¡feliz cumpleaños comrades! – one year of helminthic therapy.
One year ago I sat nervously holding a tiny vial of microscopic whipworm ova. “Just drink them,” I told myself. I had gone this far, no looking back now—right? This was the final moment, months of research up late at night, anxiety over a new highly experimental therapy—my mind switched back and forth between excitement and doubt. I tried to imagine what life would be like without IBD, without the specter of sickness haunting me daily. In the previous five years, not a single day had gone by where I didn’t have to deal with being chronically ill. Even at my best, I still thought about it every single time I went to the bathroom. I worried everyday about what would come out of my body. I worried about it every time I sat down to a meal, wondering if I’d eat something that would aggravate my intestines. Each morning in the bathroom would determine my day—would it be a ‘good’ day where I could mostly go about my daily life, or a bad one, spent worrying about where the nearest bathroom is, stashing toilet paper under my car seat for emergencies. The most difficult part of having IBD is the invisibility of it–to almost everyone I appeared healthy and (usually) happy, and trying to negotiate the symptoms of my disease with that of trying to live a normal life was often exhausting and stressful. It is no secret that people with IBD often suffer from anxiety and depression, in addition to the physical difficulties and pain, and I was no exception.
Staring at the vile of whipworm ova, I knew it was the right thing to do. I had spent so many months and late nights researching this therapy, making sure it was safe, or at least safer than the drugs I was taking. The doubts remained, but I was ready. I said some kind of prayer, even though I’m not religious, and tossed back the solution of ova. No reaction, nothing. I watched some TV to ease my mind, and went to sleep.
Fast forward one year to today, and I’m in the best shape I’ve been in since my teenage years. I’m exercising every week, biking and running. I’m eating almost whatever I want (although still eating healthy) and have even almost gone through an entire bottle of Sriracha chile sauce. Most importantly, I’m having totally normal bowel movements. I’ve literally even invited people into the bathroom to look at my stools they look so good (oh the poor people in my life). My bloodwork is coming back normal, my C-Reactive protein is < 0.1 and I’m in total remission. The only thing of note is that I have elevated eosinophils, which is actually a good thing as it is a sign that I have helminthes inside.
A brief summary of my experience over the last year:
I inoculated with 1,000 TTO (human whipworm ova) on June 20th 2010. I experienced very little side effects from inoculation. I took a three week taper of prednisone to blunt any side effects, and this worked well. I was also on 750 mg of Colazal (a 5-ASA), my normal IBD medicine. Although there were some days of loose BMs, it’s really unclear to me if they were a side effect or, more likely, from IBD. About one month in I started to have slightly better BMs. It took a full two months for me to start seeing major benefits. By September, it was starting to be clear that I was having sustained benefit, and was having one usually solid bowel movement per day, and generally feeling great. To test the helminth effect, I cut my medicine by half. By November, I had been feeling so well that I went totally off Colazal. It was the first time in five years that I woke up and did not have to swallow a handful of pills. I felt great. I was still having just one BM per day, no mucus, no pain. I got through the winter pain free and without flaring. This is great, as I’ve always had at least one big flare-up over the winter. My health remained steady through March where I added in another 500 TTO and 15 hookworm, which is what I had planned on doing (figuring combination therapy is best). That went well as well, again with a few days of loose stools, but that subsided. Now, in June 2011, one year into the therapy, I’m still in full remission, having one solid BM per day, and feeling well.
The one side effect that did cause me some discomfort at times was that I have had some issues with constipation (kind of ironic no?), and early on, had some hemorrhoids. The hemorrhoids are cleared up, although I still get some constipation. Recently, I went two full days without passing a BM, which is pretty amazing especially given that I eat a regular meals. Another issue is that I will get loose stools if I eat too much diary, which is fine as I’ve been a bit lactose-intolerant for a while, so is my dad. Honestly I really should stop, but feeling so healthy makes me want to eat ice cream all the time, and everything else I avoided for years.
I’m not cured, and I’m not free from the specter of IBD. But I do go days without thinking about it at all, and the freedom that helminthic therapy has given me is so wonderful, it’s actually difficult to put into words. To say the least, it has been a foundational shift in my life. The quality of life I enjoy is better than at anytime since I was diagnosed back in 2005.
