Lyme Disease Controversies Continue

Researchers are learning more about how Lyme disease impacts the body. But controversies over how many have the disease, and how to diagnose and treat it, remain.

Lyme disease, an infection spread from the bite of a tick carrying B. burgdorferi bacteria, has been around for about 60,000 years, circulating in wildlife, according a team of Yale School of Public Health researchers. Although it’s probably been causing illness in humans for hundreds of years, the disease wasn’t identified and given its name until 1976, in Lyme, Connecticut.

Finally, people with sometimes mysterious symptoms, often including a bulls-eye shaped red rash, headache, arthritis-like pain, and heart rhythm abnormalities, had a name for what was making them feel so awful.

Almost half a century later, with several laboratory tests being used to help diagnose Lyme disease and ongoing research into the infection, you might assume medical experts have figured out what the illness does to the body, how long the infection lasts, and the best treatments.

But, despite progress, what has been called the “Lyme wars” remains: Controversies about Lyme disease are still prevalent and may be delaying the diagnosis and treatment of some people suffering from the infection.

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How many people have Lyme disease?

To begin with, nobody really knows how widespread Lyme disease is and whether it is possibly over-reported or far more cases exist than are known. The odds are the infection is likely under-reported. Here’s why.

Each year, nationwide health agencies report about 30,000 cases of Lyme disease are reported to the Centers for Disease Control and Prevention (CDC). But the CDC notes this doesn’t account for every case of Lyme disease diagnosed in the U.S. or, for that matter, misdiagnosed as something else.

Because those agencies report only a fraction of cases, CDC researchers turn to reports from labs to document how many people have tested positive for Lyme disease over the course of a year.

But lab tests may not be accurate and, besides, Lyme disease can be diagnosed with only an exam and medical history — especially when symptoms include the typical rash, and the patient has likely been exposed to a tick. So, to estimate how many people have Lyme disease in the U.S., researchers also look to insurance claims from people diagnosed with Lyme, whether or not they had lab tests for the infection.

The total the CDC has come up with for the number of annual Lyme disease cases in the U.S. is somewhere around 476,000. That figure is estimated and likely includes some people who were not actually infected, however.

Worries and controversies over testing and diagnosing

The controversy over how many people really have Lyme disease obviously involves how and when people are diagnosed with the infection. The CDC recommends a two-step testing process for Lyme disease, if a doctor decides lab tests are needed. Both steps are required and can be done using the same blood sample, and both rely on the detection of antibodies to the Lyme-causing bacteria.

The CDC updated its Lyme disease description in 2017, noting if symptoms were obvious, especially the bulls-eye red rash, doctors could diagnose the infection without lab tests.

The CDC’s position on Lyme disease, however, caused other skirmishes in the Lyme wars. Critics point out many people with Lyme disease do not have the bull’s-eye rash (they may have one in another shape or not have a rash at all), and the lab tests often produce inaccurate results (especially if the body of the infected person has not had time to mount an immune response, which usually takes at least six weeks).

“The CDC serologic definition is flawed, and the tests they recommend miss many real patients — both false negatives and false positives are rife,” says Pamela Weintraub, a science journalist who has covered Lyme disease controversies and research for more than 20 years.

“Lyme should be a clinical diagnosis based on potential for exposure and symptoms, with the test used in a more confirmatory mode but not as the ultimate decider,” emphasizes Weintraub, the author of “Cure Unknown: Inside the Lyme Epidemic” and co -founder of the Science Literacy Foundation.

The Patient Centered Care Advocacy Group added to these ongoing controversies by filing a complaint with the CDC, stating many doctors incorrectly rely on the CDC case definition to interpret lab tests and diagnose patients, resulting in large numbers of patients who are misdiagnosed as not having Lyme disease and then denied medically necessary treatment and insurance coverage.

The complaint noted Lyme disease is a clinical diagnosis, based on a patient’s medical history, symptoms, and exposure to ticks, and pointed to research showing Lyme disease diagnostic tests are relatively insensitive — meaning negative test results do not mean a person doesn’t have the infection.

