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5 Myths and Truths about Chronic Lyme Disease


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Few diseases are surrounded by more misinformation than Lyme disease.

chronic lyme disease
The risk of chronic Lyme disease isn’t limited to forested or rural areas. iStock/jwilkinson

Despite scientific evidence demonstrating the disease’s growing prevalence and tenacity, clinicians and policymakers continue to promote outdated Lyme disease statistics, screening methods, and treatment strategies, resulting in thousands of undiagnosed and undertreated patients. Read on to learn five dangerous myths about chronic Lyme disease and what the latest scientific research has to say instead.

Did you know that you could be at risk for Lyme disease anywhere in the U.S. (not just on the East Coast)? Learn more about this commonly misunderstood disease. #functionalmedicine #chriskresser

Chronic Lyme Disease and Ticks: What You Need to Know

Lyme disease is a multisystem infectious disease caused by several strains of the bacteria Borrelia burgdorferi and transmitted through the bite of a tick. In the United States, the Western blacklegged tick (Ixodes pacificus) is responsible for spreading the disease along the West Coast; the Eastern blacklegged tick, or deer tick (Ixodes scapularis), spreads the disease on the East Coast and in the Midwest.

While currently believed to be free of Lyme-carrying ticks, Colorado, Wyoming, Montana, and other states in the western United States are home to ticks harboring other infectious organisms. The Rocky Mountain wood tick (Dermacentor andersoni) and American dog tick (Dermacentor variabilis) spread tularemia, Q fever, Rocky Mountain spotted fever, and human monocytic ehrlichiosis in these regions. While not a vector for Lyme disease, the lone star tick (Amblyomma americanum) is also a growing concern in the southeastern and midwestern United States due to its involvement in the spread of multiple Lyme-like illnesses and its role in the development of red meat allergy. (1)

In addition to the increasing number of tick vectors, research suggests that Borrelia burgdorferi is not the sole bacterial cause of Lyme disease. A close relative of B. burgdorferi, Borrelia miyamotoi, was recently identified and may contribute to a proportion of Lyme disease cases, though there are currently no blood tests capable of detecting it. (2, 3, 4, 5) Borrelia hermsii, spread by hard-body ticks, is also a recent addition to the list of potential Lyme-causing agents. (6) Researchers believe that there are over 60 strains of the Borrelia bacteria in the United States and over 300 worldwide. Some of the best-known European strains include B. afzelii and B. garinii.

In addition, ticks can carry additional coinfections such as Babesia, Bartonella, and Rickettsia species, as well as viruses like the Powassan, Heartland, Bourbon, and Colorado tick fever viruses.

As you can see, Lyme disease is not a clear-cut condition. The lines between specific disease-carrying ticks and the harmful microbes they carry are quickly blurring, making Lyme disease and other tick-borne illnesses a growing concern throughout the United States.

A Brief History of Lyme Disease

Lyme disease is one of the fastest-growing infectious bacterial diseases in the United States. (7) Early case reports of Lyme disease first began to emerge in the late 1960s and 1970s. However, it wasn’t until 1975, when a group of people in the Connecticut towns of Lyme and Old Lyme came down with an odd assortment of symptoms—including fatigue, arthritis, and neurological dysfunction—that the medical community took note. Their investigations ultimately led to the discovery that all afflicted patients had experienced tick bites; the condition became known as Lyme disease, a tick-borne illness. In 1981, scientist Willy Burgdorfer discovered the causative agent of Lyme disease, a spirochete that came to be known as Borrelia burgdorferi.

Since its discovery, Lyme disease has remained controversial, dividing the medical community into two distinct camps. One camp argues that Lyme disease is mainly a problem on the East Coast, is easily treated with antibiotics, and does not cause persistent symptoms. The other camp cites evidence demonstrating the expanding range of Lyme-carrying ticks and Borrelia burgdorferi’s ability to evade the immune system and persist in many patients, advocating for increased awareness of the disease and better diagnostic and treatment methods. I definitely fall into the second camp.

