Here's What You Need to Know About Untreated Lyme Disease (2022)

Lyme disease is the most frequently seen vector-borne disease in the United States. It is a bacterial infection spread by black-legged ticks (commonly known as deer ticks). Symptoms vary based on the severity of the case.

Untreated cases can progress to serious, even fatal health conditions, from arthritis and nerve pain to cardiac arrhythmia (irregular heartbeat) or Lyme neuroborreliosis (inflammation of the brain and spine).

Here's What You Need to Know About Untreated Lyme Disease (1)

If you live in an area where black-legged ticks are native—primarily the Northeast, but also parts of the Central, mid-Atlantic, and Pacific states—you may be aware of the risk of Lyme disease. But the most notorious symptom, “bullseye rash,” doesn’t occur in everyone and can go unnoticed. As such, a significant proportion of cases go untreated.

It’s important to understand more about Lyme disease, what can happen if it goes unmanaged, and what you can do to treat it. The more vigilant you are, the better off you’ll be.

Symptoms of Lyme Disease

Lyme disease causes a range of symptoms that change and intensify as the Borrelia burgdorferi bacteria, first introduced by the tick, spread to the rest of the body. Untreated cases can cause serious problems or lead to a fatal condition. What’s tricky, too, is that the onset of initial symptoms occurs anywhere from three to 30 days after exposure.

Clinically, there are three stages of Lyme disease: early localized disease, early disseminated disease, and late disseminated disease. Early localized disease, the initial manifestation, is characterized by:

  • Bullseye rash and swelling, the most notorious symptom, occurs in 70% to 80% of cases. Clinically referred to as “erythema migrans,” its appearance varies—it can be a different color or shape—especially in people of color. It arises about a week after exposure to the bacteria.
  • Other symptoms of the first stage include fever, fatigue, headache, and joint pain. Very often, those with the condition—especially if there is no rash—feel as if they’re experiencing the flu.

Disseminated Lyme disease symptoms arise as the bacterial infection works its way to other bodily systems, organs, and structures. Typically a month or more after exposure—and potentially chronic—symptoms have changed and include:

  • Neck stiffness and headache
  • Rashes on parts of the body other than the original
  • Pain and severe swelling in the joints
  • Facial palsy, a drooping and/or paralysis of parts of the face
  • Inflammation and swelling of the brain and spine (aseptic meningitis)
  • Heart arrhythmia, palpitations, or inflammation
  • Pain, tingling, and numbness in hands and feet (radiculopathy)
  • Periods of dizziness and shortness of breath
  • Vision problems (conjunctivitis), in rare cases

In its late disseminated phase, the bacterial infection has begun affecting nerve and joint structures, causing significant complications. Chronic arthritis, continued swelling of the brain (encephalopathy), and nerve damage can all result.

Symptoms of Lyme Disease

When to See a Healthcare Provider

Since Lyme disease can take different forms, and since it’s often confused with other conditions, it’s important to be proactive if you suspect the condition. What signs prompt medical help? Call the healthcare provider if:

  • You have a bullseye rash—or any kind of rash—following a tick bite.
  • You experience flu-like symptoms after a tick bite.
  • You experience symptoms of more advanced Lyme disease: arthritis, heart palpitations, facial paralysis, dizziness, and others.

Untreated Lyme Disease Frequency

It’s difficult to get exact numbers when it comes to Lyme disease, in part because there’s only limited accounting of the condition’s frequency overall, and it’s often misdiagnosed or mistaken for other conditions.

Currently, it’s estimated that 476,000 people develop it in the United States every year, with 81% of the cases clustered in the Northeast, upper Midwest, and mid-Atlantic regions.

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A significant—but shrinking—proportion of those with the disease end up progressing without treatment. Current estimates are hard to come by. In 2012, researchers estimated that about 16% of Lyme disease cases present without rash—increasing the chance that the case is missed, overall. From 1.6% to 7% of all infections have no symptoms.

