Chronic Lyme Disease

“Although Lyme disease is a public health concern, extensive publicity has resulted in a degree of anxiety about Lyme disease that is out of proportion to the actual morbidity that it causes.”

Chronic Lyme disease: one of the more controversial topics in infectious diseases. “Chronic Lyme disease” refers to a nonspecific diagnosis without a consistent definition that has been given to patients with various generic symptoms that could be associated with infection with B. burgdorferi, but are not confirmed to be. Individuals diagnosed, either by a “Lyme literate” physician or by themselves, attribute symptoms such as fatigue and nonspecific pain to chronic Lyme.

Lyme disease is caused by the bite of an infected black-legged tick, which, if feeding on a human for >24 hours, can lead to the bacteria Borrelia burgdorferi to be deposited into the skin. The vast majority of infections are halted right there in the skin. In small proportions of cases (~20% or less), certain strains of the bacteria can escape the skin near the tick bite and spread to areas such as the joints, central nervous system, and the heart to cause symptoms of disseminated Lyme disease.

Importantly, this is a bacterial infection. These bacterial infections are treated effectively with specific courses of antibiotics.

For localized Lyme disease, the treatment is Doxycycline for 10-14 days, Amoxicillin for 14 days, or Cefuroxime for 14 days. For disseminated Lyme disease that presents as arthritis, treatment is 28 days of any of those three, or 14-28 days of IV Ceftriaxone. For disseminated Lyme disease that presents with neurological symptoms (such as facial weakness/palsy), treatment is Doxycycline for 14-21 days or IV Ceftriaxone for 14-21 days. And for the very rare instances of disseminated Lyme disease that presents with cardiac symptoms, treatment is 14-21 days of Doxycycline, Amoxicillin, or Cefuroxime for mild symptoms, and 14-21 days of IV Ceftriaxone for moderate-severe cases.

Borrelia burgdorferi do not form biofilms, ‘persister cells’, or become dormant or latent in the body and hide out from antibiotics or our immune system. Studies that claim otherwise have no conclusive evidence to present. As such, courses of these antibiotics kill all the bacteria and eliminate the infection.

These bacteria are not causing a chronic or persistent Lyme infection. In fact, even without antibiotic treatment, most infections would self-resolve (i.e. be cleared by our immune system).

There is no benefit to taking extended courses of antibiotics if someone has been led to believe they have a chronic infection, and in some instances, it can actually cause serious harm (more on this in a moment). Numerous clinical trials have investigated this and determined there is not even an improvement in quality of life with extended courses of antibiotics.

About 10% of people who had a legitimate B. burgdorferi infection report fatigue, musculoskeletal pain, and insomnia that may continue for more than 6 months after the infection has resolved.

This is NOT chronic Lyme disease – but rather, post-treatment Lyme disease syndrome (PTLDS). This term, because it is applied to a wide array of nonspecific symptoms has unfortunately provided a rallying point for people with similarly vague symptoms seeking a concrete diagnosis, whether they had Lyme disease or not.

Post-treatment Lyme disease syndrome is having persistent symptoms after antibiotic treatment has cleared the infection. These are called sequelae: conditions which are the consequence of a previous disease. In this case, sequelae refer to symptoms caused by the initial infection with B. burgdorferi, but does not mean there are bacteria still in the body. Persistent symptoms in those instances are not due to bacteria that are still in your body – it is due to sequelae as a result of tissue damage before the infection was cleared.

In addition, because so many people self-diagnose or use non-validated Lyme disease tests (many of these, direct-to-consumer) to diagnose themselves with Lyme, the number of people believing they have chronic Lyme disease is well over the true number of people that are even infected with B. burgdorferi, including in places where these bacteria and the ticks that transmit them do not even exist.

It’s important to understand that 15% of adults experience unexplained fatigue and 30% of adults experience unexplained chronic pain. Unfortunately, as these symptoms could be associated with B. burgdorferi infection (as well as a myriad of other things), these symptoms are often inappropriately attributed to ‘chronic Lyme disease’. Many patients whose symptoms overlap heavily with those of PTLDS include those with osteoarthritis, rheumatoid arthritis, degenerative diseases of the spine, neurologic diseases, including multiple sclerosis, demyelinating diseases, amyotrophic lateral sclerosis, neuropathies, and dementia, or even depression.

There is no epidemiologic evidence that these alternative diagnoses cluster in regions with high Lyme disease transmission. There is no association between diagnoses such as multiple sclerosis, amyotrophic lateral sclerosis, or rheumatoid arthritis and Lyme disease. These medical conditions do not arise concurrently with other recognized manifestations of disseminated Lyme disease (such as Lyme arthritis), and there is no quality evidence associating any of these diagnoses with infection by B burgdorferiAlthough there can be clinical overlap between Lyme disease and other conditions – meaning that there are symptom similarities, these conditions can be differentiated by each other.

Unfortunately, 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. These “medically unexplained symptoms” and associated media coverage have led to the rise of adoption of this identity of having “chronic Lyme disease”, and as a result, Lyme is used as scapegoat for many other ailments because of the non-specific symptoms and many people’s inability to notice the EM lesion (which presents within the first 1-2 weeks of infection and occurs in 60-80% of cases). This means that people may be ignoring other legitimate medical issues that are causing these generic symptoms, as they believe they have a chronic infection with B. burgdorferi instead.

More worrisome is that people who are led to believe that they do have a chronic Lyme infection end up taking unapproved and unproven treatments, which can be dangerous. There are no data that tie these physical symptoms to ongoing infection, and prolonged or repeated courses of antibiotic therapy are emphatically not recommended.

