Is Diagnosing Lyme Disease Difficult?

Despite an estimated 300,000 cases a year, Lyme disease can be difficult to diagnose and treat. Symptoms can drag on for years without clear laboratory findings.

Many people have heard that a bite from a tick the size of a pinhead can spread Lyme disease, triggering a cascade of symptoms. The Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 cases of Lyme disease are diagnosed each year.

What you might not know is how difficult it can be to diagnosis and treat the condition. According to John Nathaniel Aucott, MD, director of the Johns Hopkins Lyme Disease Clinical Research Center, “My chronic Lyme patients were sicker and had less hope than the AIDS patients I worked with.”

Lyme disease may affect your joints and heart and nervous systems. Symptoms can drag on for months or years without clear laboratory findings.

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The Lyme disease bacterium Borrelia burgdorferi is spread through the bite of infected blacklegged (deer) ticks.

Ticks can attach to any part of your body but are often found in hard-to-see areas, such as your groin, armpits, and scalp. In most cases, the tick must be attached for 36 to 48 hours or more before transmitting the Lyme disease bacterium, the CDC adds.

It usually leaves a bullseye rash at the site of the bite.

How is Lyme disease diagnosed?

Your doctor will take a blood sample and send it to a lab for two possible tests, according to CDC guidelines:

• Most Lyme disease tests are designed to detect antibodies made by your body in response to infection.
• Antibodies can take several weeks to develop, so patients may test negative if they were recently infected.
• Antibodies normally persist in your blood for months or years after any infection is gone. That means the test cannot be used to determine a cure, since your infection may not have been due to Lyme disease.
• Infection with other diseases, including tickborne diseases or viral, bacterial, or autoimmune diseases, can result in false positive test results.

The difficulties of diagnosing Lyme disease

Lyme disease can cause fever, chills, headache, fatigue, muscle aches, and swollen lymph nodes. Eventually you might develop paralyzed face muscles and arthritis.

Some patients may develop other puzzling systemic symptoms long after a bite. At that point, they may not show signs of infection on standard tests for antibodies to Borrelia burgdorferi.

Scientists still do not know exactly why, Aucott notes. Symptoms may be caused by an overreaction of the patient’s immune system, long after the tick is gone. Another possibility is that small amounts of bacteria might not trigger the response the tests measure.

To make matters more confusing, some patients don’t remember or report a tick bite. They are often diagnosed instead with depression, chronic fatigue syndrome, or fibromyalgia.

If you’re struggling to figure out if Lyme disease could be at the root of your symptoms, you might start with the symptom questionnaire at the patient group lymedisease.org, where you’ll also find a directory of specialists.

If you’ve already had a course of antibiotics but are still sick, symptoms of severe fatigue, sleep disturbance, musculoskeletal pain, and cognitive problems may lead to a diagnosis called chronic Lyme or post-treatment Lyme disease syndrome.

Lyme disease controversy

Many Lyme patients have gone public, insisting their diagnosis and proper treatment have been delayed while their symptoms expanded and worsened.

The group lymedisease.org and doctors affiliated with them support that viewpoint.

Canadian Theresa Stadnyk’s rapid decline in health included persistent headaches, dizziness, blurred vision, and unexplainable collapses. Over the course of the week after she was admitted to a hospital, her joints ached, and her face went numb. Then she had a stroke while she lay in a seizure monitoring room.

The family was told that Lyme disease “didn’t exist” where they lived in Alberta. Finally, she was diagnosed after her blood samples were sent to the CDC in the United States.

Celebrated author Amy Tan also shared her Lyme disease story, admitting that she passed off early symptoms — a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder – as the aftermath of “too much plane travel.”

Her advice today: “Get treated early and adequately. Don’t wait as I did, and let a treatable disease turn into a chronic one.”

There is, however, growing agreement on some aspects of the disease. Experts say that Lyme must be viewed as a multifactorial disease because ticks carry other bacteria that cause co-infections. They agree that better diagnosis and treatment is needed.

Lyme disease treatment

One set of treatment guidelines comes from a multidisciplinary panel led by the Infectious Diseases Society of America, the American Academy of Neurology, and the American College of Rheumatology, along with representatives from an 12 medical specialties.

If you have the recognizable bullseye rash, the group recommends antibiotics. If there is no rash but otherwise unexplained symptoms like swollen joints, it recommends testing. Patients with arthritis may need antibiotics for as long as a month. You may also need a second course.

A group of doctors has championed the care of patients with chronic Lyme disease and developed guidelines for their care, including in some cases long-term intravenous antibiotics that have the potential for serious side effects.

“Yet it is not uncommon for patient anecdotes and experience to report that long-term antibiotic therapy and other complementary care interventions have helped despite the lack of FDA approval or randomized trials to support their use,” Aucott notes.

How to avoid Lyme disease

The best treatment is prevention.

If you’re in the woods or any other locale that is known to have deer ticks, cover yourself, even on the hottest summer day. Use insect repellant that you know to be effective and shower immediately after you get home. You should also check for ticks among family members and pets every day.

There is a proper way to remove ticks. The CDC recommends:

1. Use clean, fine-tipped tweezers to grasp the tick as close to your skin as possible.
2. Pull upward with steady, even pressure. Don’t twist or jerk the tick, which can cause part of the tick (the mouth) to remain in your skin. If this happens, remove the mouth with tweezers. If you cannot remove the mouth easily with tweezers, leave it alone and let the skin heal.
3. After removing the tick, thoroughly clean the bite area and your hands with rubbing alcohol or soap and water.

Never crush a tick with your fingers. You can drop the tick in alcohol inside a sealed bag or container, or wrap it in tape, and throw it away. You can also flush it down a toilet.

Research on better diagnostic tools and a broader range of treatment is slowly advancing.

If you believe you have Lyme disease, have been diagnosed with it, or live in an area where the condition has been reported, educate yourself. Be your own advocate and seek options.

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