Helmethic therapy, or worm injection has been gaining popularity the last few years
Read here about Vik’s experience with worm therapy for his severe Ulcerative Colitis
A shadow network of patients are trying to treat their own debilitating
diseases — by infecting themselves with gastrointestinal worms.
When Vik was in his late 20s, blood started appearing in his stool. He found himself rushing to the bathroom as many as nine times a day, and he quit his job at a software company. He received a diagnosis of severe ulcerative colitis, an inflammatory condition of the colon. Steroids, which suppress inflammation, didn’t work for him. Mesalamine suppositories offered only the slightest relief. A year and a half after his diagnosis, Vik’s gastroenterologist warned him that because his disease was poorly controlled, he risked developing a condition called toxic megacolon: His inflamed intestines might rupture, leading to blood infection, septic shock or death.
The doctor recommended infusions of cyclosporine, a powerful immune-suppressant drug. Vik looked it up and learned that the drug, often given to transplant recipients, in rare instances can increase the risk of fatal infection and certain cancers. And if cyclosporine didn’t work, the next intervention would probably be the surgical removal of his colon. Vik might have to wear a colostomy bag for the rest of his life.
“I had a feeling there had to be a better way,” he told me recently. (Worried about being stigmatized, Vik asked that I identify him only by his first name.) He began researching ulcerative colitis and discovered that the prevalence of inflammatory bowel disease — an umbrella term that includes both ulcerative colitis and Crohn’s disease — had increased markedly in the United States over the 20th century. Yet the disease was less common in the developing world. He learned that exposure to dirt and unsanitary conditions early in life seemed to protect against these and other inflammatory diseases later. And then he encountered an explanation for the correlations in the research of a scientist named Joel Weinstock.
Weinstock, a gastroenterologist now at Tufts University, thought that parasites were to blame. But it wasn’t their presence in the human digestive system that was causing the rise; it was their absence. To survive for years in another animal, parasitic worms, known as helminths, counter their hosts’ defenses. Because an out-of-control immune response against native bacteria was thought to drive inflammatory bowel disease, Weinstock’s insight was that parasites’ ability to disarm the immune system might prevent the disorder. The broader implication was that the disappearance of parasites — largely eradicated from American life in the early 20th century through improvements in sanitation — might have left our immune systems unbalanced, increasing our vulnerability to all types of inflammatory disorders.
To Vik, Weinstock’s idea was the first cogent explanation for his disease. It also pointed toward a solution. Weinstock was already experimenting with “re-parasitizing” people with inflammatory bowel disease, using a helminth called Trichuris suis, the pig whipworm. He had chosen the species because, in theory, it can’t reach sexual maturity in humans and spread from one person to another. Early, small studies yielded impressive results, with 43 percent of colitis patients seeing improvement after 12 weeks of whipworm eggs, but Vik thought the use of pig whipworm had a flaw. It required continual dosing, and it could cost tens of thousands of dollars a year (a German company was producing the eggs for human consumption; in the United States, selling them to treat a disease is illegal). And most important, if he expected a parasite to change his immune system, he believed, a species adapted to humans, not pigs, was likely to do a better job.
Vik wanted human whipworm. This helminth, which reaches about 1.5 inches in length, fixes itself into the wall of the large intestine and feeds off the organ’s secretions for perhaps two years. The potential results of severe whipworm infection include anemia, clubbed fingers and, in children, stunted growth. But after exhausting his other options, Vik began to think of infecting himself with parasites as the most rational course of action. After all, the parasite had been with people since prehistory; Ötzi the Iceman, the 5,300-year-old mummy found frozen in the Italian Alps, had whipworm. Besides, the worst possible outcome of a whipworm infection was a kind of inflammatory bowel disease. And he already had that.
His doctor was dead set against the idea, Vik told me. So was his wife, a doctor in training. (They later divorced.) Vik is a driven, entrepreneurial type, though, and undeterred, he began emailing any expert who “would listen to my crazy ideas.” In 2004, he flew to Bangkok to meet a parasitologist who agreed to hear him out. He brought along his father, a professor and internist, for “gravitas.” (Vik’s father, who worked in Southeast Asia as a young doctor, told me it was common then to leave light whipworm infections untreated.)
