The federal government reports that cases of Lyme disease are on the rise, but many patients and researchers are finding that physicians are skeptical in diagnosing the deer tick-borne disease.
"It's very serious," Marina Makous, a family medicine doctor in Exton, Pennsylvania, told NBC News. She is a former fellow at the Neuroinflammatory Diseases Center at Columbia University’s Lyme and Tick-Borne Diseases Research Center.
"There is an underappreciation of the seriousness of this illness, especially when [physicians] don't treat patients with Lyme disease on a daily basis," she said.
The Centers for Disease Control and Prevention issued an updated warning last month that insect-borne diseases, especially those spread by ticks, are on the rise, having more than doubled from 2004 to 2016.
Warmer weather is an important cause of the increased cases reported to the agency, according to The New York Times.
"You can think of ticks as dirty needles," Makous told NBC. "They carry multiple pathogens and can transmit other things that make it more difficult for the immune system to fight off Lyme disease."
Lyme disease is caused by a spiral-shaped bacteria called Borelia burgdorferi. It is found in the saliva of the blacklegged tick, more commonly known as a deer tick.
The bacteria spreads rapidly and has complex survival mechanisms, according to the NBC report.
Though most physicians believe it can be eradicated with antibiotics, the bacteria has been shown to return after treatment in the blood and tissue of animals and humans.
Numerous patients say they live with chronic, persistent symptoms — and have had difficulty being diagnosed by their doctors.
"I’m one of the rare cases where you have an unequivocal diagnosis," Porochista Khakpour, a New York writer and author, told NBC. "People have put that at less than 10 percent."
After 12 years of trying to find out why she was having a range of physical ailments — from convulsions to debilitating fatigue — she learned in 2012 that she had Lyme disease after expensive blood tests from a private blood-testing company.
In her new book, "Sick: A Memoir," Khakpour, 40, wrote that Lyme disease "is thought of as the disease of hypochondriacs and alarmists and rich people who have the money and time to go chasing the diagnosis."
Khakpour was bitten by a deer tick — and she is among the fewer than 50 percent of people with Lyme who do not remember being infected that way or seeing the famed "bulls-eye" rash typically associated with the disease.
She added that doctors often diagnosed her problems as psychiatric.
"But that didn't explain to me why I would have fever, or why my body would be in convulsions, why I would develop these huge allergies," Khakpour told NBC. "Then they'd say, 'Well, the mind is very strong you know.'"
Makous called Lyme disease "the great imitator," noting that initial treatments "may blunt the development of antibodies."
Future tests could turn up negative, she added, though the bacteria may linger in the body.
"It’s a multi-systemic disease," Makous explained. "There aren’t specific symptoms unique only to Lyme.
"It can look like stroke, like Alzheimer’s, like vasculitis, like neuropathy."
Makous noted that singer-songwriter Kris Kristofferson's Lyme disease was initially misdiagnosed as Alzheimer’s in 2016.
Psychiatric symptoms like depression and anxiety could also result from Lyme — and Makous said she has seen increased signs of suicide in such patients, along with facial weakness, headaches, sensory disturbances and cognitive problems.
Khakpour, however, worries that she may never get truly better, telling NBC that she has resigned herself to living with the long-term effects of Lyme disease.
"It never seems to go away," she said, "the feeling that as much as I achieve or as strong as I can be, this disease is smarter."
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