Last week was a big week for my friends the helminths. They got some great PR when Scientific American published an article about the use of parasitic worms in treatment of autoimmune disorders. Then, NPR picked the story up, giving this treatment even a little more mainstream exposure on All Things Considered on December 2nd. (Thanks, by the way, to everyone who contacted me to let me know they heard about the worms on the radio! That was awesome to know that so many people have been keeping their eyes and ears open on this.)
What was really cool about these stories, from my point of view, is that the subject was an ulcerative colitis patient who treated himself with whipworms. This is one of the few people I have heard of who have my same disease and used the same treatment I am seeking. In fact, the company I am working with on this tells me I am probably going to be patient number 25 or so. (Notably, one of those folks is a fella who writes the Colon Comrades blog. I encourage you to check it out.)
So often, research and new treatments for IBD involve Crohn's disease first, and those of us with UC are left to extrapolate results from there. Truth is, although related, these are very different diseases in ways we don't quite understand yet. Of course, Crohn's is so nasty that if I had to choose, I would definitely stick with UC, but still, I feel like a little left out sometimes when it comes to attention to my own ailment.
Also of interest are the findings of the researcher, P'ng Loke. Basically, he describes the function of the whipworms as catalysts for ramping up mucus production in the colon by stimulating production of interleukin-22 (IL-22), while suppressing an inflammatory molecule, interleukin-17 (IL-17.) That's a little bit different than the descriptions I've heard, stating that whipworms give your immune system an appropriate invader to focus on, rather than attacking itself. Also interesting about this study is that it looks like the worms affect the areas of the colon where they take up residence, but not necessarily the colon as a whole. I have what's referred to as "left-sided" colitis because it's in my--you guessed it--left side, so I sure hope the little fellas will know exactly where to go!
No doubt, I am fascinated by all this stuff, but when push comes to shove, truth is I want to just forget I've ever heard of ulcerative colitis, if only for a little while. That's why I'm really excited to get my treatment with whipworms. Late last week, John and I booked our tickets to pick up my worms on January 6th! Given that the treatment can take about 8-10 weeks to work, I am hopeful that by my next birthday on April 8th, I will be seeing some improvement. Just in time for spring running season! Sweet!
Lots of people have warned that I may not see full remission from this treatment, or even any results at all. That's why I've tried to keep my expectations under wraps a little. I am hopeful that I can significantly reduce my meds, starting with prednisone, then maybe Remicade, and hopefully also azathioprine. And I'd love it if my symptoms got just a little bit better. If my mornings were not such a roller coaster ride of several emergency trips to the restroom. If I could actually enter a public place without immediately noting where the restroom is. If I could stop having in the back of my head the possibility that I will spend at least one day a month bedridden from fevers, chills, abdominal cramps, etc. Does that seem like so much to ask of my wormy little friends? I think not!
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