The Thai parasitologist later handed him a vial of fluid containing whipworm eggs. Microscopic in size, they had come from an 11-year-old girl in southern Thailand, he was told. Vik flew home.
Next began what Vik describes as “the most difficult part” of his life. He set up a lab in his parents’ Southern California home and stocked it with a microscope, petri dishes, slides and flasks purchased on eBay. But he couldn’t get the eggs to “embryonate.” Just as chicken eggs need to incubate to hatch, helminth eggs require “embryonation” to produce infective larvae. Parasite eggs are excreted in feces, and in their native tropics, that embryonation occurs naturally after the eggs spend time in warm, humid conditions. But reproducing those conditions in his parents’ house proved difficult. He tried various conditions — warm, wet, cool, dry, light, dark — to no avail: The eggs remained inert. Swallowed in this state, they would pass right through his gut without hatching.
The breakthrough came when, imagining defecation under a tree, Vik abandoned his goal of antiseptic incubation and began using nonsterile tap water in the petri dish. Now the eggs, football-shaped and translucent under the microscope, began to display a knotted, ropy shape within — developing larvae — indicating embryonation. Months after returning from Thailand, he finally drank a glass of water containing a few hundred whipworm eggs.
Three months later, he swallowed another thousand eggs. Ova began showing up in his stool, indicating that his body now hosted living, breeding parasites. When he tapered off his drugs, his colitis remained quiescent. Instead of triumph, though, Vik felt doubt. Was this real? Or was it a natural ebb in his disease? “I wanted proof,” he told me. That’s when Vik began searching for what he calls “the Team.”
In his interactions with scientists, Vik had noticed that parasitologists, the scientists most familiar with the dangers of parasitic infection, were the most receptive to the idea that parasites might help with disease. So in 2006, after poring over numerous faculty web pages, he emailed a young parasite immunologist at the University of California, San Francisco, named P’ng Loke.
When Loke heard Vik’s story — his disease, his trip to Thailand, his trouble incubating the parasites — he found the tale compelling. “He didn’t seem crazy, just someone who had really done a lot of research, had his back up against the wall and decided to take a plunge,” says Loke, who now has a microbiology lab at New York University.
Loke agreed to monitor Vik, a decision that would alter the course of his own research. Over the following four years, Vik relapsed twice. Whenever his whipworms grew old, the colitis flared. Then he drank more eggs, and his disease came back under control. A gastroenterologist periodically examined Vik’s colon, taking tissue samples. And when Loke and his colleagues analyzed which genes were expressed during flares and remission — an indicator of immune activity — they discovered a pattern that may change how scientists think about ulcerative colitis.
When the disease was quiescent, production of one protein in particular, called interleukin-22, increased. IL-22 encourages intestinal mucus to flow. In inflammatory bowel disease, the protective mucous layer is often eroded. Scientists think this allows native microbes, usually held at a slight remove from the intestinal wall, to get closer to the gut wall, leading to inflammation and further impeding the flow of mucus. Vik’s whipworms apparently interrupted that vicious cycle by restoring the mucus barrier. Parasites, it seemed, could heal the gut.
Over the past decade, thousands of people around the world have introduced parasites into their bodies on purpose, hoping to treat immune-related disorders. Some have drawn inspiration directly from Vik’s case study, which appeared in the journal Science Translational Medicine in 2011. But many more have been inspired by the same research that inspired Vik. A confluence of factors is driving what is essentially an amateur quest to “rewild” the modern body and restore it to an imagined prelapsarian state. The internet has facilitated the sharing of information, both reliable and not. But maybe more important, scientists are wrestling with germ theory, a cornerstone of modern medicine, and beginning to articulate a more nuanced idea: that the organisms in our bodies not only make us sick but also keep us healthy. Participants in the parasite underground see themselves as acting on this new emerging paradigm.
When I first began exploring the movement a few years ago, two self-styled “providers” supplied most of the parasites. They’d read some of the same research as Vik, found it promising and acquired helminths in the developing world. After treating their own conditions (they claimed), they began advertising helminths online for thousands of dollars. They saw themselves as pioneers.
