Health, Healing & Hummingbirds

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My B12 deficiency treatment diary

Before beginning treatment I'd had symptoms of B12 deficiency (on top of the symptoms of my 18 year duration primary disease) for about 18 months.

B12 deficiency symptoms began around March 2012
 

The first 30 days...

Day 1: Sunday October 27th 2013. 5 mg B12 sublinguals. (3 mg as methylcobalamin and 2 mg as hydroxocobalamin.)

I feel like I have taken knockout drops. I feel dizzy and spacey and sort of semi-conscious yet mentally a bit super-charged all at the same time. All light, noise and movement is very jarring to me and painful and too intense. It's a very hard to explain as it feels like nothing else. 

 

The reaction is very handle-able though and not severe, although I can't really do much all day except rest. I can feel it doing me good. I feel an unmistakeable sense of wellness along with the sleepiness and strangeness. In 3 or so hours when I feel the main effect from a sublingual wear off I take another one and so I'm able to keep the effect at a constant manageable level.

 

Day 2: 5 mg B12 sublinguals. (3 mg as methylcobalamin and 2 mg as hydroxocobalamin.)

Same as the day before. I still feel like I have taken knockout drops. The effect may even be a bit stronger today. The breathlessness I had previously and quite severely  the day before day one of B12 treatment is GONE. I'm so relieved. I can feel some weird new sensations in my arms, sort of a very soft pressure.

 

Day 3: 10 mg B12 sublinguals. (3 mg as methylcobalamin and 2 mg as hydroxocobalamin.)

Still feel like I have taken knockout drops and am quite spacey. My arms look completely different! They are at least 20% smaller than they were and they are now back to actually being arm shaped. My face and stomach and legs are much less bloated too. I've lost 2 kg of excess lymph fluid in 3 days. It feels wonderful. I've had this excess lymph fluid for 8 months, and so much of it is now gone. I can bend all my limbs properly again and they no longer feel under a lot of pressure. I could cry. The relief is ENORMOUS.

 

My whole upper body and upper arms feel so different as well. I feel like someone has been squeezing my whole upper body for months but has suddenly stopped. I have far greater neck and shoulder movement. It is only now all this upper body pressure is gone that I realise how bad it was.

 

The swollen bright blue painful veins visible on my upper body for months now look normal, or very close to it. They no longer hurt at all. The shooting and burning arm and leg pains have also stopped! They are gone now.

 

Day 4: 12 mg B12 sublinguals. (8 mg as methylcobalamin and 4 mg as hydroxocobalamin.)

Still feeling the same start-up reactions at the same manageable but somewhat intense level. I'm going by how I feel in working out how to time my sublingual dosages. I'm trying to maintain a constant level of reaction and each day so far my tolerance goes up a little bit more. I'm trying to take enough B12 that I can feel it going to work, yet not take so much that the reaction is too much. Still also not sleeping very well. Went weirdly red and blotchy all over today for an hour or so.

 

Day 5: 8 mg B12 sublinguals plus 0.5 mg hydroxocobalamin given IM. (6 mg as methylcobalamin and 2 mg as hydroxocobalamin.)

Same start-up reaction but with a headache. I can also feel some weird new sensations in my groin and stomach areas. Feels like those areas are being worked on now too and all the nerves are being repaired and working out how to work normally again. The burning pain in those areas has stopped now. The injection gives me quite a big start-up reaction, so I'm excited about all the extra good it'll do. I feel a bit hot after the injection and my heart feels a bit strange. I feel like the injection has worn off about 4 hours later so I resume taking the sublinguals at that time.

 

Day 6: 18 mg B12 sublinguals. (14 mg as methylcobalamin and 4 mg as hydroxocobalamin.)

Same start-up reaction but with a headache. Woke up very cold and was unable to get warm for hours. Feel noticeably brighter mentally today, and less mentally foggy. It's maybe 20% better. My eyesight seems to sharp and clear as well. Everything is in sharp focus and I can open my eyes fully like I haven't been well enough to do for months.

 

Feeling lots of strange sensations in my groin, arm, kidney, bladder and stomach areas. My stomach kind of hurts in an unusual way. The weird feelings in my legs are very intense and varied and include short bursts of light numbness and tingling in areas I've never had that before. Bladder symptoms are unchanged.

 

Day 7: 12 mg B12 sublinguals plus 0.5 mg hydroxocobalamin given IM. (10 mg as methylcobalamin and 2 mg as hydroxocobalamin.)

Same start-up reaction but with a more severe headache. Still not sleeping well but felt a lot less noise sensitive and fragile when I got up today. This time the injection caused a fairly unpleasant and rare reaction. I had a pounding heart, heart pain, dizziness and was so hot I was soon covered in sweat. I couldn't move even to reach for a glass of water for an hour afterward. Not fun but I felt okay about 3 hours later so it wasn't that bad. I'm not sure if it was a reaction to having such a high dose of B12 at once or a problem with the preservatives in the product. It's difficult for now to tell which it is. Today it is mostly my calves and lower back.kidney/bladder areas that feel strange sensations running through them.

