Frequently Asked Questions about Lyme Disease
By the International Lyme and Associated Diseases Education Foundation
ILADEF is devoted to training doctors and other medical professionals in the diagnosis and treatment of Lyme. ILADEF, and our sister organization ILADS, also believes that increasing the public's awareness of Lyme and its effects is one of the most important steps we can take to reducing the incidence of Lyme and other tick-borne diseases.
The information below is for educational purposes only. It is not intended to replace or supersede patient care by a healthcare provider. If you suspect the presence of a tick-borne illness, you should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases. Our provider search can help you find doctors in your area.
What is Lyme disease?
Lyme disease is a bacterial infection caused by a spiral-shaped bacterium (spirochete) called Borrelia burgdorferi. There are roughly two dozen species in the Borrelia burgdorferi sensu lato complex, not all are human pathogens. The worldwide distribution of the various species is not uniform. In the United States, almost all reported cases of Lyme disease appear to be the result of Borrelia burgdorferi sensu stricto (Bbss) infections. In Europe, 3 species - B. garinii, B. afzelii, and Bbss, are responsible for most cases of Lyme disease. The various species are further divided into strains and there are hundreds of strains worldwide.
In its early stages, Lyme disease commonly results in a rash, joint pain and headaches. Later-stage Lyme disease is characterized by arthritic pain, cognitive difficulties, fatigue and other symptoms that can have an enormous effect on a patient’s life. The Centers for Disease Control estimates that more than 300,000 new cases of Lyme disease occur each year in the US.
How can I get Lyme Disease?
Most commonly Lyme Disease is acquired from the bite of an infected black-legged tick. In the United States, two types of black-legged ticks, Ixodes scapularis in the Northeast and upper Midwest and Ixodes pacificus in the West, transmit Lyme disease, caused by Borrelia burgdorferi sensu stricto. Black-legged ticks in other parts of the world transmit B. burgdorferi and several other Borrelia species.
Black-legged ticks are also known to transmit Borellia miyamotoi and Borrelia mayonii, two bacteria that cause Lyme-like illnesses. The lone star tick, Amblyomma americanum is the vector or STARI, a Lyme-like illness of uncertain cause.
Ixodes ticks vary in size from a poppy-seed size nymphal tick to a sesame-seed size adult tick. Ticks can carry other infectious agents besides the bacterium that causes Lyme disease, including Ehrlichia, Anaplasma, Babesia, and possibly Bartonella. Infections involving multiple pathogens can be more difficult to diagnose and treat.
Where is it possible to get Lyme Disease?
It is possible to contract Lyme disease in many areas across the United States, and throughout the world. Ticks carrying Lyme disease are found in tall grass, leaf litter, brushy and wooded areas, especially the woodland edge, in rural areas and in cities.
Even in areas that aren’t known to be endemic for Lyme disease, remember that people travel, pets travel, and ticks travel, creating opportunities for exposure.
What are the signs and symptoms of Lyme?
Common symptoms of early Lyme disease include
- Rash - most are solid pink to red; uncommon: “bull’s-eye” or other appearance
- Muscle and joint pain
The non-rash symptoms are often described as a “summertime flu.” Some people may notice areas of numbness or tingling.
Once the infection spreads beyond the skin, it can affect any system of the body, causing many symptoms including:
- Debilitating fatigue
- Muscle pain
- Nerve pain and weakness
- Heart problems
- Psychiatric symptoms: anxiety, depression, irritability, psychosis, and more
- Difficulty with thinking, memory, language and math skills
- Sleep disturbance
- Problems with vision and hearing.
What should I talk to my doctor about if I’m worried about Lyme?
Make sure you talk to your doctor about:
- Where you live, your activities, and travel (exposure risks)
- Any symptoms and signs you have experienced, even if you’re not sure they’re connected to Lyme
- Any pre-existing conditions you have
- Any allergies you have
- Any medication intolerances you may have
- If you’ve just been bitten, discuss preventative antibiotic treatment
- If you have the tick you were bitten by, discuss testing it for pathogens
How can I tell if I have Lyme disease?
Lyme disease should be clinically diagnosed. This means a medical professional must evaluate your symptoms, physical findings, exposure risk, and any test results to determine whether you have the disease. No single factor or test result is enough to determine whether you do or do not have Lyme or other tick-borne illnesses.
What should a medical professional consider in diagnosing Lyme?
- Tick bite and exposure risk. A patient who recalls a tick bite should tell their medical provider. However, just because a you don’t recall a tick bite doesn’t mean you don’t have Lyme. Many patients with Lyme disease do not recall a tick bite. Tell your doctor about your activities, and where you live and have traveled.
- Rash. A classic indicator of Lyme disease is the presence of a rash -- erythema migrans (EM), which is often called a bull’s-eye rash. However, most erythema migrans do not have a bull’s-eye appearance, and many patients do not recall any rash at all. It is important to consider Lyme as a diagnosis if other factors warrant it, even if a rash does not appear or is not recalled.
- Other infections sometimes cause a rash. Borrelia miyamotoi and B. mayonii also cause an EM-like rash. Anaplasma and Ehrlichia occasionally cause a diffuse pink to red, spotty rash. Bartonella has been associated with “vasculitic rashes” that can resemble stretch marks or scattered red lesions on various parts of the body. Other tick borne infectors, like spotted fever rickettsiae, also cause rashes, but are transmitted by different ticks.
- Other Symptoms. Lyme disease has been called the “great imitator.” Borrelia burgdorferi can infect multiple organs and tissues, producing a wide range of symptoms. Lyme can mimic rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, and many difficult-to-diagnose multi-system illnesses. Patients with longer lasting cases of Lyme disease may be misdiagnosed with somatoform disorders.