Since then, competition has come to this niche market. New providers offer lower prices. Users read about the science in online forums, share their experiences and learn where to get helminths. Like Vik, a growing contingent of users has learned to cultivate parasites for self-treatment, circumventing the providers altogether. They trade incubation methods in Facebook discussion groups, occasionally arrange for the exchange of “starter” material, including eggs or fecal material from worm-infested donors, and post photos of their homegrown eggs and larvae.
Anecdote fuels the movement, because no large randomized, double-blinded, placebo-controlled studies have produced evidence that parasites can cure anything. And because parasites aren’t F.D.A.-approved, paranoia is common. Nearly everyone I interviewed requested some measure of anonymity, not only to avoid stigma but also because they worried about losing access to a treatment they said had changed their lives.
Scientists I queried tended to emphasize the dangers of helminth use. “I do not advocate self-experimentation when the risks have not been clarified,” Stephen Hanauer, director of the Digestive Health Center at Northwestern Medicine, told me in an email. Joel Weinstock, whose research partly inspired the movement, ticked off more reasons purchasing unregulated parasites is a bad idea: You don’t know that you’re getting the species promised. Even if you are, you don’t know if the specimens are alive, or if you’re getting the appropriate numbers of them, or even what the appropriate numbers are.
Still, a few experts also expressed sympathy. “I certainly can’t condone it, but I completely understand,” Alex Loukas, a parasitologist at James Cook University in Australia, told me. “You’re talking about people with debilitating disease. Modern medicine has just failed them.” This is perhaps the best way to understand helminth use: as one grass-roots response to an epidemic. The prevalence of autoimmune and allergic diseases has increased between two- and threefold in recent decades. Roughly one in five Americans has an allergic disease, ranging from seasonal hay fever to life-threatening food allergies. Roughly one in 13 has an autoimmune disease — a disorder in which the immune system tasked with our protection instead attacks our own bodies. These disorders often strike in the prime of life or earlier, causing decades of suffering. And current therapies fall short. Continuing research offers reasons for hope, says Daniel Rotrosen, the director of the National Institute of Allergy and Infectious Disease’s division of allergy, immunology and transplantation. But currently, he says, “We are really not where we would like to be in terms of treating many of these diseases.”
There’s an apt historical precedent for the current unregulated experimentation with parasites: the underground pharmacies and smuggling rings dramatized in the movie “Dallas Buyers Club.” They sprouted during the 1980s AIDS crisis, serving a demographic, mostly gay men, who were ignored by mainstream medicine and who, in an effort to treat themselves, began importing non-F.D.A.-approved drugs from Mexico. Many of the drugs they used didn’t stand up to later scientific scrutiny, it’s worth noting, but the calculus leading them to take unproven drugs was similar to that driving helminth users today. If you are stricken with a terrible disease for which medicine has little to offer, then what, really, do you have to lose by turning to a parasite?
One day in September 2010, Amy, a 46-year-old teacher in the eastern United States, found herself struggling to read and to see people’s faces. She thought she was going blind, but then she was given a diagnosis of multiple sclerosis. Her immune system was stripping the fatty coating, called myelin, from her nerve fibers, impeding their ability to transmit signals. As the disease progressed, it could cause paralysis and incontinence, but what worried Amy most was not being able to read. “My No. 1 activity is reading,” she told me. “I lost part of my life for a while.”
Her neurologist recommended a drug called Copaxone, she says. But the injections killed fat cells, leaving unsightly indentations and bruises along her thighs. And new brain lesions showed up on scans, indicating that the disease continued to advance. Amy tried another drug called beta interferon, but it triggered fevers, and after injections she felt ill for hours. “It was just this weird nightmare of life,” she says.
Then Amy’s thyroid gland, important in regulating metabolism, started failing, stressed by the interferon treatment. Her doctor recommended that she take thyroid replacement hormone. This was the last straw. Each treatment caused new problems, it seemed, and none really helped. She wanted another option.
A co-worker recommended a 2011 book called “The Wild Life of Our Bodies,” by a biologist named Rob Dunn. It discussed therapeutic helminths. The notion that we’d co-evolved with parasites for so long that our immune system needed them appealed to Amy’s holistic mind-set. She joined a Yahoo group dedicated to “helminthic therapy.” That’s where she discovered an extraordinary study from Argentina.
