A CNN report describes a motivated ulcerative colitis patient arranging for his own experimental treatment. Experimenting on yourself is frowned upon, but that patient persevered and is doing better.
Meanwhile, the patient had gone on the internet and found an article in a medical journal by Dr. Joel Weinstock, chief of gastroenterology at Tufts University Medical School, which showed some ulcerative colitis patients found relief after ingesting the trichuris suis worm, a parasite that lives in the intestines of pigs.
The patient contacted Weinstock to ask him to treat him with worms, but Weinstock said no, since it wasn’t approved for general use by the Food and Drug Administration and could only be done experimentally.
I had contacted Dr. Weinstock myself back in 2004, and got the same answer. I did inquire about being included in experimental trials, and there was nothing planned for anytime soon, if I recall correctly. Within a month of that, I was in the hospital having my emergency colectomy, so it became a moot point for me.
Weinstock’s original experimental trials, going on memory, showed better rates of remission for Crohn’s disease than for ulcerative colitis. But the ulcerative colitis numbers were enough to motivate the patient of the article to action.
I had wondered about whether the Trichuris suis eggs might be available simply by ordering from a biological supply company, but a quick Google search does not show any such easy route. The patient instead decided to go ahead with using the human parasite Trichuris trichuria, traveling to Thailand to put himself within a population where T. trichuria infection is commonly endemic. He paid a doctor there to collect eggs from the stool of a young girl with a nematode infection. He had to figure out egg hygiene and worm husbandry on his own, a critical set of steps that no one else would comment upon, probably based on liability issues. (His doctor told him if he proceeded not to come back to his office.)
The travel and general grossness of the whole process was offset by the outcome, which was periods of complete remission. On flare-ups, the patient would re-culture a set of nematodes to start over again. The patient located a doctor who was willing to help document his health status in relation to his parasite load, and the result was a recently-published research paper on the topic, leading to the CNN story.
“He e-mailed me, and I ignored it,” Loke remembers. “I was very skeptical at first, but he convinced me to have lunch with him.”
At their meeting, the patient laid out his story in more detail, and Loke became fascinated.
“It’s an amazing story, and he’s quite possibly one of the smartest people I know,” he says.
Of course, there are different opinions.
Hanauer, chief of gastroenterology, hepatology and nutrition at the University of Chicago, warned against making too many conclusions from one man’s positive experience with worms.
“We don’t make medical recommendations based on a single case report,” he says.
He says New York University was “irresponsible” for putting out a press release about the study, and criticized media outlets such as CNN for reporting on it.
“It’s ridiculous and incredibly inappropriate,” he says. “You’re driving people to go on the internet and buy these worms, and these are potentially pathogenic organisms. These eggs can invade the systems of people who are immune suppressed and cause infections.”
I always thought the cool part of Weinstock’s original research was the use of the pig parasite, Trichuris suis, in humans. The species-specific relation of parasite and host was stated as meaning the pig parasite could not complete its life cycle in the human host. The parasite load could be controlled simply by varying the rate of ingestion. It seems to me that the public health issue of increasing the abundance of a human parasite in communities where it is usually absent is salient, and another point in favor of use of the pig nematodes instead. Perhaps instead of Thailand, the patient might have visited a veterinary conference for livestock vets. I’m happy that he is finding relief, but I don’t think that he has found a generally applicable approach to helminthic therapy for ulcerative colitis and Crohn’s disease. I hope that Dr. Weinstock, the original researcher, is able to continue with his research on the topic, given the various points in favor of his choice of helminthic agent.