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Is there a connection between rare brain diseases and eating certain foods? Or is CJD genetic?


June 24, 3:14 PM

Who's investigating Creutzfeldt-Jakob (CJD) disease's possible causes? Classic CJD isn't related to mad cow disease, according to the Centers for Disease Control, although both classic CJD and variant CJD are prion diseases. But variant CJD is related to mad cow disease, also known as bovine spongiform encephalopathy or BSE. Also see the Variant Creutzfeldt-Jakob Disease (vCJD) site. The median age of death for persons with classic CJD is 68 years. But the median age of death for individuals with variant CJD is only 28 years. The Centers for Disease Control reports that infection with CJD disease usually leads to death within a year of the onset.

Can you 'catch' CJD from a skin graft, organ transplant, tooth implant, or other matter from a cadaver (recently deceased donor)? See the update regarding grafts. Update: Creutzfeldt-Jakob disease associated with cadaveric dura mater grafts--Japan, 1979-2003. No one knows for sure, of course. But the question remains: Why are so many talented, educated, and successful people dying from CJD even though CJD can cut across all levels of societies and can strike anyone? How come this rare brain disease isn't that rare anymore? What do scientists think the causes might be?

In Ashland, Oregon, on Monday evening, nearly 24 hours after a two-day benefit concert raised more than $25,000 for his medical bills and the support of his family, well-known Rogue Valley musical director and chorale leader, Dave Marston, 56, died in home hospice care from Creutzfeldt-Jakob, a rare brain disease, according to the Mail Tribune.

Are cases of Creutzfeldt-Jakob increasing? Scientists would like it to be mandatory that all human and animal transmissible spongiform encephalopathy diseases, of all phenotypes, of all ages, in every state and internationally to be reported.

See the blog on Monitoring the Occurrance of Emerging Forms of CJD (Creutzfeldt-Jakob) Disease. Also see the research study, Neurology 2003;60:176-181 © 2003 American Academy of Neurology. The big issue to research is whether a person coming down in middle age or younger with a rare brain disease similar to mad cow disease called Creutzfeldt-Jakob disease (which always is fatal) has been caused by eating animal protein in the past or recently.

If dying in middle age, in your sixties, or before you're 28 of CJD is affecting the most brilliant people such as scientists, teachers, computer leaders, and economists, what's causing it? Who might be in denial? Is your professional relevant or not related to you getting CJD at any given age? And why is CJD called a one-in-a-million rare brain disease if so many prominent people in the news are dying of it? What's going on? Anybody know?

At least scientists are studying and reporting whether the disease is on the rise. These rare brain diseases caused by what scientists think are prions are on the rise. See the blog on the Meeting of TheTransmissible Spongiform Encephalopathies Committee On June 12, 2009.

Scientists are going to agree and disagree on many points, but the research is ongoing, and that's good for consumers to know, that somebody is looking into the matter. You can read the reports on limited bovine spongiform encephalopathy (BSE) testing for mad cow disease in the High Plains/Midwest Agricultural Journal.

Ever since and long before the popular and excellent novel (a work of fiction) Brain Trust has been published, readers wanted to know whether it's based on real research or not. The book by Colm A. Kelleher Ph.D. has a subtitle: "The Hidden Connection between Misdiagnosed Alzheimer's and Mad Cow Disease." Are medical thrillers like some historical thrillers based on even a hint of truth or are they entirely fiction? A lot of readers think the medical thriller is more than fiction based on imagination. What do you think?

According to the review site, it's the "best medical thriller in years," and according to the Medical Post, April 2006, the novel is a medical detective story that traces the origin and spread of the deadly infectious prions that cause Mad Cow disease as they jumped species and ended up in America’s food supply.

The review site notes, "It also shows how human Mad Cow disease is hidden in the current epidemic of Alzheimer’s Disease. By exposing the devastating truth about Mad Cow Disease, including revealing a second prion epidemic in the nation’s deer, elk and other wildlife, Brain Trust inoculates Americans with an effective cure: The Truth."

If you want to read strictly nonfiction books on how food could be linked to brain diseases, see the book, Dying for a Hamburger: Modern Meat Processing and the Epidemic of Alzheimer's Disease, by Murray Waldman, M.D. and Marjorie Lamb.

