Well i got this from Ls1.com-

"The following is VERY long, but I implore you to take this seriously, and help us, along with millions of other Crohn's sufferers. I trust that you would want the very best for your fellow LS1.com members. The orginal post is here: Original Post I Made
If you have any questions, please e-mail either myself or Mike. His e-mail address is mparent@javanet.com .


quote:
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Hello Everyone,
Below is all the necessary information to contact the appropriate people. I hope I've made this convenient enough for you. If you have any trouble then let me know. The actual letter you will want to send is appended below. You will send this very same letter to your Rep, and both Senators. I appreciate you taking this serious, and helping me.

Sincerely,
Michael (MetallicBlue)

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Sending Letters to Your Elected Representatives
Thank you for your commitment to participate in this project. We present here some materials to assist you in writing to your elected representatives, including sample letters, which are highlighted below.

Please keep in mind that it would be more effective if you personalize your letter, adding a paragraph or two of how Crohn's disease has affected you. Please be sure to include your name and address on all letters. We must emphasize, however, that you use the language contained in the sample letter we have provided for you, linked below.

You can send this letter requesting support for PARA's research proposals to the following

A letter to your own Congressman. All U.S. citizens have a Congressman in the House of Representatives. You can look up the name and address of your Congressman/Representative on the Write Your Representative website.

A letter to each of your own two Senators. All U.S. citizens are represented in the Senate by two senators. You can look up the names and addresses of your Senators on the U.S. Senate: Senators by State website.

A letter to Congressman Porter, the Chairman of the House Appropriations Subcommittee responsible for deciding this issue. Congressman Porter's contact details are:
The Honorable John Edward Porter,
U.S. House of Representatives,
2373 Rayburn HOB,
Washington DC 20515-1310.

A letter to Senator Specter, the Chairman of the Senate Appropriations Subcommittee responsible for deciding this issue. Senator Specter's contact details are:
The Honorable Arlen Specter,
United States Senate,
711 Hart Senate Office Building,
Washington, DC 20510.

A letter to the ranking members of those committees

The Honorable Tom Harkin
United States Senate
731 Hart Senate Office Building
Washington, DC 20510

The Honorable C.W. Bill Young
U.S. House of Representatives
2407 Rayburn HOB
Washington, DC 20515-0910

The Honorable David R. Obey
U.S. House of Representatives
2314 Rayburn HOB
Washington, DC 20515-4907


Note - If you happen to be a constituent of either Senator Specter or Congressman Porter or any of the 15 members of the House Appropriations Committee or any of the 15 members of the Senate Appropriations Committee, then it is vitally important that you make every effort to bring this matter to his/her attention and that you solicit help from friends/family to do the same.

If you wish to conduct a letter writing campaign in your area, please email PARA at congress@crohns.org for further details.


Attachment 1: Letter Request for Earmarked Funding Allocation for Research Targeted at Infectious Cause of Crohn's Disease," submitted 6 February 2000 by PARA

Date

Dear [Senator ________ or Representative __________]:

I am writing to you as a concerned citizen to ask for your active support of proposal entitled "Request for Earmarked Funding Allocation for Research Targeted at Infectious Cause of Crohn's Disease," submitted 6 February 2000 by PARA (Paratuberculosis Awareness & Research Association) to the Subcommittees listed below:

House of Representatives Appropriations Subcommittee - Labor, Health & Human
Services & Education
Senate Appropriations Subcommittee - Labor, HHS, Education & Related Agencies

The specific "PARA position/language" that ask I you to support and that I request be added to the FY2001 Appropriations Bill is set forth in Attachment 1 to this letter.

Your urgent assistance is of critical importance, since PARA's submission involves a matter potentially critical to the public health. More specifically, recent research has provided increasingly compelling evidence that a bacterium known as Mycobacterium avium, subspecies paratuberculosis or Map -- which causes a fatal intestinal disease in cattle that is clinically and pathologically similar to Crohn's disease in humans - may be a cause of Crohn's disease!

The NIH/NIAID and CDC have recently taken significant actions to publish entirely new Research Agenda's to address an infectious cause of Crohn's, with Map as the primary target of research. Furthermore, the National Cattlemen's Beef Association (NCBA) has now stepped to the plate as well by providing formal support for PARA's Submission.

To ensure the protection of the public health, the scientific evidence suggesting an infectious cause of Crohn's demands a verdict - and in the shortest period of time possible! Specifically targeted research is all that can conclusively provide this verdict. Moreover, a cure for Crohn's Disease will save a minimum of $3.2 billion annually in Crohn's patient's medical costs. Most importantly, however, the human suffering that will be saved is incalculable. Please help bring an end to the enormous suffering of millions worldwide!

Thank you for your attention, and I look forward to hearing from you about this matter, in anticipation that you will actively support this research-funding request.

Sincerely,

Name_________________________________

Address _______________________________


Attachment 1

Submission - PARA Requested Appropriations Bill FY 2001 Language - NIAID Language

First Preference: The Committee notes with deep interest and concern, the NIAID's new published Research Recommendations for Crohn's Disease entitled, "Crohn's Disease - Is there a Microbial Etiology? Recommendations for a Research Agenda." The Committee shares the grave concerns of the NIAID that Crohn's Disease may have an infectious etiology. Moreover, the Committee also shares the NIAID's concern that if it is proven that MAP, the primary target of the new research agenda, is the cause of Crohn's Disease, the impact upon the public health is enormous due to the prevalence of this mycobacteria on the farm and in the water. In light of these concerns, and in recognition that there are currently little or no funds/studies to target an infectious cause for Crohn's disease and, having further determined that advancement of this research is immediately urgent and critical to ensure the protection of the public health, we specifically earmark $300 million in new and existing funds to be allocated directly to NIAID to determine an infectious cause of Crohn's Disease. We further very strongly urge that this research be considered of the highest priority for immediate undertaking and completion. The Committee respectfully requests status reports on the implementation and progress of this research by 31 January 2001 and again by 31 July 2001.

