An expert lays out the facts on so-called chronic Lyme.

By Rafal Tokarz, PhD
Updated May 31, 2018
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In this excerpt from his new book, The Everything Guide to Lyme Disease, Rafal Tokarz, PhD, associate research scientist at the Center for Infection and Immunity at Columbia University, explains the debate over "chronic Lyme disease."

Among the most mysterious and troubling aspects of Lyme disease is that some symptoms of this disease can continue even after treatment. Ideally, you’d expect that getting a Lyme disease diagnosis and following it up with an antibiotic treatment would cause all of your disease symptoms to subside. This, unfortunately, is not the case for all people with Lyme disease. A number of patients treated for this illness continue to have persistent symptoms, in some cases for years after treatment.

This condition, called post-treatment Lyme disease syndrome, has been perplexing doctors for years. What causes it? Why do some patients develop it, while others don’t? And what can be done to cure it? Unfortunately, the answers to these questions are not clear. The lack of understanding of this condition, coupled with a lack of treatment options, has given rise to alternative beliefs that question what Lyme disease really is. Over the years, these beliefs have fueled a large number of controversies associated with this illness. The main dispute lies in the existence of a condition called “chronic Lyme disease” and how it actually relates to Lyme disease.

Post-treatment Lyme disease syndrome

In the majority of cases, if you receive a diagnosis of Lyme disease and begin treatment in the early part of the disease, your symptoms will go away within a few weeks without any long-term complications. Unfortunately, a quick diagnosis and antibiotic treatment does not guarantee an immediate return to health for everyone afflicted with Lyme disease. In some rare cases, you may continue to have symptoms even after you complete antibiotic therapy.

The types of symptoms that you may have can vary, but usually consist of fatigue, joint pain, and muscle aches. They often also include a variety of mental conditions, ranging from minor difficulties, such as an inability to concentrate, to severe problems like depression. Adding to the confusion, the timing of these symptoms can be inconsistent as well, occurring constantly in some patients while only sporadically in others. If you continue to have these symptoms after you’ve completed your antibiotic treatment, and they persist for at least six months, you have a condition called “post-treatment Lyme disease syndrome” (abbreviated to PTLDS). In some cases, this condition has been shown to continue for more than 10 years.

How frequent is PTLDS?

PTLDS is a confusing and complex disorder. To use a rough estimate, approximately 10% to 20% of patients with Lyme disease may develop PTLDS, though some suggest that those numbers are far too low. In some communities, especially ones where Lyme disease is not diagnosed quickly, PTLDS may affect up to 50% of Lyme disease patients. Because many of the studies looking at PTLDS see such a wide range of symptoms, it has been very difficult to truly determine how frequently this condition occurs.

Cause of PTLDS

What causes PTLDS? The answer to that question has been eluding scientists for nearly 30 years. The short answer is nobody knows. If this syndrome was caused by B. burgdorferi [the bacteria that cause Lyme disease], finding the bacteria while the person has symptoms of PTLDS would be proof of its involvement.

However, doctors and scientists haven’t been able to do this with PTLDS. Because PTLDS is, by definition, post-treatment, B. burgdorferi should have been eliminated and the bacteria would not be in your system. In fact, if you do have an ongoing infection with B. burgdorferi, you couldn’t be diagnosed with PTLDS. During PTLDS, whatever damage may be occurring, an active infection with live B. burgdorferi is not believed to be the cause.

(There is the possibility that B. burgdorferi does in fact survive after antibiotic treatment in extremely low numbers undetectable by modern science. Trying to find proof of the presence of these bacteria is extremely difficult, but is currently an area of active research.)

Although it is not clear how and why PTLDS occurs, scientists do have an idea of a few potential risk factors that make it more likely for someone to develop this condition. The biggest risk factor appears to be a delay in getting diagnosed with Lyme disease, which means a later start for antibiotic treatment. There is also a link to how severe your symptoms are when you’re first diagnosed. Patients with worse symptoms in the beginning stages of treatment appear to be more at risk for developing PTLDS. 

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Symptoms of PTLDS

PTLDS has a wide range of symptoms, from minor ones that won’t interfere with your day-to-day life to severe problems that can greatly affect your quality of life. The main symptom, which appears in nearly every patient with PTLDS, is fatigue. Just how tired a person feels can vary and can be subjective, but about half of patients with PTLDS report feeling severe fatigue which, in some cases, may leave the patient confined to bed and unable to do anything. The fatigue is usually accompanied by muscle aches and headaches as well, with about one quarter of people who get these aches rating the pain as “severe.”

