Lyme Disease: A-to-Z Guide from Diagnosis to Treatment to Prevention

Lyme disease was first brought to medical attention in 1975, by two mothers living in Lyme, Connecticut who were concerned with an unexplained illness.

Even with our long history on this planet, new discoveries about microscopic neighbors continue to be made. In the 1970s, it was Legionnaire’s disease. In the 1980s, it was AIDS. In the 1990s, Hantavirus made the headlines.

The story of Lyme disease is particularly interesting for two reasons. One is that it illustrates the power of mothers to affect the health of their children, and two, it’s an excellent example of those many situations in our lives, which if attended to at an early stage, are very simple to remedy, but if allowed to take root and grow, become significant problems.

What is lyme disease?

Lyme disease was first brought to medical attention in 1975, when two mothers living in Lyme, Connecticut became frustrated by the lack of concern given to the unusual illness spreading through their community on the banks of the Connecticut River. These two women began to clamor for an investigation. One contacted the Connecticut State Health Department, and the other contacted physicians at Yale Medical Center. Their initiative set in motion a massive investigation, which in 1982 culminated in the discovery of the causative bacteria by Dr. Burgdorfer and colleagues. The bacteria was named Borrelia burgdorferi. At the outset of the investigation, it was noticed that the incidence of Lyme Disease was 30 times greater on the East Bank of the Connecticut River than on the Western Bank. Interviews with affected children and adults and their neighbors revealed that those who exhibited the illness were much more likely to have a cat, a farm animal, a pet with ticks, or a tick bite in the year preceding the illness. As a result, ticks were identified as a likely mechanism for infection. Then, in 1982, Dr. Burgdorfer found the bacteria on a type of deer tick.

Lyme disease is a tick-borne bacterial illness.

Who gets Lyme disease?

Lyme disease has been found in 49 of the 50 United States, every state except Hawaii. It is the most common disease caused by a bite in the United States.  It is primarily found on the eastern seaboard; in 2019 the states with the highest incidence rate of Lyme disease were Pennsylvania (over 6500 cases), New York, and New Jersey (both with close to 2500 cases).  

Lyme disease is also common in Europe (particularly in Scandinavian countries and in Central Europe — especially Germany, Austria, and Switzerland), but is found throughout the world, including in Australia where none of the ticks are known to exist. Humans are not the only ones susceptible to Lyme disease; dogs and horses also get it.

The bacteria live in deer and white-footed mice who do not develop the illness. When the appropriate tick feeds on one of these animals, it may become infected.

When an infected tick lands on someone, the bacteria are injected into the bloodstream through the saliva of the tick or deposited on the skin in tick feces. Thankfully, most ticks are not infected.

Even if someone is bitten by a nymphal stage deer tick that is infected, the risk of acquiring Lyme disease is only about 8 to 10 percent. It takes hours for the mouthparts of a tick to plant fully into the skin and much longer (days) for the tick to feed. Experiments have shown that it takes more than 36 hours of feeding before the risk becomes substantial.

What are the symptoms of Lyme disease?

The symptoms in Lyme Disease can be divided into three stages. In the first stage, a characteristic skin rash is the most prominent feature; in the second stage cardiac and neurologic findings predominate; and in the third stage, arthritis is the classic symptom.

The classic early manifestation of Lyme disease is a round rash called erythema migrans. The rash is common, occurring in 70-80% of those infected, and usually occurs at the site of the bite 7 to 14 days after the tick has bitten, though it has occurred as early as 3 days and as long as 32 days later. Without treatment, the rash gradually expands (hence the name migrans) to an average of 6 inches in diameter, but may be as large as 30 inches. As it grows it often takes on the “bulls-eye” or target appearance.  The rash remains present for at least one to two weeks and usually twice that. It often feels a bit warm to the touch, but is rarely painful or itchy.  At this stage, treatment is very simple with common antibiotics. The symptoms usually resolve within several days. People with the skin lesions may have no other symptoms, but may also feel fatigue, headache, stiff neck, joint aches and pains, and sometimes nausea, vomiting, and sore throat. There is often a low-grade fever, but it can be as high as 104 degrees F with chills.   It is important to distinguish this classic Lyme Disease rash from a common reactive rash that may happen within the first 24 hours of a tick bite.  A  small red bump which looks like a mosquito bite and is tender and goes away quickly is not Lyme Disease, instead this is a common reaction to the tick bite itself and does not need antibiotic treatment. 

Neurologic abnormalities occur roughly four weeks after the tick bite, but they can occur as early as two weeks after the bite and up to months or even years later with a wide spectrum of involvement. It may be something as mild as meningeal irritation and headache, but can be as severe as meningitis or encephalitis. Cardiac abnormalities occur in only about 1 out of every 100 cases reported to the CDC, averaging five weeks after the tick bite, and thankfully are relatively brief, lasting no longer than six weeks.  Lyme carditis does require oral, or in some cases intravenous, antibiotic treatment. 