Scientists know so far that there are two prion diseases. There are old and newer articles all over the online news sites asking whether mad cow disease is making its way into our meat.

Then there's the other prion disease, CJD. Where did that prion come from and how does it infect people? See the links at the bottom of this article on CJD, a fatal disease of humans that has similar symptoms to mad cow disease and always is fatal. For example, read the Twin Falls Idaho, Times-News article by Sandy Miller, Fifth Woman Dies After Being Diagnosed with CJD. How did the cluster originate?

The article reports, "CJD is carried by prions, an abnormal form of protein in the bloodstream. Prions cause folding of normal protein in the brain, leading to brain damage. Symptoms include dementia and other neurological signs. Its victims typically die within four or five months after onset of the disease, according to the Centers for Disease Control and Prevention."

Did the women catch the disease from eating a meat-based diet? The article notes, "Health officials believe that all of the women had sporadic CJD and not the variant form of CJD that people get when they eat meat from a cow with bovine spongiform encephalopathy -- commonly known as mad cow disease."

According to the article, "All of the women were between the ages of 60 and 83. The average age of people who've died from sporadic CJD is 68. The average age of people who've died from the variant form of CJD is 28, according to the CDC."

So now the question is what causes the sporadic form of CJD? Scientists know one type of prion is the cause of CJD and another type of prion is the cause of mad cow disease (BSE). Where did either of those two prions originate? So far, nobody knows, and testing continues.

The problem is that this is not fiction from a novel. The article reports that, "However, the unusually high number of cases has drawn attention from state health officials as well as the CDC. Normally, the disease infects just one person per 1 million people worldwide a year. In Idaho, there are about three cases of CJD annually, and in recent years the United States has reported fewer than 300 cases of CJD a year, according to the CDC."

In Idaho, people are eating a lot of meat. Could meat be the culprit? And the testing and research continues.

A similar Times-News article, "Health officials investigate unusual cluster of CJD cases: Mad cow disease not suspected by Times-News writer, Sandy Miller, reporting on the same case of five women dying from CJD notes, "Laboratory results are pending on two of the women."

What do you think caused the cluster of CJD? Read Terry Singeltary's blog. His mother died from a rare phenotype of CJD, for example, the Heidenhain Variant of Creutzfeldt Jakob Disease. It's described as sporadic, simply meaning from an unknown route and source. Singeltery notes on his blog, "I have simply been trying to validate her death DOD 12/14/97 with the truth. There is a route, and there is a source."

Here's a statement to ponder, suggested by Terry Singletary, "Even if fish could not contract a Transmissible Spongiform Encephalopathy, it would still be possible for the TSE agent to survive the digestinal tract, and then if that fish was added as an ingredient for feed, the agent could further spread to infect other species."

Also see one of Terry Singletary's blog articles, Alzheimer's Disease is Transmissible. According to an article in the UK Guardian (June 7, 2009) noted on the blog, reference to that article, "Mice injected with Alzheimer's cast new light on dementia," revealed that, "Scientists have found that harmful tangles of proteins that cause diseases such as Alzheimer's can be transmitted from one brain to another, spreading and causing damage after being injected into the brains of mice. The researchers emphasized, however, that Alzheimer's was not contagious and said it could not be caught, for example, through blood transfusions."

Everyone wants to know whether eating lots of meat or farmed fish is or is not going to give them a rare brain disease. Scientists know a sporadic form of CJD comes from a different source than the usual mad cow disease that hits younger people, but they don't know what the origin of the disease is or where it's found.

What do veterinarians concerned about cancer in animals say? One veterinarian emailed me a letter that noted in part, "As a concerned veterinarian there is a topic that is not part of the zoonotic diseases that is talked about, and it needs to be--BLV, Bovine Leukemia Virus."

You might look at the Emily Project. The site notes, "While bovine leukemia virus is not the main cause nor the only cause of cancer, we can not ignore that BLV has been discovered in some female breast tissues."

The veterinarian wrote, "From this concern about cancer in animals, the Dr.DoMore documentary arose and evolved into the first Integrative Health Pet Expo. All of these efforts are to raise awareness and funds to have healthy sustainable green medicine that looks at all the healthiest option for ourselves and our animals. There needs to be conscious effort to bring information and make the changes to save our planet, ourselves and our animals."

