Early diagnosis of Lyme disease is crucial to prevent chronic illness. Learn why Lyme disease is hard to detect and the steps for timely diagnosis and treatment.
Nearly half a million people in the U.S. are diagnosed with Lyme disease every year. And that’s just the cases that are actually detected and reported—due to various factors, Lyme disease can go undiagnosed for weeks, months, or years, causing chronic illness if not properly treated right away. It’s estimated that at least two million people are living with chronic Lyme disease.
Why is Lyme disease so difficult to diagnose?
Right now, the only FDA-approved blood tests for diagnosing Lyme disease are indirect tests. This means that they look for antibodies against the Lyme disease bacteria, Borrelia burgdorferi, not for the bacteria itself. It can take a while to build up antibodies, so even if you find an engorged tick, see a bullseye rash, and present with other Lyme symptoms right away, you probably will test negative for Lyme disease.
The other reason Lyme is difficult to diagnose is that its symptoms mirror so many other illnesses that it has been called “the great imitator.” Less than 50% of Lyme patients ever get, or find, a bullseye or other shape of Erythema Migrans rash. Without that tell-tale sign of Lyme, patients and providers must go by clinical symptoms. Early symptoms of Lyme disease are flu-like: malaise, fever, aches, chills, swollen lymph nodes. They can easily be written off as viral. Later-stage symptoms of Lyme disease, including neurological, cardiac, and arthritic symptoms, are often misdiagnosed as lupus, ME/CFS, MS, or rheumatoid arthritis.
How is Lyme Disease Diagnosed?
Often, if you go to a doctor with Lyme disease symptoms, they’ll say, “Let’s run a test.” But per the CDC, Lyme is actually a clinical diagnosis. That means that a medical provider must make the diagnosis based on an evaluation of your risk factors for Lyme disease (such as a known tick bite or time spend in a tick-endemic area) and your symptoms. Blood tests can corroborate a clinical suspicion but should not be used alone to determine if a person does or does not have Lyme disease. Lyme disease tests are especially unhelpful during early Lyme, when diagnosis is most important.
For more, see Lyme Disease Diagnosis: Key Steps in Diagnosing Lyme Disease.
Why is Early Diagnosis So Critical?
If diagnosed and treated during the acute stage, most Lyme disease cases can be cleared with a course of antibiotics. If the infection isn’t treated immediately, Lyme disease bacteria (spirochetes) disseminate throughout the body, moving to places like the joints and heart, and sometimes crossing the blood-brain barrier into the central nervous system. Disseminated Lyme disease can cause a host of debilitating symptoms and conditions such as Lyme arthritis, Lyme carditis, severe fatigue, brain fog, sleep disturbances, severe headaches and neck stiffness, facial palsy, and more. In later stages, the infection becomes much more difficult to treat and can become chronic.
How Do You Get an Early Diagnosis?
With Lyme and other tick-borne disease, it is always better to be safe than sorry. If you have a known or suspected tick bite—no matter how long the tick was attached—and/or if you have any symptoms of Lyme disease, immediately see your doctor. If they insist on following blood test results, remind them that Lyme is a clinical diagnosis (and point them to CDC language). If you think you have Lyme disease and feel your doctor is not hearing you, see another doctor. A Lyme Literate Medical Doctor (LLMD) can do a full evaluation to determine if you have Lyme and/or other tick-borne disease.
Are Better Diagnostics on the Horizon?
Yes! Dr. Brandon Jutras, a GLA-funded researcher, is working on a rapid, at-home Lyme disease test. His lab recently won Phase 3 of the LymeX Diagnostics Prize for this test, which uses monoclonal antibodies with immuno-PCR and lateral flow to detect a unique biomarker of the Lyme bacteria in blood and urine. This test holds great promise.
Additionally, GLA is funding researcher Dr. Linden Hu in support of his study of hygromycin-A to potentially cure early Lyme disease and prevent chronic conditions.
Prevention is Key
The best way to prevent Lyme disease is to be Be Tick AWARE:
- AVOID areas where ticks live such as wood piles, leaf litter, long grass, beach grass, busy areas, stone walls, and perimeters where the lawn meets the woods.
- WEAR light-colored clothing to spot ticks more easily, like a long-sleeved tucked in at the waist, long pants tucked into high socks, closed-toed shoes, and a hat with your hair tucked in.
- APPLY EPA-approved tick repellent (such as picaridin or DEET) to skin and insecticide (such as permethrin) to clothing and shoes, as directed.
- REMOVE clothing upon entering the home; toss into the dryer at high temperature for 10-15 minutes to kill live ticks (putting them in the washer won’t work).
- EXAMINE yourself and your pets for ticks daily, feeling for bumps in areas like the back of knees, the groin, the armpits, in and behind the ears, in the belly button, and on the scalp.
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