What Patients Need to Know About Lyme Disease, With Liz Horn, Ph.D., MBI

Liz Horn, Ph.D., MBI

Credit: Bay Area Lyme Foundation

Lyme disease is a serious, sometimes misunderstood illness that affects nearly 500,000 people in the U.S. each year. Often called “the great imitator,” it can be hard to diagnose and even harder to treat — especially if symptoms go unnoticed or are brushed off as something else.

In an interview with Liz Horn, Ph.D., MBI, principal investigator for the Lyme Disease Biobank, she explains why Lyme disease is often missed, how it’s transmitted and what patients need to know about early signs, testing challenges and staying safe. Her message is clear: Trust your instincts, advocate for your care and take steps to prevent tick bites — especially in high-risk areas.

What exactly is Lyme disease, and how is it transmitted?

Liz Horn, Ph.D., MBI: Lyme disease is an infectious disease — the most common vector-borne disease in the U.S. About 500,000 people are diagnosed with Lyme each year. Lyme disease is caused by a bacteria (Borrelia burgdorferi) and is typically transmitted through the bite of an infected tick (the black-legged tick) to people and pets. Lyme disease can also be passed from a pregnant mother to her unborn baby. When identified early and treated with antibiotics, most people recover from the infection. However, some people (up to 20%) who were treated with antibiotics go on to have persistent, potentially disabling symptoms. Plus, it’s often misdiagnosed due to lack of awareness and inaccurate diagnostic tests. If untreated, Lyme disease can progress and affect the joints, nervous system and heart, leading to serious complications. Lyme disease can be very debilitating.

How common is it for Lyme disease patients to never see a tick or get a bullseye rash?

LH: Most people never see the tick that bit them. Tick saliva has an anesthetic that numbs the skin, so you don’t feel the tick biting you. Plus, ticks are very tiny, the size of a poppy seed or sesame seed, and can be difficult to spot. Not everyone with Lyme disease gets a rash. Around 70% to 80% of people get a rash, and Lyme rashes can vary widely in shape, size and appearance. It is often described as a bulls-eye due to central clearing, but bulls-eye rashes are not common.

Why do so many patients with Lyme, especially those with late-stage symptoms, go undiagnosed for so long?

LH: Lyme symptoms are often nonspecific (headache, fatigue, body aches, joint pain, fever, etc.), and as mentioned above not everyone gets a rash or knows they were bitten by a tick. Lyme is often called the “great imitator” and can mimic other conditions, leading to misdiagnoses and delays. And our current laboratory tests are insensitive and can miss early or late-stage cases. Delays in diagnosis make Lyme more difficult to treat.

What is the current standard of care for someone diagnosed with Lyme disease — early or late stage?

LH: For early uncomplicated Lyme disease, treatment is typically a 10- to 28-day course of oral antibiotics, usually doxycycline. For late-stage Lyme disease, when the infection has spread to the joints, nervous system or heart, treatment may involve longer courses or intravenous antibiotics, depending on the symptoms. For those who continue to experience symptoms after treatment, there’s currently no consensus on how best to manage these persistent symptoms. Research is ongoing to better understand and improve care for these patients.

What steps can people take to protect themselves, especially in high-risk areas?

LH: To reduce the risk of Lyme disease, people in high-risk areas should take these precautions:

• Use EPA-registered insect repellents containing DEET, picaridin or permethrin (on clothing).
• Wear long sleeves and pants, and tuck pants into socks when in grassy or wooded areas.
• Stay on trails and avoid tall grasses or brush.
• Check for ticks on your body, clothes and pets after being outdoors, especially under arms, behind knees, around the waist and on the scalp. Also check your gear before bringing it inside.
• Shower within two hours of coming indoors to help remove unattached ticks.

Prompt tick removal and awareness of symptoms can also help with early detection and treatment.

What is the current state of diagnostic testing, and where do we need improvement?

LH: Our current Lyme tests rely on serology, an indirect method that detects antibodies in response to infection. Serology tests can be negative in early disease before antibodies develop and may not clearly distinguish between active and past infections. We need tests that are more sensitive in early disease, especially for people who do not present with a Lyme rash. We also need tests that can directly detect an active Lyme infection. And finally, having a test that can determine if antibiotic treatment successfully cleared the infection would be a game changer. Lyme Disease Biobank supports diagnostic research by providing well-characterized samples to researchers developing better tests.

What advice would you give patients who feel dismissed or misdiagnosed?

LH: First, trust your instincts. You know your body — if something feels wrong, keep advocating for yourself. If you continue to have symptoms after treatment, go back to your health care provider. If your provider dismisses your concerns, find another one. Seek out providers who are experienced in tick-borne illnesses and are willing to listen. Keep a detailed record of your symptoms, test results and treatment history. And know that you’re not alone. Many people with Lyme have faced similar challenges, and there are advocacy groups and support networks that can help you find resources, community and knowledgeable clinicians. Most importantly, don’t give up; you matter, and your voice matters. Together we can make Lyme disease easy to diagnose and simple to cure. For more information, visit the Bay Area Lyme Foundation.