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Remember the story of three people with blindfolds describing their first encounter with an elephant? One feels the long trunk and says with assurance, "Elephants are like a snake." The next puts his arms around the leg and says, "Elephants are like a trunk of a tree." And the third reaches up to the animal's huge body and announces, "Elephants are like a wall."
None of them is wrong. But each is presenting a picture that is incomplete and enormously misleading. Unless all three begin talking to each other and explaining why they reached their separate conclusions, the information is virtually useless to any effort to understand exactly what an elephant looks like.
That about sums up the struggles in Lyme disease. People have approached the problem from very different angles, and there has been too little effort at interdisciplinary dialogue. Dermatologists have studied the disorder because it is associated with rashes and other skin problems. Rheumatologists have viewed Lyme disease primarily as a cause of arthritic complaints, such as joint swelling and pain, and ophthalmologists have become involved with eye problems caused by the disease. Neurologists have been intrigued by the extent of brain involvement; cardiologists have been summoned when heart problems manifested themselves. But until recently, few of the experts were interacting with each other. The results have been delays in getting out the word about appropriate diagnosis and treatment, battles over scientific turf, and a painful fight for limited research dollars.
Fortunately, some collaborative efforts are finally taking place, and I am hopeful that this situation is beginning to turn around. It is high time. Lyme disease is the most common tick-borne infection in the United States and one of the fastest-growing infectious diseases in North America. That makes it a public health epidemic of major proportions. According to the Centers for Disease Control and Prevention (CDC), the branch of the federal government that monitors disease trends in the United States, more cases of Lyme disease were reported between 1993 and 2000 than the combined total cases reported of measles, mumps, whooping cough, Rocky Mountain spotted fever, rubella, tularemia, diphtheria, cholera, brucellosis, malaria, leptospirosis, leprosy, encephalitis, plague, tetanus, rheumatic fever, anthrax, food poisoning, ehrlichiosis, Q-fever, human rabies, toxic shock, yellow fever, trichinosis, typhoid fever, and Legionnaire's disease.
Nor is Lyme disease confined to this continent. In fact, it can be found on every continent in the world. Infection of both people and animals is worldwide. Infection has been cultured from ticks and humans in Europe, North America, Asia, and Australia. Cases have also been reported in South America and Africa. Researchers have even located infected ticks that help spread disease on seagulls and albatrosses in the Arctic Ocean and in Antarctica.
For some people, Lyme disease is a minor illness that is quickly diagnosed and easily cured. But for others, it becomes a personal nightmare, resulting in lost time from work or school, mental anguish, and sometimes permanent physical disability. In rare cases, it can be life-threatening. Virtually everyone in the United States is at risk for contracting Lyme disease or some other tick-borne infection until the outdoor temperature has dropped well below freezing for several consecutive days. The illness can also strike household pets and some livestock.
The elderly and young are at highest risk. Your chances of contracting the disease are higher if you spend a lot of time outdoors, especially if your work or recreational activities take you into forested areas. For example, two separate studies in New York and New Jersey found that outdoor workers are between two and four times as likely to contract Lyme disease as others. Forestry workers in the Netherlands and England are five times more likely than the general population to contract Lyme disease. Hunters and hikers face special danger. Owning a pet, especially a cat, also puts you at increased risk. Recently, studies have shown that even urban dwellers who use city parks may become infected with Lyme disease.
The disease is a costly burden on the health insurance system and a drain on employers, who are losing their valued workers. In a research paper, "Lyme Disease: Cost to Society," published in the 1993 issue of the actuarial journal Contingencies, which I coauthored with my father, Irwin T. Vanderhoof, Ph.D., a professor of economics and actuarial science, we were able to document that the cost of Lyme disease to society is a stunning $1 billion a year. Most of that comes from unnecessary or inappropriate medical care, lost productivity, legal fees, and other direct and indirect costs.
Despite the human toll, much about Lyme disease remains uncertain and controversial. The research establishment believes that the current diagnostic tests are perfect. Tell that to patients who have been misdiagnosed with multiple sclerosis, Guillain-Barre syndrome, Alzheimer's disease, Lou Gehrig's disease, dementia, fibromyalgia, syphilis, or chronic fatigue syndrome. Some patients have even been improperly diagnosed with leukemia or other cancers. And let myopic physicians explain why Lyme disease patients must see an average of five physicians before someone tells them what is causing their illness.