Second Preference: The Committee notes with deep interest and concern, the NIAID's new published Research Recommendations for Crohn's Disease entitled, "Crohn's Disease - Is there a Microbial Etiology? Recommendations for a Research Agenda." The Committee shares the grave concerns of the NIAID that Crohn's Disease may have an infectious etiology. Moreover, the Committee also shares the NIAID's concern that if it is proven that MAP, the primary target of the new research agenda, is the cause of Crohn's Disease, the impact upon the public health is enormous due to the prevalence of this mycobacteria on the farm and in the water. In light of these concerns, and in recognition that there is no current full program to target an infectious cause for Crohn's disease and, having further determined that advancement of this research is immediately urgent and critical to ensure the protection of the public health, we strongly encourage significant NIAID efforts to determine an infectious cause of Crohn's Disease. We further strongly urge that this research be considered of the highest priority for immediate undertaking and completion. The Committee respectfully requests status reports on the implementation and progress of this research by 31 January 2001 and again by 31 July 2001.

Submission - PARA Requested Appropriations Bill FY 2001 Language - CDC Language

[/b]First Preference[/b]: The Committee notes with deep interest and concern, the CDC's new published "Summary and Working Document" setting forth its research recommendations to target an infectious cause for Crohn's Disease. The Committee shares the grave concerns of the CDC that Crohn's Disease may have an infectious etiology. Moreover, the Committee also shares the CDC's concern that if it is proven that MAP is the cause of Crohn's Disease, the impact upon the public health is enormous due to the prevalence of this mycobacteria on the farm and in the water. In light of these concerns, and in recognition that there are currently little or no funds/studies to target an infectious cause for Crohn's disease and, having further determined that advancement of this research is immediately urgent and critical to ensure the protection of the public health, we specifically earmark $200 million in new and existing funds to be allocated directly to CDC to determine an infectious cause of Crohn's Disease. We further very strongly urge that this research be considered of the highest priority for immediate undertaking and completion. The Committee respectfully requests status reports on the implementation and progress of this research by 31 January 2001 and again by 31 July 2001.


Second Preference: The Committee notes with deep interest and concern, the CDC's new published "Summary and Working Document" setting forth its research recommendations to target an infectious cause for Crohn's Disease. The Committee shares the grave concerns of the CDC that Crohn's Disease may have an infectious etiology. Moreover, the Committee also shares the CDC's concern that if it is proven that MAP is the cause of Crohn's Disease, the impact upon the public health is enormous due to the prevalence of this mycobacteria on the farm and in the water. In light of these concerns, and in recognition that there is no current full program to target an infectious cause for Crohn's disease and, having further determined that advancement of this research is immediately urgent and critical to ensure the protection of the public health, we strongly encourage significant CDC efforts to determine an infectious cause of Crohn's Disease. We further strongly urge that this research be considered of the highest priority for immediate undertaking and completion. The Committee respectfully requests status reports on the implementation and progress of this research by 31 January 2001 and again by 31 July 2001.

I know that this is VERY long. But I hope that out of all the members of LS1.com, at LEAST 20 or so of you will take the time out to do this. Thank you so much. The following is a letter Mike wanted me to post here sent to his brother in California. Thank you again for taking your time to read this. The text in bold are Mike's replies to his brother.


quote:
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Hello Fellow LS1 Member,
This is an e-mail between me, and my brother. It will help you understand where I am at right now.

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Hi Michael,

"How are things. I'm still recovering from the ride in your truck."-Mark

Hello Mark,
I'm glad you enjoyed the ride in the truck. I hope your rump is alright!. I haven't ridden in "Miss Piggy" since our little escapade. The fellas up at the strip where I race call her "Miss Piggy" cause she squeals, and whines like a pig when they hear the supercharger screaming down the track. I think the name fits her just fine.

"Things are o.k. here, just trying to figure a way to retire, ha ha."-Mark

I'm glad to hear things are doing ok with you. My attitude has changed dramatically although I'm still pretty scared of what the future may, or may not hold for me. I went to see the Dr., and If I remember correctly I told you all about it. I'm not sure, but I'll tell you again. I saw the Dr on Wednesday August 16th. Before attending my appointments I record any changes in attitude, physical well being etc. I went in to see him, and he basically acted like he had some place else he'd rather be. He constantly kept interrupting me. It got to the point where I asked him if he even wanted to hear how I was doing, and If I should continue speaking. The appointment did not go well, and It ended with him telling me that I should see a psychiatrist, because my "grieving" attitude, and depression are separate issues unrelated to being chronically ill. I told him he's wrong, and that I "will" find a cure, and I walked out. Since that day I have felt unbelievably great mentally. Being told "It's all in your head", and hearing it"again" just reinforced my will to find a solution.

I'm sure he "tried" to make me feel better after having said that, because then he said "you definitely have Crohn's Disease", which is common sense, but his condescending approach in saying it's "abnormal" to be depressed or to grieve over the loss of a life I might never have/want angered me. I realized I would have to take responsibility in finding a solution myself. The way I look at it is if everyone just "accepts" that there is no cure, then no one will bother looking, so I did just that.

I've spent everyday from August 16th until now, even now while writing you; doing research, calling Dr.'s, writing e-mails. I've contacted over 400 people around the world. Pathologists, Immunologists, Gasterenterologists, Microbiologists, etc. I have contacted research scientists & medical physicians. I've casted a wide net to include anyone who has an interest in finding a cure, and I've received numerous replies. I figure that in reaching out to 400 people I'm bound to get at least 20 replies back, and out of those 20 replies I'm bound to have one who is willing to assist me.

