Pyrrole Disorder Q&A Sesh #2

Would you like to be featured here?  If so, drop me a line at susieq777@dodo.com.au.



This is the second in a series of interviews with people who are treating their pyrrole disorder (pyroluria), and/or the practitioners who are treating them.

Today, we are talking to Christine Barnes.  She is principal naturopath at The Body Guard Clinic at Noosa Heads, on Queensland's Sunshine Coast.

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Okay, so firstly, tell me about you. You have a history of PD yourself, is that right? 

I do not have PD.  However, I live with PD everyday.  My husband has now essentially resolved his pyroluria - ie, after an initial intensive treatment, he self manages with a relatively low dose of zinc, P5P, and a few other supplements.  He's a much more pleasant person to be around than before treatment.  Still not "glass half full" but we're working on that.

My mother is very high on the pyroluric scale.  She has a good many additional health issues but she is fine when taking her medications.  However, sometimes she forgets and the symptoms of the pyroluria return.

How did you come to start treating patients?

I've been involved in natural medicine and food as medicine ever since I was a teenager.  At the time I  became fascinated with books extolling the virtues of health from fresh vegetable juice and nutrition, etc. I was living in the Australian bush and over 50 years ago there was not much access to basic ingredients.  That really made me even more curious and led me to explore various diets and medicinal herbs and foods.

Since then, I've followed the path of studying health in many and various ways, studying with experts in mediation and yoga all over the world, achieving qualifications as a practitioner in Naturopathy, Nutrition Medicine, Herbal Medicine and I also have a Masters in Wellness from RMIT University.  My business branding is 10 years old, but I've been treating patients for about 20 years.

How many PD patients have you treated, roughly? Would you say that there is a standard type or types of PD patient ?

I'm sorry, I've lost count of the numbers of PD patients - even roughly.  My clinic specializes in stress, anxiety and mental health, and a high percentage of these patients also suffer from PD.  I should say that I have yet to have a client that suffers from PD alone.  The very nature of PD means that other parts of the body are going to be put under stress and, as we all know, stress is implicated in so many conditions.

Any success stories that you would care to share to encourage those who are embarking on their own treatment?

My husband is the success story that is closest to my home.  He refused point blank to accept there was anything wrong with him for years.  Refused the test.  Did the test then denied the results of the test as having any consequence.  Even today he refuses to undertake a hair tissue mineral analysis or comprehensive stool analysis.  He has absolutely been my most challenging patient.  However, since an initial intense and very begrudging anti-PD course of treatment, he's improved remarkably and now only has to take a small number of low dose pills.  His leaky gut (again denied) has also significantly improved.

I will also cite another patient who was also in denial of her anxiety, experienced over-thinking of relationships, chronic relationship issues, and sensitivities to stress at work, etc. It took me 2 years to convince her to take the precursor to serotonin and within two weeks said she'd "never been this happy before" in her life!  Only then was she open to further investigations the results of which are now part of her ongoing treatment.

Any challenges with PD?

Suspicion is part of the PD experience.  It's probably the characteristic I struggle with most because involved in suspicion are also issues of acceptance and compliance.  With the internet on everybody's fingertips, the suspicion can evolve into the checking of all sorts of websites to get a myriad of opinions and non-peer-reviewed "facts".  The suspicion can then turn into complete indecision because there are so many "facts" on offer.  Finally comes the stage of non-compliance which arises out of fear of doing something wrong.  This compounds the anxiety, another trait typical of PD, and we end up with a vicious circle.

Forums keep me in touch with the general community response to PD and can be a terrific support for patients, but they should not be used as an alternative to an experienced practitioner.  At the same time, I should say that I certainly don't mind being challenged by informed patients and that can make consultations interesting and educative for me as well.  I do encourage patients to be involved with their health issues for it helps in recovery and long-term wellness.

What about testing? How often should we test?