More than half of PTLDS patients experience joint pain or stiffness. It’s usually felt in a particular joint, such as the knee, but can occur in any joint in your body. This becomes more intense in people who progressed all the way to Lyme arthritis before they were treated. Some other symptoms that have been reported with PTLDS include shooting pains throughout the body, neck pain, a tingling sensation, and a loss of feeling in the arms, legs, hands, and face. There is also a wide range of mental problems that come along with PTLDS, such as changes in normal behavior, mood swings, and experiencing “brain fog,” a difficult-to-explain condition that affects thought processes and involves an inability to focus along with a loss of memory or concentration.

Living with PTLDS

One of the most common complaints from patients with PTLDS is that the disease affects their daily life to some degree. Many patients with severe symptoms realize that their life is changed forever. In this new life, they have to accept that there are adjustments they will have to make in order to be able to live with their illness. Many patients are forced to give up various activities or hobbies that were part of their life prior to being diagnosed with Lyme disease. Some people are forced to give up attending various social events such as plays or ball games because they are physically unable to get through them.

Because PTLDS is a subjective illness, meaning there aren’t any obvious and visible signs or symptoms, many patients experience a lack of understanding of their condition on the part of others. Coworkers, friends, and sometimes even family members often do not recognize the profound effect of their symptoms on their everyday life. Some patients feel they lack the support system that people with more well-known diseases such as cancer can easily obtain. Other patients find that people around them have a misunderstanding of the potential severity of Lyme disease, and they don’t understand that PTLDS is a real illness where some patients don’t get well right away.

People with PTLDS can also experience a tremendous amount of doubt and stress regarding their own future, not knowing whether PTLDS will be a chronic illness they have to deal with for the rest of their life. Some patients with sporadic symptoms live in constant fear that the more debilitating ones will come back or that the symptoms will get worse over time. Some individuals find themselves in fear of the woods, afraid of acquiring new tick bites and making their illness worse. There is an increase in anxiety and some patients succumb to depression, suicidal thoughts, or both.

Patients with PTLDS frequently experience frustration with doctors who have no way of understanding and treating the subjective symptoms associated with their condition. They encounter many different opinions and treatment plans offered by many different doctors, including some doctors who disbelieve the symptoms the patients claim they have. Because of the perceived lack of help from doctors, some patients undertake stronger personal responsibility for their health. For some patients, this leads to them turning to unorthodox treatments that may not be recommended by standard physicians.

How is PTLDS identified?

The fact that B. burgdorferi or any other agent hasn’t yet been associated with PTLDS makes this illness very misunderstood and controversial. There are no signs of the disease that a doctor can observe. The illness is strictly subjective, with a wide range of symptoms reported by individual patients. One of the biggest struggles with PTLDS is simply identifying it in patients because there is no universally accepted definition for this condition.

Even worse, there are no diagnostic tests that can clearly identify whether a patient is suffering from this illness. Although scientists are constantly looking for ways to identify PTLDS through blood samples, they haven’t been able to find any yet. 

Diagnosis of PTLDS comes from the inclusion of some symptoms and factors and the exclusion of others. What does that mean exactly? Although no clear-cut definition has been given, several guidelines have been proposed that help doctors decide whether you have PTLDS. The criteria for a diagnosis of PTLDS include:

  • Evidence of prior Lyme disease. This has to be documented by either a positive Lyme disease test or a diagnosis from a doctor based on the signs and symptoms, even if you were never actually tested.
  • You need to have completed the antibiotic treatments and had some of the symptoms disappear as a result of that treatment. This means you did in fact get better to a certain degree after treatment.
  • Within six months of the initial treatment for Lyme disease, you had to begin to feel either fatigue or muscle pain, or have some cognitive problems. These symptoms had to reduce the quality of your life in some way.

In addition to the inclusion criteria, there also exists a wide array of criteria that excludes a patient from fitting the diagnosis of PTLDS. This is meant to exclude patients who, even though they may present with similar symptoms, are more likely to be affected with some other illness. In order to be diagnosed with PTLDS, you and your symptoms cannot fulfill any of the following criteria:

  • You cannot have a diagnosis of an illness with similar symptoms. For example, if you were previously diagnosed with fibromyalgia or chronic fatigue syndrome, you will be excluded. Both of these disorders have similar symptoms to PTLDS but are not believed to be related to Lyme disease.
  • You cannot have an active infection with B. burgdorferi or any other pathogen. In most cases, an active infection would likely explain your symptoms instead of PTLDS.
  • You cannot have symptoms that can be explained by your doctor. There may be symptoms that you believe are due to PTLDS that your doctor is able to diagnose as being caused by something else.
  • You cannot have a history of unexplained symptoms before you had Lyme disease. In this case, it’s likely that the current symptoms are a continuation of that earlier unknown illness.

