I have Lyme disease and about 5 months ago I had a reaction that left me with chemical and food sensitivities so much so I could only eat 3 foods for 4 months . I am now adding in foods every week - I had a lot of weakness and heart palps and can manage to take a b12 methyl sub , iron And magnesium . I have had a massive increase in neuro issues and insomnia , I go through phases of heart palpitations usually at night time, my hands are wrinkly and cracked and my feet are cold and sore and I’m a bit wobbly when I walk. None of these where issues until I started the b12 ( I took1000mg for 10 days and now 500mg a day) I also get a racing mind and a little bit of confusion I’m just finding it hard to distinguish these symptoms from lyme / overactive nervous system
I strongly suspect a gene mutation / methylation issue is the prob as I can’t tolerate methylfolate even one small drop aprox 100mg I feel like I’m going to jump out of my skin and my heart palpitations are severe . I am due to go back to the doc next week for bloods and testing. I have Had regular bloods and all vits and minerals
have always been at good levels throughout the years. I do remember one occasion where my folate was low however but I was just told to supplement and it was ok after that.
I know due to how sensitive I am to food and supplements I would not fair well To b12 shots. I am relying on the bloods to do a bit of investigation work myself as my doctor already hasn’t given me much hope on a plan .
I know I have to stop b12 before the bloods so when should I do this?
I am hoping someone can advise if my symptoms sound like I’m on the right path and not just getting worse due to worsening of my deficiency . Any advice on supplementing with sub b12 should I go for more - I do notice at 1000mg I have increased anxiety.
Thank. You
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Tad122
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It really sound as if you are one of the many people sensitive to methylcobalamin. Switch to cyanocobalamin. Just as good as methylcobalamin, if not better.
I have a terrible reaction to methylcobalamin injections, and I know of others with the same problem. I am fine with hydroxocobalamin and cyanocobalamin and I've not heard of any of the people who responded poorly to methylcobalamin having a similar reaction with either of the others.
You might need to change the sort of b12 you are taking. Methylcobalamin does not suit everyone and can actually give tiy anxiety symptoms and restless feelings.
At least you know you are absorbing it if some of your symptoms stop whilst off it.
B12 is made in cynocobalamin and Hydroxocobalamin too .folic acid 200-400 mcg should be fine.
My daughter tolerates folic acid and hydrox injections but on a very limited diet as bad digestion issues.
oh this is interesting ! It never crossed my mind that this could be the issue .
Ok I will try cynocobalamin ! Thank you for the response
so you are just taking iron, mag and b12 now? no B9 (folate, folic acid)? i feel worse on B9. this has happened several times and i won't take it anymore.
have you had a proper look at your thyroid. no the unreliable TSH test. here is a good patients movement on thyroid that can tell you what tests are decent. stopthethyroidmadness.com/
i initially found this group by searching for "b12 making symptoms worse". you're not the only one. have you searched the forum?
also, don't assume that your doctor is on top of the science or that the tests you take are good tests. unfortunately they all need to be vetted. : ( i've found this out the hard way over many years. the common blood test for b12, TSH, blood cortisol, and blood h pylori are all unreliable. it's good to find communities like this one where people know what's up.
I have the same problem, when i take folate acid. My neurologic problems get worse. My doc told me to take 5000mcg folate acid and i take it for 2 months. So i told my doc about it and do blood test my folate is now more than enough. He advise my to stop. And now after a month quit the folate i feel slowly better. I also take every other day a 1000mcg hydroxocobalamin shot. My pins and needles gets finaly better.
Thank you everyone for the replies - it’s so good to speak (!) to people that can offer suggestions !
Thunderfdoggy - I was taking a folic acid sup but switching to methylfolate as I suspected the mthfr gene ... not sure if that was the right thing to do .. one of the foods I can tolerate is a fortified cereal which I stopped eating too. I try to get my folate through leafy greens broccoli and kale .
I’m currently not treating Lyme - I’m working on building myself up nutritionally to be able to tolerate anything to kill off the lyme .
I was doing quite well on a herbal protocol so hopefully I can go back to that.
Yes I have gotten my thyroid checked and all within normal range. Maybe it is something I need to get checked again.
Haha yes that’s how I found the forum too- I am currently having a browse through some of the posts and they are very helpful.
I am finding this all very overwhelming though it is a very tricky deficiency.. yes my doctor is not up to speed.. Maybe you had a similar experience as me with lyme doctors and trying to find one that would help - it feels like this all over again - throw in a global pandemic and everything is a little harder ! I just have to keep reading and A bit of trial and error .. thank you for taking the time to post ...really valuable info
if you have an issue with folate... you'll have an issue with methyl folate or anything in that B9 group. easiest way to find out to to remove it and reintroduce it. B9 makes me feel bad within a week.
it is tricky. i just keep trying to eliminate possibilities and moving forward best i can. good luck
Just one more thing I have come across on the forum - it has been mentioned that the symptoms I am experiencing are a type of detox or b12 resistance - I’ve never heard of this before ? Any thoughts on this one ? Thank you
Hi. Magnesium lowers my cortisol levels and it then cause some of the symptoms you mentioned. Feeling wobbly etc. I have problems with B12 methyl and am okay with cynocobalimin.
An update - I have been taking cyano in sublingual tablet form for 5 days - I worked up to 1000mg no adverse Mental reactions anxiety and confusion has definitely calmed thank you to everyone who took the time to reply I am very grateful for your advice !!! however I am aching all over - this seems to have stayed the same my feet in particular are just achy and painful - I am getting bouts of heart palps no weakness anymore though And a little more energy . I am eating bananas and drinking coconut water and taking electrolyte boost for potassium - does this sound like reversing out syndrome ? Should I persevere ? The aches are like I have been at the gym and done a tough workout or I am coming down with the flu everything hurts !
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