Fishing for a Cure
Diary of a Worm
Parents will go to incredible lengths to help their children when they’re sick, so when mainstream medicine fails to ease a child’s suffering, many parents predictably search for answers elsewhere. For youngsters with severe or life threatening food allergies, the mainstream has so far offered few options. Avoiding allergenic food is the only established method of preventing reactions and the enduring possibility of accidental exposure keeps parents constantly vigilant.
As a result, some parents are turning to an emerging treatment for their children—or themselves—called helminth therapy, which takes the notion of alternative medicine to a whole new level. Helminth therapy is a benign moniker for a treatment that’s bound to make some people queasy: Introducing the eggs of parasitic worms (helminths) into the body. The eggs hatch and take up residence in the intestines in the hope that they will modulate a hyperactive immune system.
This is what Carmon, a mother who doesn’t want her last name revealed, is doing for her 6-year-old son, Cole. The little boy has Eosinophilic Esophagitis (EoE), an allergic disease in which there is inflammation and an unusually large number of eosinophils—a type of white blood cell—in the esophagus. Patients with EoE experience a variety of symptoms. Very young children may vomit, have poor weight gain or feeding problems. Young children may vomit, complain of stomach pain or refuse to eat. Older kids may have problems swallowing or get food stuck in their throat or esophagus. According to the American College of Allergy, Asthma and Immunology (ACAAI), about 50 percent of patients with EoE also have seasonal allergies or asthma and many others have eczema or food allergies.
Cole was diagnosed with EoE when he was 14 months old. Problems began months before when he started eating solid food—he had a great deal of difficulty with it, often gagging and vomiting. Medication for suspected reflux was ineffective. Doctors performed an upper endoscopy—a procedure in which a lighted, flexible scope is inserted through the mouth to view the upper gastrointestinal tract—and confirmed that Cole had EoE.
After a long and winding medical journey, Carmon eventually sought care for Cole at the Gastrointestinal Eosinophil Diseases Program at Children’s Hospital Colorado, one of the leading institutions specializing in EoE. Carmon knew that food allergy could be a big part of the equation for people with EoE and for Cole, that turned out to be the case. Testing at Children’s Hospital revealed that there were very few foods to which Cole did not react.
“He was down to 12 foods,” Carmon says.
Cutting out everything but those items helped for a while. But then, Carmon says, “Cole started reacting to those, too.” She believed it was only a matter of time until he would lose them all and be forced to use a feeding tube—a method of delivering liquid nutrition directly to the stomach of people who have difficulty eating. She started researching alternatives and discovered helminth therapy.
Diary of a Worm
Helminth therapy is based on what was originally termed the “hygiene hypothesis,” now sometimes called the “biome depletion theory.” Estimates of the number of cells in the adult body range from 10 to 100 trillion—and there are at least 10 times that many bacterial cells living within each of us. For every gene in our genome, there are 100 bacterial ones. This is our microbiome—and researchers are just beginning to examine how its composition can impact our health.
The biome depletion theory says that, as a result of better hygiene—afforded by post-industrial advances, such as toilets and water treatment facilities—people in developed countries are no longer exposed to, and therefore no longer harbor, some of the microscopic bacteria with which humans have historically had a symbiotic relationship. As a result, people in developed countries are missing some of the key microbes that keep the immune system in balance.
Normally, the immune system’s white blood cells help protect the body from harmful germs. To destroy these germs, the immune system produces antibodies, also known as immunoglobulins (Ig), to identify and neutralize the germs. It’s a complicated system, and not without misfires. In the case of food allergy, the immune system mistakenly decides that a food is harmful and creates antibodies in the attempt to render it harmless. In autoimmune disorders, the immune system makes antibodies when it mistakenly decides that the body’s own healthy tissue is harmful.
The biome depletion theory holds that reintroducing some long-lost little friends back into the body—in small numbers so as not to cause illness—will dampen inflammation. Exactly how helminths do this is not yet fully understood but they seem to activate immune regulatory mechanisms, as well as enhance mucosal barrier function.
The scientific research thus far is extremely encouraging. In 2005, Joel Weinstock, MD—now chief of the division of gastroenterology/hepatology at Tufts New England Medical Center—published a paper showing that in a randomized, double-blind, placebo-controlled trial (the gold standard in research), Trichuris suis ova (pronounced try-kyuriss soo-iss oh-vah) (TSO), which are microscopic pig whipworm eggs, was safe and effective in the treatment of ulcerative colitis, an inflammatory bowel disease.
Since then, evidence has been accumulating that helminths have the potential to treat other immune-mediated conditions, such as Crohn’s disease. One study has shown that, in patients with celiac disease, hookworm infection suppressed the inflammatory immune response after a gluten challenge, although it didn’t result in a clinically significant suppression of pathology. Studies are now underway to see if TSO can help conditions like multiple sclerosis and autism, both of which may involve an underlying immune dysfunction.
Type of Treatment
Helminth research has primarily focused on TSO, as this particular type of microscopic worm doesn’t naturally infect humans and can’t reproduce in the body and cause sickness. TSO dies after two weeks, leaving the body via bowel movement. This makes TSO naturally self-limiting, often reassuring to patients, but the treatment has to be taken every two weeks.
Due to the high cost of TSO (approximately $12,000 per year), some are turning to another helminth called Necator Americanus (NA), also known as hookworm.
