May 16, 2006

Bucking the Mainstream on Crohn’s: Gastrointestinal Doctors Claiming a Bacterial Cause Are Grabbing Patients’ Attention

By Delthia Ricks, Newsday, Melville, N.Y.

May 16--On a chilly Tuesday night in late March, reason enough not to brave the cold, officials at the Suffolk Y Jewish Community Center in Commack were stunned when their auditorium overflowed with 700 people.

They had expected the lecture to attract only 70.

The topic: Crohn's disease, an issue with special resonance on Long Island, where conservative estimates put the number of people afflicted with the inflammatory gastrointestinal condition at 30,000.

The star: a stocky, bespectacled Australian, Dr. Thomas Borody, a physician in the vanguard of a handful of theorists who believe Crohn's is caused by a specific species of nasty intestinal bacteria. He is attracting patients globally, many of whom have surfed the Internet, hoping for a miracle. He believes bacterial culprits underlie Crohn's disease, contracted largely, though not exclusively, through dairy foods and beef. "What we're saying," Borody told his audience, "is that Crohn's is caused by an infection."

Crohn's can wax and wane - it can cause a lifetime of trouble or remain relatively mild. In its worst form it can have social and economic impact. People diagnosed with it make at least a dozen trips daily to the bathroom, wracked by painful diarrhea. Some are so debilitated despite treatment, they are unable to work or regularly attend school.

Many experts have taken a dim view of Borody's germ theory. Conventional wisdom holds that Crohn's is caused by a hyperactive immune system - a body at war with itself.

Specialists such as Dr. Ramona Rajapakse, an assistant professor at Stony Brook University Hospital and an expert in inflammatory bowel disorders, said studies in this country based on the germ theory have proved fruitless. Borody has data on more than 200 patients, and a video of testimonials from Australians with Crohn's who say they've flourished under his care. Rajapakse dismisses testimonials. "In this country we rely on data from randomized, placebo-controlled clinical trials," she said. But Borody counts among his patients physicians who themselves have been diagnosed with Crohn's or whose children have the disorder. They say he has shed new light on an incurable, and sometimes fatal disease.

"It feels like cholera," said Dr. Judith E. Lipton, a Seattle-area psychiatrist and Crohn's patient.

Germ theory unproven

As one who takes Borody's recommended antibiotic treatment, Lipton said her life has been reinfused with vigor. She has tried to have a scientific paper published about Borody's germ theory. Top medical journals have rejected it.

Despite conventional wisdom, no one really knows what causes Crohn's, named in 1932 after Dr. Burrill Crohn of The Mount Sinai Hospital in Manhattan. Several provocative notions about the disorder's cause have been advanced, according to scientists at the National Institutes of Health. None has been proven.

The disease is marked by inflammation that can occur anywhere from the mouth to the anus and is characterized by bloody diarrhea, severe cramping and intestinal blockages - fistulas - that require doctors to surgically remove portions of the intestines. About 500,000 people nationwide have the disease, which is especially prevalent among people of Jewish descent. A gene - Nod2 - was discovered in 2001, and when mutated predisposes people to Crohn's.

Borody is not a fan of the genetic studies.

"The ... incidence of Crohn's disease far outstrips genetic mutations as a real contributory mechanism," he said. "So another environmental mechanism must be operating."

Conventional treatments center on anti-inflammatory drugs, steroids and a newer therapy, Remicade, a potent rheumatoid arthritis drug that tamps down aggressive immune activity.

To some experts, Crohn's is shrouded in mystery. There's no evidence of its existence prior to the 20th century.

Dr. Joshua Korzenik, director of the Crohn's and Colitis Center at Massachusetts General Hospital, said Crohn's parallels a sharp rise in sugar consumption in western countries. Prevalence of sugary foods, he said, encouraged a change in the type of bacteria inhabiting the gut, which some people's immune system could not effectively fight. This, he said, set the stage for a new disease.

"Historically, it has been a disease of industrialized countries. Now that's changing," said Korzenik, who points to a rising number of Crohn's cases in less developed regions of the world.

Despite his recognition that aggressive bacterial species may play a role, Korzenik is among those physicians who do not believe in Borody's theory.

Nor does the Crohn's and Colitis Foundation of America, which is headquartered in Manhattan, and funds studies aimed at better understanding and treating the disorder.

Edda Ramsdell, executive director of the foundation's Long Island division in Garden City, said the organization strongly encourages patients to follow their physician's instructions.

Still, she acknowledges the lecture was well received. "It definitely struck a chord," said Ramsdell, who is well acquainted with the disease professionally and personally.

