Hooked on hookworms (and other parasites)
Patients go where (most) doctors fear to tread, and sometimes new therapies follow
Its as if Mark Davis just cant help himself. The Northeast Portland naturopathic physician keeps pushing a little bit harder on the ick factor.
A few years ago, Davis began helping patients perform fecal transplants, a therapy that is pretty much what it sounds like taking the poop from people with healthy digestive systems and getting it into the guts of people who suffer gastrointestinal diseases such as colitis. At the time, traditional physicians wouldnt, well, touch it.
Today, fecal transplants are well accepted in mainstream medicine, as is the idea that a healthy gut needs a variety of bacteria and other organisms.
Now, Davis is on to a new unconventional therapy called helminths. Hes advising people on how to infect themselves with microscopic worms that will live in their guts and possibly combat a variety of diseases that are the result of malfunctioning immune systems.
You currently wont find a Portland physician willing to treat patients with hookworms and whipworms, but you might in a few years, say the few U.S. researchers studying the critters.
As with fecal therapy, hookworms are being introduced and used in human experiments not at university medical centers, but by patients people suffering diseases that have traditional medicine stymied who are willing to try something different.
Some of these unconventional therapies turn out to be bogus and some become internet scams. But sometimes, and increasingly, patients are pushing doctors who are pushing lab scientists on new breakthrough treatments.
Thats what happened with fecal transplants, and it might be happening with hookworms. In the process, it also might be remaking our concept of how medicine is supposed to work.
We need to embrace the patient who is doing research, says Dr. Daniel Kalb, a family practice physician in Franklin, Tennessee. Kalb is convinced that helminths represent a breakthrough therapy, and hes using hookworms to treat patients. Now, he says, medicine has to start accepting some systemic breakthrough of its own.
We are not the know-alls as physicians dictating what should and should not be done, Kalb says. We are there to say someone has an idea Ive got cancer, and I want to do IV (intravenous) Vitamin C therapy. Your job as a physician is not to say its not proven, but to say, Let me look into it, see if it is safe, is there any evidence that shows it may be beneficial, and what are the risks for doing a procedure and what are the risks of not doing another treatment.
First theory to make sense
Thats precisely the type of response that Northeast Portland resident Scotty Wittlake was hoping to hear from his rheumatologist recently. Wittlake, active to an extreme, once a professional snowboarder, started feeling pain in his hips and back about 20 years ago, but nothing he couldnt manage with exercise and stretching. Eventually the pain worsened and walking became difficult.
A local rheumatologist diagnosed a rare autoimmune disease (where the immune system attacks healthy body parts) called ankylosing spondylitis, sometimes called bamboo spine. Wittlakes vertebrae were fusing together. His immune system was malfunctioning and attacking his spine. He was told that once the whole spine was fused, walking would turn into shuffling, and there was no cure.
Drugs to suppress the immune system might slow the onset of the disease, but Wittlake was scared away by the side effects that would result from having his immune system compromised. So he spent a year researching the disease and every therapy anybody had ever considered for it.
Which is how Wittlake came across helminths microscopic worms. Helminths are a tantalizing theoretical solution to a medical trend that has many scientists stymied.
A number of studies have shown that as infectious diseases have been brought under control through better sanitation and elimination of parasites, diseases connected to malfunctioning autoimmune systems have increased. Allergies, for instance. And asthma.
A study of germ-free mice raised in sterile environments, for example, found they were unusually prone to inflammatory and autoimmune diseases, says Lisa Sardinia, a microbiology professor at Pacific University. The mice seemed to lack certain gut microbes that help keep the immune system from overreacting to invaders.
Thats where hookworms come in. Theyre parasites the very creatures modern medicine has worked to eradicate in order to eliminate diseases such as river blindness. But some hookworms might not be so evil, the new theory goes. In fact, they might be necessary for regulating a healthy immune system by calming inflammatory attack responses.
The idea is that the bodys immune system will be so busy attacking a natural parasite one it has spent millenia evolving to attack that it will ignore other, harmless triggers such as pollen, cat hair or peanuts, says Sardinia, who offers a presentation to laypeople on The Human Gut Microbiome: Do These Bacteria Make Me Look Fat?
In third-world countries, where people all carry high parasite loads and babies are more likely to eat dirt or otherwise expose themselves to helpful bacteria at a very young age, the rate of allergies and asthma is much lower than in overdeveloped, hyper-clean countries like the United States, Sardinia says.