 

Day 8: 25 mg B12 sublinguals. (20 mg as methylcobalamin, 3 mg as hydroxocobalamin and 2 mg as adenosylcobalamin B12)

Slightly less of a start-up reaction with a severe headache. Had an amazing feeling of 'brightness' after taking most of my sublingual B12 for the day. It was amazing. The knockout drops effect was totally gone and I just felt great. First time this has happened. It only lasted a little while and the next dose I took I was back to the usual sleepiness reaction from it, but it was definitely less severe.

 

My arms look even better again I think, but I can't be sure. But then later in the day a family member tells me that my whole face looks different and much more defined today suddenly. I have a look in the mirror and I agree. I haven't weighed myself again yet but I've definitely lost more excess lymph fluid which is just wonderful. My face doesn't look so puffy and doughy as it did. I feel I look like myself again.

 

Felt strange leg sensations all day. It feels like my arms are kind of 'finished' but my legs are still being worked on. My legs were more severely affected than my arms ever were so it makes sense it'd take a bit longer. My arms feel slightly weak still, but otherwise seem back to normal. No more arm bloating, shooting arm pain or painful veins in my upper body and upper arms.

 

Day 9: 30 mg B12 sublinguals. (25 mg as methylcobalamin, 3 mg as hydroxocobalamin and 2 mg as adenosylcobalamin B12)

Less of a start-up reaction with a very severe headache, pain behind the eyes and neck pain. Sleep was much better finally. I'm not sure if I've overdone it on the computer (researching B12!) the last few days and have an M.E. overexertion headache or if the neck and head pain is a B12 reaction. I like to think it's a sign of my brain being fixed in some way by the B12 but who knows. Had a few moments of mental 'brightness' after a few sublingual doses but they didn't last very long. Nothing but resting all day again.

 

My stomach is still a little bit bloated at times, although much less than it was. Finally I can start wearing all my old clothes again! I've had to stick to only a few very loose-around-the-waist pairs of pants etc. the last few months due to my massive stomach bloating. My stomach was huge and wearing anything tight around the stomach hurt a lot. My stomach area now feels a lot better and not so tight and rigid. I have normal movement back. I can do deep breathing exercises again as part of my daily meditation. This had become impossible in the last few months. Everything was so locked up an immovable. Digestion is also much improved and food isn't sitting painfully in the stomach for hours undigested, as it did for the last month or two.

 

Still too zonked to do much or spend time doing anything mentally complicated but I definitely feel more normal today.

 

The bladder issues are noticeably different today. Today I have maybe a 20% improvement in bladder symptoms! I have better function and far more normal sensations. I'd almost forgotten what that felt like. The whole area just feels more normal (I don't want to go into too much detail though). Very, very happy and relieved. I have a long way to go and am desperate to get there yesterday but this is a promising start especially as it has happened so quickly after beginning treatment.

 

Day 10: Tuesday November 5th 2013. 30 mg B12 sublinguals. (25 mg as methylcobalamin, 3 mg as hydroxocobalamin and 2 mg as adenosylcobalamin B12)

Much less of a start-up reaction and a mild headache. Had a far more normal and deeper sleep, was only awake for an hour or so in the night. Woke at 9am feeling quite good. My whole face hurts for some reason. I feel like I have been punched in the face. The roots of my teeth hurt. Had a half hour 'brightness' reaction at the end of the day. It felt fantastic, I can't wait until some variation of this happens all the time instead of the knockout drops thing. My vision is amazingly clear still too.

 

More strange leg sensations all day. This time it isn't just weird sensation and pressure but it is a sort of dull pain too. It's not severe and is nothing like the agonising burning pain I had pre-treatment but has lasted for hours. Lower spine also hurts with a constant dull pain and pressure. My whole leg aches as well. My bladder and kidneys feel strange today too. Lots of new healing is going on I guess.

 

Still not up to much but resting and letting the B12 do its thing. Very happy to do so. I can't believe how much has changed in just over a week. The body can do amazing things when given all the raw materials it needs. I can't wait for the rest of it.

 

Day 11: 35 mg B12 sublinguals. (30 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Much less of a start-up reaction and a mild headache. Slept all the way through the night finally. Tried to do some typing and computer work today but wasn't really up to it, so back to resting. My arms were definitely a bit stronger and able to type more before hurting though. Neck glands are painful. Lots of leg pain and strange sensations including a soft tingling in my feet on and off. Nausea and some gut issues.