(Subject Change For a Moment)

This might even be a useful concept for you to try yourself at work, or on some other occasion. I've found it quite useful.
Alot of people spend all their time trying to be creative, and come up with one great idea to present to another person, only to be discouraged when it's shot down. Or worse the person will try hammering another with the same doomed idea/suggestion thinking persistence will pay off. That's a bad strategy. A better approach is to create more ideas/suggestions that are less attractive then "one" initially outstanding idea. Try twenty ideas. Ignore the rejections you receive. Eventually, by pure accident, you'll hit an idea that someone likes. You won't be remembered as the person who had 19 bad ideas, you'll be remembered as the person who had one good idea. Bad ideas that aren't implemented are quickly forgotten. See I'm not the brightest bulb, but Dad did teach me one good thing that's always worked, and that's what I did with my research. I figure since I'm creative I could use that as a strength in persuading individuals to try my cause instead of ignoring it. If your going to create, create a lot. Creativity is not like playing a slot machine, where failure to win means you go home broke. With creativity, if you don't win, you're usually not worse off then if you hadn't played at all. Creativity has very few downsides except one. Critics. My Dr obviously is one of them. I figure that right now I'm not worse off looking for a cure, then if I sat around moping.

I hope this e-mail is long enough for you. I can keep you busy for hours just reading it. I did in fact receive calls, and e-mail back regarding my research. In fact I received an e-mail back from a world renown research Microbiologist who specializes in a certain bacteria called Mycobacteria avium subspecies paratuberculosis. Dr. Rodrick Chiodini is the name of the Microbiologist who contacted me, and this is how him, and myself connected.

Dr. Rodrick Chiodini went on a treasure hunt. Like most people who embark on an improbable journey, the hunt took over his life, changing it irrevocably. Unlike most treasure hunters, he found what he was looking for.

While working on his Ph.D. in microbiology at the University of Connecticut, Chiodini developed an expertise on a bacterium, Mycobacterium paratuberculosis (Mp), that causes a debilitating intestinal disorder in cattle. The disease in cows, identified more than a century ago by Heinrich Johne, is characterized by diarrhea, excessive weight loss, reduced milk production and ultimately death.

Named after its identifier, Johne's disease (pronounced YO-neez) in cattle is similar to Crohn's disease in humans (pronounced kronz). This chronic inflammatory disease of the gastrointestinal tract also results in severe diarrhea, excessive weight loss and -- for humans, who live a lot longer than cows -- debilitating abdominal pain, rectal bleeding, bowel obstruction, fistulas and abscesses. Chronic Crohn's will likely lead to surgery for removal of inflamed intestine, as well as a lifetime of harsh drug therapy that often doesn't work.

The possibility of a connection between Johne's disease in cattle and a similar gastrointestinal condition in humans had been suggested as early as 1913, but for 70 years, every attempt to locate the bug in human Crohn's patients failed. Despite the negative results, the similarities between Johne's in cattle and Crohn's in humans proved too compelling to ignore.

So in 1981, Chiodini went looking for the elusive bacterium, successfully isolating Mp -- the cause of Johne's disease in cattle -- in the intestine of six people suffering from Crohn's disease. Chiodini's discovery -- seemingly the microbiologist's equivalent of unearthing a buried treasure -- turned out to be a Pandora's box. For the first time, Chiodini's research implicated contaminated milk as a possible cause of a debilitating, sometimes fatal, gastrointestinal disease.


The Crohn's connection

"The public should know that there are a number of medical researchers and veterinary researchers that are concerned about the implications of this organism," says Mike Collins, a doctor of veterinary medicine and microbiology at the University of Wisconsin. Collins has been leading a three-year international study on the possible connection between Mp and Crohn's disease, the results of which are not yet available.

"This organism basically resides in animal populations, mainly ruminants, and it causes a disease in those ruminants that looks very much like Crohn's disease [in humans]. But we don't know what, if any, the consequences are when this organism spills over to the human community. We don't know how that might happen, the frequency or the consequences. But we need to figure this out as quickly as possible. There's sufficient scientific evidence to cause concern."

This seemingly banal statement summarizes a raging, eye-crossing scientific debate among a core group of researchers that has yet to come to the public's attention. The debate over the possibility that a bacterium originating in cows might cause Crohn's disease in humans has fueled merciless professional attacks, closed-door meetings and a lot of behind-the-scenes hand-wringing.

What it has not fueled is well-funded research by either the government or the dairy industry. The little research that has been undertaken has been on shoestring budgets, yielding debatable results. Very few researchers have been able to culture the bug from Crohn's patients, grow it in the laboratory or detect an immunological response to it. Conflicting research has been reported from every corner of the globe. The only certainty in the whole matter is that it is a very controversial, unproven theory.

Critics of the theory then use the inconclusive results to argue against committing serious research dollars to investigating the seemingly well-reasoned hypothesis that a bacterium known to cause disease in cattle -- that is shed live in their milk -- can be transmitted to and cause a similar disease in humans.

But without well-funded research, there are no definitive answers to these vexing questions: Does Mp cause or contribute to Crohn's disease in humans? Does Mp survive the pasteurization process? Is it currently in the retail milk supply? Are our children at risk? And if the answer to any of these questions is even possibly yes, why isn't the American public aware that this is indeed a concern?

Estimates are that between 500,000 and 1 million people in the U.S. have Crohn's disease, and it is spreading rapidly. Approximately 55 Americans, mostly between the ages of 15 and 25, will be diagnosed with this incurable disease every day, and at least half of Crohn's patients will require surgery. All will suffer, mostly in silence due to the embarrassing nature of the symptoms, without any awareness that there may be a connection between their illness and the consumption of dairy products.

