Why Is Lyme Disease So Tricky to Diagnose?

For many, time is ticking to find the right answers and start treatment.

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Patients could suffer for years with chronic symptoms before doctors can correctly diagnose Lyme disease, even though it's the most common tick-borne disease in the U.S.

As everyone emerges from their pandemic quarantine freshly vaccinated, it’s more important than ever this spring to be on alert for ticks. That includes protecting your skin from becoming exposed in areas with high tick populations, and monitoring your health for any symptoms that can be linked to Lyme disease.

The Challenges of Diagnosing Lyme Disease

Did you know that cases of Lyme disease result in the target-like rash? The “bullseye” rash is a bold visual indication that it’s time to see a doctor (stat!). However, patients are now getting diagnosed with Lyme after years of suffering from vague symptoms (and no trademark rash). In fact, many have no recollection of ever having a tick bite.

Some of the vague symptoms of Lyme disease include:

  • Fatigue
  • Brain fog
  • Mood swings
  • Body aches

These symptoms may resemble other more common health problems. For example, your doctor might misdiagnose you with polycystic ovary syndrome (PCOS), irritable bowel syndrome (IBS), arthritis, anxiety or depression, to name a few. If you have Lyme disease, treatment for these conditions is unlikely to improve symptoms.

Testing for Lyme Disease

It turns out, the Lyme disease test can also be unreliable, because it’s possible to get a false-negative result if you’re tested too early. That’s because it can take a while for antibodies to rise to a detectable level. On the other hand, doctors want to avoid false-positive tests because this will result in an unnecessary round of antibiotics.

Co-infections can also complicate a complete diagnosis. A single tick could make a person sick with several different illnesses in one bite. So, technically, you may not have an incorrect diagnosis, but rather an incomplete one.

Currently, doctors might decide against testing for Lyme if...

  1. There's no bite mark or target-like rash—even if they live in an area commonly known for having ticks.
  2. There are only vague symptoms present, because they could be caused by a number of different conditions.

The longer it takes to diagnose Lyme disease, the higher the risk of infection spreading to other parts of the body. This could ultimately affect the joints, the heart, and the nervous system.

How to Stay Vigilant in Lyme Prevention and Treatment

The Centers for Disease Control and Prevention has identified areas where Lyme rates are the highest and getting worse; including Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, West Virginia, and Wisconsin.

If you live there, travel there, or go on nature walks or hikes there, you need to be more careful about ticks. Try to cover your skin with long pants and tall socks, use bug spray, and check your body for ticks upon return.

If you’ve completed treatment for other conditions with no relief or had a negative enzyme-linked immunoassay (ELISA) test, followed by a Western Blot test, you may want to ask your doctor to run additional testing or seek a second opinion.