Chronic Lyme Disease: Symptoms, Causes, Diagnosis, and Treatment

Katie Rapkoch, CHPC

Published on

May 14, 2024

Updated on

May 14, 2024

Medically reviewed by

Ben Ahrens, HHP

Chronic lyme disease is an illness that’s transmitted to humans through the bite of a black-legged tick infected with the bacterium Borrelia burgdorferi (B. burgdorferi). While not a life-threatening illness, Lyme disease can cause an array of persistent symptoms and, if not properly treated, can lead to ongoing illness and complications involving the heart, joints, and nervous system.

Prompt diagnosis and treatment with antibiotics cures the infection in most people, however, the recovery process isn’t always so cut-and-dry. Up to 20 percent of people[1] infected with Lyme disease will continue to have chronic symptoms despite a prompt diagnosis and appropriate use of antibiotics. These people may go on to suffer from Lyme disease symptoms for months, or even years—a condition that’s referred to as chronic Lyme disease.

What causes some people to easily recover from Lyme disease while others continue to struggle for years? For many chronic Lyme sufferers, ongoing symptoms may be due to trauma to a part of the brain called the limbic system. This is actually good news, as it means that neuroplasticity can be harnessed to promote repair of the limbic system and aid in the recovery from Lyme disease.

In this article, we’ll be covering everything you need to know about chronic Lyme disease, including how re-origin, a neuroplasticity-based treatment program, can help you rid yourself of your symptoms and reclaim your life.

Chronic Lyme disease is also known as:

  • Persistent Lyme disease
  • Post-treatment Lyme disease syndrome

Symptoms of limbic cross-wiring

Chronic Lyme disease symptoms can occur in anyone who was bitten by a tick carrying the disease, however, only a minority of tick bites actually lead to Lyme disease. The longer the tick is attached to your body, the greater your risk of contracting the disease. Symptoms of Lyme disease vary depending on the stage of infection[2]. Early signs and symptoms (3-30 days after a tick bite) include:

  • Fever
  • Chills
  • Headache
  • Fatigue
  • Joint and muscle aches
  • Swollen lymph nodes
  • Erythema migrans (EM) rash—a bullseye-looking rash that occurs in roughly 70-80 percent of infected people.

If Lyme disease is not properly treated with antibiotics, or a person doesn’t positively respond to antibiotic treatment, symptoms can become chronic and may include:

  • Severe headaches
  • Neck stiffness
  • Severe fatigue
  • Facial palsy (droop on one or both sides of the face)
  • Joint pain and swelling
  • Pain in tendons, muscles, joints, and bones
  • Heart palpitations
  • Disrupted sleep
  • Dizziness
  • Shortness of breath
  • Brain fog
  • Nerve pain
  • Tingling in the hands and feet
  • Depression
  • Anxiety

In some cases, symptoms of chronic Lyme can also manifest as fibromyalgia, food sensitivities, chemical sensitivities, electromagnetic field (EMF) sensitivities, anxiety, and feelings of burnout. While these symptoms might not seem related at first glance, they all stem from a dysfunctional limbic system, which can cause all sorts of wide-reaching symptoms and conditions.

The symptoms of chronic Lyme may wax and wane for some people while for others, symptoms are more or less constant. Additionally, many sufferers notice that their symptoms can be made worse by stress of any kind, whether physical or psychological.

Causes and Risk Factors of Chronic Lyme Disease

Lyme disease is transmitted by the bite of an infected black-legged tick, commonly known as a deer tick. You’re more likely to contract Lyme disease if you live or spend time in grassy or heavily wooded areas where ticks carrying Lyme disease are plentiful. If a Lyme disease infection is not promptly treated, an infected person doesn’t respond properly to treatment, or antibiotic treatment isn’t continued for the correct duration, it becomes a persistent infection that can spread to other parts of the body, causing a wide range of debilitating, severe symptoms collectively referred to as chronic Lyme disease. 

Chronic Lyme tends to occur when a person becomes infected with Lyme disease while their chronic stress load is already high. Let’s say, for example, you contract Lyme while you’re experiencing high stress at work or going through a bad breakup. The combination of stressors essentially overwhelms your brain and changes the circuitry in a part of the brain called the limbic system. 

The limbic system[3] is a set of structures in the brain that help us detect threats to our safety and well-being. Normally, the limbic system responds appropriately to acute threats and then quickly returns back to a calm, unthreatened state once the threat has passed. In the case of chronic Lyme disease, however, the limbic system becomes chronically activated or “turned on.” In other words, the Lyme infection “flips a switch” in your limbic system, telling your body that it’s in danger and must constantly be on the lookout for threats to your health and well-being. 

