Pyrrole Disorder Q&A Sesh #2

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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.