A Disease in Debate

Here is a great article sent to me. Please take time to read it. Some great Websites are listed in it.
Be well,
Richard

A disease in debate
A Bend woman has chronic Lyme disease, but her diagnosis and treatment are controversial
By Betsy Q. Cliff / The Bulletin
Published: May 07. 2009 4:00AM PST




• Oregon Division of Public Health, Lyme disease information: www.oregon .gov/DHS/ph/acd/diseases/lyme/lyme.shtml
• Infectious Diseases Society of America: www.idsociety.org
• International Lyme and Associated Diseases Society: www.ilads.org
• Jamie Israel’s Web site: www.jamiesmiracle.com
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The woman in the YouTube videos is pretty, but thin and pale.

In her first video post, from a year ago, Jamie Israel sits in a bathroom in her house near Summit High School in Bend, describing her symptoms. Pushing hair out of her face, she says she has severe insomnia, a racing heart, pain and fatigue. She’s having a hard time, she says, caring for her then-3-year-old son.

In one short post, she cries, worried she can’t take it anymore. “I’m so sick,” she says to the camera. “I can’t handle it.”

Israel believes she is suffering from chronic Lyme disease caused by a tick bite years ago. Her symptoms have dismantled her life piece by piece.

It started with aches in her jaw, then it became a stiff neck and fatigue. Insomnia set in. Her weight dropped. She became too dizzy to drive. Finally, it culminated in seizures, sending her to the emergency room.

She cannot find a doctor in Central Oregon who will treat chronic Lyme disease. Instead, the 32-year-old now flies to South Carolina every month for treatment.

Many physicians do not believe her disease exists. Instead, they say it’s likely something else, perhaps fibromyalgia, chronic fatigue syndrome or a psychological illness. She has been to at least eight doctors since her illness began.

There are hundreds or perhaps thousands of patients like Israel in the United States. They are often seriously ill, with debilitating symptoms. But they are caught in one of the most heated controversies in medicine.

Some doctors believe that chronic Lyme disease is a serious problem that needs to be treated aggressively with antibiotics. In the other camp, an equally adamant group of physicians believes that Lyme disease is over-diagnosed and over-treated; some doubt the existence of chronic Lyme disease.

Lyme disease, everyone agrees, is the most common infection caused by an animal in the United States. The Centers for Disease Control and Prevention estimate that about 20,000 people each year are infected, primarily through the bite of a tick carrying the bacteria. Though the vast majority of cases occur in the Northeast, the number of cases in Oregon is growing. In 2008, according to the state’s Public Health Division, there were 38 cases, a 21-year high.

Caught early, Lyme disease is easily treated. A two-week course of antibiotics is all it takes to wipe out infection.

Once it gets past the early stages, nearly every aspect of Lyme disease is controversial — from its definition to its diagnosis to its treatment. Meanwhile, patients like Israel end up caught in the middle, living with symptoms for years, trying to get help.

“I think if it had been cancer, maybe, people would understand it more,” said Israel. “People believe in stuff that’s on TV, and if it’s not talked about they don’t know or understand what it is.”

As it is, she has had trouble finding support, not only from physicians, but from friends. She can find few of either, she said, willing to help her.

Israel and others like her did not start the controversy and do not debate the data on treatments or diagnostic tests. They don’t often care whether a test is sensitive or how narrowly the disease is defined. They are just trying to feel better.

A diagnosis without treatment

Israel never saw the tick that she thinks bit her. There are a couple of times that it might have occurred, she wrote in a letter soon after she started feeling sick. She recalled a small scab on the top of her head that she could not get off and, another time, when she had a blistered wound on her ear. At the time, she thought little of either case, and both healed quickly.

Then, one morning several years ago, she awoke with a neck so stiff she couldn’t move, she said. “I woke up and it was like, bam.” She thought she had spinal meningitis; her doctor dismissed that but put her on a week of antibiotics.

Her symptoms disappeared immediately, and Israel stopped taking the antibiotics. A few days later, symptoms began again. Her heart raced, she couldn’t sleep, she had a fever, her lymph glands were swollen, she had hallucinations and her joints hurt.

She began going from doctor to doctor in Bend, trying to figure out what was wrong with her. None of them diagnosed her with Lyme disease; many said they didn’t know what was wrong. At least one, she said, told her she was likely suffering from bipolar disorder, a psychiatric illness, and put her on medications to treat that disease.

