August 17, 2017
12 min read

Confronting the misnomer of ‘chronic’ Lyme disease

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Studies suggest that around 300,000 people are diagnosed with Lyme disease each year in the United States, according to the CDC, with 14 states in the Northeast and upper Midwest accounting for 96% of reported cases. As the most commonly reported tickborne illness in the country, Lyme disease has grown in incidence and expanded beyond its historically endemic range in the last 2 decades.

The CDC estimates that 70% to 80% of patients with Lyme disease develop the telltale erythema migrans rash, but some patients may exhibit only symptoms of fever, fatigue or muscle/joint pain, which leaves physicians to piece together the diagnosis after confirming whether the patient was in a Lyme-endemic area. If symptoms are vague, physicians may order a blood test. If a diagnosis of Lyme disease is confirmed, patients should be prescribed a 2- to 4-week course of antibiotics, according to current Infectious Diseases Society of America guidelines.

Photo by: Tufts Medical Center

H. Cody Meissner, MD, chief of the division of pediatric infectious disease at Tufts Medical Center, said the evidence is clear that there are no benefits from a prolonged course of antibiotics for patients with Lyme disease.

Although Lyme disease is an infection that clears following antibiotic treatment, 10% to 20% of patients experience fatigue, musculoskeletal pain and insomnia that may continue for more than 6 months after the infection has resolved. Officially known as post-treatment Lyme disease syndrome (PTLDS), the loose confederation of nonspecific symptoms associated with this condition has provided a rallying point for patients with similarly vague symptoms seeking a concrete diagnosis.

Many patients whose symptoms overlap heavily with those of PTLDS, including fibromyalgia and chronic fatigue syndrome, have adopted the term “chronic” Lyme disease for their condition, although no research has definitively proven that infectious organisms persist in patients. Communities of patients and patient advocates claim that their symptoms are the result of a persistent Lyme disease infection that has gone undiagnosed, even though many of these patients show no objective evidence of a previous infection.

Compounded by misinformation shared through internet forums, “chronic” Lyme disease has become a new fixture in the debate largely between patients and providers regarding medically unexplained symptoms. To explore this phenomenon and how it fits into the health care landscape, Infectious Disease News spoke with several infectious disease and Lyme disease specialists about the pervasive misnomer of “chronic” Lyme disease, the furor of the Lyme community, and how physicians can better prepare themselves for treating patients with medically unexplained symptoms.

The rise of ‘chronic’ Lyme

First diagnosed in Connecticut in 1975, Lyme disease remained an etiologic mystery until the discovery of the spirochete, a corkscrew-shaped bacterium named Borrelia burgdorferi, which is primarily transmitted through the bite of the blacklegged tick, or deer tick (Ixodes scapularis).

“Lyme disease is most common from Virginia up through northern New England, with a secondary focus inMinnesota and Wisconsin — however, the range is clearly expanding,” Paul M. Lantos, MD, MS, assistant professor of internal medicine and pediatrics at Duke University, told Infectious Disease News. “Every year, the geographical range seems to be increasing, with cases in the Midwest extending into the Dakotas and southward into Illinois. With new reports showing Lyme disease in Michigan, it appears to be filling in the gaps between the Midwest and the East. It has also expanded west through New York and Pennsylvania, north into southern Canada, and south through Virginia.”

According to the CDC, children are at particular risk for tick exposure and subsequent infection because they tend to spend more time outdoors.

“Children between the ages of 5 and 10 years have the highest incidence of Lyme disease of any age group — nearly twice as high as the incidence among adults,” Eugene D. Shapiro, MD, professor of pediatrics and epidemiology at the Yale School of Medicine and an Infectious Disease News Editorial Board member, said in an interview. “As a result, especially within the deer tick range, Lyme disease is a very common infection among children.”

