Is Chronic Lyme Disease Real?

A walk in the woods, a bite from a deer tick, a bulls-eye rash and flu-like symptoms: That’s a common pattern for Lyme disease, a bacterial infection that usually gets better after a course of antibiotics.

Whether Lyme disease symptoms continue for months or even years after the initial infection — a condition sometimes called “chronic Lyme disease” and officially named Post-Treatment Lyme Disease Syndrome — is debated among doctors.

Lyme Disease Transmission

Lyme disease is an infection of the bacterium Borrelia burgdorferi. It’s transmitted during the bite of a black-legged tick, also called a “deer tick.”

The ticks are found in wooded, grassy areas or shrubs (often in people’s yards) in the eastern half of the U.S., especially in northeastern and upper-midwestern states. If you brush by foliage with a tick lying in wait, the tick climbs onto you and finds a place to latch on and take a bite.

Doctors disagree on how long it takes for bacteria to be transmitted to humans through tick bites. Guidelines from the Infectious Diseases Society of America, American Academy of Neurology and American College of Rheumatology say the tick must be attached for at least 36 hours. Other groups — such as the International Lyme and Associated Diseases Society — suspect that Lyme disease may be transmitted faster.

[READ: 6 Sneaky Signs of Lyme Disease.]

Lyme Disease Symptoms

Lyme disease symptoms show up three to 30 days after transmission.

Most often, a bulls-eye-shaped rash develops at the site of the tick bite in about a week. “It might be a bulls-eye, or it might just be a solid red circle. Sometimes you can see a bite mark in the middle of the rash. One key for diagnosis is that the rash itself doesn’t hurt, isn’t very itchy and gets bigger over the course of days, slowly expanding outward a week after it first started,” says Dr. Andrew Handel, a pediatric infectious disease specialist at Stony Brook Children’s Hospital.

Other symptoms of Lyme disease can include:

— Fever.

— Chills.


— Fatigue.

— Muscle aches.

Joint aches.

— Swollen lymph nodes.

Later on, untreated Lyme disease can lead to other symptoms and serious problems.

“You can have severe neck pain and headaches from Lyme meningitis, an infection of the fluid around the brain. Or you may have a droopy face from Bell’s palsy or swollen and painful joints, usually the knees,” Handel notes.

People with untreated Lyme disease can also develop:

— Rashes elsewhere on the body.

— Heart palpitations caused by an irregular heartbeat (a rare and potentially deadly condition called Lyme carditis).

— Dizziness.

— Shortness of breath.

Numbness, pain or tingling in the feet or hands.

[Read: How to Recognize and Treat Spider Bites.]

Lyme Disease Diagnosis and Treatment

Doctors consider a combination of factors when diagnosing Lyme disease. The factors include:

— Whether there really was exposure to ticks.

— How long the tick was attached to the person.

— The presence of a rash.

— The elimination of other potential causes of symptoms.

— Blood work, if necessary. “If you have certain symptoms besides the rash, we order blood work. There are few accurate tests for finding the bacteria itself. We’re looking for antibodies against the bacteria. They develop about two to four weeks after being bitten,” Handel says.

Treatment for Lyme disease is a two-to-four week course of oral or intravenous antibiotics such as doxycycline, amoxicillin or cefuroxime.

[READ: Chronic Fatigue Syndrome: Symptoms and Treatments]

Post-Treatment Lyme Disease Syndrome

While most cases of Lyme disease are cured after antibiotics, about 5% of people with Lyme disease say they experience pain, fatigue or foggy thinking for months or years after treatment.

Causes of these symptoms are hotly debated. Most doctors maintain that another condition is to blame. “One thought is that the initial bacterial infection can initiate an autoimmune response that continues long after the actual Borrelia bacteria have been cleared from the body. We know that this autoimmune triggering phenomenon can be associated with other diseases like multiple sclerosis,” says Dr. Dean Sutherland, a neurologist at Sarasota Memorial Health Care System in Florida.

Some doctors, such as experts who follow ILADS guidelines, suspect that the Borrelia bacteria are still in the tissue and potentially active (although hard to detect). Whether bacteria can remain in the body after initial antibiotics treatment is debated.

PTLDS Diagnosis and Treatment

When it comes to diagnosis, both camps of doctors — those who believe Lyme disease bacteria can remain in the body after initial antibiotics treatment and those who don’t buy it — first try to figure out if something else is causing symptoms that seem to be causing PTLDS.

Doctors also order blood tests to see if the patient has antibodies indicating a past Lyme disease infection.

When PTLDS is the only explanation for symptoms, treatment focuses on symptom management. For example, if you have general pain or headaches, you can work with a neurologist to see if you might benefit from certain medications.

“As you can imagine, treatment is symptom-based. Fatigue, aches and pains, balance complaints and cognitive issues are all addressed individually. We also encourage patients to exercise regularly, maintain good sleep hygiene, limit alcohol consumption and maintain a healthy diet,” Sutherland says. “Sometimes, psychological counseling plays a part in treatment, as many patients feel frustrated when extensive testing comes back negative.”

The risk of additional antibiotics

In addition to lifestyle modifications, some doctors (those following ILADS guidelines) may recommend that people with PTLDS undergo additional treatment with antibiotics. And that’s where more controversy comes in. Doctors who follow IDSA guidelines worry that additional antibiotics treatment is risky.

“There are patients who’ll be given months or years of antibiotics through an IV, and multiple studies have made clear that it doesn’t work,” Handel says. “We want to prevent people from being on long-term antibiotics, which has many dangerous side effects including renal failure and antibiotics resistance.”

The Centers for Disease Control and Prevention urges people with PTLDS to think carefully about long-term antibiotic treatment, and talk to their doctors about possible risks before agreeing to it.

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