June 21, 2018
Woman in pain talking to doctor.

Chronic Lyme Disease: What to Know

by Peter Jaret

When the signs and symptoms of Lyme disease were first identified in the 1970s, they posed a mystery. It wasn’t long before researchers pinpointed the cause: a bacterium called Borrelia burgdorferi, which is spread in North America primarily by two species of ticks, deer ticks and western black-legged ticks.

Yet misconceptions linger. One is that Lyme disease is difficult to treat, leaving many people to suffer chronic symptoms. Patients who are told they have chronic Lyme disease—also known as posttreatment Lyme disease syndrome—are often treated with unproven therapies, such as repeated courses of oral or intravenous (IV) antibiotics or immune globulins (infection-fighting antibodies) administered over months or even years.

Such treatments provide no substantial long-term improvement and can result in serious complications, including death, according to a troubling report published in June 2017 in the Morbidity and Mortality Weekly Report. Researchers from the CDC drew attention to the range of complications that affected people treated with long courses of antibiotics or immune globulins, including:

  • Serious bacterial infections, such as those that affect the bloodstream (sepsis), the colon (Clostridium difficile colitis), and the spine (osteomyelitis), or cause inflammation in or around the spinal cord (spinalabscess). The infections—some of which resulted in death—developed as a result of prolonged drug delivery through an IV or the use of antibiotics.
  • Inappropriate antibiotic use, which promotes antibiotic resistance.
  • A delay in diagnosing and treating the real cause of sometimes-disabling symptoms, which might be attributable to such conditions as rheumatoid arthritis, fibromyalgia, bursitis, or depression.
  • Catheter-associated blood clots and allergic reactions, which can also occur with IV use.

Tricky to diagnose, but easy to treat

Most ticks that can spread Lyme disease aren’t infected with B. burgdorferi. Those that are must be embedded in your skin for at least 36 to 48 hours to transmit the infection. If infection occurs, symptoms typically appear within three to 30 days of a bite. The telltale sign is a “bull’s-eye rash,” an unusual expanding ringed rash called erythema migrans, which occurs in about 70 to 80 percent of people with Lyme disease. Other typical symptoms include flulike fatigue, joint pain, headaches, and temporary facial paralysis. If not treated, the infection can spread to the joints, nervous system, and heart.

Late Lyme disease—not to be confused with chronic Lyme disease—is a result of the Lyme bacteria spreading to disparate areas in the body if the disease isn’t treated or is treated inadequately. Symptoms may not appear until months or years after a tick bite. Arthritis—in the form of bouts of pain and swelling in a few large joints, especially the knee—is a hallmark characteristic of late Lyme disease.

Neurologic symptoms, such as numbness in the arms and legs or problems with memory or thinking, may also appear. An abnormal heart rhythm is a less common problem. As with early Lyme disease, late Lyme disease is best treated with antibiotic therapy.

How to Prevent Tick Bites

If you spend time outdoors in areas where ticks are present, follow these tips to prevent bites that may transmit Lyme disease.

Chronic Lyme: a controversial diagnosis

Some patients infected with Lyme disease suffer chronic symptoms, such as fatigue, joint pain, and cognitive impairment, after a course of antibiotics. A diagnosis by an ill-informed doctor or misleading information on the Internet may have convinced them that they have chronic Lyme disease. Some patients are diagnosed with the condition even if they’ve never tested positive for B. burgdorferi.

While so-called Lyme-literate medical doctors, or LLMDs, are convinced that chronic Lyme disease is a legitimate condition, clinical practice guidelines from U.S. medical societies don’t recognize chronic Lyme disease as a diagnosis—and they recommend against prolonged antibiotic therapy and other unorthodox treatments.That doesn’t mean patients’ symptoms and suffering aren’t real, of course—they are. But there are good reasons to be skeptical that the cause is chronic Lyme disease. One reason is that prolonged oral or IV antibiotics haven’t been shown to help those patients. Nor do a host of so-called alternative therapies, including probiotics, hyperbaric oxygen therapy, energy therapy, and stem-cell transplants, all of which have been touted—and in some cases aggressively marketed—to treat chronic Lyme disease.

What to do

If you’ve been diagnosed with chronic Lyme disease or a doctor wants you to take a prolonged course of antibiotics, get a second opinion. The best place to go is a university-based medical center, which has the resources to test for other conditions that may be causing your symptoms. As the latest report from the CDC points out, such treatments won’t help and can do serious, even life-threatening harm.

This article first appeared in the June 2018 issue of UC Berkeley Health After 50.

Also see Lyme Disease: Your Protection Plan.