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.
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.
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.’”
Lyme disease resources
• 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