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Swallowing Worms to Treat my Crohn's! (Self-Experiment)

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Published on Aug 19, 2016

In 2010, I (Sean Ahrens, Crohnology Founder) intentionally infected myself with parasitic worms (Trichuris Suis Ova, TSO) as an experimental treatment for my badly flaring Crohn's. This video records the very first dose I took on March 14, 2010.

This is the first time I've published this video. I'm doing so now because I just published my experiment and a full report of the results in the July 2016 Issue of the American Journal of Gastroenterology. I believe having a patient self-experiment published in a major medical journal is a big step for the ePatient movement!


From my Facebook update:

"So I think this is kind of big news: I just got published (in print) in a major medical journal, the American Journal of Gastroenterology (AJG)!

I submitted a 1500-word scientific report of the self-tracking experiment I did on myself taking pig whipworm (an intestinal parasite) for my Crohn’s in 2010. For this experiment, I had mail-ordered the pig whipworm from the internet, shipped via Thailand in small vials. Yeah I know that sounds kinda crazy. I did this experiment from March - August 2010, intentionally ingesting TSO (Trichuris Suis Ova), a non-FDA approved treatment, every two weeks, and recorded my changing symptoms in a digital tracker I built for myself.

While I’ve given talks on this self-experiment at various health and medical conferences, the detailed report of my results have remained unpublished up until now. And they are published in a major medical journal by Nature! That feels pretty good ;)!

Unfortunately, the way medical journal publishing works is that unless you have paid access to Nature, you cannot read my publication (entitled “Opening (and Swallowing) A Can of Worms to Treat My Crohn’s Disease”; link: http://www.nature.com/ajg/journal/v11...). And legally I have given up copyright ownership of my submission to Nature (kind of a bummer, right?) so I can’t share it with you here; however, after 6 months from when it appeared in print (July 2016), I have rights to re-publish it online for you to view—which I will do, in December 2016.

Since you can’t read it now, I’ll give you the summary:

During 2010, my Crohn’s symptoms were very active. During most all of the experiment taking pig whipworm, it appeared the whipworm was not helping: my symptoms remained very active. Because taking care of my health was priority #1 and doing the experiment was priority #2, I started a dramatically strict diet (called the Specific Carb Diet) about 2/3 the way into my study because I needed to do anything to quell my symptoms; I continued this diet for years afterward. Three months after I stopped taking the pig whipworm (and seven months after starting the diet), my symptoms dramatically improved (and nearly disappeared); in November 2013 my physician declared after a colonoscopy that my Crohn’s showed signs of “remission with no visible inflammation”. I believe that one of the two (the diet or the whipworm) helped bring me into remission, but I cannot say which one, or if it was the combination of the two.

As you may know, I think it's super important for the advancement of medical knowledge for patients who do self-experiments (or just treatment variations, diets, etc) on themselves to record and publish those so we can build up a resource of patient's real-world (and otherwise unrecorded) collective knowledge. This will help medical information to flow from patients up.

That’s my report for now, and I plan on publishing the 1500-word full report once I have rights to do so in December 2016.


Links:
http://www.nature.com/ajg/journal/v11...
http://e-patients.net/archives/2016/0...
http://www.ethanzuckerman.com/blog/20... (search for "Sean Ahrens")

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