The Everything Guide To Lyme Disease

From Symptoms to Treatments, All You Need to Manage the Physical and Psychological Effects of Lyme Disease

Rafal Tokarz

• Publisher: Everything
• Year: 2018
• Print ISBN: 9781440577093
• eBook ISBN: 9781440577109
• Topic: Médecine
• Subtopic: Maladies et allergies

A comprehensive all-in-one guide to Lyme disease, including psychological as well as physical symptoms, along with traditional and alternative treatments.

Lyme disease is one of the most rapidly emerging infectious diseases in North America and Europe, transmitted to humans by the bite of an infected tick. Symptoms include the classic “bull’s eye” rash, fever, and headache, and current research indicates that 300,000 Americans are diagnosed with Lyme disease annually, ten times higher than previously reported. This indicates a tremendous health problem, heightened by the fact that Lyme disease can manifest not only in physical symptoms, but psychiatric illness such as cognitive dysfunction, memory deficit, and rage issues.

In The Everything Guide to Lyme Disease, you will find the most up-to-date and expert information on all aspects of the disease, including how to prevent it, find the best treatments, and deal with the psychological effects of Lyme disease.

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 ...

Table of contents

• Cover
• Introduction
• Chapter 1: What Is Lyme Disease?
• Chapter 2: Transmission and Prevention
• Chapter 3: Signs and Symptoms
• Chapter 4: Complications of Lyme Disease
• Chapter 5: Diagnosing Lyme Disease
• Chapter 6: Treatment for Lyme Disease
• Chapter 7: Lyme Disease Advocacy
• Chapter 8: Potential Coinfections
• Chapter 9: Research for the Future
• Appendix A: Further Resources
• Appendix B: Bibliography
• Appendix C: Infections Transmitted by Other Ticks
• Appendix D: Lyme Disease Timeline
• Appendix E: Glossary
• Acknowledgments
• About the Author
• Index
• Copyright