When Stefanie Collins Faehnle arrived home last December, there was an envelope waiting on her kitchen table. She excitedly opened it to find two small vials, a pipette and a bandage. There was no return address. There were no instructions.
The 36-year-old medical laboratory technician had been waiting for this day for the past two weeks. Inside one of those vials were thirty-five minuscule parasitic hookworm larvae, waiting for their host. From her home in Cleveland, Faehnle removed the liquid and placed it onto the bandage. Then, feeling only a little bit anxious, she stuck it on her skin. And then she waited. After about seven minutes, she felt something: a tingling sensation; a slight burning.
It was working. The hookworms were burrowing into her skin.
Faehnle's part of the process was over, but the parasites' journey was just beginning. Once inside, they hitched a ride to her lungs via the bloodstream, each cough pushing them up until they could be swallowed down the esophagus, eventually settling into her intestines. There, they made their home, free to feast on her blood.
Helminths—which are essentially squirmy, worm-like parasites that include hookworms and whipworms—have been around for millions of years. But helminthic therapy, an experimental treatment where people seek out these critters to purposefully infest themselves to treat autoimmune and inflammatory conditions such as Crohn's disease, ulcerative colitis and multiple sclerosis—well, that's new. As the theory goes, the parasites modulate human immune responses to prevent our bodies from getting rid of them. And this happens to have some beneficial side effects for us hosts.
Before starting helminthic therapy, Faehnle was miserable. She had been suffering from eczema and chronic hives since the age of fourteen. She had tried everything to treat the skin lesions and itching. But four dermatologists, three family doctors, two allergists and one acupuncturist later, nothing had worked. "I even tried dabbing my own urine on my skin," she said. Appropriately, the results were piss poor.
But after reading about the treatment online, the idea burrowed its way into her mind; she decided to give it a shot.
Except starting helminthic therapy isn't a matter of heading to a family doctor. In fact, when Faehnle told her physician about the plan, the doctor tried to talk her out of it. The treatment is still in its infancy; the only official channels are through studies and clinical trials. However, an online black market for parasites has emerged, drawing people like Faehnle who want to try the treatment now—despite the lack of oversight, regulations and backing from the wider medical community.
At Tufts Medical Center in Boston, chief of gastroenterology Dr. Joel Weinstock has spent decades thinking about parasites. One of the pioneers in the field of helminthic therapy, he said that the beneficial effects of helminths appears to be related to the hygiene hypothesis, which argues that the increasing cleanliness of our environments is leading to alterations in humans' intestinal flora, boosting the prevalence of certain illnesses in developed countries. To put it another way: our bodies are rebelling against our obsession with being clean.
Weinstock said the concept can be seen in the skyrocketing prevalence of inflammatory bowel disease in the West: what used to be a rare condition now affects one in every 250 people in America while remaining low in less developed countries.
"To have anything change so rapidly within one generation, one lifetime, means there has to be a very important environmental factor," he explained. "It occurred to us that [parasites are] one of the things we've eliminated from the GI [gastrointestinal] tract in the 20th century. In less developed countries everybody still gets them; developed countries, they don't have it any more. We lost something."
Tests on mice over the past 15 years seem to support this. Those exposed to helminths were protected against colitis, which causes the intestines to become inflamed. Human trials also found promising results.
Weinstock said that the positive effects of helminths on human health appear to come from two responses: they heighten the function of regulatory T cells in the gastrointestinal tract—which are critical for preventing abnormal immune responses, such as inflammatory bowel disease—and they also affect dendritic cells, which as Weinstock explained, "are the master of immune responses."
Or, to explain it on a level that a child could understand: "These worm-like animals stimulate regulatory immune cells, which in turn act as policemen to prevent the bad immune responses that cause inflammatory bowel diseases," he said.
The benefits from helminths appear to last for some time, too. Weinstock said that experiments in mice have shown that even when the parasites are eliminated, the changes to the immune system remained. He ventured that people growing up in "wormy environments" might retain protection for a decade or more in cases of early exposure. But when it comes to stopping a disease in its tracks, he said that's a very different question—one that data, especially in humans, still has not proven.