Dr. Sunjya Schweig, an expert in complex chronic illnesses, has been working on building a symptom- and data-tracking platform (Clyme Health) to help patients with Lyme disease and other complex illnesses. Lyme disease patients have multiple, extremely complex, multilayered symptoms that need better data solutions. The goal is to harness the power of collaboration, citizen science, and data for Lyme disease research. His goal is to be able to generate clinically useful data visualizations for patient and clinician communication and shared decision-making.

Five Myths and Misconceptions about Lyme Disease

The medical community has long subscribed to the portrayal of Lyme disease as an uncommon condition, easily diagnosed and treated with drugs, and unworthy of significant attention. However, the latest scientific evidence paints a very different picture, thoroughly debunking five of the most harmful Lyme disease myths.

Myth #1: Lyme Disease Is Uncommon

For years, health authorities have suggested that Lyme disease only afflicts an unfortunate but tiny fraction of the population. However, strong epidemiological evidence directly contradicts this misconception. There are over 300,000 new cases of Lyme disease each year. (8) While impressive, this number vastly underestimates the true prevalence of Lyme disease due to underreporting, inaccurate testing, and the fact that many patients with suspected Lyme disease undergo treatment without testing.

The number of people who receive an accurate Lyme diagnosis, undergo treatment, yet continue to be sick post-treatment is even more shocking; data collected beginning in 2016 indicates that this form of persistent Lyme disease, referred to as post-treatment Lyme disease (PTLD), afflicts up to 1.5 million people. (9) The prevalence of PTLD is only continuing to rise, with nearly 2 million people predicted to be affected by 2020. (10) Clearly, Lyme disease is anything but uncommon.

Myth #2: You Can Only Get Lyme Disease on the East Coast

While Lyme disease was first discovered in Lyme, Connecticut, it is not limited to the East Coast. The ranges of the Western and Eastern blacklegged ticks, as well as other illness-carrying tick species, are rapidly spreading expanding for several reasons:

  • Human encroachment on natural areas: increasing development of natural areas into subdivisions is bringing humans into closer contact with tick habitats.
  • State lines don’t stop ticks: infected ticks are easily carried across state lines by migratory birds, deer, and traveling people and pets.
  • Climate change: lengthening warm seasons are extending the lifespan of ticks, giving them more time to infect wild animals and humans and expand their home range. (11, 12)

When we consider all the ways that ticks can travel and come into contact with humans, it’s inconceivable that Lyme disease could be limited to just the East Coast. That’s truly outdated thinking.

Another misconception is that Lyme disease can only be contracted from ticks in forested or rural places. Mounting evidence directly contradicts this myth, as ticks are increasingly recognized as important infectious vectors in urban and suburban areas. Ticks hang out in suburban backyards and city parks just as readily as they do in national parks and state forests. (13, 14) In Europe, where Lyme disease is also a significant problem, a similar risk of Borrelia infection is found in “highly developed” (urban and suburban areas) and “low-developed” (rural) areas. (15) It is likely that such a scenario also exists in the United States.

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Myth #3: Lyme Disease Can Be Treated Effectively with Antibiotics and Doesn’t Persist

The Centers for Disease Control and Prevention (CDC) and other major health organizations suggest that most cases of Lyme can be treated successfully with a few weeks of antibiotics. (16) Increasingly, however, there is research that says otherwise, indicating that a single course of antibiotics does not work for many Lyme patients; in these people, resilient B. burgdorferi survives treatment and persists for months or years, morphing into chronic Lyme disease.

Borrelia successfully evades antibiotic treatment by manipulating innate and adaptive immunity, effectively “hiding” from the immune system and establishing a long-term presence in the body. (17) However, promising preclinical research suggests that a combination of several antibiotics, including daptomycin, doxycycline, and ceftriaxone, is more effective than a single antibiotic for eradicating persistent Borrelia. (18) Still, the fact remains that the discovery of one “cure” for all cases of Lyme disease is unlikely, due to the complexity of the disease. This is why a Functional Medicine approach to the treatment of Lyme disease is so beneficial.

