Lyme Disease: The First Sign is Not Always a Rash

Lyme disease, deer tick

Lyme disease is a bacterial infection caused by ticks, primarily from an infected deer tick. Lyme disease infects approximately 300,000 people each year according to the Centers for Disease Control and Prevention (CDC). However, some experts believe that the number is much higher since fewer than half will develop the bull’s-eye rash that is the well-known early sign of the disease. Lyme disease is commonly misdiagnosed when there is no bull’s eye rash. When these patients go to their doctor for other symptoms, it can take months or even years for them to be diagnosed with Lyme disease.[1]

Part of the problem is the lack of an accurate test.  The most common test for Lyme disease has at least a 35% chance of missing the disease. Delaying the treatment for Lyme disease can make it much more difficult to treat. When Lyme is not treated quickly and effectively, patients can have long-term serious health problems that experts refer to as either post-Lyme syndrome, chronic Lyme disease, or multiple chronic infection disease syndrome (MCIDS).

Common Signs and Symptoms

  1. Bulls-eye rash (fewer than 50% of  infected people will get the rash)
  2. History of tick bite (not all patients recall a bite or think it likely they were exposed to a tick)
  3. Flu-like symptoms
  4. Fever
  5. Headache
  6. Extreme fatigue
  7. Pain in the neck, back, joint, bone or jaw.
  8. Chest pain
  9. Heart attack like symptoms
  10. Eye floaters
  11. Tingling or numbness in hands and/or feet
  12. Inability to fall asleep or stay asleep
  13. Night and/or day sweats

Diagnosis and Treatments

The laboratory tests for Lyme disease have high levels of false negatives (which means that the test fails to recognize the disease) so often doctors will diagnose Lyme disease based on clinical symptoms, particularly if you have a bulls-eye rash or recent tick exposure. Early treatment increases your chances of a full recovery from Lyme disease, but the diagnostic tests are less accurate in early stages of the disease. Unfortunately, many insurance policies won’t pay for treatment without a test indicating the disease. The treatment for Lyme disease caught early is a several week course of antibiotics. However, since the test is often inaccurate in the early stages, many patients are not diagnosed early enough to benefit from standard antibiotic treatment.

Antibiotics are the first line of treatment, but do not always cure a Lyme disease infection or prevent later health problems. Symptoms such as fatigue or joint pain may return months after the initial infection has been treated. It is not clear whether these symptoms are caused by damage to your joints and immune system during the original infection or if it is due to ongoing infection. A long-term course of antibiotics might be suggested to treat the illness, however the effectiveness is controversial so insurance companies may refuse to pay for this treatment. It is unknown how many patients with long-term health problems due to Lyme disease with improve with time.

Related Infections

There are other diseases carried by ticks that can also infect humans, such as Babesia or Bartonella. Lyme disease patients often are infected with more than one of these infections at the same time. If you suffer from Lyme disease on a long-term basis, it is important to talk to your doctor about the possibility that you also have one or more of these other infections.

Chronic Lyme Disease

When Lyme disease goes undiagnosed, it can be much more difficult to treat effectively.  If the disease is not treated immediately and effectively, that can lead to a chronic infection, characterized by headaches, debilitating joint pain, and severe fatigue.  However, the diagnosis of chronic Lyme disease is controversial because it can be very difficult to prove Lyme disease caused the symptoms.[2]


There are many steps you can take to reduce your risk for Lyme disease. Lyme disease has been diagnosed for individuals who spent time outdoors anywhere in the U.S., although the risks may still be higher in the Northeast from Virginia to Maine, or the West coast. To reduce your chances of getting Lyme disease when you spend time in or near wooded areas, make sure you wear light colored clothing that covers your skin and use insect repellent. Be sure to check yourself and any loved ones for ticks as soon as possible after you get inside. The chances of developing Lyme are highest if the tick is attached for at least 24-48 hours in order to spread the disease, so if you see them early try to remove them before they can infect you. The best way to avoid Lyme disease is prevention.

Research published in 2014 shows that Lyme disease can potentially be sexually transmitted.[3] So, if you or a sexual partner has Lyme disease, be sure to use protection until the infection has been cured.

More information about signs and symptoms can be found here.

All articles are reviewed and approved by Dr. Diana Zuckerman and other senior staff

  1. Schuster JL. This tiny bug is at the root of a big controversy over Lyme disease. The Washington Post. Sept 16, 2014