"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.
Heather Rae on May 22, 2017:
Aperiomics and Viome can identify non-human DNA (eg, parasites, bacteria, viruses, yeast/fungus) so you don't have to hunt for the needle in a haystack.
sw188 on September 23, 2016:
I posted as sw168 over a year ago, but can't access the same account now. Anyway, just wanted to add some interesting updates: I finally got tested for blastocystitis and was indeed positive! I went on antibiotics and also an anti-parasitic medication in rotating cycles for many months. Some of my symptoms have improved, but I'm still having lots of problems. I also have Hashimoto's thyroiditis which could account for oscillating bouts of fatigue and anxiety. I also just learned about something called "post-tubal syndrome" which causes a range of hormonal imbalances following a tubal ligation (aka "tubes tied" or "sterilization"); this could also account for some of my issues like my hair falling out at age 40 and extremely painful periods (around the full moon). Just wanted to add this information in case it's helpful for anyone else. Find a doctor who will check for parasites and you just might come up positive for Blasto - I did! Even though I suspected it after reading this article, I was still surprised when it was confirmed. Just be warned that doing the stool test was one of the most unpleasant things I've ever done - and I'm a mom! I still haven't found a doctor who will check for pyroluria, but there are tests you can order yourself online and mail the urine sample back to the lab - so you can get that checked/confirmed. You can also get your thyroid checked, but educate yourself some first - most doctors will only check TSH which doesn't give a complete picture of what's happening. When I finally convinced a doctor to check my thyroid antibodies, it became clear I have Hashimoto's. I still would not know this if I hadn't keep asking (insisting) on the antibody test. And if you're still having problems, check into adrenal fatigue (there's a saliva test you can do but most doctor's won't even look at it; they don't take it seriously at all). Or if you've had your tubes tied, look into post-tubal syndrome. Interestingly, in women the thyroid, adrenals, and ovaries are all related to each other, meaning a problem with one could cause malfunction in the others also. Maybe getting my tubes tied was the dumbest thing I ever did and the thyroid problem developed years later as a result. Bottom line: always keep trying to help yourself, even if your doctor won't listen.
Alex on September 18, 2016:
Thank you for posting. I have tried one triple antibiotic therapy and now on my second it looks like the first antibiotic triple therapy made things worse as the test indicated it has grown in numbers.
I am on the second dose and man are the antibiotics strong! Finishing them in 3 days and looking forward to retesting. Any natural supplements that seem to work?
Pad on December 29, 2015:
Thanks for posting. After one round of antibiotics (flagyl) im on the three types of antibiotics for a total of ten days. Currently half way through and hoping for the best. Ive been fighting the tiredness, mindfog and a small amount of anxiety for years. Reassuring to see a lot of my symptoms match the ones you listed - and are indeed linked to blasto.
Linda Montogmery from Bangor, Northern Ireland on October 28, 2015:
Natural minerals weight out it seems the majority of the time. Friendly bacteria and being balance is important.
sw168 on April 07, 2015:
Thank you for sharing this story; it helps so much! After reading this, I realized I too became ill after visiting some farms (as part of my job). I had not make the connection until now. This also explains why I feel worse around the full moon! All the doctors I have been to and all the time I've spent trying to figure this out... I never made these connections.
I want to avoid antibiotics as much as possible; I'm concerned the herbal remedies were not strong enough.
To Mike - how did you know when the bio-resonance had worked for your son? Was it obvious when the parasites were gone? I'm just wondering how would someone know when they've had enough treatments?
To Mina - it's very interesting that you get healthier in Europe and sicker upon returning home. I definitely understand the concept of what you think is causing it, but something just doesn't add up to me. I've never been able to make any sense of the "big pharma wants everyone to be sick so they can make a ton of money off them" theory because I keep wondering who will work when everyone is sick? Won't all the employees of big pharma get sick too? That part just doesn't make sense to me.
Jade on January 20, 2015:
I have recently been diagnosed with Pyroluria and found that I also had high levels of B.Homis. Been sick for over a year and a half after being misdiagnosed numerous times. I am now on my second last day of the 10 day treatment from The Centre for Digestive Diseases and I cannot wait to finish it.
Thank you for sharing your story and bringing hope to many other people who read it along the way :)
Sebastian on November 24, 2014:
Mike: so you dident try antibiotics then?
Natural insight: did you take probiotics during your triple therapy or after?
Mike on June 29, 2014:
Our son had a gut parasite (dientamoeba fragilis) for 2 years. We tried everything natural, and then resorted finally to antibiotics, which all proved ineffective. Finally we turned to bio-resonance. 5 treatments killed it off. Then we rebuilt his gut with coconut kefir milk (homemade). He's now DF free, and doing fine. Definitely something worth looking into, because we managed to avoid the nasty anti biotic treatment, which for a 3 year old is a really bad idea.
mina on March 22, 2014:
Hi I am here to let you know that all this allergadults e planted in all food items to create that effect on the public. The goal is to make everybody sick since healthy citizens don't generate $$$$$. As we all know by now pharmaceutical companies are in charge of the food supply in usa, this are the companies who manufacture all the drugs your Dr gives you. As a company is in their best interest for citizens to be sick.
I travel back and forth from Europe to USA due to my work. At times I need to stay up to a year in Europe, well all my food allergies, leaky gut and high chlesterol are 100% gone! I even tested for food allergies in Europe and shows that I am not allergic to anything. The moment I set foot on USA soil all my health problems come right back full force, also went to an allergist here and tested positive for almost all food items.
