The Everything Guide To Lyme Disease: From Symptoms to Treatments, All You Need to Manage the Physical and Psychological Effects of Lyme Disease

Introduction

Fifty years ago, there was no such thing as Lyme disease. The disease that we now call Lyme disease was a rare illness that had not yet been properly characterized. Since its discovery, Lyme disease has gone on to become one of the most frequently occurring infectious diseases in the United States. Current estimates indicate that approximately 300,000 Americans are diagnosed with Lyme disease each year, indicating a tremendous public health problem. It can be a difficult disease to face, filled with a wide variety of symptoms. In addition, many patients complain of persistent symptoms long after the disease is believed to be cured, which can have a profound effect on their lives.

Despite the vast amount of progress that has been made in learning about Lyme disease, there is still a great deal of mystery and confusion surrounding it. If you are reading this book, chances are you have either been personally affected by Lyme disease or you are worried about how it could affect you if you were to acquire it. Perhaps you have seen it in the news recently and are seeking explanations for why there seems to be so much controversy and misunderstanding about this disease.

If you search for answers about Lyme disease on the Internet, you can find many websites that will explain how it is transmitted and diagnosed, what the symptoms are, and what you can expect if you get infected. Some of what you find may even be accurate. Unfortunately, you will also find a great deal of misinformation. In fact, some people within the Lyme disease community can’t agree on things such as what Lyme disease actually is, what the symptoms are, and how to treat it.

This book is a comprehensive resource for Lyme disease. It will familiarize you with all the different aspects of Lyme disease and provide you with the answers to a number of pressing questions that you may have about this illness. It will also help you sort through the different opinions about what this disease really is. By examining the history of Lyme disease, you will become aware of the factors that have led to the incredible expansion of this illness over the past few decades. This book will guide you through the various phases of the disease and the concerns regarding diagnosis and treatment. And, of course, you will learn a lot about ticks and how they contribute to the overall problem of not just Lyme disease, but other diseases as well. Just as important, you will also learn how to avoid ticks, and what to do if you are bitten. By the time you reach the end of this book, you will have a solid understanding of what this disease is and how to prevent it.

CHAPTER 1

What Is Lyme Disease?

If you have been diagnosed with Lyme disease, you are certainly not alone. In the United States, hundreds of thousands of people contract this disease every year. Even if you’ve never had it, you may have heard stories about how Lyme disease can be a severe and debilitating disease. Unfortunately, it can also be very misunderstood. Because of how common it is in some parts of the United States, an incomplete understanding of the symptoms, and confusion about how it is diagnosed, Lyme disease has become a controversial topic that has occasionally led to a lack of trust between patients, doctors, and the scientific community. To better understand this disease, it is important to know what Lyme disease is and what it isn’t.

History and Expansion of Lyme Disease

Many people consider Lyme disease a relatively new disease. In some ways it is, and in some ways it isn’t. A more appropriate term would be to call it an emerging disease, one that has increased in frequency in recent years. It’s new in that fifty years ago there was no such thing as Lyme disease because it hadn’t yet been classified as a distinct disease. This does not mean that it didn’t exist before then or that people hadn’t been contracting the disease, because it did and they had. In fact, scientific journals published reports of an illness that was likely Lyme disease during the first half of the twentieth century, long before it was first characterized as a distinct disease. However, the first characterization of Lyme disease occurred just a little over forty years ago.

Fact

Lyme disease is known as an infectious disease. Unlike diseases such as autoimmune diseases or most cancers that are usually caused by some sort of genetic abnormality, infectious diseases are caused directly by outside agents such as viruses, bacteria, or fungi, which are called pathogens—microbes that cause disease.

Discovery of Lyme Disease

The word Lyme in Lyme disease comes from the name of a town in Connecticut where the disease was first comprehensively studied. The very first detailed investigation of this disease started in November of 1975 when two mothers from the small town of Old Lyme, Connecticut, each independently alerted state and local health officials of a mysterious outbreak of arthritis in the town. One mother notified the state officials that twelve children out of the community of five thousand were diagnosed with a disease called juvenile rheumatoid arthritis.

