The Two Sides of the Pyroluria Coin

Thursday, 2 August 2012

What a strange and bipolar health fortnight.

This is the good side:

The Friday afternoon before last, I was sitting in bed in a last-ditch effort to try to study.  I'd failed dismally so far, sitting in front of the computer and trying to make sense of the assigned readings while being distracted every three and a half seconds by something other than the assigned readings.  Earlier in the day I had given in to tears in pure abject frustration.  No matter how hard I tried, I just couldn't seem to focus on the words in front of me long enough for them to sink in.  I was already getting behind in my studies, and it was only week 2 of the trimester.

Then my partner came home with the envelope which contained the test results that said that I have a condition called pyroluria.  Even though I had strongly suspected it, it was still a surprise.  Pyroluria is a condition where the haemoglobin in the blood produces too much of a particular substance called kryptopyrroles.  This substance binds to vitamin B6 and the mineral zinc, and so when the body excretes the excess, it rather unfortunately takes those substances with it.  And so I find out that I am uber-deficient in those two things.  Unsurprisingly, both are used to treat ADHD.  Unsurprisingly, people with pyroluria can't handle stress.  That'll be me, sequestered away from the world for years on end while I try and deal with why my body is so fatigued, so depressed, so anxious, why I just can't bloody cope.  I think I have the answer.

And so slowly over the past two weeks I have built up my levels of B6 and zinc.  I am taking five times the daily recommended amount of B6, and I know it's still not enough (apparently the way to measure when you are having enough is regular dream recall.  Not even close to that yet).  And I am starting to notice a difference.  The B6 in the morning and the afternoon is giving me this lovely energy.  Oh, it's nothing normal people would be able to notice.  But for me, there is this new stability I am feeling in my body, an understanding that a piece that has been missing for a couple of decades has now been put in place.  I can only imagine this energy will continue increasing.  The zinc at night (three times the recommended daily dosage) is helping me sleep.  I am getting so tired at night some nights that I could go to sleep at 10 pm if I needed to.  I can count on one hand the success I have had in managing to get to sleep at 10 pm over the years.  It would be amazing if I could.

~ * ~

This is the bad side:

I have high levels of copper.  I first suspected it over seven months ago when I did a home heavy metals test.  The resulting symptoms when I tried treating the high copper were enough to convince me that (a) this is something of what schizophrenia feels like, and it's hell; and (b) though I was only a quarter of the way through the bottle that would help get rid of this excess metal from my body, this was as far as I was able to go with it.  There was something else that needed to give.  There was something missing which was making this attempt impossible.

Hence trying the test for pyroluria.  Hooray for intuition - I stand in awe at the powers of intuition I have developed about my own body, because I was right, and a handful of jigsaw puzzle pieces are starting to fit.  B6 and zinc both displace high copper levels in the body.  These levels have become high in the first place because of the lack of those two substances in circulation.  And so the blood, in its wisdom, noticing these high levels of copper circulating within it, began the task of secretion.  If it can't get rid of the copper in any other way, it will hide it away.  And so it does - in the liver, in the brain, in the lungs, in the kidneys.

And so now I have begun reinstalling B6 and zinc, my body is taking the opportunity to get rid of the copper, now that it finally has the chance.  And so out it comes, from where it's been hiding all these years, back into my bloodstream, and if I don't have a sauna, or shoot coffee up my arse (I never did make any pretensions to this blog post being romantic), then I begin to feel those hellish symptoms again.  Like yesterday, when I didn't have time for a sauna or to shoot coffee up me bum.  I am still trying to find workarounds for the emotional symptoms.  There are certain supplements which help in the detoxing process (and certain other ones I am taking, such as chlorella), but it's a process of working out what works best.

When I feel like this, I feel in hell.  Last night, my partner quietly but forcefully said to me, "I need you to stop talking now."  I hadn't realised that I was raving, but apparently I was.  But his comment came out of the blue, and I'm a fragile soul, and so it wouldn't have mattered how he said it, I still would have broken into 1037 pieces of glass.

Because it's such a weird dreamscape from here, when I am feeling like this.  The only way I can identify that what I am feeling is spilling over into the outside world is when feedback like this happens.  And then I think of other people I know who I suspect have high copper levels, and how they sometimes have a tendency to go on and on about certain topics until I'm exhausted.  And so suddenly I realised last night that that was me, and that was how I was being.

