Up until the COVID-19 pandemic, many of those suffering from post-infectious chronic illness weren’t taken seriously by medical professionals. The typical symptoms associated with long COVID-19, like brain fog, dizziness and fatigue are consistent with dysregulation of the autonomic nervous system. This is also seen with other infections – one of them being Lyme disease. The sheer number of people impacted by long COVID-19 has drawn the attention of doctors and researchers – although some have been treating and researching these conditions for years. 

Lyme disease, in both the acute and “chronic” form, is a nuanced issue. We spoke with experts to help you make sense of it all. 

What are the symptoms of Lyme disease?

Dr. John Aucott, the director of the Johns Hopkins Lyme Disease Clinical Research Center, says that in the acute phase, some patients may experience a round red rash (Erythema Migrans or the "Bulls-Eye Rash") at the site of the tick bite, or signs of infection like fever, chills, malaise and fatigue. “The rash is the distinguishing characteristic, but the rest of the symptoms don’t distinguish Lyme disease from other infections,” he explains. 

It's tick season.How is Lyme disease transmitted? Here's what you need to know.

What happens if you never get treated for Lyme disease?

If you do not receive treatment for Lyme disease, the infection could still be present in your body. “If you have Lyme disease that was never treated, the infection is still present in about half the people who demonstrate the classic form of long-standing Lyme disease, which is Lyme arthritis. That is actually how it was discovered – by an outbreak of arthritis in the shoulder in a town called Lyme, Connecticut.” 

Untreated Lyme disease can also lead to a condition called “Lyme carditis,” which is when the bacterium infects any part of the heart, which can lead to serious complications. 

Additionally, some neurological complications of an untreated Lyme infection include aseptic meningitis, (inflammation of the meninges, or the lining that protects your brain and spinal cord) and other symptoms of neuropathy like numbness, pain, weakness and facial palsy/droop (paralysis of the facial muscles.)

Is Lyme disease curable?Here's what you should know about tick bites and symptoms.

What does chronic Lyme disease feel like?

Post-treatment Lyme Disease Syndrome (PTLDS) or “chronic” Lyme disease looks different than untreated Lyme disease. Dr. Brit Adler, a rheumatologist and researcher at Johns Hopkins Medicine in Baltimore, and an author of a recently published review paper on the chronic symptoms associated with Lyme disease says, “Most patients recover after the infection, but some patients (about 10-20%) develop long-term symptoms which include fatigue, body aches, and difficulty thinking that are often debilitating and life-altering.” 

Adler says that these symptoms may be due to an issue with the autonomic nervous system, “Some patients with long-term symptoms have a dysregulated autonomic nervous system, which is the part of the nervous system that controls heart rate and blood pressure, digestion, sweating, temperature, and pupil size. Most people don't consciously think about these vital functions, but when this part of the nervous system does not work properly it results in multiple symptoms including dizziness when standing, weakness, brain fog, and gastrointestinal symptoms among many others.” 

Why did it take a pandemic for attention to be drawn to this debilitating condition? It’s complicated. 

One of the major reasons for this is that the testing for Lyme disease is imperfect. The most commonly used tests are antibody tests, which measure the human immune system’s response to infection. “The problem is these antibodies take several weeks to appear, they don’t just appear overnight, so they don’t work well in the first few weeks of infection because the antibody response takes 3-4 weeks to form,” says Aucott. This means that the diagnosis is often made based on symptoms, which can be challenging and uncomfortable. 

Adler adds that it also comes down to physician education. “Physicians don't know much about dysautonomia (we were never trained) and so it is much easier to attribute a long list of symptoms to anxiety or a psychological disorder than to a disease that we have no exposure to,” she explains. 

Lyme disease is transmitted by being bitten by a tick. The best way to prevent Lyme disease in any form is to protect yourself from ticks and other insects by wearing long sleeves and pants, using bug repellent, checking your skin regularly and showering after being outside.