Myths and Facts: Lyme Disease

Lyme disease (LD) is a rare and mysterious disease, increasingly talked about by both physicians and patients. Dr. Robert Schoen, a rheumatologist and internist and a clinical professor of medicine at Yale University School of Medicine, says that all practicing physicians — both in areas of the country where LD is and isn’t highly endemic — are seeing patients who have questions about the disease. Indeed, he says, “We probably see more patients who have questions about the disease than who actually have Lyme disease.”¹

While manifestations of LD were first reported in the medical literature in Europe in 1883, it wasn’t until 1975 that LD was described following an outbreak of apparent juvenile arthritis, preceded by a rash, among residents of Lyme, Conn. Today, it is the most commonly reported vector-borne illness (an illness caused by an infectious microbe that is transmitted to people by bloodsucking arthropods) in the U.S.² LD is one of 1,200 diseases listed in the National Organization for Rare Disorder’s Rare Disease Report Abstract, and in 2009, it was the fifth most common infectious nationally notifiable disease.³ Since 1982, more than 150,000 cases have been reported to the Centers for Disease Control and Prevention (CDC).² But it is believed that far many more cases go unreported.

Unfortunately, many patients often believe they have LD when their symptoms are really something else. And, many physicians frequently fail to diagnose and misdiagnose LD. While LD has been directly responsible for fewer than two dozen deaths, if left untreated or inadequately treated, neurologic, cardiac or joint abnormalities may occur.² For these reasons, it’s extremely important for both patients and physicians to understand the facts about this disease.

Separating Myth from Fact

Myth: Any tick bite can cause LD.

Fact: LD bacteria are carried primarily by deer ticks, which are brown and often no bigger than the head of a pin, making them nearly impossible to detect. The LD spirochete (a long, spiral-shaped bacterial cell), Borrelia burgdorferi, infects other species of ticks, but it is known to be transmitted to humans and other animals only by deer ticks and the related Western black-legged tick. While deer ticks typically feed on the blood of mice, small birds and deer, they also can feed on the blood of humans, cats, dogs and horses.⁴

Myth: LD can be transmitted to humans only in certain parts of the U.S.

Fact: Regardless of where one lives, there are many opportunities for exposure to LD. This is because people travel, pets travel and ticks travel. However, LD is most prevalent in the EastCoast, Midwest and parts of the coasts of northernCalifornia and Oregon. In fact, LD is spreading slowly along and inland from the Upper East Coast, as well as in the Upper Midwest.² In 2010, 94 percent of LD cases were reported from 12 states: Connecticut, Delaware, Maine, Maryland, Massachusetts. Minnesota, New Jersey, New Hampshire, New York, Pennsylvania, Virginia and Wisconsin.³ Why the disease is spreading is unclear, but it is suspected to be due to factors such as bird migration, mobility of deer and other large mammals, and infected ticks dropping off of pets as people travel around the country.²

Myth: If a person is bitten by a deer tick, it is almost certain he or she will contract LD.

Fact: To contract LD, a person must be bitten by an infected deer tick, which is why the majority of people bitten by a deer tick won’t contract LD.⁶ The general risk of LD infection after a deer tick bite is 1 percent to 3 percent.⁴

Ticks attach themselves to a host and feed on the host’s blood until they’re swollen to many times their normal size. During feeding, infected ticks can transmit the bacteria to a healthy host. This happens when the bacteria enter the skin through the bite and eventually make their way to the bloodstream.⁵ However, to begin transmitting the spirochete, a tick has to be attached to its host approximately 36 to 48 hours. Generally, if a deer tick attached to the skin has not become engorged, it has not been there long enough to transmit the bacteria.²

Myth: LD can be transmitted through means other than being bitten by a tick.

Fact: It is believed by some that LD can be transmitted by blood transfusions, physical contact and breast milk. However, while the bacteria are capable of living in blood samples, people infected with LD are not allowed to donate blood. And, breast milk has never been found to sustain the bacteria. Indeed, there has never been a documented case of the LD bacteria being transmitted through breast milk or physical contact.⁴ Unfortunately, despite these facts, fear, ignorance and Internet rumors continue to expand on these myths. Postings on one newsgroup read: “I think Lyme is also a STD [sexually transmitted disease]” and “I’ve talked to many couples who claim they transmitted to each other through sexual contact. I believe I gave it to my wife.”⁶

Myth: The symptoms of LD are easy to detect.

Fact: The signs and symptoms of LD are variable and usually involve more than one system, most often the skin, joints and nervous system.⁵ However, early symptoms of LD can be mild and easily overlooked.

