Margaret Dayhoff-Brannigan PhD & Amanda Bisnath, National Center for Health Research
Lyme disease is an infection caused by bacteria transmitted through the bite of a deer-tick. According to the Centers for Disease Control and Prevention (CDC), Lyme disease infects approximately 300,000 people in the United States each year. However, some experts believe that the number is much higher, since 30% of patients do not develop the bull’s-eye rash that is typical of the disease. People without a bulls-eye rash are often misdiagnosed, even if they have other symptoms of Lyme. As a result, it can take months or even years for these patients to be diagnosed with Lyme disease.
Part of the problem is a lack of accurate testing. Only 46% of people with Lyme test positive for the disease in its early stages. However, treatment is most effective within a few weeks of infection. Delayed treatment for Lyme disease can result in long-term, serious health problems that experts refer to as Post-Treatment Lyme Disease Syndrome (PTLDS). Chronic Lyme Disease is commonly used to describe patients with PTLDS. However, Chronic Lyme Disease is a controversial term since it is often used to describe a broad range of symptoms, even in patients who never tested positive for Lyme.
Common Signs and Symptoms
Symptoms of Lyme disease differ depending on when the initial tick bite occurred. In the early stages of infection (3 to 30 days after a tick bite), patients may experience the following symptoms:
- Bulls-eye rash (occurs in only 70%-80% of patients, typically 7 days after a bite)
- Swollen lymph nodes
Patients in later stages of infection (months after a tick bite) may experience different symptoms, including: 
- Severe headaches
- Neck stiffness
- Loss of muscle tone
- Arthritis, sever joint pain, or joint swelling
- Nerve Pain
- Numbness or tingling in the hands or feet
- Heart Palpitations
Diagnosis of Lyme disease typically involves a two-step laboratory test. The first test is called an enzyme-linked immunosorbent assay (ELISA) test, which detects the body’s immune system proteins called antibodies. A second test, the Western Blot, confirms the presence of the bacteria in the blood.
This two-step testing process is known to have high levels of false negatives, which means that the test does not always accurately diagnose patients who have the disease. As a result, doctors will often diagnose Lyme disease based on a patient’s symptoms and not always based on test results. The ELISA and Western Blot tests are most reliable a few weeks after patients are first infected, which can be too late to ensure a full recovery. Unfortunately, many insurance policies won’t pay for treatment without positive test results.
When caught early, Lyme disease can be treated with a several-week course of antibiotics. Physicians often prescribe the antibiotic doxycycline for Lyme patients. However, since the ELISA and Western Blot tests are not as accurate in early stages, many patients are not diagnosed early enough to benefit from standard antibiotic treatment. As a result, antibiotics do not always cure Lyme disease or prevent later health problems. Symptoms such as fatigue or joint pain may return months after the initial infection has been treated. Some doctors prescribe a long-term course of antibiotics to treat these symptoms, but since the effectiveness of that strategy hasn’t been confirmed scientifically, insurance companies may refuse to pay for this treatment.
Chronic Lyme Disease
Chronic Lyme Disease is a common term for Post-Treatment Lyme Disease Syndrome (PTLDS). When Lyme disease goes undiagnosed for longer periods of time, traditional courses of antibiotics might not be effective in eliminating symptoms. Scientists are unsure why symptoms such as headaches, debilitating joint pain, and severe fatigue persist following treatment. However, studies done in animals have suggested three potential reasons for persistent symptoms: (1) low levels of infectious bacteria can persist following initial treatment, (2) the bacteria can mutate into different antibiotic resistant forms, and (3) the bacteria can cause the immune system to overreact and attack the body rather than the bacteria.[4,10,11]
There is no known treatment for PTLDS. For patients who continue to have Lyme symptoms following initial treatment, some doctors may suggest a second, long-term course of antibiotics. However, studies have found that this treatment is less effective at treating PTLDS than waiting for one’s immune system to recover.[4,6] A 2020 study conducted on Lyme bacteria found that common herbs used in combination with antibiotic therapy can kill the bacteria and eliminate symptoms more effectively than antibiotics alone. However, patients with PTLDS often get better with time once their immune systems learn how to fully combat the disease. For this reason, physicians may use holistic therapies to strengthen patients’ immune systems.
There is controversy surrounding Chronic Lyme Disease since the term is used to describe a broad array of illnesses, even in individuals who never tested positive for Lyme disease. To prevent confusion, physicians and experts prefer the term PTLDS to describe patients with persistent Lyme disease symptoms following a positive test. Nevertheless, due to the controversy and lack of scientific knowledge surrounding PTLDS, some insurance companies may refuse to cover treatment for the disease.
Related Tick-Borne Infections
There are other diseases carried by ticks that can also infect humans, such as Babesiosis and Rocky Mountain Spotted Fever. Lyme disease patients are often infected with more than one of these related infections at the same time. If you suffer from Lyme disease on a long-term basis, it is important to talk to your doctor about the possibility that you also have one or more of these other infections.
