Eight years ago, New Yorker Herbert Smith did the unthinkable -- he swallowed thousands of pig whipworm eggs in a desperate bid to quell his advancing Crohn's disease.
The microscopic eggs, invisible to the naked eye, were suspended in a liquid solution.
"There was nothing to it," said the 33-year old financial analyst, who uses a pseudonym to talk about his worm-drinking ways. "It was drinking half a cup of salty water."
At that moment, he said, "I felt excitement and definitely hope."
For Smith, something incredible happened. After swallowing 2,500 worm eggs every two weeks for three months, most of his Crohn's symptoms vanished.
"I was definitely ecstatic," he said. "The symptom reduction was pretty drastic."
"I did have blood tests before and after," he said, and "the markers of inflammation went down significantly."
As for his physician's reaction, Smith said "he was cautiously optimistic."
Smith has been battling Crohn's disease since he was diagnosed as a teenager.
"The worst day of your life is to find out there's no known cure," he said. "It affects your quality of life in a significant way, and most treatments are subpar."
As many as 1.4 million Americans live with Crohn's disease or its cousin, ulcerative colitis, according to the U.S. Centers for Disease Control and Prevention. In Crohn's disease, the body's immune system mistakenly attacks the lining of the intestine, causing diarrhea, abdominal pain, fatigue, bleeding and infections. For Smith, the disease has been difficult to control.
Despite undergoing multiple operations to remove part of his gut, his symptoms always returned, he said. He calculated that at his current rate of required surgeries, he would eventually run out of small intestine. If this occurred, he would require liquid feedings through an intravenous line, with potentially fatal consequences.
"That realization was pretty hard to take in," said Smith. "I had to do my own research."
Worms as Medicine
Smith started studying the medical literature on how parasites might be useful in the treatment of inflammatory bowel disorders such as Crohn's disease. He also learned that one could order a three-month supply of pig whipworm eggs from Europe for 3,500 euros.
But he was realistic about his treatment goals.
"I knew that the most I could hope for was a remission for Crohn's, not a cure," he said.
Despite his promising response to pig whipworms in 2004, Smith had to stop because "it was very expensive and hard to get," he said.
Today, researchers are eagerly studying the experimental therapy. After finding that pig whipworm treatment was effective and safe in a small number of Crohn's patients, scientists are now conducting multicenter studies across the United States and Europe. The goal is to determine if this treatment will relieve symptoms and be tolerated across a larger group of patients.
Dr. Joel V. Weinstock, a parasitologist and chief of the Division of Gastroenterology/Hepatology at Tufts Medical Center in Boston, said there was a scientific basis behind drinking pig whipworms to help reduce symptoms in autoimmune disorders, such as Crohn's.
"Parasites are known to dampen the immune systems of their hosts," Weinstock explained. More specifically, drawing from animal studies from his laboratory, pig whipworms appear to activate cells that regulate the immune system so that it doesn't overreact.
Pig Whipworms Don't Make Us Sick
One advantage of pig whipworms is that they don't cause disease in humans. Weinstock emphasizes that this parasite doesn't migrate outside your gut, can't reproduce in humans and dies off after two months. People who have pig whipworms can't spread them to others, and there are several medications that can be used to rid the body of whipworms, Weinstock said.
According to Weinstock, there have been no major side effects or complications of pig whipworm treatment reported in studies on Crohn's patients. One study on whipworm treatment in those with hayfever documented mild side effects (gas, diarrhea and cramping) that were usually resolved after two weeks. According to Dr. P'ng Loke, an assistant professor in the department of microbiology at New York University, citing the studies available so far, "pig whipworms look to be extremely safe for the time being."
Worm Cocktails – Don't Try This Alone
Stories of other patients with autoimmune diseases, like Smith, who are deliberately infecting themselves with worms have surfaced. Dr. Weinstock cautions that patients shouldn't treat themselves with worms. He encourages Crohn's patients to remain on standard, proven treatments and to talk to their physicians.
Smith noted that he kept his physician informed about his parasite experiments. One reason, he said, is that "I didn't want him to do a colonoscopy and be horrified." Smith has posted endoscopic photos of his intestinal worms on his Facebook page.
For patients who want to explore whipworm therapy, Weinstock encourages patients to talk to their doctors about enrolling in clinical studies. Other pig whipworm clinical trials are planned or under way for more autoimmune diseases, including; ulcerative colitis (an inflammatory bowel disease), multiple sclerosis (an autoimmune disorder that affects the brain and spinal cord), psoriasis (an autoimmune skin disorder) and rype 1 diabetes.
Smith has declined to participate.
"In clinical trials, you don't know what you're taking because you have a 50 percent chance of being in the placebo group," he said.
After quitting the pig whipworm treatment, Smith started using human parasitic worms he obtains from outside of the United States -- a move that would almost certainly be frowned upon by the medical community at large, as these types of parasites can harm people. This practice is legal as long as he does it in the privacy of his own home, said a Food and Drug Administration spokesperson.
Heather Gelabert, a 32 year-old Florida homemaker, was forced to drop out of college because her Crohn's disease proved so difficult to treat. She was initially taken aback when her physician described pig whipworm treatment but after a long discussion, she decided to enroll in a clinical trial.
For Gelabert, the promise of this upcoming clinical trial for Crohn's patients brings new optimism. "I am excited and very hopeful," she said with enthusiasm. "I'd like to start now!"