This Blog

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.  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.  It was very exciting at first, when things improved so dramatically.  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.  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.  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.  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.  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.  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.)   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.  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.  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.  This blog has been a side project that has been appealing in that the hygiene hypothesis is being proven, and we are proving it!  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?

  1. Luke’s avatar

    Your blog was one of the first I read that made me realize this whole helminthic thing wasn’t just a scam. Reading about your experiences as someone who is not tied to any company, helped me to be confident in my choice to try my first dose of hookworms.
    People should know what they are getting into and your blog provides that information. Keep it up!

    Luke

  2. Mike’s avatar

    Like Luke, I too came across this site early on and it helped “normalize” the idea of helminthic therapy. It is a wealth of resources that I think is highly valuable.

    It’s important that there is criticism, and I’m glad you post much of it. People should realize that helminths are not a complete cure-all, and are still very experimental. At the same time, perhaps it would be beneficial to try to post or at least link to stories of people having success, because I’m beginning to see many success stories pop up in other places.

    I do admit that sometimes your blog can be very distressing, which is not necessarily a bad thing, but has certainly given me pause for trying the therapy. Like I said, perhaps try to balance your personal struggle with helminths and IBD with encouraging information as well.

    I can understand why you’d be worried about leaving the site up, but please, leave it up!

  3. Jerry’s avatar

    Your website has been very honest. I am still willing to do this for my chronic fatigue, fibromyalgia, allergies and all my other autoimmune stuff. I just know I have to be ready and not plan a big event or trip when I try these.It gives me a worst case scenario which is always helpful. Since there are other positive stories, it is good to have variety . Keep writing! Thank you!

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