Four of these children lived close together, on the same road. The second mother told the local health authorities that she, her husband, two of their children, and several of their neighbors all had arthritis as well. This alarmed the state health authorities because juvenile rheumatoid arthritis is random, meaning that many people coming down with the disease in so small a town was highly unusual. These alerts led to researchers setting up a surveillance program in Old Lyme, as well as in two surrounding towns—Lyme and East Haddam—in order to study this illness and possibly identify other people infected with the disease.

Between December of 1975 and May of 1976, a study led by doctors Allen Steere and Stephen Malawista identified fifty-one residents out of a total community population of twelve thousand that were affected with a similar illness, thirty-nine of whom were children. While talking to the patients, the doctors learned that all but one began to experience the symptoms after July 1972 and most often in the summer months. Their symptoms always began with sudden swelling and pain, usually in the knees.

Question

What is juvenile rheumatoid arthritis?

Juvenile rheumatoid arthritis, also called juvenile idiopathic arthritis, is the most common cause of arthritis in children. It is an autoimmune disease, meaning the person’s own immune system attacks some part of the body. The cause (or causes) is currently unknown.

Although the first attack usually went away within a week, the arthritis often came back several times after that, and many of the patients also reported having typical symptoms of the flu, such as fever, muscle pain, and general tiredness. About one quarter of the patients said they had an odd expanding rash. The center and outer edge were red, but the middle was clear, making it appear like a bull’s-eye. This rash generally appeared about one month before the beginning of the arthritis. Interestingly, Drs. Steere and Malawista thought the description of the rash was similar to one first described in Europe in the early 1900s that was believed to be caused by tick bites. Both the physicians and the patients thought the rash was a result of an insect bite, but only one person recalled being bitten by a tick at the site of the rash.

This mysterious illness also appeared to have a particular geographic pattern. The area around these three towns was surrounded by woods, where deer, and the ticks that fed on them, were common. The patients experiencing this mysterious arthritic illness all lived near one another on large wooded lots or farms, where they presumably could come in contact with ticks. Of the thirty-nine affected children, seventeen lived on country roads.

In early 1977, the findings of the study were published and were the first to describe a new illness that was characterized by recurring attacks of arthritis. The illness was initially called Lyme arthritis, before being slightly modified to Lyme disease. In a follow-up to their initial study, Drs. Steere and Malawista identified thirty-two new patients in the summer of 1976 who all appeared to suffer from Lyme arthritis. This study helped define a lot of the symptoms we now associate with Lyme disease. Unlike the last study, this time most patients had a bull’s-eye rash prior to symptoms, confirming that the appearance of the rash and the disease were linked. Three patients remembered being bitten by a tick at the site of the rash prior to its appearance, four patients had evidence of neurologic disease, and two more had problems with their heart, revealing that this illness was not limited to the skin and arthritis but affected other parts of the body as well. In addition, eight of the new patients came from outside of Connecticut, meaning the disease was found outside of the Lyme area. Within two years, a similar disease was reported in Wisconsin and as far away as the Pacific Coast and Europe.

By 1980, scientists learned that Lyme disease could be successfully treated with antibiotics, which then became the standard method of treatment. The actual cause of Lyme disease, and the fact that it was transmitted by ticks, remained a mystery until 1982, when it was finally identified by a group of scientists led by Dr. Willy Burgdorfer. As so often happens in science, it was identified by accident. Dr. Burgdorfer and his colleague Dr. Jorge Benach were studying a tick-borne disease called Rocky Mountain spotted fever. Although the pathogen causing this illness was known to be transmitted by ticks called American dog ticks, they wanted to see if other ticks could transmit this pathogen as well. The group collected blacklegged ticks (frequently also called deer ticks) on Shelter Island, New York, and used a microscope to analyze the microorganisms that lived inside the ticks.

Although they didn’t find the agent of Rocky Mountain spotted fever, they found something else they thought was interesting. They discovered that more than half of the ticks contained unique, spiral-shaped bacteria. The scientists tested the blood of patients with Lyme disease and found that at some time in the past, they all had previously been infected with this bacteria. A year later, the same bacteria was found in the blood, cerebrospinal fluid, and skin of Lyme disease patients. These studies conclusively showed that this previously unknown bacteria, subsequently named Borrelia burgdorferi in Dr. Burgdorfer’s honor, was indeed the cause of Lyme disease and that tick bites were the most likely way people were being infected.

