Where To From Here?

“Wow,” I thought when I heard all my diagnoses… “am I going to die?”  Well, no I’m not, so that’s some happy news.  I sat in my car after the appointment and sobbed my eyes out into the streering wheel though I couldn’t really say why.  Fear and uncertainty, sure, but there was something else too.  Relief, perhaps?  Excitement, even?  It’s a pretty life-changing event when you’re told you have a genetic disorder and you’re going to have to re-shuffle your life to deal with it but there’s also a huge sunse of joy in knowing that a) you’re not a Munchausen’s patient, and b) there is a possiblity you might one day, feel “normal” again.

So let’s talk treatments!  The bad news is, there’s no simple cure, no medication that will solve all my problems.  The only treatments that can have an effect are ‘natural’ therapies like mega-doses of the vitamins, minerals and organic compounds that my body is lacking and it’s a sloooow process.  Here’s what my doctor recommended:

Pyrroluria

Pyrroles suck the Zinc out of you, so the big thing you need here is, you guessed it, more Zinc.  I also need B vitamins, specifically B6, B7 and B12, lots of Vitamin C, Magnesium and Omega 6 oils.  I’m not talking about some over-the-counter multivitamin, oh no, that would be too easy.  In order to get my levels back to normal, I need humungous doses of each.  Think 66mg of Zinc, 400mg of B6 and 2,000g of Vitamin C on a daily basis, just to get a feel for it!  It’s a whole lot of pills, that’s for sure, but at what price health?

Hypochlorhydria

This one’s pretty easy(ish).  Your stomach lacks acid?  Well, put some acid in it!  Betaine Hydrochloride is a naturally occurring compound derived from beetroot (beets) that becomes hydrochloric acid in the stomach which, as luck would have it, is what stomach acid is made of.  Combined with pepsin, an enzyme required for breaking down food, I need to take a bunch of these capsules with every meal to ensure my food and supplements are properly digested and absorbed.

Undermethylation/MTHFR

The treatment for my MTHFR mutation is the same as undermethylation, which simplifies life (yeah, right!).  S-Adenosyl Methionine, or Sam-E, replaces the chemical my brain can’t manufacture enough of to make me happy.  Just one pill of this a day, hoorah!

High Copper

Flushing copper out of the body can be a pretty unpleasant experience so it’s recommended you go slowly.  I’m taking Molybdenum to gradually chelate the Copper out of my body but this is a heavy metal, so that’s not a long term solution.  Once the bulk of the copper’s out, I need to keep it out and that means lifestyle changes.  First up, I need to eat less copper.  This kind of sucks because copper is very high in coffee and chocolate *frownie face*.  You wouldn’t believe it but I also need to be careful what water I drink.  Turns out the elixir of life is actually toxic in my home town of Adelaide where copper sulphate is added to the dams to prevent algal blooms.  I’ve invested in a water filter, but I’m told spring water is the truly righteous path for eradication of copper.

I’ve also had to come off the contraceptive pill because high oestrogen equals high copper retention.

Gut Dysbiosis

First, you want to kill off the bad guys, then you want the good guys to re-establish their community.  Now, I’m taking a big old capsule of probiotics every day but sadly, that hasn’t done the job.  I also took a course of anti-fungal prescription pills but it seems they haven’t totally destroyed the enemy either and again, this is where dietary changes are what’s needed to get the balance right again.  I don’t want to kill all the candida ( or so I’m told.  Frankly, if it was up to me, I’d kill ‘em all, but apparently that would make me even worse.  So unfair) I just want to reduce them to a minority and bulk up my population of good bacteria.  Drugs, like bombs, don’t discriminate, they just kill everyone unfortunate soul who happens to be in the line of fire so the next step towards healing is dietary changes.  Candida loves sugar, so cutting that out is a good way to kill it but if your bowel isn’t a nice, comfortable place to live, the good guys won’t come back anyway and your innards will continue to be a barren wasteland, devoid of health and happiness.  What I need to do is heal my gut and that’s exactly what I intend to do.  As of tomorrow, I’m commencing the Gut And Psychology Syndrome (GAPS) diet, a lifestyle plan developed by medical doctor with masters degrees  in neurology and nutrition, Dr Natasha Campbell-McBride[i].  Stay tuned to see what I’m eating and how I progress!!


[i] 2010, Gut And Psychology Syndrome, Medinform Publishing, Cambridge.

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2 Comments

  1. skitzkitty said,

    July 9, 2012 at 7:03 am

    I always knew Adelaide water was BAD BAD BAD but I never knew it could be life-threatening!!! Hope all your treatments are taking effect and you’re feeling better – sounds like you’ve been through hell, hopefully you’re on the way back from there 🙂

    • July 9, 2012 at 2:00 pm

      Thank you for the support, Skitz Kitty! Ah yes, fresh brown Adelaide water… mmmm. Well, to be fair, it is only life threatening to some of us (the lucky ones) but yeah, it’s not the greatest.


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