However, it is the prevalence of this infection among children — coupled with the range of vague flu-like symptoms such as fever, malaise and muscle and joint pains — that have given rise to the popular belief that a persistent “hidden” Lyme disease infection is responsible for an overwhelming number of conditions with similar chronic, nonspecific symptoms.

Although the IDSA maintains that an antibiotic course of 21 days is sufficient to eradicate Lyme infection, the International Lyme and Associated Diseases Society (ILADS) — an advocacy group consisting of physicians, patients and laboratory personnel — contends that a longer course of therapy is required, and that “chronic” Lyme conditions are the result of an infection that persisted following initial antibiotic treatment.

In its alternative diagnostic guidelines for “chronic” Lyme disease, ILADS included many of the staple symptoms of PTLDS, such as musculoskeletal pain, disrupted sleep and lack of typical mental functions; however, the group also included several nebulous symptoms not customarily associated with B. burgdorferi infection, such as night sweats, sore throat, myalgia, diarrhea, jaw pain, tinnitus and vertigo.


Although the IDSA and the NIH have been careful to differentiate diagnosis and treatment for patients with well-documented Lyme disease from those who have no record of prior Lyme infection, patients and advocacy groups — most commonly for neurologic and rheumatologic diseases — have continued to point to Lyme disease as a culprit for a range of unexplained symptoms.

“The media coverage of ‘chronic’ Lyme disease is almost sensationalism, and has resulted in many people expanding upon what we recognize as Lyme disease to include symptoms that are likely not a result of the disease or even the infectious process,” H. Cody Meissner, MD, chief of the division of pediatric infectious disease at Tufts Medical Center, said in an interview.

Paul M. Lantos

“In cases of PTLDS, oftentimes there is nothing abnormal on the physical exam or laboratory values that can be used to guide us in the diagnosis; therefore, we don’t know if this subjective syndrome is any more common after Lyme disease than [after] other infectious diseases or if it occurs among people who don’t have Lyme disease,” Meissner noted. “While we recognize that these symptoms can be functionally disabling, how often do these symptoms occur in someone who does not have Lyme disease?”

Dangers of alternative therapies

When patients suffering from debilitating yet vague symptoms are unable to obtain a concrete diagnosis from their physician due to the lack of objective evidence, they may go looking for information on their own. For patients looking for answers, information on the internet can be persuasive.

“There used to be an entity called chronic mononucleosis that we used to get five times a week. I haven’t heard anybody complain about chronic mono in 15 years because those same people now have ‘chronic’ [Lyme disease], because that’s what’s on the internet,” Shapiro said.

The burgeoning online “chronic” Lyme disease community not only consists of patients who are symptomatic and Lyme disease activists, but also groups of physicians who specialize in diagnosing and treating these patients, even if those treatments have minimal scientific backing.

“‘Lyme-literate doctors’ are what the ‘chronic’ Lyme disease advocacy community calls doctors who specialize in the diagnosis and treatment of ‘chronic’ Lyme disease,’” Lantos said. “The doctors referred to as ‘Lyme-literate’ MDs often offer treatments that have not been substantiated by high-quality research. These include prolonged or unorthodox antibiotic courses, including antibiotics that are not typically used to treat Lyme disease.”

Although many “chronic” Lyme activists insist that Lyme disease is a chronic infection requiring extended duration of antibiotics, clinical trials have never borne this out. In a recent double blind, placebo-controlled trial published in The New England Journal of Medicine, Berende and colleagues demonstrated that long-term antibiotic treatment with ceftriaxone and doxycycline did not improve health outcomes among patients with persistent symptoms of Lyme disease.

“The evidence is fairly clear at this stage that there are no benefits from a prolonged course of antibiotics beyond what is generally recommended by IDSA guidelines,” Meissner said.

Such treatments are not only unsubstantiated, they can carry serious — even life-threatening — risks, according to a recent CDC report that outlined cases of septic shock, osteomyelitis, Clostridium difficile colitis and paraspinal abscess resulting from treatments for “chronic” Lyme disease, including extended courses of antibiotics.