The first symptom is usually an expanding rash known as erythema migrans (EM), or bull’s-eye rash, which is believed to occur in 80 percent to 90 percent of all LD cases. An EM rash usually (but not always) radiates from the site of the tick bite, appears either as a solid red expanding rash or blotch or as a central spot surrounded by clean skin that is in turn ringed by an expanding red rash (that looks like a bull’s-eye), appears an average of one to two weeks after disease transmission, has an average diameter of 5 to 6 inches, persists for about three to five weeks, may or may not be warm to the touch and is usually not painful or itchy. An EM rash typically appears at the site of the tick bite, usually in areas where the body creases such as the armpit, groin, back of the knee and nape of the neck. However, the rash is not restricted to these areas. And, in brown-skinned or suntanned patients, an EM rash can be harder to identify because of the decreased contrast between normal skin tones and the red rash; instead, a dark, bruise-like appearance is more common.²

Other symptoms such as joint pain, chills, fever and fatigue will occur around the time the rash appears, although these symptoms may not seem serious enough to require medical attention. In addition, they may be brief, and as the LD spirochete continues spreading through the body, they may recur as a broader spectrum of symptoms as the disease progresses. A number of other symptoms also may develop, including severe fatigue and a stiff, achy neck, and the peripheral nervous system may become involved causing tingling or numbness in the extremities or facial palsy (paralysis). More severe and potentially debilitating symptoms of later-stage LD may occur weeks, months or, in a few cases, years after a tick bite. These include severe headaches, painful arthritis, swelling of joints, cardiac abnormalities and central nervous system involvement leading to cognitive (mental) disorders.²

Myth: Most patients diagnosed with LD recall being bitten by a tick and/or having a rash.

Fact: Fewer than 50 percent of patients with LD recall a tick bite, and in some studies of culture-proven infection with the Lyme spirochete, this number is as low as 15 percent.

Additionally, fewer than 50 percent of patients with LD recall any rash. This is because while EM is considered classic, it is not the common dermatologic manifestation of early localized Lyme infection. More common are atypical forms of the rash.⁷

Myth: Diagnosing LD is subjective and not based on serology (blood work).

Fact: In the first month after infection, blood tests are not reliable and often result in false results for diagnosing LD because antibody levels are too low. This is true even in the absence of an EM rash. Instead, physicians typically ask detailed questions about a patient’s medical history, perform a physical exam and diagnose on the basis of symptoms and evidence of a tick bite. However, as the disease progresses, blood tests are more reliable.^2,4

Myth: Screening tests for LD are always reliable.

Fact: Blood tests to confirm a diagnosis of LD can be reliable only after the disease has progressed and the body has developed antibodies. The CDC recommends the enzyme-linked immunosorbent assay (ELISA) and the Western blot tests. The ELISA test, which is used most often to detect LD, and the Western blot test detect antibodies to the LD bacteria. However, because they sometimes produce false-positive results, they are not used as the sole basis for a diagnosis, but instead are used to confirm a diagnosis.^2,5 According to the International Lyme and Associated Diseases Society (ILADS), the ELISA test misses 35 percent of culture-proven LD, when, by definition, a screening test should have at least 95 percent sensitivity.⁴

A third test, the polymerase chain reaction, helps to detect bacterial DNA in fluid drawn from an infected joint. It’s not as effective for detecting infection of blood or urine; instead, it is used for people who may have chronic Lyme arthritis, and it also may be used to detect persistent infection in the cerebrospinal fluid of people who have nervous system symptoms.⁵

Myth: If living or vacationing in an area prone to deer ticks, there is little one can do to prevent contracting LD.

Fact: There are many things individuals who are living or visiting in tick-infested areas can do to protect against LD. The first is to avoid contact with soil, leaf litter and vegetation as much as possible. Those spending time outdoors should learn how to identify what a deer tick looks like.² They should also wear long pants and sleeves, use insect repellents, check themselves afterward for ticks, and if a tick is found, they should know how to remove it with tweezers. In addition, those who live in tick-infested areas should tick-proof their yards by clearing brush and leaves where ticks live and keeping woodpiles in sunny areas. Last, people should never assume they are immune to LD. Even those who have previously been infected with LD can get it again.⁵

Myth: There is a vaccine to prevent LD.