In the early 2000s, some multiple-sclerosis patients at a neurology clinic in Buenos Aires began showing up with parasite infections. Aware of the potential for parasites to help inflammatory disease, the presiding neurologists proposed an experiment: Don’t treat the parasites, and see what happens. Twelve patients agreed, and for nearly five years the doctors monitored them. Disease progression, as measured by brain scans, slowed significantly. Blood work showed an elevation of “suppressor” cells that prevent autoimmune diseases. And when, more than five years later, the doctors dewormed four patients who complained of malaise, those suppressor cells disappeared, and the disease started up again.
Inspired by these findings, which were published in 2007, small exploratory studies testing the pig whipworm on multiple-sclerosis patients began around that time at the University of Wisconsin, Madison. That helped to reassure Lisy, Amy’s partner, who initially thought the idea reeked of quackery. Amy contacted wormtherapy.com, a site run by man named Garin Aglietti. Aglietti wasn’t a doctor — he’d dropped out of medical school — but he’d treated his own psoriasis, he said, with hookworms acquired in Belize. His breadth of knowledge impressed Amy. “I felt this immediate trust,” Amy told me. Two years’ worth of hookworms cost $2,500.
In January 2012, Amy and Lisy flew to San Diego. Aglietti picked them up at the airport in an S.U.V. and drove them across the border to a two-story building in Tijuana, where Amy met a warm doctor named Jorge Llamas. His spare, basic office didn’t have shiny, modern medical equipment, but as Amy says, helminths were pretty “low-tech.”
Hookworms penetrate the skin and, after a weekslong odyssey through the body, arrive at the small intestine, where they feed on blood and grow to about a centimeter long. Llamas applied gauze to Amy’s arm containing 35 nearly invisible hookworm larvae. There was a remote possibility of a severe, potentially life-threatening allergic reaction as they entered her body, Aglietti explained. He had an adrenaline shot handy should that occur. They waited an hour, chatting, until Aglietti deemed things safe, and then he drove them back to San Diego.
About 10 weeks later, Amy’s bone-deadening exhaustion, a symptom of multiple sclerosis, began fading. She told her neurologist what she’d done. To her surprise, he was familiar with the background research, but he was nervous about her decision. Whenever she visits, he offers new drugs. “I have politely declined,” Amy told me.
Amy’s neurologist didn’t respond to my queries, but her family-practice doctor corroborated her account, adding, “As long as a patient is making an informed decision, and understands the risks, then something is worth doing if they decide it’s worth doing.”
What most frustrates Amy, Vik and other helminth users I spoke with is that while they have found something that helps them, there’s little willingness from mainstream doctors to consider it. Vik laments that sick people might be removing lengths of their intestines when a therapy exists that might help.
As it happens, a company called Coronado Biosciences did test Joel Weinstock’s pig whipworms. It ran the largest trials conducted to date, comprising 250 participants with Crohn’s disease. But in contrast to Weinstock’s earlier, smaller studies, which showed an almost miraculous curative effect in Crohn’s — 72 percent experienced remission — these studies showed no benefit at all. The company, now called Fortress Biotech, hasn’t released details from the study, but it has dismissed criticism — Weinstock, for example, thinks the trial should have started over because of an unusually high response among those taking a placebo — as wishful thinking. “These ‘believers’ are being fooled by randomness,” a spokesman for the firm said in an email.
Last year, however, Alex Loukas, the parasitologist in Australia, published a small study in which hookworm infection seemingly cured celiac disease, an autoimmune disease of the gut triggered by the gluten protein, found in wheat and other grains. He gave 12 celiac volunteers 20 hookworm larvae each. Once the worms established themselves, he began feeding the volunteers incrementally larger quantities of foods with gluten. At the one-year mark, eight participants who previously couldn’t eat any gluten without diarrhea and worse could now eat a bowl of pasta without problems.