Knowledge and awareness of this disease have grown over the past couple of decades, greatly improving outcomes. This improving prognosis is associated with better care and detection, leading to timelier intervention.

If you live in a hot spot area for black-legged ticks, never hesitate to reach out to your healthcare professional if you’re feeling sick or have a rash.

Complications of Untreated Lyme Disease

If unchecked, the Lyme disease infection can spread to other bodily systems, causing significant damage. Untreated, complications of this condition can be very severe:

  • Arthritis: Prolonged infection with Lyme disease leads to chronic joint inflammation and swelling, usually in the knees (though other joints can be affected). These symptoms tend to arise within two years of infection, with periods of flare-ups and remissions. This arthritis is relatively difficult to manage, though antibiotics and steroids may be attempted.
  • Lyme carditis: If the bacteria reach the heart tissues, they can cause inflammation and lead to “heart block.” The electrical signals being sent between the upper and lower chambers of the heart are interrupted, impairing the coordination of the heartbeat. Though disruptive, this is rarely fatal.
  • Lyme neuroborreliosis: Inflammation of multiple nerves, including those in the spine and brain, is the chief characteristic of this condition. This can also affect the meninges—the layer of tissue surrounding the brain and spine—leading to meningitis, among other conditions. Antibiotic therapy, if applied promptly, tends to be effective as a treatment.

Even in cases where Lyme disease has progressed, antibiotic regimens—especially drugs like doxycycline—are generally successful in resolving problems.

Some see relapses of their condition despite treatment, something that’s commonly termed “chronic Lyme disease.” Clinically referred to as post-treatment Lyme disease syndrome (PTLDS), this is the persistence of fatigue, nerve and skeletal pain, and cognitive difficulties more than six months after treatment has ended.

There’s some debate about why PTLDS occurs in some but not others. Some believe it’s an autoimmune response triggered by the original infection. In addition, there is no consensus on treatment for this condition. Studies have shown that antibiotic treatments don’t help those with this condition.

Lyme Disease Diagnosis

When it comes to cases of suspected Lyme disease, several factors help healthcare providers determine a diagnosis. Here’s a quick breakdown of what’s taken into account:

  • The presence of a tick: For the black-legged tick to successfully infect someone, it needs to be attached to a person for 24 to 36 hours. If you see a tick attached to your body, gently remove it and try to save it to bring to your healthcare provider for identification. Get medical help immediately.
  • The tick bite: While the bullseye bruise doesn’t always accompany the tick bite, the presence of the characteristic rash will certainly raise flags for healthcare providers.
  • Geographical location: Infection is expected only in areas where the black-legged tick is native. Alongside the Northeast, mid-Atlantic, Upper Midwest, and West Coast of the United States, infectious ticks reside in Canada, as well as parts of Europe and Asia.
  • Risky environments: Lyme disease will more often be suspected if you’ve had contact with environments conducive to black-legged ticks—areas of tall grass or forested regions. Gardeners and agricultural workers may be at particular risk.
  • Signs and symptoms: The presence of symptoms must be considered. Notably, these can resemble those of other diseases, so this assessment in itself is rarely conclusive.
  • Differential diagnosis: Since Lyme disease symptoms can resemble those of the flu or another type of infection, healthcare providers will also need to make sure other diseases aren’t causing symptoms.
  • Blood tests: When suspected, healthcare providers will use blood samples to test for the presence of antibodies to Lyme disease, with the ELISA for Lyme disease test being the most popular. Notably, blood samples are sometimes taken before antibodies have a chance to form, giving a negative result.

In those cases of untreated Lyme disease that have become more advanced and serious, as in its late disseminated phase, additional testing may be needed:

  • Electrocardiogram (ECG): This standard test of heart function measures its electrical activity.
  • Echocardiogram: Another noninvasive test, this allows healthcare providers to visualize any effects on the heart, using ultrasound waves for imaging.
  • Magnetic resonance imaging (MRI): If infection may have spread to the brain or spine, MRI allows healthcare providers to work from two- or three-dimensional representations of affected areas.
  • Spinal tap: Assessment of the cerebrospinal fluid surrounding your brain and spine—harvested directly using a large surgical needle—may be necessary in cases of neurological inflammation due to Lyme disease.