Researchers investigating the possibility that Mp causes Crohn's suggest that people may be infected with the organism at a young age, when milk consumption is high. Because it is a known to be a slow-growing organism that probably requires a trigger to cause symptoms -- such as the hormonal changes of adolescence -- people do not come down with the disease until later in life. Further, they believe that there is a genetic predisposition, as the disease has a tendency to run in families. They are quick to point out, however, that even the most infectious agents, such as tuberculosis, only causes disease in one out of approximately 300 people who are exposed to it. So exposure to the bacterium does not necessarily equate with contracting the disease. But despite all the mitigating circumstances, a handful of respected researchers around the world suspect Mp is the main culprit in causing Crohn's disease.

"Crohn's disease has a very spotty distribution in the world," notes Dr. Walter Thayer, an expert on the disease at Rhode Island Hospital who worked with Chiodini to culture Mp from Crohn's patients. "But it's seen only in milk-drinking areas -- Australia, southern Africa, Europe, the United States, Canada, New Zealand. Interestingly, it's not seen in India, where they do drink milk, but they boil it first.

"The other thing, Crohn's disease wasn't really known until the '20s. And there were only a few cases in the literature. Now it's a very common disease. What has happened to dairying in that time? Do you get milk from your local dairy? No. You get it from big conglomerates that buy from local dairies and pool all the milk. I think this is possibly the reason the disease has spread so quickly."

Just as Crohn's disease is increasing in the human population, Johne's disease is spreading among dairy cattle. According to a National Animal Health Monitoring System study conducted in 1996 for the United States Department of Agriculture (USDA), an estimated 22 percent of U.S. dairies are infected with the Johne's organism. Larger herds are more likely to be infected -- about 40 percent of the herds with more than 300 cows had at least a 10 percent infection rate.

According to the same study -- despite both its having been identified more than a hundred years ago and the increasing incidence of the disease in dairy herds, which is costing the industry an estimated $1.5 billion a year -- 45 percent of dairy producers are either unaware of Johne's disease or know little about it. This is perhaps due to the fact that between 1992 and 1996, less than 1 percent of the USDA's National Research Initiative Competitive Grants funding was allocated to Johne's research and/or education. Regardless of any human health consequences this organism may cause, clearly a problem has been allowed to fester.

"It's one of the most economically significant infectious diseases," says Collins about the prevalence of Johne's in the nation's dairy herds. "It has appeared among our dairy cattle and is spreading, and we don't yet have the means, or possibly the will, to stop it.

"Experts agree that [Mp]...is excreted directly into the milk of infected cows...and that it happens before the animal shows signs of [Johne's disease]," says Collins. "The question is whether Mp in raw milk is sufficiently heat-resistant to withstand pasteurization. Four studies indicate that Mp is capable of surviving pasteurization, and two studies say it is not. It was found in pasteurized retail milk in England in 1996," results that were reproduced by Dr. Irene Grant, a respected researcher from Ireland.


Dusting for fingerprints

Shortly after Chiodini reported his successful efforts to cultivate Mp from Crohn's patients, he sent some of these cultures to Dr. John Hermon-Taylor, chairman of the department of surgery at St. Georges Hospital Medical School in London. An internationally recognized expert on Crohn's disease, Hermon-Taylor used these cultures to identify a unique genetic sequence in Mp, known as IS900.

This genetic "fingerprint" was then used by Hermon-Taylor to investigate whether Crohn's patients are more likely to be infected with Mp than other populations. In 1991, Hermon-Taylor reported that 65 percent of Crohn's patients tested positive for the presence IS900 (and thus the presence of Mp), whereas only 4.3 percent of ulcerative colitis patients and 12.5 percent of people without Crohn's disease tested positive.

Hermon-Taylor also received a small amount of funding to test retail milk in Great Britain for the presence of IS900. Between 1990 and 1994, his laboratory reported that 7 percent of the pasteurized milk they tested was positive for the DNA fingerprint of Mp. After culturing the milk for up to three and a half years, Hermon-Taylor says, "16 percent of the retail milk samples that originally tested negative came up with long-term cultures which tested strongly positive." Significantly, the same pasteurization process used in Great Britain is used in the United States.

Due to Hermon-Taylor's work, the British government announced last August -- garnering headline news there but not a word in the American press -- that experts from the Ministry of Agriculture, Fisheries and Food will spend 18 months investigating at least 1,000 samples of all types of milk for the bacterium.

"I've known that this organism is a strong candidate for causing chronic inflammation of the intestine in humans for a long time," says Hermon-Taylor. "But in order to cross a Rubicon that has very substantial implications, I had to be certain and even more certain. I became absolutely certain about three years ago. It's not a question of whether Mp can act as a human pathogen or not. It's a question of does it cause 50 percent of Crohn's disease or 90 percent of Crohn's disease? And my hunch is -- based on the evidence available, and more is needed -- it causes 90 percent."

In addition to the strong correlation between the genetic fingerprint for Mp and people with Crohn's disease, Hermon-Taylor says that when he treats patients with antibiotics known to be effective against mycobacterial infections, between two-thirds and three-quarters of his patients report improvements, some remarkable.

"I've seen people who were without hope get better like magic," says Hermon-Taylor. "I've been a doctor for nearly 40 years, and it's the best thing I've ever seen in clinical medicine."

One such patient who improved dramatically on Hermon-Taylor's antibiotic regimen is Vanessa Buchanon, who, coincidentally, holds a Ph.D. in microbiology. Buchanon, 28, from London, had been diagnosed with Crohn's and was receiving conventional treatment for about a year.

