The Symptoms

Seven years ago, Leah Ankers, a dog groomer living in Texas, noticed a rash on her leg in the shape of a perfect circle. She didn't think much of it.

"I'd had ringworm before from grooming," she said recently, "so I figured that's all it was."

So did her doctor. She was prescribed a topical medication, but strangely the rash still wasn't gone after a month. Yet it wasn't itchy, so Ankers, then age 19, assumed the medication was working.

Around that same time, she "started to become a different person." Suddenly she became moody and irrational. Her head hurt. Her joints swelled. She grew so exhausted that walking from her car to her apartment put her out of breath.

On a return trip to the doctor, he concluded she must be depressed. She went on an antidepressant and chalked her condition up to homesickness: She missed her family back in Orange County, California, where she grew up.

Looking back on it now though, she labeled that explanation "silly."

"I absolutely loved the life I had created for myself in Texas," she said. "It's funny how you can create excuses in your head."

When the antidepressant failed to help, her days compressed down to work and sleep. She had no energy to see her friends. Pain persisted throughout her body. Fatigue became her new normal.

Reluctant to accept her diminished existence, she embarked on a diagnostic odyssey that led her to various psychiatrists, cardiologists, and neurologists over six years, during which time she endured CAT Scans, brain MRIs, EEGs, EKGs, and blood tests.

"Everyone had the same thing to say," she recalled. "'Your tests are within normal limits so there's nothing blatant going on.'"

Last March, her health took a serious turn for the worse. Weird symptoms cropped up — intense bladder pain and urgency. She had to pee 30 times a day, but tests found nothing abnormal.

Barely able to function, she left Texas and moved back in with her parents in California. Soon she was hospitalized with a severely low heart rate: 28 beats per minute. (Normal is 60 to 100 beats per minute.) But the cardiologist in the ER was dismissive because no cause was apparent. He told her it would probably work itself out.

"It was terrifying," she said. "I became so mistrustful of doctors because I felt like I wasn't being heard."

That was when things got really scary. She was preparing dinner one night when an ominous feeling washed over her like a dark cloud. Then her vision went blurry and she became disoriented. She dropped the pan she was holding and ran into bed. A deafening noise exploded in her head along with bright flashes of white light. When it stopped, her mouth was wet, her limbs were jerking, and there were tears in her eyes.

Her family rushed her to the hospital, but doctors again shrugged it off.

"Stop being dramatic," one told her. "You probably just passed out."

She felt so powerless that she decided to go out of her insurance network and find a doctor who would finally listen.

"Something is not right," she told the new internist at her first appointment. "We have to get to the bottom of this."

The Diagnosis

Taking stock of all of Ankers's disparate symptoms, the new doctor decided to run a test never previously given to her: the IgG and IgM blood tests. These measure immune system antibodies, which are only present in the case of infections. The tests came back positive.

The doctor used her clinical judgment and the lab results to diagnose Ankers with Lyme disease as well as with lupus and borderline rheumatoid arthritis — autoimmune disorders that can be triggered by Lyme.

"I was so relieved and so crushed all at the same time," Ankers said. "What had happened to me throughout my early 20s finally had a name."

Lyme disease is an infection transmitted from the bite of an infected deer tick. Most human cases are caused by bites from ticks in their nymph stage, when they appear no larger than a poppy seed. Because the bites are painless, many people, including Ankers, have no memory of being bitten and may never even notice a tick on their bodies.

But Lyme infects more than 300,000 people a year and is the fastest growing vector-borne infectious disease in the United States, according to the CDC.

Given its prevalence, how could so many doctors have missed it in Ankers?

For one thing, there's a lack of clear-cut diagnostic tests. According to Dr. Joseph Sciabbarrasi, an integrative medicine specialist, the diagnosis of Lyme is never predicated on a single lab test, but rather based on clinical symptoms in conjunction with test results. For example, a patient's blood might be cultured in a lab to see if the Lyme bacteria, called Borrelia, will grow. But depending on a person's degree of infection, the culture could take anywhere from 10 days to four months to turn positive — and most labs don't hold samples that long to report results. This can lead to many false negatives.

Also, symptoms vary widely — a patient in the early stages might develop a rash, fever, headaches, and fatigue, while those left untreated might experience heart problems, numbness, cognitive impairment, joint swelling, and muscle weakness. Lyme is called the "Great Imitator" because its symptoms appear to mimic other illnesses.

To further complicate matters, doctors themselves don't even agree on how to treat Lyme. The conventional establishment, led by the Infectious Disease Society of America, does not recognize the existence of chronic Lyme and says that a short course of antibiotics (the standard treatment) is enough to eradicate the disease no matter when a patient was first infected.

Then there are doctors like Sciabbarrasi, a member of the International Lyme and Associated Diseases Society, who point to a growing volume of medical literature showing that active Lyme infections may persist for months or years eluding conventional lab testing, and so may require a much more aggressive approach to treatment.

Dr. Sciabbarrasi described this controversy "like a war." Case in point: He once presented positive blood cultures of a patient with chronic Lyme to conventional doctors at a major teaching institution. But the cultures "were disregarded as though they didn't exist," he said. "It was stunning to me."

Treatment

In the stressful weeks following her diagnosis, while Ankers was trying to make sense of her treatment options, her health spiraled out of control. Over a two-week period this April, she suffered six grand mal seizures, developed memory and speech difficulties, started losing her hair, and became incredibly sensitive to light and sound.

A neurologist put her on a successful anti-seizure medication, but she continues to face the major challenge of eliminating her underlying infection. She's had "mild success" with an alternative approach called ultraviolet blood irradiation, in which some of her blood is removed once a week, run through an ultraviolet machine that theoretically kills bacteria, and then is reintroduced into her body.

But her days fluctuate. On good days, she can get out of bed, make a meal, run an errand. On bad days, she stays in bed wearing a blindfold and earplugs. Very soon, she plans to begin a highly aggressive course of IV antibiotics that will last anywhere from six months to three years.

"I'm excited to start, but I'm also kind of afraid of what I'm in for," she says. "When you aggressively treat Lyme, you can sometimes get worse."

Doctors who deliver this kind of treatment can also face punishment from their state medical boards for ignoring the standard guidelines, which state that there are no grounds for extended antibiotic use in Lyme patients. And because chronic Lyme is not recognized as a conventional diagnosis, Ankers's insurance refuses to pay for her treatment. She's spent a whopping $10,000 on medical bills in the last two months alone, and is raising money to help pay for it.

But she has reason to be hopeful. Dr. Sciabbarrasi notes that most chronic Lyme patients show moderate to dramatic improvement with the proper treatment.

So ultimately, can Ankers expect to resume a normal life one day?

After along pause, she takes a deep breath.

"I don't know how to answer that," she says. "I really hope so."

UPDATE: Shortly after this interview, on June 19, 2014, Ankers fell into a coma for two weeks due to complications from her Lyme disease. As of July 7, she is awake and recovering in the ICU.

Kira Peikoff is the author of No Time to Die, a thriller about a girl who mysteriously stops aging. It is available now for pre-order, and will be published on Sept. 2, 2014. Connect with her on Facebook or tweet her @KiraPeikoff.

If you've endured a medical mystery and want to share your story, email Kira at cosmomysterydiagnosis@gmail.com.

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