Best-selling novelist Amy Tan suffered unexplained symptoms and went undiagnosed for years, her concerns dismissed by doctor after doctor. Popular singer Avril Lavigne was bedridden for years, at one point having to “accept that she was dying.” The cause? Lyme disease.
Tan’s struggle to get diagnosed with Lyme disease is an all too common problem. Although many people are familiar with the bulls-eye rash and flu-like fever of Lyme disease, in reality, oftentimes patients experience symptoms that vary from the norm, because of Lyme disease’s reputation as “The Great Imitator.”
Lyme disease is caused by a bacteria called a spirochete, the same type of bacteria that causes syphilis. Interestingly, syphilis used to be called “The Great Imitator” just like Lyme disease is called now because the symptoms mimic many other illnesses. The bacteria, Borrelia burgdorferi, is transmitted by deer ticks. Lyme disease bacteria can cause a wide array of symptoms. It is commonly associated with the classic bullseye lesion. However, most individuals who have been affected do not recall being bitten by a tick, making Lyme disease that much harder to diagnose.
Most people infected with B. burgdorferi exhibit one or more clinical characteristics of Lyme disease. Similar to many other infections involving these types of bacteria, the clinical manifestations of Lyme disease occur in various phases, each with the potential for remission and exacerbation of symptoms. Because the symptoms are so varied, and because they may worsen or lessen, it is easy to understand why patients with this diagnosis are often dismissed or misdiagnosed. This is particularly true if the classic target lesion is not found, or if the patient does not reside in an area known to be a hotspot for Lyme, such as the Northeast, upper Midwest, and northwestern states.
Infection with the bacteria occurs in stages and depending upon when an individual presents to a caregiver, the history and physical appearance may look and sound very different, contributing to the confusion for the patient and the medical professional.
The first part of early infection is called the localized stage and is recognized by the presence of an expanding red skin lesion occurring at the site of the tick bite. The rash, which occurs in approximately 75% of patients, can occur up to thirty days after being bitten by a tick. However, due to the small size of the tick as well as the lack of pain or itching at the site, only about one-third of those affected will recall having been bitten.
A short time after the initial stage, the second stage of early Lyme disease begins. During this stage, the bacteria spread through the bloodstream and affects distant organs. It is during this stage varied symptoms begin, and the clinical presentation mimics a variety of illnesses leading to a possible misdiagnosis. One-half of infected individuals develop a more widespread rash. Sometimes facial rashes occur. This in combination with other symptoms such as fever, chills, headache, joint and muscle aches, oftentimes leads to suspicion of an autoimmune disorder.
Left untreated, or misdiagnosed, the infection can affect the neurologic system as well as the heart. Late-stage Lyme disease can produce unrelenting arthritis, and in rare cases, a disfiguring skin condition.
Given the sometimes confusing presentation of this disease, as well as an often misleading history, it’s important to know how Lyme disease is diagnosed. In the 1990s, in an effort to improve specificity, the Centers For Disease Control (CDC) adopted the two-tiered strategy for testing. This entails first ordering a test called ELISA. If these tests are negative, no further testing is recommended. If the test result is equivocal or positive, then a second test called the Western blot should be ordered. A positive Western blot could result in an elevation of one or more of your antibodies called IgM or IgG. If the exposure is recent, and a positive IgM or IgG result is detected, there is good evidence a recent infection occurred. If the infection is greater than four weeks old, and a positive IgG result is present, this is good evidence of current or previous infection. Because the IgM tests are less specific than the IgG-based tests, the CDC recommends using only IgG results if the infection is older than four weeks.
While a formal procedure of diagnosis has been developed, there is often a frustrating amount of time before ever getting to this testing process. According to the CDC, there are around 30,000 cases of Lyme disease reported a year, but this fails to reflect every actual existing case. Additionally, just like Amy Tan, a large number of patients with Lyme disease report being misdiagnosed early on, and therefore struggle with the disease much longer than they should.
Though Lyme may be “The Great Imitator,” there is a growing movement of Lyme-literate healthcare professionals, making sure those with Lyme receive the proper diagnosis and treatment that they need.
Thumbnail Credit: Andreyoskirko
Susan B. Trachman, MD is a practicing psychiatrist with over 30 years of experience who is passionate about exploring medically unexplained illnesses through the lens of psychiatry. In addition to private practice, she is an Assistant Clinical Professor of Psychiatry at Virginia Commonwealth University and Clinical Associate Professor of Psychiatry at George Washington University, where she teaches medical students, residents, and post-residency fellows in psychiatry. For more, visit susanbtrachmanmd.com
It’s not as as simple as being diagnosed and then treated with 3 weeks of antibiotics. If you are foolish enough to believe that, you are gaslighting your patients worse than the doctors that can’t even make a diagnosis.
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