Do you Know…

Less than 50% of Lyme patients recall a tick bite or a rash.

What is Lyme Disease?

Lyme disease is a bacterial infection transmitted usually by the bite of an infected blacklegged (deer tick). The corkscrew-shaped bacteria strains are called Borrelia burgdorferi (a.k.a. Borrelia). As blacklegged ticks can frequently carry other tick-borne illnesses (co-infections) besides Borrelia, the term Lyme is often additionally used to refer to these collective tick-borne infections.

Lyme disease is a potentially serious infection that often causes rheumatologic (e.g. joint pain, arthritis, and immune disorders) and neurological symptoms. Early diagnosis and treatment is essential to preventing a more serious infection that can spread throughout the body with debilitating symptoms.
Since it was discovered by clinicians in 1977 (and later identified by Wilhelm Burgdorfer in 1982), this disease has risen to become the most common vector-borne illness in the United States and Northern Hemisphere– with an estimated 476,000 new cases diagnosed and treated every year in the United States alone.
Borrelia is regarded as one of the most complex microorganisms on the planet, because it is able to evade the immune system by:

Changing its form

Moving to areas of the body where it is harder to detect

Shifting its genetic makeup to mask itself

These tactics allow Borrelia to avoid complement proteins, and stop the formation of antibodies – which are the immune system’s main defenses against infectious microorganisms.
However, some strains of Borrelia do not simply hide from the immune system. They can also suppress it, allowing other infections and tick-borne coinfections to thrive and spread throughout the body. If left untreated for a prolonged period of time, the bacteria will invade the body’s various tissues, leading to a variety of more complex symptoms involving the:
Bones
Joints
Muscles
Brain
Other organs and tissues

For a reference paper on the basics of Lyme disease and its associated co-infections, click here to download the PDF.

Signs & Symptoms

Early Lyme Symptoms

Late Stage (Chronic) Lyme Symptoms

Learn from an MD about the signs and symptoms of tick-borne illnesses like Lyme. You’ll also discover what to do if you get a tick bite or have been in tick territory.

Hungry ticks can start to be active in March in Indiana. Watch the webinar so you can be safe and healthy and enjoy the Indiana outdoors this year!

This webinar is presented by Dr. Kim Lentz. She is an Indiana native who graduated from Ball State University and Indiana University School of Medicine. Kimberly began dealing with Lyme disease in 2004 when members of her own family became ill. In 2010 she opened a new medical practice focusing on treating Lyme disease and other tick-borne infections. She is a board member for Indiana Lyme Connect and is a tireless advocate for health in Indiana.

Don’t stay in the dark about tick bites and what to do if you’ve been exposed to ticks. You’ll feel more confident and informed after this webinar!

Early symptoms of Lyme disease usually happen within 3 to 30 days after a tick bite with the dominant complaint being flu-like symptoms which can sometimes be mistaken as the flu or even COVID. At this stage, the disease is localized and has a limited set of symptoms.

Early Lyme symptoms include, but are not limited to:

  • Bull’s-eye or EM expanding rash
  • Fever
  • Fatigue
  • Headaches
  • Chills
  • Joint swelling
  • Arthralgia (i.e. joint pain, redness, stiffness, and reduced mobility)
  • Dizziness
  • Swollen lymph nodes
  • Stiffness
  • Diarrhea
The truly unique early symptom of Lyme disease is the expanding bull’s eye rash or EM (erythema migrans) rash, but the Lyme EM rash can also take on a variety of different presentations as pictured here.
Used with permission by the Bay Area Lyme Foundation
Keep in mind that you can have Lyme disease without either a bulls-eye rash as 50% of those diagnosed with Lyme disease never even recall an EM rash. Additionally, not recognizing a Lyme rash is one of the leading causes of misdiagnosis. If an acute Lyme infection is either left untreated or not treated fully, it can also lead to Late Stage Lyme disease or a chronic problem which is much more difficult to treat and cure.
If an acute Lyme infection is not caught early or resolved fully, it can lead to musculoskeletal, cardiac, neurological, and psychiatric issues. This is referred to as Late stage Lyme disease or chronic Lyme disease. The symptoms and conditions are varied and wide depending on multiple factors including the condition of a person’s immune system and genetic factors, if other infections are present, and how the infection spreads in the blood system.