"In December 1997, I was really ill, and it was getting worse. It was then that my mom gave me an article about Hermon-Taylor. ...I phoned up his secretary and [wondered] if I could get treatment. He actually came to the phone and chatted with me for about a half an hour about the research he'd been doing.

"So I started the treatment in April 1998. I was really sick. I'd lost about five kilos in weight [more than ten pounds] and I couldn't eat anything. I had these abscesses in my rear end and was really ill. So I started on the treatment, and it was a rough ride in the first few months, because you get high fevers and general exhaustion. When it got towards the end of June, I suddenly started feeling better and, by the end of July, a lot better. Last year, I was dead; I couldn't do anything at all. Now I lead a perfectly normal life, with the exception of not eating dairy products."

Joe Solek, a 47-year-old dentist from Chicago who was diagnosed with Crohn's disease in July 1997, is also on Hermon-Taylor's antibiotic regimen.

"It's really funny because my internist, the guy who has been doing my colonoscopies since 1986, thinks [the antibiotic regimen] is unnecessary treatment. ...But my last colonoscopy was in December 1998, and he said to me after the procedure, ‘Boy, this is very close to normal.' He said if he had to rate my disease on a scale of one to 10, with 10 being the worst, I'm a one. I asked if that was due to the medication, and no one really knows.

"I'm a dentist," continues Solek. "[Because of] the lack of research and clinical trials, I'm surprised I'm doing this. But all I have to lose is money. Is this the placebo effect? I don't know. Why couldn't this theory [of a connection between Mp and Crohn's disease] be the case? Especially in light of the fact that it causes a very similar disease in cows. It's an uphill battle because traditional medicine doesn't think there's a connection."

"Now, of course, the proper way in clinical research is to do a pilot study and expand into a randomized control trial," says Hermon-Taylor, who acknowledges that the results Crohn's patients exhibit from his antibiotic regimen are only a step above anecdotal evidence. "We were actually denied the funding to do a randomized control trial. So I did the best that I could with what I've got." To date, 25 of Hermon-Taylor's grant proposals -- submitted both in the U.S. and Great Britain -- to study Mp and its possible connection to Crohn's have been rejected.

Chiodini lost count of the rejected grant proposals he submitted to the National Institutes of Health, the USDA and the Crohn's and Colitis Foundation of America between 1984 and 1994. He estimates having submitted over two dozen, and not a one was funded. In 1994, he lost his job at Rhode Island Hospital due to a lack of funding and was later thrown out of the building for smoking in a nonsmoking area. On March 25, 1994, the hospital packed up the entire contents of his laboratory and shipped it to an unheated storage space, effectively destroying 10 years worth of research. He has not worked in a laboratory since.


Grassroots activism

Alan Kennedy was on a family vacation at the age of 12 when he fell ill. His symptoms looked like appendicitis. In the course of surgery, the doctor discovered it was not appendicitis he suffered from, but Crohn's disease.

It wasn't until after his second surgery in 1996, almost 20 years later, that Kennedy heard about Hermon-Taylor's work. He traveled from his home in Ireland to Hermon-Taylor's office in London to visit the professor and learn about the possible connection between Mp and Crohn's.

A computer scientist, Kennedy immediately recognized the impact a Web site could have in getting the word out about this theory and the underfunded but important research supporting it. After conducting a six-month exhaustive investigation of the available literature with the help of Hermon-Taylor, Kennedy launched a Web site on March 16, 1997.

Karen Meyer of Temple Terrace, Fla., stumbled onto Kennedy's Web site shortly after it went up. Her son had Crohn's, and she took the information contained there to his doctor, who agreed to prescribed Hermon-Taylor's antibiotic regimen for him.

"About a year after he began the [antibiotic] treatment in May 1997," says Meyer, referring to her son, now 24, who was diagnosed with Crohn's at age 17, "he had to have another surgery, and his surgeon observed substantial healing and said he had never seen anything like it. Since then, my son has experienced rapid weight gain and is doing well.

"It was just so unbelievable to me that nobody was addressing the problem," continues Meyer. "So I began, out of frustration, calling the Department of Agriculture in Florida. I got referred up the line, and I kept getting closed doors, passing the buck, getting bounced from FDA [Food and Drug Administration] to USDA to the Center for Veterinary Medicine. And I never came up with a good answer. There was just no concern whether people are being infected every day. When I heard that this was something that for 15 years could have been dealt with, it seemed too unbelievable to be true."

A situation that seemed unbelievable to Meyer is, in fact, not without precedent. Stomach ulcers had long been thought to be caused by excess stomach acid. In the 1983, an Australian researcher named Barry Marshall proposed that ulcers were caused by a bacterium known as Helicobacter pylori. The theory and Marshall were ridiculed until it was slowly but surely proven true over the next decade. This situation is now cited quite often by researchers who suspect Mp causes or contributes to Crohn's.

But as difficult as it was to convince the medical establishment that a bacterium, not stress, causes ulcers, it was not nearly as controversial as suggesting that contaminated milk might possibly contribute to a debilitating gastrointestinal disease, especially when that disease is thought by a vast majority of the medical community to be an immunological malfunction.

"Once I realized how big this was, I was reluctant to really decide how committed I wanted to be with this," Meyer says. "We had the drugs for my son, I could have stopped there. But I realized, for whatever reason, this dropped into my lap, and I had to have the courage to do what needed to be done. ...A researcher at CDC [Centers for Disease Control] said to me, and I don't want to use his name, ‘What I suggest to you, Ms. Meyer, is that you form a grassroots organization and get politically proactive.'"