 

Day 12: 25 mg B12 sublinguals. (20 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Mildish start-up reaction and a mild headache. Lots of leg pain and strange sensations including a soft tingling in my feet on and off. I feel like I can breathe more easily. I'm doing well drinking just 8 glasses of water a day again I notice, and no longer need the 12 glasses daily (just under 5 litres!) I had to have when the kidney/lymph issues were at their worst. For the first time in many months I'm able to take my usual full dose of magnesium without it causing the B12 deficiency bladder issues to become much worse.

 

Day 13: 28 mg B12 sublinguals. (20 mg as methylcobalamin, 5 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Severe start-up reaction beginning mid-afternoon and a moderate headache. Legs are painful. Before mid-afternoon I felt really great for about 3 hours and was able to do a few small fun tasks. Heart is painful and thumping a bit after my slightly-too-high mid-afternoon B12 dose.

 

Day 14: 10 mg B12 sublinguals. (5 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Huge headache, lots of leg and hip pain and nausea, and very painful glands in my neck not just on the sides but under my jaw now as well. Healing reaction is very severe although of course all gains got so far are still there. I'm unable to get my own lunch and have to ask for help. Need to take a break from high dose B12 today. Felt fine by late afternoon though and so took a little B12 just before bed.

 

Day 15: 20 mg B12 sublinguals. (15 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Huge headache, lots of leg and hip pain and painful glands in my neck. Headache is too big to get too big of a B12 reaction going for first half of day anyway. Feels like I have a knife in each eye - nice!

 

Day 16: 25 mg B12 sublinguals. (20 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 17: 15 mg B12 sublinguals. (10 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Mild headache. Feel good.

 

Day 18: 25 mg B12 sublinguals. (20 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Legs really hurt and ache.

 

Day 19: 20 mg B12 sublinguals. (15 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 20: Friday November 15th 2013. 25 mg B12 sublinguals. (20 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 21: 40 mg B12 sublinguals. (30 mg as methylcobalamin, 7 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Mild headache only. Feel really good though head is still a bit fuzzy. Had a few days of clearer thinking but it's gone again. Cough is back suddenly, just for today. Weird. Legs hurt.

 

Day 22: 55 mg B12 sublinguals. (50 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Mild startup symptoms only - until I took the last 5 mg at 11 pm which gave me a slightly overstimulated effect and mild heart issues. I took 5 mg too much. I'm trying to take as much B12 as I can each day without causing the overstimulated effect or too much of a drowsy effect. My tolerance is rising week by week but may now have stabilised. Legs still hurt but about half as much as last week.

 

Day 23: 40 mg B12 sublinguals. (35 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

I didn't think much of it when I read that dandruff can be a symptom of B12 deficiency, but I noticed today that the annoying dandruff-esque scalp issue I've had for at least 2 or 3 years is now gone. May not last though, who knows.

 

Day 24: 35 mg B12 sublinguals. (30 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Mild headache still. Feel really good though head is still a bit fuzzy. Had some mild unusual sensations in my legs including some tingling in my feet once today, but have much less tingling this week as compared to last week.

 

Day 25: 40 mg B12 sublinguals. (35 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Didn't sleep until 5 am (too much computer time in the evening, unfortunately) and then woke at 11 am. The methylcobalamin effect on normalising circadian rhythms seems to not be as pronounced as it was. It's now possible to sleep a bit later. The first two weeks or so of high-dose B12 treatment waking at 6.30 - 7.30 am or so was impossible to avoid no matter what. Lots of calf pain and aching today.

 

Day 26: 25 mg B12 sublinguals. (20 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Digestion is still not good and is still B12 deficiency affected. Digestion is not great despite appropriate diet and digestive supports. Quite bloated just in the stomach area still. Brain-power and energy are still not back either. Haven't had a leg tingle for a while now.

 

Day 27 Friday 22nd: 40 mg B12 sublinguals. (35 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 28 Saturday 23rd: 40 mg B12 sublinguals. (35 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Leg pain is better.

 

Day 29 Sunday 24th: 30 mg B12 sublinguals. (25 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 30 Monday 25th: 40 mg B12 sublinguals. (35 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Occasional leg tingles; very mild fluttery ones that last about 3 seconds. Headache may finally be gone.

The next 70 days...

Day 31 Tuesday 26th: 0.1 mg B12 as methylcobalamin given IM (as an intramuscular injection).

Feel not much from my first methylcobalamin injection but also no rashes or itching or other bad reactions which is a relief.

 

Day 32 Wednesday 27th: 0.3 mg B12 as methylcobalamin given IM.

Had a B12 induced nap after lunch. Felt groggy and neurologically ‘wrong’ for hours afterwards.

 

Had an injection about 7 pm.

 

The injection is again virtually painless all I can feel is a mild pressure on my arm. After about a minute I don’t feel anything from it at all. There is no bruising. It’s far less painful and annoying than your average mosquito bite. Not a big deal at all and probably a lot less annoying and effort-y than carefully sucking on 8 sublingual tablets for half an hour each in a day!