There are many steps you can take to reduce your risk of Lyme disease. Lyme disease is often diagnosed in individuals who spend time outdoors, specifically in the Northeast from Virginia to Maine, or on the West coast. Ticks typically live in grassy or wooded areas. Covering your skin and wearing a hat in these areas can help prevent tick bites. Additionally, wearing clothing treated with permethrin or insect repellant can help deter ticks. Although most insect repellants are effective against ticks, use the EPA’s helpful tool to find a repellent that works best for you.
After spending time outside, be sure to check yourself and any loved ones thoroughly for ticks as soon as possible. Ticks can be found behind the ears, behind the knees, in the hair, and even inside the belly button. The chances of developing Lyme are highest if a tick is attached for at least 24-48 hours, so it is best to remove ticks within this time frame. The best way to avoid potential harm from Lyme disease is prevention.
A study conducted in 2014 suggested that Lyme disease can be transmitted through sexual contact. However, more recent, better designed research indicates that Lyme disease cannot be transmitted sexually.  Instead, Lyme disease can be transmitted through the blood of a person with an active infection (before antibiotic treatment). While there have been no confirmed cases of Lyme spreading via blood transfusions, patients should refrain from donating blood while they are being treated for the disease. There are no reported cases of Lyme disease spreading through breast milk. However, pregnant mothers with Lyme disease can transfer the infection to their unborn children. Fortunately, with proper prenatal antibiotic treatment, fetuses are likely to be unaffected by the disease.
More information about signs and symptoms of Lyme disease can be found here. Contact your doctor immediately if you have been bitten by a tick or are experiencing symptoms of Lyme disease.
All articles are reviewed and approved by Dr. Diana Zuckerman and other senior staff.
The National Center for Health Research is a nonprofit, nonpartisan research, education, and advocacy organization that analyzes and explains the latest medical research and speaks out on policies and programs. We do not accept funding from pharmaceutical companies or medical device manufacturers. Find out how you can support us here.
- Centers for Disease Control and Prevention. Lyme Disease Data and Surveillance.CDC.gov.https://www.cdc.gov/lyme/datasurveillance/index.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Flyme%2Fstats%2Findex.html.Updated November 22, 2019.
- Centers for Disease Control and Prevention. Signs and Symptoms of Untreated Lyme Disease. CDC.gov. https://www.cdc.gov/lyme/signs_symptoms/index.html. Updated April 13, 2020
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- National Institutes of Allergy and Infectious Disease. Chronic Lyme Disease. Niaid.nih.gov. https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease. Updated November 21, 2018.
- National Institute of Allergy and Infectious Disease. Lyme Disease Diagnostic Research. Niaid.nih.gov. https://www.niaid.nih.gov/diseases-conditions/lyme-disease-diagnostics-research. Updated November 20, 2018.
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- J feng, T Li, R Yee, et. al. Stationary Phase Persister/Biofilm Microcolony of Borrelia burgdorferi Causes More Severe Disease in a Mouse Model of Lyme Arthritis: Implications for Understanding Persistence, Post-Treatment Lyme Disease Syndrome (PTLDS), and Treatment Failure. Discovery Medicine. 2019. 48. http://www.discoverymedicine.com/Jie-Feng/2019/03/persister-biofilm-microcolony-borrelia-burgdorferi-causes-severe-lyme-arthritis-in-mouse-model/
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- Centers for Disease Control and Prevention. Post-Treatment Lyme Disease Syndrome. CDC.gov. https://www.cdc.gov/lyme/postlds/index.html. Updated November 8, 2019.
- National Institute for Occupational Safety and Health. Overview of Tickborne Diseases. CDC.gov. https://www.cdc.gov/ticks/tickbornediseases/overview.html. Updated January 10, 2019.
- Centers for Disease Control and Prevention. Stop Ticks to Avoid Lyme and Other Tickborne Diseases. CDC.gov. https://www.cdc.gov/ncezid/dvbd/media/stopticks.html. Updated May 14, 2019.
- Middelveen M, Burke J, Sapi E, et al. Culture and identification of Borrelia spirochetes in human vaginal and seminal secretions. F1000Research. 2014. https://pubmed.ncbi.nlm.nih.gov/28690828/
- Centers for Disease Control and Prevention. Lyme Disease Frequently Asked Questions (FAQ). CDC.gov. https://www.cdc.gov/lyme/faq/index.html. Updated March 2, 2020.
- Centers for Disease Control and Prevention. Lyme Disease Transmission. CDC.gov.https://www.cdc.gov/lyme/transmission/index.html#:~:text=Untreated%20Lyme%20disease%20during%20pregnancy,risk%20of%20adverse%20birth%20outcomes. Updated January 29, 2020.
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