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    Cure Unknown: Inside the Lyme Epidemic
    Cure Unknown: Inside the Lyme Epidemic
    Cure Unknown: Inside the Lyme Epidemic
    Ebook724 pages11 hours

    Cure Unknown: Inside the Lyme Epidemic

    By Pamela Weintraub

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    About this ebook

    The groundbreaking, award-winning investigation into Lyme disease—the science, history, medical politics, and patient experience—now with a brand new chapter.

    When Pamela Weintraub, a science journalist, learned that her oldest son tested positive for Lyme disease, she thought she had found an answer to the symptoms that had been plaguing her family for years—but her nightmare had just begun. Almost everything about Lyme disease turned out to be deeply controversial, from the microbe causing the infection, to the length and type of treatment and the kind of practitioner needed.

    On one side of the fight, the scientists who first studied Lyme describe a disease transmitted by a deer tick that is hard to catch but easy to cure no matter how advanced the case. On the other side, rebel doctors insist that Lyme and a soup of "co-infections" cause a complicated spectrum of illness often dramatically different – and far more difficult to treat – than the original researchers claim. Instead of just swollen knees and a rash, patients can experience exhaustion, disabling pain, and a "Lyme fog" that leaves them dazed and confused. As patients struggle for answers, once-treatable infections become chronic.
    In this nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease, Pamela Weintraub sheds light on one of the angriest medical disputes raging today. The most comprehensive book ever written about the past, present and future of Lyme disease, Cure Unknown exposes the ticking clock of a raging epidemic and the vulnerability we all share.

    LanguageEnglish
    PublisherMacmillan Publishers
    Release dateJun 25, 2013
    ISBN9781466843578
    Cure Unknown: Inside the Lyme Epidemic
    Author

    Pamela Weintraub

    Pamela Weintraub is an author and journalist who specializes in health, biomedicine, and psychology. She is currently a consulting editor at Psychology Today and executive editor at MAMM magazine, and has served as editor in chief of OMNI and staff writer at Discover, Weintraub has written hundreds of articles for many national publications, including Redbook, Ms., McCall's, Audubon, and Health, to name just a few. She is the author or co-author of more than a dozen books, including Cure Unknown: Inside the Lyme Epidemic. She lives in Connecticut.

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      Book preview

      Cure Unknown - Pamela Weintraub

      Prologue

      Second Journey Out

      In my first encounter with Lyme I was swept from a healthy, exuberant life to the distant, lonely shore of a controversial disease. As the exhausted, symptomatic wife and mother of Lyme patients, one of them desperately sick, my struggle to beat back illness was initially consuming. Trapped in a new reality, I learned the complex idiom of illness, but all I really wanted was to find my way home.

      My second journey through Lyme, ventured as a journalist, was far more strategic than the first. Instead of an unwitting mother negotiating a disputed diagnosis, I was a professional investigator, a science journalist—the job for which I had been trained and paid by the top science magazines in the country for twenty-five years. My personal experience had been frightening, but as a longtime science journalist, I knew it was subjective. Subjective experience is powerful, but ultimately anecdotal. Those trained in the scientific method, and those who report on it, understand that subjective experience falls far short of proof. Proof in science means validation by experiment. Yet to be valid, the experiments themselves must be free of bias and must be of adequate scientific design. I would have to look into all of this—carefully, and with expert input—to understand the research framing Lyme.

      A journalist doesn’t report only on studies, of course, but also on people—what they experience, say, and feel. Laboratory science is rarely adequate to distill the fear and betrayal felt by patients when misunderstood. Even when blessed with empathetic natures, biomedical scientists may not readily grasp a patient’s journey through the desolate outback of a disease. So my job was not just understanding the science, but also reporting back from the front, from the cul-de-sacs, split levels, and toy-strewn yards of the suburbs, where patients got sick and endured the illness itself.

      The more people I interviewed, the more I realized that the distance between the scientific studies and the patients’ lives was vast. Peer-reviewed articles dismissing the Lyme patients’ mental impairment as mild, for instance, did not remotely capture the experience of having a brain infection—the angst of falling behind in school or feeling perpetually foggy and confused. A young woman forgot how to dial home on her cell phone and found herself stranded. A boy did his math homework each night, but by morning his knowledge was a blur. The clinical language of many studies made Lyme fatigue seem minimal, while patients crashed with an exhaustion so profound they could not sustain employment or care for their children and homes. Memory loss calibrated in percentage points was presented as mere annoyance in the studies, but it translated, in patients’ lives, to hours spent navigating local highways, lost in their own neighborhoods, or forgetting a frying pan on the stove and setting the house ablaze. A programmer could no longer hold codes in his head—an office manager could not keep files straight.

