Why are B12 supplements making my symptoms so much worse?

[TinaT]

If what you've inadvertently done is crank up methylation, you can get relief within a few minutes with the correct supplement(s).

For B12 methylation, would you share your short list of what supplements you think might quickly help?

 

[TinaT]

View attachment 50777


do not take anything if you do not feel comfortable with it.
its a common mistake to just pop pills to get some relief, never works, always bites back.


you are agitated right now.
you can take of the stress of trying and instead try to rest or simulate sleeping. sounds like a joke but gives me at least a bit of rest. even if i had the feeling of not sleeping at all... there are those micro sleep moments we dont remember.

my friend had the same problem, she took active vitamins, got better on other things like energy, but couldnt sleep for 3 days.
she had to stop everything. when she could sleep again she went with the inactive vitamins. works better for her.
so maybe get a break of all those things until you stabilize.

Thank you for the suggestions. I didn't sleep great last night. But I did finally sleep a decent amount. I'll be very happy if that continues for the next few nights, bc that will mean that I can tolerate the B12 injections.

I did see a hematologist today. He says some of my symptoms could be caused by low iron. So he convinced me to do an iron infusion in two weeks. That can help anxiety (which can cause reflux), PEM, and immunity (my immunity has been shot since Christmas; in fact I'm sick again now and have been almost every other week since then).

Thank you again. And I hope you enjoy your weekend. 🥰

 

[TinaT]

Oh I meant to say that I did finally sleep and without any Benadryl. That was on the same day as an injection. So that was good.

Not so good is that, from my reading, surgery can eliminate B12 stores.. And the damage can be very hard to repair and take a long time. So I'm not feeling very optimistic anymore. 😒

 

[linusbert]

i can assure you one thing, you will have a hard time to get better if you keep this negative thinking.
i understand where this is coming from, but you need to stop it immediately.

mental stress is one of the factors a lot us suffer the worst crashes. it directly sucks your body of healing capacity. when your body is in stress its working on the adrenals, its producing cortisol. prolonged high levels of cortisol lead to reduced healing capacities and long term to exhaustion of your adrenals. which is another cause for fatigue.
(btw, that way of fatigue and also prevention of this is vitamin C, B5 (e.g. pantethine), (good) salt.)

Not so good is that, from my reading, surgery can eliminate B12 stores..

you shouldnt be discouraged by this, but actually ENcouraged. this gives you direct reason for your situation. with a very potent and effective treatment. many of us still dont know after decades. so you actually have a real chance of recovery.


for recovery you should at least plan in as much time as you got sick. so you've been sick for one year. lets see where you are next year at that time.
and for the meantime while your body slowly heals, you should focus on mental health. doing meditation. stay calm. dont get stress. see it as a sabathical... (i know, many of us are overachievers so its especially hard). this could be chance to permanently fix something in life.

and in regards of getting better, stop judging by emotions. do something rational, like making a protocol, check after every month or even 3 month how this compares by the recent check. make a checklist on paper and follow it.
actually, you can make a BLOG here in the forum. name it something like "my recovery story". and write once a month how your progress is going.
i really like when people give feedback about their situations and do not just vanish.

i am positive for you, you should be too.
get well soon!


EDIT: just as i was writing, a friend of mine, a naturopath vet, injected this a dog and got good results.
"Ubichinon compositum" can be injected subcutaneous, is also allowed for human application. some ingredients though gave me raised eyebrows.
but you do not need to take this product especially, but maybe you can find some vitamin complex which is injectable bypassing your gastro and gives some extra support.

as you do not eat much animal products, you should also check into L-carnitine and Creatine. those can be sourced vegan and have a BIG potential to give you a boost in energy. in this forum people use l-carnitin or acetyl-carnitine or carnitine fumarate. its actually suggested for the methylation protocols. i think you follow freddds protocol, that especially uses carnitine (fumarate).
vitamin C and IRON are used to make l-carnitine and creatine. a deficiency in any of those will not produce enough.

