This is a case study basedon one man’s efforts to cure himself from ulcerative colitis. It describes the debilitating impact of thedisease which are not commonly known. Italso outlines the thoughts leading up to the decision to deliberately useworms.
The take home is that it ispossible to apply this therapy safely and it is easy to actually end. However disease recurrence suggests that thetherapy will be maintained for a lifetime.
We still do not know enoughabout the causes of these horrible diseases to cure them and as describedherein, the present procedures are not terribly useful. In the end the patient is left to his owndevices with a further compromised body.
This report made it on toCNN and comes right after the recently posted items and medical reports derivedfrom this man’s work. It is noteworthythat he has had the disease under control now for six years.
Man finds extremehealing eating parasitic worms
By ElizabethCohen, CNNSenior Medical Correspondent
Wormsare damaging the patient's gut, researchers say, triggering a healing effect inareas affected by ulcerative colitis.
Man's experience treating himself with parasitic worms published in amedical journal
Experimental treatment for ulcerative colitis condemned by some asirresponsible
Researcher: Conclusion is that worms "were able to restore mucusproduction in his gut"
"Sometimesyou really do have to take matters into your own hands," patient says
(CNN) -- One day in 2004, a 29-year-old man with aterrible stomach problem stepped off a plane from the
United States in . He wasn't there for thesights, or the food, or the beaches. He had traveled thousands of miles forworms -- parasitic worms whose eggs he intended to swallow by the thousands. Thailand
His doctor back home had told him his idea wascrazy, that infesting himself with parasitic worms wouldn't do anything to helphis ulcerative colitis, and in fact could make him very sick. Thegastroenterologist had told the man if he pursued this course of treatment, hewould refuse to be his doctor anymore.
"You'll be on your own," the manremembers the doctor telling him.
Indeed, he was on his own, standing in theoffice of a Thai doctor, asking her to pick the worm eggs out of an 11-year-oldgirl's stool.
Ten to 15 bloody bowel movements a day
This month, the man's experience treatinghimself with parasitic worms was published in a medical journal. Depending onwho's telling the story, his journey is one of a brilliant, empowered patientwho found an amazingly effective treatment for himself and possibly others whosuffer the same debilitating disease -- or the dangerous tale of anirresponsible medical rebel who could have killed himself and, by telling hisstory, might be inspiring others to do the same thing. As with any experimentaltreatment, you should not try this at home.
The man -- who wants to protect his privacy,and be referred to only as "the patient" -- was 28 when he startedhaving bloody bowel movements. Soon, he was having 10 to 15 bloody bowelmovements a day.
"I was constantly running to thebathroom," he remembers.
Diagnosed with ulcerative colitis, nothinghelped except high doses of steroids, which because of severe side effects, hecould take only for limited periods of time. Soon, the patient became so sickhe had to quit his job.
o get the best medicalcareCohen on her new book
His gastroenterologist wanted to admit him tothe hospital for an intravenous round of cyclosporine, a potentially helpfulyet dangerous medicine that depresses the body's immune system and can increase the risk for getting cancer later in life.
If the cyclosporine didn't work -- and therewas a 50 percent chance it wouldn't -- the doctor said his last hope was toremove his colon entirely, an extreme measure that would cause him to have tohave a colostomy bag attached to himfor the rest of his life to collect his stool.
"I was really at the end of theroad," he says.
Meanwhile, the patient had gone on theinternet and found an article in a medical journal by Dr. Joel Weinstock, chiefof gastroenterology at Tufts University Medical School, which showed someulcerative colitis patients found relief after ingesting the trichuris suisworm, a parasite that lives in the intestines of pigs.
The patient contacted Weinstock to ask him totreat him with worms, but Weinstock said no, since it wasn't approved forgeneral use by the Food and Drug Administration and could only be doneexperimentally.
Other doctors also told him no.
"One very famous parasitologist in
told me he hadpatients who were immigrants, and he could get the eggs from their stool,"he says. "But he told me for legal reasons he couldn't do it. I understoodcompletely. What if something went wrong and I died? He'd be blamed." New York
The patient became more and more convincedworms could help him. Behind Weinstock's study was this observation:Inflammatory bowel diseases such as ulcerative colitis affect nearly one in 250people in the
United States,but are extremely rare in underdeveloped parts of the world, such assub-Saharan Africa.
Some experts believe parasitic worms might bepart of the reason. When underdeveloped areas become developed, parasiticworms, also called helminths, become less common, and diseases such as ulcerative colitis become more common.
