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A Lyme disease infection can be frustrating, tiring, and scary. Knowing your risk of contracting Lyme disease and recognizing the stages of Lyme disease can help you advocate for yourself as you seek the health care you need. It is possible to treat Lyme disease and manage the symptoms associated with each stage.
In this article, we will discuss the symptoms associated with Lyme disease and learn more about the three stages of it.
What Is Lyme Disease?
Lyme disease is a bacterial infection caused by the bacterium Borrelia burgdorferi. It spreads to humans through tick bites. A tick bite is not a sign of Lyme disease — just because you may have a tick bite does not necessarily mean you have Lyme disease. To contract Lyme disease, you must be bitten by an infected tick carrying B. burgdorferi. (Source, Source)
Symptoms of Lyme Disease
There are three stages of Lyme disease, each with its own unique symptoms. However, symptoms can overlap between stages, and some people may only experience symptoms associated with the later stages.
Early symptoms of Lyme disease include:
muscle aches and joint pain
swollen lymph nodes
erythema migrans, or bull’s-eye rash
Erythema migrans occurs in 70%–80% of people and usually appears about 7 days following a tick bite. This bull’s-eye rash gradually spreads, reaching up to 12 inches or more across. It may feel warm to the touch, but is rarely painful or itchy. (Source)
Additional symptoms can appear days to months after a tick bite. These symptoms include:
severe headaches and neck stiffness
arthritis, especially in the knees and other large joints
sporadic pain in muscles, joints, bones, and tendons
dizziness or shortness of breath
inflammation of the brain and spinal cord
facial palsy (loss of muscle tone on one or both sides of the face)
If left untreated, Lyme disease can become more serious and spread to the joints, heart, and nervous system. However, antibiotics can treat Lyme disease, and holistic approaches can help with managing symptoms. (Source)
Stages of Lyme Disease
Stage 1: Early Localized
In the early localized stage of Lyme disease, the bacteria have not yet spread throughout the body. This first stage of Lyme disease is characterized by erythema migrans, a rash that looks something like a bull’s-eye. Erythema migrans appears at the site of the tick bite between the first and 28th day and may grow for a few days. You may be otherwise asymptomatic, or you may experience flu-like symptoms. (Source, Source)
If you suspect a tick has bitten you, consult your health care provider right away. Early diagnosis and treatment is usually enough to cure Lyme disease. It is estimated that only about 5% of people with Lyme disease continue to experience symptoms after early treatment with oral antibiotics. (Source)
Stage 2: Early Disseminated
Stage 2 develops 3 to 12 weeks after the initial infection and occurs when the bacteria have started to spread throughout the body. This stage is associated with fatigue, fever, muscle pain, and neurological (dizziness and headaches) and cardiac (chest pain, palpitations, and shortness of breath) symptoms. Symptoms can last 12 to 20 weeks. Treatment for early disseminated Lyme disease includes antibiotics administered either orally or intravenously for 2 to 4 weeks. (Source, Source)
Stage 3: Late Disseminated
Stage 3 affects the muscles, joints, and nerves and may occur months or even years after the initial infection. By the late disseminated stage, the bacteria have spread throughout the body. The late stage includes many neurological and rheumatological features. Arthritis, particularly in the knee, is often present. (Source, Source)
Post-Treatment Lyme Disease Syndrome
If you experience persistent fatigue, pain, or brain fog for more than 6 months after concluding antibiotic treatment, you may have post-treatment Lyme disease syndrome (PTLDS), also known as post-Lyme disease syndrome. Not everyone who contracts Lyme disease will have PTLDS; it is unclear why some people experience PTLDS while others do not. (Source)
If you develop PTLDS, you may feel frustrated and alone in your search for answers to treating and managing it. However, know that you are not alone. Research continues into the cause (or causes) of PTLDS — including whether or not it has an autoimmune aspect — and how it can be most effectively treated. (Source, Source)
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PTLDS May Be Autoimmune Related