 

[cheeseater]

Some very elaborate constructs for why normal supplemental amounts of B12 cannot be taken. I have never heard of such a thing.

 

[TinaT]

i can assure you one thing, you will have a hard time to get better if you keep this negative thinking.
i understand where this is coming from, but you need to stop it immediately.

mental stress is one of the factors a lot us suffer the worst crashes. it directly sucks your body of healing capacity. when your body is in stress its working on the adrenals, its producing cortisol. prolonged high levels of cortisol lead to reduced healing capacities and long term to exhaustion of your adrenals. which is another cause for fatigue.
(btw, that way of fatigue and also prevention of this is vitamin C, B5 (e.g. pantethine), (good) salt.)


you shouldnt be discouraged by this, but actually ENcouraged. this gives you direct reason for your situation. with a very potent and effective treatment. many of us still dont know after decades. so you actually have a real chance of recovery.


for recovery you should at least plan in as much time as you got sick. so you've been sick for one year. lets see where you are next year at that time.
and for the meantime while your body slowly heals, you should focus on mental health. doing meditation. stay calm. dont get stress. see it as a sabathical... (i know, many of us are overachievers so its especially hard). this could be chance to permanently fix something in life.

and in regards of getting better, stop judging by emotions. do something rational, like making a protocol, check after every month or even 3 month how this compares by the recent check. make a checklist on paper and follow it.
actually, you can make a BLOG here in the forum. name it something like "my recovery story". and write once a month how your progress is going.
i really like when people give feedback about their situations and do not just vanish.

i am positive for you, you should be too.
get well soon!


EDIT: just as i was writing, a friend of mine, a naturopath vet, injected this a dog and got good results.
"Ubichinon compositum" can be injected subcutaneous, is also allowed for human application. some ingredients though gave me raised eyebrows.
but you do not need to take this product especially, but maybe you can find some vitamin complex which is injectable bypassing your gastro and gives some extra support.

as you do not eat much animal products, you should also check into L-carnitine and Creatine. those can be sourced vegan and have a BIG potential to give you a boost in energy. in this forum people use l-carnitin or acetyl-carnitine or carnitine fumarate. its actually suggested for the methylation protocols. i think you follow freddds protocol, that especially uses carnitine (fumarate).
vitamin C and IRON are used to make l-carnitine and creatine. a deficiency in any of those will not produce enough.

I'm so tired I need to reply more later. But I know I need to relax.

I just wanted to add that B12 methyl injections (1000 mcg) have caused severe insomnia, 3 nights so far.

And I'm at a loss as to what supplements might help at this point. I don't seem to respond well to any of them. But I would appreciate any suggestions for anything that might work immediately. Once I hopefully get a little more refreshed, I'm going to read back through your suggestions so far and maybe try the most likely suspects.

I should add that pepsid causes some insomnia and anxiety. The B12 has just sent that into overdrive.

I stopped the pepsid last night with no plans to start back regardless of what symptoms I'm experiencing, after reading a very long discussion with many people who experienced similar, debilitating symptoms just from pepsid alone.

(And anyone who has chronic fatigue, who is also taking any antacids, really needs to reconsider those meds, from my reading. Lots of people complaining about disabling symptoms including unusual fatigue and including people in their 20s.)

I'm pretty sure a lot of those side effects relate to a B12 deficiency. But I'm also pretty sure that I'm critically low in other nutrients required to utilize the B12, bc of the high doses of pepsid I've taken for almost a year (and despite a very nutrient dense diet other than B12 and probably iron).

I'm tempted to either take a B complex or multivitamin. But then if I'm low on just a couple of things, I don't see how those would balance out whatever my problem might be.

Thank you again, and to everyone who commented and anyone who has any other especially immediate suggestions as far as sleep tonight (to offset the B12). I do not think this is a normal anxiety reaction. Something is seriously abnormal.

