Post Treatment Lyme Disease Syndrome: Causes and Treatments

MSR

Published on

June 05, 2024

Updated on

June 05, 2024

Medically reviewed by

Dr. Robert Stevens

Lyme disease, a tick-borne illness predominantly transmitted by the black-legged tick, stands as the most prevalent vector-borne disease in the United States. Each year, nearly half a million Americans are diagnosed and treated for this condition, according to the Centers for Disease Control and Prevention (CDC). While Lyme disease is generally treatable with a course of antibiotics, a significant number of patients continue to experience persistent symptoms even after the completion of their treatment. These symptoms, which can include fatigue, joint pain, cognitive impairment, and mood disorders, contribute to a condition known as Post-Treatment Lyme Disease Syndrome (PTLDS). This syndrome remains one of the most controversial and misunderstood aspects of Lyme disease, profoundly impacting patients’ quality of life. 

This article explores the complex nature of PTLDS, discussing its causes, symptoms, risk factors, and the innovative treatments available to those affected, such as neuroplasticity programs aimed at retraining the brain to better manage and potentially alleviate these chronic symptoms.

The re-origin program has helped numerous people in their healing journey from Lyme Disease. With the guidance of our neuroscience-backed brain retraining program, you can rewire your brain’s response to your Lyme Disease symptoms, thus calming your nervous system, boosting your immune system, and promoting healing. If you are interested in hearing more about our program, schedule a free info call today.

What is Lyme Disease?

Lyme Disease is a tick-borne illness that’s the most common vector-borne disease in the United States. It can lead to unexplained persistent symptoms even after antibiotic treatment, making it one of the most controversial and misunderstood infectious diseases impacting quality of life.

The Centers for Disease Control and Prevention(CDC) published findings that show each year, “approximately 476,000 people in the USA are diagnosed and treated for Lyme disease,” based on medical insurance data.1 Like many infectious diseases that are public health problems, healthcare providers can usually effectively treat Lyme disease with antibiotic treatment; it includes a two- to four-week course of either oral antibiotics, like doxycycline or amoxicillin, or intravenous antibiotics, such as ceftriaxone. Intravenous (IV) antibiotics are usually reserved for cases with neurological symptoms. 

However, after completing antibiotic treatment, 10–20%2 of patients report persistent symptoms, including fatigue, cognitive impairment, joint pain and muscle aches, and depression.

This condition is called Post-Treatment Lyme Disease Syndrome (PTLDS), also known as Chronic Lyme disease or Post-Lyme disease syndrome. These persistent symptoms can be highly debilitating and can last for months or even years, significantly impacting a person’s quality of life.

With new cases of Lyme disease expected to increase in the coming years due to global events like climate change, researchers also expect to see more people experiencing persistent symptoms even after being treated for Lyme disease.3,4,5

In this article, we examine PTLDS, its causes, symptoms, risk factors, effects, what to do should you experience a flare-up, and available treatments, including retraining your brain with re-origin’s self-directed, science-based neuroplasticity program

Where Does Lyme Disease Come From?

Lyme disease, also known as Lyme borreliosis or borreliosis, is primarily transmitted to humans through the bite of black-legged (deer) ticks infected with the bacterium Borrelia burgdorferi (b. burgdorferi). The tick bite usually occurs in woodsy areas and low-growing grasslands. The tick’s name is Ixodes scapularis.

Borrelia burgdorferi, a bacteria known to cause Lyme disease, is classified as a spirochete because of its spiral shape. It was named after Willy Burgdorfer, the scientist who discovered it in 1982. While a deer tick’s life cycle is complex and involves different animals, the deer is one of the primary hosts for adult ticks.

Validation of Lyme disease is sometimes challenging as there can be only a few significant differences in symptoms between Lyme and other conditions. The best diagnostic method is a test that detects antibodies made by the body’s immune system to fight off the Borrelia burgdorferi bacteria.

