Lyme disease can present with a wide range of symptoms, resulting in frequent misdiagnosis. The most common presentation includes fever, fatigue, headache, and a bull-eye rash at the location of infection, but as many as half of infected individuals never report a rash and present with other symptoms.
And, you may be surprised to hear that the most diagnosed illness on CrowdMed is Lyme disease. The issue of misdiagnosing and not even arriving at a diagnosis at all when someone has Lyme disease is clearly a problem.
EDITOR UPDATE: Several readers pointed out some outdated information referenced in the original overview. There’s nothing worse for patients than trying to fight prevailing “wisdom” in the medical community, which simply isn’t true anymore. We’ve updated this post accordingly. By the way, we’ll also soon be publishing an article by one of our patients, highlighting her personal experience and frustration with Lyme disease. Stay tuned!
1. Lyme Disease is named after a town in Connecticut
During the summer and early fall of 1972, an outbreak of arthritis occurred in eastern counties of Connecticut, centered on a town named Old Lyme. At least 51 individuals were identified with similar symptoms including recurrent joint pain and swelling, particularly in the knee.
Many of the individuals had recurrent episodes of these asymmetrical joint pains, but others reported only one episode. Approximately 25% of them had noticed a red lesion preceding the joint pains, and the typical lesion would start small and spread as large as 50 centimeters in diameter. Along four particular roads in Lyme, 1 in 10 children reported symptoms of this mysterious arthritis. Transmission and spread of the disease seemed to be through an arthropod, and was later determined in 1981 to be spread via the deer-tick, or Ixodes scapularis.
2. Lyme disease is most common in the Northeast and upper Midwest
95% of Lyme diseases cases in 2013 occurred in 14 states in the United States, primarily concentrated in the Northeast, Minnesota, and Wisconsin. However, like most insect-borne contagions, Lyme is spreading. There are increasing numbers of cases around the country, as you can see in this map from the CDC. While Lyme infection is much less likely outside of the northwest and midwest regions of the United States, Lyme should not be ruled out by physicians when patients report symptoms of joint pain, fatigue and fever, particularly if the individual has either recently traveled to Northeastern states, or is often active outdoors.
3. You should always take precautions before and after outdoor activities
Unfortunately, the ticks that transmit the Lyme disease bacteria are often very small and hard to identify.
If you plan to adventure through wooded areas, particularly during the spring and summer, you should wear full-length pants and sleeves, and perform full body inspections after potential exposure. Ticks prefer to hide in damp, moist crevices of the body, and you may need to recruit help from a family member to complete a thorough inspection. Using these preventative strategies is the best way to avoid Lyme disease.
If you’ve been bitten by a tick, consult with your physician to determine a course of action.
4. Untreated Lyme disease can deteriorate the heart, nervous system, joints and muscles, and cause numerous other chronic issues
The most common symptoms associated with Lyme disease include aches, fatigue, fever, and rash. A typical treatment for Lyme disease are antibiotics, which often resolve the symptoms and root infection.
Untreated Lyme disease, however, can present with more serious effects. For example, Lyme carditis may occur, with arrhythmias resulting from inflammation of the muscle in the heart. Additionally, untreated Lyme may cause neurologic symptoms, including Bells-Palsy with one-sided facial droop, meningitis, or peripheral nerve pain. At this point in the course of the infection, treatment is more complex and may involve a multidrug approach.
5. Lyme blood tests have been inaccurate
Unfortunately the initial blood test for Lyme disease can give incorrect results. This is due to several issues. If testing is done too early, the immune system may not have mounted a large enough response to generate a “positive” test result, which is based on antibodies generated against the bacteria in the blood. Also, the capabilities of particularly older tests were limited.
With any suspected Lyme symptoms, it is appropriate to perform the blood tests for Lyme. One positive test result should be confirmed with an additional test. If test results are negative but Lyme is still suspected, repeat testing may be warranted.
6. We need more research on “chronic” Lyme disease
Approximately 10-20% of individuals infected with Lyme disease report incomplete recovery, even after a full course of antibiotics. The underlying cause of the persistent pain and fatigue experienced by this subset of patients is a subject of debate in the medical community. Some studies, for example, have shown that individuals who continue to receive antibiotics for their Lyme disease have no better outcomes than those who receive only one initial course of antibiotics. This is one of those areas in medicine where traditional views will most likely be challenged as new information and data collected from patients comes to light.
Because of the current information related to long-term Lyme treatment, many physicians will not prescribe antibiotics long-term. To many patients, this seems like a dismissal of their continued symptoms, and causes a lot of frustration for patients who feel their doctors aren’t giving them the attention and support they need. This issue in medicine, combined with sometimes permanent inflammation and changes in the nervous system that can continue to cause pain, even after the infection has been cleared, only adds to patient frustration.
Lyme disease is a serious bacterial infection that can cause permanent damage to patients’ nervous systems, heart, joints and other organs if left untreated. If you have been exposed to tick-infested woods or grasses and have any of the symptoms suggested by this article, talk to your doctor. You’ll also want to be sure your physician is familiar with the latest testing procedures for Lyme, to reduce the potential of inaccurate test results that could potentially leave you suffering with undiagnosed Lyme disease.
– Centers of Disease Control and Prevention. (2015) Lyme Disease. Retrieved from http://www.cdc.gov/lyme/
– Feder HM, Johnson BJB, O’Connell S, Shapiro ED, Steere AC, Wormser GP. A Critical Appraisal of “Chronic Lyme Disease.” New England Journal of Medicine. 2007;357(14):1422-1430. doi:10.1056/NEJMra072023.
– Lyme disease. In DynaMed [database online]. EBSCO Information Services.http://search.ebscohost.com.ezproxy.bu.edu/login.aspx?direct=true&site=DynaMed&id=114365. Updated October 24, 2014. Accessed February 22, 2015.
– Steere AC, Malawista SE, Snydman DR, et al. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three connecticut communities. Arthritis Rheum. 1977;20(1):7-17.
– Tilly K, Rosa PA, Stewart PE. Biology of Infection with Borrelia burgdorferi. Infectious Disease Clinics of North America. 2008;22(2):217-234. doi:10.1016/j.idc.2007.12.013.