Late stage Lyme disease can lead to severely debilitating conditions that diminish a person’s quality of life – physically, mentally, and socially.

Late stage Lyme symptoms include (but are not limited to):

  • Any of the above early-stage symptoms on a chronic basis
  • Facial (Bell’s) palsy
  • Tinnitus
  • Cognitive or nervous system dysfunctions
  • Sound sensitivity
  • Light sensitivity
  • Meningoradiculitis (inflammation of the nerves in the brain, head, and spinal cord)
  • Fibromyalgia
  • Cognitive dysfunction
  • Tremors
  • Depression/anxiety
  • Vertigo
  • Neck stiffness
  • Peripheral neuropathy
  • Insomnia
  • GI Abnormalities
  • Acrodermatitis chronica atrophicans (ACA) (a progressive skin condition that causes irritation and swelling)
  • Psych/mood changes

Click here to learn more about the treatment of Lyme disease.

For a reference paper on the basics of Lyme disease and its associated co-infections, click here to download the PDF.

Signs & Symptoms

Learn from an MD about the signs and symptoms of tick-borne illnesses like Lyme. You’ll also discover what to do if you get a tick bite or have been in tick territory.

Hungry ticks can start to be active in March in Indiana. Watch the webinar so you can be safe and healthy and enjoy the Indiana outdoors this year!

This webinar is presented by Dr. Kim Lentz. She is an Indiana native who graduated from Ball State University and Indiana University School of Medicine. Kimberly began dealing with Lyme disease in 2004 when members of her own family became ill. In 2010 she opened a new medical practice focusing on treating Lyme disease and other tick-borne infections. She is a board member for Indiana Lyme Connect and is a tireless advocate for health in Indiana.

Don’t stay in the dark about tick bites and what to do if you’ve been exposed to ticks. You’ll feel more confident and informed after this webinar!

Early Lyme Symptoms
Early symptoms of Lyme disease usually happen within 3 to 30 days after a tick bite with the dominant complaint being flu-like symptoms which can sometimes be mistaken as the flu or even COVID. At this stage, the disease is localized and has a limited set of symptoms.

Early Lyme symptoms include, but are not limited to:

  • Bull’s-eye or EM expanding rash
  • Fever
  • Fatigue
  • Headaches
  • Chills
  • Joint swelling
  • Arthralgia (i.e. joint pain, redness, stiffness, and reduced mobility)
  • Dizziness
  • Swollen lymph nodes
  • Stiffness
  • Diarrhea
The truly unique early symptom of Lyme disease is the expanding bull’s eye rash or EM (erythema migrans) rash, but the Lyme EM rash can also take on a variety of different presentations as pictured here.
Used with permission by the Bay Area Lyme Foundation
Keep in mind that you can have Lyme disease without either a bulls-eye rash as 50% of those diagnosed with Lyme disease never even recall an EM rash. Additionally, not recognizing a Lyme rash is one of the leading causes of misdiagnosis. If an acute Lyme infection is either left untreated or not treated fully, it can also lead to Late Stage Lyme disease or a chronic problem which is much more difficult to treat and cure.
Late Stage (Chronic) Lyme Symptoms

If an acute Lyme infection is not caught early or resolved fully, it can lead to musculoskeletal, cardiac, neurological, and psychiatric issues. This is referred to as Late stage Lyme disease or chronic Lyme disease. The symptoms and conditions are varied and wide depending on multiple factors including the condition of a person’s immune system and genetic factors, if other infections are present, and how the infection spreads in the blood system.

Late stage Lyme disease can lead to severely debilitating conditions that diminish a person’s quality of life – physically, mentally, and socially.

Late stage Lyme symptoms include (but are not limited to):

  • Any of the above early-stage symptoms on a chronic basis
  • Facial (Bell’s) palsy
  • Tinnitus
  • Cognitive or nervous system dysfunctions
  • Sound sensitivity
  • Light sensitivity
  • Meningoradiculitis (inflammation of the nerves in the brain, head, and spinal cord)
  • Fibromyalgia
  • Cognitive dysfunction
  • Tremors
  • Depression/anxiety
  • Vertigo
  • Neck stiffness
  • Peripheral neuropathy
  • Insomnia
  • GI Abnormalities
  • Acrodermatitis chronica atrophicans (ACA) (a progressive skin condition that causes irritation and swelling)
  • Psych/mood changes

Click here to learn more about the treatment of Lyme disease.