 

Started feeling wonderful about 9 pm, just really well and slightly floaty. Passed out in the bath for about 45 minutes at 10 pm. Just before I passed out I felt a bit breathless and had a bit of unpleasant heart pressure for 5 or 10 minutes and then got extremely drowsy so that it was impossible for me to get out of the bath before passing out. Not fun but not too bad. Nowhere near as bad as the heart issues caused by the hydroxocobalamin injection a few weeks ago where I couldn’t move for an hour and felt quite bad.

 

Day 33 Thursday 28th: 40 mg B12 sublinguals. (35 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Lots of little leg tingles all day today and yesterday. Had a B12 induced nap in the afternoon but woke up feeling not too groggy afterwards. Drowsy all day.

 

Day 34 Friday 29th: 30 mg B12 sublinguals. (25 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 35 Saturday 30th: 0.4 mg B12 as methylcobalamin given IM.

The first 0.2 mg injection goes well so I have a second one later in the evening. Feel fine just a bit drowsy.  Cough has come back.

 

Day 36 Sunday 1st December: 0.3 mg B12 as methylcobalamin given IM.

I have a bizarre new minor neurological symptom. My little toe on my left foot feels constantly like something is stuck to it. I keep going to flick it off but there is nothing there. I have never had anything like it but am assuming it’s some sort of nerve healing and recalibration going on that’s doing me good!

 

Day 37 Monday 2nd: 0.3 mg B12 as methylcobalamin given IM.

Woke up feeling just wonderful, almost euphoric. Infused with a huge amount of calm happiness and physical wellbeing. Just like the day before I woke up right after having a very long and detailed dream that seemed to last about an hour. One of the most happy, fun and positive dreams I’ve ever had.

 

I have the injection at 11 am and by 12 I am walking around like a zombie. Can’t raise my feet to walk I’m so ridiculously drowsy. Even my teeth need a nap. I sleep for 2 hours and wake at 4 pm feeling good for about half an hour and then the drowsiness returns and stays all night. I do nothing all day but rest and sleep. Weird toe symptom seems to be gone now.

 

Day 38 Tuesday 3rd: 0.2 mg B12 as methylcobalamin given IM.

Woke up feeling quite drowsy and having had another unusual long, positive and detailed dream. Still so drowsy from the B12 of the day before so I don’t have a B12 injection in the morning as planned.

 

Over the last 3 or 4 days my cough has come back and so has the back of thigh and calf pain, some of the UTI-like bladder symptoms, arms and leg tingles, lower back pain, and also early waking and very broken sleep. I also can’t think again at all and am not good for doing anything. No headache though. It seems like switching to the IM B12 has really boosted the healing rate right back up again. I can really feel things happening again. Wonderful!


Day 39 Wednesday 4th: 40 mg B12 sublinguals. (35 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 40 Thursday 5th: 60 mg B12 sublinguals. (55 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Tried to see if taking lots of methylcobalamin sublinguals over a short time period would give a similar effect to having an injection. Had 40 mg between 8 and 11.45 am. Felt great for about half an hour, then very sleepy for an hour but it was all over by about 3 pm. Much milder effect than an injection, even taken in a shorter time period.

 

I worked out today that to get a similar effect to taking 0.3 mg of methylcobalamin IM I need to take at least 50 mg sublingually. If IM methylcobalamin is 90% absorbed, that gives a figure of 0.27 mg net. If I were absorbing 1% of the 50 mg sublingual methylcobalamin dose that'd be 0.5 mg net. So by my rough calculations that means I'm absorbing less than 1% of the sublingual methylcobalamin. I had read to expect maybe a 10 to 20% absorption rate. For me this figure is way off, though of course that has nothing much to do with how accurate it is for the average patient. It seems I am a very poor methylcobalamin and/or sublingual absorber in some way, perhaps. Maybe I need to look into B12 transport defects?

 

I have just ordered some liposomal methylcobalamin. It'll be very interesting to see what effect that has at a 5 mg dose. If it is absorbed at a rate of over 90% like liposomal vitamin C is then it may work out a lot cheaper than sublinguals as I should need less than one 5 mg dose a day.

 

Day 41 Friday 6th: 0.2 mg B12 as methylcobalamin given IM.

Woke up feeling great again.

 

Day 42 Saturday 7th: 0.2 mg B12 as methylcobalamin given IM.

No pass outs but still just can't get anything done. B12 zombified as usual.

 

Day 43 Sunday 8th: 0.25 mg B12 as methylcobalamin given IM.

Passed out in the bath again. Hate that.

 

Day 44 Monday 9th: 0.3 mg B12 as methylcobalamin given IM.

2 pm B12 nap.

 

Day 45 Tuesday 10th: 0.2 mg B12 as methylcobalamin given IM.

 

Day 46 Wednesday 11th: 0.2 mg B12 as methylcobalamin given IM.

Needed the 2 pm pass out/B12 nap but house was too noisy for it, so felt extra awful and unable to do anything all day.