When the limbic system becomes impaired in this way, its protective mechanisms fire more rapidly and inappropriately. It continuously sends out alarm signals that stimulate the nervous system and immune system. The continuous stimulation of these systems is likely the cause of many of the symptoms people with chronic Lyme experience. These faulty neural pathways ultimately become conditioned, meaning they get stuck in an unconscious loop that perpetuates itself. 

In addition to creating new symptoms, these unproductive reactions make it very difficult for a person to recover from Lyme disease, as their body is under constant distress, leading to chronic inflammation and dysregulation of key systems like the immune system and detoxification mechanisms. When in this impaired state, the body also tends to reject medications, supplements, foods, and nutrients that it needs to recover. 

Chronic Lyme disease can affect anyone at any age, however, there are some risk factors that may make one more likely to develop chronic Lyme after contracting the infection. These include:

  • Having a high chronic stress load prior to contracting the infection.
  • Having experienced trauma prior to contracting the infection.
  • Not getting prompt treatment for the initial infection, or not taking antibiotics for the appropriate length of time.

Complications Associated With Chronic Lyme Disease

Chronic Lyme disease can lead to a range of complications impacting both physical and mental health. Individuals often face challenges in mobility and cognitive functions, which can significantly alter their lifestyle and daily activities. The persistence of symptoms even after treatment can also lead to emotional stress and anxiety. 

It's crucial to consult healthcare professionals before adopting new treatments, as unverified remedies or unproven alternative therapies might exacerbate health issues rather than provide a cure.

How Chronic Lyme is Diagnosed

Lyme disease is diagnosed by a medical doctor based on symptoms and lab testing. Around 70-80 percent[2] of infected people will develop a characteristic bullseye rash three to 30 days after infection, which makes diagnosing acute Lyme disease easier. 

If a person doesn’t have the classic rash, their doctor will ask them about their symptoms and exposure risk, do a physical exam, and run an ELISA antibody test, which detects antibodies to the bacterium, B. burgdorferi. If the ELISA test is positive, the Western blot test is usually done to confirm the diagnosis. This test detects antibodies to several proteins of B. burgdorferi. Diagnosing chronic Lyme is more complex and difficult. This is because when Lyme reaches a chronic stage, the characteristic rash (if there ever was one) goes away and symptoms are highly variable and non-specific. 

On top of that, blood tests aren’t very reliable[4] for chronic Lyme. Antibody response can diminish over time in untreated infections, so testing too late may produce a false negative result. Additionally, traditional testing is based on a single B. burgdorferi strain, which may increase the risk of false negative results in patients infected with other B. burgdorferi strains. 

For this reason, many chronic Lyme patients seek specialty testing[5], which detects antibodies to more B. burgdorferi species than the current Western Blot does. Chronic Lyme is typically diagnosed by a doctor based on a combination of symptoms, health history, exposure risks, traditional lab testing, specialty testing (sometimes), and process of elimination.

How Chronic Lyme is Treated

Because chronic Lyme disease is still poorly understood in the medical community, there is currently no definitive treatment protocol offered through mainstream medicine. Thankfully, however, many people with chronic Lyme are reporting success in resolving their ongoing symptoms by retraining their brains.

Before we delve into how to support chronic Lyme recovery from a neurological perspective, let’s discuss common traditional and alternative treatment options and the advantages and disadvantages of each approach.

Antibiotics

Some doctors may recommend long term antibiotic therapy for chronic Lyme. Unfortunately, the National Institute of Allergy and Infectious Diseases states that several clinical trials have found no benefit in continuing antibiotic therapy in people with chronic Lyme disease[6]. On top of that, taking oral antibiotics for extended periods of time can lead to various complications, including alterations in gut microbiota[7] and antibiotic resistance[8]. 

Ultimately, prolonged antibiotic therapy is not effective in those with chronic Lyme because it doesn’t address the root cause of the patient’s inability to heal: a traumatized limbic system. Only after the limbic system is addressed will chronic Lyme patients potentially benefit from antibiotic treatment.

Diet & detoxification

Some medical practitioners, especially naturopaths, functional medicine doctors, and integrative medicine doctors, will suggest a certain diet or detoxification protocol aimed at killing the B. burgdorferi bacteria and eliminating it from the body. Individuals may see some improvement in their symptoms through detoxification, likely due to a reduction in inflammation, however, most people aren’t able to fully resolve their symptoms via this route.

This is because this approach doesn’t address the hyperactivity of the limbic system, and it’s this hyperactivity that causes important systems like the immune system and detoxification mechanisms to not function properly. The dysfunction of the limbic system must first be addressed for other interventions to work effectively.