 

[linusbert]

And I'm at a loss as to what supplements might help at this point. I don't seem to respond well to any of them. But I would appreciate any suggestions for anything that might work immediately. Once I hopefully get a little more refreshed, I'm going to read back through your suggestions so far and maybe try the most likely suspects.

try niacinamid. if its overmethylation it will help.
start with 50 mg, take anothe 50mg every 30 minutes its not getting better. stop at 500mg.

a friend of mine could fix it with magnesium.
at times it was calcium who helped.


why do you inject methylcobalamin?
medical literature does cyanocobalamin. i do not suggest that! just wondering.
try hydroxocobalamin. its much easier.

I'm tempted to either take a B complex or multivitamin. But then if I'm low on just a couple of things, I don't see how those would balance out whatever my problem might be.

thats what i would recommend always when taking anything high dose... to prevent disbalances.

try a different schema, not every day but make a break of 2 days, so do like mo+thurs+sunday.
many report much better tolerance of everythiing.
i cant do anything daily. but vitamin D once a week. B complex 2 times a week works.

Something is seriously abnormal.

yes it is.
but not for folks in this forum. actually kinda usual reaction for many of us here.
it will go away eventually! dont think about it. dont fear it. it will pass, things will get better.

 

[JES]

Exactly. It is not abnormal at all for ME/CFS patients to react badly to vitamin B12. In fact I react negatively to most supplemental vitamins in large doses and by large I mean anything more than can be found in a multivitamin in approximately the RDA dosage. Vitamins like vitamin B12 and C have a reputation of being virtually harmless because they are difficult to overdose and indeed, most likely any worsening you get from them is temporary, but just like with certain foods and exercise that is supposed to be healthy for the average person, it can have the opposite effect in ME/CFS patients.

You said you have had blood tests done for B12, have you got the results? If not, why supplement with B12 before you know you are deficient? Also if you supplemented before the test it might have skewed the results. Ideal would be to have a blood test result before supplementation to get a good baseline and then adjust from there.

 

[TinaT]

try niacinamid. if its overmethylation it will help.
start with 50 mg, take anothe 50mg every 30 minutes its not getting better. stop at 500mg.

a friend of mine could fix it with magnesium.
at times it was calcium who helped.


why do you inject methylcobalamin?
medical literature does cyanocobalamin. i do not suggest that! just wondering.
try hydroxocobalamin. its much easier.


thats what i would recommend always when taking anything high dose... to prevent disbalances.

try a different schema, not every day but make a break of 2 days, so do like mo+thurs+sunday.
many report much better tolerance of everythiing.
i cant do anything daily. but vitamin D once a week. B complex 2 times a week works.



yes it is.
but not for folks in this forum. actually kinda usual reaction for many of us here.
it will go away eventually! dont think about it. dont fear it. it will pass, things will get better.

Thank you. Strange thing. I ate liver yesterday and slept very well. Unfortunately that triggered reflux so I can't easily continue.

Today I didn't. And I'm sitting here at 1:45 am shaking with sleep impossible. I'm just about to go take niacidimide. I'm really afraid to take something for the first time before sleep but I'm desperate. I ordered methylfolate and really wish that had arrived. I guess that's a main B12 co-factor.

The thing is, B12 deficiency can cause ME. If it does, high doses are needed to check. So it's really chicken / egg.

I really appreciate your suggestion. I'm going through hell and I know lots of other people are, too.

Thank you. 🙏 That the niacimide helps and doesn't make me worse.

 

[TinaT]

Oh man. This link says you can damage organs if you don't flush out the niacin. Then in the next section it says that it can help sleep. Now I'm really scared to take it. Have you ever heard of this?