 

Day 47 Thursday 12th: 30 mg B12 sublinguals. (25 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

2 pm B12 nap.

 

Day 48 Friday 13th: 10 mg B12 sublinguals. (5 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Forgot to take much B12 today. Stomach bug.

 

Day 49 Saturday 14th: 20 mg B12 sublinguals. (15 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 50 Sunday 15th: 30 mg B12 sublinguals. (25 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Made it to 50 days!

 

Day 51 Monday 16th: 0.3 mg B12 as methylcobalamin given IM.

No nap today.

 

Day 52 Tuesday 17th: 0.25 mg B12 as methylcobalamin given IM.

 

Day 53 Wednesday 18th: 0.3 mg B12 as methylcobalamin given IM.

 

Day 54 Thursday 19th: 0.3 mg B12 as methylcobalamin given IM.

 

Day 55 Friday 20th: No B12 today.

Very drowsy. 2 pm B12 nap.

 

Day 56 Saturday 21st: 10 mg B12 sublinguals. (10 mg as methylcobalamin)

Still very drowsy.

 

Day 57 Sunday 22nd: 0.2 mg B12 as methylcobalamin given IM.

Digestion is still nowhere as good as it was 6 or more months ago, probably due to low B12. Have some abdominal bloating still sometimes, even with HCl and enzymes. Looking forward to more healing in this area in the next few months, hopefully. Still a ways to go in this area.

 

Day 58 Monday 23rd: 40 mg B12 sublinguals. (40 mg as methylcobalamin)

Sleeping pretty well. Some night waking but usually for less than 30 minutes. Waking around 9 am. Stomach bug almost gone. Lower back is painful and feels strange. B12 healing reaction I think.

 

Day 59 Tuesday 24th: No B12 today.

Very drowsy. Had a bit of a healing reaction with the bladder issues the same as I did previously just before they became much improved. It seems more healing work is being done there I guess. This incident made me realise that the bladder and kidney issues had been completely gone and I hadn't thought about them even once in at least 2 or maybe 3 weeks! Everything has been completely normal. Very happy with that! Is still some healing to go of course as I think symptoms may still occur if I'm under a lot of physical stress possibly, or forget to drink enough water. Not 100% healed with bladder and kidney issues yet but seem to be quite close to it and still improving.

 

Day 60 Wednesday 25th: 5 mg B12 sublinguals. (5 mg as methylcobalamin)

Still very B12 drowsy so kept dose small today.

 

Day 61 Thursday 26th: 20 mg B12 sublinguals. (20 mg as methylcobalamin)

 

Day 62 Friday 27th: 0.2 mg B12 as methylcobalamin given IM

Felt a little faint and breathless after the injection. That has been happening a bit lately. I'm fine again after an hour or so though, and just drowsy.

 

Day 63 Saturday 28th: 0.2 mg B12 as methylcobalamin given IM plus 1.2 mg of liposomal B12 as methylcobalamin.
It seems the liposomal B12 is nowhere near as well absorbed as the injected, as I was able to have a dose well over 0.3 mg with nothing but a bit of drowsiness. I raised the dose slowly throughout the day to make sure it wasn't more than I could handle.

 

Day 64 Sunday 29th: 0.3 mg B12 as methylcobalamin given IM.

 

Day 65 Monday 30th: 0.3 mg B12 as methylcobalamin given IM plus 7.5 mg of liposomal B12 as methylcobalamin.

Still not sure how well absorbed the liposomal is compared to the other forms. It's hard to tell yet due to there being so many other variables. My guess so far is that 5 mg of liposomal B12 *may* have the same effect as 20 mg taken sublingually. Possibly.

 

Day 66 Tuesday 31st: 25 mg of liposomal B12 as methylcobalamin.

Very drowsy after the first few doses. Expected a bigger effect. Legs are very tingly today.

 

Day 67 Wednesday 1st January 2014: 40 mg B12 sublinguals. (40 mg as methylcobalamin) 

Had an unexpected B12 nap at 11 am after having 20 mg over a few hours.

 

Day 68 Thursday 2nd: 60 mg B12 sublinguals. (60 mg as methylcobalamin) 

Very tingly legs and also abdomen.

 

Day 69 Friday 3rd: 40 mg B12 sublinguals. (40 mg as methylcobalamin) 

Had an unexpected B12 nap at 12 am after having 20 mg over a few hours. Had a nap at 10 pm after having 10 mg too. Not very drowsy but very nap-prone lately. Lots of leg tingling still and a bit of coughing. Finally starting to feel a bit stronger generally.


Day 70 Saturday 4th: 60 mg B12 sublinguals. (60 mg as methylcobalamin) 

Methylfolate supplementation is now up to 3.2 mg daily (from 1.6 mg daily prior to high dose B12 treatment commencing).

 

Day 71 Sunday 5th: No B12.