Her mother had Crohn's; her maternal grandfather died of it. Ramsdell said many in the audience hoped to hear about a breakthrough. "I think people grasp at whatever they can, looking for a cure."

Joan Gruenwald, 52, of Queens, was in the audience. She said that before her disease went into remission in 2001 her diet consisted of a few daily teaspoons of baby food. Now her son, who in his 20s, has been diagnosed. "I'm hoping [Borody] has found the silver bullet," Gruenwald said.

Borody's notion, though not entirely original, suggests the disease is caused by Mycobacterium avium paratuberculosis - MAP - a close cousin of bacteria that cause tuberculosis and leprosy. MAP was first theorized to cause human intestinal disease in 1913, Borody said.

A bacterial theory

MAP, he added, is ubiquitous, occurring in a variety of sources - water, soil - but mostly in dairy and beef herds. He said a disease in cattle known as Johne's (pronounced YOH-neez) is nearly identical to the intestinal damage seen in Crohn's. Borody said MAP is a problem not just in Australian cattle, but in herds worldwide.

The U.S. Department of Agriculture's scientific division confirmed the bacteria are in some but not all U.S. herds, but government officials emphasize the microbe is not a human health threat.

"It is present in herds in the United States, there's no doubt about that," said Sandy Miller Hays, of the USDA's Agricultural Research Service. "But as long as the dairy products you're eating have been pasteurized, you don't have to worry," Hays said. "If you are drinking pasteurized milk, or eating pasteurized cheese, heat does kill Mycobacterium paratuberculosis."

Thoroughly cooking meats at a temperature of 160 degrees Fahrenheit, she added, a temperature that turns hamburger dark brown, also kills MAP and other bacteria.

Days before Borody spoke on Long Island, he attended an international meeting of gastroenterologists and scientists in St. Petersburg, Fla.

Dr. John Thompson, director of pediatric gastroenterology at the University of Miami, said MAP theorists - Borody included - did little to advance their case.

"The mycobacteria theory has been around for decades, and to date, really has not borne out any convincing evidence," Thompson said.

He contends the most compelling argument against MAP as a cause of Crohn's stems from the fact that Remicade cannot be prescribed to people who harbor TB bacteria. Because Remicade tamps down the immune system, TB would flare and worsen. MAP and the TB pathogen are in the same bacterial family. FDA officials never would have approved Remicade, Thompson said, knowing it would worsen Crohn's disease.

"It would be very hard to believe that [Remicade] would activate one form of mycobacteria and not activate [MAP] in patients who are taking it for Crohn's disease," Thompson said.

Patients' experiences with Borody's recommended therapy, however, suggest he may be on to something.

Kelly Alpert Vest, director of community relations at the Suffolk Y, said she recently tested positive for MAP. Vest, 37, has had Crohn's since she was 17.

Vest sought care in Texas last year from the only physician in the United States who would put her on Borody's triple-drug regimen - rifabutin, clarythromycin and clofazamine.

She said the medications have restored her health and renewed her strength. "I feel great," Vest said, noting that she took a chance on unconventional therapy after standard medications failed. She also vividly remembers her father battled Crohn's. He died of the disease at 46.

"I have a 6-year-old son, and I want to be here for him," Vest said.

Lipton, the psychiatrist trying to publish a scientific paper about Borody's work, said conventional therapy made her sicker.

"I was first hospitalized in March of 2004. I thought I was dying. I had severe abdominal pains and a fever. In my secret heart of hearts I thought I had leukemia," said Lipton, medical director of a cancer support program at Providence Hospital in Seattle.

"There are three of us in the United States [who have been trying to report about Borody's therapy]," Lipton said. "We have had trouble getting our article published." The other authors are Seattle pathologists, Drs. Todd Kuenstner and James Biesecker. Both have children with the disease who are now on antibiotics.

Lipton said her own improvement is testimony to the effectiveness of the therapy. "Pharmaceutical companies are selling fancier and fancier immune suppressant drugs, like the one I was taking, which costs $5,000 a shot, and you have to get it every eight weeks - forever."

Borody is a hero in Australia, where he was awarded the Barry Marshall Prize.

Marshall won the 2005 Nobel Prize in medicine for discovering that stomach ulcers are caused by bacteria, something that also was dismissed in the 1980s. Marshall proved his theory after drinking a vial of Helicobacter pylori, developing ulcers, then curing himself with antibiotics.

"It takes time for things to work themselves out," Borody said. "It took a while for things to work out for Barry Marshall."

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