I'm attaching a screenshot and here's the link:

https://www.drlamcoaching.com/adrenal-fatigue/recovery/niacin-chronic-afs/

 

[linusbert]

Thank you. Strange thing. I ate liver yesterday and slept very well. Unfortunately that triggered reflux so I can't easily continue.

thats a very good thing. liver also has cholin! and also has good fats you need! and tons of retinol.
try out eggyolks or the whole egg with runny yolk next. if its cholin or fats you need, eggs will help.
there is also liver saussage, its a bit more mild than a regular liver you might try that as well... though the herbs give me reflux.

do not underestimate the role of good saturated fats and cholesterol and cholin. they are massively required for hormone system. if you do not have these. your body goes bonkers. sleep problems, depression.. that kinda stuff.

Oh man. This link says you can damage organs if you don't flush out the niacin. Then in the next section it says that it can help sleep. Now I'm really scared to take it. Have you ever heard of this?

do not even think about it.
also you should start slow with like 50mg which is a bit more than RDA. and then take one more 50mg every 30 minutes - if it doesnt help with total dose of 500mg, its not your problem.

if you have the feeling you get worse if you take more nicotinamid JUST STOP

folate is necessary, AS IS biotin. high dose B12 is highly dependent on BIOTIN. in your case i would take like 1-10mg biotin to your b12 shots.
if you get worse skin , blackhats, especially in face, this is a common sign of biotin deficiency after taking high dose b12.

i send my grandpa once a package of vitamin D pills, 1000 IU which is roughly 100% RDA. he refused to take it, because in the cover notes were written that it could make kidney damage (which btw never has been proven).
so he'd rather live on with vitamin D deficiency... but the pharaceutical heart and fat and blood pressure medications which have a really bad side effects profile.. he just gulps down every day without thinking about it.
so dont think too much about it. be careful, listen to your body signals, if you feel worse after something, just stop it.

 

[TinaT]

Thank you!!!

I just ordered methyl folate again, hopefully to arrive sooner, another brand of niacinamide, and a couple of B complex. Maybe those have biotin?

The bad thing about the food is basically any fatty meat causes reflux. And i really think all of these deficiencies are causing reflux. Anyway that includes egg yolks and any other fatty meat. I'm going to try today to eat very small amounts of liver throughout the day (oh joy). Sometimes i can tolerate small amounts of otherwise not okay foods. The other night was just a miracle, with the liver and really good sleep in the middle of this otherwise dumpster fire of a week.

Not sure whether I mentioned but I actually went for a 3 mile run and lifted weights the day that I ate the liver as an afternoon snack (and turkey breast for dinner). Still sleepy at night then a little shaky at first in bed but pretty quickly relaxed and fell into deep sleep. That's the first I've been able to tolerate exercise for probably a month.

Last night I tried just the turkey breast for dinner, hoping the triptophan might have helped. That didn't work.

I still think it's B12 and iron. And maybe liver has the necessary cofactors? That's not going to help me unless I can figure out a way to take it without my reflux getting worse. That becomes intolerable and makes sleep impossible without meds that I'm desperately trying to stop. I'm on day 3 or 4 without pepsid and that's been a huge victory.

I will look for some biotin if that's not on these b complex vitamins. I'm reading you need them all together? Those in the past have caused insomnia. 😫

Thank you thank you thank you! This forum has been (and you specifically have been) a mental lifeline when I'm shaking and have total insomnia at 3 a.m. last night I ate a banana but still had to take zolpidem to sleep for a few hours. Woke up with chest pain that is scary. I'm just hoping that's the anxiety I've developed from all of this. And not some refeeding / methylation serious issue. 😓

 

[linusbert]

Maybe those have biotin?

i dont know the product, cant say. usually a b complex has like 50mg to 500mg.

i still would get a high dose in addition. you might play around a bit.

i for example do it like this:
- b complex like 3x RDA - 20x rda of each vitamin, includes 500mg biotin, b12 = 300ug adenosylcobalamin
- i take extra 2500-5000mg biotin
- i take extra 1 drop with MHA B12, 1000ug in total
- i take extra 20k-40.000 iu vitamin D a week or 4000-5000k a day

The bad thing about the food is basically any fatty meat causes reflux.

that sounds like too less acid and / or gallbladder.
take 2 table spoons of apple cider vinegar in the middle of your meal. thou any vinegar will work.