For a reference paper on the basics of Lyme disease and its associated co-infections, click here to download the PDF.

Take It With You

Lyme Disease: What You Need to Know

Download this brochure to learn what you need to know about Lyme disease, the fastest growing vector-borne illness in the United States.

How is Lyme Disease Diagnosed?

There is a lot of confusion surrounding the diagnosis of Lyme disease which leads to many early infections being misdiagnosed. First, Lyme disease is a complex infection. Ticks which carry Lyme disease can also transmit other pathogens like Human anaplasmosis, Babesiosis, Bartonella, Powassan virus, Ehrlichia, and possibly other pathogens complicating the diagnosis.

Additionally, many symptoms of Lyme disease are similar to other illnesses complicating diagnosis. For example, early Lyme symptoms (such as fever, muscle aches, fatigue, swollen lymph glands, and a headache) mimic the flu or even COVID.

The classic bulls-eye expanding rash associated with early Lyme disease is not always present or has a different presentation leading to misdiagnosis. Additionally, acute infections left undiagnosed and untreated can lead to a more severe form- Late Stage Lyme disease.

This stage is even more difficult to diagnose, commonly appearing as new onset of depression and psychiatric disorders, MS, Parkinson’s, Chronic Fatigue Syndrome, Bell’s palsy, Carditis, and Fibromyalgia, and other auto-immune conditions which is why many call Lyme the “Great Imitator.”

Furthermore, many infections are missed when diagnosis relies upon current standard two-tiered Lyme diagnostic blood tests which have low sensitivity, especially in the early stages of the disease. Testing for early Lyme can be less than 50% accurate.

To further complicate matters, there are two differing medical opinions regarding the diagnosis of Lyme disease–one relying on a positive two-tiered antibody Lyme blood test (IDSA) and the other taking a clinical approach (ILADS).

Recognizing the shortfalls of the antibodies testing for acute infections, the International Lyme and Associated Disease Society (ILADS) and the Centers for Disease Control (CDC) recommend a clinical diagnosis. A clinical diagnosis essentially means that diagnosis is based more on a physician’s judgment of the whole picture–including tick exposure, physical symptoms and a patient’s rest results. ILC takes the position that Lyme disease is a clinical diagnosis.

With this diagnostic picture, it is not surprising that patients see an average of four doctors before being diagnosed with Lyme disease. Being that an early diagnosis is crucial to preventing a more severe disease, patients need to be well informed, advocate for their health, and work with their medical provider. Physicians who suspect Lyme disease must be a detective who can piece together the clues from multiple sources to come to as accurate a clinical diagnosis as possible.

Have you been exposed to Lyme-carrying blacklegged ticks?
The answer is not as simple as one might first think. You might be surprised where you can pick up a tick! Tick encounters with Lyme-carrying ticks are no longer limited to just a few regions in the country, but rather they are found in all 50 states, in unsuspecting habitats and places like cities and the suburbs. Learn more about tick habitats.

You can also have Lyme disease without knowing if you have been bit or not. Fewer than 50% of patients who have been diagnosed and treated for Lyme disease recall a tick bite. Why is that?

  • The tiny size of the tick (some stages are the size of a poppy seed)
  • The fact that the tick’s bite is painless and does not itch
  • The tick attaching in hard to reach or see places
Have you had a Lyme Erythema Migrans (EM) Rash?
There are many Signs & Symptoms for both early and late stage Lyme infections. However, when it comes to diagnosing early Lyme, the classic bulls-eye rash is commonly viewed as a hallmark sign. The terms “bull’s-eye rash” or “EM rash” are often used interchangeably when it comes to a Lyme disease diagnosis. The rash begins within a few days to several weeks after a tick bite as a red spot which spreads in size to 2” or as large as one’s entire leg or back. The EM rash can also appear at the sight of the tick bite or in another part of the body.


