May 21, 2009 7:46 pm US/Pacific
Patients On Hookworm Therapy Swear By Treatment
(CBS 5)
Eating worms. It's the stuff of legends.
In the classic movie "How to Eat Fried Worms," Billy accepts a dare to eat ten worms in the course of one day. And each worm is prepared in such a disgusting manner, that kids watching each successive munch should be totally grossed out.
However, in real life, an experimental therapy involving helminthes or hookworms is not grossing out very sick patients and their families.
They're not trying these creatures as a dare, but as an attempt to improve their health in the face of life-threatening diseases.
Musician Scott Richards and artist Debora Wade are two Bay Area patients on the hookworm treatment. Richards and Wade both suffer from an inflammatory bowel disease called Crohn's. When faced with using a parasite as therapy, both patients felt they had nothing to lose.
For starters, Crohn's is an excruciatingly painful immune system disorder that causes the intestines to swell and empty frequently. Some believe the body's immune system is overreacting to food and bacteria that would normally be found in the intestines.
Wade was diagnosed as a child, and says she often goes to the bathroom numerous times during the day, and often ends up bleeding into the toilet. "The pain would be so severe, that I'd just be sobbing," she said.
Gastroenterologist Dr. Jonathan Terdiman of the UC San Francisco Medical Center has treated Richards and Wade for years. Crohn's is a destructive immune disorder, Terdiman said, adding "your body's immune system is over-reactive or hyper-reactive to things in the environment. Most importantly to bacteria that are in your bowel. And you have a reaction that ultimately damages the bowel."
The bowel can rupture, ulcerate, tear or perforate. Patients lose a lot of weight. And there is no cure for this disease. Medications can keep symptoms at bay, but can have serious side effects or even stop working.
Richards said that he and his wife would hear about a medication and then hear about its side effects which in one case, including cancer; and in another case, included a serious brain infection. The choices are draconian.
Wade said, "You get to the point that there's nothing to do to help you, there's no medicine left that works. And all you have to do is suffer, every day and night for years straight."
Both felt hopeless until hookworms came into their lives. Hookworms are parasites in search of a host which can be a human.
In order to live as a parasite inside the human, the parasite must convince the host's immune system to chill and not try to reject it. With hookworms, they secrete a chemical that distracts the immune system, dampening down its response. Hookworms are common in undeveloped countries, places where inflammatory bowel disease is rare.
In the United States, thanks to advances in modern sanitation techniques, hookworms are rare but immune disorders on the rise.
Is there a connection? There could be.
"As we have made things more hygienic," Dr. Terdiman explained, "we may in fact be precipitating an outbreak or an increase in the frequency of these immune disorders."
Studies suggest the presence of hookworms in the human gut may be beneficial, secreting a chemical that turns off an overactive immune response.
But the therapy is not regulated by the Food and Drug Administration.
To fight their disease, Scott and Debora had to procure worms a different way. They both signed up to get infected with the hookworms.
Scott went to Mexico where he met Garin Aglietti who supplied him with hookworms. Aglietti runs Wormtherapy.com.
Aglietti believes patients who contact him are "true pioneers," he said. "(They're) going off the medical grid. That most doctors have no idea of this therapy. In fact, they've never seen a hookworm."
Aglietti, who calls himself a gastrointestinal ecologist, takes clients across the border where he gives them a band aid to put on their arm.
On the gauze on the band aid, there is hookworm larvae.
Scots said he experienced some itching where the band aid was, which he understood, was the larvae making their way into the blood stream.
What happens next is the hookworms then travel from the blood stream into the lungs, where once there, causes the patient to naturally cough. Patients then cough the microscopic helminthes up into the throat, then swallow them, and this is how hookworms get to the intestines, where they latch on, and they begin to mature.
Wade got her hookworms directly from a business in Santa Cruz. The business, Autoimmune Therapies, is run by Jasper Lawrence, who guarantees infection for three years if you buy the helminthes through him. One dose costs $3,900.
Both Richards and Wade say they didn't have to wait long to feel relief.
Richards explained waking up and the pain suddenly gone. For Wade, she needed to be reinfected, but today said she can eat foods that patients with Crohn's could never eat: pizza & Thai food for example.
And, while helminthes therapy is not regulated by the FDA, Dr. Terdiman admits he is an interested observer in all this.
"It's not a therapy that I can officially endorse or condone," Dr. Terdiman said. "But at the same time, there is a growing body of science that suggests that this makes some sense. It's not a crazy idea."
Some believe the therapy may help a whole host of immunological diseases, including asthma, allergies, even multiple sclerosis. But the hard evidence is lacking.
Wade believes it's because no one is willing to fund research involving helminthes. She said few researchers are looking into hookworms as therapy, and that she's not willing to wait for the results.
"The options we have are just so pitiful, and when millions are spent for the options, and then not put any money into this research, I mean I'm not frustrated, I'm extremely angry," she said.
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