One possible explanation for PTLDS is that B. burgdorferi may trigger an autoimmune response in some people. This may cause symptoms to persist after the infection is gone and oral antibiotics have concluded. Additional antibiotics are not recommended as prolonged antibiotic use can have adverse and sometimes serious effects. Instead, consult your health care provider about holistic approaches to managing symptoms of PTLDS. (Source)
An Immune Response Accompanies Lyme Arthritis
Lyme arthritis, a common symptom of PTLDS, can occur months after the initial infection and is usually accompanied by an intense immune response. Many individuals are asymptomatic during the earlier stages of the infection only to present with Lyme arthritis months later. (Source)
Some individuals with Lyme arthritis may be unresponsive to antibiotic treatment due to an association between B. burgdorferi and human leukocyte antigens (HLA). HLA is a group of genes that help the immune system distinguish between proteins made by the body and proteins made by bacteria. With Lyme arthritis, it is thought the body cannot differentiate between proteins produced by itself and proteins produced by the bacteria B. burgdorferi, triggering an autoimmune response. Lyme arthritis eventually resolves, either on its own or with the help of medications. (Source, Source)
Not all ticks carry B. burgdorferi; blacklegged ticks (also known as deer ticks) are the most common carriers of Lyme disease. Blacklegged ticks are found throughout the United States, but most cases of Lyme disease occur in the Northeast and Upper Midwest. However, Lyme disease is becoming more common in other locations throughout the country. (Source)
Ticks Are Seasonal
Ticks exist year-round but are most active in the summer and late spring. Lyme disease is often associated with outdoor summer activities, such as fishing, hiking, and camping. Ticks can easily move throughout urban environments by attaching to hosts and jumping across vegetation. So you may still be at risk of contracting Lyme disease with activities in your neighborhood — such as playing in the park or yard — in the spring, summer, and fall. (Source)
A Tick Can Infect Multiple Hosts
Ticks can prey on mammals (including humans and dogs), birds, reptiles, or amphibians. When a tick attaches to its host — whether it is a human or another animal — it will feed on that animal, ingesting its blood and any pathogens it contains. Once the tick is infected, it can transmit the infection to any new hosts for the remainder of its life. A tick must be attached to you for at least 24 hours to transfer the B. burgdorferi bacterium and infect you. (Source, Source)
How to Protect Yourself from Tick Bites and Lyme Disease
Ticks Can Be Hard to See
Knowing if you’ve been in contact with a tick can be tricky. Ticks are generally small, and many people who are bitten by a tick never notice the tick on their body. Many cases of Lyme disease occur due to bites from tiny immature ticks called nymphs, which can be almost impossible to see. Tick and mosquito bites can be easily confused, because tick bites initially look like a small, red bump, similar to a mosquito bite. It can be challenging to assess if a tick has bitten you until other symptoms appear. (Source, Source)
Avoiding Tick Bites and Exposure to Lyme Disease
Your risk of contracting Lyme disease depends on the season, your pets, and your participation in outdoor activities, particularly in areas with tall grass. Nymphs are more active in the warmer months of late spring and summer. If you’re planning to spend time in the woods or areas with tall grass, consider using an organic insect repellent and wearing light-colored clothes, long sleeves, and pants. When you return home, conduct a tick check of your clothes, body, and scalp. (Source, Source)
The Bottom Line on the Stages of Lyme Disease
Knowing your risk of Lyme disease and recognizing symptoms not only helps with early detection, but can also help with prevention. If you suspect you’ve been bitten by a tick, consult your medical provider right away, because early treatment can be curative. However, even if you don’t notice symptoms of Lyme disease until a later stage, know that medical treatment and holistic symptom management can also be effective.
Lyme disease affects each person differently. Don’t hesitate to consult a health care provider if you think you may have Lyme disease. Symptoms of late disseminated and post-treatment Lyme disease may be nonspecific, so remember to advocate for yourself. Know that the care team at WellTheory is here to support you if you're struggling with post-treatment Lyme disease syndrome and are experiencing autoimmune-like symptoms.