Used with permission by the Bay Area Lyme Foundation

While it is true that the bull’s-eye rash is a classic sign of Lyme disease, it is not the only form that a Lyme-related EM rash can take (see diagram). But the EM rash will most certainly be an expanding round or oval rash.

However, not everyone’s immune system responds with a rash. On average, fewer than 50% of those diagnosed with Lyme disease report ever recall a rash. And, the numbers about how often it appears are wide-ranging – from as few as 25% of cases to as many as 80% of instances of early Lyme disease.

Chronic and/or late stage Lyme cases may also develop a more serious form of rash called Acrodermatitis chronica atrophicans (ACA) – a progressive skin condition that causes irritation and swelling.

Have you had positive/negative diagnostic blood tests for Lyme disease?

The biggest obstacle for patients who are symptomatic for acute Lyme disease is relying on current testing–a two-tiered ELISA and Western Blot. Why? Medical providers typically test a patient presenting with Lyme symptoms early on for a positive Lyme diagnosis. Yet, the standard testing uses antibodies to the Lyme infection and antibodies can take several weeks to develop. This situation leads to many “false negative” results.

Also, negative testing may be due to the fact that there are multiple strains of the bacteria that cause Lyme disease symptoms and some of those strains are not as detectable on standard tests. So, you could still have Lyme disease even with a negative Lyme disease test.

The Infectious Disease Association (IDSA) and The Centers for Disease Control and Prevention (CDC) recommend using the two-step testing process to test for antibodies for acute Lyme disease. If an ELISA test is positive or equivocal, it is then followed by a Western immunoblot test for acute Lyme. According to the IDSA, a negative test indicates no infection even if the patient’s clinical picture indicates Lyme disease. While repeating the blood test after several weeks for antibodies is an option for diagnosis confirmation, it is a risky option. An early infection not treated early and fully can disseminate throughout the body causing a much bigger infection with poorer treatment success.

On the other hand, the International Lyme and Associated Diseases Society (ILADS) as does the CDC recommend using the blood results as part of a clinical diagnosis, left to the judgment of the physician whether or not to treat based on objective and empirical evidence. Recently, an article published in Clinical Infectious Diseases, a journal of IDSA, concludes that the current Lyme blood testing is indeed lacking for diagnosing and supports what ILADS and Lyme patients have been stating for years.

So, in the end, if you are exhibiting early Lyme symptoms and have a history of tick exposure, you can have an actual Lyme infection despite a negative test.

Click here for more information on the guidelines set forth by ILADS, CDC, and IDSA.

How is Late Stage Lyme Disease Diagnosed?

One study suggests 80% of those diagnosed and treated fully in the early stage of Lyme disease, fully recover. However, delayed or unsuccessful treatment of an acute infection can lead to a debilitating form of Lyme disease referred to as Late Stage Lyme, Disseminated Lyme disease, or Chronic Lyme disease. It has a host of presentations as the bacteria has spread throughout the bloodstream with the ability to affect the heart, muscular skeletal system, nervous system and more. Symptoms may include severe fatigue, Lyme arthritis, cognitive impairment, central nervous system dysfunctions, neuromuscular pain, visual and auditory sensitivity, connective tissue disorder, and more.

Distinguishing signs include a waxing and waning of symptoms, swollen knees and Bell’s palsy, and carditis. Diagnosis of MS, Parkinson’s, Chronic Fatigue Syndrome, and Fibromyalgia are common.

Two-tiered diagnostic testing can be more helpful at this stage of diagnosis, however, a clinical diagnosis is still warranted. Most patients find it helpful to see a Lyme-experienced physician (ILADS) when dealing with a suspect Late Stage infection. See the Provider Search Tool below.

Co-Infections

Lyme disease is often spoken of as a standalone infection with Borrelia Burgdorferi, and indeed, this would be a strict definition of the disease. However, this disease is actually associated with a number of other tick-borne infections, which are called “co-infections”.