As her physical symptoms persisted, her mother took charge. She drove Israel to Oregon Health & Science University in Portland where, Israel said, a doctor told her he thought she had Lyme disease. The Bulletin was not able to reach the doctor she identified.

Defining chronic Lyme

Part of the reason that doctors disagree about who has Lyme disease is that there is no objective way to diagnose the disease and a lack of agreement about its symptoms.

There are no tests that can definitively diagnose Lyme disease. There are blood tests that look for antibodies to the disease, but these tests are not entirely accurate, according to the CDC. Some people will have false positive results and others with Lyme will have negative results, particularly if tested soon after a tick bite.

Even if accurate, the tests look for antibodies made by the body to fight the disease; they cannot look for the bacteria causing Lyme. So, a positive test could show that a person has been exposed to the disease, but not that he or she is still infected.

“If you get exposed and get treated,” said Dr. John Chunn, a Bend pediatrician and specialist in infectious diseases, “you will be positive 10 years later.”

Because of the limited usefulness of the tests, doctors have turned to looking for symptoms. Within days of a tick bite, most people will notice a rash that looks like a bull’s-eye and spreads out from the site of the bite. If untreated, people develop other symptoms.

Some doctors say that there are a few telltale signs of Lyme disease and that all patients will have a few objective findings. Dr. Eugene Shapiro, an infectious disease specialist at Yale University who helped write the Infectious Diseases Society of America guidelines on treating Lyme disease, looks for the telltale rash, swollen joints particularly in the knees, and Bell’s palsy in patients that live in areas where Lyme disease is common.

He said that based on studies on the first people diagnosed with Lyme, from Lyme, Conn., all showed arthritic symptoms and few other complications. “The typical late manifestation is arthritis.”

His definition rules out many patients, even those who come to him saying they have the disease. “People complaining of chronic Lyme are very common,” said Shapiro. “Actual late (stage) Lyme disease is so rare that general practitioners are lucky to see one patient. ~ Every patient that’s been seen with chronic Lyme disease in my practice never had it.”

Many doctors, and even the CDC, employ a wider definition, including other less specific symptoms in the diagnosis. That means that more patients fit the definition, increasing the number of patients who are treated for chronic Lyme disease in those practices.

Because the tests are unreliable, symptoms are crucial, said Dr. Daniel Cameron, an internist in Mount Kisco, N.Y., and member of the International Lyme and Associated Diseases Society, “I got back to, is the person ill?”

Cameron said that a lot of symptoms of chronic Lyme disease are similar to symptoms of other diseases, making it hard to establish a definitive diagnosis. “Where I see the concern is that you should inform the patient that it could be Lyme and it could be fibromyalgia,” he said.

Cameron said defining the disease narrowly, as Shapiro does, could be misleading patients who may want to know they could have Lyme disease. Some “infectious disease doctors out there don’t mention Lyme.”

Crossing the guidelines

Based on a friend’s recommendation, Israel went to see Dr. Joseph Jemsek last December after years of struggling with her symptoms. Jemsek falls clearly in the camp of doctors who define Lyme disease broadly, and he has amassed a sizeable population of Lyme patients as a result.

Israel brought her medical records, which show a diagnosis of Lyme from a doctor in California, Dr. Steven Harris, and a positive blood test for Lyme. Harris’ office said it could not confirm the diagnosis because of federal privacy regulations.

Jemsek said he spent two hours with her in his South Carolina clinic when she first arrived, talking to her and noting her symptoms.

Israel, Jemsek said, was in serious condition when he saw her. “She was failing dramatically in a very serious way in her ability to conduct daily affairs.”

For Israel, Jemsek has been a godsend. He takes her seriously when she felt others did not, and, for the first time in years, she has hope that one day she will feel better.

But Jemsek has been the subject of intense scrutiny for his treatment of Lyme patients. His critics say that he treats patients with no evidence of Lyme disease and that the treatment he employs, long-term antibiotics, is at best ineffective and at worst dangerous.

He practiced in North Carolina until several years ago, when the North Carolina Medical Board brought a complaint against him, alleging that he misdiagnosed Lyme disease patients and prescribed treatment outside the “recognized standards of treating Lyme disease.”

In 2006, his license was suspended for a year. He has since moved his practice to South Carolina where he continues treating Lyme patients.