So she and Kennedy began communicating via e-mail, and Meyer met two other people, Cheryl Miller and Stephen Merkel -- both of whom came upon Kennedy's Web site while researching Crohn's in hopes of providing answers to their loved ones affected by the disease. Together, the four of them formed PARA, or the Paratuberculosis Awareness and Research Association, in October 1997 and launched their own Web site.

"Before, in order to conduct a grassroots effort without the Internet, it would have been impossible," says Meyer. "Through the power of the Internet, we think we're responsible for bringing the researchers together. Before this, hardly any of them were in contact. Now they're communicating."

In addition to linking researchers from all corners of the globe -- including Australia, Ireland, Great Britain and in the United States, Florida, Texas and Massachusetts -- PARA also embarked on a major lobbying effort, questioning the FDA about milk safety and the USDA about efforts to control Johne's disease, and calling for Congressional hearings and legislation. They attended U.S. Animal Health Association meetings, sparring with the head of National Milk Producers Federation. In a word, they have been dogged.

The FDA -- despite four studies that conclude Mp survives the pasteurization process -- insists that milk is safe, relying on the two studies that show Mp does not survive. In a letter dated Feb. 9, 1998, Joseph Smucker, the FDA's milk safety team leader wrote, "After a review of the available literature on this subject, it is the position of FDA that the latest research shows conclusively that commercial pasteurization does indeed eliminate this hazard" (emphasis added).

In another letter to PARA, the FDA writes, "The available information suggests that only low levels of M. paratuberculosis can be expected to be found in raw milk and, because the organism is very slow growing, only low levels can be expected in milk when it is subjected to the pasteurization process," which is described as "designed to be fail safe."

The USDA insists that the agency is doing everything it can with regard to Johne's disease, despite having allocated less than one percent of its grant budget to a problem that is spreading quickly. The USDA also points to having formed the National Johne's Working Group in 1994. Interestingly enough, the executive committee of this working group consists of three people, two of whom are industry representatives: John Adams of the National Milk Producer's Federation and Gary Weber of the National Cattleman's Beef Association.

The leaders of the dairy industry point to the FDA's determination that milk is safe and the considerable scientific debate as to whether or not Mp is even a human pathogen. "From the dairy industry's standpoint," says Chris Galen, a spokesperson for the National Milk Producer's Federation, a lobbying organization based in Arlington, Va., "it's something that bears watching. But at this point, it doesn't really look like there's a direct correlation between the bacteria and Crohn's disease."

When asked if the public should be made aware that a handful of respected researchers around the world are investigating the possibility that there is a connection, Galen responds, "There are people who think aliens are invading the planet and maybe we should be made aware of that too, but most people would probably agree that there isn't a lot of evidence of that.

"I'm using that as a facetious example," continues Galen. "I'm not trying to characterize those people who think there is a definitive link between the Johne's organism and Crohn's disease as people who also believe in little green men. What I'm saying simply is that the preponderance of the scientific evidence at this time does not indicate that there is a link between Mycobacterium paratuberculosis and Crohn's disease in humans."

"The agencies that are responsible for regulating animal industries and food safety are also responsible for promoting those industries," says Kennedy. "So they suffer from CJD – conflicting job description."

"We have been asking that the retail milk supply in the United States be tested for the presence of [Mp], and they [FDA] refuse to do it," says Stephen Merkel of Cleveland, a founding member of PARA, whose wife has suffered with Crohn's disease since 1960. "They insist that this organism does not survive the pasteurization process. If they're so sure, why not test retail milk? I see only one explanation as to why they refuse to test the milk supply -- they are afraid of what they might find."

Despite the repeated beating of their collective head on the proverbial brick wall, PARA achieved a major breakthrough when they successfully lobbied the National Institutes of Health to conduct a workshop on Crohn's disease in December 1998.

"We went out to the NIH and implored them to look at the science," says Cheryl Miller of Dayton, also a founding member of PARA, whose 5'6" daughter was down to 92 pounds before she began taking an antibiotic regimen similar to Hermon-Taylor's, which was followed by her rapid improvement. "The NIH reviewed the science and put on this workshop. The fact that the NIH took this action tells you that a prudent person aware of the available scientific evidence would be very, very concerned."


The research battle

On Dec. 14, 1998, a host of researchers were brought together at NIH in Bethesda, Md., to discuss the possible connection between Mp and Crohn's. Despite the circumstantial evidence that there exists a relationship, it is hardly a forgone conclusion. Among the impressive group of experts presenting evidence of a possible connection, one presenter took the opposing viewpoint.

"If you had talked to me in 1984, I would have given you the same kind of pitch that Mike Collins gave," says Dr. Herbert Van Kruiningen of the University of Connecticut. "I would have shown you a picture of an emaciated cow, an emaciated human with Crohn's, and I would have shown you a picture of the intestine of a cow with Johne's and a human intestine with Crohn's.

"But in the meantime, an awful lot of evidence has come by, and I would be no damn good as an investigator if I didn't accept that evidence from lab after lab after lab. I made a decision a few years ago that I wasn't going to spend the rest of my life chasing Mycobacterium paratuberculosis when all of this evidence is out there that this isn't the correct organism."

Kruiningen -- although at the same time admitting that Crohn's research has been woefully underfunded -- cites examples of researchers' failed attempts, including his own, to establish a connection between Mp and Crohn's.

"When you have low-budget research, you get low-budget results," says Chiodini. "Most scientists appreciate that negative results are easy to achieve. It is the positive results that take effort."

"It's very hard to prove causation," says Collins. "Critics are fair to say it's still just an association. It's a very complicated disease, and it's a very complicated organism to deal with."