      As I interviewed patients, I found they were often most disabled by the very problems mainstream studies had tossed out as too subjective or vague to count as Lyme disease. Headache, fatigue, and mental confusion were just too broad, too general, to be of relevance in actually diagnosing Lyme disease, the Infectious Diseases Society of America (IDSA) said in its 2006 guidelines. These symptoms were the same as those found in chronic fatigue and the pain syndrome, fibromyalgia, the Centers for Disease Control and Prevention added—how could you tell the diseases apart? Unless a patient had measurable signs of Lyme disease—the very ones used to define it in mainstream studies, like swollen knees, heart inflammation, and quantifiably damaged nerves—the mainstream experts wouldn’t concede that the patient had the infection at all.

      A contentious tug-of-war over what a Lyme patient looked like had spurred the battle from the start. Because those doctors first describing the illness were trained in rheumatology and dermatology, the objective signs they recognized included swollen joints and the classic Lyme rash. Later, neurologists joined the team, adding such specialty-specific signs as encephalitis or meningitis (swelling of the brain or its lining) and nerve damage. As these signs of disease intensified, according to such experts, so did antibodies in the spinal fluid and blood.

      The view was at loggerheads with the experience of the sickest of the patients, who lacked the sanctioned signs and failed the designated tests. Falling outside the mainstream construct they defaulted to Lyme doctors, mostly ensconced in the suburbs. In this alternate Lyme universe, symptoms like confusion and fatigue, along with partially positive tests, were factored into the equation, serving as justification for treatment with antibiotics, often for months on end. Rejected as false by mainstream medicine, said to have fibromyalgia, chronic fatigue syndrome, or simply depression by the Centers for Disease Control and the National Institutes of Health, the patients nonetheless sought treatment for the only thing they felt they’d been exposed to—Lyme disease. After treatment with antibiotics, many eventually got well.

      Did these people really have Lyme disease? Were they actually sick? Did they count? Those were the questions swirling around the Lyme debate.

      On one side of the equation are people like C. Ben Beard, Ph.D., chief of the Bacterial Diseases Branch of the Division of Vector-Borne Infectious Diseases of the CDC. These people are very sick, and we feel great compassion for them. Their lives have been destroyed, Beard says, but based on their symptoms, we’re just not convinced that they have Lyme disease.

      Seeing things differently are physicians like Brian Fallon, a psychiatrist and director of the Lyme and Tick Borne Diseases Research Center at Columbia University. Patients without objective signs can still have symptoms of Lyme disease—cognitive problems, fatigue, joint pain, mood swings, he states. Because those symptoms weren’t objectified early in the history of the disease by the specific specialties first involved, many doctors still think they don’t count, he says, but they do. There are other ways of defining illness and objectifying signs and symptoms of disease.

      If a doctor asks the patient whether he’s tired and the patient responds, simply, ‘yes,’ without any detail, there is nothing objective to report, explains Harold Smith, a Pennsylvania physician who treats Lyme disease. But if the practitioner asks for objective information, he can elicit it: Does sleep restore you? Is your sleep associated with drenching night sweats that soak your hair and pajamas? Does it take days to recover from raking a twenty-foot patch of your yard? There are corresponding physical exam findings to go with such answers, including loss of muscle bulk, lowered body temperatures, slow heart rates, and abnormal hormone levels, among many others. These impairments can be objectively measured and, with the right treatment, reversed.

      Yet even patients with accepted signs of Lyme disease, with the exception of the rash, don’t qualify for treatment unless they have positive blood tests to back them up. And the fuzziness of the testing opens another can of worms.

      One part of the problem stems from the lack of a direct test for Lyme disease. There’s simply no way to learn whether a patient is currently infected because as Lyme progresses, spirochetes leave the bloodstream and gravitate into solid tissue. This obviously makes it exceedingly hard to culture living organisms through an ordinary blood test. Instead of detecting infection in blood directly, therefore, doctors test for Lyme’s fingerprints—the antibodies formed in the spirochetes’ wake. Manufactured by our immune systems to try to fight the infection, Lyme antibodies are detected as literal bands on a test known as the Western blot. Because these antibodies can linger even when infection is gone, they indicate exposure at some point in the past, but do not confirm that infection is active at the time.

      Another part of the problem stems from the imperfect antibody pattern chosen by the CDC and other experts to indicate a so-called positive. The pattern of Western blot bands endorsed by the CDC was determined by analyzing blood from a group of classic Lyme disease patients, those with swollen knees and measurably damaged brains and nerves. The test, therefore, reinforced the mainstream presentation of a disease with blatantly measurable signs while excluding patients who had only subtle symptoms like memory loss or subjective complaints like exhaustion and pain.

      Yet the Western blot pattern endorsed by the CDC has been subject to furious debate ever since it was voted in amidst a firestorm of protest at a conference in Dearborn, Michigan, in 1994. The pattern was determined by matching antibodies in human blood with a single strain of Borrelia from Europe, ignoring the full range of proteins expressed by the hundreds of strains reported in the United States and worldwide. Of the many antibodies expressed, just ten were deemed diagnostic. Chosen statistically, these included some so common they were found widely in the healthy population while excluding others specific only to Lyme

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