As for CJD, check out the Justice for Andy site, it reports, "On 16th December 2007 at just 24 years of age, my son Andy Black died after suffering from the human form of mad cows disease vCJD (variant Creutzfeldt-Jakob Disease). Andy worked in the media producing/researching programmes for talkSPORT Radio, BBC, and ITV. During his terrible last days and at his request I made it my mission to find out “Who killed my son?” and with the BBC, I have produced a documentary exposing the key players at the centre of the BSE crisis whose actions and decisions led to his untimely and avoidable death."

The CJD Foundation according to their site, "contains information compiled with the needs of CJD patients and their families in mind. The CJD Foundation consists of members who want to support you through this experience." Also see History of CJD Foundation - Two Women Against Mad Cow Disease. If you're researching this topic, check out the CJDVoice yahoo group, which members are all family members of victims to CJD. Their stories are harrowing.

What can consumers do when in the US too few cattle are tested for BSE? If you don't test; you won't find. What do you think readers, should it be mandatory in the US for industry to test 100% of cattle for BSE? And who'll pay for it? Check out the BSE Information site and read the article, "Prevention and Control."

People whose parent(s) or children have come down with rare brain diseases when family history shows that family members for generations back never had a history of these type of diseases are curious. They wonder whether or not the fact that prion diseases lay dorment for so many years is why industry gets away with never admitting there is little to no connection of something in industry to human illness. The family members think that industry will never admit it.

According to the Centers for Disease Control, the most common form of classic CJD is believed to be "sporadic and caused by the spontaneous transformation of normal prion proteins into abnormal prions." The CDC reports that about 85 percent of CJD cases are sporadic. According to the Centers for Disease Control, Classic CJD is a human prion disease. It is a neurodegenerative disorder with characteristic clinical and diagnostic features. This disease is rapidly progressive and always fatal. Infection with this disease leads to death usually within one year of onset of illness.

The Centers for Disease Control also makes an important note: Classic CJD is not related to "mad cow" disease. Classic CJD also is distinct from "variant CJD", another prion disease that is related to BSE. Mad cow disease is known as bovine spongiform encephalopathy or BSE.

The Centers for Disease Control site also states, "It also could be inherited in a smaller number of patients, around five to 15 percent. In the inherited variety of CDJ, people develop the disease due to inherited mutations of the prion protein gene."

Also watch the video at the Justice for Andy site about vCJD, which is the variant of CJD linked mad cow's disease in the UK. How do you explain to a parent when a young child dies from a rare brain disease caused by a prion, that's smaller than a virus?

Where did it come from? And so the research continues. For further information, here are some helpful sites on people felled by CDJ, the rare brain disease. A reader emailed this list to me. It's a list of obituaries of people that died of or have been diagnosed with CJD. Some are famous or otherwise prominent in their communities.

Pensioner killed by brain disease – June 18, 2009

Roane County Tennessee Woman Diagnosed with CJD

Mad Cow Disease Unlikely in CDJ death (same Roane County, Tennesse person)

Human Resources Manager dies of CDJ

18-year Old Diagnosed with variant CDJ

Michigan Artist succumbs to CDJ

Young Man Dies of CJD Researchers think an error or mistake of cellular biology or protein chemistry may cause the first prion to pop up. Even one molecule will replicate.

Nurse, 54 dies of CJD

Silicon Valley Executive, 50, dies of CJD

Council Leader, 56 dies of CJD

Gas Industry Industrialist, 64, dies of CJD

Mad Cow Cases in Texas and Alabama Appear to be Rare, Mysterious Strain

WI - Robert D. Wendorf 54 died June 5, 2009

NY – Eric Bjorklund 40 (Fundraiser)

WI – Susan Feld 66, June 7, 2009

Canada – Anne Marie Merle June 3, 2009

James R Hall 64 – Albany, NY 5-30-09

Concert will benefit ailing Ashland music leader – 5-27-09

Former Commissioner McCarter dead at 71 5-26-09

Deaths from rare brain diseases

Postcrescent

Arizona Central

Daily Progress

CNet News-Silicon Valley Fixture Dies of CJD at 50 (steered creation of Netscape before acquisition by AOL)

Roger C Cormendi, research economist, Dies of CJD at 59

Teacher dies of CJD

Home chef, 56, dies of CJD

Arizona Attorney, 63, dies of CJD



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