Treatments offered for chronic Lyme disease, such as prolonged antibiotic or immunoglobulin therapy, lack data supporting effectiveness and are not recommended. In fact, long-term IV antibiotics and “holistic” remedies have been associated with dangerous infections.

With regard to unapproved treatments for Lyme: “We’ve known about cases like these for quite some time, but anecdotally, we did seem to be hearing about them more frequently.” A 2015 study noted a 50% increase in long-course antibiotic therapies prescribed for Lyme disease between 2004 to 2006 and 2010 to 2012.

Doctors who provide these treatments don’t typically follow the most commonly recommended treatments and the evidence-based guidelines, and they may diagnose Lyme disease even if blood tests are negative. There is an entire fringe of clinicians who call themselves “Lyme literate” that propagate these falsehoods, and they personally profit by prescribing these unproven treatments that are not covered by insurance and are extremely costly. These clinicians typically don’t have formal infectious disease training, and unfortunately profit off individuals who are simply trying to get answers for their symptoms.

Clinicians, health departments, and patients have contacted CDC with reports of serious bacterial infections resulting from treatment of persons who have received a diagnosis of chronic Lyme disease. Many of these cases are described to illustrate complications resulting from unproven treatments, including septic shock, Clostridium difficile colitis, osteodiscitis, abscess, and death.

More than that, these types of “treatments” have no evidence behind them that they improve quality of life – many of these individuals were misdiagnosed as “chronic Lyme” when they have other medical issues: depression, MS, etc. It’s important to remember that Chronic Lyme is not a medical diagnosis.

Seeking help from alternative care providers is associated with skepticism about conventional medicine, negative perceptions of health status, and negative opinion about locus of control over one’s health, and as a result, makes those individuals susceptible to false claims about alternative therapies, even when there is no scientific evidence to support their efficacy or safety. These include psychological factors (such as hope, or wishful thinking), distaste for conventional authority figures (such as physicians) or for conventional science, and vigorous marketing by those promoting them. As this study illustrates, practitioners of unorthodox alternative therapies specifically target their marketing to the group of patients who believe they have Lyme disease.

Examples of “alternative Lyme treatments”

Oxygen therapies such as hyperbaric oxygen, hydrogen peroxide, or ozone

Energy and radiation therapies such as Ultraviolet light, Photon therapy, magnets, saunas/steam rooms, and “cold” lasers.

Metal/chelation therapies such as mercury chelation and removal, Dimercaptosuccinic acid (DMSA), Alpha lipoic acid (ALA), Removal of dental amalgam, Colloidal silver, and bismuth.

Nutritional supplements such as Vitamins C and B12, Herbs, Garlic, cilantro, Chlorella, Sarsaparilla, Andrographis, Turmeric, Olive leaf, Glutathione, and Fish oil

Biological and pharmacologic agents such as Urotherapy (urine ingestion), Enemas, Bee venom, Hormonal therapy, Cortisone, Naltrexone, Sodium chlorite (bleach), Intravenous immune globulin (IVIG), Synthetic thyroid hormone, and apheresis.

These are only a selection of things promoted to treat a supposed chronic Lyme infection. Not only are these potentially dangerous, there is no biological plausibility as to why any of these treatments would be effective to begin with.

From the CDC: Antibiotics are the only known effective treatment for Lyme disease, but a quick search on the internet will introduce you to other untested remedies that claim to cure Lyme disease or chronic Lyme disease. These products—available online or from some health care providers—may be dangerous, deadly, or simply a waste of money. (many aren’t covered by ins. b/c they aren’t medically proven).

From the Infectious Disease Society of America (IDSA): We sympathize with patients who suffer from the wide array of symptoms that have been attributed by some to be due to so-called “chronic” Lyme disease, but we are concerned that most of these patients have been improperly diagnosed and may be receiving a treatment, i.e., long-term antibiotic therapy, that will do them more harm than good.

Other credible organizations such as the American College of Rheumatology, and the American Academy of Neurology have supported these positions as well.

We at the ALDF understand that is is frustrating when you have physical symptoms that match those of Lyme with no official label to put on them, but chronic Lyme disease is likely not the answer. Please, be wary of clinicians, alternative practitioners, and even others who promote this condition, especially without exploring other medically viable alternatives.

Additional resources and discussion on Lyme disease and Chronic Lyme more broadly:

The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America

Adverse Events Associated With Antibiotics and Intravenous Therapies for Post–Lyme Disease Syndrome in a Commercially Insured Sample

Misdiagnosis of Lyme Disease

Illnesses misdiagnosed as Chronic Lyme Disease

AMMI Canada Position Statement on the Diagnosis and Treatment of People with Persistent Symptoms That Have Been Attributed to Lyme Disease

Post-Treatment Lyme Disease Syndrome

Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States

Lyme disease often misdiagnosed, resulting in unnecessary antibiotics

Antiscience and ethical concerns associated with advocacy of Lyme disease

Unorthodox Alternative Therapies Marketed to Treat Lyme Disease

A Critical Appraisal of “Chronic Lyme Disease”

Randomized Trial of Longer-Term Therapy for Symptoms Attributed to Lyme Disease

Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease

NIAID Lyme Disease Antibiotic Treatment Research

Internet-based self-diagnosis of Lyme disease caused death in a young woman with systemic lupus erythematosus

Podcast episodes on Lyme disease:

In the Lyme Light: Beyond The Tick Bite (Part One)

In the Lyme Light: Beyond The Tick Bite (Part Two)