Thirteen years and counting: maintaining remission with TSO for Crohn's and IBD-related (non erosive) arthritis
Many failed medical treatments over two decades lead to surgery
Having Crohn’s disease since the age of 12, and IBD-related arthritis since my mid 30s, I have tried all the medical routes and nothing worked to maintain remission. I had to have surgery to remove two thirds of my large intestine in my early 30s.
I kept searching for a solution, and, finally, in 2004, I discovered the helminth research of Summers, Elliott and Weinstock. [1] The theory of the hygiene hypothesis and the need for biome reconstitution [2] made sense to me, as did the mechanisms that helminths use to temper and moderate the immune system. [3]
With a history of antibiotic use, prescribed to me as a child for sore throats, ear aches and colds, it made sense that my gut biome could be vulnerable to autoimmunity. It also made sense that the years of exposure to volatile organic compounds (VOCs), from the new and renovated homes that I lived in as child, could have overstimulated my immune system causing the perfect autoimmune storm.
A flare threatens more surgery, and helminths join the therapy team
In 2005 and 2006, I was ill again, and needed to take 60 mg of prednisone and 250 mg of azathioprine daily, but these were not working, and the GI doctor was pushing for more surgery to remove what remained of my colon. Fortunately, just in time, I found a company (now named Tanawisa [4]) that had recently begun selling pig whipworm eggs (Trichuris suis ova, or TSO).
I took the research to a different GI doctor who, fortuitously, was already following helminthic therapy research, and he agreed to monitor me while I tried helminths. His exact words were, “it’s worth a shot.”
I started taking 500 TSO every fortnight in October 2006 and, at the 6 week mark, things started to change. The first noticeable improvement was my mood. Although, physically, I was feeling awful, mentally I felt a sense of calm and happiness, for no apparent reason. This uplifted mood change is known to those who use helminths as “The Bounce”. [5]
The worms begin to work their magic
I was afraid to hope, but symptoms began to lessen, and I knew something positive was happening. My daily bowel movements reduced, stools began to firm up, less gas, less gut cramps and less pain. I kept a chart to measure symptom changes.
By December 2006, I was feeling amazing, and I continued to improve steadily as I weaned off the prednisone, and then the azathioprine. I began going to the gym and lost all the prednisone weight and started to develop muscle. At the time, I was in university and my colleagues were amazed at my transformation.
At different times, I have used the hookworm, Necator americanus [6] and the human whipworm, Trichuris trichiura, [7] but have found the most gentle helminth for me has been the eggs of the porcine whipworm, Trichuris suis. [8]
Helminths saved my life and they continue to do their work maintaining my remission after more than 13 years.
By Tracy Cu, 2019.
Year 17 update
I had my yearly GI appointment today where my doctor was impressed with my Calprotectin stool test, which measures gut inflammation. My score was a wonderful 29! The lower the score the better. My gut inflammation level is better than a normal healthy person's gut, according to my doctor.
I have now been maintaining remission for 17 years using only helminths - NO other standard medical treatments needed, although I do watch my diet and avoid chemicals in my environment. (Sept 2023)
Video interview
In this 1 hour video, Tracy talks to Ben Adams about her helminthic therapy experience.