LYME DISEASE

Lyme disease, which results from the bites of specific types of ticks, causes a skin rash in its early stage as well as infection in joints, nervous system and other organs in later stages. When diagnosed and treated early, symptoms usually resolve quickly. Individuals with later stages of infection are more likely to experience lingering symptoms such as fatigue, poor sleep, and muscle and joint pain.

+ What it is + Living with lyme disease
+ What causes it + Points to remember
+ Who gets it + The role of the rheumatologist
+ How it's diagnosed + To find a rheumatologist
+ How it's treated + For more information

Fast Facts

  • Lyme disease can be spread only via the bite of a tick

  • Awareness of the early signs of Lyme disease and prompt treatment when it does occur will dramatically curtail the severity and duration of symptoms.

  • The risk of Lyme disease is greatly reduced by avoiding tick habitats at specific times of the year, coupled with regular tick checks and prompt removal of any tick found

What lyme disease is

The erythema migrans rash starts as a small red mark and, over subsequent days, gradually enlarges in diameter to at least two inches and sometimes as large as 10 or more inches.

Lyme disease is an infection caused by Borrelia burgdorferi which belongs to the spirochete family of bacteria. This bacterium lives inside certain ticks (the deer tick in the Northeast and Upper Midwest) and can be spread to humans by the bite of an infected tick.

In its early localized stage, Lyme disease consists of a skin rash, called erythema migrans, that appears at the tick bite site from three days to several weeks later. This rash, starts as a small red mark and, over subsequent days, gradually enlarges in diameter to at least two inches and sometimes as large as 10 or more inches.

If the rash goes unnoticed and untreated, or does not occur (as is the case approximately 10-25 percent of the time), the bacterium may spread through the bloodstream to the rest of the body initiating an early disseminated stage of infection which occurs in the weeks following the tick bite. At this point, the infected person may develop an array of signs and symptoms including multiple skin rashes, fever, joint pain, muscle pain, and headaches. Infection in about five percent of individuals will involve the heart, causing a temporary blockage of the normal heart rhythm. In approximately 20 percent of cases, the infection will affect the nervous system resulting in severe headache and stiff neck, paralysis of the muscles of the face or painful inflammation of nerves. Still other individuals will have no symptoms at all.

If Lyme disease goes unrecognized or untreated with the appropriate antibiotic course, late stage infection may occur months to even years after the onset of infection, and can affect the joints or nervous system.

Lyme arthritis (late stage) causes swelling of one or both knees and, less often, can affect other, predominantly large, joints of the body. Late infection of the nervous system may also occur, however, the clinical manifestations and treatment have been less well defined and agreed upon. Peripheral nerves may be affected, leading to numbness or tingling or less often weakness. Infection of the brain may lead to difficulty with sleep pattern, memory and concentration.

What causes lyme disease

Lyme disease is caused by the transmission of Borrelia burgdorferi bacteria living inside of infected ticks. These ticks can be so small (the size of a poppy seed) as to go unnoticed, feeding at the site of attachment to the skin for several days before dislodging. The Lyme bacteria, which resides in the tick gut, travels to the mouthpart and is injected into the skin.

In the United States, Lyme disease is endemic in most of the Northeast, the upper Midwest and, to a lesser degree, in California and the Pacific Northwest region. The illness is named after the town of Old Lyme, Connecticut where the first cases of Lyme disease were recognized in 1975.

Other tick-borne infections may resemble a “rashless” Lyme disease, and may even occur together with lyme disease (coinfection). These also require prompt medical attention for proper diagnosis and treatment.

Who gets Lyme disease

People most at risk for Lyme disease are those who live or spend leisure time in areas with a high density of infected ticks. In the Northeast and Upper Midwest regions, there is a sharp peak of infection in the late spring and early summer months when the tiny nymphal form of the tick is feeding. A second smaller peak of Lyme disease occurs in the fall when the adult tick feeds. In comparison, the risk of tick bites are lower during the late summer after the nymphal ticks have all become inactive and molted, and in the winter when cold and snowfall render the adult ticks temporarily dormant.

How Lyme disease is diagnosed

To optimize diagnostic accuracy, the Centers for Disease Control has recommended a two-step approach that uses an ELISA blood test to look for evidence of particular antibodies in the immune system's response to the infection followed by a second test (Western blot) to confirm a borderline or positive results.

In certain circumstances, a person who does not have Lyme disease may have a false positive on a blood test or someone who has Lyme disease may register a false negative (this occurs commonly in the early weeks of the infection or more rarely later). Therefore, lab testing should be used only when patients show possible symptoms of the disease.

How Lyme disease is treated

In the majority of cases, early stage Lyme disease is treated successfully with two-three week courses of oral antibiotics. Early infection involving the nervous system or heart may require intravenous antibiotics.

Even when the infection is detected after significant delay or at its later stages, antibiotic treatment is still successful in most patients. However, some patients will have lingering symptoms following treatment. General measures of good health such as exercise, good nutrition, and recognition and treatment of any emotional problems that may coexist or develop as a result of prolonged illness also are important adjuncts to treatment.

Living with Lyme disease/broader health impacts

Physician follow-up is also strongly recommended in the treatment of Lyme disease.

When Lyme disease is diagnosed and treated early, the symptoms most often resolve quickly. Individuals with early stage Lyme disease who remain undiagnosed for extended periods of weeks to months or those who have late stage infection of the nervous system are more likely to have a variety of lingering symptoms such as fatigue, poor sleep, and muscle and joint pain even after treatment.

In these cases, proper rest and pacing of activities, and adjustment of schedule and expectations, followed by a gradual return to normal activity level is advised. Physician follow-up is also strongly recommended.

Further treatment with antibiotics should be reserved for the rare case in which ongoing active infection is demonstrated.

Prevention

Ticks do not jump and must brush onto an individual after direct contact. Ticks also are susceptible to drying out and prefer sheltered environments. Vaccination is not presently available against Lyme disease. Therefore the risk of Lyme disease can be significantly reduced by taking appropriate precautions:

•  Avoid habitats such as tall grass, leaf-covered ground, and brush.

•  Stick to open pathways, cut grass or sand environments which carry a much lower risk of tick exposure.

•  Wear light colored clothing for early detection of ticks and tuck the hems of long pants into socks when feasible to block skin access.

•  Conduct tick checks regularly, particularly in tick habitats.

If a tick is found, removing it with a fine-tipped tweezers within 24-36 hours of tick attachment usually will prevent disease transmission. If a tick is found and the duration of attachment is likely to be greater than 24-36 hours or is unknown, it is advised that you consult with your physician.

Points to Remember

  • Blood tests may be negative in the first weeks of infection. Therefore early stage Lyme disease should be diagnosed and treated based on an individual's exposure risk and the presence of typical signs of symptoms.

  • Other tick-borne infections may resemble a “rashless” Lyme disease. These also require prompt medical attention for proper diagnosis and treatment.

  • Vaccination is not presently available against Lyme disease.

To find a rheumatologist

For more information about rheumatologists, click here.

For a listing of rheumatologists in your area, click here.

For more information

The American College of Rheumatology has compiled this list to give you a starting point for your own additional research. The ACR does not endorse or maintain these Web sites, and is not responsible for any information or claims provided on them. It is always best to talk with your rheumatologist for more information and before making any decisions about your care.

The American Lyme Disease Foundation has an informative website about Lyme disease and other tick-borne infections at www.aldf.com or can be reached by calling 800-876-LYME.

Updated May 2005

By Robert Kalish, MD, and reviewed by the American College of Rheumatology.