by Rob Dunn
The Dirty Realities of What to Do When You Are Sick and Missing Your Worms
Whether or not you suffer from diseases related to your immune system, millions of other people do. The afflicted have only so much patience for the slow pace of science. Waiting for theory can be like waiting to die; both are deeply unsatisfying. Debora Wade was not one to wait. By 2006 or 2007, she had read up and knew about the missing worms and Joel Weinstock. She was sick of waiting and not knowing what was on the horizon, but mostly just sick of Crohn’s disease. For twenty grinding years, she had walked around not knowing when she would have to run to the bathroom. She wanted to get better, but like nearly everyone else with Crohn’s, she had few options. Her life had gone on, getting more and more besieged by the daily realities of Crohn’s.
Debora reached the point where she felt like she was willing to do anything. She had read about Weinstock’s glasses full of Gatorade and whipworms. The idea was disgusting, and yet somehow it was as appealing as any other option. The drugs she was taking for the Crohn’s were not working. Neither was she. She could not. She was sick, housebound, and emaciated. She had “chronic diarrhea, night sweats, and painful bowels.” She could sometimes digest blended soup, but not always. The flavors, it seemed, had been sucked out of her life.
She searched the Internet, went to the library, called friends, talked to researchers, and otherwise turned every stone. She had lost precise count of the exact number and kinds of pills she had taken, but she could remember their consequences. Her doctor told her about another new experimental treatment. This latest treatment offered, as if a kind of punishment for wanting to get better, a high risk of cancer. She started over, looking, asking, and doing what she could. Eventually she circled back to where she had started—the worms. The thought appalled her, but compared to the alternatives, untested and intensive chemotherapy, bone marrow transplants, or worse, how bad could it be? Being dosed with worms hardly seemed more barbaric than what she had already been through. She decided that she would do it, maybe. No, she would definitely do it.
In talking to her doctor, she committed herself to a dose of mail-order whipworm eggs, the same eggs Weinstock’s technician had offered to patients in a glass of Gatorade. But when she went to order the eggs, she found a new problem. The U.S. Food and Drug Administration had made it illegal to ship whipworm eggs, and even if she could get the mail-order worms, they would cost $4,700 for the first two weeks. They then had to be taken again and again, she assumed, although for how long, no one actually knew or knows, to remind the body that the worms were there; $4,700 repeated monthly, perhaps over a lifetime.
Debora was, once more, out of options. Then she heard about a study in Nottingham, England, in which patients were being given whipworms in a double-blind experiment (some patients would receive the worms, others a placebo) to test their effects on allergic rhinitis, asthma, and Crohn’s disease. She called. She tried to stay calm, but could not avoid being a little hopeful. The study was willing to take Americans as patients! She found herself feeling optimistic for the first time. Then she learned about the catch. She would have to visit the United Kingdom six times over the course of a year. In her condition, she could not imagine flying on a plane once, much less six times or more. She was too sick, and even if she paid her way, again, again, and again, she had a fifty-fifty chance of receiving a placebo.
Then she saw it, blinking like a small beacon of Internet marketing hope on her computer screen. You can search for it yourself. The last time I looked, it came up when I typed “treatment for Crohn’s,” “experimental treatment,” and “help” into a search engine. For just $3,900 U.S., Debora Wade could travel to Mexico and have someone give her a dose of hookworms. These were not pig whipworms or even pig hookworms, but instead, good old- fashioned human hookworms, the hookworms that crawl through your skin and into your body, and in doing so can make you anemic or, very occasionally, worse. She found an advertisement offering to give those to you for the price of a used car. Was she losing her mind? This was not modern medicine—it was a guy hawking parasites from a clinic in Tijuana. It was not even clear that he had a medical degree (he did not). Yet what were her alternatives? She was not dying, but the life she had grown up imagining for herself seemed to have been.