It makes me want to run away as if my hair is on fire and live in a hole at the bottom of a bridge until I get all this stuff sorted out.  It makes me never want to have to deal with another human being again.  That's how I feel when this stuff is running through my veins. Until I stop feeling like this - which could be any time now - and then I'm back to normal again.  Normal, hell, heaven - who the fuck knows what world Susie is going to experience next hour in the rollercoaster that is copper displacement?  Which nobody else in my world knows much about.  I'm really tired of having conditions that nobody else knows much about.  It's an extra slap in the face having to explain yourself to disbelieving people.  They should be comforting me, not me having to educate them.

But then "should" is a pointless weight to place on your shoulders in these times.

But it's just one more vulnerability to pile on top of the hell that already is dealing with this stuff.  But hey, at least I'm not like this full-time. Not like all of those poor bastards getting around out there with full-blown schizophrenia.  Not like the guy I used to see when I worked in the city.  He was the gentlest soul imaginable, a beautiful man, with no home and a dose of dealing with worse than this full-time.  God bless him.

The World Bank and the IMF are probably not particularly great choices of subject matter to be obsessing about lately.  But that's where my Medical Anthropology studies have been taking me the last couple of weeks.  Is there anything more frustrating and hellish than being able to clearly see the machinations of these psychos?  And to see how long we have put up with it when we don't need to?  And how many people are still asleep to it?  And how their policies affect the poorest of the poor?  And how awesome the world would be without their evil influence?

But like I said, probably not a great choice of subject matter when you're dealing with fluctuating levels of a substance that inclines you towards paranoia in the first place.  No.  Better to lay that one down for another week. Even though it's so hard to when I feel like this.  That's another gruesome fact - whenever I feel like this, the very things I should let lay low, I can't seem to let go of, and I gnaw at them like a dog at a thorny foot.

And so this is how things are for me lately.  Depending on what day you talk to me.  And on the bad days, it depends on what hour of the day you talk to me.  On the good days, everything is coming along beautifully and I can see this lovely vista on the horizon where life gets a whole lot easier, and I get more of it back.  These good and bad days are both the opposite sides of the same coin.  This is the hell side.  And while I say reminders to myself like "This too shall pass," it won't be a moment too soon when it all does.


  1. I can't even imagine what this is like, Sue. I'm very glad that you're on the way out of it! Any idea how you picked up all that copper to start with?

  2. Great sleuthing on behalf of your body. I've done some of that too, and it has helped immensely.  I kept seeing a vista like yours also up ahead and it gave me the energy/hope to find answers, I think the vista was part of the body's way of healing.

  3. Oh Sue, as you say, some major goods and bads here. Wishing you strength and continuing improvement.

  4. what a journey you've been on
    but how exciting it must be to finally have some answers and be able to form a strategy for regaining balance and wellness
    hooray for trusting your own intuition and listening to your own body

  5. Even I can hardly imagine what it's like, Harry - and I'm living it :)

    The pyroluria condition has contributed to my body not being able to deal properly with copper, so I would suspect it is mainly that.  I was also on the pill for about a decade, so that would have contributed also, apparently.

  6.  Yeah, the body is amazing, isn't it?  Those vistas we hold on to to work towards.  It's an amazing feeling communicating with your own body, isn't it.

  7. Thanks, Ms Kel.  It's funny - I'm so close to seeing results and so much is going on in my body that I can't drum up the excitement, apart from in little spurts.  But that will come, once all the copper-related stuff goes away :)

  8. Fierce fierce fierce, so fuck off fierce. Inspirational. Keep going, you're a star!

  9. Thanks so much for this, Emma :)

  10. Wow, there is a term, it just struck me for what you suggest, I think it's called bio-feedback.  Isn't it true though that positive thinking can improve health — depression can decrease good health?  And the other thing that comes to mind is the placebo effect, that one always stuns me  – you, know, when you read that some drug produced 40% improvement in the people who received it and 20% improvement with placebo.  I always say, hey, wait a minute how did that take place, the placebo rate of success?  Was there really an illness there or not, how do those people get cured with placebo.  The vista is a placebo maybe, some sense of expectation of well-being that fulfills itself. 

  11. I've never looked into bio-feedback and don't know much about it at all.  But what I've read sounds really quite fascinating.  It is so true that positive thinking improves health.  I can feel it. 

    I guess placebo and positive thinking are linked, aren't they.  It is definitely fascinating terrain, and so complex.  I guess it would be completely different for every individual.  But I like thinking of the vista as a placebo, most definitely.  It's something to aim for.  It's like an empty box that I'm walking towards, and in it is my health.  So in a way I am creating my own health by making a space for it. 