The good health that the helminthes provide is a new normal for me. It has impacted my life in so many ways—I can think about the future in ways that I couldn’t for years, I’m not living in fear of flaring, nor of food. I’m happier and more active, I’m more confident with what I’m doing in life. I’ve found that good health has a ripple effect. I’m more motivated to live better. That means exercise every week, getting lots of sun + vitamin D, eating well, and trying to better balance life. Granted these things are projects to work on for life, but they are easier when you don’t have to worry about the simple task of getting through your day without pain or discomfort.
From one perspective, you could say that I have given myself my health back. Truthfully I have poured uncountable hours and late nights into reading, studying, and thinking about this therapy, and my disease in general. This has at times come at a cost to other things in my life—but as we all know, when you are in ill health and suffering, things like studying or my work seem less important.
But to think for a minute that I did this alone is the most profound misunderstanding not only of my experience, but of the human situation. This therapy stems from the work of brave and incredibly thoughtful medical researchers who decades ago started trying to figure out why autoimmune diseases were rampant—and rapidly increasing—in developed countries. Some have turned much of their careers over to studying the relationship between helminthes and autoimmunity, and we should all be grateful.
In addition, to the crazy people who decided to bring helminthic therapy out of the laboratory and make it available to the masses, we also owe a huge debt of gratitude. I have been working with Jasper Lawrence and Dr. Marc Dellerba of Autoimmune Therapies for over a year now, and they have been incredible. Not only have they taken extreme risk in setting up a business that literally sells parasitic worms over the internet—which sounds like the ultimate internet scam—but they have taken on personal risk to themselves and their families to provide this medical therapy to us. My special thanks to Marc Dellerba who has spent hours on the phone with me over the past year and a half, has always answered every email, and been incredibly helpful and thoughtful. I consider him a friend, although I’ve never met him or Jasper, perhaps one day I will if I’m ever headed across the pond.
Also, a huge thank you to all those patients and early-users of helminthic therapy that blogged, posted, or otherwise publicly wrote about their experience. When I first started learning about this therapy, it was the personal blogs from patients that made me realize that this was not some internet-quackery but rather a very real opportunity to change my health for the better. In particular the blogging done by Debora at waitingforthecure and Luke at LukEcology were inspiring and helpful for me early on. Also, the work done by Herbert Smith in setting up the wiki and Facebook groups, as well as just generally promoting the therapy has been huge. When I started there were just 2 or 3 active blogs, and one difficulty-to-follow yahoo forum. Now there new bloggers every month it seems, active forums on yahoo and Facebook, a great open source wiki, as well as hundreds of active patients. It’s difficult to get an accurate count, but I know that AIT has treated well over 300 people, add to that patients from Wormtherapy in Tijuana, as well as those using Ovamed’s TSO, and there is a seriously large group of us blazing the trail here. Very exciting for a safe, natural & drug-free therapy that has the potential to help literally millions of people.
The reason for my blog is to follow in their footsteps, and hopefully provide an interesting and useful account of my experience. I know that recently my blogging has slowed, and now that I have hit the one-year marker, I will probably blog less. I will continue to post summary-updates, because there is still much unknown about the long-term viability of this therapy. I’m sure I will still be active in the Facebook forums, at least periodically, as I’m excited to see other people’s experiences, but I do need to move on with my life a bit. I’m still happy to answer emails too, as I have always done, however I may be slower at that too.
A request: Anyone who has benefitted from reading this blog and others, please consider writing your own once you begin therapy. I strongly encourage this, both as a good record for yourself, and to participate in the collective knowledge of this therapy.
I want to express my thanks to my parents, friends, and loved ones who helped pick me up during the dark days of sickness and depression when I could not stand on my own two feet. IBD, like many chronic diseases, can really tear a person down, both emotionally and physically, so I want to at least say thank-you to everyone who has been there for me.
Last but not least, my little comrades, down in my colon and small intestine celebrating their first birthday. Thank you for your hard work in re-balancing my immune system and keeping down my inflammation levels. Gracias mis helmintos lindos. Siempre en mis entrañas y mi corazón.
Best wishes, and may everyone find their own level of good health