from B12 before and after they have improved their glutathione status...

 

[motorhead]

Would anyone else like to share their initial vitamin B12 experience?

Unfortunately, as reported in the dermaoils thread, no reaction whatsoever.
Next step trying tablets/get tested for MMA.

 

[Learner1]

Would anyone else like to share their initial vitamin B12 experience?

Took it, along with other methylation nutrients in and it cleared my thinking, reduced my fatigue, and helped reduce my mercury load.

 

[heapsreal]

Hydroxy b12 shots 6000-10000iu has helped but hit and miss. I initially used it regularly at 6000iu mon wed fri for several weeks and not a great deal was gained. I then just used it if i had a crash and would use the above dose. It was hit and miss but when it hit it helped clear the heavy fog some. I had no negatives from these shots so i still do this as for me it cant hurt.

Im sure he wont mind me sharing this, @alex3619 from PR use to share a ride with me to the drs. One day he said he'd never tried b12 shots, i said i will line it up in a couple of days. So i went around to Alex place and gave him a 1000mcg shot of hydroxy b12. Then we chatted about things like we normally do and forgot all about the b12 as we were down a rabbit hole discussing some cfs issue. Alex has a sharp mind anyway, i can only imagine he would be brilliant before cfs struck, but intially that day as normal for him you can see the cogs although quite sharp they were struggling (maybe missing a gear here and there)and i could see the normal fatigue on his face. Our discussions are funny as both of us will say something like, you know that dr that uses that drug called um thingy and it does that thingmabob on the immune system. We some how understand each other.
Any after an hour of ums and arrr's and thingymabobs, i noticed Alex face spark up and he was talking faster. I stopped what we were talking about and told Alex this and he said you noticed it as he thought it might be his imagination. He definitely had an increase in clarity that was very obvious. From memory it didnt last more than the day.

So theres something to b12 in cfsme but also its hit and miss but worth a shot.

 

[cristi_b]

Would anyone else like to share their initial vitamin B12 experience?

I've tried B12 in the form of hydroxy and methyl and I get both good things and bad things from it.

For example hydroxy seems to improve my vision more than the methyl kind. I'm not sure why it affects my eyesight, I get this reaction from other vitamins and supplements as well, must be something neurological as my strabismus improves as well. Whenever I've tried to discuss with a ophthalmologist I get the same nevous reply: "just wear your glasses", I suppose that's just what to say when they don't know why it happens.

Continuing to take any B12 for several days brings bad effects like insomnia and irritability. Not sure why this happens either, first I thought it was because I don't need any more B12, my levels are over average. But then again, my father(who has a dementia diagnosis and low B12) has the same bad reaction. Maybe it's genetic as well.

Don't know if it's relevant but I have homozigotous MTHFR 1298 mutation and heterozigotous MTRR I22M, CBS 833T, MTRR A66G, several other mutations for choline and butyrylcholinesterase.

 

[chronicproblems]

Only thing I can tolerate and which helps little with horrible RLS

 

[ironlion37]

FIrst time I got a methylcoabalamin shot, it was like someone had poured life into my body. Over the next 4 years, I figured out I have to inject 4mg in 1ml saline solution every 48 hours and that gives me great health.

The problem for me is that Oxford Biosciences switched suppliers last year and what they sell no longer does me any good after the switch. I'm suffering again pretty intensely. If anyone knows of a source of high quality, injectable MeB12 powder, please let me know.