When a person is infected with Lyme via a tick bite, there is also a good chance that the bug will also transmit one or more co-infections. And, these simultaneous infections will:

  • Affect the patient’s clinical diagnosis
  • The type of symptoms the patient exhibits
  • The progression and/or severity of the individual’s illness
The coinfections most frequently associated with Lyme are:

  • Bartonella
  • Babesia
  • Ehrlichia
  • Mycoplasma
  • Anaplasma
  • Powassan Virus

While any one of the above infections can cause a serious, complicated illness, some of them can be even more dangerous when grouped with other co-infections – regardless of whether the infections resulted from the same tick bite or different tick bites. This type of grouping is often referred to as a “complex”.

A patient dealing with a Lyme (or tick-borne) complex could exhibit symptoms that are typical of a single infection; symptoms that are uniquely caused by two or more infections working together; or a combination of both types of symptoms – which could indicate both a profound suppression of the immune system, and that the infections are widespread throughout the body.

For a reference paper on the basics of Lyme disease and its associated co-infections, click here to download the PDF.

Tips for Preparing for your Doctor’s Appointment

Download our resource with tips to prepare for your appointment with your medical provider when suspecting Lyme disease.

Summary:

Problems which get in the way of diagnosis

Misconceptions regarding diagnosing Lyme disease:

  • Must have a positive two-tiered diagnostic test (takes 3-6 weeks to build antibodies)
  • Must have a bulls-eye rash (less than 50% diagnosed recall a bulls-eye rash)
  • Must recall a tick bite (less than 50% diagnosed recall a tick bite)
  • Tick must be attached between 36-48 hours in order to get Lyme disease (24 hours is considered the minimum attachment time, but other studies show tick attachment times of 16 hours or less could allow for transmission of pathogens)

Frequent causes of a Lyme misdiagnosis include:

  • The failure to recognize the Lyme EM rash
  • Relying on positive Lyme diagnostic testing for a diagnosis vs a clinical diagnosis based on tick exposure, signs/symptoms, ruling out other causes, and lab testing
  • Not recalling a tick bite, so not suspecting Lyme exposure; this is more common than not, as nymph ticks are the size of a poppy seed, tick bites do not itch, and ticks embed in hard to find areas
  • The Lyme bacteria can evade the immune system and trigger immune system dysfunction.

Lyme stories and more …

The following stories were originally broadcast as part of Lyme Disease Awareness Month in 2017 to highlight how debilitating and devastating the disease can be for people from all walks of life.

Provider Search Tool

ILADS has a provider search tool if you want assistance finding a provider who is experienced with treating Lyme disease. Please note that ILC does not recommend or endorse any providers on this list. We are merely providing you this tool as a resource that is available to you. Do your own research and use your best judgment.

ILADS physicians are commonly called “Lyme-literate doctors” (or LLMDs). However, at ILC, we prefer to call these practitioners “Lyme-experienced”, because confronting Lyme is about knowledge, not literacy. There are scores of physicians out there who simply have not had access to the full breadth of research about Lyme disease or the clinical experience dealing with the illness to recognize the signs of Lyme disease and its associated illnesses.

Diagnosing Lyme Disease

Only 29% to 50% of those diagnosed with Lyme disease recall a tick bite. Why is that?  Part of the reason lies in the fact that the nymph stage ticks are almost invisible to the naked eye (the size of a poppy seed).

An expanding bulls-eye rash is diagnostic for Lyme disease, but it is not always present. Studies of those diagnosed with Lyme disease reveal less than 50% report a classic bulls-eye rash.

Early Lyme disease presents itself with flu-like illness of chills and fever, fatigue, swollen lymph nodes, headache, stiff or sore neck, muscle soreness or joint pain, shortness of breath, heart palpitations, or chest pain. Other symptoms may include joint swelling, shooting pains, sleep interference, an expanding rash anywhere on the body, or bell’s palsy.

A delayed diagnosis or undertreated infection can result in Lyme disease spreading throughout the body leading to a host of musculoskeletal, cognitive, neurological and psychiatric symptoms known as late stage or chronic Lyme disease. This stage is more debilitating as well as more difficult to treat and cure.

Your Support Matters

Was the information on this page helpful to you? Please consider making a financial gift to Indiana Lyme Connect to enable us to continue our work in providing tick bite prevention and Lyme disease education to citizens, patients, and medical professionals throughout Indiana.

