Many patients with Lyme disease feel their symptoms aren't taken seriously by mainstream medical providers, leading to a flourishing market of unregulated and unproven treatments that can be dangerous—and even fatal, Lindsay Gellman reports for Bloomberg Businessweek.

The right route to avoid pitfalls of chronic disease management

Some patients have Lyme disease symptoms for years

According to CDC, about 30,000 cases of Lyme disease are reported each year to the agency, but CDC believes that there likely are about 300,000 new cases of Lyme disease each year. In North America, the disease is most often caused by an infection from Borrelia burgdorferi bacteria in the species, and it's usually transmitted through tick bites.

Symptoms of Lyme disease typically include headache, fatigue, fever, and a bull's-eye-shaped rash at onset. If the infection goes untreated, it can spread to patients' heart, joints, and nervous system, Gellman reports. However, the disease can be treated with a course of antibiotics that typically lasts from two to four weeks. Most patients recover fully and quickly with treatment, according to Gellman.

But CDC recognizes that's not always the case, and some patients with Lyme disease can face symptoms for months to years after treatment. CDC refers to such cases as post-treatment Lyme disease syndrome: a condition that, according to CDC, has no proven treatments and likely is not the result of an active infection, Gellman reports.

Because the condition has no treatment, patients with the syndrome—or "chronic Lyme disease," as some patients call it—often are left searching for solutions to help alleviate their symptoms, and they sometimes feel as if their doctors aren't taking them seriously, Gellman reports.

The rise of LLMDs

That environment has created an opportunity for so-called "Lyme-literate medical doctors" (LLMDs) to emerge and flourish, according to Gellman. Health officials and industry watchers estimate there are more than 500 practicing LLMDs, Gellman reports.

But some officials, patients, and family members allege that some LLMDs often misdiagnose patients with chronic Lyme disease instead of other, treatable conditions—misdiagnoses which, in some instances, can injure or even kill patients, Gellman reports. Further, they allege that some LLMDs offer alternative and scientifically unproven treatments, including ozone therapy, long-term antibiotics, vitamin supplements, and others, she notes.

In 2017, CDC published a collection of case reports detailing instances in which practitioners' alternative Lyme disease treatments resulted in patients being hospitalized. Gellman reports that the cases followed a pattern in which a patient sought out care from an LLMD who prescribed IV treatments through a catheter that eventually became infected.

For example, Dejay Cartwright, who had been experiencing Lyme disease symptoms since 2003, in 2015 visited LLMD Henry Childers at his clinic, Delaware Integrative Medicine. Childers wanted to provide Cartwright with infusion procedures, so he sent Cartwright to Christiana Hospital to have a port surgically inserted into her chest, Gellman reports.

That September, Childers sent Cartwright back to Christiana to have the port replaced, as it had become clogged. Cartwright received a new port but, over the next few days, the skin around the device became hot and inflamed. And when Cartwright returned to Childers' practice a few days later, she said she was experiencing flulike symptoms, Gellman reports, but staff at the clinic continued with Cartwright's treatment. According to Gellman, Childers has said there was no inflammation around Cartwright's port while she was at the clinic.

The next day, Cartwright collapsed in her bathroom. But after recovering, Cartwright continued receiving infusions at the clinic. Then, on Oct. 1, 2015, Cartwright was found lying on the floor by her daughter, Tiffany, who called emergency services. Cartwright was taken to Christiana's ED, where doctors learned that Cartwright had developed MRSA, and that the infection was too far along for any treatment. After a few days of life support, Cartwright died.

In another instance, after Anna Burgess had been diagnosed with POTS—an autonomic nervous system disorder—her parents took her to see Marvin "Rick" Sponaugle, an LLMD who operates the Sponaugle Wellness Institute, Gellman reports. According to Gellman, Sponaugle, an anesthesiologist by training, had marketed himself as a Lyme disease expert since he and his wife together developed "an Integrative Treatment for Lyme Disease" while treating his own daughter's Lyme disease—a treatment Sponaugle said saved his daughter's life.

When Burgess first came to see Sponaugle, he diagnosed her with a number of conditions, including Lyme disease (for which Burgess had previously tested negative). Sponaugle constructed and enrolled Burgess in a 12-week treatment program, and he had Burgess fitted for a catheter so that staff at his clinic could provide Burgess with antibiotics and other compounds delivered directly into her arm.

A few weeks later, Burgess developed several new symptoms, including a stomachache, a burning sensation in her head, tremors, and coughing up a dark fluid, Gellman reports. Sponaugle said Burgess was experiencing a "biofilm burst" as toxins were leaving her body because of the treatment, and he continued giving Burgess an increasing amount of antibiotics, as well as sedatives.

Burgess' condition continued to worsen. On Nov. 29, 2016, emergency medical services took Burgess to a hospital, where providers discovered she had pancreatitis, according to Gellman.

Gellman reports that Sponaugle then arrived at the hospital with a nurse and, according to court documents, he instructed the nurse to turn the hospital's security cameras away from Burgess so he could place eight vials of an antioxidant into her IV. Burgess died at the hospital the following day, according to Gellman.

'Desperation doesn't make for a rational choice'

According to Gellman, legal and regulatory attempts to crack down on LLMDs with histories of unsafe practices largely have been unsuccessful. For instance, Gellman cites two instances in which LLMDs in New York faced charges of incompetence and negligence, and they ultimately signed consent orders giving them three years of probation. Both LLMDs still practice, Gellman reports.

And while some LLMDs have faced lawsuits, the cases typically are settled with details kept quiet, Gellman reports.

Gellman notes that Tiffany Cartwright sued Childers for negligence in her mother's case. Through that lawsuit, Tiffany learned that Beebe Medical Center in 2012 had suspended Childers' privileges—and that the state attorney general's office had filed for an emergency suspension of Childers' license "due to the clear and immediate danger he poses to the public health," Gellman reports.

According to Childers, the complaint didn't cause any disciplinary action from the state board, and the complaint ultimately was dismissed. He claimed that his former co-workers at Beebe held animosity toward him and had pushed for the complaint and his ouster.

Ultimately, Cartwright and Childers agreed to settle Cartwright's lawsuit, Gellman reports.

But despite reports of a number of cases like Cartwright's and Burgess', some policymakers and advocates have called for legislation to protect LLMDs from certain malpractice lawsuits and have been involved in pushing for practices that conflict with CDC guidelines on Lyme disease, Gellman reports.

"We have this notion that if you're desperate, you're your own judge of what risks you want to take," Arthur Caplan, head of the Division of Medical Ethics at NYU Grossman School of Medicine told Gellman. "But you can be so easily exploited. And desperation doesn't make for a rational choice," Caplan said (Gellman, Bloomberg Businessweek, 10/7).