Quite frankly, I think the PD urine test is not that helpful to develop a treatment protocol.  However some people prefer to have a "name" and "number"to their experience.  If economics are a major issue I prefer to work with the patient to prioritize any investments in tests and the PD urine test is not high on the list.  Levels of magnitude in the PD test are no indicator of strength of possible treatment required as the latter is dependent on so many other factors (gut, toxicities, methylation, sensitivities, etc).  Clinical observation, and a complete hair tissue mineral analysis, combined with bloods (including ceruloplasm) tell me so much more and are essential to developing an individualised treatment protocol.  I know that PD sufferers can get a little fixed on their levels with the pyrole tests - all part of the PD experience.  On the other hand, if the test helps them get more in touch with the disorder so as to encourage action and involvement, then why not.

What can people expect once they start supplementing? Side-effects, time to see benefits, etc?

Every patient is different, every experience with treatment is different.  Some might copper dump and their experience of PD might get worse in the short term.  However, I try to avoid that if at all possible.  Some might experience benefits within a few weeks.  Others longer.  Variations to response of treatment are affected by age, any concurrent diagnosis (e.g. OCD or depression), individual absorption, gut health, parasites, toxicities, thyroid issues, diet and lifestyle factors.  As you can see, its very hard to give any form of general conclusion about expected duration taken for relief, etc.

Why do you think PD isn't more well-known? Do you believe the perception is slowly changing in the community now that orthomolecular medicine and epigenetics are slowly becoming more mainstream?

There is growing community awareness that we live in a toxic world and many of us are suffering because of it.  An increasing number are seeking non-toxic non-side-effect solutions, hence the growth over the last two decades of naturopathy, natural ingredients, organic foods, etc.  Part of this awareness is a growing interest in orthomolecular medicine and its use of mineral balances and vitamins et al as essential treatment tools.  Combine this with the recent and continuing revolution in genetic understanding.

We now have more tools than ever, and more information and understanding at our fingertips than ever before to assist in the process of healing and moving towards our individual level of optimal wellness.

Unfortunately, for many practitioners, PD remains a largely fictitious problem.  Any even slightly interested practitioner introduced to PD might initially check out Wikipedia and be severely disappointed.  This is not surprising for the science behind PD is still very much in its infancy.  It will takes years of peer-reviewed research before PD is more widely accepted. Researchers state that even after a significant amount of research it can take up to 40 years for the results to filter into clinical practice interventions.

Here are some links to blog posts I've written about pyroluria:
Resistance is Futile
From Anxiety to Happiness - a Client's Own Journey
Vegetarianism - Lifetyle Choice or Delusional Thinking?

Do you think the colour orange is unfairly discriminated against?

Orange is sacred ~ sunrise, sunsets and yes can be discriminated against ~ but looks good on me ;)

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

Happy - runs in my head for at least that long anyway.

You can call Christine on 61(0) 7 3151 2183.

Crowd Control

Several months ago I joined 100,000 people at the MCG and saw my beloved Hawthorn win the 2014 AFL premiership.  I was anxious because my health's not standard, and we had standing room tickets, and I was worried I wouldn’t be able to last the distance.  (I sat down in-between quarters and went home not too long after the game finished).  And I was anxious because it was, well, exciting.  The Grand Final is a big occasion here in Melbourne, and you could feel the anticipation flooding through the MCG.

And I was anxious too because you never know how things are going to be.  The Swans were hard, hard favourites.  It's funny how consensus swells, like the ocean, like a crowd.  In the previous weeks favouritism for the Swans had hardened, and the more people who jumped on the bandwagon, the more that jumped on the bandwagon, until it seemed almost bizarre to think that Hawthorn had any way of winning.

Still, nobody expected what happened.  Sydney weren't switched on for that unfathomable reason that is unable to be measured.  And while from a football watcher’s perspective it was possibly a bit of a fizzer (that fruckin' Hawthorn, we're sick of them) really, from my perspective I got to watch the brown and gold perform poetry.

The next day, Erin Riley shared in The Sunday Age how her Grand Final experience as a Swans supporter was made intolerable, not because of her team’s on-field shellacking but because of racist, homophobic and abusive Hawthorn supporters off-field.  As a member and a football-goer, I think about this sort of thing a lot.  Wouldn't it be cool if people had more empathy, cared how much their aggressive and repulsive actions upset and disrupt other people?  How do you stop offensive behaviour from happening in public places?  Can you?