"We're not exposed now to helminths inplaces like the
, and that probably has animpact," Weinstock says. "We've tried to separate ourselves from ournatural environment with our sterile water and our sterile food, and that'ssaved lives, but there are negative consequences." United States
A 'terrible choice'
"I was facing a terrible choice,"the patient remembers, between going with the doctor's treatment idea, which hereally didn't want to do, and looking outside the
for worm eggs to ingest. United States
He contacted researchers in various developingcountries to ask if they could help him get his hands on some eggs. Theresearcher in
was particularly helpful, and he got on a plane to visit with her. Thailand
After he arrived, the doctor in
extracted roundworm eggs from the stool of an 11-year-old infected girl. Shegave the trichuris trichiura eggs to the patient, but he now faced anotherhurdle. The eggs needed to be cleaned in case the girl had hepatitis or someother infectious disease, and the eggs needed to mature for them to be helpful.It was up to him to clean the eggs and grow them in a process called"embryonation." Thailand
"There wasn't much guidance on how to doit, since most people are trying to destroy these worms, not grow them,"he says.
But he managed to do it and ingested first adose of 500 eggs and then another of 1,000. The worms could live in hisintestinal track for many years.
Three months later he had fewer bloody bowelmovements, and soon, none at all. His bowel movements were normal. He feltfine.
From time to time, when his ulcerative colitiswould flare up again, he'd extract eggs from his own stool, and clean,embryonate and ingest them. Again, his symptoms would go away.
A reluctant researcher
By 2007, having made so much progress, thepatient wanted to document his journey scientifically, and he contacted variousresearchers to help him, including P'ng Loke, who was then a postdoctoralfellow in immunology at the University of California-San Francisco.
"He e-mailed me, and I ignored it,"Loke remembers. "I was very skeptical at first, but he convinced me tohave lunch with him."
At their meeting, the patient laid out hisstory in more detail, and Loke became fascinated.
"It's an amazing story, and he's quitepossibly one of the smartest people I know," he says.
By the end of their meeting, they'd started tohatch a plan: Loke and his team would do colonoscopies to track the patient'sulcerative colitis and look for the presence of worms in his colon.
The researcher, now an assistant professor ofmedical parasitology at
,and his team did a colonoscopy on the patient, which revealed an abundance ofworms and no signs of ulcerative colitis. New York University Langone Medical Center
When the patient suffered a flare-up of hisdisease in 2008, a colonoscopy showed fewer worms and typical signs ofulcerative colitis.
When he ingested more eggs, a thirdcolonoscopy showed the colitis was once again in remission.
The study was published in this month'sScience Translational Medicine.
Why worms might work
To figure out why the worms seemed to behaving this beneficial effect, Loke and his colleagues took a close look at thepatient's immune system after he ingested the worm eggs. After ingestion, hehad an abundance of cells that produce a protein called interleukin-22, whichis important in healing the mucosal lining of the intestines.
"Our main conclusion is that the wormswere able to restore mucus production in his gut," Loke says, adding thatthe mucus lining protects the intestines from harmful bacteria.
But others are not so convinced.
"The impact of mucus alone is not ascientific explanation for the possible improvement attributed to theworms," says Dr. Stephen Hanauer, a member of the board of trustees of the
of Gastroenterology. American College
Charges of irresponsibility
Hanauer, chief of gastroenterology, hepatologyand nutrition at the
, warnedagainst making too many conclusions from one man's positive experience withworms. University of Chicago
"We don't make medical recommendationsbased on a single case report," he says.
was "irresponsible" for putting out a press release about the study,and criticized media outlets such as CNN for reporting on it. New York University
"It's ridiculous and incrediblyinappropriate," he says. "You're driving people to go on the internetand buy these worms, and these are potentially pathogenic organisms. These eggscan invade the systems of people who are immune suppressed and cause infections."
Loke says he and his team pointed out in thepress release that the worms might hurt some people rather than help them.
"I agree no one should be trying tochange their treatment" based on the paper's findings, Loke says.
The patient says he is also concerned othersmight try to copy him with potentially disastrous results, and so declined toexplain exactly how he cleaned and embryonated the eggs.
He says he knows he took a risk by ingestingthe eggs from a young girl in
,but for him it was a better option than treatment with drugs that havepotentially dangerous side effects, or the removal of his colon. Thailand
"Sometimes you really do have to takematters into your own hands," he says.