“Whatever the explanation, PTLDS is not responsive to additional antibiotics, which, unfortunately, has led to some very unorthodox therapies that physicians are trying to discourage,” Meissner said.

Among the more inexplicable therapies for Lyme disease was “malariotherapy,” according to Sunil Sood, MD, professor of pediatrics at Hofstra Northwell School of Medicine and a pediatric infectious disease specialist with Cohen Children’s Medical Center.

“This involved injecting malaria parasites into their blood to induce a fever that could reach up to 106°F, purportedly to ‘burn off’ the Borrelia bacteria in their brain,” Sood said. “After this practice came to the attention of the CDC about 25 years ago, physicians have been encouraged to report cases of self-induced malaria.”

In a 2015 study published in Clinical Infectious Diseases, Lantos and colleagues identified more than 30 alternative therapies marketed for the treatment of “chronic” Lyme disease, including hyperbaric oxygen therapy, ultraviolet light therapy, herbal remedies, modified diet and vaginal or anal infusions of ozone. Although these types of treatments may be supported by personal anecdotes and the recommendation of “Lyme-literate” doctors, “there is no evidence that these are in any way beneficial,” Shapiro said.

“What drives patients to seek alternative explanations is the sense that the conventional medical community cannot offer them anything or that no one will listen to them,” Lantos said. “This sense of futility is one of the things that drives patients away from infectious disease physicians, and conventional medicine in general, and probably lies behind the growth of the anti-vaccine movement and other alternative viewpoints.”

Off the map

Medical misinformation is further reinforced by the vast network of support groups for “chronic” Lyme found nationwide — regardless of whether Lyme disease is endemic to the area.

According to the Lyme Disease Network, every state except Nebraska hosts at least one support group. California, an area not typically affected by this disease, features 29 support groups available to those with “chronic” Lyme disease — the highest concentration of Lyme support groups demonstrated in any state.

“Part of the ‘chronic’ Lyme problem is that physicians ignore the epidemiology of Lyme disease,” Sood said. “All one needs to do is look at the CDC map to observe the prevalence of Lyme disease — unless a patient has traveled to or had significant exposure in an endemic area, Lyme disease will not occur.”


That endemic range, however, could be changing. In 2016, Rebecca Eisen, PhD, from the CDC’s Division of Vector-Borne Diseases, and colleagues published a study in the Journal of Medical Entomology that found that the blacklegged tick has experienced a population explosion within the past 20 years, doubling its established range. After compiling state and county tick surveillance data, researchers found that the blacklegged tick and its close relative, the western blacklegged tick (Ixodes pacificus), could now be found in approximately 49% of counties across 43 U.S. states.

However, Eisen said in a press release that although their surveillance map showed a wide distribution of ticks, “the risk of people getting Lyme disease is not equal across areas of the country.”

Sunil Sood

Primary care providers are on the front line of Lyme disease, whether confirming a diagnosis and administering treatment, or providing additional counsel or referrals for parents of children whose chronic symptoms do not match the standard criteria for Lyme disease.

“For primary care providers in endemic areas, staying current with the literature is essential because the bulk of Lyme disease referrals — either for unambiguous Lyme disease or chronic symptoms attributed to Lyme disease — are showing up in the [physician’s] office before they make their way to the infectious disease specialist,” Lantos said.

For clinicians within newly established blacklegged tick ranges, educational offerings through the American Academy of Pediatrics’ Red Book, as well as an abundance of nationwide seminars, are available to familiarize themselves with potential disease vectors in their area as well as how to efficiently diagnose the early symptoms of Lyme disease.

“Chronic” Lyme and its assortment of ill-defined symptoms is not a new phenomenon but rather the most recent catchall term for symptoms with no clear cause. According to Lantos, over time, patients have attributed their symptoms to Lyme disease, mononucleosis and chronic candidiasis.