Celiac disease occurs when a person’s immune system mistakes wheat protein as dangerous and attacks. This unbridled aggression begins to destroy the gut. How exactly the parasites stopped the disease remains somewhat mysterious. Studies suggest they hijack white blood cells, transforming them into soothing cells that prevent inflammatory disease. But research by P’ng Loke also indicates that they commandeer the microbiota, the community of microbes in the intestinal tract. In animals, parasites increase counts of anti-inflammatory bacteria thought to prevent a range of disorders, including asthma and colitis. And deworming people causes an immediate decline in those same bacteria, Loke has found, perhaps increasing their vulnerability to inflammatory disease. He thinks parasites do this, in part, by increasing the secretion of mucus, which selectively feeds anti-inflammatory bacteria. Loukas and his colleagues have received funding for a larger celiac trial, but he sees the field moving away from the use of live parasites, toward the identification of the molecules they secrete.
For helminth users, this push toward worm-derived pharmaceuticals is cited as justification for the underground’s existence. People are sick and suffering today, they argue. Are they to wait for years or decades that they may not have for a worm-based pill when there’s something that might work now?
A few years ago, I acquired my own hookworm colony. I was researching what would become my 2012 book, “An Epidemic of Absence,” about the rise in allergic and autoimmune diseases. I have a number of immune-related disorders — peanut allergy, hay fever and an autoimmune condition called alopecia universalis that has left me mostly hairless — that would serve as test cases.
Was I afraid? I knew that a number of parasitologists, well versed in the terrors of hookworm infection, had intentionally infected themselves. When you learn enough about a parasite’s biology, amazement and curiosity gradually replace fear and revulsion.
So one cool early-winter day, I walked across the border to Tijuana, accompanied by Garin Aglietti. In Jorge Llamas’s clinic, I riffled through several months of tests showing that Aglietti, my hookworm donor, didn’t have H.I.V., hepatitis or Strongyloides stercoralis, a particularly unpleasant parasite that, like hookworm, infects through the skin but which, unusually among helminths, can also multiply in the body. Then Llamas pressed a bandage against my arm containing, he said, 30 larvae. I felt the well-known hookworm itch, a slightly tingly, almost stinging sensation as they burrowed into my skin.
Over the next few weeks, as the larvae made their way to my small intestine, I felt as if I had a mild flu. Cramps, a little diarrhea, headaches and malaise followed. The symptoms lessened over time, and for a month or so during hay-fever season that spring, my sinuses were remarkably clear. Seemingly overnight, a patch of eczema on my hand also disappeared. Fine peach fuzz sprouted here and there on my body.
But those were the extent of the benefits. And late in hay-fever season, I was suddenly stricken by full-blown seasonal allergies. My eczema returned with a vengeance. I thought I’d lost the parasites, but they slowly reasserted control over my sinuses, although never quite as powerfully as during that initial period. I kept the colony going for over a year, during which time the benefits gradually waned while the symptoms — an occasional ache in the pit of my stomach and sporadic malaise — never completely dissipated. Ultimately, the benefits were too variable and the side effects too unpleasant to justify continuing.
When people have written me over the years asking for advice, I point out that I’m not a doctor, and I urge skepticism. It’s possible, I say, that parasites worsen your condition. I interviewed one young man with Crohn’s who gave himself hookworm, lost weight and became so anemic that he required emergency blood transfusions. I spoke with others who improved for a while but then relapsed.
But I don’t think that my warnings have dissuaded many people, for the simple reason that they’re desperate. It’s tempting to dismiss them because of this desperation. And certainly it’s possible that cases of remission are a result of the placebo effect, that parasites don’t help and that the community of helminths users is gripped by a self-reinforcing delusion. It’s also possible, though, that parasites can treat a subset of patients with autoimmune and allergic diseases, and that through self-experimentation, sick people are figuring out who’s in that group.
Today the members of the underground community infecting themselves with parasites find one another on Facebook groups with names like “helminthic therapy support” and “helminth incubation.” They ask questions about which diseases respond to helminths or see wrenching posts from people who recently acquired hookworm, felt terribly ill and now wonder why their joints hurt more than before. Others cheer them on, sharing their own experiences and pointing out that symptoms often worsen before they feel any better.