Very drowsy and lots of B12 napping. Cumulate effect from so much sublingual B12 the last 4 days.

 

Day 72 Monday 6th: No B12.

 

Day 73 Tuesday 7th: 10 mg B12 sublinguals. (10 mg as methylcobalamin) 

 

Day 74 Wednesday 8th: 40 mg B12 sublinguals. (40 mg as methylcobalamin) 

 

Day 75 Thursday 9th: 15 mg B12 sublinguals. (10 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

I keep forgetting to take the other forms of B12. Whoops.

 

Day 76 Friday 10th: No B12.

Managed to walk all the way to my mailbox and out onto the footpath a bit for the very first time since I moved into this house almost a decade ago. Wonderful. This technically counts as being no longer housebound 100%! I have been 100% housebound since mid-2005. 


The low B12 and low iron symptoms disappearing mean that the gains I have made to my primary M.E. disease over the past two years are no longer being masked by those additional new-onset deficiency symptoms. I had some mild low-iron-related breathlessness at the end of the walk but was completely recovered from that in less than 2 hours. No other symptoms and no heart or blood pressure issues or purple feet from it AT ALL! It was easy.

 

Day 77 Saturday 11th: 0.2 mg B12 as methylcobalamin given IM.

 

Day 78 Sunday 12th: 0.3 mg B12 as methylcobalamin given IM.

 

Day 79 Monday 13th: 10 mg B12 sublinguals. (5 mg as methylcobalamin, 2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 80 Tuesday 14th: 0.3 mg B12 as methylcobalamin given IM and 10 mg B12 sublinguals. (5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

 

Day 81 Wednesday 15th: 0.3 mg B12 as methylcobalamin given IM and 10 mg B12 sublinguals. (5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

 

Day 82 Thursday 16th: 20 mg B12 sublinguals. (10 mg as methylcobalamin, 5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

 

Day 83 Friday 17th: 20 mg B12 sublinguals. (10 mg as methylcobalamin, 5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

 

Day 84 Saturday 18th: 0.4 mg B12 as methylcobalamin given IM and 10 mg B12 sublinguals. (5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

Too much B12. Lots of B12 naps and near-naps.

 

Day 85 Sunday 19th: 10 mg B12 sublinguals. (5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

Still very very drowsy.

 

Day 86 Monday 20th: 10 mg B12 sublinguals. (5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

 

Day 87 Tuesday 21st: 0.3 mg B12 as methylcobalamin given IM and 20 mg B12 sublinguals. (10 mg as methylcobalamin, 5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)
Taking a whole adenosylcobalamin sublingual (around 10 mg strength) has always made me feel a bit agitated and overstimulated. I've been taking half a sublingual tablet for a while now and I notice some subtle over-stimulation symptoms and no benefit so am going to stop taking it for a while and then go back to taking a quarter of a tablet. It seems like I don't need more than a small dose of that form of B12.

 

Day 88 Wednesday 22nd: 10 mg B12 sublinguals. (10 mg as methylcobalamin)

 

Day 89 Thursday 23rd: 10 mg B12 sublinguals. (10 mg as methylcobalamin)

 

Day 90 Friday 24th: 20 mg B12 sublinguals. (20 mg as methylcobalamin)

 

Day 91 Saturday 25th: 10 mg B12 sublinguals. (10 mg as methylcobalamin)

Lots of leg pain the last week or so. Mild sensations of pressure on the kidneys too.

Day 92 Sunday 26th: 0.3 mg B12 as methylcobalamin given IM and 10 mg B12 sublinguals. (10 mg as adenosylcobalamin B12)

I mistook an adenosylcobalamin sublingual for a methylcobalamin sublingual and had a whole one. The humid weather made the tablet a different colour. Whoops.

 

Day 93 Monday 27th: 20 mg B12 sublinguals. (15 mg as methylcobalamin and 5 mg as hydroxocobalamin)

 

Day 94 Tuesday 28st: 0.3 mg B12 as methylcobalamin given IM and 10 mg B12 sublinguals. (5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)
 

Day 95 Wednesday 29th: No B12

 

Day 96 Thursday 30th: 0.3 mg B12 as methylcobalamin given IM and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 97 Friday 31st: 0.3 mg B12 as methylcobalamin given SC (subcutaneous) and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Gave myself my first ever subcutaneous B12 injection today. My technique is not great and needs work but I got the job done! Will do all my own injections now.

 

Day 98 Saturday 1st February 2014: 0.3 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Lots of numbness and strange tingling sensations for a few days now affecting my pinky finger and ring finger on both hands.

 

Day 99 Sunday 2nd: 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 100 Monday 3rd: 0.3 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

I've felt strangely bright mentally since Friday, it's really great. Still drowsy from the B12 reaction but the huge need for naps now and then is combined with some mental clarity - between naps at least.

 

I also haven't had any bladder issues at all, since the last time I mentioned a one-off mild issue here which was some weeks ago. It seems that issue is fully healed now or very close to it!