Essential

Growing bacteria in a laboratory does not mean increasing its size. It means creating an environment where the bacteria are able to continuously divide on their own, away from their host.

Along with the discovery of the bacteria by Dr. Burgdorfer, another major breakthrough in studies of Lyme disease also occurred in 1982, when scientists led by Dr. Alan Barbour grew cultures of the bacteria in a laboratory for the first time. Although the bacteria was difficult to grow at first, scientists were able to figure out the right mix of different nutrients that allowed it to grow on its own. By identifying a method for studying Borrelia burgdorferi away from ticks or animal hosts, scientists all over the world could now study this bacteria like never before.

Early Cases of Lyme Disease

Contrary to its name, Lyme disease did not originate in Lyme. Lyme and the adjoining towns just happened to be where the disease was first recognized. By the time Drs. Steere and Malawista began their study in 1975, the disease had been occurring in many different regions of the United States but was not being recognized as a distinct illness. After its discovery by Drs. Steere and Malawista, it became clear that Lyme disease was not a new disease at all but went back nearly one hundred years prior to its discovery. In the early twentieth century there were many cases of this illness reported by doctors examining patients in Europe, although at the time it was obviously not yet known to be Lyme disease.

The first instance of someone with what was likely Lyme disease can be traced all the way back to 1883 in Germany, and doctors first learned of the rash (and its connection to tick bites) in 1909 in Sweden. This led to the rash being reported by physicians throughout Europe, usually linked to some bite of a blood-sucking pest such as a tick. One strange difference is that there was never any mention of arthritis in these European cases. This was likely due to how Lyme disease manifests in Europe—the course of the disease can be quite different following the initial rash, and arthritis is relatively rare. Even in the United States, there were reports of patients with a similar rash in Wisconsin and elsewhere in Connecticut in the early 1970s, just prior to the initial Lyme study, without a link to arthritis. Linking the rash and all of the different ways Lyme disease can manifest gave this disease a distinct identity that doctors could better diagnose and treat.

Fact

Until Borrelia burgdorferi was clearly shown to be the cause of Lyme disease, there were many suggested causes of the rash, including tick-transmitted toxins, viruses, and other bacteria.

The Rise in Lyme Disease

At first, reports of Lyme disease were confined to a few states in the Northeast and around the Great Lakes, with just a few sporadic cases reported on the West Coast. As the 1980s progressed, the number of cases, and the number of states reporting them, began to grow. In 1982, the CDC began to informally track the disease, and finally, in 1991, Lyme disease became a nationally notifiable disease. This meant that each case was now required to be reported by the physician to the local health department, which would in turn be required to report it up the chain until the data was registered by the CDC. This allowed the CDC to keep better track of the number of cases each year, and by the mid-2000s, there were nearly 25,000 cases reported annually. Lyme disease was being reported all along the East Coast, from Maine down to Florida. It was also expanding west, with most states east of the Rocky Mountains now reporting the disease as well. Doctors in counties that had previously been thought to be free of Lyme disease were now seeing cases, and each year the numbers grew. Between 1993 and 2012, the number of counties with a high frequency of Lyme disease increased threefold, from 65 to 260. In the northeastern part of the country, Lyme disease became a major epidemic, with some states reporting up to 5,000 cases every year. In all, between 1982 and 2012, more than 350,000 cases of Lyme disease were reported by the CDC.

Essential

The Centers for Disease Control and Prevention (CDC) is the main national health institute in the United States. The agency’s main purpose is to protect public health through controlling and preventing diseases. The CDC tracks trends in infectious diseases and establishes guidelines for diagnosis and treatment.

