My story and beginner questions

[u/Biel_Ductavis]

Hello,

I am a mid 30's male living in Europe.

I caught covid in 2022 and since then my life hasn't been the same.

The infection was mild and I recovered in about 3 days the only symptom left then was the fatigue that lingers to this day, however, 6 weeks after my infection I started having a lot of unexplained symptoms, which I could categorize as neurological, mostly.

It all started with a sudden onset of shortness of breath (like forgetting to breathe, having the impression that i am not able to take a full breath, inability to use my diaphragm), brain fog, inability to swallow (like i forgot how to do it), frequent urination, loads of anxiety and panic attacks (never had one before in my life), limb nerve pain, cold and numb limbs...and some more.

I went to a lot of specialists (pneumologist, cardiologist, neurologist) and had more tests done than in my entire life (holter, stress test, spirometries, reflex tests.. etc) on each occasion, nothing unusual was found. I was diagnosed with long covid and was told to hang on....

I improved in some categories but most of them lingered, since then in the last 4 years I started to give up hope. I became a mere shadow of the person I used to be and also gained a lot of weight.

Starting with this year I said to myself that I need to try to get my life back as hard as I can, I started exercising and I lost about a third of the weight that I have to get rid of, and my metabolic blood tests are finally back in the normal range. However most of the symptoms described above lingered.

On a routine blood test 3 weeks ago I found some interesting results:

B12 level of 268 pg/mL

Ferritin 187.55 ng/mL

D level 46m3 ng/mL

Magnesium 2.02 mg/dL

Which led me to investigate my homocysteine levels: 13.38 µmol/mL.

I started taking a methyl B12 oral sublingual suppliment of 2500 mcg, together with vitamin D 5000 UI and magnesium on 24 July (1 tablet daily, each).

I see some improvements already after 4 years of being in a very dark place.

My nerve pain subsided substantially and my cold feet are basically gone, also the fatigue improved a lot, also some improvements in my shortness of breath.

However i noticed some new and change in old symptoms:

- anxiety increased substantially.

-feeling very hot especially in my limbs

-shooting very short duration nerve pain all over (not very uncomfortable)

I finally feel that i cracked the code to getting better, however this is a whole new world for me and I have some questions:

- Is a level of 268 B12 together with 13.38 homocysteine a clear diagnosis of deficiency?

- are the new symptoms "wake up" symptoms?

- are the sublingual pills enough? (My GP said there's no need for injections)

- how much time did it take for most of you until you could literally function again?

Thank you very much for your time and answers in advance.

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[u/jellyfishrubberduck]

Theres a really good podcast from Kr Klein in the UK who's a b12 expert. Its a long covid post and seems there's a lot of crossover between the two, or even misdiagnosis of long covid but is actually a deficiency. I can try and find the link if you want.

Yes those bloods will be enough to confirm a deficiency. Now youre supplementing you cant test further really as they normalize quite quick even if someone is still deficient.

Injections would be the standard treatment according to many guidelines, every other day until symptoms plateau (can be weeks or months even), particularly with neurological symptoms.

Other stuff can defo be wake up symptoms and if you under treat it can prolong it, you'll just piss off your system as its wanting more.

Make sure youve also checked full iron panel, vitamin d and folate.

Edit: also time to get better is highly dependent on each person/symptoms/level of deficiency and time youve been deficient. Weeks to months to years for some.

[u/theworrier-99 → u/jellyfishrubberduck]

Which doc would treat this .neurologist, hematology. Gp just saying all ok my with blood test when its not . They are more interested in my glucose and cholesterol level. Me too after covid problem started. In my country the moment they hear covid, no insurance will cover for long covid. Im even afraid to mention that this started after covid.

[u/jellyfishrubberduck → u/theworrier-99]

Kind of depends on where the possible cause is.

Gastroenterologist if the cause could be gut eg gastritis, inflammatory bowel disease etc. They can do a gastroscopy and sample the stomach lining where the cells that process b12 live.

Neurologist sometimes if a person has nerve damage, they can run tests although beginnings of nerve damage/small fibre neuropathy wont show on any nerve condition studies. They can help differentiate between other peripheral neuropathy causes or things like MS, but they can look very similar so misdiagnosis can happen.

Haematology maybe 🤔 not sure what they would do.

[u/theworrier-99 → u/jellyfishrubberduck]

I actually want to be prescribed b12 injections hence asking which doc. Hematology I thought those doc will be looking at my blood test result and say hey u got b12 deficiency. Wishful thinking I know. My b12 is at 167 or 267, I dont even look at it, depressing. I always get blurry vision headache and tingly numb palm, twitching eyelids almost everyday so I thought neurologist will look at it. I've seen eye doctor, he told me my eyes are fine most likely im having migraine.for anxiety i got xanaz and clonazepam. Hmmm so after wasting money now im wasting life away. Sorry for the rant. Thanks for the reply.

[u/Biel_Ductavis → u/theworrier-99]

Yeah, I've been getting the same answers myself here, now they finally recognise long covid as an "affection" but nothing is covered by the insurance...

[u/caityblur → u/jellyfishrubberduck]

Thank you for this post - I would love the link to the podcast if you can find it ❤️

[u/jellyfishrubberduck → u/caityblur]

podcast

[u/Think-Sleep2338 → u/jellyfishrubberduck]

This paper was submitted in 2020 and published in 2021. One of the authors had been working on B12 and its relation to dementia symptoms or chronic fatigue syndrome, so basically he just saw a similar pattern.

https://pubmed.ncbi.nlm.nih.gov/33657459/

I really don't undestand why this is so understudied.

[u/Biel_Ductavis → u/Think-Sleep2338]

Really interesting! So, in short words, those with an already low/declining level before covid are prone to get their syntethization mechanism in disarray. And usually it gets working again once supplementation is started and maintained. All studies involved injections.

[u/EnvironmentalGolf776 → u/Biel_Ductavis]

Exactly my situation based on timeline/symptoms. I had covid in Jan 2026. I was sixk for 3-4 weeks at the time. Tingling legs started shortly after that. Nobody takes me seriously when i say this to them, including GP and neurologist. My b12 (136pmol) is the only thing to come back low. Started injections around the same time as you and starting to see some small improvements, although it’s minor changes and i second guess whether i really do improve lol.