ForJane Puckey, being diagnosed with scleroderma, an autoimmune disease, was scary and debilitating. She struggled for years to lead a full life, before a chance discovery changed everything.
OPINION: I wish I could say I was brave, but when the specialist told me I had scleroderma I immediately went into shock. I cried. I knew instantly what that might mean and I was frightened.
The night before, I’d Googled my symptoms – a constellation of issues including hardened skin, Raynaud's syndrome and reflux – and Dr Google had landed straight on scleroderma. I remember reading one line that said the disease could turn you into stone. I shut my laptop with a snap. The specialist didn’t window-dress it either, giving me a dire prognosis of failing lungs and kidneys, disability, and possible death. I’d always felt lucky to be a nurse, but I didn’t that day because I truly understood what this diagnosis might mean for my life. The news felt visceral, like a body blow; not many autoimmune conditions are fatal, but I knew this one could be.
Scleroderma is a rare, chronic autoimmune disease that leads to the tightening of the skin and connective tissues, due to an over-production of collagen. I have the more serious type – it's systemic, and can affect internal organs in dire ways.
The doctor gave me the option of going on Methotrexate, an immunosuppressive drug that he estimated might improve my odds by 50%, not of cure but of containing it to a milder disease. I grasped it with both hands, 50% felt like a lifeline and mild disease a gift.
It was 2010 and I was 47 years old with a husband and two young boys at home. I didn’t feel brave, but I did feel determined to live my best life. I also went on Prednisone to treat inflamed and weak muscles, because it turned out I had arthritis and myositis as well. Methotrexate did exactly what the doctor said it would; it didn’t cure me, but scleroderma didn’t progress like it might have without it.
I had always loved exercise and adventure, and I tried to carry on with snow skiing and tennis. I remember driving up Tongariro to Whakapapa ski field with my friend and she was quite worried about whether I should be doing this. I explained that if I didn’t get cold (scleroderma makes you very vulnerable to the cold) or have to walk uphill I’d be fine. I explained this as we drove up the huge snow-topped mountain, and I still remember her face – she was aghast! Well, that was sadly the last time I went skiing as I realised I was putting everyone at risk, both me and my potential rescuers. I really did not want to be that person on the stretcher coming down the mountain. Tennis went the same way. My total exhaustion after a feeble attempt to play would confine me to the couch for days afterwards. Then arthritis snapped a tendon in my wrist which completely ruled out tennis.
Eventually my husband Roger and I took up dancing which was ideal as we could stop every minute or so to listen to the teacher and there were no hills or icy breezes.
A miserable cycle
Over time, Methotrexate began to cause liver problems. I tried many different drugs with no success and horrible side effects, and my doctor took me off them all. Prednisone was great; it gave me thin bones, but also allowed me to escape the couch, so that it was a price I was prepared to pay. Flares of weakness would mean that my Prednisone dosage would go from 5mg to 30mg a day. Then, due to a risk of kidney failure, I’d have to wean back to 5mg. I was in a continual cycle of flares every three months for eight years.
Alongside my attempts to find relief from conventional medicines, I tried Ayurvedic medicine, homeopathy, naturopathy and acupuncture, with no noticeable results.
Then my life changed. I found an article on a New Zealand woman named Lyn Jolly who said she was in remission from lupus, a similar disease to mine, from taking therapeutic hookworms.
The ancient connection between hookworms and humans
Hookworms are tiny roundworms which can enter humans through the skin. They then make their way through the body before living for several years in the intestine. Scientific research into their therapeutic use began about 50 years ago, and is yet to be formally recognised by conventional medicine. But I was intrigued. I’d watched a documentary about the people in jungle areas of Boliva – researchers were attributing their good health and lack of Alzheimer’s in old age to the existence in their bodies of hookworm and other helminths. I even checked out how to buy them at the time but wasn’t confident enough to order them.
I tracked Lyn Jolly down and she sent me information on a social media group of helminthic self-treaters. There were thousands of people doing this all over the world! They had created a huge database of personal stories and scientific research. I read their stories of remission late into the night. They were deeply moving, and I was also impressed by the science, which made perfect sense to me. Humans had always lived with helminths in our bodies, which are like a larger version of the microscopic bacteria, fungi, and viruses which continue to live in the microbiome in our gut. But in most modern cultures, sanitised living standards had wiped the hookworms out.
In the eight years since my diagnosis, nothing much had changed for me; I was weak as a kitten, living on steroids and had declining lung function. I had nothing to lose. I managed to procure some helminths online (the treatment is not regulated in New Zealand). Some people wait a year or longer to feel results, but within five weeks of taking my first dose, I noticed I had more energy and my skin had softened a little. Soon I started weaning off steroids which took around 18 months to come off completely. I never had another flare of muscle weakness again.
I have been taking small regular doses of therapeutic hookworms and whipworm for seven years now and every year I get more energy. I feel as if I’m aging backwards. My lung function has gone from around 76% to 95%, and I play pickleball two to four times per week. It is a pure happiness each time I play, as only those of us who lose and regain the pleasure of movement, can know.
I often wondered why nobody had written a book on this amazing therapy but then I thought, if not me, then who? I wrote Hooked on Gut Health to try to spread the word, to explain the science and to give hope to those facing chronic autoimmune conditions, eczema and allergy. I now help others in their helminth journey, and it is a joy to me to see the profound progress they make.
Hooked On Gut Health: The Truth About Autoimmune Disease and How To Heal, published by BiomeOra, is available now.
This article is not intended to be read as personal medical advice. If you are concerned about symptoms or an autoimmune disease, please seek advice from a qualified medical professional.
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