PTLDS treatment

Unfortunately, there is no current treatment for PTLDS. Although some doctors claim that prolonged antibiotic treatment may be helpful, this is not recommended by the current treatment guidelines by the CDC.

So, what to do if you have PTLDS? In most cases, a doctor can guide you on how to best manage your symptoms and reduce their effect on your everyday life. This can include prescriptions to help relieve the pain or non-pharmaceutical ways to lessen some of the symptoms such as exercise or improved nutrition.

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Chronic Lyme disease

“Post-treatment Lyme disease syndrome” is a relatively new term. Even people living in areas where Lyme disease is common have likely never heard of it. Another term, “chronic Lyme disease,” is much more recognized and thought to mean the same thing as PTLDS. Chronic Lyme disease doesn’t follow the same guidelines as PTLDS and so it ends up having a much more general group of people claiming they have it. Whereas PTLDS represents a group of patients who were diagnosed with Lyme disease and have clear symptoms without a sign of an active infection, chronic Lyme disease is used for individuals who claim to have some sort of a persistent active infection that is difficult to detect and cure with regular antibiotic therapy.

Patients who believe they have chronic Lyme disease include a broad group of people who may suffer from a wide range of symptoms, some of which overlap with PTLDS, including chronic pain, fatigue, various cognitive problems, and behavioral changes. However, chronic Lyme disease can also overlap with a wide range of neurological and rheumatological diseases, including some that have already been described but have no known clear cause, such as multiple sclerosis or ALS, also known as Lou Gehrig’s disease.

For years, the debate over the existence of chronic Lyme disease has been the focus of immense controversy and a source of disagreement fought between the scientific Lyme disease community and many individuals in the public who claim to be suffering from chronic Lyme disease. This conflict has been going on for over 20 years and has been featured on various television news programs and started countless discussions on the Internet. It has led to a number of multimillion-dollar lawsuits, entered the realm of politics, and even resulted in Congress holding special hearings on Lyme disease. What is the root of the disagreement? If we know that Lyme disease exists, why are people arguing about it?

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The chronic Lyme disease controversy

At the center of the controversy are two sides with very different opinions about what constitutes Lyme disease. On one side are the majority of scientists and doctors, including an organization of more than 9,000 infectious disease doctors called the Infectious Diseases Society of America (IDSA). Based on all of the available clinical evidence, the IDSA has published guidelines on how to treat patients with Lyme disease. For this group, Lyme disease is defined as an infection with B. burgdorferi that can be cured with proper antibiotic therapy, although it is accepted that some people can develop PTLDS for an unspecified amount of time.

On the other side of the argument is a group that consists mostly of patient advocacy groups, led by the International Lyme and Associated Diseases Society (ILADS), some patients, and a small group of doctors. This side has adopted the term “chronic Lyme disease” as an explanation for a number of symptoms that involve nonspecific pain, constant fatigue, and various levels of neurocognitive problems.

Members of this group often refer to themselves as “Lyme literate.” They believe that Lyme disease as defined by IDSA is too limiting and does not reveal the true extent of this disease. This group has a much broader definition of Lyme disease, which includes many additional symptoms not defined by IDSA that they believe to be related to tick bites. To be diagnosed with chronic Lyme disease, a person often doesn’t need to have clear evidence of a prior infection with B. burgdorferi. In fact, many do not. This group also believes that the antibiotic treatment guidelines recommended by the IDSA are insufficient to adequately treat this condition.

However, the scientific community disagrees with many of the claims proposed by the chronic Lyme disease group, primarily because many of the theories lack any scientific evidence. Some of them have been actively disproved.

This does not mean that scientists believe that the suffering of the people who claim to have this syndrome is not real. It’s absolutely clear that many people with chronic Lyme disease do indeed suffer from some very severe and debilitating symptoms, regardless of whether it was actually caused by an infection with B. burgdorferi. There is also no doubt that in some of these people, a past infection with B. burgdorferi may indeed have been the trigger for some of the current symptoms.

What needs to be better understood is: What are the causes in the vast number of individuals where no clear evidence of Lyme disease is found? Sometimes chronic Lyme disease is diagnosed in these individuals simply by exclusion. If there is no clear explanation for your symptoms, for some doctors, Lyme disease can seem to be a likely culprit. However, a diagnosis of chronic Lyme disease can be falsely reassuring and a disservice because you are much less likely to seek an alternative diagnosis and treatment for what might actually be wrong.

Excerpted from The Everything Guide To Lyme Disease: From Symptoms to Treatments, All You Need to Manage the Physical and Psychological Effects of Lyme Disease by Dr. Rafal Tokarz Copyright © 2018 Adams Media, a division of Simon and Schuster. Used by permission of the publisher. All rights reserved.