Some doctors still claim that a simple antibiotic regimen cures everyone. But other physicians whose ailing patients have evidence of persisting infection know that is not so. Enormous gaps exist in knowledge about the risks of fetal transmission, the roots of symptoms that resemble multiple sclerosis and Alzheimer's disease, and the occasional instances when Lyme disease has led to death.
Clearly, there is work to be done.
The multiple symptoms of Lyme disease are caused by the Borrelia burgdorferi (Bb) spirochete, a type of bacteria characterized by a thin, spiral structure (Figure 1-1). This pathogen is named after LDF board member and discoverer Willy Burgdorfer, Ph.D., M.D. By 1996, more than 100 diverse bacterial strains had been identified in the United States alone. Worldwide, 300 strains have been found, three times the number recognized when the Lyme Disease Foundation was founded in 1988. While some of the strains are quite similar, others, even within the same geographic region, are remarkably heterogeneous.
The Bb spirochete is a parasite that is sustained in nature in the bodies of wild animals and is transmitted from one animal to another through the bite of an infected tick. In the United States, two members of the Ixodes family of ticks-popularly known as the black-legged tick (Ixodes scapularis) and the Western black-legged tick (Ixodes pacificus)-are by far the most common and well-established carriers of concern to humans. The lone star tick (Amblyomma americanum) appears to also transmit the Lyme disease-causing bacterium in this country, and there are reports that on rare occasions, the wood rat tick (Ixodes neotomae), Ixodes spinipalpis, and the rabbit tick (Haemaphysalis leporispalustris) have transmitted the infection to humans. The sheep tick (Ixodes ricinus), the hedgehog tick (Ixodes hexagonus), and the Taiga tick (Ixodes persulcatus) have been linked to disease in Europe and Asia. In Australia, the Ixodes holocyclus has been implicated. In the Arctic and Antarctic circles, the Ixodes uriae ticks are the culprits.
Lyme disease has been called the new "Great Imitator"-syphilis was first to earn that name-because of its ability to mimic other illnesses. It begins with an often painless bite of a tick infected with Bb. Most people do not even notice that they have been bitten. As with other spirochetal infections, such as syphilis and relapsing fever, the first symptom of disease is often a local skin rash. The Lyme disease rash is called erythema migrans (EM), but it is not always present, and it, too, can be overlooked.
Contrary to some early scientific thinking, infection may be disseminated through the bloodstream within days of a tick bite, sometimes even before the rash appears. For example, Dr. Patricia Coyle, a neurologist at the Stony Brook campus of the State University of New York, has demonstrated that 67% of Lyme patients with an early rash also had Bb DNA in their spinal fluid, indicating that neurologic infection occurs very early in the disease.
Early dissemination is characterized by a period of inflammation and flulike symptoms, such as headache, stiff neck, mild fever or chills, swollen glands, muscle aches, and fatigue. If the symptoms accompanying inflammation are severe, they can be an indication that the person will develop difficult-to-treat or recurring illness in the future. Often, however, the symptoms are not unduly alarming, and many people do not seek medical attention.
As the inflammation subsides, the accompanying symptoms may resolve on their own. But if the underlying infection has not been treated appropriately, the disease can progress-sometimes within a month, sometimes not for a year or more-to late-stage dissemination, when damage to multiple body systems can occur. This damage potentially includes chronic or relapsing problems of the skin, joints, muscles, eyes, heart, and neurological system. Less often, some combination of liver, lung, bladder, spleen, and gastrointestinal ailments is also present. By the time these more severe symptoms appear, the disease can be securely lodged in the body, difficult to diagnose, and much harder to treat. Later symptoms also imitate other illnesses and can easily be misdiagnosed.
While Dr. Burgdorfer's discovery in 1981 of Bb as the cause of Lyme disease was a major step forward, many unknowns remain. Most people have a difficult time getting an initial diagnosis, in part because of the substantial disagreement about what, exactly, comprises a case of Lyme disease. Only in 1990 did the CDC establish a uniform definition, and it was intended to be used for reporting purposes only. Unfortunately, many physicians have misused it as a diagnostic tool. It is sometimes the deciding factor for insurance reimbursement, physician harassment, litigation, and laboratory reporting criteria as well. The problem with the CDC definition is that it is based solely on a few of the wide range of physical signs that a physician can see and measure, and completely excludes all symptoms reported by the patient, such as pain, fatigue, or confusion.