When Jasper Lawrence founded Autoimmune Therapies in 2007, he was trying to offer others the treatment that he said helped him. Lawrence, who suffered from asthma and allergies, first heard of helminthic therapy in 2004 and subsequently travelled to Cameroon to infest himself with hookworms. He credited this decision with his remission. After returning home, he decided to make parasites his business.
But in 2009, after a visit from the Food and Drug Administration (FDA), he hit a wall. Hookworms and whipworms are considered biological products and can currently be used only in clinical trials. Undeterred, Lawrence, along with his wife and partner Michelle Dellerba, reportedly moved to the United Kingdom where they set up shop once again (Lawrence refuses to disclose his current location).
Today they ship their homegrown hookworms and whipworms worldwide, charging between $2,900—$3,900 (plus shipping) for a three-year contract. Customers hoping to treat conditions including allergies, asthma and multiple sclerosis take three doses of hookworms, every 12 weeks, and then receive a top up every three years. Whipworms—sold to treat inflammatory conditions like ulcerative colitis—are drank every two to four weeks. The website, citing the anecdotal account from the father of an autistic child, recommends those seeking to treat autism to go for a hookworm-whipworm two-punch—if you can afford it. Customers are also told to continue the treatment for life.
But Lawrence said that he still experiences some trouble shipping to the US as their products can be stopped at the border if they are spotted. He stopped mailing there in 2010 for about a year as he was terrified of possible repercussions.
Autoimmune Therapies isn't the only provider that operating in this online market, however. Another company, which asked not to be named, refused an interview due to worries that any exposure outside of the helminth community could bring unwanted attention from the government.
But despite not being approved by regulatory agencies such as the FDA or Health Canada, the demand for helminthic therapy persists (Lawrence would not provide his number of clients, but their website claims more than a thousand people ranging in age from 22 months to older than 80). Arguably, this underground industry could only exist in today's connected world.
"The internet has made information of all types more accessible and because of sharing and social media the impact is amplified," Lawrence said. He also noted that some people are willing to try the experimental treatment despite the lack of approval because they do not necessarily trust the government and even scientists—they are wiling to listen to the people who are going against these bodies.
Faehnle seems to fit into this category. "The FDA isn't really an organization that I respect and whether they approve something or not means very little to me," she said. "To even consider something like helminthic therapy you must be brave and a bit of a scofflaw. Doctors and family members will give you all kinds of shit. Random jerks on the internet will try and debate with you. […] You kind of have to give zero fucks."
Faehnle said that she started seeing positive changes three months post-inoculation. The hives and lesions all over her body started improving, bit by bit. But there were some side effects. In addition to a persistent rash where the hookworms entered, she reported a strong immune reaction after a month and a half which caused her skin to flare up. "I had mild joint pain, mild diarrhea and mild gut aches," she said. Other symptoms of hookworms can include fever and anemia. Faehnle stated that more research into the therapy should be done, and she admits that it is possible the placebo effect is at work. But she still plans on maintaining her infestation for the rest of her life.
This online market, spurred by anecdotal claims and optimistic headlines, makes others uneasy. Dr. Weinstock argued that helminths are not readily available to the public for a purpose: all treatments—parasites included—must undergo thorough testing for safety and efficacy. "Maybe they don't do anything for the disease; maybe they'll be dangerous," he said. And certainly some of the benefits touted by online retailers are bold—some list up to 60 conditions that helminths can allegedly (and anecdotally) help treat, such depression and acne. But the science doesn't confirm it yet.
And Weinstock noted that ordering parasites online comes with risk. "Patients are not doctors or scientists," he said. "The online sites are not monitored. What they sell and say may not be as advertised or true." His advice: stick to conventional therapy for now. "The FDA is very reasonable. Nobody is acting stupid. In this day and age, everybody wants blame the government for being dumb. They're there to protect us against wildcatters who haven't done studies," he said.
Weinstock does see a future where helminthic therapy is readily available, saying that animal models have pointed towards inflammatory bowel disease, multiple sclerosis, type one diabetes, allergies as possible areas of treatment. Whether it will involve patented, designer parasites or pills that achieve the same results remains to be seen, he said. But until that day comes, the underground parasite sellers will be the only game in town.
Modern Medicine is a series on Motherboard about how health care and medical technology can move forward so rapidly while still being stuck in the past. Follow along here.