Lyme disease is an infection caused by the Borrelia burgdorferi bacteria. This bacterium is typically carried and transmitted by ticks — namely the deer tick in North America. When it manifests in symptoms, Lyme disease initially causes a localized rash, headache, fever, joint pain, extreme fatigue and muscle pain. As it progresses, however, it can cause whole body rash, neck stiffness, pain and numbness throughout the body, swelling and unusual immune system activity. If allowed to go untreated, Lyme disease can eventually lead to Lyme arthritis.
Fortunately, Lyme disease is treatable with antibiotics. Once the course of antibiotics is complete, infected individuals usually experience a full and rapid recovery. However, some people continue to experience symptoms long after treatment ends. When this happens, researchers and healthcare professionals refer to the condition as “chronic Lyme disease.”
Chronic Lyme disease occurs when a person who has undergone antibiotic therapy for Lyme disease continues to experience symptoms long after taking the last dose. Doctors and researchers may also refer to the condition as “post-treatment Lyme disease” or “post-Lyme disease syndrome.”
Researchers are unsure of why some people continue to experience symptoms after completing antibiotic therapy while others do not. However, the numbers indicate that it is not all that uncommon. According to several journals, as many as 10% to 20% of persons treated for Lyme disease have symptoms that persist for six months to a year after completing therapy, with some experiencing symptoms for even longer. In addition to being uncomfortable or even painful, these symptoms often interfere with individuals’ normal activities and may cause emotional distress.
Researchers are unclear, still, about what causes chronic Lyme disease or, more specifically, why some people develop it and others do not. However, they do have a few theories, each of which has its merits:
None of these theories is fully supported by research. Rather, they remain hypotheses that researchers continue to explore until more concrete answers emerge.
The symptoms of chronic Lyme disease often resemble of those of middle- to late-stage Lyme disease. Those include but are not limited to the following:
In as many as 15% to 40% of cases, inflicted persons develop neurological disorders, including hallucinations. In extreme cases, the symptoms of chronic Lyme disease can be deadly. For instance, some patients develop what doctors have dubbed “Lyme carditis,” which is inflammation of the heart.
If you or a loved one live with chronic Lyme disease, you may wonder why treatment did not work for you as it has for so many others. Unfortunately, as for the occurrence of Chronic Lyme disease itself, researchers do not have any clear-cut answers. However, they do have theories.
The first is that people are at greater risk for post-treatment Lyme disease if they are bit by a diseased tick. The second theory is that the longer the disease is present in the body, the more resilient it becomes. If an infection is allowed to progress to the late stage, symptoms have a greater likelihood of persisting for weeks, months or even years after the initial tick bite.
The third theory is that people are at a higher risk of developing long-term symptoms if they choose not to seek treatment. This is the most likely theory. However, it is important to note that even people who do receive antibiotic treatment can still develop chronic Lyme disease. In fact, it is for this reason that the illness is also called “post-treatment Lyme disease.”
The bottom line that both risk factors and causes of chromic Lyme disease are unknown. As a result, there is no real way to prevent it.
Lyme disease in and of itself is not particularly dangerous or deadly. However, persistent symptoms can take a toll on a person’s mobility, comfort, cognitive abilities and eventual mental health. It can also require extreme lifestyle changes, which may only worsen emotional well-being.
It is not uncommon for persons with chronic symptoms and no answers to seek out experimental treatments. While experimental therapies have their merits, some may be dangerous. For this reason, you should never enroll in experimental therapies without first discussing the risks with your doctor, doing your homework and consulting with members of your support system.
The symptoms of chronic Lyme disease can be both debilitating and worrisome. For this reason, infected individuals are often dogged in their pursuit of answers. Though health professionals may not be able to make a diagnosis based on a description of symptoms alone, they can use blood tests to diagnose the disease. Blood tests can identify which antibodies are in your blood stream and in what levels.
The most common test for detecting Lyme disease is the enzyme-linked immunosorbent assay (ELISA) test. The Western blot test is the second most common and is often used to confirm the results of ELISA. Most health centres administer these tests at the same time.
Though these tests can reveal infection, they often cannot determine what is causing the ongoing symptoms. For more accurate answers, doctors may test specific affected areas to determine both the extent of the damage that has occurred and identify a reasonable cause. Tests they may use include the following:
In its early stages, Lyme disease is easily treatable with a two- to three-week course of antibiotics. The most commonly prescribed antibiotics for the Lyme-causing bacteria include amoxicillin, doxycycline and cefuroxime axetil. Though oral antibiotics are often enough to combat the disease, some patients may require intravenous medications.
Once Lyme disease progresses into chronic Lyme disease, however, treatment is not so straightforward. For starters, because the cause of the condition remains unknown, researchers struggle to identify appropriate treatments. Some professionals champion the use of ongoing antibiotics. However, findings have shown that continued antibiotic use not only does not improve outcomes but also, can cause complications.
As of now, treatment for post-treatment Lyme disease focuses on managing symptoms, alleviating pain and increasing comfort. Doctors may recommend over-the-counter pain relievers or prescribe more potent drugs or steroids. They may also suggest lifestyle changes that can help alleviate symptoms and manage the condition.
Though living with chronic Lyme disease can be scary, the good news is that the symptoms do not last forever. Most people who develop this more serious condition go on to recover within six months to a year. Individuals whose symptoms do persist for longer than a year eventually recover in full.
That said, Mayo Clinic does state that a small number of people experience symptoms for the rest of their lives. Some such symptoms include fatigue, muscle aches and joint pain. These persistent symptoms, however, may be the result of other, undiagnosed conditions and not necessarily Lyme disease.
Lyme disease may not be deadly, but it can cause considerable discomfort, inconvenience and emotional turmoil for infected individuals and their families. For this reason, the best way to prevent ongoing complications is to seek medical care as soon after the initial tick bite as possible. If you were bitten by a tick — especially a blacked-legged or deer tick — schedule a visit with your primary care provider. If possible, bring the tick in a sealed container along with you.
Unfortunately, it is not uncommon for tick bites to go unnoticed until a person begins to present symptoms. If this is the case with you, remain vigilant for symptoms characteristic of early-stage Lyme disease. These typically include the following:
If you develop one or more of these symptoms, and if there is any possibility that you could have been bitten by a Lyme-carrying tick, schedule a visit with your doctor right away. The earlier you start antibiotics, the less likely you are to develop chronic Lyme disease.
Chronic Lyme disease is simply a name used to describe the lingering symptoms of Lyme disease post-treatment. The symptoms of post-treatment Lyme disease are usually the same as those present in stages two and three of the initial disease and, though uncomfortable, do not grow worse.
If you live with the symptoms of chronic Lyme disease, schedule a visit with your doctor right away. Let him or her know about any travelling you have done, especially if you visited regions in which the black-legged or deer tick are rampant. If you were bit by a tick in recent months, share this information.
Chronic Lyme disease is an ongoing focus for researchers and healthcare providers alike. While there is currently no cure, doctors do have tips for managing the condition and ensuring your utmost comfort until you recover in full.