Fact: In 1998, the U.S. Food and Drug Administration licensed the first vaccine for LD called Lymerix. The vaccine, intended for at-risk individuals between the ages of 15 and 70 years, was given in three separate injections, and it appeared to be effective in preventing infection. Unfortunately, after years of pre-license clinical trials and three years of commercial sales, GlaxoSmithKline pulled the vaccine off the market in 2002 citing poor sales and a projected low demand. There also were several lawsuits filed against the company by individuals who claimed the vaccine caused adverse events. However, repeated studies failed to find any evidence of specific adverse events associated with Lymerix.⁶

Myth: While LD can be treated, it is often difficult to cure.

Fact: The majority of LD patients recover completely. LD in its early stages (within the first few weeks after initial infection) is almost always cured when treated with oral antibiotics. Doxycycline, amoxicillin and ceftin are the three oral antibiotics most highly recommended. Those treated after the first three weeks also will likely fully recover, but the cure rate decreases the longer treatment is delayed. Unless neurological or severe cardiac abnormalities are present, oral antibiotics are still the recommended course of treatment. A study reported in the New England Journal of Medicine showed that a four-week course of oral doxycycline is just as effective in treating late LD, and much less expensive, than a similar course of intravenous Ceftriaxone.

Treating late-stage LD patients is more complicated and, in some cases, standard antibiotic treatment regimens are ineffective. In this small percentage of cases, intravenous antibiotic treatment may be indicated. And while the disease may persist for months or even years in these patients, they will eventually experience slow improvement and resolution of persisting symptoms.²

Myth: LD cannot be overtreated.

Fact: A small number of patients with LD continue to experience symptoms such as muscle aches and fatigue; however, the cause of these symptoms is unknown. It’s possible that certain LD patients become predisposed to develop an autoimmune response that contributes to their symptoms.⁵ And, while treatment of late-stage LD has become a matter of considerable debate, there is no scientific evidence to support the long-term use of antibiotics. Indeed, it is ill-advised due to adverse side effects.²

Myth: Lyme disease can be effectively treated by regimens other than antibiotics.

Fact: Antibiotics are the only appropriate treatment for LD. Unfortunately, some LD patients have been treated with inappropriate and ineffective regimens.These include malariotherapy, an injection of blood containing the malaria parasite, which is considered far more dangerous than the common case of LD; intracellular hyperthermia therapy in which a chemical such as 2,4-dinitrophenol (a metabolic poison that can result in severe weight loss and even death) is administered; hyperbaric oxygen therapy, an experimental treatment for some infectious diseases and one that is not recommended by the Infectious Diseases Society of America; colloidal silver, which has been touted as a cure for many diseases without any studies proving so; and rife machines, electromagnetic frequency devices from the 1930s that supposedly cure LD by matching the disease’s radio-like frequencies.⁶

In addition, some alternative medicine practitioners prescribe Bismacine, an injectable compound, which the FDA warns consumers and healthcare providers against. Bismacine, also known as Chromacine, contains high levels of the metal bismuth, and while it can be used safely in some oral medications for digestive conditions, it’s not approved for use in injectable form or as a treatment for LD. In fact, it can cause bismuth poisoning, which may lead to heart and kidney failure.⁵

Myth: The fetuses of pregnant women with LD are at increased risk for fetal malformation or adverse events during pregnancy if the mother is treated for the disease.

Fact: While many expectant mothers worry about the effects of treatment on the fetus, there have been no cases of treatment harming the fetus, and all cases of congenital LD clear shortly after birth. The reality is that mothers who refuse treatment put their children at higher risk of serious infection. There are documented cases of babies dying shortly after birth from the LD bacteria.⁴

Myth: LD patients can suffer long-term effects especially if undetected in its early stages.

Fact: It is rare for patients to suffer long-term effects. However, if LD is left untreated, it can cause chronic joint inflammation (Lyme arthritis), particularly of the knee; neurological symptoms such as facial palsy and neuropathy; cognitive defects such as impaired memory; and heart rhythm irregularities.⁵

Myth: LD is a chronic illness.

Fact: Individuals who do continue to experience chronic fatigue and muscle aches believe it is caused by LD that has turned into chronic LD. However, no bacterial infection has been found in these patients after the initial infection is eliminated, and chronic symptoms experienced after LD have never been proved to be related to LD.⁴

Dispelling the Myths Now

Scientists are continuing to conduct research to find new ways of preventing and treating LD. While there is no vaccine to prevent LD today, in the future, there may be vaccines that can provide immunity to not just the pathogen but also the vector (its salivary glands, for example). In addition, interesting new tests are being developed that are more sensitive at the beginning of the infection. But, in the long run, the healthcare profession is going to be limited by science as it is for a number of other infections. Therefore, it’s important to understand the clinical features of LD, as well as the myths and facts that abound.¹