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You're Not Going Crazy

Kryptopyrrole's, Pyroluria, Pyrrole Disorder -

You're Not Going Crazy

Part 1- You're Not Going Crazy

A few years ago I was diagnosed (by my naturopathic doctor) with Pyrrole Disorder. This condition is still very much unrecognised by western medicine and may remain this way for a very long time, if not forever...

This is because you don't treat Pyrrole's with drugs but rather nutrients.

So What Is Pyrrole's Exactly?

Pyrrole's disorder, also known as Pyroluria, Kryptopyrrole's, Krytopyroluria and Mauve Factor is a blood disorder where the abnormal synthesis and metabolism of haemoglobin occurs. The condition is often genetic but can also be caused by other factors like stress, trauma and gut issues such as leaky gut syndrome (intestinal permeability).

What Occurs from This?

A by-product of this haemoglobin is HPL (hydroxyhemopyrrolin) which is also known as 'Pyrrole'. When you have Pyrrole Disorder, you produce excess amounts of HPL (Pyrrole) which binds to certain essential nutrients in the body, making them impossible to absorb so you don't get the important health benefits.

The main nutrients affected are Zinc, vitamin B6 and the omega 6 fat GLA (gamma-linolenic acid). When these nutrients become deficient a person can suffer from a whole range of symptoms and health issues. I know myself the hell I've gone through before (and even after diagnosis).

What I Went Through Personally...

For many years I couldn't figure out what was wrong with me? I thought I was legit going crazy! I had all of these symptoms of mental illness such as obsessive compulsive thoughts and behaviours (nothing ever felt clean enough even when it was). That was just ONE of my OCD behaviours.

I've suffered with debilitating depression, anxiety, agoraphobia (extreme fear of places and situations that might cause panic, helplessness or embarrassment), panic attacks, mood issues (very up and down), nervousness/edginess, paranoia, suicidal thoughts, inability to cope with stress, anxiety & shyness when having to socialise (even with family!), severe inner tension, lethargy, ultra sensitive eyes to light/dust/wind/air conditioning, quick to temper, frustration because of the isolation, short term memory issues and much more...

Over the course of about 20 years (yes 20 years I know), I saw psychologists, psychiatrists, medicine men, pranic healers, energy healers, spiritual counsellors, GP's, cognitive therapists, hypnotherapists, clairvoyants, kinesiologists, naturopaths, nutritionists, aromatherapists, shamanic healers, reiki practitioners, chiropractors, massage therapists, osteopaths and so on...

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I've always been a seeker as I'm sure you are too or you wouldn't be here reading this blog. This curiosity kept me on the quest to find the solution (a natural solution) as I never felt that drugs were the answer to my problems. I just never liked the idea of them even when I saw the psychiatrist all those years ago I knew drugs weren't gonna make me better so I kept exploring my options...

I Found the Solution After 20 Years of Searching

About 2 years ago I went back to my naturopath of 15 years or so, and she said that she believed I might have Pyrrole Disorder. I looked at her puzzled as I'd never heard of this condition but when she gave me some info. on the disorder I looked over all of the symptoms as I had so many!

The only way to know for sure was to get some tests done (urine test that detects KPU in the urine), some blood tests to see what my nutrient levels were doing and a hair test to see what heavy metals I had in my body. I'm not 100% sure if the hair test is necessary for everyone so just ask your naturopath or health provider.

So my results came back and there it was in black and white... I tested very high (58) to having Pyrrole disorder. My naturopath said 58 is a very high reading and it's no wonder I've been on the edge of what feels like insanity for all of these years.

So Now What?

After getting my results I felt a sense of relief and feeling of hope, for now I had a diagnosis, an actual answer and now I knew I wasn't going bananas and that this condition was completely treatable and the best part was that it was all treated naturally with diet, lifestyle and correct supplementation.

I got on the protocol and started to feel like a different person, I was finally happy and calm again (if I'd ever been happy or calm before I don't know?). I was taking all of the nutrients advised plus I became diligent with my meditation practice and stayed on track with my diet.

Now I don't know what happened but somewhere along the lines I stopped taking my Pyrrole's nutritionals and I let stress creep back in and my diet has always been a little up and down (mostly good but can get bit undisciplined sometimes). And after a year and a half of not managing my condition, let's just say that things started to fall apart...

I look back now to last year when we visited the USA and I was eating poorly, drinking alcohol and had experienced quite a bit of stress travelling (but that's another story) that my gut issues really started to flair up, so much so that I was applying doTERRA DigestZen to my belly everyday just to settle the pain.

Then the silly season began and then January came and went and February I finally decided to get back on top of my health again and try to make friends with Pyrrole's again. After visiting with my naturopath again we concluded that I have been suffering because I'd not been looking after myself and my problem (Pyroluria) and that I was also going through Adrenal Fatigue AGAIN! :(

This was only a few weeks back and I'm currently waiting on some more blood tests but since being back in the protocol I am feeling 80% better and am starting to get some energy back though I've a little way to go...

One thing I've realised throughout this whole process is that health is a JOURNEY and not a destination, for we are imperfect beings and we make mistakes and often we don't realise the seriousness of something until it gets so loud we have no choice but to listen up and take action.

Because of the nature of this illness I had to break this blog up into a series so if you'd like to read the next part to this, then please click over here now. I'll be sharing more about Pyrrole disorder with diet and lifestyle tips.

Disclaimer:

This is not intended as health advice, I am only sharing my personal journey with Pyrrole's. Please see your trusted medical/healthcare provider for diagnosis and treatment.

References:

  • McGinnis, W. (2004). Pyroluria: Hidden cause of schizophrenia, bipolar, depression, and anxiety symptoms. Retrieved from http://www.alternativementalhealth.com/articles/pyroluria.htm
  • McGinnis, W. R., Audhya, T., Walsh, W. J., Jackson, J. A., McLaren-Howard, J., Lewis, A., . . . Hoffer, A. (2008). Discerning the mauve factor, Part 1. Alternative Therapies, 14(2): 40–50.
  • McGinnis, W. R., Audhya, T., Walsh, W. J., Jackson, J. A., McLaren-Howard, J., Lewis, A., . . . Hoffer, A. (2008). Discerning the mauve factor, Part 2. Alternative Therapies, 14(3): 50-56.

Websites:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4471964/

http://www.conqueringpyroluria.com/

https://vitalityandwellness.com.au/blogs/news/pyrrole-disorder


1 comment

  • schellea fowler

    Thanks for sharing Tam…wow what a journey! I hope others can find hope after reading this :)

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