Kruiningen, undeterred in his opposition to the theory, wrote to Dr. Dennis Lang, who helped to organize the NIH workshop, shortly afterwards. "I came away [from the Crohn's disease workshop] with the impression that the M. paratuberculosis proponents had carried the day. It appeared that most of the people there were enamored with the interesting hypothesis, to the point that data to the contrary were secondary."

Despite Kruiningen's objection to the theory, the NIH workshop produced a document concluding that research into the possible connection was not only warranted, but necessary. Lang says that a wide net will be cast in looking for a cause of Crohn's, but most of the research recommendations that were made in the NIH document involve various aspects of Mp and its potential to cause Crohn's disease in humans.

Interestingly, every single NIH research recommendation had been made by Chiodini in the form of grant proposals between 1984 and 1994. Yet despite Chiodini's work -- recognized by those in the field as visionary and well-known to the organizers of the workshop -- NIH neglected to invite him to Bethesda. He attended anyway at the behest of the founders of PARA, who paid for his travel expenses.


The politics of medicine

"What you have to realize is that there is a lot of politics in medicine," says Chiodini, who is still unemployed. "It's not whether you have the proof of something, but whether or not the medical community wants to accept it. Any time you don't follow standard thought, you get into trouble."

Chiodini says he conducted a study as early as 1984 to see if Mp survived the pasteurization process and found that it did. He was unable to get these results published for 10 years. He also says that the National Dairy Promotion and Research Board -- the marketing group that promotes dairy consumption with "Got Milk?" ads, which are funded by an assessment on dairy farmers as well as subsidies from the USDA -- has known for some time that there is a possible connection between Mp and Crohn's. He says shortly after his pasteurization study was published in the Journal of Veterinary Diagnostic Investigations, he was called to a Dairy Board roundtable discussion in Chicago on July 8, 1994, on this very topic.

"There were at least a dozen people there to discuss this issue and to see whether or not the dairy industry should be concerned and what they should do," says Chiodini, who provided a memorandum outlining the meeting's agenda. "The panel stated that they should be concerned and gave recommendations on what should be done. To my knowledge, they never did anything."

The Canadian government has also known about a possible connection between Mp and Crohn's since at least 1994. The Food Production and Inspection Branch of Canada's Agriculture Department produced a Food Safety Risk Assessment paper on "Mycobacterium paratuberculosis and Crohn's disease," which concluded that it was indeed a cause for concern. The document was stamped "Protected -- Not for Distribution."

Chiodini also says he knows of pharmaceutical companies that have been working behind the scenes in preparation for the day this theory comes to light. "You'll be amazed at how quickly the pharmaceutical companies will be out with a product to address it. They're calling this another Helicobacter," he says, referring to the oft-cited ulcer analogy. Pharmaceutical companies were caught off guard when the Helicobacter theory proved true, and are making sure that doesn't happen again, says Chiodini. He says he has talked with a number of pharmaceutical companies about what they should be doing to prepare for the possibility that Mp causes Crohn's.

And the evidence continues to mount. On June 1, two teams of researchers -- from Baylor College of Medicine in Houston and the University of Central Florida in Orlando -- announced at an annual meeting of the American Society for Microbiology in Chicago that they had isolated Mp from the tissue of Crohn's patients, but not from control specimens.

"We are not making any claims that all patients with Crohn's have paratuberculosis, because it is my belief that this is a disease of multiple causes," says Dr. Ira Shafran from University of Central Florida, a gastroenterologist originally from Cleveland Heights. "But it is my belief that this microorganism will be proven as a human pathogen and clearly operative in these patients with Crohn's.

"Dr. Chiodini should really have the disease changed to his name," continues Shafran. "This is not Crohn's disease. That is a catch-all name that has been applied to a variety of inflammatory problems, of which paratuberculosis is one. My concern here as a physician and father of two children is that the animal source of this infection is dairy cattle. ...My population [of Crohn's patients] that is being treated with antibiotics, I've warned them of a possible animal source for obtaining the infection, and I don't want them to reinfect themselves. I've told them to look for ultra-pasteurized milk and to cook their meat well."

"Barry Marshall suggested that Helicobacter caused ulcers, and he was ridiculed," says Hermon-Taylor. "And this was a bug that you could see by looking down the microscope, grow in a simple culture system in the lab, test for immunologically pretty simply, and ordinary tablets readily available to doctors could make it go away. And it still took eight years for the penny to drop.

"Now we've got a bug that you can't see, can't grow, hides under the immunological radar, is a bastard to kill, and the problem it's causing is far, far greater. If Rod Chiodini and I are wrong, the magnitude of the problem will only be the economic losses of farm animals, which is costing the U.S. somewhere between $1.5 and $2 billion a year. If Rod Chiodini and I are right, then, oh dear, oh dear. We have a big problem. It's going to take a lot to put it right."

(All people mentioned above have been contacted)


"Tina's good, the dogs are too. I've been doing some mountain biking this weekend, went to a cookout, and did some chores."-Mark


I'm glad to hear your keeping busy. As you know I too have been busy myself. I will probably need surgery whether I begin treatment with the regimen i've arranged or not. I don't plan on allowing anyone to cut me until my research is put into effect. (No Regimen = No Surgery). I'll be a stubborn bull until my dying breath. I was right about the Hypoglycemia, & further testing being needed. I knew something was "causing" the Hypoglycemia, yet they continued to ignore my research, and suggestions. Had they listened to me initially then we would have arrived at the Crohn's Disease diagnosis much sooner.

