It has been brought to my attention that this blog is not encouraging helminthic therapy, but instead is harming people in posting my experience and the studies I come across.Â My intention was to blog my failure or success with helminthic therapy, as I was one of the first Crohn’s patients to try it.Â It was very exciting at first, when things improved so dramatically.Â I felt I owed the IBD community an honest report of what it is like to try hookworms, since I didn’t have anyone else doing this before me, and would have welcomed what to expect.Â Also, my doctor was very interested in my progress, and it was a way for me to corral the information I came across, so that other people could learn from it.Â It seemed at the time that this was going to be an option for very sick people to get well, and the more I could do to help further this therapy, the better for all those suffering.
But my experience has been so roller coaster-ish, that I don’t know if it’s a good demonstration of the realities of the therapy.Â Although each person is so different, I’m not sure there is a “normal”, perhaps this blog, since there are so few, is a detriment rather than a help to people wanting to seek out information.
I’ve had a lot of positive feedback from people wishing to try this, since they are glad to find an honest report of one woman’s progress.Â I’ve been contacted by CBS, professors, a NY Times reporter, and helminth immunologists, all thanking me for my story, and I was glad to do anything I could to help promote the therapy. I’ve given enough interviews that I think I’ve done my share.Â I also would much rather be known for my business (we’ve started an urban farm and underground restaurant, and are selling flowers and unusual produce to high end restaurants, and will be starting classes on gardening, canning, bee-keeping, chicken raising, etc.) Â But if this blog is harming people more than helping, this hasn’t been my intention.
It’s hard, because there as so few people trying this still, and there is a desire to have a community, to learn from one another.Â The incubation process is a big one – because the founders of the worm companies face such retribution from their actions, they are unable to give guidance as to how to safely incubate and reinfect, and it has been invaluable to me the support I’ve gotten both on and offline from various people.Â That has been the main purpose lately for my keeping up the blog; the sense of community and a feeling of we’re-all-in-this together type of thing.
But if it is keeping people from trying to get well, then it is doing more damage than good.Â This blog has been a side project that has been appealing in that the hygiene hypothesis is being proven, and we are proving it!Â It’s been very exciting to be on the cusp of a whole paradigm shift.
But I’d rather people get well than be frightened by my experience, so I’m contemplating taking it down.
I’m wondering what other people’s opinions are?