Myth #4: Lyme Is the Only Disease We Need to Worry About from Ticks

Borrelia burgdorferi in ticks is not the only infectious organism we need to worry about. Ticks harbor a diversity of microorganisms—a single tick bite potentially transmits dozens of pathogens, including other types of bacteria, parasites, and viruses. (19, 20) Some of the most common coinfectious organisms include Bartonella, Ehrlichia, Babesia, Mycoplasma, and Chlamydia pneumoniae. Rickettsiae, a genus of gram-negative bacteria, also co-occur with Borrelia in ticks and may be partly responsible for the extreme persistence of Lyme disease. (21, 22)

Fascinatingly, the co-occurrence of other microbes in the Eastern blacklegged or deer tick (Ixodes scapularis) increases its ability to acquire and transmit Borrelia burgdorferi, making it more virulent. (23) Lyme coinfections also compromise immunity, leading to an increased risk of infection with opportunistic and pathogenic bacteria, yeasts, and mold.

Myth #5: Conventional Testing for Lyme Disease Is Accurate

There are numerous problems with our current model of Lyme disease testing. The first issue is that some doctors will only order a Lyme disease test if their patient recalls experiencing a tick bite or the characteristic bull’s-eye rash (erythema migrans) caused by Borrelia burgdorferi. However, many people with Lyme disease don’t recall a preceding tick bite (some of the most highly infected ticks are literally the size of a poppy seed) and, in around 20 to 30 percent of cases, the bull’s-eye rash doesn’t appear. (24, 25) In fact, the bull’s-eye rash is even less prevalent on the West Coast due to variations in the bacterial strains. This narrow approach by clinicians leads to untold numbers of undiagnosed, chronic Lyme disease cases. However, the problems only start there.

When doctors do test patients for Lyme disease, they typically follow the CDC guidelines, which call for two-tiered testing using the ELISA and western blot techniques. The ELISA (enzyme-linked immunosorbent assay) measures levels of antibodies against Borrelia burgdorferi. According to the CDC, if an ELISA for Borrelia burgdorferi is negative, no further testing for Lyme disease is needed. If the ELISA is positive, a western blot is recommended to confirm the presence of disease.

Like the ELISA, the western blot tests for antibodies to B. burgdorferi. However, it also reports reactivity to 10 different proteins found in the bacterium; five of the bands must be positive to produce an overall positive result. The western blot has several problems. Because it uses antigens from cultured strains of Borrelia, not clinical specimens, it does not pick up on many naturally occurring strains of Borrelia that cause disease. Aspects of the western blot methodology, such as slight variations in the concentrations of reagents used, can also alter test outcomes and produce false negatives.

The combined sensitivity of the CDC’s two-tiered testing strategy in the early stages of Lyme is low, at approximately 30 to 40 percent. (26) Testing sensitivity tends to improve for the later stages of Lyme disease—but by that point, many people are already experiencing significant harm. (27)

How to Get Help for Chronic Lyme Disease

If your ELISA and western blots come back negative but you still suspect Lyme disease, an IGeneX test may be worthwhile. IGeneX offers a panel of Lyme disease tests, including the ImmunoBlot, for detecting B. burgdorferi at all stages of the disease process. The ImmunoBlot, designed to be used in place of the western blot, has superior sensitivity for a broad range of Borrelia-specific antigens. (28, 29)

Another company offering innovative alternatives to the ELISA and western blot is ArminLabs, located in Germany. While the ELISA and western blot test for the presence of antibodies to B. burgdorferi, ArminLabs’ EliSpot test assesses the T-cell immune response; it thus reflects current Lyme disease activity and becomes negative when B. burgdorferi is no longer active, making it useful for detecting persistent chronic Lyme disease infection and monitoring treatment. ArminLabs also offers tests of NK cell function, an indicator of immune suppression caused by chronic Lyme disease, and more sensitive alternatives to the standard ELISA test.

Another option is to work directly with a health team that’s prepared to deal with a chronic condition like Lyme disease—and that’s where the California Center for Functional Health comes in. We offer a membership-based health transformation service, and our care team is ready to provide you with the tools and support you need to reclaim your health. Find out how we can help you.

For more resources on Lyme disease:

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