How Lyme Disease Is Diagnosed

A Word From Verywell

While it’s always good to be careful about Lyme disease—especially if you live in an area where black-legged ticks are native—there’s also some perspective necessary. With effective medical intervention, this condition is easily and swiftly managed. Improvements in detection have also caused drastic reductions in associated complications.

With increased awareness of Lyme disease on the part of the broader population, it’s only natural that reports of this condition rise. This doesn’t, however, mean that you’re at greater risk or that you should avoid the woods; it simply means that people—and healthcare providers—are doing their respective parts.

Ultimately, Lyme disease doesn’t affect all that many people, and even less likely are cases where it gets severe. Nonetheless, don’t hesitate to get help if you suspect you have this condition, with or without a tick bite. Good communication increases the chances of early detection, leading to timelier and more effective treatment.

Frequently Asked Questions

  • Can you have Lyme disease and not know it?

    Yes, symptoms of Lyme disease can often go unnoticed. An estimated one in six people with Lyme disease do not experience the tell-tale rash and up to 7% of people with Lyme disease have no symptoms.

  • Left untreated, Lyme disease can spread to joints and organs, causing significant damage. Arthritis, heart disease, and nervous system problems are common complications of untreated Lyme disease.

  • How is Lyme disease diagnosed?

    In the initial stages, Lyme disease is diagnosed based on the appearance of a bulls-eye rash after a black-legged tick bite. Other symptoms that may accompany the first stage of Lyme disease include fever, fatigue, headache, and joint pain. It is often described as feeling like the flu.

    Blood tests are used to confirm a Lyme disease diagnosis. However, the test checks for Lyme disease antibodies, which often are not present in the early stages of infection. Blood tests are used to diagnose later stages of Lyme disease.

    (Video) Lyme Disease Signs and Symptoms (2 of 5) | Johns Hopkins Medicine
(Video) Lyme Disease | Pathophysiology, Signs, and Treatment

9 Sources

(Video) Long Haul Lyme Disease Risk Found: Even in Early Treated Patients | Johns Hopkins Rheumatology

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

  1. Jacquet C, Goehringer F, Baux E et al. Multidisciplinary management of patients presenting with Lyme disease suspicion. Médecine et Maladies Infectieuses. 2019;49(2):112-120. doi:10.1016/j.medmal.2018.06.002

  2. Centers for Disease Control and Prevention, National Center for Emerging and Zoonotic Infections Diseases. Signs and symptoms of Lyme disease.

  3. Hatchette T, Davis I, Johnston B. Lyme disease: clinical diagnosis and treatment. Can Comm Dis Report. 2014;40(11):194-208. doi:10.14745/ccdr.v40i11a01

  4. Kugeler K, Schwartz A, Delorey M, Mead P, Hinckley A. Estimating the frequency of Lyme disease diagnoses, United States, 2010–2018. Emerg Infect Dis. 2021;27(2):616-619. doi:10.3201/eid2702.202731

  5. Aucott J, Seifter A, Rebman A. Probable late lyme disease: a variant manifestation of untreated Borrelia burgdorferi infection. BMC Infect Dis. 2012;12(1). doi:10.1186/1471-2334-12-173

  6. Krause P, Bockenstedt L. Lyme disease and the heart. Circulation. 2013;127(7). doi:10.1161/circulationaha.112.101485

  7. Rauer S, Kastenbauer S, Fingerle V, Hunfeld KP, Huppertz HI, Dersch R. Lyme neuroborreliosis. Dtsch Arztebl Int. 2018;115(45):751-756. doi:10.3238/arztebl.2018.0751

  8. Centers for Disease Control, National Center for Emerging and Zoonotic Infectious Diseases (NCEZID). Post-treatment Lyme disease syndrome.