Though Jemsek and others have been punished by medical boards for going outside the guidelines, those guidelines themselves have come under fire.

Connecticut Attorney General Richard Blumenthal last year investigated the writing of the Lyme disease guidelines by the Infectious Diseases Society of America and found significant conflicts of interest among the members who served on the panel, including conflicts with insurance and pharmaceutical companies.

The society agreed to rewrite the guidelines with independent oversight, a process going on now. The society plans to hold a public hearing in July in Washington, D.C.

Antibiotic treatment

Those who write the guidelines believe that the type of treatment Jemsek gives patients could be harmful.

“There is significant evidence of costs and no evidence of benefit” of long-term antibiotic therapy, said Shapiro, one of the authors of the guidelines.

He discussed an oft-cited study of about 100 patients with Lyme disease published in the New England Journal of Medicine in 2001 that found that the patients who took antibiotics for three months showed no more improvement in symptoms than patients who took a placebo for three months. Shapiro and others in his camp said the study is evidence that long-term antibiotic therapy does not work.

Many infectious disease physicians, including those in Oregon, subscribe to that notion and dismiss those who would prescribe longer courses of antibiotics.

“The arguments to the contrary have not been widely accepted by most of the people in our discipline,” said Dr. Richard Bryant, a Lyme disease specialist at OHSU. “We’re not accusing anybody of being stupid, we just don’t have evidence of being persuaded to their arguments.”

Bend specialist Chunn said long-term antibiotic therapy is not needed because the bacteria are so easy to kill. “This bacteria dies so easily you can’t believe it. It just rolls over and dies.”

Not so, said Jemsek, on the other side of the fence. “Nothing could be further from the truth,” he said. Far from being hard to kill, the bacteria are highly adaptable and can hide in any number of organs in the body.

Jemsek, like Shapiro, cites his own set of studies, also from peer-reviewed medical journals.

As an example, he cites a 1999 study published in the Annals of Medicine, which found that after three months of antibiotic treatment, some of the 165 patients treated still had symptoms. The study concluded it’s possible that the bacteria were not eradicated during the treatment.

Jemsek also relies on laboratory work showing that the bacteria themselves have a number of defense mechanisms that could make them hard to kill with short courses of antibiotics.

Other physicians, too, say it’s unclear that the bacteria are as easy to get rid of as some say. “It’s easy to kill if you do it at the time of the rash,” said Cameron. “It’s more difficult after that.”

Cameron said that one main problem is that, because there are no good blood tests for the bacteria, it’s nearly impossible to tell if the bacteria have been eradicated. “You can’t see it ~ it becomes more difficult to prove there’s (bacteria) present.”

Without tests, physicians must rely on whether symptoms are still present. Not only does the measure become much more subjective, but it can be difficult to tell whether the symptoms are caused by Lyme disease, the side effects of treatment or something else altogether.

Healing

Israel has chosen to fall into Jemsek’s camp. She’s committed, she said, to months of antibiotic therapy, though it has vicious side effects that leave her sick for days at a time.

She knows that her treatment course is controversial and is aware that many doctors think that her therapies now will likely do her more harm than good. Still, she feels it’s her only hope for relief.

She lives in Portland now, temporarily. She is there because some people in her family, she said, don’t believe she has Lyme disease. She moved in with her sister, who has been supportive.

Her days are quiet. She makes breakfast in the morning. She spends a lot of time in her room, on the laptop that often sits on her bed, corresponding with others in the same situation. She watches movies. She sees her son, still living in Bend, once a month.

She recently began a regimen prescribed by Jemsek that includes hooking herself up to an IV line every day. Two days a week, she gets saline solution to help reduce the side effects of her treatment and to keep her blood pressure up, a complication of her disease, Jemsek said. Three days a week, the bags contain antibiotics.

The antibiotics sicken her; some mornings she needs help making breakfast. But she feels she is getting better. Lately, she’s developed a mantra that she uses to get through it. “When I’m really, really sick,” she said, “I’m shaking and puking and in my mind, I’ll just go, ‘I’m healing, I’m healing.’”

Betsy Q.
Cliff
can be reached at 541-383-0375 or bcliff@bendbulletin.com.

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A Must Read for Everyone !

