What is chronic Lyme disease?

Most people have heard of Lyme disease. It’s an infection most commonly caused by one of three pathogenic species of the spirochete Borreliella. In the United States, it is most often caused by the bacteria Borrelia burgdorferi (or B. burgdorferi) and is transmitted by mosquitoes, fleas, and deer ticks. It’s common—about 20,000-30,000 new cases are reported annually, though many more likely go undetected. Chronic Lyme disease is a term that’s not quite as well-known or understood. In fact, some people even question its existence. So what is it, and what should you do if you suspect you may have it?

What is chronic Lyme disease?

Lyme disease occurs in two stages: acute and chronic.

Acute Lyme is an infectious disease that occurs right after the insect bite that caused the infection. This is the stage where it’s most treatable because it’s yet to spread through the body, says Jyotsna Shah, Ph.D., president of IGeneX, a company that specializes in tick-borne diseases. Erythema migrans (EM), the bull’s-eye rash, is considered a telltale sign of early Lyme disease, but only about 70% of people have this symptom, according to the Centers for Disease Control and Prevention (CDC). EM is a rash that appears at the site of the tick bite, usually within seven to 14 days after the bite (but the rash can range from three to 30 days after the bite). So, unless you see a tick bite and have the bull’s-eye rash, you might not realize you’re infected and may not seek treatment for Lyme.

Chronic Lyme disease is what happens when the bacteria from the initial infection spreads to muscles, joints, and organs. The original infection could have occurred months or even years ago, says Shah. This can happen if acute Lyme is not diagnosed and goes untreated. Or, if the original treatment doesn’t work.  

The risk of acute Lyme disease transitioning into a chronic condition increases the longer a Lyme infection goes untreated. Patients are more likely to fully recover from Lyme disease if the infection is discovered and treated as early as possible after finding a tick bite.

It’s estimated that 5% to 15% of patients with a positive diagnosis of Lyme disease will have symptoms that persist even after treatment. This is known as post-treatment Lyme disease syndrome (PTLDS) or post-Lyme disease syndrome (PLDS). These terms are often used interchangeably with chronic Lyme. For the majority of patients, these symptoms improve gradually over six months to one year. 

Is chronic Lyme disease real?

Chronic Lyme disease is a real, and serious condition. However, there is inconsistency in  diagnosis and treatment in the medical community because chronic Lyme disease isn’t well-defined and is difficult to definitively diagnose.

There is no one clinical definition for chronic Lyme. It’s often used as an umbrella term for a few groups of patients: 

1. People with late Lyme disease, where the original infection wasn’t treated and has progressed
2. People with Lyme disease symptoms that continue even after treatment
3. People presenting “nonspecific signs and symptoms of unclear cause” who are given a chronic Lyme disease diagnosis based on unproven and/or non-validated laboratory tests and clinical criteria

Lyme disease symptoms mirror many other common conditions, and it’s easy to miss an insect bite. There is a blood test for Lyme, but it commonly produces false negative results. Factors like the stage of the disease, type of sample, and variations in tests all affect the sensitivity and interpretation of tests for Lyme disease. If the infection was recent, antibodies may not yet be present at the time of testing. 

If it’s been some time since the original spirochete infection, as is usually the case with chronic Lyme borreliosis, “the active infection may no longer be picked up on a blood test,” says Raphael Kellman, MD, founder of Kellman Wellness Center in New York City. “By that point, a person’s symptoms are often more related to the overactivation of the immune system, rather than the acute bacterial infection.”

“In the medical field, we like to fit patients in neat little boxes and solve for their ailments,” says Shah. “In relation to tick-borne illness, this can be extremely difficult due to the fact that Lyme disease can present as over 100 symptoms, and no two cases are alike.” 

Chronic Lyme disease symptoms

Chronic symptoms of Lyme disease aren’t always clear-cut and manifest similarly to other conditions, which can lead to misdiagnosis. “Chronic Lyme disease is often used to describe a range of physical, cognitive, and emotional symptoms that crop up after getting Lyme disease and persist for months to years after infection,” Shah says. Common persistent symptoms include:

• Long-lasting, severe fatigue
• Neurological symptoms such as brain fog, cognitive impairment, or facial palsy
• Sensory sensitivity, particularly to lights and sounds
• Anxiety or depression
• Joint pain 
• Muscle aches
• Neuropathy (tingling and numbness)
• Gastrointestinal issues, such as abdominal pain, nausea, blood in the stool, or chronic diarrhea

“Many tick-borne infections go misdiagnosed for months because these nonspecific symptoms mirror other illnesses,” Shah explains, adding that these symptoms can mimic chronic fatigue syndrome, fibromyalgia, ALS, Alzheimer’s disease, depression, insomnia, and autoimmune disorders such as rheumatoid arthritis and multiple sclerosis (MS).

Chronic Lyme can also trigger an auto-immune response or make a person more susceptible to other infections, systemic inflammations, and imbalances in the gut microbiome, according to Dr. Kellman.

If you suspect you have chronic Lyme, your first step should be to a primary care provider you trust who can help you diagnose by eliminating other potential illnesses.

Chronic Lyme disease treatment protocols

Unfortunately, there is no standard chronic Lyme disease treatment or therapy because the symptoms can vary so greatly between individuals. On top of that, there is no FDA-approved treatment for prolonged cases of Lyme disease. However, patients will often undergo a variety of treatment that includes antibiotics, IV therapy, and lifestyle changes. 

Antibiotics

Antibiotic treatment is the first line of defense in Lyme disease. Most people with acute Lyme will respond well to a two- to four-week course of antibiotics, such as:

• Doxycycline
• Amoxicillin
• Ceftriaxone
• Azithromycin 

Approximately 10% to 15% of individuals who are taking antibiotics to treat early Lyme disease experience a brief worsening of symptoms. This is called a Jarisch-Herxheimer reaction, which is when substances released by the dying bacteria cause a brief worsening of symptoms. This reaction occurs within 24 hours after starting antibiotics, usually continues for a day or so, and then resolves spontaneously. If this happens, antibiotic therapy should not be stopped, but should instead continue as originally planned.

For patients with chronic Lyme, long-term antibiotics do not typically improve symptoms.

Intravenous (IV) therapy

If oral antibiotic therapy fails, IV antibiotics are sometimes used to treat nervous system issues that arise from chronic Lyme disease and have been shown to have some success.

Supportive medication

Physicians will often prescribe medications that help to alleviate symptoms of chronic Lyme. These are not a cure but can help to improve quality of life. For example:

• Gabapentin for nerve pain
• Antidepressants for mood symptoms

Analgesics such as ibuprofen or meloxicam for muscle aches or joint pain

The drugs used will vary depending on the type of symptoms you have.

Diet

Nutrition cannot cure chronic Lyme disease, but it can help with some of the symptoms. Removing inflammatory foods and adding more nutrient-dense, whole foods help support immunity.

RELATED: The best diet for inflammation

Support groups

Living with disease is already difficult and adding doubt from loved ones and the health community can make the experience even more painful. Seeking out local or online support groups through organizations like lymedisease.org, the Lyme Disease Association, and others can help people with chronic Lyme disease connect with others in similar situations. Clinicians may also recommend psychotherapy to help with anxiety or depression.

Finding the right treatment can take significant trial and error. Don’t give up. There is always new research becoming available. Stay up to date by following sites like the International Lyme and Associated Diseases Society (ILADS).