- Testing. No testing is necessary when a patient has an EM rash and a story that fits with Lyme disease. Testing at this early time is unlikely to give a positive result because it takes time to develop antibodies to the infection. Current tests sometimes fail to identify patients who do in fact have Lyme disease if testing is done too early or too late in the illness. A negative test result alone is not sufficient to definitively rule out Lyme disease as the cause of your symptoms.
Why isn’t a test result enough to tell me if I have Lyme?
Common tests for Lyme disease include ELISAs and Western blots. Both tests work by detecting the patient’s antibodies reacting to the Borrelia burgdorferi bacteria. Many factors affect that response and the tests’ ability to measure it, and can produce both false positive and false negative results. Although the CDC recommends a two-step testing process, consisting of an ELISA as a first test, followed by a Western Blot only if the ELISA is positive or uncertain, i.e. no further testing if the first step is negative, this testing scheme is insensitive. Additionally, positive results might reflect an old, rather than current infection. This is why testing is only one part of the information that contributes to making the diagnosis.
When testing for Lyme, should other tests be performed?
Evaluating other possible causes of a patient’s illness is important. After conducting a thorough history and exam, your health care provider may determine that you need to be tested for diseases that mimic Lyme disease.
What about co-infection testing?
When a patient is being treated for Lyme disease without success or is exhibiting additional symptoms that are not typically seen in Lyme disease, their health care provider should consider testing for Babesia, Anaplasma, Ehrlichia, and Bartonella (other infections that are often seen with Lyme). Left undiagnosed and untreated, these co-infections can not only cause symptoms of their own, their continued presence can prevent successful treatment of Lyme disease.
What treatment does ILADS recommend for Lyme disease?
Many patients with early Lyme have been treated with short courses of antibiotics (< 20 days) and recovered. However, both in practice and in the scientific literature, it has been observed that a significant number of patients do not return to their pre-lyme health status.
The ILADS guidelines working group reviewed the available research and developed recommendations, based upon the best-available evidence, clinical expertise, and patient-centered values.
ILADS recommends a 4-6 week course of antibiotics as initial therapy for patients with early Lyme disease presenting with EM. Further treatment is guided by the clinical course and response to treatment. Although the guidelines do not discuss the treatment of non-EM early Lyme disease or disseminated disease, these topics are reviewed in the Fundamentals Course. For non-EM early disease, initial treatment is similar to that for EM. Patients with disseminated disease may need longer courses of antibiotics and antibiotic combinations.
ILADS emphasizes patient-centered, person specific care, and the importance of careful assessment and re-assessment of the full clinical picture to guide treatment decisions, initially and if symptoms persist or return.
I’ve heard that long-term antibiotic treatment is bad for you. Is it worth it?
Long-term antibiotic therapy is not without risks. Although there are ways to reduce those risks, patients should discuss with their providers the antibiotic options available, the risks and benefits of treatment, and the risks of untreated chronic or persistent Lyme infection. Every decision in medicine requires a risk-benefit calculation, including the decision concerning how to treat Lyme disease.
What if my symptoms continue or come back after treatment?
Follow-up is a mainstay of care for patients with Lyme disease and other tick-borne infections. If symptoms have not resolved, if they return after treatment is stopped, or if new symptoms develop, it is important for your healthcare provider to consider persistent infection as a possible cause of your illness. The bacteria that cause Lyme disease have been shown in the lab as well as in animal and human studies to be able to survive despite antibiotic treatment.
Make sure to discuss other conditions and symptoms with your doctor. A provider must take into account pre-existing conditions, other illnesses, as well as co-infections from other tick-borne organisms, when mapping out a treatment course.
What is Chronic Lyme Disease?
There is a lot of disagreement about chronic Lyme disease. As ILADS defines it, chronic Lyme disease is a long-standing active bacterial infection with any member of the Borrelia burgdorferi family. For patients who have already been treated, this means that the bacteria was able to survive despite antibiotic therapy. ILADS doctors think that persistently ill patients, both treated and untreated, require carefully directed, targeted care, which may include extended courses of antibiotics and antibiotic combinations.
I’ve seen a lot of different information about Lyme disease. What’s going on with the controversy?
- Lyme disease, perhaps taken more seriously when called Lyme borreliosis, is a multi-system infection, which can produce a wide range of symptoms and symptom clusters that can be difficult to distinguish from other illnesses. In its earliest, localized presentation as an EM rash, it is most easily recognized and successfully treated. When untreated or undertreated, it can spread to many parts of the body, and become far more challenging to diagnose and treat.
- Laboratory testing for Lyme disease has been marked by problems with accuracy and reliability.
- The management of persistent symptoms in some patients after treatment remains an area of considerable disagreement among medical providers.
- Because the infection is more geographically widespread than was previously thought, and because the vector range continues to expand, this infection is emerging in many areas where people and providers are unfamiliar with its signs and symptoms.
- The possibility of other co-infections transmitted by the same ticks further complicates the care of patients.
- There is much that remains to be worked out in the science concerning Lyme disease, including best practices for treatment and treatment duration. High-quality treatment trials are few. When the science is incomplete, disagreement among healthcare providers is not uncommon.
- These challenges are reflected in patient experiences as they seek care and guidance in regaining their health.
Is there a vaccine for Lyme disease?
No vaccine against Lyme disease is currently available for people. Promising new vaccines are under development, among them some that target multiple tick-borne pathogens, and some that target tick saliva. (Imagine your body having an early warning system against ticks!!). Vaccination against Lyme and other tick-borne diseases most likely will not remove the need for personal protective measures to prevent tick bites. Even the best vaccines are unable to provide perfect protection from infections, and new pathogens transmitted by ticks continue to be identified.