Pyroluria and Parasites
"Only in the darkness could I find my light"
I spent most of last year horribly ill...it began suddenly after a lovely visit to the animal farm...a gnawing burn in my stomach, vomiting, fever and extreme muscle fatigue. I say it began that day, but the root of it all really began the day I was born. I didn't know it at the time but I was born with a genetic disorder, one that would slowly but surely start to show itself very soon. I was completely at the mercy of the constant stress I was under, the stress I just couldn't cope with anymore. My immune system was crashing and I was vulnerable. My limit was reached. I was so under resourced as a mother of two young children, completey sleep deprived for 4+ years and trying desperately to adhere to my attachment parenting ideals in a society of isolation and separation. Where was my tribe?
When that first wave of nausea set in I thought I had a regular case of gastro, nothing to worry about. When a few days had passed and I wasn't improving, but rather getting worse, to the point where the stomach burning felt more like a stomach ulcer, I was eventually admitted to hospital. It was highly suggested I had a stomach ulcer and that I needed a gastroscopy. I went home with a prescription of Nexium, some Tramadol for the pain and I waited for things to get better without a clue as to what was happening to me.
A week later I found myself on the floor hyperventilating. I couldn't breathe, I couldn't move from the floor. The anxiety that had been slowly creeping started to build into a giant tsunami that was about to completely overwhelm and envelop me. The room spun and I was about to die, or so I thought. I didn't know it then, but I was having a panic attack. I lost consciousness and ended up in hospital again. The doctors believed that I had either a pancreatic condition, gallstones or something terribly wrong with my stomach. The pieces of the puzzle couldn't be put together and inconclusive test results only confused them more. I had a week of tests - blood, stool, gastroscopy, colonoscopy, ultrasound and only a few abnormalities showed up. Nothing to explain the array of symptoms I was experiencing. I was sent home with lots of drugs and a loose diagnosis of Irritable Bowel Syndrome.
I was at such a loss. I felt like I was losing my mind...and I kind of was. My memory started slipping away from me. Little things, like I couldn't remember my pin number or my phone number. I felt anxious and panicky all the time. I couldn't remember where I was going sometimes when I was in the car, so I just drove back home. My stomach burned constantly and I lost a lot of weight, not that there was much of me anyway. I felt nauseous all the time, just like morning sickness or a hangover that wouldn't go away. I tried to function as best I could. I was lucky to have my mum, my sister and neice fly from interstate and overseas to help me with the children. Time passed, more doctors visits and nothing. As a naturopath I had my suspicions as to what might be going on. I had some insight from a colleague of mine who suspected parasites might be involved. I knew at this point that the mainstream medical system wasn't able to help me on this one. I started to search for alternative pracitioners. I couldn't work this out on my own. My mind was too messed up, full of anxiety, paranoia, confusion, holes. I had no focus. I couldn't cope with even the littlest stress. Everything was a mountain to me. I felt so guilty about how I couldn't completely be present for my children. I was barely living in those early months.
Somewhere about 6-8 weeks after the intial event I found a clinical nutritionist. He was amazing. He confirmed all the things I was already thinking about my health, and it made me feel like hey maybe my mind isn't as crazy as I thought. After the first session he suggested I be tested for a genetic blood disorder called Pyroluria via a simple urine test. He also suggested I be tested for a parasite called Blastocystis hominis (Blasto) using a DNA stool test via Diagnostic Insight (Metamatrix in the US). It's far more accurate than the commonly used culture testing. It's like looking for a needle in a haystack whereas DNA is definitive. Finally some progress. It took quite some time to get results back. And all the time I was struggling. My diet now consisted of very little. I couldn't eat anything that aggravated my stomach, so it was really bland....not to mention boring. Gluten free, dairy free, sugar free, fruit free, caffeine free, alcohol free. I was pretty much on a paleolithic diet. So exciting! Not. So my test results came back positive for Pyroluria and Blasto. I also had a few other parasites and massive yeast overgrowth. Not so fun, but such a major relief to finally know. For Pyroluria the treatment was assumably easy. Zinc and Pyridoxal 5 Phosphate (Activated Vitamin B6). If you've never heard of Pyroluria then you're probably wondering what it is. Simply put it's a genetic disorder affecting hemoglobin synthesis, leading to a build up of pyrroles in the blood that bind Zinc and Vitamin B6, resulting in massive deficiencies of these nutrients. All symptoms experienced are a result of these deficiencies. They range from panic attacks, schizophrenia, inability to cope with stress, depression, anxiety, increased sensitivity to light, sound and smell, hallucinations, anger outbursts, dyslexia, memory loss, morning nausea and a whole lot more. There is also some evidence suggesting that Pyroluria is associated with increased permeability in the lining of the gastrointestinal tract, which in turn only aggravates the condition further by potentially disrupting absorption of Zinc and B6 through the intestinal wall. With the lovely Blasto parasite that had made a home in my body and wreaked havoc on my gut wall, this was exactly what was happening to me. You see I have had Pyroluria my whole life. I know it now, I can finally understand why I suffered from anxiety as a child, and have never been able to cope with the stressors of life the way others can. And why I suffered from Schizophrenic episodes as a child and I'm only now understanding the underlying cause. It wasn't until my digestive tract was so horribly wrecked and ruined by this parasite that the Pyroluria could really show itself to me. My malabsorption became so critical that all those much needed nutrients were completely gone. I felt and was a crazy person for those few months.