    Although that's not the only element, is there?  If you don't have the right elements in your body to enable you to walk that path to start off with, then you won't get there, I guess.  (But then, perhaps some people do?)  Thanks for the mind trip, haha, Sarah :)

  12. Wow, pretty interesting post. It reminds me of my experience working out that I had Pyroluria, felt I was always zinc deficient and copper toxic, that led me to Pyroluria. Getting rid of the excess copper is tough, I did a lot of walking while I was detoxing, it helped flush it out.

    The post also reminds me of when I used to study and couldn't concentrate (before the days of taking my supplements)...very frustrating, just had to study when I could, for however long I could.

  13. Geday, Harry. The copper situation IS tough, isn't it. I bought a secondhand far infrared sauna several months ago expressly for the purpose of getting rid of the copper. I think I shall always have to use it, but at the moment I'm trying to have a sauna every day but not always succeeding. Today, though, I did GARDENING of all things! Gardening, for someone who's been all fatiguey and stuff? Wonderful! I wish I didn't have a meltdown at the end of it, but that seems to be par for the course for me at the moment with this metal detox. It's humblying ... but humiliating also. Did you ever do any sort of heavy metal analysis? I have found out through hair mineral analysis I am high in barium, beryllium, cadmium, zirconium ... makes me wonder how I'm standing, really.

    My concentration has improved also. That is a bit of a scary feeling when you can't, isn't it.

    Glad to hear you are talking in the past tense about your copper and attention issues. Both are receding for me also. It's like redemption, release, respite from the loony bin :)

  14. I remember having meltdowns quite clearly, if I overexerted myself or didn't eat at the right time I just crashed and burned. I had to manage my energy so carefully back in those days.

    I never did have a hair test, I kept reading conflicting reports about whether they were valid or not. I think with low zinc it just lets every other mineral build up.

    Yeah, the worst part about the loony bin scenario is that you know you're sick but you just don't know how to fix it (before you find the cause).

  15. I am about to get tested for this condition and after all I have read I am quite certain my pee will reveal a mild to moderate condition. I am scared (of having something permanent) and excited (about the possibility of having a better quality of life) and will be very angry if I indeed I do test positive for this condition as I can't comprehend why doctors don't know anything about it.

  16. Hi Amy. I totally understand that anger. It's like - what, because it's treatable with unsexy and inexpensive non-Big Pharma vitamins it gets relegated to the sidelines for decades on end?

    It can relate too to the scared and excited parts. Good luck - let me know how you go.

  17. we have pyroluria facebook page... you are more than welcome to join us. lots to share and discuss. for me it has been a lifeline.

  18. Fantastic article! Very informative. You seem so switched on and also so likeable and interesting. I also recently discovered I'm pyroluric. What a relief to know we can do something about it!

    For anyone who's interested, I also recently discovered the benefits of taurine and NAC (n-acetylcysteine). Taurine at about 500mg 3 x daily has really helped to stabilise my mood swings. I mean REALLY helped. The NAC helps the body produce glutathione (which is generally low in pyrolurics as it requires zinc and B6). Whenever I get that horrible sinking, anxious, tense 'want to shout and stomp my feet and hide away' feeling, I take about 1g of n-acetylcysteine with the taurine and within 30 mins I feel significantly better. Seems to be helping clear something from the blood stream via the glutathione pathway.

    Take care everyone!

    1. Hey Drwyd, thanks for dropping by and commenting. I agree, it's a relief to get some answers and to be able to do something about it, eh :) Hooray for NAC and taurine. I am taking NAC as well to help with my high copper, along with molybdenum. I did take taurine for a while but I don't know that it did anything; I really would like to get my levels checked to find out whether I need it, but I'm so glad you have found something that works for you. Yay!! :)

  19. Sounds like me when i first figured out i had Kryptopyrrole disorder(pyroluria). I was very copper toxic from years of this being untreated and having very low zinc levels.

    The detox took months, i had to go very slow, some days were unbearable i really didn't feel myself. Some things that helped were supporting my liver/improving bile flow with taurine, ox bile and other herbs. Using some natural chelators such as Pectasol-C(Modified Citrus Pectin) and Chlorella which are helpful to "mop" up the heavy metals.

    Self foot reflexology i found very helpful to keep the toxins moving out. Dry skin brushing aswell.

    Here is a link to Pectasol-C incase it helps

  20. It's great to hear about someone else's experience with this frustratingly obscure condition. I totally get having to explain it to people and have them look at you with mild humouring kindness.


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