What can we expect the AFL/MCC to do when supporters are obnoxious beyond the pale?  Do they get one of their security minions to throw them out of the ground? That's an option.  Although in Erin’s case, it quite simply didn’t work.  We’ve had other instances this year where people have been thrown out of the ground and had their memberships cancelled.  I would be quite happy to see nasty dickheads thrown out.  Might help them learn to handle their own shit enough so they can stop projecting it onto other people.  But cancelling their membership?  That's a ridiculous over-reaction, surely.  If you punish someone's love because of their hate, where does that get you?  Most likely a hardening of the sort of thoughts and ideas that fuelled the behaviour in the first place.

But even throwing people out of the ground doesn’t work out so great for the vibe for the rest of us if the cops and security guys required for such actions get to roam the aisles inspecting us for naughtiness week in, week out, even during the times when nothing bad is happening.  It makes for a rather intimidating and unfriendly atmosphere.  Add to that the directives, shown several times a game on the scoreboard, to SMS the seat position of those indulging in bad behaviour.  A hostile environment surely breeds more hostility.  Or at the least, alienation, which is encouraged even further by the promo stuff going on in-between quarters, which drowns out the possiblity of conversation with the person next to you.  Gillon McLachlan has made some good, people-focussed changes to the fixture for 2015.  The AFL needs to take a look at this kind of thing as well.

So what else could the AFL do to keep unruly elements in line?  Seeing so much of this cruddy behaviour comes from people who’ve had six too many, how about not serving alcohol at the ground?  Ooh, there's a controversial idea.  That would go massively towards stopping the grosser end of the abuse spectrum.  But can you imagine how worked up people would be if they couldn't get smashed at the footy?  I mean, what are ya, mate?  And anyway, I do wonder if the AFL/MCC wouldn't blanch at enacting those kind of measures in a society where alcohol is such an embedded facet in its perceived ability to function, quite aside from considerations of revenue loss.

More alcohol-free zones at the footy would be a start, though.  Then us overly sensitive ones could band together and enjoy the footy (whatever the result) without feeling intimidated by people who've lost the ability to keep it nice – and by being annoyed by bands of people getting up and down throughout the game to go stand in line for the next round, disrupting others trying to watch the game in the process.

Some may say that abusing the opposition is part of the game, and though I don't like it myself I am a lily-livered wussbag, who empathises with every losing team my beloved Hawks has had the pleasure of beating this year, and who cries at the killing of mice.  Wouldn’t it be nice, though, if more of those people whose disenfranchisement with their lives bubbles over with their beer on the weekend possessed a modicum of intelligence and humour to go with it?  Those who can hassle the opposition with a touch of finesse, rather than a bunch of VB and under 8s style?  Delivery is everything, folks.

But the other side, though, in the quest to make football more friendly, is us.  We're just not really all that good at being with each other in a nice Buddhist kind of way, are we?  We can't see this in ourselves, but we can sure see it in every other bastard getting in our way.  So if the actual environment of the MCG is the nature element that needs changing, we're the nurture part.  We need changing too.  We hate each other.

The footy is all about the story.  Part of the reason we watch sport is to see teams and individuals rising against the odds and coming through.  We want to see them believe in themselves.  We need those sort of stories.  They’re as old as time ~ so old in fact that they've become cliche.  The hero's quest.  Overcoming your inner demons to land the prize you've been aiming for but missing.  The stories that remind us that we are bigger than cogs in an economic wheel, or fodder in wars, are reflected on the footy ground, and on our screens when we watch LOTR or Game of Thrones.  The same kind of story goes on off-field in every person.  Many of us have been born into a murky, rather nasty cultural soup.  The world is a cold one, and our shared social experiences are nowhere near as much as we need to keep us glued together, both personally or collectively.  Indeed, I think we have forgotten why a culture needs glue, even while we see evidence of its lack everywhere.  And then, when we do have shared social experiences, they're not innocent, because they're surveilled and scrutinised.  Guilty before being presumed innocent.  It's as though everyone assumes the Gollum in us, but what about the Aragorn, the Geladriel, the Ent?

