Lyme disease upends people's lives, but insurance often won't cover the treatment of long-lasting symptoms

• Long-lasting symptoms of Lyme disease, from memory loss to chronic pain, can unravel people's lives.
• Insurance companies often don't cover a controversial treatment that is often the first resort for treating the disease's long-term symptoms.
• One woman described the nightmare array of symptoms Lyme disease brought, and the enormous costs of paying for treatment.

At first, Kirsten Stein, a 52-year-old from Greenbrae, California, thought she just had a bad flu.

But soon, the fever and chills spiraled out of control into Lyme disease, an unpredictable and mysterious illness that would end up swallowing the life she had always known.

Within three months of getting sick, the CrossFitter who could deadlift 220 pounds before she fell ill became so weak that she could barely grip a pencil between her fingers.

She tumbled through waves of symptoms, ranging from an unrelenting pain in her bones to memory loss to chronic fatigue, that forced her to stop running her business as a professional organizer and left her unable to do tasks as simple as running errands or cooking. The memory loss was so bad that she forgot the names of her friends' children and where she was driving to mid-route.

"Looking at people you've known and not remembering their name is really scary," she told Insider. "The pain is indescribable."

When she tested positive for Lyme disease, an illness transmitted by a bite from an infected tick, almost three years later, she was thrilled to finally begin treating the root cause of her suffering. But the burst of hopefulness was rattled by the mounting costs of treatment, which were mostly not covered by insurance.

Over three years, she estimates she paid around $100,000 for antibiotics and other medications, an amount that drained her and her husband's savings account and retirement funds, but that managed to rein in the avalanche of symptoms.

Read more: 5 tips to protect against Lyme disease during peak tick season

Stein's experience isn't rare. Insurance companies often don't cover the cost of treatment for patients with long-term symptoms of Lyme disease because there isn't a scientific consensus on how best to treat them, said Eva Sapi, a Lyme disease expert at the University of New Haven.

This leaves people like Stein forking over huge amounts of money out of pocket for some of the only medications that can give them hope for recovery, but that are also under-researched, potentially dangerous, and opposed by major medical organizations.

The Centers for Disease Control estimates that almost half a million people contract the disease every year, with case numbers continuously rising as a warmer climate creates a more hospitable environment for ticks and changing land use patterns nudge people closer to the insects.

"We are in an almost pandemic condition of Lyme disease," Sapi said.

Though most people's symptoms resolve after a few weeks of treatment, confusion lingers over how to treat people whose symptoms persist past the initial onslaught of antibiotics, which is typically covered by insurance.

In the contentious world of Lyme disease, some believe the bacteria is killed by the initial wave of antibiotics, while others believe that the pathogen can weather continuous assaults by antibiotics and that longer-term treatment is often needed to treat people with long-lasting symptoms, Mary Beth Pfeiffer, a journalist who has covered Lyme disease since 2012, said.

"If you don't have enough data to say two weeks isn't enough to kill the bacteria, insurance companies are not going to pay for it," Sapi said.

There are glimmers of hope for Lyme patients, like the $150 million in federal funding allocated toward expanding research for the disease, promising new research on better diagnostic tests, and organizations like the LymeLight Foundation, which provides grants for patients to receive Lyme disease treatment.

However, in lieu of widespread, affordable medical treatment, many Lyme patients turn to Facebook groups, Instagram, and TikTok for DIY cures, herbal remedies, and alternative medicine in a desperate search for a way to curb their disease. The Lyme disease hashtag has over 109 million views on TikTok, where videos praising gluten-free diets, lymphatic drainage massages, and other holistic treatments for the disease flourish.

Insurance companies often refuse to cover the costs of treatment because the Infectious Diseases Society of America and the CDC are doubtful about the efficacy of antibiotics and wary of the dangers posed by long-term use. Anthem, one of the largest insurers in the country, considers long-term antibiotic treatment for Lyme disease "medically unnecessary," which means that if an Anthem member's Lyme disease symptoms aren't cured with a few weeks of antibiotic pills, their health plan would likely not pay for additional treatment.

It can be difficult to pin down what kind of treatment insurance companies will cover, because much depends on the state the patient lives in and how much work a doctor puts in to get insurance to approve a drug, Lorraine Johnson, the head of LymeDisease.org, a Lyme disease advocacy group, said. But because the best method for treating the disease's long-term effects remains elusive, insurers should rely on clinical judgement of doctors rather than opting not to cover treatment at all, Johnson said.

"This has a profound effect on people's lives and their families," Johnson said. "A number don't seek treatment because barriers to care are too difficult to navigate."

Stein knows this better than most. Once, she pulled up to a pharmacy drive-through to pick up her medication, only to hear that he prescription would cost $3,000 without her insurance company footing the bill.

"Oh my god, what am I supposed to do?" she thought.

She ended up driving away without the prescription.