It feels like my legs still have a little way to go with healing and my kidneys as well. I'm not sure I have full leg strength back, or general strength or energy levels although that last issue could be low iron related or due to the B12 drowsiness healing effect.

 

It's hard to say how much neurological healing has yet to happen as all this B12 drowsiness makes deeper thinking and doing complex tasks not really possible at the moment. I'm resting a lot to help my body heal as much and as fast as possible. My guess is I'm at least 80% of the way there in reversing all the B12 deficiency symptoms I'd developed in the last 2 years. Not bad for just 100 days treatment. I'll be so glad when all these healing reactions are done with though too. Maybe in the next 100 days?!

Day 101 to the end of the first 6 months...

Day 101 Tuesday 4th: 0.3 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

My SC (subcutaneous injection) technique is much improved now, thankfully.

 

Day 102 Wednesday 5th: 0.3 mg B12 as methylcobalamin given SC and 10 mg B12 sublinguals. (5 mg as hydroxocobalamin and 5 mg as adenosylcobalamin B12)

 

Day 103 Thursday 6th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 104 Friday 7th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Feeling particularly good.

 

Day 105 Saturday 8th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 106 Sunday 9th: 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 107 Monday 10th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 108 Tuesday 11th: 0.5 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Can really feel the 0.1 mg difference but it's fine. Quite drowsy is all. Good stuff.

 

Day 109 Wednesday 12th: No B12.

 

Day 110 Thursday 13th: 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 111 Friday 14th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Now taking 4.2 mg of active folate daily.


Day 112 Saturday 15th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

I can feel faint tingles in my legs and little fingers at times but that seems to be about it, and those reactions are slowing down a lot now. My leg strength is so much better than it was.

 

Day 113 Sunday 16th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 114 Monday 17th: No B12.

 

Day 115 Tuesday 18th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 116 Wednesday 19th: 0.3 mg B12 as methylcobalamin given SC.

 

Day 117 Thursday 20th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 118 Friday 21st: 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 119 to 125 Saturday 22nd to Friday the 28th: 0.4 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

 

Day 126 to 132 March 1st to 7th: 0.5 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

I am now tolerating 0.5 mg injections very well, with no issues. Finally. I'm not sure if I need to go any higher now? 0.5 mg may be enough of a daily dose for the next 6 months or so, or until obvious healing signs stop or I'm all finished with healing. I'll probably take the injectable B12 two or more times a week for 6-12 months at least. I may even keep it up long-term. Will have to wait and see how I go with it all. I'm open to long-term injections though if they help and I need them, as they aren't that difficult.

 

Day 133 March 8th: 0.5 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)

Thought I had the flu yesterday as I had a weird cough for an hour this morning and that sort of cough-y flu was going around. But I've realised it's the B12 deficiency healing symptoms starting up again suddenly. Great news! I'm not sure if this is because I've raised my dose of B12 injections recently, or because I've just added a lot more iodine to my supplement plan due to having some symptoms of low iodine levels (and a low iodine test). Iodine is needed to repair and form myelin sheaths. I've also just started taking GLA which is also needed for myelin sheath repair, and added back a low dose lithium supplement.

 

For the last week and a bit I've had very painful calves again, softly tingling legs, a persistent cough, return of a weird seemingly B12-related scalp condition, waking several times in the night, early morning waking, passing out in the bath at night, groin/lower back pain and the return of some bladder symptoms mildly, and kidney pain mildly. I need to rest a lot again. Happy to have more healing happening and I hope it continues as long as it needs to.

 

Day 134 to 139 March 9th to 14th: 0.5 mg B12 as methylcobalamin given SC and 5 mg B12 sublinguals. (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12)


Day 140 to 186 - the end of April (about 6 months since treatment started!.): 5 mg B12 sublinguals (2 mg as hydroxocobalamin and 3 mg as adenosylcobalamin B12) and 0.5 mg B12 as methylcobalamin given SC probably 4 or 5 days out of each week, on average.

 

A bit more B12 deficiency healing has happened this week (the last week in April), I am so thrilled! Bladder and kidney nerve damage and issues caused by the nerve damage is finally all gone, along with my weird magnesium intolerance issue. These problems have been 70 or 80% gone for months now but to have the last bit of it go (or very close to it) is making me feel so thrilled and happy and relieved. Even when my body is under a lot of stress or I did certain exacerbating things the issues don't return at all as they did when healing was at the 80% level.

I also recently had the B12 coughing come back, and so it seems my throat is still doing some healing and I do notice that the weird and sometimes horrible issue I had with swallowing water sometimes, seems to now be properly gone. Fantastic.