Success stories, when posted, invariably inspire a chorus of congratulations followed by questions — which species worked the best? Moderators curate up-to-date lists of these successes, some of which link back to their authors, making them somewhat checkable. They also include failures, in an attempt at balance. Documents list substances that users have found may accidentally kill parasites, like oregano oil and nitrous oxide.
The operating assumption in this world seems to be that parasites usually work. A moderator once politely asked that I stop referring to helminths as parasites and call them “symbionts” instead. And the social dynamics of these forums can strike some as odd. “There’s pressure to be positive and cheerful about it all the time,” a 30-something librarian who successfully treated her autoimmune thyroid problems with hookworm told me.
At the same time, these groups direct participants to a remarkable amount of scientific information, including numerous peer-reviewed articles. Particularly intriguing are the protocols based on users’ experiences. If you have a terrible reaction to hookworm — which isn’t uncommon — you might start over with smaller doses, and gradually introduce larvae over a longer period of time. Different organisms might also work for different disorders. I spoke with one British scientist, a biologist, who found that hookworm helped an inflammatory condition affecting his liver, but not his ulcerative colitis. Only when he introduced whipworm, which lives at the site of the ulcerations, did his colitis diminish.
At some point, I learned of a private online group where parents discussed treating their children with helminths. After my own experience, I couldn’t imagine intentionally giving my child a parasite, so I was surprised. Many members were mothers; some had immune disorders themselves. A few incubated their own parasites. Everyone I spoke to had given helminths to themselves before their children. Their children had disorders like eosinophilic esophagitis, which can make swallowing food difficult; severe food allergies; and a neuropsychiatric disorder with O.C.D.-like symptoms called Pandas. In several instances, conventional treatment had failed. The parents viewed the potential side effects of parasite infection as milder than the diseases already afflicting their children, and less dangerous than some of the drugs they had already tried. And they claimed to have seen impressive results with parasites.
Some were experimenting with a new organism, a tapeworm native to rats called Hymenolepis diminuta. A British company called Biome Restoration sells it. Depending on the dosage, an order can run just $40. Don Donahue, a radiologist in eastern Tennessee, founded Biome with two other passionate helminths users. He had long suffered from nasal inflammation and obstructive polyps. But just three weeks after acquiring 30 hookworms in Tijuana, he told me, the symptoms improved overnight. “It was like someone slapped me in the face,” he says. He started cultivating them at home for his own use. Spurred in part by the sick people he saw at work, Donahue then decided to make helminths more widely available.
The hookworm Necator americanus (“American murderer”) wasn’t ready for “prime time” in his view. “I really honestly hate hookworm,” he says, because some of the side effects are so bothersome. “But I’m sick without it.” So Donahue settled on what he considered a “gentler” organism, Hymenolepis diminuta. Yet even as he put most of his life savings into starting Biome Restoration, he has kept giving away parasites freely. Of everyone I spoke with, Donahue perhaps most fully expresses the ethos of enthusiastic sharing so often evident among the community of parasite users. I interviewed one young woman suffering from Crohn’s whom he met running at the park and gave a supply of the rat tapeworm. Her Crohn’s eased, she gained weight and, after years of trying, she became pregnant. I spoke with a former snowboarder in Portland, Ore., stricken with a painful autoimmune disorder of the spine called ankylosing spondylitis. That man, Scotty Wittlake — he wanted me to use his full name — told me his condition improved following his self-innoculation with Donahue’s hookworm.
“Citizen scientists are pushing this forward,” says Donahue, who acts more like an evangelist than an entrepreneur. He seems to want to share the miracle he’s found, to spread the word and help others. Biome Restoration has no robust safety data nor any evidence that rat tapeworms help with anything. And parasites that find themselves in unfamiliar hosts can, in theory, cause significant disease and, in rare cases, even death. (In March, the F.D.A. extended an import alert, which already applies to hookworm and whipworm, to tapeworm.) But the company, which seeks to make a more affordable helminth available to more people, is trying something few others have: It is engaging with regulatory authorities to legally sell its product in Britain. The underground is pushing its way aboveground.
An earlier version of this article misidentified a drug taken by a patient who had ulcerative colitis. It was mesalamine, not sulfasalazine.Moises Velasquez-Manoff is the author of “An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases.”Original Source: New York Times