- Lyme disease can be difficult to diagnose because symptoms can mimic other disorders
- If left untreated or misdiagnosed, the infection can affect the neurologic system.
- Visit your primary care doctor for a Lyme screening test if you have had potential exposure.
Last night, I watched a documentary about author Amy Tan. During the course of the documentary, Tan discussed the traumas she experienced growing up in a high achieving family of immigrants, and never feeling “good enough.”
One of the traumas she experienced occurred later in her life, after she developed symptoms that were out of her character and made no sense. They were unnerving.
In an article in the New York Times, she wrote:
I was plagued by a variety of ailments that didn’t quite fit any one disease. I suffered joint pain, head, and muscle aches, insomnia, a racing heart, a gagging sensitivity to smells, constant nausea and exhaustion, plunging blood sugar, seizures, and an obsession with my unknown illness.
Worst of all, I could not read a paragraph and recall what it said. I wrote in circles, unable to tie two thoughts together, never mind the plot of a novel. Yet, outwardly, I looked normal—just a bit listless and tired, at times apathetic then overly emotional.
Four years earlier, she attended a friend’s family wedding in upstate New York. The day after the wedding, she saw a bright red rash on her shin. She thought briefly about Lyme disease but believed her rash was not the classic “bullseye” lesion described in the literature. Instead, the rash had a black speck in the center, so Tan believed it was a spider bite. In addition to the rash, she developed symptoms similar to the flu. She was not alarmed because the symptoms disappeared within a day.
In the years that followed, Tan experienced headaches, insomnia, muscle aches, fatigue, and jitteriness. At her annual physical, she told her primary care doctor about tingling and numbness in her feet. Her doctor explained she had neuropathy. Tan reported a history of a rash and asked whether all of her symptoms might be related. “No,” her doctor replied, dismissing her concerns.
In search of an answer, Tan visited multiple specialists. She told her husband she believed something in her body was broken. At one point, her blood sugar plunged so low that her doctor recommended hospitalization. An MRI of her brain showed 14 abnormal lesions. Her doctors told her, “it’s normal for someone your age.” She was 49.
She experienced unpleasant smells, developed seizures, and hallucinated upside-down poodles. Her concentration waned. She became lost in her own neighborhood, where she had lived for over 30 years.
The physicians Tan consulted were experts in their fields, and although they never raised the possibility that she was creating her symptoms, they also never considered Lyme to be the cause. As a result, she was never tested for it. Her doctors told her the likelihood she had Lyme was very small because she lived in California, where Lyme disease was not prevalent.
Although she reminded her doctors she had a home in upstate New York, her concerns were dismissed. At one point, she was given an ELISA test, one of the initial screening tests for Lyme as well as other similar disorders. It came back negative. She asked about the accuracy of the test, and was told she hadn’t been tested for Lyme, but for another disorder caused by the same type of bacteria—syphilis. Great she thought, she didn’t have syphilis, but what did she have?
After months of searching for answers, Tan conducted her own research and read about the lack of accuracy of ELISA tests, particularly in individuals with late-stage Lyme. She found a doctor with expertise in treating Lyme disease and confirmed her diagnosis with a more specific test. After a course of antibiotics, she felt better, but it took almost two years for her to feel well. Unfortunately, she has residual symptoms because it took so long to receive appropriate care.
What Is Lyme Disease and Why Is a Psychiatrist Writing About It?
Many psychiatrists see patients with documented or suspected Lyme disease because of the significant overlap in symptoms between Lyme disease and common psychiatric disorders such as anxiety and depression.
A bacterium that causes Lyme disease is called a spirochete (the same type of bacteria that causes syphilis). Interestingly, syphilis used to be called “the great imitator,” just like Lyme disease, because the symptoms mimic many other illnesses. Deer ticks transmit the bacteria. Lyme disease bacteria can cause a wide array of symptoms. It is commonly associated with a classic bullseye lesion. However, most individuals who are affected do not recall being bitten by a tick.
Shortly after the initial infection, the second stage of early Lyme disease begins. The bacteria spread through the bloodstream and affects distant organs. During this stage, varied symptoms begin, and the clinical picture mimics various illnesses, leading to possible misdiagnosis. Sometimes facial rashes occur. This, in combination with other symptoms such as fever, chills, headache, and joint and muscle aches, often leads to suspicion of an autoimmune disorder.
Left untreated or misdiagnosed, the infection can affect the neurologic system as well as the heart. Recall Tan’s history of seizures, confusion, and, ultimately, hallucinations. Late-stage Lyme disease can produce unrelenting arthritis and, in rare cases, a disfiguring skin condition.
Because the symptoms are so varied, and may worsen or improve, 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 infection.
Infection with the bacteria occurs in stages. Depending upon when an individual presents to a caregiver, the history and physical may look and sound very different, contributing to the confusion for the patient and the medical professional.
Diagnosis of Lyme Disease
In the 1990s, the Centers For Disease Control (CDC) adopted a two-tiered strategy for testing. This entails first ordering a test called ELISA. If these tests are negative, no further testing is recommended. A second test called the Western blot should be ordered if the test result is equivocal or positive. 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.
Time Is of the Essence
Summer is a booming time of year for tick populations across the country, and tick bites are common. Some people are unaware of a tick bite at first. Be sure to check yourself and your children often, especially during the summer when tick populations grow. Ticks are especially attracted to warm, moist areas of the skin like armpits, groins, or hair.
Once they bite you, a tick may stick around, drawing your blood for up to 10 days. The sooner you spot and remove a tick, the better. If in doubt, check it out. Visit your primary care doctor for a Lyme screening test. This is the best method of avoiding long-term symptoms that may not be recognized as secondary to an earlier infection.
Van Hout, Marie Claire. (2018). The Controversies, Challenges and Complexities of Lyme Disease: A Narrative Review. J Pharm Sci 21, 429 - 436,