Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease

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CHAPTER ONE: THE HIDDEN EPIDEMIC

Someone in my office had Lyme disease and has recovered. I’ve heard that you can get quite sick with it. How do you know whether you have it and what should you do? I’ve seen quite a few ticks in my yard.

—AUDIENCE MEMBER AT A LOCAL GARDEN CLUB MEETING ON LYME DISEASE

Many people who get Lyme disease are given an antibiotic and then have no further concern about the disease; within a few weeks they can expect to be cured. Here’s what happened to Tom: He awoke one day feeling unusually tired. During the following days he felt mildly ill and occasionally somewhat lightheaded. He noticed a red area on his arm that he could not explain. Still not feeling well, he called his doctor, who asked if he could have been bitten by a tick. After learning that Tom had played golf the preceding weekend and searched for balls in long grass and brush, his doctor suspected Tom could have been exposed to Lyme disease and took no chances. He prescribed four weeks of an antibiotic and said, “Call if you’re still not feeling well.” At the end of the month, Tom had no more bouts of fatigue or further worries about the disease. There are no guarantees, but the information contained in this book helps assure that this will be the case for you.

Even with delayed medical help, most people will still recover from Lyme, but Lisa did not fare quite as well as Tom. She was bitten by a deer tick in a heavily infested area north of Boston. Her Lyme test, however, was negative, and she was not given an antibiotic. “Within a few weeks I had shooting pains in my legs and one of them swelled up. My primary care doctor sent me to an orthopedist, who says I have arthritis that will get worse. I may end up in a wheelchair. I’m only 35 years old, a single mother with two young children. How can I have suddenly come down with arthritis? How can this be?” She was in tears and already nearly unable to walk.

She contacted a second orthopedist, who supported the earlier opinion given that she had arthritis. She asked for another Lyme test, which also came back negative. The second doctor said the Lyme tests done at the hospital were very accurate, so she prepared for a life of invalidism. She resigned from her computer job and abandoned plans for an advanced degree. Since her mother lived in faraway Japan, Lisa contacted social agencies for help in caring for herself and her children and looked into her eligibility for disability payments. The future seemed to hold little except invalidism and pain. After several weeks of despair, she sought further information. By making more phone calls, she learned of a doctor with experience in treating Lyme disease. She waited for the appointment date to arrive and only then discovered that she did indeed have the infection. After three months of antibiotic treatment, she became well and remains healthy, but her story could have been very different.

Medical care for Lyme disease remains remarkably unavailable for those who are not treated promptly after the bite of an infected deer tick. This book tells you why and provides information that will help you avoid the risks that many take without knowing what they are. With facts in hand, it becomes possible to find help, whether to preserve or to recover your health after being bitten by a tick. We don’t yet have all the answers, but there are choices that allow you to decide on the degree of risk that you are willing to accept.

The story of Lyme disease and how it is diagnosed and treated is presented in this book. Here I’ll also delineate the controversy and politics that play the major role in denying its presence and obstructing treatment. My disease, for example, was not recognized, and I had the experience of thousands of others as I struggled to find medical care. I learned the nearly unbelievable politics that stood in the way of finding help. Although this is not a personal saga, at intervals I’ll describe what happened to me, how I coped, and the medical treatment that I was fortunate to receive.

EXPLODING NUMBERS OF TICKS AND LYME DISEASE

Lyme disease has become increasingly prevalent during the past few years, occurring very far from East Coast states where it was originally discovered. (See Figure 1-1.) It is the fastest-growing infectious disease in America, and some of its victims become either mildly or severely ill. In 1993, 8,257 new cases were reported. In the year 2000, 17,730 cases were reported. In 2005, there were 23,305 new cases reported, approximately three times as many as in 1991. The numbers climb, conservatively, at least 8 percent per year. In Europe approximately 60,000 cases are reported annually, and the numbers are increasing in Canada. There is Lyme disease in Great Britain, Sweden, Finland, and Asia. It has become a global disease.

No one knows how much Lyme disease there actually is because many cases are never recognized or aren’t diagnosed until months or years later. And many cases that are diagnosed are never reported to a state’s department of public health. Reporting depends on physician initiative, and physicians often don’t send information, especially if they’re unsure whether their patient has Lyme disease. It is inevitable that many cases are missed.