Indiana Lyme Connect is an all volunteer 501(c)3 tax-exempt nonprofit. 100% of your donations advance the mission of ILC.

Frequently Asked Questions

Do I need a blood test?

Lyme disease is a clinical diagnosis. If there is a tick bite associated with a bullseye rash, that can be clinically diagnostic. If you have been bitten by a blacklegged tick and have become ill, but don’t have a classic rash, then that can still be clinically diagnostic, in the absence of other causes. Laboratory tests for Lyme disease are available but will not be very accurate until around 3 weeks after a bite due to antibody levels in your blood.

Is there a test for Lyme?
The ELISA blood test is often used as an initial screening test for Lyme disease, but unfortunately, it has not proven very reliable as a good screening test for Lyme disease (see research page). A secondary blood test often recommended after the ELISA is an Immunoblot laboratory blood test, which can be more accurate than the ELISA test at times, but is still not definitive in its results, and therefore still requires experienced clinical evaluation to determine a diagnosis.
How do I get tested?
Generally, a visit to your local healthcare provider is needed to have a blood test ordered. However, there are home-based kits available without a doctor’s order. Interpretation of any test results should always be done in collaboration with an experienced healthcare provider.
How do I get the tick tested?

After properly removing the tick, there are options for tick testing. Place the tick in a ziplock bag with a moist cotton ball or piece of moist paper towel and see the following tick testing options. Please note, if a tick tests positive for a specific disease causing pathogen, it does not automatically mean that you have the disease causing pathogen, however, you may be at risk for having been infected. You may want to consult an experienced healthcare practitioner for advice and monitor yourself for any symptoms.

Is there a Lyme vaccine?
Currently, there is no vaccine available. However, there is a vaccine in clinical trials, but many notable Lyme disease organizations have expressed valid concerns regarding the development of the vaccine. There was also a Lyme vaccine in the past, but the vaccine was removed from the market in 2002 due to many individuals becoming ill.
I tested negative with a Lyme test. Could I still have Lyme disease?
Testing is not always definitive and that is why Lyme is a clinical diagnosis. Also, there are multiple strains of the bacteria that cause Lyme disease symptoms and some of those strains are not as detectable on standard tests. Ticks also carry many other pathogens that cause symptoms similar to Lyme disease. These other pathogens are sometimes called co-infections. So you could still have Lyme or a co-infection in light of a negative Lyme disease test.
My doctor told me that it can not be Lyme disease making me sick. But, I wonder if it could still be Lyme?

If you have a history of tick bite(s), even some time ago, and symptoms that are not explained by another definitive diagnosis, then yes, you may want to get evaluated/tested by a healthcare professional experienced in diagnosing and treating Lyme disease and other tick-borne illnesses.

Is Lyme disease contagious?
No, not through casual contact. Lyme disease is caused by a blood borne bacteria and can only be transmitted by blood transmission. Ticks feed on the host’s blood and therefore can transmit pathogens through their bite. There is still uncertainty, although some anecdotal evidence, regarding other transmission methods such as sexual transmission and mother to child transmission in utero.
Why is Lyme disease called the “Great Imitator?”
Lyme disease along with co-infections carried by the same ticks, particularly in the longer term chronic phase, can mimic other diseases which are clinically diagnosed. Examples of diseases that Lyme sometimes imitates are: Chronic Fatigue, Fibromyalgia, Depression, Multiple Sclerosis (MS), Psychiatric illnesses, Parkinsons, Dementia, or even ALS and other neuro-degenerative diseases.
Does a Lyme rash itch?

No. However, rashes from a lone star tick can itch and hurt.

Can Lyme disease be transmitted sexually?
Yes. There is evidence of Lyme bacteria in semen and vaginal fluids, but no ethical studies can be done to prove sexual transmission. The only evidence is anecdotal.
Can I have Lyme disease if I don't recall a tick bite or have a rash?
Yes, it is possible to have Lyme disease if you don’t recall having a tick bite or showing the symptom of a bulls-eye or other EM rash. Studies of those diagnosed with Lyme disease reveal less than 50% report a classic bulls-eye rash.

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