The bestselling novelist Amy Tan recalls seeing a bright red rash on her shin in 1999 and assuming it was a spider bite. Soon, she came down with flu-like symptoms, and in the years since her health worsened.
By the time a doctor finally diagnosed Tan with Lyme disease, the infection had reached her brain. She had been suffering hallucinations, seizures, and brain lesions after being misdiagnosed by doctors for four years. Tan describes the devastating health effects she says were traced to the disease in a blog post on her website.
“Like many chronic Lyme disease patients, I was launched into a medical maze, searching for answers as things worsened,” Tan writes.
It’s unclear how common cases like Tan’s are, but the Centers for Disease Control and Prevention (CDC) has recently announced that Lyme disease may be ten times more common than previously thought.
Tick-borne diseases are steadily rising
As tick season unofficially kicks off this year, the CDC and other experts warn that Lyme disease and other tick-borne illnesses pose serious risks, particularly for people in the Northeast, mid-Atlantic and upper Midwest. But many patients and doctors have difficulty detecting the disease after infection.
“Each year, more than 30,000 cases of Lyme disease are reported nationwide, while studies suggest the actual number of people diagnosed with Lyme disease is more likely about 300,000,” the CDC announced this weekend.
The agency has been warning the public to watch out for ticks and using photographs of a poppy seed muffin with ticks hiding on top to get its point across.
In addition to the known risky areas in humid parts of the United States, cases may also be appearing on the West Coast and other areas that were thought to be lower risk. Regardless of location, the CDC says that most people do not take steps to prevent Lyme disease.
Difficult to diagnose
The CDC is telling people to avoid areas with high grass or leaf litter, to walk in the center of the trail when hiking and to be vigilant about bug spray. Pets are also vulnerable to Lyme disease and should receive prompt treatment for any tick bites.
The American Lyme Disease Foundation says that clinicians can have difficulty correctly diagnosing patients with Lyme disease “due to its diverse manifestations and the limitations of currently available serological (blood) tests.” The tests that are available to doctors are not always accurate, they add.
Lyme disease typically begins with a rash and fever-like symptoms. If left untreated, victims can experience neurological symptoms as the infection spreads to their brain. The disease can be managed with antibiotics, but going too long without treatment may leave sufferers with lifelong health issues.
When Tan initially raised concerns with her doctors that her symptoms may be consistent with Lyme disease, she says that they had brushed her off. It was her own sleuthing that led her to what she describes as a “Lyme-literate physician” in San Francisco who diagnosed her with late-stage neurological Lyme disease.
He put her on a $500 monthly antibiotic treatment that was not covered by insurance. Slowly but surely, she writes, the “fog” was lifted. After two years, she finally felt healthy again.
The importance of being tested
Still, Tan says the treatment has only been able to manage the disease, not cure it. She no longer drives for fear of suffering a seizure behind the wheel and still depends on antibiotics to control the symptoms. Fearing that she may develop a resistance to the antibiotics, she has renovated her house to make it handicap-accessible.
“If you've read this and think you may have Lyme disease, get tested by a Lyme literate physician, one who does not tell you the disease is rare,” Tan writes.
“If you know someone with Lyme disease, be compassionate and patient. And if you are in the throes of the disease and feel like things will never get better, take hope from me.“