My treatment was a little trial and error. The Zinc and B6 only did so much. The real healing needed to take place in my gut. And so it did. But first I had to take a trip to the other side and really screw my body up. Treatment for Blastocystis hominis can be really challenging. Anyone who has had it, or still does have it knows this. It's so hard to beat. It hides away in your gut wall, dormant until the moon is full and it's life cycle has been completed. I would feel better for awhile and then it would come back....with a vengeance. Herbal treatments can be very effective for Blasto. I used a combination of Wormwood, Black Walnut, Cloves and MSM powder - very important for breaking down the parasite's cell walls and defenses so they can be completely eliminated from the body. I also used anti-fungal herbs and nutrients like Pau d'arco, Caprylic acid and Saccharomyces boulardii to combat subsequent yeast overgrowth. Strong probiotics (Bioceuticals Ultra 45) provided me with the most relief. I know it's a controversial point in treating Blasto, as some believe probiotics actually feed the parasite. All I know is they made me feel better, so I took them. Even with all this wonderful natural treatment, the parasites persisted. My immune system was too weak, my internal resources almost non existent and my vitality so low, to fully utilise natures remedies and heal. My symptoms were less and less, but still every full moon they came back. Argh! So very frustrating and it had only been 4 months. I have read stories of people suffering for up to 40 years. My heart goes out to those people and I hope and pray they find solutions. So our next step in treatment was to do the 10 day triple antibiotic therapy. Not readily available and most doctors know nothing about it. The Centre for Digestive Diseases in Sydney is a great resource and support for the triple therapy and can assistwww.cdd.com.au
Success! The triple therapy worked! Finally free of the constant nausea and stomach burning. I was however a complete mess. It was like stripping every healthy cell from my body. I looked grey and I felt even worse. The antibiotics were so powerful. They needed to be so they could kill off the parasites. I felt ok for the first two days, slightly nauseous on day 3 and completely bedridden from day 4 onwards. I felt like I might not make the 10 days. Every time I took another pill I was getting weaker and weaker. My muscles ached and I was completely exhausted. My head hurt all the time. I could just make it to the bathroom and back to bed. It felt as though I could just die if I continued on any longer....sounds a little dramatic I know, but it really was that bad. Finally day 10 and it was over. I slowly built up my system with gentle nourishing food (my paleolithic diet..yeah!) and high doses of glutamine, DGL and probiotics. After a few weeks I started to feel like myself again. I experimented with introducing more grains or a sweet treat into my diet, but it only caused flare ups. I would get crippling intestinal cramps most mornings if I slipped up. My GIT lining was still very sensitive and it took months to fully heal. It has only been recently, about a month ago that I have been able to eat a varied diet again. It has been 10 months in total since my very innocent visit to the animal farm, the place we suspect I was infected with Blasto.
To my great relief most of my food intolerances are not present anymore now that my gut lining has healed. I no longer suffer with intestinal cramps, nausea, or epigastric pain. I am still sensitive to sugar and dairy and if I overindulge I will develop yeast related symptoms. My Pyroluric symptoms are far less severe and well managed with supplements of Zinc, B6, 5- Hydroxy Tryptophan, Gamma Amino Butyric Acid, Inositol, a low grain and nutrient rich diet and avoidance of alcohol. Now when I encounter high stress situations or trauma, I still find myself struggling to cope, and I do have the potential to spiral into panic, anxiety and depression at times. Although it takes me far less time to become aware and accept what is happening, and find ways to nurture myself and come back into balance, knowing it will pass. The path of least resistance.
The real turning point for me was understanding that this journey was about learning how to take better care of myself. It was a journey to better understanding my whole self, and learning to accept and love who I am. To appreciate my uniqueness. Once I started to really love myself the nurturing came and I began implementing stress reducing strategies into my life. These are the life giving, joy producing and healing acitivities that sustain me in my daily life. They include playing my guitar, yoga, swimming, hiring a babysitter to create the time to discover what it is that inspires passion within me, going to the beach and being rocked by the waves, drawing, connecting with like minded people in my community, cooking healthy, delicious food, being authentic, slowing down my life so I can deeply appreciate each moment, expressing and writing just as I am now, sharing all of who I am with the world regardless of the judgements of others or myself. I do this in the hope that by sharing my experience it will in turn help someone else feel that they are not alone and perhaps even inspire them to love and accept themselves more and take that step towards better health.
- Follow my blog - Life of a Pyroluric
- Pyroluria - A Hidden Disorder
Detailed information about Pyroluria - symptoms, assessment, treatment options
- Facebook Pyroluria group
A place to share experiences, gain knowledge and support from like minded individuals
- CDD - The Centre for Digestive Diseases
For information regarding the Triple Antibiotic therapy, devised by world reknowned expert on Blastocystis hominis and parasites, Prof. Thomas Borody - gastroenterologist and medical director of CDD.
- Diagnostic Insight - Australia
Diagnostic Insight laboratory is equipped with state-of-the-art systems and instrumentation and are staffed by highly qualified and experienced personnel. For a comprehensive gastrointestinal profile via DNA stool analysis.
- Metametrix Clinical Laboratory - USA
For a comprehensive gastrointestinal profile via DNA stool analysis.
- Blastocystis hominis
Blastocystis hominis is the most common protozoal parasite to infect humans. Discovered in the early 1900s it is vastly misdiagnosed due to controversy surrounding its pathogenicity.