“What these patients want is a diagnosis. However, what often happens is that the subspecialist will say they do not have Lyme disease, but what the patient hears is that they are making it up or it is all in their head,” Shapiro said. “A better approach for physicians is to be empathetic: Say that you are going over everything and that you think it is highly unlikely that what the patient has is Lyme disease. Be up front that you don’t know the cause of the symptoms, but it is unlikely to be something dangerous; highlight that what is important is to figure out how best to manage the symptoms — whatever the cause — and get the patient back to normal life.”

‘Consider all possibilities’

In a study published in Mental Health in Family Medicine, Edwards and colleagues found that symptoms such as chest pain, fatigue, dizziness, headache, swelling, back pain, shortness of breath, insomnia, abdominal pain and numbness accounted for 40% of all primary care visits. However, physicians identified a biological cause for these symptoms in only 26% of patients.

Atypical persistent symptoms of Lyme disease may include mood disorders such as depression, although a recent study published in Clinical Infectious Diseases found that the prevalence of depressive symptoms was similar among infected and noninfected patients at a tertiary care center, suggesting that physicians should not rely on mood disorders to diagnose Lyme disease, researchers said.

Many patients become labeled with Medically Unexplained Symptoms (MUS), which can have a variety of different causes.

“I believe that many of the patients who claim to have ‘chronic’ Lyme disease do have the symptoms of which they are complaining, but the cause is not Lyme disease,” Shapiro said. “Our understanding of MUS is clearly imperfect, and unfortunately, it is likely due to a combination of factors, such as genetic predispositions and/or psychological components. The problem is that most infectious disease specialists, and doctors in general, are not well-trained in managing symptoms without a diagnosis.”

In a 2014 BMC Family Practice survey of patients who identified themselves as having “chronic” Lyme disease, Ali and colleagues observed that patients were frequently unsatisfied with care in conventional settings. Patients reported that although conventional physicians were often dismissive of their diagnosis and responded to their inquiries with patronizing or condescending attitudes, consultations with “Lyme-literate” MDs or complementary and alternative medicine practitioners were reported to be optimistic and supportive.

“I don’t blame people for getting caught up in the myth that there are two universes out there: one of doctors who don’t ‘believe’ in ‘chronic’ Lyme disease, and the other of doctors who are ‘chronic’ Lyme advocates and will actually help them,” Sood said. “Certainly, the physicians who diagnose ‘chronic’ Lyme disease exhibit a whole lot of empathy for their patients. The problem is that their alternative therapies are not based on scientific fact and can cause long-term harm.”

Furthermore, alternative physicians or “Lyme-literate” doctors who rush to label patients with “chronic” Lyme disease based on symptoms without performing a more thorough patient analysis may ultimately miss the root of the patient’s problem.

“If a physician has a patient with well-documented, properly treated Lyme disease — with the acute illness resolved — and then the patient presents with vague symptoms, it is incumbent on the physician to consider all possibilities that might be causing these symptoms, such as depression or thyroid disease,” Meissner said. “The physician should ... order appropriate tests to rule out other possible causes for these symptoms.”

Although there remains considerable controversy between the medical community and advocacy groups over the prevalence and diagnostic criteria of Lyme disease, physicians continue to treat patients who claim to have a “chronic” Lyme diagnosis. According to Lantos and Shapiro, the focus should not be on the name associated with these symptoms but rather on the patient and their needs.

“When we are referred patients for Lyme disease, I don’t think we are doing our job if we make ourselves only adjudicators of a Lyme disease diagnosis,” Lantos said. “Some patients come to our office primarily concerned that they have Lyme disease; as with any other new consultation, however, our job should be to take a step back, perform the best clinical evaluation and determine the best medical explanation. In some cases, Lyme disease is the best explanation and in other cases it is not.”– by Katherine Bortz and Gerard Gallagher

Disclosures: Lantos, Meissner, Shapiro and Sood report no relevant financial disclosures.