Pyrrole Disorder Q&A Sesh #1

Monday 3 November 2014

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This is the first in a series of interviews where I speak to people who have embarked upon treating their pyrrole disorder/pyroluria.

The disorder is being increasingly taken seriously by some in the medical field - although much more by those in allied health fields.  (There are historical reasons for pyrrole disorder not being accepted in the general medical community - it's generally not even known about there.  We will talk about that in a future post).  Many people with chronic or systemic health issues go where they will be heard, aided by what they've read of the experiences of others on the net.  Often that tends to be what is considered in our current paradigm to be the fringes of acceptable medical practice.  Hopefully that will change in the future and more GPs will come to understand the value of supplemental treatment for pyrrole disorder.

Today, our very first cab off the rank is Kristy P.


So, can you give us a bit of picture of the differences in your health and life pre-treatment compared to now?

For my whole life I’ve been described by close family and friends as ‘moody’.  When something annoyed me (and a LOT of things annoyed me), I could go for weeks giving whoever annoyed me the silent treatment – even people I lived with, ESPECIALLY people I lived with.  My mum is the same and I always just put it down to me being just like her and I didn’t really think there was anything that could be done about it.  I was always a shy child but came out of my shell in my early twenties.  During my hours/days/weeks of annoyance, I often couldn’t process what had actually annoyed me, because generally it was a number of small things that had built up into something huge and seemingly insurmountable.  It was very difficult for me to vocalise what was wrong and why I was upset and by the time I worked it out in my head, everyone had given up asking me and had left me to ‘get over it’.  Once I was in a state of withdrawal like that, I almost enjoyed being there, hating everything and everyone and wallowing in my own self-pity.  I was a nightmare to live with.

My diagnosis came about accidentally.  I had taken my toddler to see a chiropractor for a general checkup and the chiro was doing kinesiology testing on him for foods and chemicals and the pyrrole vial came up positive.  We were a bit surprised because my son is one of the calmest kids I know.  After researching about it, I knew for sure I had it as well.

I have now been on the supplements for about six months and it’s like I’m a whole new person.  Now, when things annoy me, I am able to say something straight away – no more wallowing, no more holding grudges, no more silent treatment.  It’s as though my feelings are more even and structured and not so jumbled.  I’m able to process very quickly what I’m upset about and deal with it then and there and it’s over.  During periods of stress, I do tend to slip back into old habits temporarily but it’s now a case of me being upset and withdrawn for an hour once every two months instead of twice a week for hours on end.  I feel as though some sort of brick wall has been knocked down and allowed me to communicate better when emotions are involved.  I feel more organised inside my head when I’m emotional ... if that makes sense!

Did you have testing and did you work under a practitioner?

I had the urinary pyrrole test done through my chiro and then blood tests through my naturopath.  My naturopath works out what supplements I need.

What supplements do you take?

Pure Innovation Activated B Complex x 2 caps
Pure Innovation Iodine x 1 cap
Pure Innovation Folinic Acid x 3 caps (MTHFR heterozygous A1298C & C677T)
Mediherb Evening Primrose Oil x 1 cap
Thorne Molybdenum x 1 cap (this is only temporary until my copper levels come down)

Metabolic Maintenance Cal/Mag D +K x 2-4 caps
Thorne Zinc Piccolinate Double strength x 1.5 caps
Mediherb Evening Primrose Oil x 1 cap

Has treating pyrrole disorder been the fix for your health problems, or do you have other issues as well?

At the age of 16, I contracted glandular fever and in the years after that, I developed many food intolerances and was constantly tired.  I went to many traditional doctors and specialists over the next 10-15 years with no relief or diagnosis except for vague terms thrown at me like ‘IBS’ or ‘chronic fatigue’.  I’m sure ‘hypochondriac’ was in their heads too.  So I turned to alternative therapists (naturopaths, chiropractors, kineisiologists, etc) to see if I could get some answers as to the cause of my issues.  I found a lot of relief using alternative therapists, but my body would never hold their adjustments or I would give up taking herbal medicine because it didn’t agree with me.  I ended up having to have my gallbladder removed at the age of 29 and then two years later at the end of my first pregnancy I developed cholestasis (a condition where your liver can no longer process the pregnancy hormones).  I decided to see a new naturopath who discovered the connection between my liver issues and glandular fever and she got me on the right track for a healthy body.  Finding out about pyrrole disorder was the final piece of the puzzle for me and I now feel fantastic.  I’ve recently also cut out gluten and feel even better!

What would you say as encouragement to those considering being tested or starting supplementation?

Do it!!  What have you got to lose?  The results can be unbelievable once you get the supplementation right, but be prepared that your symptoms may get slightly worse before they get better.

My result for the urine test was only 20.2 (over 15 was positive) so I only have a mild case, which is probably why I've had such good results so quickly. For others it can take longer.

If pyrrole disorder is so prevalent, how come no one's heard of it?  

During my health journey, I worked out pretty early on that mentioning to a GP that you see a naturopath or chiropractor and *gasp* actually trust them with your health just invites negative comments and isn’t worth the bother.  Each specialist believes their ‘brand’ of medicine is the best, which is understandable.  If GPs aren’t taught that pyrrole disorder actually exists, then they can’t be expected to know anything about it.  Throw in the fact that a lot of naturopaths and alternative therapists DO know about it, GPs then write it off as ‘airy fairy’ and ‘make-believe’.  It doesn’t help that GPs are given incentives by pharmaceutical companies to push their products onto patients.  The treatment for pyrrole disorder negates the need for pharmaceutical help, which could be a big reason it isn’t recognised by the vast majority of traditional medical practitioners.

Do you think the colour orange is unfairly discriminated against?

Just the other day, my son told me that orange is his most ‘favouritest’ colour.  And we all know that 3 year olds know everything.

If you had to listen to the same song on rotation for an hour straight, what would you pick?

“The Song That Doesn’t End” from Lamb Chops Play Along (circa mid 1990’s). Super-annoying for anyone else listening and the title fits perfectly for a song on rotation!

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