 

I've had some issues with low potassium levels causing leg cramps I think, especially when I tried taking 0.65 mg injections for three days. I've also had leg pain due to B12 deficiency healing though so it's difficult to tell what is going on, but going back to the lower B12 dose seems to stop the issue. It's also difficult because I'm upping my iodine levels at the moment and this is having many large effects on my body, and is part hard-going and part feeling better from it already. Like the B12 I wish so much I'd started at a higher dose years earlier, because I really needed it.

I've made it to the 6 month mark! I'm planning to continue with the B12 injections for a bit longer, to make sure all the healing possible is done while I still have the chance.


May and June 2014 - The end of this diary!

I've finished off all the methylcobalamin injectables I had left and have switched to taking 25-40 mg of methylcobalmin B12 sublinguals daily, plus smaller amounts of hydroxycobalamin and adenosylcobalamin. I'm also experimenting with adding 5 mg of liposomal B12 to this daily mix. I'm aiming to take as much as I can without suffering any side effects such as drowsiness etc. at least for the next year or two.

I haven't had the leg tingling or other symptoms of B12 healing going on for a while now, which is great. They stopped while I was having the injections still. I feel like I've probably had close to the maximum B12 healing and now my job is just to take enough to maintain all these healthy changes. 

I do still get the very occasional very mild bladder and kidney issue when under huge physical stress, which is annoying. Hopefully this goes in time. It hasn't even been a year yet so I'm confident there is a good chance of that.

Taking over 40 or 50 mg of the methylcobalamin sublinguals still makes me very drowsy. I still haven't reached the point where I get the 'B12 energy burst' effect from taking it that is usual, but I hope that may come in time (as I have more issues going on than just B12 deficiency). Perhaps I still have some longer term smaller bits of B12 deficiency healing to do before that happens. I'm not sure.

B12 is wonderful stuff and I wish so much I'd known I needed a lot more of it a lot sooner. 

Best wishes to everyone reading and dealing with their own B12 deficiency issues!

My B12 story (Jodi Bassett)

B12 page 1: My symptoms, Why my B12 problem was missed for so long, Why M.E. is easily distingushed from a B12 deficiency.

B12 page 2: My B12 deficiency treatment diary.

B12 page 3: Great B12 links and books, Some comments about B12 deficiency information.
Click on the link to view the B12 B12 B12 list I made on Amazon featuring some of the most high-quality B12 supplements available. (No affiliate links, just a list.)
IMPORTANT NOTE!

Please be aware that B12 deficiency experts recommend always getting the recommended series of tests done BEFORE beginning B12 treatment. Once treatment has begun these tests are useless and the chance to have leb tests documenting your B12 deficiency is gone. Once you've had a serum B12, homocysteine and a MMA urine test done then you can start B12 later the same day and before you get your results if you like. For more information on this please see the Could it be B12? book.
Note: Please nobody change anything you are taking suddenly after reading any of this. Changes to supplements most often need to be done so so slowly with super low doses with most of the things mentioned here, or you can get really really sick! Especially if you are very ill.

They are kick arse good things but also of course can just plain kick your arse! Not fun. Please do your research first and take your time before jumping in with anything.

Other cofactors for B12 utilisation and myelin repair

Myelin sheaths can be repaired with/are made from: B12, iodine, vitamin B1, folate (vitamin B9 - from activated supplements plus from greens and berries), reduced alpha lipoid acid and omega 3s. Choline and inositol are critical (especially phosphidatyl choline from sunflower lecithin or eggs) plus the essential fatty acid GLA (e.g. from Evening Primrose Oil) and trace amounts of copper (e.g. from liver).

 

Vitamin D significantly reduces the risk of demyelination so vitamin D is important. For unknown reasons the concentration of oleic acid (a type of omega 9 oil found in olive oil, apricot kernel oil and avocados), is lower in the myelin of people with MS.  In other myelin-destroying diseases, oleic acid is used to formulate ‘Lorenzo’s oil’, which helps patients with adrenoleukodystrophy. Ensuring adequate vitamin D levels and a source of oleic acid may be helpful in repairing the myelin sheath.

 

You need adequate folate, vitamin B6 and biotin (vitamin B7) to use B12. Lithium is needed to help transport B12 and folate into the cells where it can be put to use.

 

Acetyl L Carnitine is helpful along with other mitochondrial supports such as CoQ10 and magnesium. Liposomal glutathione can also be useful.

 

Avoid grains, gluten, dairy, legumes and nightshades and processed omega 6 oils and any allergic foods to heal. Another way to help rebuild lost myelin is to submit the muscles to the ‘stress’ of daily exercise - within your individual limits and always avoiding overexertion. Rest and sleep are very important for healing too. 


A full nutritional and toxin-avoidance program will give the best results.
 



I'm taking, eating and doing all these things, and I was doing so long before I began taking high dose vitamin B12. My improvements are not the action of B12 alone, but for a long time this was the one essential ingredient my body wasn't getting enough of for sure!

I'm also taking liver capsules to boost my low iron levels. (B12 deficiency commonly causes low iron levels and my last iron test was quite low.)