Self-Checks
Though you can’t diagnose or rule out Lyme disease on your own, you can look for the tell-tale symptoms and make sure you understand when you need to see your healthcare provider. You should always inspect yourself, your children, and your pets for ticks after they’ve been outdoors as well.
You should see your healthcare provider under these circumstances:
If you have the distinctive erythema migrans rash that comes with many cases of Lyme disease, even if you’re not sure you’ve been bitten by a tick. This red rash will likely expand and may start to look like a bull’s eye. If you have flu-like symptoms that aren’t going away, and especially if you live in or have recently been to a region of the United States where Lyme disease is more prevalent (this includes the Northeast, Mid-Atlantic, and north-central states). If you know you had a tick attached for more than 48 hours and you have a rash and/or flu-like symptoms.
Clinical Judgment
Again, only healthcare providers can diagnose Lyme disease. In making the diagnosis of Lyme disease, your healthcare provider will consider several factors:
Detailed medical historyPhysical examinationSymptomsTime of year (tick bites are most likely to occur in the summer months)Habits/location (for example, whether or not you spend time outdoors in an area where Lyme disease is more common)Known history of a tick bite
Labs and Tests
There are three stages of Lyme disease, including:
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Early localized stageEarly disseminated stageLate stage
The characteristics of the disease at these stages, as well as any ongoing treatment, can make testing for it challenging.
Some people with nervous system symptoms may also get a spinal tap, which allows a healthcare provider to detect brain and spinal cord inflammation and look for antibodies or genetic material of B. burgdorferi in spinal fluid.
Antibody Tests
Healthcare providers cannot always firmly establish whether Lyme disease bacteria are causing symptoms. In the first few weeks following infection, antibody tests are not reliable because your immune system has not produced enough antibodies to be detected. Antibiotics that are given early during infection may also prevent your antibodies from reaching detectable levels, even though Lyme disease bacteria are causing your symptoms.
The antibody test most often used is called an EIA (enzyme immunoassay) test, which is approved by the Food and Drug Administration (FDA). If your EIA is positive, your healthcare provider should confirm it with a second, more specific test called a Western blot. Both test results must be positive to support a diagnosis of Lyme disease. But again, negative results don’t mean that you don’t have Lyme disease, particularly in the early stage. A positive EIA test doesn’t necessarily mean you have Lyme disease either as false-positives do happen.
Tick Testing
Even if a tick is tested and found to be harboring the Lyme Borrelia burgdorferi bacteria, it may not have necessarily transmitted the bacteria to anyone it has bitten. Therefore, testing a tick will not be an accurate indication of whether someone it has bitten has acquired Lyme disease.
New Tests Under Development
Healthcare providers need tests to distinguish between people who have recovered from the previous infection and those who continue to suffer from active infection.
NIH scientists are developing tests that use the highly sensitive genetic engineering technique known as polymerase chain reaction (PCR) as well as microarray technology to detect extremely small quantities of the genetic material of the Lyme disease bacterium or its products in body tissues and fluids. A bacterial protein, outer surface protein (Osp) C, is proving useful for early detection of specific antibodies in people with Lyme disease. Since the genome of B. burgdorferi has been sequenced, new avenues are available for improving understanding of the disease and its diagnosis.
Differential Diagnoses
Lyme disease is sometimes called “The Great Imitator” because it so often mimics many other illnesses, according to LymeDisease.org, a non-profit that advocates for health care for people with Lyme disease as well as other tick-borne infections. Conversely, other types of arthritis or other autoimmune diseases can be misdiagnosed as Lyme disease.
Symptoms of Lyme disease can mimic conditions such as:
Influenza (the flu) Infectious mononucleosis Rheumatoid arthritis Fibromyalgia Chronic fatigue syndrome Multiple sclerosis Alzheimer’s disease Heart disease Migraine headaches Lymphoma
Your healthcare provider will consider all of these possibilities when making a diagnosis.
Early vs. Later Diagnosis
Lyme disease has been diagnosed long enough, and the infectious bacteria that causes it is easy enough to identify, that most patients with early Lyme disease are able to find a healthcare provider who can accurately diagnose it. Even those patients who are originally told by a healthcare provider that their symptoms are all in their head are often able to find another practitioner to help them get the accurate diagnosis.
But in some cases, patients find great difficulty in getting a Lyme disease diagnosis. And that’s because there is a controversy that surrounds such a diagnosis for patients who don’t suffer symptoms until long after they were possibly bitten by a tick. While some people exhibit symptoms, including the classic “bull’s eye” rash, early after a tick bite, it’s possible that symptoms won’t show up for months or years after being infected.
Furthermore, some patients are treated early with antibiotics, but those antibiotics don’t completely destroy the Lyme Borrelia bacteria, or other symptoms occur even when no sign of any lingering infection remains.
“Chronic” Lyme Disease Diagnosis Controversy
Although no one denies that some people treated appropriately for Lyme disease go on to have persistent symptoms, there is a huge controversy over what it’s called, what causes it, and how it’s best treated. It has been called “chronic Lyme disease”; the Centers for Disease Control and Prevention (CDC) calls it post-treatment Lyme disease syndrome (PTLDS).
Using the term “chronic” suggests that an infection and inflammation are still present, but for PTLDS, there is little evidence that this is the case. The debate is less about whether patients are still suffering physical symptoms and more about if it’s caused by persistent infection and whether people with PTLDS should be treated with antibiotics—a treatment that may not only be ill-advised but could create bigger problems for these patients.
Further, healthcare professionals who treat PTLDS with long-term antibiotics may be putting their patients at unnecessary risk and increasing rates of antibiotic-resistant bacteria.
Pursuing the Chronic Diagnosis
If you believe you do have PTLDS, or chronic Lyme disease, find a healthcare provider who understands the current science behind Lyme disease and post-treatment Lyme disease syndrome, even if they won’t call it chronic Lyme.
Read more about preventing lyme disease.
