Lyme disease generates many questions from patients and loved ones. We take these questions to heart as we work hard towards finding meaningful solutions to improving the care for Lyme disease patients. Some of the most frequently asked questions are answered here.
However, for patient-specific medical advice we ask that you seek the care of a health practitioner.
- Lyme disease risk can be reduced by:
- Wearing permethrin treated clothing, minimizing exposed skin, and using tick repellent when enjoying the outdoors
- Staying on the trail when hiking and avoiding tall grass and leaf litter
- Creating a tick-free zone around your home
- Doing daily tick checks
- Removing ticks with tweezers as soon as possible
- Putting clothes in a high heat dryer for 15 minutes
Learn More About Lyme Disease Prevention
- Early symptoms can mimic summer flu and other bacterial and viral illnesses: fever, achiness, extreme fatigue and malaise, severe headache or neck ache
- A red round expanding skin rash may, or may not, be present
- When present, the expanding skin rash is usually greater than 2 inches in size
- Rash is not usually extremely itchy
- Rash lasts for days to weeks and can be accompanied by flu-like symptoms
Learn More About the Signs and Symptoms of Lyme Disease
- No, not everyone with Lyme disease gets a rash. The rash is not always present or easily recognizable in early Lyme disease.
- The rash can often be missed or mistaken for a spider bite when not a stereotypical bull’s eye appearance
- Some people get multiple rashes from spread of the Lyme disease bacteria through the blood stream
- No, the Lyme disease rash is usually not a bulls-eye. However, when it is a bulls-eye rash it is usually a tell-tale sign of Lyme disease.
- The rash is more typically a round expanding red skin lesion usually greater than 2 inches in size
Learn How to Recognize the Lyme Disease Rash
- Other infections do not typically present with a bulls-eye rash
- Some primary skin conditions can have multiple small bulls-eye lesions (such as erythema multiforme)
- When a bulls-eye rash is present it is a tell-tale sign and in the appropriate circumstances is diagnostic for Lyme disease
- Systemic symptoms from disseminated disease can be debilitating and impact multiple body systems such as joints, heart, brain, muscles, and the nervous system.
Systemic symptoms include:
- Severe pain, neurologic symptoms and cognitive impairment
- Cardiac problems, including passing out, slow pulse, and life-threatening inflammation of the heart, called carditis
- Facial palsy, meningitis, and headaches
- Signs of meningitis include severe headache, light sensitivity
- Swollen knees and Lyme Arthritis
- Untreated Lyme disease during pregnancy can lead to infection of the placenta, and the infection can spread from mother to fetus.
- The CDC states that with appropriate maternal antibiotic treatment there is no increased risk of adverse birth outcomes.
- However, there are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy. More research is needed to better understand maternal transmission and its potential risks.
Yes:
- Tick bites can generate a local allergic reaction which is sometimes confused with Lyme disease but is a smaller skin reaction and does not expand over time LEARN MORE HERE
- Alpha gal meat allergy can develop after a Lone Star tick bite and cause allergic reactions after ingestion of mammalian meat
- Deer ticks can transmit multiple pathogens in a single bite, including Anaplasma, Babesia, Powassan virus and other species of borrelia such as Borrelia mayonii and Borrelia miyamotoi. Other tick-borne illnesses more commonly transmitted by other tick species include Ehrlichiosis, Rocky Mountain Spotted Fever (and other rickettsias) and Southern Tick-Associated Rash Illness (STARI).
- These tick-borne infections on their own can be quite severe and additionally challenging in combination with Lyme disease.
- Rocky Mountain Spotted Fever, Anaplasmosis, and Powassan virus can be fatal.
- Babesia, a malaria-like protozoan, can be particularly challenging for those with compromised immunity, a prior splenectomy, or those who have been taking Rituxan or other immune suppressing drugs.
- Rapid elevated fever
- Elevated liver function tests
- Low platelet counts
- Anemia
- Signs of hemolysis
- Elevated LDH
Note: Babesia can also be transmitted through blood transfusions
Yes, co-infections, and Lyme disease, are spreading geographically
- Yes, Borrelia burgdorferi blocks the complement system of immune detection, allowing it to survive longer
- B. burgdorferi can also evade the adaptive immune response where antibodies are produced
- B. burgdorferi decorates its cell surface with one set of proteins and when the immune antibody response gets generated it suddenly changes its surface proteins to go undetected and keep ahead of the immune response
- Most people diagnosed and treated early with antibiotics get better
- However, 10% – 20% of early diagnosed/early treated patients develop chronic ongoing symptoms
- The risk of chronic symptoms is higher if the initial disease is more severe or if there are neurologic symptoms
- Early diagnosis and treatment usually improves prognosis
Note: A biomarker is needed but currently not available to measure risk of chronic symptoms and measure treatment success
- Most people diagnosed and treated early with antibiotics get better
- However, 10% – 20% of early diagnosed/early treated patients develop chronic ongoing symptoms
- The risk of chronic symptoms is higher if the initial disease is more severe or if there are neurologic symptoms
- Early diagnosis and treatment usually improves prognosis
Note: A biomarker is needed but currently not available to measure risk of chronic symptoms and measure treatment success
- Genetic predispositions
- Immunologic variables
- Complications from other tick-borne co-infections
- There was a human Lyme disease vaccine, LYMErix, in the late 1990s which was removed from the market in 2002 due to vaccine side effects concerns.
- The French company, Valneva, is developing an improved Lyme disease vaccine, VLA15, presently in human clinical testing
- Other novel vaccines are in animal testing
- There are also mouse vaccination strategies to address that part of the transmission cycle
- Yes, you can get it again
- Spirochetes may drive pathways that interfere with immunologic memory
- If you’re reinfected with exactly the same strain you may have some resistance
- However, there is not much data to illuminate how protective immunity to subsequent infections may or may not be being generated
- The Tick-Borne Disease Working Group (TBDWG) was established by Congress as part of the 21st Century Cures Act in 2016 to provide subject matter expertise and to review federal efforts related to all tick-borne diseases, to help ensure interagency coordination and to examine research priorities.
- John Aucott, MD, Director of the Johns Hopkins Lyme Disease Research Center, served as the first Chairman of the TBDWG from 2017-2018. Dr. Aucott also served on the Clinical Aspects of Lyme Disease Subcommittee in 2019-2020 and the Diagnostics Subcommittee in 2021-2022.
- These working groups have sent three comprehensive Reports to Congress
- Congress, HHS and CDC all acknowledge the need for more resources. Government funding has begun to increase in recent years thanks to TBDWG recommendations and advocacy efforts, and yet Lyme disease research is still significantly underfunded, especially funding for human clinical research.