OR
betain hydrochloric acid while you are eating. there a protocols for this, idk dosage. take too much it gets worse, take too less nothing happens. rule is too start with low dose, and increase until you get more acid reflux, and then cut back to the previous level were u didnt get it.

you might also try some digestive enzymes, those are from fungus or pig.
Proteasen, Amylasen, especially Lipasen

too less stomach acid is a common problem, especially for vegans and vegetarians. you need more.
also you could have too less LIPASE coming from pancreas. need to take that as well.



usually that kind of problem comes if you eat to less good fats like cholin and others.
or with pancreas insufficiency (i doubt that in your case), or gallbladder problems.

try the eggyolks only without protein. is much easier on the stomach. you dont even need to cook it. just buy organic freerange pasture raised eggs, clean with water, then put contents in a glas with a bit water, fish the yolk out with a spoon.
check the eggs before with the floating test, if they fall down in a glas of water they are good, if they float or stand up do not eat them raw. if they float = direct garbage.

Not sure whether I mentioned but I actually went for a 3 mile run and lifted weights the day that I ate the liver as an afternoon snack

this basically in my logic rules out any persisten strong deficiency, because those need to regenerate red blood cells and this takes weeks and month.
but this is good news, you maybe can be fixed easier and faster than i did think at first.

And not some refeeding / methylation serious issue. 😓

if your doctors did ecg (especially 24h) and visualization, ultra sonic of heart and didnt find anything. i'd say you have nothing which will kill you anytime soon.

Thank you thank you thank you! This forum has been (and you specifically have been)

dont thank yet, a hefty invoice will come later

 

[Wanja]

Hi! Me again!
I just wondered How B12 affects the brain. Does it cause depletion of dopamine? I get bad anhedonia and insomnia and restlessness when i take it.
How does it affect neurotransmitters? Or is there another mechanism for this?

Hey I was wondering how you are doing by now? Did you improve or find something that helped?


I also suffer from severe anhedonia and depersonalisation generally which sounds exactly like what you experience. I know all the sensations you described with showering etc...

 

[hips_fan]

I have one theory Regarding this :-

1) When we supplement with Methylcobalamin or cyanocobalamin. It starts converting Homocysteine to Methionine via Methionine synthase by donating its methyl group.

2)This Raises Methionine in our body. Now Methionine adenosyltransferase starts converting Methionine
to SAME which utilizes ATP. Hence we start getting PEM like symptoms because our ATP further reduces.

 

[DomSaxum]

Totally anecdotal, of course, but 2,000 mg of B12 seems to help with my lack of stamina. 'Balance of Nature', however, seems to do nothing at all for me.
For whatever those observations are worth.

 

[Dysfunkion]

I have PFS technically but was on a combination of supplements a the time that made my symptoms more PSSD presenting up front because I had the same thing the OP had going on but worse with waves of burning brain at the worst of it that got so bad I couldn't handle my methyl-b12 I needed anymore at 1000 mcg but got it back with MK7 K2 100mcg for some reason beyond me. I also react differently to different fors of b12 to make everything weirder with this condition. Cyan b12 made me feel wide awake but in a really uncomfortable hollow feeling way somehow without the neuropathy flare but my sexual functioning got even worse and all I felt was terror and dread on it. Hydroxy b12 somehow made me even more tired. The only form that works like it should is methyl-b12.

Currently I am largely recovered from the condition I have some remaining sexual problems but they aren't terrible and I still need to regain some general energy and reactions to stimulants/nicotine but I'm not too far off now. I'm definitely gonna be a recovery case but it's probably at this rate gonna take another year or so. I may only play with my b12 dose a bit more but B-vitamins for me with this appear to be pretty volatile and every case with them reaction wise appears to be a little different. I do want to try individual one's to see how I react to them to get a better picture of what is going on but I can't afford another major crash in my life. Like methyl-b12 has completely crashed some people before but I absolutely need it.