As of 2017, Lyme disease was the seventh highest reportable disease in the United States. Anyone who gets bitten by the tick that carries Borrelia burgdorferi is at risk for Lyme disease. However, Lyme disease is most often diagnosed in children between the ages of five and fifteen and adults between the ages of forty-five and fifty-five. It is also slightly more common in men than women. In states where Lyme disease is common, children tend to be diagnosed more often, whereas in states where Lyme disease is less common, adults make up the majority of cases. Scientists are still not sure what causes this discrepancy or even if it’s real; it could be that adults in non-endemic states are simply misdiagnosed.

Fact

Reportable diseases are diseases where the CDC requires doctors to tell them about all cases they diagnose so they can track statistics and outbreaks. These are generally diseases where information is needed to help control the disease, such as measles, as opposed to common infectious diseases such as the cold or the flu.

The Cause of Lyme Disease Expansion

As we just learned, the disease that we now call Lyme disease has been here for a long time. So why did it emerge only in the past forty years? And why is it so common now? Although there probably is not a single answer to these questions, there are several possible reasons this disease has grown so much so quickly. The main reason most likely has to do with the geographic expansion of the ticks that transmit the disease. Ticks that transmit Lyme disease are more abundant than ever and can now be found in areas where they wouldn’t have been half a century ago. This expansion has been driven by a variety of human and environmental factors, some of which will be examined in Chapter 2.

Essential

The term endemic is used to describe something that is frequent. A state such as Connecticut, where high numbers of Lyme disease are diagnosed each year, would be referred to as a Lyme disease–endemic state, whereas Colorado might be considered a non-endemic state.

There has also been more attention paid to Lyme and other tick-borne diseases in recent years, particularly in regions where ticks are common. With more information about Lyme disease available to the public, people are more likely to recognize signs of this illness and seek a Lyme disease diagnosis and treatment.

Lyme Disease Reporting

Almost from the beginning, there was a widespread belief among patients and clinical doctors that Lyme disease cases were significantly underreported. Many people were convinced that the annual number of Lyme disease cases that was listed by the CDC represented just a small portion of the actual number of people who came down with the disease. Studies performed in the 1990s looked at the reporting of Lyme disease in specific states and showed that Lyme disease was underreported by anywhere from one third to one twelfth the correct amount. More recent studies revealed that underreporting on a national level is just as high. Although the average number of reported annual cases now stands at around thirty to thirty-five thousand, recent studies by the CDC show that the true number of cases in the United States is likely ten times higher.

How did the CDC finally realize the true extent of annual cases of Lyme disease, especially since only a fraction is actually reported? First, they looked at the numbers of Lyme disease tests performed by large commercial laboratories in the United States and determined how many, on average, were positive. Then they analyzed the nationwide number of health insurance claims for patients with a diagnosis of Lyme disease. Both studies produced similar results and showed that more than 300,000 cases of Lyme disease occur in the United States each year.

There are many reasons such a huge discrepancy exists between the number of cases of Lyme disease that are reported and the number of actual cases that occur, such as failure by physicians to report the diagnosis, incomplete or missing case reports, and failure to pass the report from one health department to the next. Whatever the reasons, one thing is certain: Lyme disease is much more prevalent than previously thought.

Borrelia burgdorferi: The Lyme Disease Bacteria

Borrelia burgdorferi (abbreviated to B. burgdorferi) is the official scientific name of the bacteria that causes almost every case of Lyme disease in the United States. It is a type of bacteria known as a spirochete, meaning it is spiral shaped, like a tiny corkscrew. Spirochetes are long and very thin and look like a strand of very curly hair. They can live in a wide variety of different environments, and Borrelia are not the only spirochetes that people come in contact with. There are several other spirochetes that can cause human disease. For example, the bacteria that cause syphilis and leptospirosis are also spirochetes and in fact look identical to B. burgdorferi. There are also many spirochetes that live in us that do not cause disease—some even live in our mouths.

Where is B. burgdorferi found?

Unlike the various types of common bacteria that live in the environment all around you, B. burgdorferi needs to live inside another host at all times—either a tick, an animal, or a human. This bacteria cannot survive in the outside environment, meaning B. burgdorferi cannot live on the floor, on your table, on your porch, or even in the soil in your backyard You cannot acquire it by touching an inanimate object, and it is not contagious, meaning