CJD Cluster Deaths -
Something Is Very Wrong

From Patricia Doyle, PhD

Hello, Jeff - We keep hearing how rare CJD is. However, we also keep hearing about it in relation to eating infected meat and it does appear that it is not as rare as the CDC would like us to believe.
Another interesting point is the fact that many CJD cases, whether it is 'classic', 'sporadic', 'new variant' etc. appears to be found in CLUSTERS.
Something is terribly amiss and the government, in fact, governments around the world, do not want us to know about it. It's well past time to shed light on this 'RARE'(?) disease and its cause.
Patricia Doyle
County Deaths Raise Mad Cow Queries
Relatives Suspect Link Between Infected
Beef And kindred Human Disease
By Randi Rossmann
The Press Democrat
Four years after her husband died of a rare ailment resembling mad cow disease, Evalyn Mutin still wonders if he got it from eating beef.
At least four Sonoma County residents, including Jack Mutin, have died from Creutzfeldt-Jakob disease since 1990.
The brain-wasting disease is always fatal and experts don't know its cause, leaving people like Evalyn Mutin to struggle with unanswered questions.
Unlike its cousin, variant Creutzfeldt-Jakob, which is caused by eating meat from animals infected with bovine spongiform encephalopathy, or mad cow disease, most researchers say classic Creutzfeldt-Jakob can't be contracted from eating beef.
But some say more research is needed to determine if there is a link and whether the human variant of mad cow disease is more common than once believed.
"They look a lot alike. They have almost the same name and symptoms are similar," acknowledged Dr. Leigh Hall of the Sonoma County Public Health Department.
But they are distinctly different under the microscope. Victims also differ as the classic strain typically strikes people in their 60s, while most victims of the variant strain have been in their 20s.
Mutin, a retired mechanic and Larkfield volunteer firefighter, was 72. His wife said he loved beef and had visited Canada, where mad cow was first found in a cow imported from Great Britain in the 1990s.
Another infected cow was found in the spring in Alberta, and the cow discovered in Washington in December had been imported from Canada.
"There's the beef again," Evalyn Mutin said.
But her husband's death was ruled a case of classic CJD. So were the deaths of three other county residents: LaVerne Solkov, 62, of Santa Rosa in 1990; Bob Shaw, 61, of Penngrove in 1993; and Rae Lee Thompson, 62, of Santa Rosa in 1998.
To one degree or another, all four families suspect their loved ones had variant CJD or that beef played a role in their deaths.
Solkov's husband said she must have gotten it during a trip to England. Thompson's obituary said she traveled to Britain, and family members said they believed that must be where she was infected.
In Penngrove, Jan Shaw spent years educating herself about the disease after her husband's death. "I've pursued this so much," she said. "But I have no conclusion. They just don't know."
Dr. Norick Janian, a Santa Rosa neurologist, has handled several cases and doesn't think any of his patients have gotten classic CJD from eating beef.
But, he said, "Who knows?"
At Kaiser Permanente Medical Center in Santa Rosa, neurologist Allan Bernstein said there isn't enough information to definitively rule out beef as a cause.
"We don't know enough," he said. "I'm not so sure you can make that absolute statement."
There are no known cases of the variety of CJD caused by mad cow in Sonoma County, and there's been only one in the nation -- a Florida woman who had lived in Great Britain, doctors said.
About 150 people worldwide are known to have died from the disease since 1996, most of them having had connections to Great Britain, where the first major outbreak was identified.
Classic CJD was identified about 80 years ago. It infects 250 to 300 people nationwide annually, about one in a million.
In California, there were 293 cases from 1990 to 2000. On average, there is less than than one annually in Sonoma County.
The federal Centers for Disease Control and Prevention in Atlanta sponsors programs, including one in California, to increase surveillance of the disease. Goals include encouraging more autopsies of victims in an effort to learn more and make sure no variant CJD cases are missed.
Only a brain autopsy can distinguish between the two types of CJD. And in California, only about 22 percent of known CJD victims are autopsied.
The Sonoma County coroner has a policy against conducting such autopsies because of the possibility that a medical examiner will become infected. Bernstein said he understands the coroner's concern, noting surgeons have gotten the disease from working on infected brains.
The first signs of CJD are often small.
Jack Mutin had trouble with his memory; so did Bob Shaw.
Subsequent symptoms include loss of balance and difficulty walking. Toward the end, patients are unable to talk or swallow and usually are in a coma by the time they die.
"It's one of the nastiest (diseases) you can get," Janian said. "Some just disappear within a few weeks. Mostly it takes months or a year."
When Shaw became sick, doctors couldn't diagnose what was wrong. One even suggested his symptoms were in his head.
Ironically, they were, Jan Shaw said. His brain was being riddled with holes.
Shaw had led an active life. He and his wife had three daughters. They ran a flooring shop in Penngrove. Both were avid bike riders and he was a volunteer firefighter for 24 years.
In March 1993, he began having trouble with numbers. He couldn't write his ZIP code. He couldn't add.
"We didn't have a clue. He saw so many doctors," she said.
First, doctors thought he'd had a stroke. Then they suggested Parkinson's disease or a brain tumor. Finally, a psychiatrist sent him to a neurologist, and further tests resulted in the deadly diagnosis.
"We were sent home. I was told to be careful because they don't know how it's transmitted," she said. "It's bad stuff."
He died in June. It had been about four months.
A year later, she noticed a ram in their small herd of sheep staggering. She'd seen the same stagger in her husband and feared the ram might have scrapie, the ovine version of mad cow. An analysis at UC Davis indicated a 50 percent chance the ram had the disease, she said.
Shaw said it added to her suspicions about mad cow's role in her husband's death, but "it's a total mystery."
You can reach Staff Writer Randi Rossmann at 521-5412 or
Patricia A. Doyle, PhD
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