When national reporting began in 1982, there were 497 cases reported. In 1992 it was mandated. The data collection policy is determined by state laws or regulations, which may differ in each state. Information is received from licensed health care providers, local health departments, diagnostic laboratories, or hospitals. This data from states and the District of Columbia is shared with the Centers for Disease Control (CDC). Because of recent budget cuts, Connecticut laboratories, for example, are no longer required to report Lyme disease.

The actual figure is estimated by all sources, including the government, to be at least ten times the recorded numbers. With this number in mind, 230,000 Americans may have contracted Lyme disease, and some experts estimate that as many as 1.7 million may be infected with Lyme bacteria. At a legislative hearing in Albany, New York, on November 27, 2001, it was estimated that at least 10,000 people in New York were living with chronic Lyme disease.

Lyme disease is no longer confined to Cape Cod, Connecticut, the northeastern and mid-Atlantic states, and the Great Lakes region. For a variety of reasons, which include more people moving into forested areas, climate warming, and increasing numbers of deer and deer ticks, it has spread across the United States and is found in nearly every continental state. It is a recognized problem in Virginia, the Carolinas, Georgia, and Missouri. It is prevalent in the state of Washington and in several parts of California, and has become an increasing problem in Maine, Vermont, and New Hampshire. You cannot be assured of safety from Lyme even in urban areas, including New York City parks. States reporting the most cases are Connecticut, New York, Pennsylvania, Rhode ¬ Island, and Wisconsin. Most of these are reported in the late summer, but the disease is reported in every month of the year. (See Figure 1-2.) If you are visiting or traveling in any state and take a walk in fields, brush, or woods, you are at risk of encountering a disease-carrying tick.

The risk to the public increases as more deer ticks become infected, making every tick bite of greater concern. In 2000 researchers at the Portland, Maine, Lyme Disease Research Laboratory found that the infection rate of ticks was about 30 percent. Four years later, out of every hundred ticks collected at Crescent Beach Park, fifty-five were infected with Lyme disease. Infection rates at Cape Elizabeth, Kittery, and Wells are now greater than 50 percent. As many as a third, and, in many cases, far more of the ticks in New York, Massachusetts, Connecticut, Delaware, Rhode Island, and New Jersey are infected with Lyme. The risk of West Nile virus or pandemic flu can’t compare with the current risk of Lyme. If this illness were associated in any way with bioterrorism, the response would be very different.

The age groups most affected are children from 5 to 14 and adults over a wide range, beginning at age 30. More specifically, the CDC says that although people of all ages are susceptible to tick bite, Lyme disease is most common among boys 5 to 19 years old and people 30 and up. (See Figure 1-3.)

HOW SERIOUS IS LYME?

The disease can be incredibly easy to acquire, and the ticks that transmit it are just as likely to be found in suburban yards as they are in woods and fields, or among coastal bushes and beach grass. With the possible exception of being transmitted through pregnancy, Lyme is acquired only from a bite from an infected tick. Many cases of the disease are so mild, as one woman says, “It could be Lyme disease but I can live with it.” In most cases it is cured within a few weeks, even when symptoms have developed beyond the early rash and bacteria have spread to the brain, causing fatigue, dizziness, and malaise.

Even people who remain undiagnosed for months, or years, can recover. When they are given adequate treatment, many return to work and normal lives. Every case is different, and we don’t yet have all the answers, but we do know that even late-stage disabling Lyme disease responds to antibiotic treatment. The information provided here will help you avoid serious illness, which has affected thousands who were bitten by an infected tick.

My story is typical of many whose Lyme disease is not recognized early and treated adequately. What happened to me continues to happen to others. I became ill in May 1993 and was not diagnosed until December of that year, a time period far shorter than that for most who acquire serious disease. If I had known then what I learned later, I might have found treatment sooner. I read books that told me about ticks but gave no answers to my dilemma. I was trying to get diagnosed; I knew it had to be Lyme disease, every other illness was ruled out. I didn’t know why I wasn’t treated or what the treatment should be. I had no idea one could get so sick with Lyme and why the doctors didn’t know what I had. As yet, I didn’t know about the controversy that gets in the way of doctors’ diagnosing the disease. Though Lyme disease was identified in 1975, information on untreated Lyme remains largely unavailable, and the number of those with unrecognized disease continues to remain generally unknown to the public and to physicians.