The pathogenesis of Lyme disease

In early Lyme disease, symptoms start within 3 to 30 days after a tick bite. A notable sign is a red circular rash with a clear center, resembling a bull’s eye, known as erythema migrans. Only about 70-80% of people with Lyme disease develop the rash, and this rash can sometimes turn into multiple erythema migrans lesions. Other early symptoms include fever, chills, headache, fatigue, musculoskeletal pain, joint pain, and swollen lymph nodes.2

Occasionally, Lyme disease can enter the tissues of the heart, leading to electrical conduction issues and an irregular heartbeat, among other symptoms. This is called Lyme carditis. If the Lyme disease bacteria enters the joint tissue, patients may develop Lyme arthritis.

In extreme cases, patients may develop Lyme Neuroborreliosis (LNB), also known as neurological Lyme disease, despite antibiotic therapy.6 Neurological Lyme disease is a secondary symptom that involves the central nervous system, making it crucial to seek evaluation from a healthcare professional specializing in neurology.2

Neurological Lyme disease is often preceded by classic Lyme disease symptoms that trigger neurological effects such as nerve pain, numbness, double vision, and facial palsy. Unfortunately, these symptoms can persist for weeks or even months, significantly impacting the individual’s quality of life. Healthcare professionals diagnose neurological Lyme disease using blood tests to detect antibodies for Borrelia burgdorferi infection, followed by a differential diagnosis to exclude all other possible causes.2

It’s essential to be aware that sometimes people who think they have Lyme disease may actually have Multiple Sclerosis, an immune-mediated central nervous system disorder. As a bacterial infection, Lyme disease may activate or worsen attacks of Multiple Sclerosis. It does this by triggering the immune system to attack the nerve fibers, leading to the worsening of Multiple Sclerosis symptoms or new attacks. This is why seeking evaluation from a neurologist or other healthcare professional specializing in neurology is critical to distinguish between the two conditions for appropriate and effective treatment.2

What is Post Treatment Lyme Disease Syndrome?

As we’ve established, Post-Treatment Lyme Disease Syndrome (PTLDS) is a medical condition characterized by a patient who has been infected by the bacterium Borrelia burgdorferi, received antibiotic treatment, yet is still experiencing persistent symptoms. The role of the limbic system, a key part of the brain involved in emotions and stress response, becomes significant in understanding PTLDS and its persistent symptoms.

Similar to neurological Lyme disease, the duration of PTLDS can differ among individuals, with some experiencing symptoms for a few months and others for several years.

Symptoms of post-treatment Lyme disease syndrome

The persistent symptoms of PTLDS can be similar to those experienced during the acute phase of Lyme disease, including: 

  • Fatigue: Persistent and unexplained fatigue is a common symptom of PTLDS. It can significantly impact a person’s energy level and overall quality of life.2
  • Muscle aches and joint pain: Ongoing muscle aches and joint pain are frequently reported in individuals with PTLDS. This pain can be intermittent or chronic and may affect different parts of the body, comparable to fibromyalgia.2
  • Cognitive difficulties: Some people with PTLDS experience problems with concentration, memory, and other cognitive functions (learning, attention, and decision-making), often referred to as “brain fog.”2
  • Sleep disturbances: Insomnia or disrupted sleep patterns can be a part of post-treatment Lyme disease syndrome.2
  • Headaches: Recurring headaches or migraines are reported by some individuals with PTLDS.2
  • Neuropathy: Numbness, tingling, or weakness in the extremities may occur in some cases due to nerve involvement.2
  • Dizziness and balance Issues: Some individuals may experience dizziness, lightheadedness, or difficulty maintaining balance.
  • Mood changes: PTLDS can be associated with mood swings, irritability, anxiety, and depression.2

Research suggests that conditions like PTLDS may arise due to trauma to the limbic system caused by infection, injury, or acute stress—especially when the nervous system already faces a high burden of chronic stress from life events.7,8

This combination of heightened stress, coupled with an acute injury or bacterial infection like Borrelia burgdorferi, creates conditioned immune suppression, leading to unproductive and conditioned patterns that continue to stimulate the immune and nervous system with persistent symptoms, even after the initial injury or infection has been treated.9

Through neuroplasticity, the brain’s ability to change and create new neural pathways, it’s possible to reset the body’s response to stress and return to a state of safety and balance.10 This transformative process can positively impact one’s overall well-being and quality of life.