Managing symptoms

Many chronic Lyme patients find they aren’t able to make much, if any, progress in their recovery. In these cases, treatment may focus more on managing symptoms, rather than trying to help the patient recover. 

Various modalities may be used to manage symptoms, including pain medications, physical therapy, massage, and rest. As with the treatment modalities above, these approaches fail to address the conditioned pathways in the brain that are perpetuating the ongoing symptoms.

How We Approach Chronic Lyme

While an overactive, traumatized limbic system isn’t the direct cause of Lyme disease, it can prevent the body from properly addressing the infection, leading to ongoing, worsening symptoms. If you can foster the relaxation response by retraining the limbic system, however, inflammation will gradually reduce, your nervous system will rebalance, and your immune system will strengthen, allowing your body to naturally fight and eliminate the infection. 

This is precisely what we teach you how to do through re-origin. Using specific neurocognitive exercises, you can get your brain out of “emergency mode” and back to a place of safety and balance. Once you have retrained your hyperactive, traumatized brain, the physical and emotional symptoms you’re experiencing will naturally resolve themselves. 

re-origin’s approach does not chase or mask symptoms, but rather works to rewire the part of the brain that is causing the dysfunction, resulting in long-lasting recovery. The program is easy to follow, self-directed, cost-effective, and takes just minutes a day to implement.

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How to Live and Cope with Chronic Lyme

At re-origin, we don’t want you to have to live and cope with chronic Lyme. We want to help you recover, eliminating the need for coping mechanisms altogether. Our neuroplasticity training program involves applying an easy-to-follow, five-step neurocognitive technique to override and rewire faulty conditioning in the brain and create new, functional neural pathways. 

The key to overcoming chronic Lyme lies in systematically applying our techniques and being persistent and consistent in your efforts. With dedication and repetition, you can change your brain and consequently, your physical symptoms.

How To Prevent Chronic Lyme Disease

Preventing chronic Lyme disease involves proactive measures to minimize tick exposure. In areas prone to ticks, such as wooded or grassy regions, using insect repellent on skin and clothing is crucial. Staying on the center of trails while hiking reduces the risk of brushing against tick-infested vegetation. Regularly checking your body, especially the scalp, for ticks after outdoor activities, and changing clothes can also be effective. 

Additionally, ensuring your pets are tick-free and treating clothing with long-lasting insect repellents like permethrin further decreases the chances of tick bites. If bitten, immediate medical consultation and prompt treatment are vital in preventing the progression to chronic symptoms.

Frequently Asked Questions

Below are answers to some of the most commonly asked questions about chronic Lyme:

Is chronic Lyme disease real?

Yes—studies show that up to 20 percent of people[1] who receive treatment for the initial Lyme infection will experience lingering symptoms, including fatigue, pain, disrupted sleep, and decreased mental functions.

Can you get Lyme without a tick bite?

While being bit by a tick carrying Lyme disease is the most well-known way of contracting Lyme, research suggests that Lyme can also be transmitted sexually[9] or passed from mothers to newborn babies via the placenta[10]. It’s also important to note that some people don’t realize they were bitten by a tick, as they don’t notice the bite or develop a rash.

Why do some people not recover from Lyme disease?

You might be wondering why one person may quickly recover from an acute Lyme disease infection with antibiotics while another person can’t seem to fully recover despite following doctor’s orders. The difference comes down to the state of a person’s limbic system. If a person is experiencing chronic stress in their daily life, say from work or a relationship, getting infected with Lyme disease can be the straw that breaks the camel’s back.

The combination of stressors essentially overwhelms the brain and changes the circuitry in a part of the brain called the limbic system. When in this maladaptive state, the immune system and nervous system can get stuck in “high gear,” which quickly uses up the body’s resources and prevents it from being able to properly fight the infection, leading to ongoing symptoms.

A Final Word from re-origin

Chronic Lyme disease can flip a person’s world upside down. The symptoms are often so debilitating that even doing simple tasks can seem nearly impossible. We want you to know that you don’t have to live with these symptoms—there’s a way out.

Many of the symptoms you’re experiencing and your inability to fully recover are being caused by a feedback loop in the brain. re-origin’s team of neuroscientists and psychologists have extensively studied this loop and how to break it, and have packaged that information into an easy-to-apply program that can help you reclaim your life.

Chronic Lyme sufferers around the globe are finding recovery thanks to brain retraining programs like re-origin. Our neuroplasticity-based program offers a way to calm an overactive limbic system and restore healthy, normal function to the brain and body. When the brain calms down, the body can do what it does best—heal.

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By

Katie Rapkoch, CHPC