In response, the CDC agreed to add a disclaimer to the surveillance case definition for Lyme disease, stating it is “not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.”

The Lyme disease treatment conundrum

Researchers and doctors agree antibiotics are critical for treating Lyme disease effectively, especially if the medications are started soon after the infection occurs. The good news is that most patients with early Lyme disease infection recover with antibiotics, according the Johns Hopkins Lyme Disease Research Center.

The Infectious Diseases Society of America, the American Academy of Neurology, and the American College of Rheumatology have issued updated guidelines on how long to continue antibiotic therapy:

• 10 to 14 days for early Lyme disease
• 14 days for Lyme carditis (inflammation of the heart caused by the infection)
• 14 to 21 days for neurologic Lyme disease
• 28 days for late Lyme arthritis

Doctors may use another course of antibiotics, the guidelines state, in patients with arthritis who haven’t improved after the first round of treatment.

But controversy remains among some patients and doctors over how long to continue antibiotics — especially in cases of people diagnosed with Lyme who continue to suffer with symptoms, sometimes severe, after lab tests show the infection has cleared. The CDC now recognizes these ongoing health problems as post-treatment Lyme disease syndrome (PTLDS).

Should people with PTLDS receive far longer treatment with antibiotics? That question remains unanswered.

Writing about the “Lyme wars” in Harvard Health, Harvard Medical School lecturer Marcelo Campos, MD, points out there is little evidence to recommend a specific length of antibiotics for people with PTLD, and National Institutes of Health-backed studies haven’t found any improvement in these patients even after months of antibiotics.

Some people with long-lasting Lyme symptoms, however, insist long-term antibiotics have helped them. On the other hand, nay-sayers claim these PTLDS patients must have been experiencing a placebo effect, Campos adds.

Lyme controversy: Are ongoing symptoms after treatment all “in the head”?

Over the years, many Lyme disease patients have reported their frustration in finding a diagnosis for their condition, especially if they did not have a bulls-eye rash. Others with PTLDS who were treated with antibiotics and still don’t feel well have been told they may be hypochondriacs when they complain of lingering symptoms like chronic fatigue and a kind of “brain fog.”

Exactly how Lyme disease can cause long-term effects is still not understood, but research shows more than 1 in 10 people treated with antibiotics still have chronic physical and neurological complaints that persist after their infection seems to be gone. And, although the CDC has officially recognized that PTLDS is real, the idea a person can have symptoms of PTLDS without objective biomarkers or specific clinical symptoms of ongoing infection remains an area of controversy.

After all, PTLD symptoms — including fatigue, brain fog, palpitations, dizziness, aches, and pain — can seem vague and are often identical to symptoms seen in many other physical and, sometimes, mental health conditions. What’s more, in most cases there is no laboratory proof the Lyme infection is still present in people with PTLDS.

Ongoing research documenting how Lyme disease can impact multiple systems in the body should eventually halt any controversy over whether the long-term symptoms some Lyme disease patients report are indeed “all in their heads.”

In fact, the brains of some Lyme disease patients may sustain ongoing inflammation from Lyme disease. Johns Hopkins Lyme Disease Research Center scientists, using an advanced form of brain scan, have found elevation of a chemical marker of widespread brain inflammation in people with lingering “brain fog” and other problems association with PTLDS, compared to healthy controls — despite the Lyme patients completing treatment with antibiotics.

The Johns Hopkins team has also discovered infection with Borrelia burgdorferi, the bacteria that causes Lyme disease, can combine with genetic susceptibility to autoimmune diseases. This may be what triggers Lyme arthritis and potentially other autoimmune-type manifestations of Lyme disease in some people.

In addition, the Johns Hopkins Lyme disease investigators have documented differences in some specific metabolites (substances made or used when the body breaks down foods, chemicals, fat, or muscle tissue) between people sick with PTLD, despite antibiotic treatment, and those clinically cured Lyme disease patients. This finding is important because it may help researchers and doctors better identify the underlying biochemistry of people with persistent Lyme disease symptoms, and hopefully help researchers find treatments.

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