The situation is way worse than most people know it. Perfluoroalkyl acids, such as PFOA and PFOS through drinking water, dust, food packaging, breast milk, cord blood, microwave popcorn, air and occupational exposure, carpets, clothing, utensils, cookware.
Is known to increased LDL cholesterol levels in teenagers and adults animal studies have identified the liver as the primary organ affected by perfluoroalkyl acid exposure, with potential effects in humans including alterations in cholesterol levels. Immune system problems, thyroid problems, cancer, just Google this and you will find out the truth about what has been going with this chemical planted on the food supply and which government is doing nothing about it.
L on September 02, 2012:
I wanted to thank you for posting this, as I have had a strikingly similar experience to what you described. I also tested positive for Blasto and IBS after being severely sick for an extended period of time: roughly 2-3 years. During this time I was extremely fatigued, could barely handle the slightest stresses, had fever which came and went, depressed, lonely, frequent anxiety and panic attacks, frequent night terrors, ect...
Doctors were puzzled, some thought I was actually making it up, and I was really forced to find solutions on my own. I came across Jackie's website about the triple anti-biotic therapy as you describe, although I was unable to get access to it as no doctor in my vicinity would administer it. I was able to get a doctor to prescribe a month's long prescription of Flagyl while taking an accupuncture herbal formula which had successfully treated blasto in the past.
I have subsequently been tested for the Blasto twice with negative results although, I still suffered from digestive complaints, fatigue, inability to sleep well, food intollerances, ect... I then came across an IBS site that claimed taking glutamine and peppermint oil before meals greatly helped reduce symptoms. I tried it and it worked.
Now I'm finding that glutamine and vitamin B6 have a lot of co-enzymatic actions, and it would not at all surprise me that I too have Pyroluria. I've had sleeping problems ever since I was a small child as well as anxiety and frequent depression episodes (it runs in my family), dyslexia, cognitive disabilities, and so fourth... I think pyroluria may be the primary culprit!
Your body is an amazing healer and can heal ANYTHING... but you first have to understand and pinpoint the underlying cause which can take you on many dead ends but... you will get there. It is truly amazing how powerful your body and mind are and how important it is to think positively. You become your thoughts.
I am 2/3 better now and am sure I'll make a full recovery and feel better than before this all started, largely thanks to your post and opening my eyes to Pyroluria.
Carly on June 10, 2012:
Thank you for sharing your story on pyroluria and parasites, Unfortunately my story is the same as yours and my symptoms first started when I came back from Europe.
I was diagnosed with lactose intolerance through a gastroscopy back in Sep 2011 as i developing chest pains, reflux and lethargic.
I then started clean eating in Dec 2011 and felt great I had soo much energy and never felt better.
Then April this year I had what I thought was a gastro attack..couldn't digest anything, reflux, vomiting, constipation.
After countless blood tests, stool samples and ultrasounds my results came up with nothing :(
My health started to deteriorate even worse apart from not being able to digest anything I then started to have anxiety attacks, short term memory loss, depression, mood swings and chronic fatigue.
I finally ended up seeing a Naturopath who after doing a live blood test said I had a parasite and leaky gut, she nded up putting me on a combination of herbal remedies which I have to say helped rebuild my stomach.
After 2 months I could finally digest fruits, some grains but no nuts.
Although my brain fog and chronic fatigue only seemed to get worse, I then had my gastroscopy and colonoscopy on Friday which confirmed that I had an intestinal worm and inflammation.
I'm still waiting for my results from my tests which i will get back this Friday as to what the inflammation is (hopefully they can tell me what type of worm it is as well)
But in the mean time I have now been put on Parex and Ultraprobioplex from Metagenics, flaxseed oil, Zinc Complex from Ethiecal Nutrients and also now following my blood type diet, although I have only been on this all for 3 days I am starting to notice a difference :)
I'm still waiting for my Pyroluria results from my specialist, but for now this is working.
Do you think everyone that has parasites should have the 10 day antibiotics?
Also how can you tell that the parasites have all gone?
Sorry to bombard you with so many questions but this is all new to me and I just want to get better..or at least feel semi normal again lol.
Harry777 on April 14, 2012:
It sounds like your ideal was very similar to mine. After years of brain fog and chronic fatigue I was diagnosed with Blastocystis Hominis, I did the triple antibiotic therapy (not fun) and tested negative for Blasto afterwards. Only problem was that I still felt awful...
Then I found out I had Pyroluria and this is what really brought my health back. The supplements have been a real life saver.
It looks like you don't take manganese. I would highly recommend you start. People with Pyroluria have low manganese and then taking high dose zinc further depletes manganese. I reduced my manganese recently and started getting symptoms again, mainly brain fog and a skin rash.
Natural Insight (author) from Western Australia on February 05, 2012:
Thank you! It's been 2 years now and I'm very well :) I still need to manage my pyroluria with the correct supplementation, include daily stress management techniques, and follow a healthy balanced diet. If I waiver too much I have an exacerbation of symptoms - mostly anxiety and a feeling of overstimulation of my nervous system, followed by complete brain fog, fatigue, aching muscles.
hecate-horus from Rowland Woods on February 04, 2012:
What a horrific ordeal! I'm glad you are on the road to recovery. Thanks for sharing your story. Voted up!