In the Beginning

So who is this girl and what is this blog all about?  Well, let’s ignore the first part for now (it’s waaay too complicated) and talk about my gut.  Yep, my gut.  You see, I have gut dysbiosis, hypochlorhydria, anxiety, chronic pain and Irritable Bowel Syndrome, all symptoms I’m told, of undermethylation, high copper, pyrroluria and a defect of the MTHFR gene.  It’s all a tad confusing and it’s been making my life, shall we say, a little difficult.  Alright, I’ve had a gutful.  I’ve lost my job, lost my confidence and my being sick all the time has put a whole lot of strain on my personal relationships too.  The marvels of modern medicine, for all its wonder, can apparently diagnose me but not cure me.  So here’s the plan, I’m going to get better.  How?  I’m not entirely sure yet, but by Jove, it’s going to happen.  I’m going to make it happen.  I’m going to get well or die trying!

 

It all began when I was 28.  I had been graduated from my graduate diploma in legal practice, after a double degree in law and arts, and was working as a personal assistant for an architect.  Prior to this date, I was the kind of girl who could eat anything without regret.  I recall on one occasion, drinking 2 litres of expired milk in one night just to to get it out of the fridge (pouring it down the drain, oddly, never occurred to me…) and I would feast on poorly heated Chinatown food court spoils with fearless glee.  Then we got the virus.

 

The virus itself wasn’t anything out of the ordinary, although I’d never had one like it.  Its main symptom was gut wrenching cramps, spasms that were so painful, they’d bring you to your knees.  Almost everyone in the office succumbed, even our beloved director who according to legend, had never taken a sick day in his life until he fell victim to the virus!  The thing is, everyone got better… everyone, it is, but me.

 

The decline from here was.  I seemed to have recovered, like everyone else, and life went on.  I finally found a position as a lawyer and began embarking on the career I’d worked so hard for, but my stomach was never quite the same.  At first, it was just constipation.  Months and months of constipation and the crippling, agonising pain of the gas build up in the abdomen that results.  Then came the nausea.  Intermittently at first, so much so that the string of GPs I sought answers from all believed I was just having the same virus, over and over.  I was prescribed hardcore antibiotics and told to eat more vegetables.  Of course, as you may have guessed, the prescriptions didn’t work and the nausea became more and more regular.

 

Then the anxiety began.  Ok, so the anxiety had been around for a while in reality.  I’d had a brush with panic disorder in my late teens that had cleared up of its own accord by my early 20s.  I’d had a panic attack once on a plane since then (I really don’t like planes) but nothing like this.  All of a sudden, I’d be talking to someone, a client or a colleague, when a wave of heat would wash over me.  I’d become painfully self-conscious and get an inexplicable desire to go to the toilet, even though my bladder was empty.  I would become dizzy, short of breath, sweaty and foggy minded until I removed myself from the situation and the feelings went away.  I had no idea what was happening to me, but considered it might be part of “the virus” that was still lingering in me.

 

In addition to all of the above, I had been suffering with back pain since my mid-twenties.  A strain when shifting boxes had gradually cemented itself into a chronic problem for which there seemed to be no solution.  X rays and CT scans showed no major abnormalities and physiotherapists and chiropractors alike threw their hands up in dismay.  The only long term solution proposed was ibuprofen, a muscle relaxant, and lots of it.  No more than 6 a day, I was told, so I tossed them back like jelly beans.

 

Time went by and the episodes of nausea and diarrhoea were sporadic, so much so that on Christmas Eve, I believed I had eaten a dozen dodgy oysters as I sat at my desk shivering, a blanket wrapped around my clammy shoulders.  I hated my job and began searching for a new one.

 

I finally secured an interview at a firm I was eager to work for, something I’d aspired to since my uni days but on the day of the interview, my stomach was not so keen.  My belly flip-flopped like a dolphin in a Sea World spectacular and anything I ate either came up shortly thereafter or made its way through me with rapid intensity.  Believing I had my “virus” again, I phoned the interviewers to cancel but nobody answered the phone; I was going to have to tough it out.

 

I must have physically trembled through that whole interview, I remember feeling sick to my stomach and terrified that I would ruin my big chance by vomiting on the practice manager.  As it would happen, I did not vomit and I was offered the position a few days later but the victory was made bittersweet by my ailing health.

 

By this stage, I’d been sick on and off for nearly a year.  I went to my GP in desperation.  I attended a free clinic, you know the ones… Make an appointment then wait an hour anyway, only to be shuffled in and out within a total of 5 minutes with less information than you began with.  It was always the same, whichever doctor I had seen previously was no longer available or had left the practice and none of them really seemed to care about my list of vague, nondescript symptoms.  I actually had one aging doctor with a limp tell me to look up IBS on the internet and “see if that sounds like you”.  Finally I told the doctors I had anxiety too and after a variety of tests were performed including multiple blood tests, a colonoscopy and one charming weekend in which I had to collect my urine for a bottle for 24 hours (I had to hide the jug in a giant handbag so I could go to the shops to buy groceries!) I was referred to a psychologist.  The physical symptoms, I was told, were psychosomatic and purely the realm of the shrink, all in my head like some kind of crazy person.

 

I’ve never been the kind of person to believe in God or karma or cosmic purpose, but I guess seeing that psychologist was meant to be because after a year of therapy with no improvements whatsoever he finally said to me, “this is a physical problem, you need a good GP.  Here’s one I know who I think can help”.  And that’s how I finally found a doctor who was willing to talk to me, willing to listen to me and most importantly, didn’t want to send me to the loony bin!  After only one session she said she had strong suspicions and a blood, stool and urine sample later, it was confirmed.  I had pyrroluria, high copper, gut dysbiosis and I was undermethylating.

 

So what’s the treatment for all of that?  Well, that’s where it gets tricky.

 

 

 

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8 Comments

  1. Betsy Davenport said,

    July 5, 2012 at 9:16 am

    Bravo! I read every word, eager for the next. Keep going!

  2. Bronzewing said,

    July 5, 2012 at 10:01 am

    It’s so great when you find out it isn’t all in your head isn’t it! Good luck on your journey. I’m on a similar one. It’s your fellow mutant gene club member, Tina, here. xxx

    • July 9, 2012 at 2:01 pm

      Hello Tina, thank you for visiting my little blog! Always nice to have a fellow mutant around. 🙂

  3. hollytietjen said,

    July 12, 2012 at 10:39 pm

    So sorry for your struggles. Are you heterozygous or homozygous for the MTHFR polymorphism?

    • July 12, 2012 at 11:32 pm

      Aw, thanks Holly. It’s not so bad, there are plenty worse off than me (I just like to whine about it more, it seems!).
      I’m heterezygous, so just one screwy allele, one ok one.
      I’m always getting the two terms mixed up… As my dad said, “it’s important to know if you’re hetero or homo”.

  4. July 14, 2012 at 4:45 am

    Wow you haven’t had a lot of luck have you?

    Look forward to reading about your endeavors to get well xx


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