15 Jan Healing Pyroluria… Part 1
It’s taken me a while to write this. Partly because it’s been a challenge getting my head around it. Partly because I got distracted by Christmas (who didn’t???), but mostly because I’ve been procrastinating about it. To be honest, I wasn’t sure what to say.
It started around this time last year. We’d had a very stressful couple of weeks, which resulted in feeling very run down afterwards.
And then it set in. Aching, bone crunching, soul sapping fatigue. The likes of which I hadn’t known for many years.
Now, if you’ve followed my blog for a while or done one of my programs, chances are you already know I have a history of suffering from adrenal fatigue. But through a gluten free, sugar free, dairy free diet (and often taking it to the level of being paleo), regular yoga, gentle exercise, and some counselling, I found my path to healing.
I thought I was fixed
And I kinda was. Except I didn’t realise that all my good work so far was really only a band-aid solution. All it took was a couple of weeks of intense stress, and I was going backwards. Fast.
Never mind, I thought. I know what to do. So I took some adrenal herbs, got stricter with my diet, and powered on through life.
And it worked temporarily. I bounced back and released my signature program, Shiny Healthy You (ironically a program about… you guessed it… fatigue!) and basked in its success. I received tons of awesome feedback from clients who had done the program.
It felt good to help so many people. Yet my own health setbacks made me feel like a fraud.
Here I was, dishing out advice on fatigue, only to be suffering from it again myself. But I was managing it ok. I didn’t hit rock bottom. But as soon as I had a busy month at work, I felt worse again.
I felt tired every moment of the day, I felt like I was walking around in a fog, and I just couldn’t think straight. Was I suffering from depression? Was it all in my head? I was feeling so frustrated.
Then I started to read about Pyroluria
Also known as kryptopyrroles or pyrrole disorder, it’s an inherited condition where the body makes too much of a substance known as pyrroles, during the everyday production of haemoglobin. These pyrroles bind to your vitamin B6 and your zinc, causing these precious nutrients to become excreted rather than absorbed. Eventually the condition manifests as a serious and long lasting zinc and B6 deficiency.
Signs and symptoms are many and varied, but here’s a few of the more common ones:
- Lowered immunity
- Poor quality hair, skin and nails
- Brain fog
- Mood swings and anger
- Depression, anxiety and nervousness
- Leaky gut and food allergies
- Fungal infections and candida
- Hormonal imbalances
- Feelings of being overwhelmed
- Joint pain, especially knee pain
- Abnormal body fat distribution
- Poor dream recall
- Poor tolerance to light and sounds
- Migraines and headaches
- Lack of hunger or nausea in the mornings
- Skin that burns easily in the sun
But the one I was most interested in was the inability to cope with stress. In fact, the body makes more pyrroles during times of stress, meaning that you end up experiencing even more of the above symptoms.
Not only that, our good friend zinc is also responsible for keeping copper levels in check. Low zinc = high copper. Have you ever looked up the symptoms of copper toxicity? They’re freakin’ SCARY, that’s what. Along with the poor immunity, brain fog, predisposition to fungal infections, various skin ailments and fatigue come the mental health issues. I’m one of the lucky ones, only experiencing anxiety and depression. Experts are now connecting Pyroluria to schizophrenia, Down’s Syndrome, autism, ADHD, bipolar disorder and alcoholism, and it’s most likely due to copper toxicity.
The more I researched, the more I started to freak myself out (a common problem when you’re a health practitioner – you know where to look for the good quality information, and in the process you can often scare the pants off yourself, thinking you have this disease and that disease). I discovered that high levels of pyrroles can be connected with arthritis, irritable bowel, heart disease and even cancer. It was time to take action to find out for sure. I needed to get a Mauve Factor (kryptopyrrole) test.
One urine test and $120 later, I had my answer. The results were off the charts. The reference range was 1-10 and I was sporting a whopping 45! (I don’t do things by halves, it seems!)
No wonder I’d been feeling like shit.
It all made sense now. The fatigue. The food intolerances. The up-and-down symptoms. The candida. The endometriosis. The PMS. The inability to deal with stress like a “normal” person. The fact that a paleo diet only seemed to do half the job.
I finally had my answer. The relief was immense, to say the least.
Rather than decide on the treatment myself (never a good idea!), I put myself in the hands of Dr Rach, a practitioner whom I trust implicitly, since she’s both a GP and a naturopath (the best of both worlds!) and more importantly, a wise and caring individual who has seen and treated many pyrrole and adrenal fatigue patients. She has a special interest in this stuff. She sent me off for further testing.
My copper levels were high, my zinc low, and also my histamine levels were elevated, which meant I was “undermethylating” (more about that some other time).
I began taking large doses of zinc citrate and P-5-P (these are specific forms of zinc and B6 that are better absorbed), supported by magnesium, evening primrose oil, and a clean diet (no problems with that last one, haha!).
Note: I’m deliberately NOT mentioning the amounts of B6 and zinc here, as everyone’s needs are different. You should always get your own case assessed before attempting to take such large doses, as they may be toxic in a person who doesn’t have high copper or Pyroluria.
At first, I felt nauseous from the zinc, but it settled down after a few days, and pretty soon I started to notice a change.
The fog started to lift.
I had energy to burn for the first time in ages.
I could actually get out of bed in the morning without feeling like I’d been hit by a truck (apologies to anyone out there who’s actually been hit by a truck – I’m sure it’s MUCH worse…).
I experienced a clarity that I hadn’t felt in a very long time, if ever. I suddenly had an attention span – a handy thing to have when you write blog posts for a living.
I’ve even had a couple of months now with very minimal PMS. And boy is my husband happy about THAT!
Since then, my progress has been up and down. As your zinc levels come up, the body can begin to release its stores of copper, and when this happens, you can go backwards in your recovery for a few days or even weeks. I’ve been eating clean, juicing, keeping my water intake up, doing yoga, and focusing on activities which will encourage my body to detox the copper swiftly and efficiently. Even so, my recovery can best be described as “2 steps forward, one step back.” I have good days and bad days, but the good days are amazing, and the bad days are slowly becoming less.
The wonderful thing about this experience is that, now that my own health is back on track, I have the most current information and tools required to help others deal with this condition. I also have the personal experience of knowing what it’s REALLY like to have Pyroluria. I’ve got inside information. That stuff is priceless. It helps me to help you.
I’ll keep you posted on my progress. I’m learning more about the condition all the time, and I will be doing my best to put information together for you in a way that’s easy to understand and implement.
If you’re interested in getting a Pyroluria test in Australia, contact me at hello[at]julesgalloway.com and I will point you in the right direction. Or click here to work with me via Skype.