She told her doctor about the Mexican clinic, and he told her not to go, though he understood her temptation. Modern medicine is built around the idea of holding back other species, but when the problem is that those species are missing, modern medicine throws up its hands and offers a shrug and another drug. So too did Wade’s doctor. Yet for Wade, it was not just that the worms might make her better; it was that they were, in their way, easier than anything else she had been doing—the pills, the shots, and the constant tending of her body’s reluctant garden. If everything worked, the hookworms would crawl through her arm into her bloodstream, where they would ride past the heart into the lungs, get coughed up from the lungs, swallowed, and then from there make a road trip down into her intestines. In the intestines, they would ensconce themselves and live out their lives, three to seven years or, if she was good to them, even longer. If she happened to get a male and female, they might breed, but they would not increase in number. Their eggs would be passed into her toilet and down into the sewer system of Santa Cruz, California, where she lives. She would not have to take a glass full of whipworm eggs every two weeks. She could just take the treatment once every three years—or maybe less than that, once every decade. The endeavor felt more like adopting a pet than modern medicine—a long, translucent, sucker-mouthed companion animal.
The “treatment” carried risks. Her family reminded her of them. Yet she knew everything she had already been doing had risks. The “cutting-edge” treatments caused cancer or infections. The cutting-edge treatments were just as poorly studied as the worms whose risks had already been weighed across the bodies of millions of people. Their effects, though sometimes rotten, were also predictable—at least it seemed so at the time. So she got in a car with her family and headed south on Route 5 toward Mexico.
As Debora Wade drove to Mexico, many things went through her head. Her doctor had warned her that in Mexico she would have no control over what she was being given. She had no guarantee, he argued, that they would even be hookworms. She had no guarantee where the hookworms had come from. Would the hookworms be clean of other parasites, viruses, and bacteria, for example? She did not and could not know, yet somehow she felt good. She felt as though she had made one of the most important decisions of her life, that for the first time in twenty years she finally, really, had a shot at feeling better.
The man Debora Wade was driving to see was Jasper Lawrence. She had never met him, but she knew his story—everyone seemed to. Once heard, it is unforgettable.
For many years of his life, Lawrence had worked at an advertising agency in Silicon Valley. He was successful, but also sick with asthma, an affliction that caused him to worry, prematurely, about his own death. Whenever he inhaled, his lungs felt fragile to him—one breath away from failing. He had always been sick, even as a child, but lately his health, particularly his asthma, had gotten worse. He was guilty of the usual sin of smoking, but whether this alone was why he was sick or whether he was the victim of some more complicated series of consequences and genes is unknowable. Regardless, though, of how his story is reconstructed, it led him to a point in his life when he was in and out of the hospital and entirely dependent on Prednisone steroid tablets to go about his daily life. Then, unrelated to his health problems, he took a new job. He was excited about the new position and the change it would bring to his life. Little did he know.
In the process of starting his new job, Lawrence had to start a new insurance plan. He needed insurance to pay for his medicine, but his preexisting condition ruled him out and he was left uninsured and scared. He was scared for his life. One can imagine his headstone: “Here lies Jasper Lawrence. He died of preexisting conditions.” He breathed shallow
ly, conscious of each breath.
Lawrence was not yet in a crisis but he saw it ahead of him, looming. His problems made him open to possibilities he would have missed at other points in his life. He was prepared for big change and so when a kind of opportunity presented itself, he did not ignore it. “The change” began on a routine visit to his aunt in the United Kingdom. During the visit, he was up late one night, unable to sleep. Restless but unfocused, he sat down and began looking for solutions on a computer. His aunt had mentioned a BBC documentary about hookworms and diseases such as multiple sclerosis and asthma. As he began looking for the documentary, he found research articles by Joel Weinstock and other scientists. He started reading them, at first out of curiosity and then with a tingling excitement. He doesn’t remember quite what he saw that day. Maybe there was a study about dosages, or how many worms one needed to have in one’s gut to have an effect. What he does remember is that by the time he went to bed, with the sun already rising, he had decided that he was going “to try worms of some variety.” He would, he decided, do whatever it took. At worst, he thought he would look foolish. At best, he would be healed. All night he dreamed of worms, tangling, wriggling, and crawling. They were, at least in retrospect, good dreams.
