So I was doing some whining about how I seem to have gotten a lot worse the past few months in Lyme Disease UK’s discussion group (plug plug), and with help from several others and my decrepit brain slowly turning it’s cogs, it all suddenly dawned on me. I’m B12 deficient.
I’ve had worsening air hunger to the point of having to keep the window open at all times again, gulping like a demented fish and feeling like I’ve got a plastic bag on my head with the oxygen being sucked out. I’ve never actually suffocated before, but this feels a lot like it and it’s rather unpleasant.
I’ve had increased exhaustion, muscle aches and ‘post exertional malaise’, now my disapproval of the term ‘malaise’ aside, it was really becoming a problem. The only thing keeping me from being completely housebound again was my denial. I would go out, struggle through things and then suffer when I got back. And I can tell you, it was suffering. I felt poisoned and nauseous and my muscles HURT, it hurt to move, it hurt to stay still, I was writhing about for most of the night feeling like my body was trying to kill me.
I also have felt increasingly depressed, for no reason I could really pinpoint. I found things to complain about of course but being depressed isn’t really my natural modus operandi these days.
The more I read about B12 deficiency the more it all made sense, it was a lightbulb moment and metaphorical light shone down from the heavens onto me producing a moment of clarity and an incredible D’OH feeling. I’ve been taking minocycline for a few months and what no one told me (thanks docs!) was that it prevents the absorption of quite a few nutrients, B12 being one of them. I was meant to take a multi vitamin but taking 1 a day when you’re also taking stuff that robs you of vitamins doesn’t really cut it.
So I’ve been researching like crazy and although I’m no chemist and don’t really understand it all, the general gist I’ve learned is fascinating. Listen up people, I’m about to give a chemistry lesson for chemistry dunces.
Tetracyclines are nutrient robbers, somehow. So you don’t absorb what you’re meant to from food and get deficient. Now people with chronic Lyme all tend to have the same genetic mutations (I don’t like to call them defects, we’re not defective, we’re evolved and special dammit.) which makes you really bad at detoxing out the crap that’s bad for you. I.e toxins from infections, pesticides, chemicals in food yadda yadda. Guess what else helps you detox? Certain B vitamins. Are you getting the shining light moment yet? What do you get when you cross a B deficiency with someone who desperately needs all the B vits they can get to detox? EXTRA BAD DETOXING, I would assume. *shrug* Which explains the poison feeling and muscle pain. The air hunger could be from a kind of anaemia associated with B12 and/or iron deficiency. Basically when you feel poisoned, you probably are and when you feel starved of oxygen you probably are.
This is about as scientifically accurate as a 5 year olds explanation of, well, anything, so don’t take it as gospel, ask your doctor if you want to hear the proper stuff.
The next thing I did was to chomp down loads of B vitamins. I took 3 a day for a couple of days. I woke up feeling like a new person, I went shopping and survived crazily well and the PEM wasn’t nearly as bad as it’s been lately. The depression has miraculously lifted and I feel like me again!
I’m now on a mission to pack in as many vitamins as possible, also iron. I ate liver for the first time and it was surprisingly ok. I wouldn’t want it all the time but it’s not bad, and if you’re thinking about giving it a go, do it. I’ve ingested a hell of a lot worse in aid of my health, trust me…. (Sauerkraut anyone? barf.)
I was considering getting my GP to do a B12 and ferritin test before I went on vitamin mission but after reading about the complexities of testing for it and knowing how the NHS will take the shortcut and only test serum B12 at best and just a full blood count for anaemia at worse, I’ve decided to go ahead and try to make myself feel better ASAP, if she wants to do the test then she can but by then I’m hoping my levels will be back to normal.
You don’t have to be taking tetracycline anti biotics to get a B12 deficiency. It can be caused by loads of other meds, including proton pump inhibitors like omeprazole, and also from gut absorption problems. Some people just don’t absorb what they eat. It doesn’t always show up in normal blood tests, especially if your red blood cell count is normal. It doesn’t always cause anaemia.
The symptoms of B12 deficiency – exhaustion, neuropathy, neuropsychiatric conditions, tachycardia, can range from general tiredness all the way to Multiple Sclerosis and it also overlaps a lot with Lyme disease. Despite all the medical knowledge I’ve amassed over the past few years, I hadn’t come across something so simple causing so many problems and so many illnesses that is so poorly understand by most doctors.
If you suspect a B12 deficiency, watch this video, it explains it far more than I ever could as it’s hugely complex. Then read up about the testing so you know which tests you need when you go to the GP. I feel so lucky that my brush with B12 was just that, a slight annoyance due to a med I was taking. For some people it can be life changing and lead to severe psychiatric problems and multiple sclerosis, it’s probably also a large contributing factor to ME/CFS in the absence of tick borne infection.
Moral of the story? Supplements aren’t there to piss you off and bankrupt you. (I was only taking the minimum every 3 days or so cos I’m naughty like that). Take the pills!! Lots of them. Frequently. With gay abandon!