  9. MedlinePlus Lyme disease.

FAQs

What happens if you let Lyme disease go untreated? ›

Left untreated, Lyme disease can spread to joints and organs, causing significant damage. Arthritis, heart disease, and nervous system problems are common complications of untreated Lyme disease.

How long does Lyme disease last untreated? ›

Without treatment, it can last 4 weeks or longer. Symptoms may come and go. Untreated, the bacteria can spread to the brain, heart, and joints.

Can you beat Lyme disease without treatment? ›

If you've recently had a tick bite or think you might have Lyme disease, see your doctor right away. Antibiotics are the only proven treatment for Lyme disease, and it's best to start taking them earlier rather than later. If you do decide to try natural treatments, check with your doctor first.

What are the top 3 severe symptoms of Lyme disease? ›

These include fever, rash, facial paralysis, and arthritis. The appearance of the erythema migrans rash can vary widely.

Can late-stage Lyme disease be cured? ›

Treatment with the right antibiotics can cure Lyme disease. Late-stage Lyme disease is what happens months to years after a Lyme infection doesn't get treatment. Antibiotics can treat late-stage disease, but recovery can take much longer than it would with early treatment.

Can you have Lyme disease for 20 years? ›

If treated, Lyme disease does not last for years. However, for some people, the after-effects of the disease can linger for months and sometimes even years. Alternative medicine providers call this condition "Chronic Lyme disease," but this title is simply wrong.

How do you know if you have late stage Lyme disease? ›

Symptoms of late stage Lyme disease

Severe headaches and neck stiffness. Additional EM rashes in new places on the body. Facial palsy, also known as Bell's palsy – paralysis of one side of the face. Arthritis or joint pain and swelling, especially of large joints (such as the knee)

Can you recover from Lyme disease without antibiotics? ›

The use of antibiotics is critical for treating Lyme disease. Without antibiotic treatment, the Lyme disease causing bacteria can evade the host immune system, disseminate through the blood stream, and persist in the body.

What is the last stage of Lyme disease? ›

Late persistent Lyme disease

If Lyme disease isn't promptly or effectively treated, damage to the joints, nerves, and brain may develop months or years after you become infected. It is the last and often the most serious stage of the disease.

How do you detox from Lyme disease? ›

How to Detoxify in Lyme Disease
  1. eating organic foods to avoid toxins.
  2. living in a mold free environment to prevent absorption of mold toxins.
  3. avoiding toxic chemicals in your home.
  4. supporting liver detoxification with glutathione.
  5. promoting regular bowel movements to eliminate toxins.
Jun 13, 2022

What herbs cure Lyme disease? ›

In a 2017 study they found that essential oils from oregano, cinnamon bark, clove buds, citronella and wintergreen killed stationary phase Lyme bacteria even more potently than daptomycin, the champion among tested pharmaceuticals.

What kills Lyme biofilm? ›

Potential treatment for Lyme disease kills bacteria that may cause lingering symptoms, study finds. Screening thousands of drugs, Stanford scientists determined that in mice, azlocillin, an antibiotic approved by the Food and Drug Administration, eliminated the bacteria that causes Lyme disease.

What are at least 5 Early signs of Lyme disease? ›

6 Early Symptoms of Lyme Disease
  • RASH. A small red bump is likely to appear at the sight of any tick bite, and does not necessarily mean you've contracted Lyme disease. ...
  • FATIGUE. ...
  • HEADACHE. ...
  • FEVER AND CHILLS. ...
  • BODY ACHE. ...
  • SWOLLEN LYMPH NODES.

What can Lyme disease do to your body? ›

Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks.

How do you feel when you have Lyme disease? ›

Erythema migrans is one of the hallmarks of Lyme disease, although not everyone with Lyme disease develops the rash. Some people develop this rash at more than one place on their bodies. Other symptoms. Fever, chills, fatigue, body aches, headache, neck stiffness and swollen lymph nodes can accompany the rash.

How does sugar affect Lyme disease? ›

But eating such foods can actually make Lyme disease worse. Lyme bacteria thrive on yeast and sugar. When you consume such foods, you're not just feeding yourself—you're also feeding the bacteria, encouraging it to grow and spread. The bacteria want more of it, which is what causes you such intense cravings.