Lawrence spent the next months reading and rereading whatever he could find about worms and health. He wasn’t a scientist and so, particularly at first, the articles were difficult for him, as they are for most people who decide to take their health into their own hands. The science was hard to understand because of the scientists’ jargon, but also because the scientists themselves didn’t know exactly what was going on, what happened when the proverbial hammer hit the nail. Yet Lawrence, as he read, was ever surer that what he needed was worms. His first practical problems, like those of Debora Wade, were to choose and then get a worm. The science published so far is mute as to whether one kind of worm is any better than another. The options are nearly endless. Testicle-enlarging worms; whipworms; tapeworms, worms that grow to thirty feet in your colon. Choices, choices. Lawrence came to favor using hookworms. Tapeworms, he thought, were the most likely to actually cure him, but they brought the possibility for reinfection. Call him squeamish, but he simply didn’t like the idea of a thirty-foot monster living in his gut, much less the possibility of “passing” such a beast.* His decisions were not quite educated but they would do.
Yet as much as he tried over the next eighteen months, Lawrence could not come up with a good way to get hookworms. At the same time, his confidence that the worms might heal him grew, as did his sense that he was getting sicker. He brooded. He made phone calls. He read more. Eventually, he came to terms with the realization that short of some treatment in a medical setting (which, at the time, did not exist), he needed to get hookworms himself, the old-fashioned way, from someone else. He learned from reading that hookworms were nearly everywhere in much of the poor world and, much to the distress of public health officials, easy to get in those regions, at least when you did not want them. So he decided he would get a do-it-yourself worm. He bought a ticket to Cameroon. In Cameroon, hookworms infect nearly everyone. In Cameroon, all he would have to do was be a little bit incautious and he would get a hookworm. If a little bit incautious did not work, he was prepared to do more.
Lawrence flew to the United Kingdom and then from the United Kingdom to Cameroon. The trip was expensive and bold. Lawrence was a California native, an entrepreneur. He was not the kind of guy who traveled to developing countries, but here he was, arriving in an airport that looked to him more like an old high school than someplace to be charged with the safety of planes. He got out of the plane and the air was hot. He saw poverty everywhere. In the days that followed, he saw fingerless lepers, begging children, bus accidents, and a great and terrible disregard for life. Lawrence was also seeing the irony, though irony is not a strong enough word, of what he was doing. Much of the world, including Cameroon, remains unable to rid itself of the parasites that end lives prematurely and brutally. HIV, malaria, and dengue kill people, destabilize governments, and even precipitate wars. Alongside these other diseases, the worms too are thought to ruin lives. But Lawrence, like Joel Weinstock, whose work he had read, had come to think that the story about worms was more complicated. He had come, with the instrument of his body, to test that belief.
Lawrence stayed with a family he had met on the plane. He explained to them his plan to contract hookworms. They must have thought him mad, but he was hardly the first Westerner to travel half mad to the jungle in search of a cure or treasure. He was not so different from those earlier explorers except that, unlike the rest of them, he wanted to go to the poorest, dirtiest places in the country. He wanted to go there barefoot so that he might contract hookworms. Surely this wasn’t the best way, but if he didn’t get better, he would go broke. If he went broke and ended up without Prednisone, he would die. So he found himself in Cameroon, looking for piles of human excrement to walk through on the chance that in those piles a few worms might crawl into him, through the thin barrier of his soft, urban skin.
Actually, he did not have to walk through fresh excrement. Much to his initial dismay, it took Lawrence several wet, stinking-footed trips to latrines before he learned this important fact. Hookworms take days to mature and so he needed only to walk in older, dry latrines—the places “behind the house” where narrow footpaths end in a hole in the ground or more often a series of piles of toilet paper and shit. As he looked for these places, people yelled at him. They chased him. He defended himself with what, given the half lunacy he was engaged in, stood for reason. But the more he explained, the angrier people seemed to become. The only way this story seems as if it could end is with a fistfight or a stick fight or worse between him and some man out in the excrement piles of Cameroon, the grass up to their waists, hookworms crawling around the ground, a desperate, bloody, mad fight for one man’s survival and the other’s dignity. Somehow it did not. Somehow Lawrence went from latrine to latrine without getting bludgeoned until, one day, he felt an itch on his foot. It was the itch of good luck, the itch of worms crawling through his thin, once-affluent skin, headed, he could only hope, for his heart.