Unlike TSO, hookworm is a human pathogen that, in serious cases, can cause blood loss leading to anemia, as well as protein loss. It was successfully eradicated in the United States around 1910. At that time, approximately 40 percent of school-age children in the South were infected, causing illness significant enough to impact school attendance and lower literacy rates. Neither hookworm nor TSO are legally allowed to be shipped to the United States; however, they are available outside the country.
Carmon decided to use hookworm with Cole. The lower price tag was appealing (about $2,500 for three years of treatment). Plus, some anecdotal evidence suggested that it might be more effective than TSO for food allergy.
No published studies support or refute the efficacy of using helminths to treat food allergy in children—Marie-Helene Jouvin, MD, a researcher at Harvard, has completed the beginning stages of a study on TSO’s effect on tree nut and peanut allergy—let alone studies to compare the effectiveness of one helminth over another. But the good experience of other “worm moms,” in addition to the fact that Cole was so very sick, convinced Carmon to try hookworm.
There are only a few helminth providers in the world, making Carmon’s choices limited. She selected Worm Therapy, a company in Tijuana, Mexico, that inoculates clients with hookworm and/or another bug called Trichuris Trichiura (try-kyuriss trik-ee-ur-uh), (TTO), which is human whipworm.
According to Worm Therapy’s website, “Light hookworm infection is often asymptomatic or has mild-to-moderate complaints.” The most common reactions listed are rash at the inoculation site, fatigue, cough, stomach pain, night sweats, fever, flatulence, diarrhea and fluctuations in weight. Several medications are available that effectively rid the body of hookwork, should the patient desire to stop treatment.
In May 2011, Carmon, her husband and Cole, then 5, flew to San Diego. A representative from Worm Therapy picked them up the next morning in San Diego and drove them to Tijuana, a 17-mile trip. Once at the Worm Therapy office, Cole received seven worms delivered through a patch on the inside of his upper arm.
“It’s like a big Band-Aid,” says Carmon, who underwent the therapy, too, so she could understand what her son was experiencing. “You wear the patch for three hours. It didn’t bother me or him. Just a bit itchy—but not bad.”
They were back in San Diego after lunch.
Take Two Worms . . .
Physicians who treat food allergy may be aware of helminth therapy but most have no direct experience with it. One physician who does, Sidney Baker, MD, has about 75 patients who have either tried or are trying TSO.
Most of Baker’s patients come to him for help with autism. However, he recalls a young patient who, like Cole, had EoE. At 18 months old, the patient could eat only three foods.
“He had no weight gain for six months. He reacted to everything but rice, chicken and carrots,” Baker says. The parents were at the end of their rope and decided to try TSO.
Baker, who recommends lower doses than those suggested in most published information about helminth therapy, says that at first, “All his symptoms got worse.” The parents were about to abandon the experiment but suddenly, the boy got better. “Six months later, he was completely normal,” Baker says. The TSO has allowed the youngster to eat a typical diet for the first time in his life and not have adverse reactions.
Cole’s reaction to helminth therapy has been dramatic as well. Back home after the initial inoculation with seven hookworms, Cole experienced some side effects—periumbilical pain and mild diarrhea—but his food reactions improved. After five months, however, Carmon says, “He regressed a little.” She and her husband decided to return to Mexico and have Cole inoclulated with 20 more worms.
That’s what did the trick, Carmon says. Cole stopped having reactions to his remaining foods and Carmon is slowly adding foods back into his diet.
“According to his doctors, Cole is in clinical remission,” she says, adding that the physicians are “fascinated” that helminth therapy worked.
Judy Chinitz, a certified nutritional consultant, has also seen helminth therapy improve some of her clients’ health. Many are children who have autism. Chinitz reports a fairly predictable clinical pattern. In general, “around 10 weeks after inoculation, gut issues improve,” she says. “At 14 to 16 weeks, there are other improvements, such as better mood and more language and sociability. Some children have even become verbal. It’s fairly dramatic.”
Chinitz has observed that hookworm seems to be more effective than TSO with food allergies. However, she notes, “There are more side effects.” It appears that people who go very, very slowly are better off than those who jump in with a large number of hookworm. Stressing that she offers information, not medical advice, Chinitz recommends that anyone thinking about trying helminth therapy should consult a physician.
Helminth therapy is not approved by the U.S. Food and Drug Administration but one company, Coronado Biosciences, is hard at work on making that happen. It’s developing TSO as a drug for Crohn’s disease. Bobby Sandage Jr., PhD, the company’s president and chief executive officer, says that if all goes well with remaining clinical trials—as he anticipates—FDA approval of TSO could occur by 2016. Coronado isn’t seeking the agency’s approval of hookworm because, in Sandage’s opinion, “FDA would never approve a human pathogen.”
A great deal more research is needed before the medical community considers helminth therapy a safe and effective treatment for food allergy. Yet in a field where options are extremely limited, it is cause for hope.
“Helminth therapy is an intriguing therapy for treatment of eosinophilic esophagitis and other allergic diseases. It has shown promise in inflammatory bowel disease and is being studied as a possible treatment of classic peanut allergies,” says John Lee, MD, co-director of the Eosinophilic Gastrointestinal Diseases Program at Children’s Hospital Boston. “Treatment options for EoE are currently limited to either diet restriction or steroid therapy. If helminth therapy proves to be effective, it will open an exciting new avenue of treatment for this challenging condition.”
As for Cole, helminth therapy has had other benefits, in addition to dramatically improving his health.
“He used to have trouble learning but he is now doing wonderfully in school,” Carmon says. “He used to be fussy and hard to please but now he’s just so happy all the time.”