Lyme disease has long been taught in medical schools as being a simple tick-borne illness that is difficult to catch and easy to treat, making the necessity for further research and continued education non-urgent within the professional community. However, as new studies and findings emerge, this fallacy is becoming harder for the medical community to maintain as truth.
Within the last five years, the CDC has reported an increase from 30,000 to more than 300,000 new cases of Lyme disease per year, making it the fastest growing vector-borne illness in America to date. But the surfacing science and updated information on Lyme isn’t spreading as rapidly, leaving gaping space for misconceptions among doctors and unsuspecting victims.
In the ten years since being diagnosed with Lyme disease, I’ve heard a number of questions and assumptions from inquisitive and confused people as to the nature of my condition. Below are the most common misunderstandings about Lyme that continue to threaten our ability to swiftly diagnose and effectively treat this destructive disease.
Truths about Lyme Disease Symptoms, Treatment, and Testing
MYTH 1: Lyme is only about Borrelia.
THE TRUTH: The truth is that ticks carry multiple microbes, including common coinfections like Bartonella, Babesia, Ehrlichia, and a more recently increasing virus, Powassan. Borrelia, a bacterial microbe, requires antibiotic treatment in an acute stage of the infection. However, these antibiotics will not treat parasitic and viral pathogens that can often co-infect a patient.
MYTH 2: You can’t get Lyme in the winter.
THE TRUTH: With the holiday season’s plummeting temperatures at our doorstep, the wooded areas in Lyme-endemic regions such as the Northeast and Midwest are often assumed to be tick-free. But this doesn’t mean we are out of the woods. With increasingly unusual weather patterns and many regions in the country that stay above freezing year-round, ticks continue to remain a threat. Plus, Lyme is emerging in many areas where doctors and residents are unfamiliar with the signs and symptoms.
MYTH 3: Lyme is always cured with 10-21 days of antibiotics.
THE TRUTH: The CDC suggests that both early and late-stage Lyme disease will be cured by a maximum of 21 days of antibiotics. But there’s a caveat: A small percentage of people (10-20%) will go on to develop what is called “post-treatment Lyme disease syndrome” (PTLDS), more commonly and controversially referred to as chronic Lyme disease. Answers as to the cause (and even the name) of this lingering condition vary depending on which “expert” you ask, indicating a large medical division. One thing can be certain, however, and that is not everyone gets better and stays better after receiving the CDC recommended maximum dose of antibiotics. In some cases, Lyme disease treatment will require a multifaceted approach to care and can include medications, herbs, supplements, and more.
MYTH 4: Lyme always presents with telltale symptoms such as the classic bull’s-eye rash.
THE TRUTH: In the absence of reliable lab results, one of the most recognizable Lyme disease symptoms that allows for an easy clinical diagnosis is the bull’s-eye rash, also known as erythema migrans. While the CDC reports 70-80% of people diagnosed with Lyme disease develop the rash, it is unknown how many people developed the rash that were unable to identify it. Tick bites to locations on the body such as the top or back of the head are often out of a person’s view and easily masked by hair, which may cause initial signs of acute infection to go undetected.
MYTH 5: A tick bite is the only way to contract Lyme.
THE TRUTH: While current research points to tick bites being the main method of transmission, there are potentially lesser-known methods of contracting Lyme disease, such as in utero during pregnancy, suggests a 2018 review in PLoS One. Lyme disease may also be transmitted through blood transfusions.
MYTH 6: You can’t catch Lyme in a city.
THE TRUTH: It’s popular to believe you must frequent the woods in order to catch Lyme disease since that’s where most deer live, and deer ticks get Lyme from deer. However, Lyme disease-carrying ticks can be found in cities and yards across America, even without a heavy local deer population. Bird migration and exploding rodent populations have inflamed the likelihood of Lyme, making it into our most populated cities and onto our front lawns. It’s estimated that 75% of tick bites occur when doing simple yard tasks or activities. A good Lyme disease prevention strategy is diligent lawn maintenance and awareness, which can minimize tick traffic and lessen your risk of a tick bite.
MYTH 7: You will test positive for Lyme if you are infected.
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THE TRUTH: The topic of Lyme disease testing and lab diagnostics is more layered than the CDC’s two-tier testing criteria currently in use by medical professionals across the nation. In early Lyme infections, patients will test negative 50-60% of the time using these tests due to the length of time needed to develop antibodies against the bacteria, which is at least two to three weeks. The first test for Lyme is an indirect detection test called ELISA, followed by the Western Blot, both of which test for antibodies against Lyme. Direct detection tests such as the PCR test, which looks for evidence of the DNA of Borrelia burgdorferi in the blood or spinal fluid, is not considered sensitive as the spirochete doesn’t stay in the blood or spinal fluid for very long. There are no perfect tests, which is why proper education is needed.
MYTH 8: Everyone remembers a tick bite.
THE TRUTH: With the smallest of deer ticks in the nymph and larva stage being roughly the size of a poppyseed, it’s near impossible to feel a tick bite, let alone see an embedded tick. Indeed tick saliva contains a numbing agent, so you don’t detect it as it punctures your skin.
In hidden parts of the body, such as the scalp, hair makes the task even more challenging. About the size of a sesame seed, adult ticks are not much easier to spot. 20-30% of people diagnosed with Lyme disease recall a tick bite, making early detection and swift, effective treatment difficult to achieve.
Jenny Menzel, H.C. is a Certified Health Coach and branding specialist for various alternative healthcare practices, and volunteers her design skills to the annual grassroots campaign, the Lyme Disease Challenge. Jenny was diagnosed with Lyme in 2010 after 8 years of undiagnosed chronic pain and fatigue, and has reached remission upon employing multiple alternative therapies, including Āyurveda and Bee Venom Therapy.
Cohen EB, Auckland LD, Marra PP, Hamer SA. Avian migrants facilitate invasions of neotropical ticks and tick-borne pathogens into the United States. Applied and Environmental Microbiology. 2015 Dec; 81(24): 8366-78. doi: 10.1128/AEM.02656-15.
Diagnosis. Columbia University Irving Medical Center website. https://www.columbia-lyme.org/diagnosis
Signs and Symptoms of Untreated Lyme Disease. Centers for Disease Control and Prevention website. https://www.cdc.gov/lyme/signs_symptoms/index.html
Stafford KC. Tick Management Handbook: An integrated guide for homeowners, pest control operators, and public health officials for the prevention of tick-associated disease. New Haven, CT. The Connecticut Agricultural Experiment Station; 2007.