"How are you feeling? Did the doctor get your meds dialed in yet?"-Mark

I'm feeling terrific mentally, and spiritually. My hopes are high, but I'm unfortunately doing much worse physically since the last time you saw me. I'm constantly in pain, and bleeding again. My spirits are high though, and I have nothing to lose at this time. I've already decided to "not" accept this disease. It will either be the end of me, or I'll find a way to alleviate the condition enough to function like anyone else (e.g. remission). Dr. Pleet was presented with my Thesis, and a brief primer such as I've presented to you up above. I have not spoken with him, but his nurse gave him the information. I'm almost positive that he will reject my research, and tell me I'm crazy. To be honest his rejection will only further my cause, and strengthen me. I've been given this illness for a reason, and although I'm not to happy about it, I'll do my best to find the solution. I've already begun looking for another Dr.


At this time I currently have the names of the medications, which will more then likely provide a cure. If anything I can expect remission if done correctly. I am still doing research to conclude what the duration, and dosages will be on the regimen. The thesis I've put together is currently online, and consists of over 600 pages of research connecting everything regarding the story which you read above. Below are the medications which in combination should eradicate the cause of my illness.


Rifabutin (Mycobutin, Pharmacia & Upjohn), -An oral drug approved by the FDA for preventing MAC in people with AIDS and CD4 cell counts of less than 75. Rifabutin is also used in combination with other drugs for the treatment of active MAC infection. Possible side effects include neutropenia, eye and muscle irritation and a brown-orange discoloration of skin and urine.


Clarithromycin (Biaxin/Klacid/Klaricid, Abbott Laboratories)
An antibiotic approved for the treatment of MAC and also used for preventing this disease in people with AIDS. Side effects include diarrhea, nausea and abnormal taste. Clarithromycin may cause severe abdominal pain at high doses.


Clofazimine (Lamprene, Novartis). An anti-leprosy agent sometimes administered in combination with other drugs to treat MAC. Possible side effects include gastrointestinal upset, skin discoloration and rashes.


ethambutol-An antitubercular agent that inhibits the transfer of mycolic acids into the cell wall of the tubercle bacillus. It may also inhibit the synthesis of spermidine in mycobacteria. The action is usually bactericidal, and the drug can penetrate human cell membranes to exert its lethal effects.

azithromycin-An antibiotic approved for the treatment of chlamydia and bacterial infections of the skin and respiratory tract. It may also have activity against MAC, toxoplasmosis and cryptosporidiosis.
At this time I am no longer eating dairy products that are not heated specifically to kill the bacteria. I even heat my milk on the stove using a large boiling pan. I have not had any problems with dairy since I began doing this. I am disgusted at the possibility of getting sick based on my own governments lack of response to a potentially dangerous infectious agent.

In concluding my research I realized that this problem was much bigger then I had previously thought. I am not alone though. I contacted Para immediately (Para - Paratuberculosis Awareness, & Research association). I told them everything had learned while researching, and I also contacted my Senators, and my Representative. The funding needs to be specified for this specific problem, and research need to be done. It needs to be written in stone, because far to many people with this disease are not as stubborn as I am, and they won't be willing to go in search of a cure, that might be right under their noses. I have contacted Lahey Clinic, Hartford Hospital, Baystate Hospital, and Providence Hospital searching for a specialist who would be willing to apply my experimental treatment. Currently Baystate, Providence, and Lahey have responded. I have not spoken to Lahey or Providence via phone though. Baystate contacted me by having "The professionals" contact me. I spoke with a women for about 45 minutes, and she "would" have been very useful if I hadn't already applied all the ideas, and knowledge she offered already. She did inform me that an infectious disease specialist with experience with (MAP) could be sought, although that is a long shot. I did receive an e-mail from Dr Thayer from Providence, and he's worked with Chiodini in the past. I may make the trip to see him, but I have to speak with him on the phone, and gather some information first. I don't even know if he's accepting patients, or if he would be willing to see me. I do know however that he's treated Crohn's Disease patients with mycrobial antibiotics, and macrolide antibiotics resulting in huge success rates of remission.
"Drop me a line some time."-Mark

Well I hope I dropped more then a line, in fact I hope I dropped a few. *ha ha*. I hope I've provided you with something worth reading, cause I know I've learned a bit more then I really needed to. I'm disappointed, yet invigorated regarding what I've learned. I hope all is well, and I'll provide some links below for you, so you can talk with me online at some point.

Your Brother,
Michael

You can find me at Social Connection chatting. Mom also has an account there. I've made an account for you, and all you have to do is log in. I used markp as the UN as it's simple to remember, and our old phone number in E.L. for the password. You will find both below.

Your Username:

Your Password: Social Connection
www.social-connect.com

All you have to do to start chatting is click the link above, and then insert the username, and password in lower case in the colum provided on the Social Connection web page. When you log in it will place in into a room with tons of people. My name is MIKE58SC and my name is usually red, because I host the chat, and welcome people. Go there sometime and learn how to use it. I'm "always" online anyway, and it's an opportune time to brush up on your lame typing skills *he he*

I have updated my website, and you can see a few sections. I'll post the most interesting sections below for you.


My Car Section: http://www.angelfire.com/ct/pontiacmuscle/mycar.html

Main Page: http://www.angelfire.com/ct/pontiacmuscle/index.html

Contact: http://www.angelfire.com/ct/pontiacmuscle/contact.html

The section listed as My Car is basically all about the Lightning, and pictures I took of it. You will find some basic information about the pontiac, and some other racing related stuff i'm involved in.

The section listed as Main page is just as it sounds. It's the main page to my web site where most people come when they first arrive at the site.

The section listed as Contact is all about Suzanne, and myself. You will find there is a public diary which can get pretty graphic, a page me link so you can send an e-mail to my cell phone in real time if you have the phone number. The phone number is ***-***-****.

P.S. Enjoyed having you visit that day. I just wish we could have a disease free relationship, so that I can kick your *** in all the activites we both like to do so much. (e.g Basketball, running,). Someday perhaps."