So hookworms might help rebalance the flora and fauna of his gut and reinvigorate his immune system, learned Wittlake, who was suffering from an immune system disease.
This is the first theory Ive even heard of that makes total sense to me of why autoimmune diseases even exist, he says.
But as far as Wittlake could find, nobody had tried using hookworms to treat ankylosing spondylitis.
Nevertheless, in February of last year, Wittlake, 37 and the son of a physician, infected himself with parasites that had been mailed overnight free of charge from a physician in Tennessee. Due to federal Food and Drug Administration regulations, it is illegal to sell helminths within the United States, but Wittlake was able to tap into a growing hookworm underground.
The invisible worm larvae came in a small vial of distilled water. Wittlake used a pipette to put the water on a bandage, which he secured to his forearm. Within minutes his arm started stinging and itching. The worms were burrowing into his bloodstream.
Wittlake says he felt spacy that entire day. He wasnt optimistic when he first tried the therapy but he was desperate for something to halt his steady physical decline. He knew that if he suffered a bad reaction he could take antiparasitic drugs to kill the helminths in his gut.
By March, Wittlake was feeling worse than usual, if anything. By May he started noticing improvements in his mobility, but still wasnt convinced it was the hookworms, since his disease, like many autoimmune diseases, had always featured periods of calm followed by relapse. By late last summer he took a course in wilderness emergency response and rode his bike from his Northeast Portland home to St. Johns with little pain.
In July, Wittlake took a second, larger dose of hookworms after incubating the worms eggs from his own feces. He bought a microscope so he could count out 30 worms and applied them to his arm.
By fall, Wittlake says, he was walking erect. By December, he was snowboarding pain-free on Mount Bachelor. He took a third dose a month ago. He has shared his worms with two friends suffering from autoimmune diseases.
But Wittlake has also learned to approach his therapy with a scientists caution.
In third-world countries, for example, worm infections are a significant cause of illness, if not death, Sardinia says. The accompanying diarrhea, weight loss, fatigue and anemia can severely impair childrens physical and intellectual growth, with malnutrition often contributing to the problem, she says.
Wittlake understands and respects that helminth therapy isnt yet officially proven. But? The benefit Ive gotten is beyond my wildest fantasies, he says. It has literally given me and my wife our lives back.
One thing Wittlake doesnt have back is his rheumatologist.
He refuses to even acknowledge its a possibility, and thats really, really frustrating, Wittlake says.
Naturopath Davis has been more than willing to see Wittlake. He even provided a prescription for anti-parasitic medications just in case.
That was huge, Wittlake says. Someone in the medical field that knew what I was doing, who was supportive and didnt think I was crazy or dumb for doing it.
Davis says local primary-care physicians who arent yet ready to prescribe fecal transplants or helminths routinely refer patients to him who are suffering from gut disorders. Hes sympathetic and recognizes that medical doctors have malpractice concerns that naturopaths dont.
They are in a system where they can only really recommend FDA-approved therapies without the threat of losing their licenses.
While he cant legally prescribe helminths or sell them to patients, Davis has become convinced they are the next wave of alternative therapy, even as he finds his patients often unwilling to consider them.
Maybe its the ick factor, he says. People with celiac and MS come to me and say, Im interested in fecal transplants. And I say, If you really want the best chance of a good outcome, consider helminth therapy. A lot of them are at peace with someone elses poop in their rectum but the idea of worms in their gut still freaks them out.
A helminth in every house
One of the most high-profile helminth advocates has been William Parker, a Duke University immunologist who believes if parasitic worms are going to enter mainstream therapy, it will be patients and the media leading the charge.
The public consciousness is what youre shooting for, says Parker, who says worldwide there are about 7,000 people introducing helminths into their bodies, but eventually, we all will.
He says there is good anecdotal evidence that helminths can help patients with Parkinsons disease, anxiety, depression and migraines, allergies and a variety of other intestinal and autoimmune diseases.
Twenty years from now everybody is going to have a helminth, and no insurance company will begin to cover you if you dont have your helminths, Parker says. Were very confident in the science, that every single human being needs a helminth. Its part of our biology. There are organisms missing from our environment right now that we need for normal function.
Dr. Joel Weinstock, chief of gastroenterology at Tufts Medical Center in Boston, isnt nearly as certain we will all be using helminths, even though he believes they can be effective. Weinstock was part of a team that conducted what is, to date, the only large, double-blind clinical trial on helminths, as a therapy for colitis.
