What You Need to Know About Lyme Disease Before Taking That Hike

Lyme disease can cause swollen joints, chronic fatigue, and a host of ailments that make diagnosis difficult. Erna M. Kojic, MD, Chief of Infectious Diseases at Mount Sinai Morningside and Mount Sinai West, explains the condition and whether you should worry if you feel lethargic a few days after a trek through the woods.

Is there a typical Lyme disease patient?

Each year, 30,000 people in the United States contract Lyme disease caused when a blacklegged tick—also known as a deer tick—carrying the Borrelia burgdorferi bacterium has fed on a person for at least 48 hours. The typical patient is someone who has been hiking, biking, or otherwise been active in a grassy, woody area, like those throughout upstate New York, Long Island, and other parts of the New York metropolitan area. Within a week of contracting a tick bite, they often develop a bullseye rash and experience flu-like symptoms, joint swelling, fever, and fatigue. After visiting an urgent or primary care physician, these patients will receive antibiotic treatment that will cure the disease.  

That being said, I often tell people that Lyme disease can be anything, and anything can be Lyme disease. Depending on how long the bacteria has been untreated, it can affect almost any part of the body, including the nervous system and the heart.

According to the Centers for Disease Control and Prevention (CDC), 20 to 30 percent of those infected with Lyme do not get the bullseye rash. Are there other warning signs?

Unfortunately, there are no foolproof warning signs. But there is a blood test for Lyme disease that you can receive if you experience flu-like symptoms after being active in a tick-infested area.

People who are infected can go untreated for a long time if they don’t see a rash and therefore don’t connect their fatigue with Lyme disease. Fortunately, patients with years-long, unmanaged Lyme disease can be treated with intravenous antibiotics. 

I thought my chronic fatigue was Lyme, but test results were negative. Should I get tested again?

When we test for Lyme disease, we look for specific antibodies that the body produces in response to infection. However, these antibodies cannot be detected until the bacteria has been present in the body for weeks. If you tested negative for Lyme disease but are still concerned that you have the condition, visit an infectious disease specialist.  

I was treated for Lyme, but I still feel fatigued. What should I do?

Although Lyme disease is curable with antibiotic treatment, some people develop something called Post-Treatment Lyme Disease Syndrome, in which joint pain and fatigue linger. This condition is manageable with physical therapy. I advise patients with these lingering symptoms to listen to their body, stay active, and trust that they will get back to their baseline in time.    

There is a common misconception that antibiotic treatment does not work, or that Lyme disease patients should remain on antibiotics indefinitely. This is incorrect.

Any advice for people who are at risk of contracting Lyme disease?

I often tell hikers, bikers, or anyone at risk for tick exposure to apply tick-repelling bug spray to bare skin and to treat their clothing with permethrin, an insect repellent. Permethrin is particularly useful as it kills ticks on contact, and it can last on clothing for several washes.  

I also tell patients that having had Lyme disease once does not prevent you from getting it again, so tick prevention remains important.

Finally, do not blame everything that is bothering you on Lyme disease. Because the disease is so multi-symptomatic, I have had patients miss serious conditions, like multiple sclerosis, because they believe they have Lyme disease. If you have had symptoms for quite a long time, and you test negative for Lyme disease, you should be looking for something else.