Hello my friends,

I have borrowed this article from Michealene Cristini Risley. Her blog artice is absolutely a must read for everyone who might like to know about Lyme disease. Kudos to her for doing such a fine job in her article. I originally found it on this link:http://www.huffingtonpost.com/michealene-cristini-risley/lyme---emerging-disease-o_b_180728.html. I always give proper credit to articles I find and use on my blog. The object is to get as much quality information out there as possible. I hope you will take the time to read this article.
Be Well,
Richard
Michealene Cristini Risley
Posted March 30, 2009 | 11:47 AM (EST) BIO Become a Fan Get Email Alerts Bloggers' Index
Lyme - emerging disease or hidden epidemic?



Thomas Gray, the English poet once said, "Ignorance is truly bliss". "Bliss" is a wonderful form of denial if you are in the throes of disease, such as Lyme. The illness can be a painful and debilitating process, fraught with complicated treatments and medical ignorance. One can accept ignorance with an emerging disease, yet not from the organization that is responsible for setting guidelines for treatment such as the Infectious Diseases Society of America:
http://www.idsociety.org/.

One gets angrier when you begin to question the root of that ignorance in the national governing body. Is the behavior based on lack of knowledge or more subversive? Is there an ulterior motive to hide the truth of this ailment? The IDSA guidelines are used by health practitioners to treat the disorder and by many health insurance companies to make coverage decisions. This is the point where ignorance turns into systematic deception, when two parties attempt to squelch doctors who in their treatment have discovered that these guidelines in many cases do not work. These doctors have come under fire, in some cases losing their licenses for assisting people debilitated by this disease. There has been widespread anger by "lymies" (this is what we call ourselves) about controversial treatment options and inadequate guidelines. Still, nothing is being done, and people continue to get sick.

Last May, Connecticut Attorney General Richard Blumenthal announced that his antitrust investigation "uncovered serious flaws in the Infectious Disease Society of America's process for writing its 2006 Lyme disease guidelines..." "The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care," Blumenthal wrote. "They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions." http://www.ilads.org/press_2_07.htm

Several doctors in key roles on the panel were found to have conflicts of interest. "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."

It is not just the IDSA, The Center for Disease Control http://www.cdc.gov/ncidod/dvbid/lyme/states the following: "Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics." For those of us who have Lyme disease, a few weeks of antibiotics would not begin to attack the source of bacteria let alone the co-infections and dormant phases of the illness. Unfortunately, without proper treatment, the disease takes a stronger hold on the infected; making it much more difficult to cure.

For those of you who are lucky enough to not have any interaction with the disease or people infected, let me explain what Lyme disease is. Lyme disease is a bacterial infection caused by the bacteria Borrelia burgdorferi (Bb) that is commonly contracted from a deer tick bite. Researchers are also discovering that other insects such as; mosquitoes, fleas and lice may also transmit the disease.

Early Lyme disease can produce a wide-range of symptoms and is different in each person. In addition to the initial diagnosis, Lyme can carry many co-infections which can make a person much sicker. The treatment options are varied and most aggressive treatment forms are not supported by traditional western medicine. For now, those of us who have the disease are left on our own to find a treatment that works. It is terribly frightening.

A few years back I had spinal surgery-so I know what serious, debilitating pain is-and I would gladly opt for additional spine surgeries if I could get rid of Lyme disease. It is that debilitating.

Other transmission confirmations that the general public may not be aware of; Lyme disease can be transmitted in uterus, through breast milk and blood transfusions. Some Lyme specialist believes that the disease can be sexually transmitted since the bacteria can be found in saliva and semen; this form of transmission is still in question.

Another troubling aspect of the disease is ability to diagnosis the illness. In many parts of the United States, (and Lyme disease is everywhere) the diagnosis and testing are faulty. In the documentary "Under our Skin" http://www.underourskin.com many of the issues behind this disease are discussed. At one point, in the documentary, a series of "Lymies" show up on the screen. Each person states the number of doctors it took to get a proper diagnosis. Some were searching for years. My search for a diagnosis took five months and twenty-one doctors. Twenty-one doctors in the heart of Silicon Valley and in Stanford Hospitals' backyard. Before I got the diagnosis, I was told that I was pre-menopausal, iron deficient, that I had Addison's disease, Cushing's disease, Adrenal Fatigue and post-trauma from my imprisonment in Zimbabwe: http://www.huffingtonpost.com/michealene-cristini-risley/gratitude-musings-after-_b_62791.html