According to the CDC's official definition (see appendix II), a patient displaying the characteristic EM rash can definitively be considered to have Lyme disease. Also, patients may be considered to have Lyme disease if they have at least one from a list of signs affecting the musculoskeletal, nervous, or cardiovascular systems, and if a laboratory is able to isolate the Bb spirochete, or detect a high level of antibodies to it, in a sample of blood or spinal fluid. Antibodies are the proteins produced by your immune system to fight off foreign substances such as toxins or infectious agents. While this narrow definition creates a research standard, it has been proven to exclude many people who actually have the disease.
Why Lyme disease causes such a range of responses in those it strikes is also a mystery. How sick a person becomes may depend partly on exactly what infectious agents were injected into his or her body by the tick. Several researchers have recently shown that one tick can transmit several different strains of Bb at once. For example, in a study of ticks on Shelter Island, New York, published in the Journal of Clinical Microbiology, D. Guttman showed that 60% of the black-legged ticks studied were infected with more than one strain of Bb. Researchers in Belgium and Paris have also detected multiple strains of bacteria in either ticks or the individuals they bit. Ticks may also transmit more than one disease-causing infectious agent, known as a pathogen, with a cumulative effect that can be devastating. In the state of Connecticut, as many as 20% of all patients diagnosed with Lyme disease have also been diagnosed with at least one other tick-borne disease.
Some individuals who appear symptom-free may actually have a low level of Bb lingering in their bodies. There is no sure way to know whether or when a dormant infection will become active again. Other individuals truly are bacteria-free, but their concern about a relapse may tempt them to try potentially dangerous, expensive, and unnecessary treatments. Because existing laboratory tests cannot prove whether infection continues to linger in the body or is completely eliminated, it is impossible to say with assurance whether or not someone is completely cured. As a result, many patients remain in limbo, ever watchful for a new symptom that could strike at any time.
And finally, an increasing number of people who contract Lyme disease appear to have persisting infection. Chronic symptoms may linger or recur for months or years, and permanent damage can occur.
Despite the wealth of scientific information to the contrary, some academic researchers and the media are still sending a message that Lyme disease is always easy to cure. As a result, some people do not feel the need to take proper precautions against tick bites. Sadly, I am afraid it will take many more infections and a swelling population with long-term medical problems before an accurate message about the real dangers of disease-and the importance of prevention-gets widely circulated.
The CDC has accepted approximately 200,000 confirmed reports of Lyme disease since 1980. Almost half of those cases were reported in the last five years. However, most of us working on the front lines of the epidemic believe this to be an enormous undercount. In our actuarial research, we were able to determine that only about 10% of qualifying cases are ever reported to the CDC. Adjusting the CDC figures pushes the case count to 2 million. Even that figure may be low. In 1996, the Connecticut Department of Public Health conducted a telephone survey that showed actual Lyme disease cases to be 13 times the number that was being reported. Reliable data about other tick-borne disorders are even sketchier.
There are many reasons why the CDC's numbers are so low.
Excerpted from EVERYTHING YOU NEED TO KNOW ABOUT LYME DISEASE AND OTHER TICK-BORNE DISORDERS by Karen Vanderhoof-Forschner Copyright © 2003 by Karen Vanderhoof-Forschner. Excerpted by permission.
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Preface: My Struggle with Lyme Disease.
A Public Health Threat Emerges.
Understanding Ticks and the Infections They Spread.
The History of Lyme Disease.
Signs and Symptoms of Lyme Disease.
The Quest for a Diagnosis.
The Treatment of Lyme Disease.
Other Tick-Borne Disorders.
How to Remove a Tick.
Personal Protection for You and Your Family.
Managing Your Property.
The Promise of Vaccines.
The Risks to Your Animals.
Appendix I: Time Line: The History of Lyme Disease.
Appendix II: Official CDC Disease Definitions.
Appendix III: Resources of the Lyme Disease Foundation.
Appendix IV: Tick Bytes in Cyberspace.
Appendix V: School Trip Letter.
Appendix VI: Personalized Medical Log.