The worms seemed to help patients but the studys results were inconclusive, Weinstock says, because even those patients in the control group, not receiving helminths, showed improvement a huge placebo effect.
Patients who go for this tend to be enthusiastic and enthusiasm causes false positive reports, Weinstock says.
Weinstock doesnt think pharmaceutical companies are going to pay for more studies. Today, he is focused on finding the molecules that worms produce and discovering how they help regulate immune systems. Then he can go to pharmaceutical companies with a potential medicine, instead of worms.
If it became a pill it would have less resistance, he says. Youre not swallowing a worm, youre swallowing a worm molecule.
Open to alternatives
While hookworm therapy seems to have helped a number of people with autoimmune disease, Sardinia says, there might be better ways to address the problem.
Reducing the number of Caesarean-section births could be a start because C-sections deprive babies of a healthy supply of the right kind of gut bacteria, which are usually absorbed from the mothers birth canal as the baby passes through, Sardinia says.
In some birth settings, its now standard practice to swab the nose and mouth of C-section babies with vaginal bacteria in an effort to establish a healthy microbiome, she says.
Other tactics could include more breast-feeding (breast milk contains special sugars that feed the gut microbiota) and a reduction in the use of antibacterial cleaners, Sardinia says. And, of course, more dirt in the diet would be effective.
But these are all ways to head off autoimmune diseases before the start. Those who already have such a disease might want to start doing homework on alternative therapies.
Family practitioner Kalb is one of the countrys few medical doctors who are recommending helminths (not selling or officially prescribing them, which could put his license at risk). Hes currently treating six pediatric patients with the worms, for ailments ranging from Crohns disease to pediatric autoimmune neuropsychiatric syndrome (PANS), which starts with an infection but can leave children with obsessive-compulsive disorder and tics.
Kalb is convinced helminths anti-inflammatory properties can help autistic patients, and he has a practice full of patients who have done their own research, want to try something theyve discovered online, and have been told by their own doctors that they will need to find a new physician if they want to start experimenting on themselves. That wont do, in Kalbs view.
We need this shift in thinking because we are stuck like hamsters on a treadmill, just going around the same circle, he says.
Pacific University among local colleges exploring alternative therapies
Duke University immunologist William Parker says helminths will gain the acceptance they deserve once a major clinical trial proves their value for one immune-related disease. Tufts Medical Center gastroenterologist Dr. Joel Weinstock says that trial probably will never be funded.
David Schleich says he knows where such a study could take place the National College of Natural Medicine in Southwest Portland, where he serves as president.
Naturopaths have been focusing on patients gut health for years, Schleich says. They were well ahead of conventional physicians in talking about the dangers of wheat and other immune-related foods, and theyre ahead of most doctors on the subject of what is being called the gut
biome, which includes parasitic worms.
In recent years the Helsgott Research Institute at NCNM has begun conducting clinical trials funded by the National Institutes of Health. Most of their studies focus on holistic interventions such as mindfulness-based stress reduction for people with multiple sclerosis and therapeutic mud-pack therapy for knee osteoarthritis.
Conventional medical researchers might have trouble finding patients willing to put hookworms into their bodies as part of an experiment. Not so at the NCNM.
We have patient populations likely to sign up for a trial on helminths, Schleich says.
He says because of malpractice laws, naturopathic physicians who wanted to try new therapies always have had more latitude than medical physicians. Now that they have begun documenting their findings, the therapies used by naturopaths are gaining more acceptance among doctors.
In fact, a local nonprofit called the Oregon Collaborative for Integrative Medicine is bringing together representatives from Pacific University, Oregon Health & Science University, OCNM, University of Western States, and the Oregon College of Oriental Medicine to encourage a free exchange of ideas among the different health providers.
Schleich says it will become more common for patients to push their physicians to try new therapies. Women and midwives, not obstetricians, began advocating for more natural childbirths when C-sections became too common, he says.
Smart patients are now able to do serious research on the internet, and physicians often dont have the time to keep up on therapies that havent yet reached the mainstream, according to Schleich. Even personal devices like Fitbits are providing people with information that in previous generations only their physicians would know.
Major pharmaceutical companies have figured this out, Schleich says, or they wouldnt be spending so much money on direct-to-consumer drug advertising.
That innocence of relying on the expert is gone, Schleich says. Its silly. Its not necessary any longer.
The original version of this story appeared in the Portland Tribune on Thursday, April 21. This version includes additional reporting by Jill Rehkopf Smith.