Other myths that need to be challenged include the statistics on the prevalence of Lyme disease. I contacted the CDC and talked to the San Mateo County Health Department, for the most part they were less than helpful. I was told by the San Mateo County Health Department that I am the only case of Rocky Mountain spotted fever, (another co-infection) in the state of California in over 15 years. I don't believe them. Other thoughts to convey to your physician:

• The number of cases, the geographical scope and the proportion of afflicted that are severe cases needs to be reviewed. Lyme disease is not decreasing, it in increasing. You can get Lyme disease during the winter.
• Over 50% of those people infected by Lyme disease do not get the distinguishing rash or Bull's eye.
• Over 50% of those with Lyme disease get a false-negative on the testing.

We do know that Lyme disease can be debilitating. The disease needs to be researched to figure out all transmission modes for this illness. Since testing for this disease is inadequate, more research needs to be done to determine better testing mechanisms. In my own experience and in reading books such as "Cure Unknown": http://www.cureunknown.com/ so many stories of doctors and facilities that do not believe that the disease exists.

Insurance companies have typically refused paying for treatments. I personally know that insurance companies are refusing many of my costs. This weekend, my insurance company, Blue Shield of California would only pay for 6 pills to rid me of parasites caused by the immune system fallout from Lyme. In order for me to get the proper prescription of the full 30 pills and to rid the parasite, I had to pay over two-thousand dollars for the additional 24 pills. I purchased enough for the weekend and will start to call Blue Shield on Monday. I wish I was kidding.

Many people who have Lyme disease have sounded the alarm, yet the medical establishment is not listening. Why are there so many disbelievers in Western medicine? Why are insurance companies denying the very basic of claims? If the IDSA guidelines are in question, shouldn't the insurance companies be reviewing what is covered?

Two weeks ago, I was so ill with Lyme, that I thought I was going to die. I was getting neurological symptoms, my right leg was caving in, and my mind would not work. I called the following hospitals; Stanford Hospital, Mayo Clinic, University of California-San Francisco, not a one of these top institutions would take me as a Lyme patient. I start to get an inkling what is must have been like at the beginning of the AIDS epidemic.

There are many issues facing our country right now. For me, Lyme disease is at the top of that list. Too many people are becoming debilitated from this disease, some are dying. It is time that the medical establishment takes the politics out of lyme and start practicing they oath they took to help the sick. You can make a difference. Get on-line, call your congress-person, call the White House at (202) 456-1414. Have a conversation with someone who has LYME disease. Help us to take action before Lyme's disease spreads further.

To each his sufferings: all are men,
Condemned alike to groan,
the tender for another's pain;
the unfeeling for his own.
Yet ah! Why should they know their fate?
Since sorrow never comes too late,
And happiness too swiftly flies.
Thought would destroy their paradise.
No more; where ignorance is bliss,
'Tis folly to be wise.

Lyme Disease and Rage

Hi my friends,
This is an interesting article concerning the current public discourse of Lyme Disease and whether it can cause incidents of rage.

I hope everyone is keeping up with the ISDA's current attempt to stop the treatment of Lyme disease with long-term antibiotics. I hope to post an update soon.

Be well,
Richard


Pastor killing: Another act of violence attributed to Lyme disease
March 9, 2009
From the Psychology Today blog, Emerging Diseases
By Pamela Weintraub

http://blogs.psychologytoday.com/blog/emerging-diseases/200903/pastor-killing-another-act-violence-attributed-lyme-disease
or http://tinyurl.com/ctxmlu

Here's a quick post to supplement my story on the chimp attack in
Connecticut, which some pundits attributed to a rage reaction caused by
Lyme disease.

On the heels of the rage-filled chimp story comes a human version: This
weekend a man opened fire on a pastor in a church in Maryville,
Illinois, murdering him with a rain of gunfire. Here, too, the
explanation for the attack has been given as psychiatric illness caused
by Lyme disease. Infected by a tick on the family farm in the early
1990's, the young man was, his family said, left with lesions on his brain.

There's no question that Lyme disease is a neurological illness. It has
been associated with neurological disease for decades in rigorous peer
review in the top medical journals in the world.

Read the complete blog post and join the conversation:
http://tinyurl.com/ctxmlu

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