What to Do When Post Treatment Lyme Disease Syndrome Symptoms Flare Up

A well-balanced, normal-functioning immune system protects us from viruses, bacteria, and foreign substances. However, when this system is out of sync, dysfunction results. An underactive immune system fails to adequately respond to infections, making even minor events potentially severe. On the other hand, an overactive immune response, as we see with autoimmune diseases, can lead to significant illness.

More than 23.5 million10 Americans are affected by autoimmune diseases. PTLDS, like other autoimmune diseases, is often characterized by flare-ups, where symptoms periodically intensify.

There are a few reasons why Lyme disease symptoms may flare up after antibiotic treatment, including:

  • Incomplete initial eradication: In some instances, the initial course of antibiotic treatment may not eliminate all the bacterium Borrelia burgdorferi, which causes Lyme disease.
  • Reinfection: After the initial antibiotic treatment, a person can contract Lyme disease again if they are bitten by another infected tick.
  • Immune response: In some cases, the immune system’s response to the initial Borrelia burgdorferi infection may trigger inflammation and symptoms even after antibiotic treatment has cleared the bacteria from the body.

If you are experiencing PTLDS and your symptoms flare up, some necessary steps can be taken to help control and manage the situation, such as:

  • Pause and Reduce Stress: Taking a moment to slow down and engage in stress management techniques, such as deep breathing or meditation, can help calm your system and alleviate immediate stress.
  • Identify Triggers: Recognizing potential triggers is vital in preventing future flare-ups. Common triggers include emotional or physical stress, infections, lack of sleep, and changes in diet or schedules.
  • Keep a Symptom Journal: Keeping a journal to record your experiences can help identify patterns and better understand your symptoms. It is essential to note events, environmental factors, and emotional reactions related to your symptoms.
  • Detox and Nourish Your Body: To relieve sore muscles and pain, you can utilize methods like heat or ice, Epsom salt soaks, gentle massage, and acupuncture.
  • Prioritize Sleep: Take time to rest and try to optimize your sleep. Getting quality sleep of 7-9 hours per night supports your immune system’s ability to fight infections and manage inflammation.

Is Post Treatment Lyme Disease Syndrome Really a Setback or Part of the Healing Process?

Post Treatment Lyme Disease Syndrome (PTLDS) may feel like a setback, but one way to manage it is to shift your perspective, calm your system, and allow your body to continue its healing process. Some people may find that PTLDS and its persistent symptoms take time to resolve, but they shouldn’t get discouraged. They should continue to follow the care steps outlined above to support their healing journey, which can improve neurological functioning and reduce chronic inflammation.

re-origin’s neuroplasticity brain retraining program is a scientifically proven method to address autoimmune conditions, including PTLDS, that shifts the nervous system from “flight or fight” mode into a modality to overcome chronic conditions such as chronic fatigue, pain, anxiety, depression, and more. If you are interested in hearing more about our program, schedule a free info call today.

FAQs

Can Lyme disease flare up after treatment?
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How common is PTLDS?
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The prevalence of PTLDS is not precisely known, but studies suggest that 10% to 20% of individuals treated for Lyme disease may develop PTLDS.

How long does PTLDS last?
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The duration of PTLDS can vary from person to person as the exact duration of PTLDS is not well-defined. Some individuals may experience persistent symptoms for a few weeks, while others may continue to have symptoms for several months or even years.

What are the long-term effects of treated Lyme disease?
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By

MSR