If we people had emotional smarts, combined with an MCG that made us feel like we belonged, we would find ways to gently and creatively rectify disruption amongst ourselves.  We wouldn't find the need to demonise the opposition.  But unfortunately, being brittle and not liking each other much, this makes it somewhat difficult.  We don't display much understanding of why being kind and gentle to people we don't know is a little bit of awesomeness.  Instead, we have the kind of environment where everyone in your crowd is your enemy except the person on the end of your phone.  In this environment, you feel so alienated that you really do feel a massive urge to get a new pair of silicone breasts.  And it doesn't take much to set off fires.  Because man, we all hate each other's guts so.  It's freakin' scary.  And we're so angry.  We need to find a way of tolerating the intolerable.  Inside as well as out.

Crowds are a reflection of the people who make them up.  Each of us is facing a larger hero’s journey too, the little Davids against the entire society.  The thirsty frog confronting its own water.  We are told by our rather shitty water that we are small.  Our quest is to redevelop the belief that humanity as a whole and people individually have inherent dignity, and are worthwhile, despite the dross elements constantly on display.  They are dross partly because that is what they have grown up in.  And so have you.  But transformation is always possible.  We go deeper and wider than we think.

Interior Triologue

Little Susie:

I'm not feeling so great.  And it's hot.  Can we watch a movie?


Capable Susie:

Sure!  Movies are like luxurious in the middle of the day.  Okay.  Well, let's set up the TV so we can watch a movie through the laptop.


Learned Helplessness Susie:

Oh, but I don't know how to do that.  What do I do?  I'm too hungry to do this.  I need food, but I'm feeling too fatigued right now to make any.  I can't think straight.  What is food.  What can we eat?  I needed to go supermarket shopping three days ago.  And it's so hot!


Capable Susie:

Okay.  Well, let's eat this banana then for the moment, shall we?  And then we can think about this.


All three Susies eat one large banana.


Learned Helplessness Susie:

I don't know what to do.  What do we need to do?  There's all these cords.  It's so confusing!


Capable Susie:

Well, let's work this out methodically.


Learned Helplessness Susie:

But I don't knwo what to do!  Maybe we should wait till Anth comes home and then he can do it.


Capable Susie:

Why?  We are perfectly capable of doing it ourselves.  Anth has been at work, on a Saturday, in the heat.  Do you really reckon he wants to come home and do something you're quite capable of doing?


Learned Helplessness Susie/Little Susie:

But something bad might happen if people with vaginas act like it's not 1952!  We might break something!  Anth might yell at us for meddling in his cables!


Capable Susie:

Well, we live here too, don't we?  When was the last time he yelled at you for meddling?  That's right - never.


Learned Helplessness Susie/Little Susie:

Yeah, but even if he just gets annoyed, that's bad!  That means something bad is going to happen!  That means maybe we don't exist!  We can't deal with a person with a penis getting annoyed at us.

And anyway, we don't know what to dooooooo!


Capable Susie:

Well, imagine if Anth wasn't here.  Imagine if you were all by yourself in the world and you had to sort it out.  What would you do?  That's right, you'd look it up online and get someone else to tell you what to do!

And so we did, and so the S-video cable that we were already familiar with but had forgotten because sievememory was connected, and Little Susie and Learned Helplessness Susie did manage to find their way around hooking it all up and yea, it wasn't even that bloody hard, for crying out loud.  And though there was still an issue after that, that's not the point.  I would have been able to continue ironing out the issues but by this stage I was so bored with the whole bloody thing that I quit.  Voluntarily.

See, this is how women collapsing in the face of men's apparent greater knowledge threads down through the ages, way past the time when it's not actually scary for women to take charge in their own minds.  Or if not gender stuff, insert class stuff, or culture stuff, or whatever group of humans is disaffected by another so that it inserts itself into their limbic system, where it can stealth virus you undetected.

The first step is acknowledging those fears are there.  The second is accommodating them kindly.  They didn't show up just for the fun of it.  Healing needs a gentle place to land, and children need patient adults to guide them.  Even if those children and those adults happen to share the same body :)

Pyrrole Disorder Q&A Sesh #1

Would you like to be featured here?   Drop me a line at susieq777@dodo.com.au.


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.

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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?

Mornings:
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)

Evenings:
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!