Press materials for the book, obtained by Us Weekly, talk about how it took Hadid a year to get a diagnosis, something she also mentioned on her Bravo blog last year. “I wasted the first year trying to get diagnosed and spent the next two trying to find a cure,” she wrote. “I have gone from the conventional long-term antibiotics to about every holistic protocol there is to offer.”
Avril Lavigne, who has also been candid about her struggle with Lyme disease, says it took her time to get a diagnosis, too. Lavigne told ABC News last year that she would wake up with night sweats and felt like she had the flu on and off for a month. “I saw my doctor right away, got blood tests, got swabbed, and they didn’t really know what was wrong with me,” she says, noting that she visited several different doctors who said the same thing. After two months, she suspected she had Lyme disease, but it wasn’t until she visited a specialist that she received a diagnosis.
Luckily, this long journey to a diagnosis is atypical. “It isn’t common for a Lyme disease diagnosis to take a year,” board-certified infectious disease specialist Amesh A. Adalja, M.D., an assistant professor at the University of Pittsburgh Medical Center, tells SELF. “But you have to think about Lyme disease to test for it.”
Since Hadid and Lavigne live in the Los Angeles area, it’s possible that Lyme disease wasn’t even on their doctors’ radars because it’s not common in that region. Plus, Adalja says, people may receive negative results on a Lyme disease blood test in the first few weeks after contracting the disease because their bodies haven’t yet responded, further complicating things.
The symptoms of Lyme disease can also change over time. “Lyme disease is not a simple thing,” Adalja says. “It goes through different stages.” In the early stage, which the Centers for Disease Control and Prevention says happens three to 30 days after a person is bitten by a tick, someone may have the stereotypical “bulls-eye” rash as well as flu-like symptoms and muscle and joint pain. In the later stage, a patient may experience pain or weakness in the arms and legs, headaches, problems with short-term memory, tingling in their hands and feet, and even heart problems.
“Lyme disease can go undetected and, with time, the symptoms can become chronic, making diagnosis difficult,” Russ Kino, M.D., medical director of the Weingart Foundation Emergency Department at California’s Providence Saint John’s Health Center, tells SELF. “But usually it’s picked up in the acute, early phase.”
Infectious disease specialist Mark Hicar, M.D., Ph.D., assistant professor in the department of pediatrics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, tells SELF that it’s “extreme” to take up to a year to get a diagnosis. However, he adds, “there are always outlier cases that can take a long time to diagnosis.”
Adalja stresses that most people are diagnosed and treated for the disease quickly. “If you’re in a Lyme endemic area, some doctors will treat for the disease and repeat the blood work several weeks later to show that the symptoms were consistent with Lyme disease,” he says. That treatment usually involves antibiotics for 10 to 14 days if you’re in the early stage of Lyme disease and up to four weeks of antibiotics if your Lyme disease is more advanced.
After that, people are typically cured, Hicar says: “The overwhelming majority have no issues after the acute illness is treated.”
Kino says the average person shouldn’t stress about contracting Lyme disease. “Only about one percent of people who are bitten by a tick actually get Lyme disease,” he says. But to lower the odds it will happen to you, he recommends covering up if you’re planning to go in the woods, wearing light clothing (so you can better see ticks), wearing tick-repelling DEET, and doing a thorough inspection of your body—particularly your armpits, groin, and legs—when you get home.
If you do develop signs of Lyme disease, don’t panic. “It’s very treatable and is usually resolved with antibiotics,” Kino says