What does Lyme bacteria feed on? ›

There is no specific diet for Lyme disease, though some evidence suggests that anti-inflammatory foods can help. The bacterium Borrelia burgdorferi (B. burgdorferi) causes Lyme disease. Humans contract the bacterium through the bites of ticks carrying it.

What is the best Lyme diet? ›

The Lyme diet supports the immune system. This generally means eating fruits, vegetables, and high quality proteins to give you the raw materials your body needs. It means avoiding sugar, which suppresses the immune system, and other substances your body may react to.

Does ivermectin work on Lyme? ›

Candace in late February began taking Ivermectin to kill the remaining Lyme disease in her body. The medication, which for years has been approved for veterinary use in treating parasites in cattle, deer and dogs, recently has begun administration to humans.

Does hydroxychloroquine help Lyme disease? ›

Hydroxychloroquine has an average rating of 7.2 out of 10 from a total of 9 ratings for the treatment of Lyme Disease, Arthritis. 67% of reviewers reported a positive experience, while 22% reported a negative experience.

Does brain MRI show Lyme disease? ›

Lyme disease symptoms may also have a relapsing-remitting course. In addition, Lyme disease occasionally produces other abnormalities that are similar to those seen in MS, including positive findings on magnetic resonance imaging (MRI) scans of the brain and analysis of cerebrospinal fluid (CSF).

How effective is doxycycline for Lyme? ›

scapularis tick, is highly effective in preventing the development of Lyme disease. Prophylaxis with doxycycline had an efficacy of 87 percent, which compares favorably with the 95 percent efficacy rate of doxycycline given once weekly to prevent leptospirosis.

How do you get rid of spirochetes? ›

Treatment with metronidazole has been shown to eliminate the spirochaetes. However, treatment might not lead to improvement of symptoms. In most cases, the patient can be observed without antibiotic treatment.

How much doxycycline should I take for Lyme? ›

In areas that are highly endemic for Lyme disease, a single prophylactic dose of doxycycline (200 mg for adults or 4.4 mg/kg for children of any age weighing less than 45 kg) may be used to reduce the risk of acquiring Lyme disease after the bite of a high risk tick bite.

Can a blood test detect Lyme disease? ›

The Lyme disease blood test looks for antibodies in the blood to the bacteria that causes Lyme disease. The test is used to help diagnose Lyme disease. There are many species of ticks. Of these, a large proportion are capable of carrying disease.

What is stage 3 Lyme disease? ›

Late Persistent Lyme Disease (Stage 3)

It's the most severe stage and can occur months to years following the initial infection. Damage to the joints, nerves, and brain is possible if not treated. Muscle and joint pain is the most common complaint of those in late-stage Lyme disease, affecting 80% of untreated people.

Does Lyme disease make your legs hurt? ›

Musculoskeletal involvement, particularly arthritis, is a common feature of Lyme disease. Early in the illness, patients may experience migratory musculoskeletal pain in joints, bursae, tendons, muscle, or bone in one or a few locations at a time, frequently lasting only hours or days in a given location.

Does Lyme disease move around your body? ›

A recent study has shown that Borrelia burgdorferi, the bacterium that causes Lyme disease, spreads throughout the body by crawling along the inside wall—the endothelium—of blood vessels.

Can Lyme disease lay dormant in your body? ›

Lyme disease may lead to different symptoms at different times. Symptoms may develop quickly or not until many months or years later as the spirochete can evade the immune response and remain dormant in the human host for long periods.

What is living with Lyme disease like? ›

Muscle and joint pain can migrate from one body part to another. Patients can feel sick one day and well the next. Left untreated, Lyme can wreak havoc on the body causing arthritis, persistent joint pain, cognitive issues, neuropathy, encephalitis, exhaustion, tremors and sometimes fatal heart problems.

