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

Bean, Constance; Donta, Sam T

Softcover

ISBN 10: 081440944X ISBN 13: 9780814409442

Publisher: Amacom, 2008

Synopsis

More than thirty-years after it was first diagnosed, Lyme disease remains one of our most misunderstood—and pervasive illnesses. This often undetected disorder is increasing at an alarming rate and if not treated early, can cause debilitating symptoms. More than 1.7 million people in the United States, Europe, and China currently suffer from Lyme, yet they have often been unable to find the right treatment and care. Finally, Beating Lyme Disease sheds new light and offers those who struggle with it the guidance to get the help they need. A respected health author and educator, Constance Bean is an authority on this elusive illness. In 1993, she was diagnosed with Lyme and has spent the past fourteen years researching its various treatments and diagnoses.

Compassionate and thoroughly researched, this is the first book that will enable doctors and their patients to diagnose, treat and conquer this complex disease.

About this title

About the Author

Constance A. Bean (Boston, MA) is the former program coordinator at MIT and the author of five other books on health issues, including the classic Methods of Childbirth. She is an active participant in Massachusetts Public Health and is a support person for Lymsesite.com.

Sam T. Donata (Boston, MA), is Retired Professor of Molecular Medicine at Boston University and was Chief of Internal Medicine at Otis Air Force in Iowa.

Excerpt. © Reprinted by permission. All rights reserved.

Beating Lyme

Understanding and Treating This Complex and Often Misdiagnosed DiseaseBy Lesley Ann Fein Constance A. Bean

AMACOM Books

Copyright © 2008 Lesley Ann Fein and Constance A. Bean
All right reserved.
ISBN: 978-0-8144-0944-2

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.

My Experience in Getting Diagnosed

I lay in bed with a flulike illness, a pink rash spreading across the back of my hip. I didn't know it then, but the bite of a tiny insect, no bigger than a poppy seed, had changed my life. Several weeks earlier, while at my Cape Cod vacation home, I discovered a small deer tick burrowed into the back of my hip and firmly attached. With the help of a small magnifying glass I saw that it appeared to have legs and rushed to the nearby medical center to have it removed. Soon after the tick was removed, the skin around the bite became red, and I returned to the medical center the following day.

The physician suggested that the rash could be caused by an allergy to the Band-Aid, perhaps part of the tick remained under the skin, or it might be due to an infection. He said, "You must be allergic to something in the Band-Aid. It isn't Lyme disease." Though allergies to latex bandages are not uncommon, this didn't apply to me. I assured him I was allergic to absolutely nothing, certainly not to a bandage. He gave me, just as a precaution, in case I did have an infection of some kind, a two-week antibiotic prescription which I filled at the nearest pharmacy. I returned to my home near Boston, unsuspecting of the coming nightmare. I became part of the hidden epidemic, ignored by medical science, that leaves victims untreated. Even the fact that they are sick is often unrecognized. I had never before been ill and had no medical records anywhere. Soon it seemed that I had medical records almost everywhere.

At the end of two weeks, my face was flushed, and sometimes my souvenir Jamaican t-shirts were soaked with sweat. The rash continued to spread in all directions. I raced the hundred miles back to the medical center for a prescription refill, where I discovered that the protocol from Boston's New England Medical Center was two weeks of antibiotic treatment. Staff members said they could give no more.

I looked at the doctor and nurse, my eyes wide and questioning. Obviously, whatever my problem was, it hadn't resolved. My background is in public health, and I didn't know why my antibiotic was limited to two weeks. The staff was doing what it had been told. "We're following the protocol," explained the nurse. When it became clear that I wasn't leaving without explanation or prescription, I was given a two-week refill. If I had been even remotely exposed to anthrax, in a heartbeat I would have been given this same drug long term, not just for two weeks. Medical science has yet to recognize that Lyme disease is a complex disease that may require longer treatment and the use of a variety of antibiotics.

It would be a while before I discovered that the disease is controversial, and that other tick-borne diseases are also carried by the same tick that carries Lyme bacteria. Because I then, like most people even now, was ignorant of the controversy, I didn't know my risk of chronic disease, but common sense raised my concerns. Even though from the time the disease was identified, it was known that the bite of an infected deer tick could have serious arthritic and neurological consequences, the medical staff appeared puzzlingly unconcerned, despite the fact that Cape Cod has one of the highest rates of Lyme disease in the United States.

My Search for Help

My world began to close around me. I was not getting better. My neck ached all the time and I had a constant mild headache. My shoulder hurt, and sometimes I had minor muscle pains. I felt lightheaded. At my visit with a recently trained internist, I told him about my tick bite, showed him my slowly fading rash, and asked about Lyme disease. I reported that I had been on an antibiotic briefly, in case I had the disease. He said my problem was not Lyme disease and to get off the antibiotic immediately. "If you had the disease, it has already been cured with the antibiotic and you should get off the medicine right away. It could be causing your symptoms. Too much antibiotic can be harmful." This statement appeared irrelevant to my situation, but I followed his advice.

The physician ordered a shoulder X-ray and handed me samples of muscle relaxants from his desk drawer, suggesting that I might have a virus. "Come back for a physical exam, perhaps in six months, when you are feeling better." He didn't know the meaning of my symptoms or my test results. My blood tests, including the Lyme disease test, checked out normal. I asked for a repeat of the Lyme test, and again the result came back negative, as it often does for this disease. The internist and I seemingly had nowhere to go for either diagnosis or treatment. We didn't know that the usual blood tests are typically normal for those with Lyme disease, or that the Lyme test that is usually given is as problematical as the treatment. We didn't know about the disease that had progressed beyond early flulike symptoms and was rapidly disabling me.

This was my second experience facing the consequences of the Lyme disease controversy. I went home and back to bed, continuing to be puzzled by the treatment limitation and lack of acknowledgment of my illness, the tick bite cause of which seemed obvious to me. Only a little more than two months earlier I had been well while traveling with my husband in England.

I continued my search for help. One Sunday morning nine weeks after the tick had been removed I made the first of several trips to a hospital emergency room. I had a mild fever and felt an occasional curious threadlike pain in one knee. I told my story to the emergency room physician at the Metrowest Medical Center in Framingham and asked for an antibiotic. He sat with pen in hand, poised to write the prescription. However, when I mentioned I had already been given four weeks of antibiotics he put down his pen, somewhat reluctantly I thought, and said, "If this is Lyme disease, you've already had enough treatment." He suggested seeing an infectious disease expert. "We have a Lyme disease specialist on staff, but he's on a trip to Japan." I learned later that this doctor is among those who believe that Lyme disease is overdiagnosed and overtreated.

During ensuing months I saw at least three infectious disease specialists in the Boston area. All offered neither acknowledgment of my disease nor treatment for it. Mine is not a unique story, or one that happens only to a few. It is the norm for thousands whose disease is not recognized and treated early.

(Continues...)

Excerpted from Beating Lymeby Lesley Ann Fein Constance A. Bean Copyright © 2008 by Lesley Ann Fein and Constance A. Bean. Excerpted by permission.
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Edition details

• Publisher: Amacom
• Publication date: 2008
• Language: English
• ISBN 10: 081440944X
• ISBN 13: 9780814409442
• Binding: Paperback
• Number of pages: 224