When Debora Wade decided to go to Mexico, she knew Lawrence had gone to Cameroon to seek out his own treatment. She probably also knew the lengths to which Lawrence went to get his worms. Most important, she knew the punch line to his story: that the worms had crawled into his bloodstream, gone through his heart, and made it to his intestines. She knew too that once there, they had somehow engaged his immune system and that the end result was, in some measurable way, the near complete disappearance of his asthma. His immune system no longer attacked pollen. His immune system no longer responded to every allergen. His immune system, in fact, no longer triggered any of the events that had so plagued him. He breathed easily. So seemingly miraculous were his results that he had decided it was his life’s work to help other people seek treatment, not in Cameroon but somewhere nearer his home. He started his clinic in Mexico to distribute worms. Lawrence was a changed man and you could be too, or so the former ad-agency executive’s Web site claimed.
Debora Wade was worried as she headed to Tijuana. She had never been to Mexico before because she had been afraid of getting a parasite. Her overwhelming thought was “What the hell am I doing?” On December 17, 2007, she had made it to San Diego, where she would cross over the border into her new parasitized life. She went with her family to a resort hotel (surely a little pampering is justified prior to intentional infection with worms) where they would relax, but even before she made it to her room, Jasper was there, at the front desk, to greet her, to shake her hand and introduce himself. Tomorrow, the infection would begin.
At the hotel, Wade slept well, but then awoke nervous, her heart pounding in her throat and adrenaline overwhelming her body. She got in a car and drove to the clinic. The neighborhood looked rough. The clinic itself was a two-story house on a busy street, Lawrence’s house. Inside, Debo
ra found Lawrence again, along with a man named Dr. Llamas, who would actually initiate the infection. She waited briefly beside her husband in a waiting room/living room before being ushered down the hallway to a room like you might find in any doctor’s office. The room had a hospital bench like she would have seen at home, covered in white paper. Dr. Llamas was friendly. He asked about her illness. He asked about her health. He sympathized. As he did, a nurse came into the office to take some blood. It was in that moment that it really dawned on her how little control she had over what she was about to be given and what the consequences might be. She was at the mercy of Dr. Llamas and Lawrence, but also of the behavior of an undomesticated group of worms, worms with no interest in her concerns or fate, wild worms. The next day the potential fireworks began. Llamas infected her with, she hoped, wellness. If things went well, the worm larvae—offspring of those larvae currently in Jasper Lawrence—would crawl into her skin. When the procedure was done, she thanked everyone. She collected her husband and headed home.
To date, almost a hundred patients with asthma, ulcerative colitis, Crohn’s disease, and other autoimmune maladies have made the trip Debora made, to this same office. As for Debora Wade, once home, she waited. The whole procedure was done but it was, she had to conclude, less satisfying than she had imagined. For one thing, the travel to Mexico and the treatment itself cost nearly $8,000. For another, the worms, her worms, were donated by Lawrence. It had not initially occurred to her that they would come from someone. Jasper Lawrence passed the eggs that became worms that were eventually given to her. Did she really know Lawrence? Had she checked his credentials? As she replayed the entire scene in her head, she recalled that the man who had drawn blood had dirty nails. The office was, well, not entirely clean either. What had she done?
Once home, she peeled off the bandage, looking for a series of ten dots, points of origin where the larvae had burrowed in. She found a single red dot, but nothing else. The beginnings of this whole endeavor were, to put it lightly, anticlimactic. On the third day, she was very clearly still sick and spent the night on the toilet looking at constellations out the window. More time passed. Christmas came and, with it, a fever, perhaps in response to the worms settling in, her body fighting what her mind so badly wanted. Then she got sicker, both with Crohn’s and now with a fever. She could scarcely consider the thought, but she felt as though she were getting worse. Finally, and even then only slowly, she seemed to be getting better. But it was so hard to tell, to measure progress against hope.