What does Lyme fatigue feel like? ›

Tiredness, exhaustion, and lack of energy are the most frequent symptoms. The Lyme fatigue can seem different from regular tiredness, where you can point to activity as a cause. This fatigue seems to take over your body and can be severe.

Why does Lyme disease make you so tired? ›

Lyme patients' fatigue is caused by our bodies constantly fighting off illness, then on top of that we have to do everything else other people do on a regular day. We get so used to it, we forget what it feels like to be normal.

How long can Lyme disease go undiagnosed? ›

Symptoms. Late Lyme disease usually develops 6-36 months after a person first receives the causal infectious tick bite. The symptoms of late Lyme disease differ from the earlier stages.

Is it possible to have Lyme disease for years and not know it? ›

Lyme disease can easily go undiagnosed, mainly because the symptoms are diverse and easily misattributed. When this happens, you can develop what Gaito calls "late-stage or chronic" Lyme disease, which is less likely to respond to antibiotics, resulting in ongoing, potentially debilitating symptoms.

What are the long term side effects of Lyme disease? ›

Chronic symptoms of Lyme are a much longer list and may include vertigo, ringing in the ears, short-term memory loss, light and sound sensitivity, mood swings, anxiety, depression, heart palpitations, and serious cardiac problems.

Can Lyme disease be detected years later? ›

Your immune system continues to make the antibodies for months or years after the infection is gone. This means that once your blood tests positive, it will continue to test positive for months to years even though the bacteria are no longer present.

How does Lyme disease affect the brain? ›

Lyme disease effects on the brain

Research has shown that Lyme spirochetes can invade the brain and wreak all kinds of havoc. They damage nerve cells, trigger inflammation, release neurotoxins, and disrupt the balance of brain chemicals.

How do you know if you have late stage Lyme disease? ›

Symptoms of late stage Lyme disease

Severe headaches and neck stiffness. Additional EM rashes in new places on the body. Facial palsy, also known as Bell's palsy – paralysis of one side of the face. Arthritis or joint pain and swelling, especially of large joints (such as the knee)

Would Lyme disease show up in routine blood work? ›

Lyme disease can be detected by tests that look for antibodies in the blood or in the fluid from the joints or spine. However, antibodies can take 4-6 weeks to be detected in a blood test after becoming infected. Borrelia burgdorferi (B.

What organs does Lyme disease affect? ›

It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart. Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression.

What triggers dormant Lyme disease? ›

Causes of early disseminated Lyme disease

Lyme disease is caused by Borrelia burgdorferi bacteria. You can contract the infection when a tick that carries the bacteria bites you. Typically, blacklegged ticks and deer ticks spread the disease. These ticks collect the bacteria when they bite mice or deer.

What does chronic Lyme feel like? ›

Chronic Lyme disease is an ongoing Borrelia burgdorferi infection that can involve any body system or tissue. The infection produces a wide range of symptoms and signs, which can be debilitating for some patients. Common symptoms include severe fatigue, migratory musculoskeletal pain, headaches, and impaired memory.

What does Lyme fatigue feel like? ›

Tiredness, exhaustion, and lack of energy are the most frequent symptoms. The Lyme fatigue can seem different from regular tiredness, where you can point to activity as a cause. This fatigue seems to take over your body and can be severe.

What is Stage 4 Lyme disease? ›

If Lyme disease isn't promptly or effectively treated, damage to the joints, nerves, and brain may develop months or years after you become infected. It is the last and often the most serious stage of the disease. Symptoms at this stage may include: Arthritis that most often affects the knee.

Does Lyme disease shorten your life? ›

Take away message: In the long run, Lyme does not affect your life as much as other health conditions. It is important to live a healthy lifestyle regardless of whether you are struggling with Lyme disease or not.

How do people live with chronic Lyme disease? ›

Living with Lyme disease
  1. Eat a healthy diet and limit your sugar intake.
  2. Get plenty of rest.
  3. Exercise at least three times a week for at least 30 minutes each day.
  4. Reduce stress.
  5. Use anti-inflammatory medication when necessary.
Feb 13, 2019

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