“But once they put epilepsy down (on my chart), at least I had turned a corner where they had a label on something,” Tait continued. “Then (my doctors) would just add things — ‘You have fibromyalgia and you probably also have chronic fatigue syndrome.’ But they didn’t tell me how to fix it. Everything was, ‘Try antidepressants because we don’t really know.’”

She got married and after several miscarriages, gave birth to two sons. Throughout the years, Tait received various diagnoses and was prescribed multiple medications, but nothing made her completely healthy. She was still sick.

Why is Lyme disease so difficult to diagnose?

Lyme disease is a bacterial infection transmitted through the bite of infected deer ticks. One common symptom of Lyme is a red rash on the skin (often called a bulls-eye rash, although the rash doesn’t always have a ring-within-a-ring appearance), that appears at the site of a tick bite usually within a week, but up to a month later. Some people may not experience a rash, or may mistake it for a spider bite. Other symptoms like fever, chills, headache, fatigue, joint aches and swollen lymph nodes may occur in the absence of a rash, according to the Centers for Disease Control and Prevention.

If Lyme is not diagnosed immediately, the bacteria start to spread to other parts of the body — the joints, the nervous system and the heart. Eventually, arthritis sets in, along with extreme fatigue and general aches and pains. These can also be symptoms of other conditions, which is part of the reason why Lyme is difficult to diagnose. Aside from the initial rash, there are no symptoms that are specifically indicative of Lyme disease.

There’s also no definitive way to test for Lyme disease. There is no direct blood test for the bacteria that causes Lyme. Doctors have to rely on antibody tests, which merely measure the immune system’s response to the bacteria. Further complicating matters, studies have shown that those tests aren’t always accurate and can have poor sensitivity and false results in some cases.

“Antibody tests are indirect tests,” said Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center in Baltimore, Maryland. “They only measure whether the person has been exposed to the infection, but it doesn’t tell you if that exposure was six months ago or six years ago. And the test for exposure doesn’t tell you if you still have an active infection. What we want is a direct test that actually measures the presence of the bacteria. Like you would get if you had a urine culture for a urinary infection.”

Until a foolproof test exists, diagnosing Lyme disease, especially late-stage Lyme, is an imperfect science.

Tait takes many medications and supplements to treat her various symptoms. TODAY

How Stephanie got answers

About four years ago, Tait started to suspect she had Lyme disease. A family friend had Lyme, and Tait recognized some of her own symptoms appearing in her friend. She asked her doctor for an ELISA, an enzyme-linked immunosorbent assay, or a blood test that’s typically the first way doctors test patients who may have Lyme disease. When she learned her insurance wouldn’t cover the cost, she paid for the test out of pocket. It came back negative.

Tait, however, wasn’t convinced. She asked for another test, but she said the doctor refused. So she turned to a private lab for a second test, this one a Western Blot, which doctors typically turn to next, to verify a positive ELISA result. That test was positive for the Lyme antibodies.

“I sobbed, because there it was in my hands that I wasn’t just jumping to conclusions,” Tait said. “I walked back into my doctor’s office and said, ‘Here it is.’ They said, ‘Well, we didn’t do this test, so how do we know?’ I said, ‘You’ve got to be kidding me. I have a lab test!’”

Tait started getting treatment at a private clinic in Idaho that specializes in treating Lyme disease, about a six-hour drive from where she lives.

Lyme disease is typically treated with antibiotics, and when treated early, people with Lyme usually recover completely. Tait’s treatment plan included antibiotics, immunotherapy, various supplements as well as dietary changes. But because she had been sick for so long, some of her health problems were irreversible.

“Ultimately, no matter how much work you do to treat Lyme, when you’ve had it for 15 years, that’s bacteria that’s just growing and growing and taking over in your system,” she said. “Some of that damage is just not fixable.”

Today she has heart damage and chronic joint pain and arthritis, as well as aphasia, a language disorder that affects her ability to speak at times. Her home is outfitted with tools that make living with chronic pain and fatigue more bearable — there’s a stool in her shower and a gadget on her bathroom mirror that holds her hair dryer so her arms don’t get tired. There are smart devices throughout her family’s home. Every morning, Amazon's Alexa tells her two sons when it’s time to put their backpacks on and head to the bus stop, just in case Tait isn’t able to get out of bed and see them off. Heating blankets are tucked into nooks in every room.

There are plants throughout the home — all of them are fake, because taking care of real plants requires energy she cannot spare.

“On a day-to-day basis, I can walk around now and masquerade pretty well as a perfectly healthy person,” she said. “If you didn’t know me, you often wouldn’t know.”