Lyme disease is caused by borrelia bacteria and is typically spread to humans through tick bites. Ticks that carry this bacteria live throughout the U.S., but Lyme disease is most common in the Northeast, the Upper Midwest, and the Northwest, as well as in southeastern and south-central Canada and across parts of Europe.

People who live or spend time in bushy, grassy, or wooded areas are at risk of developing Lyme disease. It is not always easy to diagnose, so knowing what to look for is crucial to getting prompt treatment.

Diagnosis in Stage 1

Diagnosis of lyme disease at any stage is primarily based on symptoms and the likelihood that the person was exposed to a tick. There are multiple stages, and the symptoms can overlap.

In the first stage of Lyme disease, you may notice a small, itchy bump on your skin where the tick bit you, though it may be difficult to distinguish it from a mosquito bite. Other symptoms usually appear within three to 30 days after the bite.

A common sign of Lyme disease at this stage is a rash that starts as a small spot at the bite site that slowly spreads outward and may become clear in the center, taking on the look of the classic bullseye rash that Lyme disease is known for. Other symptoms around this time might include muscle aches and pain, headache, fever, joint stiffness, tiredness, and swollen lymph nodes.

However, not everyone with Lyme disease gets a rash, and some people are asymptomatic at this stage.

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Blood Testing

There is a two-step blood test available for Lyme disease, but blood testing is not always helpful in the first stage. It can take weeks for the antibodies to develop, and early blood tests can return a negative result. If your doctor suspects you have Lyme disease and the blood test is negative, they may repeat it in three or four weeks.

However, if you are treated for Lyme disease in the meantime, the test results will likely remain negative, even if you had an active Lyme infection. Even in later stages, blood tests for Lyme disease can be unreliable. A negative test does not always rule out Lyme disease, so doctors consider other factors, like health history, tick exposure risk, and symptoms.

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Diagnosis in Stage 2

If untreated, stage 1 Lyme disease usually advances. Stage 2 is called early disseminated Lyme disease. In this stage, the infection has spread, and your doctor will likely do blood testing and look for other symptoms, including more than one bullseye rash, numbness or tingling in the arms and legs, facial weakness or drooping, and pain in the muscles, joints, tendons, and bones.

At this stage, Lyme disease can spread to the brain and cause inflammation, which results in symptoms like neck stiffness, severe headache, and sensitivity to sound and light. If it spreads to the heart, it can cause heart palpitations, dizziness, irregular heartbeats, shortness of breath, or fainting. This stage can occur weeks to months after a tick bite.

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Diagnosis in Stage 3

Stage 3 is called late disseminated Lyme disease and occurs months to years after the initial tick bite. In this stage, the condition has continued to spread, and symptoms may be severe. For diagnosis, doctors will likely order blood testing and look for arthritis with swelling, warmth, and pain; concentration and memory issues; nerve pain, numbness, tingling, stabbing, or burning in the feet and hands; mental health changes, like anxiety, depression, or mood swings; and sleep disturbances.

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Challenges with Diagnosing Lyme Disease

The most challenging thing about diagnosing Lyme disease for practitioners is that other than the bullseye rash, there are no specific symptoms. Diagnosis relies on clinical signs that may or may not be supported by the results of a blood test, and, unfortunately, research shows that emergency room physicians are not always able to diagnose Lyme disease based on clinical judgment alone.

Research also shows that 40 percent of patients diagnosed with Lyme disease have signs of stage 2 or 3, indicating that a delayed diagnosis is pretty standard.

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The Need for More Accurate Lyme Disease Testing

One of the reasons for delayed diagnosis is the lack of a highly reliable test. While doctors can use many lab tests to diagnose other bacterial infections, this is not the case with the bacteria that cause Lyme disease. The type of blood cultures used for other bacteria can return results in a few days, but for the bacteria that cause Lyme disease, they can take as long as 12 weeks to produce a result, which is not quick enough to be helpful for treatment.

Skin biopsy of the bullseye rash is more reliable, but not everyone gets this rash, and it is an invasive step for patients who are showing clear signs of Lyme disease and would not require lab confirmation anyway. Researchers are currently trying to develop new detection methods.

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Antibiotic Treatment

The standard treatment for Lyme disease is antibiotics. Usually, the patient takes them in the form of a pill for as long as 14 days. Depending on the severity of symptoms, some people may need more prolonged treatment. IV antibiotics may be necessary for people with symptoms affecting the heart, nervous system, or joints.

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Preventative Antibiotics

Some doctors treat patients using preventative antibiotics, but only if specific conditions are met that indicate it is highly likely that the person has Lyme disease. For preventative antibiotic treatment, the person must have been bitten by a deer tick, live in or have visited an area where Lyme disease is common, and have had the tick attached to the skin for at least 36 hours.

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Alternative Treatments

Antibiotics are the only successful way to cure Lyme disease. The only thing you can do at home for Lyme disease is attempt to remove the tick. If you are successful, you can keep it and take it to your doctor. The tick can be evaluated in a lab and may help confirm a diagnosis.

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Post-Treatment Lyme Disease Syndrome

Post-treatment Lyme disease syndrome (PTLD) occurs when people are treated with a full course of antibiotics that lasts from two to four weeks and still have symptoms like brain fog, pain, and fatigue for more than six months after finishing treatment. The cause of PTLD is unknown, but some researchers believe it is caused by either a persistent infection that's difficult to detect or an autoimmune response.

There are no known treatments for PTLD. Prolonged antibiotics were not effective in studies. Symptoms usually improve over time, but recovery can take months.

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