Off Topic from Autism - Cure for Crohn's Disease & UC

[Guest guest]

The leading people who are working on the cure for Crohn's disease are in

Florida, Australia,and England. They are getting there work published in the

medical journals.

Duclayan wrote:

Two months after the fact, this story on Dr. Borody's lecture on Long Island

appeared in today's New York Newsday.

Besides Dr. Borody's work, in which I'm always interested, I was intrigued

by the information from Dr. Korzenik, who is the director of the Crohn's

and Colitis Center at Massachusetts General Hospital. He said that 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.

Wow! I wonder what this guy's feelings are about the SCD, since that statement

seems to fit right in with the SCD theory.

-- (husband CD 2/2006; SCD 2/2006)

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Bucking the mainstream on Crohn's

Gastrointestinal doctors claiming a bacterial cause are grabbing patients'

attention

BY DELTHIA RICKS Newsday Staff Writer May 16, 2006

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. 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. 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

e'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 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. sburg, Fla.

Dr. , 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, " 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, 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, " said.

Patients' experiences with Borody's recommended therapy, however, suggest he

may be on to something.

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

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. "

Copyright 2006 Newsday Inc.

_______________________________________________

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Hi all

I sent Proffesor Herman an e-mail earlier today inquiring about

the progress made with the possible vaccine for CD. To my absolute amazement

he called me from London (to Botswana) 15 minutes later.

In our short conversation he promised to forward all the details of his

research to me. He is ABSOLUTELY adamant that Crohn's is a result of MAP

bacteria infection from milk.

I will post any information on the progress of his research to the group as

soon as I get it.

IMAGINE if a simple vaccine is our cure!!

Craig Brown Gaborone Botswana

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[sCDiet] UC Diseae List Digest, Vol 14, Issue 22

Date: Wed, 17 May 2006 11:41:39 -0400

I have taken the article posted back in March regarding Dr. Borody's

findings to my gastro. I told him point blank that diet modifications,

prednisone or anti-inflammatories are not helping and I need something else.

He actually read the article with interest and broke down and wrote me the

prescriptions for the antibiotic cocktail. Well, everyone, it has been 5

days since I started and I must say I went from 20+ times a day down to 5!!!

The only side effect is the Levoquin (not sure if that is spelled

correctly) makes you a little loopy. I am somewhat sticking to the diet but

broke down and had a small piece of bread yesterday. I feel great and I am

sure this illness is definitely an infection not auto-immune.

I encourage all of you out there to take that article to your gastro. and

beg, plead or whatever you need to do to get the prescriptions. 5 days made

a phenomenal difference in my life.

Carol Lynn Beninca UC 12+yearsAntibiotic cocktail

________________________________________

Loving Care,Grammy Gay IBS-1930, IBD-1984, SURGERY-1988, CD-1994,

SCD-1997, REMISSION-1998, NO-MEDS.

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