Bleak prognosis for MCTD patient is reversed by hookworms
In 2017, I was 57 years old. I was an extremely fit and active person. I went to the gym 3 times a week and ran several times a week. My running was up and down steep hills. At the time, my only health issue was Raynaud's phenomenon.
At the end of 2017, my partner Suzanne and I moved from Christchurch, New Zealand, to the central coast of Australia with the intention of settling there permanently. After being in Australia for a few months, I noticed that when I woke up, my hands were swollen and tight, and I wasn't able to straighten my fingers. As the day wore on, my hands would loosen up.
After a few weeks of persuasion from Suzanne, I finally went to the doctor and was sent for a blood test. This showed ANA in my bloodstream, so an appointment was organised with a rheumatologist.
The rheumatologist said he thought he knew what was wrong with me but would only give me a name once he had done more specific blood tests. This was very frightening to hear.
On my return visit to the rheumatologist, Suzanne and I were stunned to hear I have an Autoimmune disease called Mixed Connective Tissue disease (MCTD), a crossover of rheumatoid arthritis and scleroderma. Both of us knew of rheumatoid arthritis, but neither of us had ever heard of scleroderma.
The rheumatologist's description of MCTD and the trajectory of the disease was frightening. No cure and no improvements; the only hope was possibly going into remission for a time. He also told me that a large percentage of MCTD people have Raynaud's phenomenon as a first symptom, even though a high percentage of Raynaud's sufferers don't go on to get an autoimmune disease.
My health went downhill quite rapidly. I had extreme fatigue. If I exerted myself, I had breathing difficulties and heart palpitations. I was in constant pain from rheumatoid arthritis.
Suzanne and I had purchased a house just prior to my diagnosis. The house needed a total renovation, which Suzanne and I intended to do ourselves. It was a real struggle for me to get up every day and work on the house, usually only managing an hour or two before being exhausted. The rheumatologist prescribed hydroxychloroquine, which helped me get through the days.
It was one of the most difficult times in my life. I was still in disbelief, and I felt very depressed, especially after being so very fit and active. To say this changed my life is an understatement. I did not feel at all positive about my future.
We were lucky to have a builder son-in-law who came over from NZ with workers and helped us with our house. A small light in a very dark tunnel.
Suzanne and I decided to move back to NZ. We wanted to be closer to our family at this difficult time. I was offered a manageable job with part-time hours.
We initially bought a two-story townhouse, but after a few months, we realised that was a mistake, as I avoided climbing the stairs to the bedroom level. So, we decided to move to a single-level home.
In late 2021, Suzanne watched the "Sunday" show featuring helminthic therapy for treating autoimmune diseases; Jane Puckey and Lynn Jolly talked about how helminthic therapy had helped them. The research at the Malaghan Institute in Wellington also showed some promising results. It did seem extremely unusual to us, but we were desperate for any help at this stage. I joined the helminthic therapy support group on Facebook. I did a lot of research and asked questions of the other members. Others told me of their positive results, and I thought, "What have I got to lose?"
I obtained some helminths [Necator americanus] and did my first treatment in January 2022.
After about 6 months, there were small signs of improvement. My pain was slightly less, and my lung function test showed a slight improvement (which was unusual). I started to work 4 days a week, something I couldn't have considered 6 months before. At about 9-10 months, I noticed I was walking faster; previously, I had often asked Suzanne to slow down, and now I was walking faster than her. One day, near the end of a walk, I felt pretty good and decided to jog the last block to home, the first time I'd Jogged in 5 years! Since then, I've improved every week, running around our local park a few times a week. At 12 months after my first helminthic treatment, I started doing light weights and cardio exercises; 20 minutes turned into 40 minutes, which have now turned into hours of training.
Every week, I am making small improvements, and I feel less and less pain. 14 months since my first helminthic treatment, I am almost pain-free. My breathing and recovery time after exercising is improving weekly.
Even though I have a way to go, for the first time since the beginning of this journey, I feel optimistic about the future and believe I have one. My life has changed dramatically again, but this time for the good. We have just booked a seven-week trip to the UK, including a two-week cruise around the Mediterranean, something I would never have considered in the past five years.
We spread the word to anyone we hear of who has autoimmune diseases. Interestingly, it is incredible how many people immediately go into a "yuk" response and say they would NEVER try them. Some of the people with this reaction have severe autoimmune diseases that are ruining their lives. We hope that with more understanding and acceptance, this reaction will change.
I’d like to thank everyone involved in the Helminthic Therapy Support Group for spreading the message about hookworms and supporting people with autoimmune diseases. And lastly, thanks to our friends, Necator americanus.
By Richard, January 2025.