When people think about Lyme disease, what immediately comes to mind is the so-called bullseye rash that’s most often associated with the tick-borne illness. However, according to the Centers for Disease Control and Prevention (CDC), this erythema migrans rash only occurs in an estimated 70 to 80 percent of Lyme patients, which means that as many as 30 percent of those with the disease must rely on their other symptoms in order to get a proper diagnosis.
And unlike other conditions that have telltale signs and symptoms, Lyme disease is all over the map when it comes to how it manifests, making it especially difficult to diagnose.
“It is quite a complicated infection. There are a lot of non-specific systems—and that’s part of the problem,” explains Dr. Kenneth Liegner, a New York-based board-certified internist who’s been involved with Lyme disease research since 1988. “Anybody who thinks it’s all cut and dry… that’s definitely not true.”
So, what can you do to make sure that you aren’t infected? Familiarize yourself with these surprising (and relatively common) Lyme disease symptoms and be sure to get a blood test (the only way to be 100 percent certain).
If you’re worried that you might have contracted Lyme disease, then make sure to monitor the frequency of your headaches. According to the CDC, one of the early signs of Lyme disease that tends to occur within the first 30 days of a tick bite is head pain.
One 2003 study published in the journal Pediatrics detailed two cases of Lyme disease in which patients presented with headaches. The researchers concluded that “it is important for practitioners to consider Lyme disease when patients present with persistent headache,” particularly in areas where the disease is common.
You shouldn’t assume that you have regular age-related arthritis just because you’re well into your 50s or 60s. Rather, the CDC notes that joint pain is one of the more surprising symptoms of late-stage Lyme disease. According to one 2013 study published in the Journal of the American Academy of Orthopaedic Surgeons, as many as 60 percent of untreated patients will experience so-called Lyme arthritis.
One of the main reasons why Lyme disease can be so hard to treat is because, within the first 30 days or so of contraction, it tends to mimic more common illnesses like influenza. As certified nurse practitioner Joyce Knestrick, PhD, CRNP, FAANP, explains, “within one week of infection, half of the people with Lyme disease experience symptoms commonly associated with the flu like… dizziness.”
Numbness in the Feet
The longer it takes for Lyme disease to get diagnosed, the worse a person’s symptoms are. Case in point: According to The Foundation for Peripheral Neuropathy, people with late-stage Lyme disease can experience “pain, numbness, or weakness in the limbs,” which can be debilitating.
When the bacteria that causes Lyme disease enters the heart tissue, it causes what is known as Lyme carditis. According to the CDC, symptoms of Lyme carditis include shortness of breath, heart palpitations, and chest pain—and though it’s usually treatable by antibiotics, the CDC notes that between 1985 and 2018, there were nine reported cases of Lyme carditis that were ultimately fatal.
Because there is still so much to learn about Lyme disease—it was only first recognized as its own condition in 1975—doctors are still continuing to diagnose patients with it based on previously unknown symptoms.
For instance, Liegner notes that one of the first Lyme disease patients he encountered in the late ’80s presented to him with “a cerebellar syndrome where she had difficulty walking, her speech was uncoordinated, and her movements were uncoordinated.” Today there are several studies on Lyme disease’s impact on the cerebellum, and doctors who specialize in Lyme disease know to look out for these related symptoms when screening for the disease.
Similar to speech impairment, in many cases, Lyme disease can cause confusion, memory loss, and brain fog. As the American Lyme Disease Foundation explains, “these [symptoms] are the effects of chemicals produced by the body in response to an infection or inflammation.”
People tend to associate hepatitis, or liver inflammation, with things like alcohol abuse and hepatitis viruses. However, there are several other ways in which your liver can end up inflamed—and Lyme disease is one of them, as the Mayo Clinic points out. Liegner says that if treatment is delayed, Lyme disease “can go to virtually any site in the body, any organ.”
When left untreated for several weeks, Lyme disease can even spread to your eyes. Thankfully, the University of Illinois College of Medicine notes that “involvement of the eye is uncommon in Lyme disease,” but the experts still warn that “inflammation of the eye may develop.”