The arthritis of the third stage usually begins five to six weeks after the bite, although it may occur as early as one week afterwards or as late as many months later. Large joints, often those closest to the initial rash, are most often affected. The most common joint affected is the knee, followed by the other large joints such as the shoulders, ankles, elbows, wrists, and hips.  Lyme arthritis in children has an excellent prognosis.  In a 2010 study done with 99 children, 75% had complete resolution of their arthritis with antibiotic treatment while the rest responded to other forms of treatment.  None developed chronic arthritis or joint deformities.  

Is Lyme disease contagious?

It is not spread from person to person, except by blood transfusions or blood exchange.

How long does Lyme disease last?

Lyme disease can last until treated and may become chronic if left untreated. Treatment often lasts for a number of weeks and includes antibiotics. 

How is Lyme disease diagnosed?

The diagnosis is suspected because of the clinical picture, including the rash and/or flu-like illness in the summer, often with history of a tick bite or potential exposure to ticks through pets or outdoor activities. The diagnosis is confirmed by blood tests, although false negative and false positive blood tests are common, especially early on in the course of the illness.  Blood tests (testing for antibiotics to the bacteria causing Lyme Disease) are most effective 2-6 weeks after the tick bite- as the immune system takes time to build up these antibodies.  Children with the classic erythema migrans rash are treated immediately with appropriate antibiotics against Lyme Disease.  

Should you try to save the tick? It’s a good idea to bring the tick to your pediatrician or the public health department for visual identification. The current recommendation, however, is not to have all ticks actually tested for the Lyme bacteria, since even if it is present there is at least a 90 percent chance that the bitten person would not have contracted the disease.

How is Lyme disease treated?

Treatment of early disease usually includes 10-14 days of appropriate antibiotics. The rash usually resolves in a few days. Treatment of late or complicated Lyme disease often requires IV or IM antibiotics for a longer period of time  The National Institute of Health has found that the large majority of patients treated quickly with antibiotics recover completely.  A small percentage may develop post-treatment Lyme Disease Syndrome, sometimes called chronic Lyme Disease.  This is a current area of study. 

How can Lyme disease be prevented?

Preventing prolonged tick bites is the best way to prevent Lyme disease. Children should wear long sleeves and long pants tucked into socks whenever outdoors in endemic areas. Using DEET is also recommended- this can be used on clothing to keep ticks away. Once you return from your outdoor adventures everyone should be inspected carefully (especially the scalp, groin, armpits, elbows, and behind the knees) when returning from tick-infested areas and the ticks should be removed promptly. Showering after outdoor activities is also protective against Lyme and is a great way to feel those little ticks on the body. Ticks may also be carried in the home on clothing and equipment.  Wash clothes on high heat for 10 minutes to kill the ticks.   Also- make it a habit to check your pets for ticks and remove them promptly as well. 

The CDC currently recommends single-dose doxycycline as Lyme Disease prophylaxis in certain circumstances.  A single dose of this antibiotic may lower the risk of Lyme Disease if a tick bite is sustained in areas where >20% of the ticks are infected with Borrelia burgdorferi, the attached tick can be identified as a blacklegged tick, the estimated attachment time is greater than 36 hours and the antibiotic dose can be given within 72 hours of tick removal and of course, if the patient does not have any contraindication to receiving the antibiotic. 

No vaccine is available to prevent Lyme disease. In 1998, the FDA had approved a vaccine for people 15-70 years of age, but iIt’s manufacturer removed it from the market in 2002.  However clinical trials are underway for development of new vaccines. 

Resources and References

Centers for Disease Control Lyme Disease

Chason ME, Monaghan M, Wang J, Cheng Y, DeBiasi RL. Symptom Resolution in Pediatric Patients With Lyme Disease. J Pediatric Infect Dis Soc. 2019 May 11;8(2):170-173.

Gomes-Solecki M, Arnaboldi PM, Backenson PB, et al. Protective Immunity and New Vaccines for Lyme Disease. Clin Infect Dis. 2020;70(8):1768-1773.

Tory HO, et al. Outcomes of children treated for Lyme arthritis: results of a large pediatric cohort. J Rheumatol. 2010 May;37(5):1049-55. 

Rebman AW, Aucott JN. Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease. Front Med (Lausanne). 2020;7:57.

Last medical review on: July 25, 2021
About the Author
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Dr. Greene is a practicing physician, author, national and international TEDx speaker, and global health advocate. He is a graduate of Princeton University and University of California San Francisco.
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