This article was first published in Trial Site News, which is generously allowing publication in Lymedisease.org.

by Mary Beth Pfeiffer

A lawsuit has been settled in the death of a 17-year-old boy whose heart failed after doctors, relying on a faulty test, did not treat him for Lyme disease. Terms of the settlement, which under New York law is likely modest, are sealed.

“I can tell you that we resolved the case,” said Michael Ronemus, attorney for Joseph Elone’s parents, Ben and Diane Elone of Poughkeepsie, N.Y. “There are confidentiality provisions that prevent us from disclosing anything else.”

The settlement came just days before a trial was to begin on the merits of the wrongful death lawsuit, which took almost eight years and involved 471 court filings. The suit alleged that four doctors and the pediatric practice and hospital they represented failed to properly treat Joseph for Lyme disease and the cardiac complication that killed him on Aug. 5, 2013.

In an emailed statement, Joseph’s parents wrote: “When our son died from Lyme carditis at the age of 17, we wanted to bring awareness to Lyme Disease in the hopes that it would prevent another death. The end of this case will never bring back our son, but we are hopeful it will impact the next patient. We plan on continuing to help bring awareness to Lyme disease.”

‘Didn’t have Lyme’

Joseph’s case was seen in the large community of Lyme disease advocates and struggling patients as symptomatic of a treatment paradigm riddled with dangerous pitfalls. Chiefly, the standard Lyme test that was used to incorrectly rule out his Lyme disease is wildly inaccurate early on, generating falsely negative results at a rate 60 times higher than HIV tests.

And though its flaws are well-documented, the test was trusted. In a deposition for the case, a pediatrician was asked to state the “significance to you as a treating doctor of the fact that [Joseph’s] antibody test was negative for Lyme?”

She answered: “That he didn’t have Lyme at that time.”

The U.S. Centers for Disease Control, which has long endorsed the test despite its shortcomings, warns: “Antibodies can take several weeks to develop, so patients may test negative if infected only recently.” Doctors are hence given leeway to diagnose clinically, meaning based on circumstances and symptoms.

Joseph Elone is shown during a hike with an environmental education group around 2012. He died on August 5, 2013 of Lyme carditis at age 17.

They could have done so for Joseph, who had potential tick exposure and symptoms that aligned with Lyme disease in the days before he collapsed on his front lawn. He died hours later.

Joseph had just spent two weeks at a summer camp in Rhode Island, a state with the nation’s seventh-highest Lyme disease rate. He also lived in a Hudson Valley county with among the highest Lyme disease rates in the country. Most importantly, he had flu-like symptoms—fatigue, fever, cough and achiness—in non-flu season.

Yet he was not treated with a standard course of usually curative antibiotics. Many chronically ill Lyme patients report similar experiences early in the infection, when they say doctors relied on a falsely negative test or diagnosed them with something else. As with Joseph, many did not have a visible red rash associated with the disease; nor had they seen the tick that bit them.

Medical dogma

Such misdiagnoses are rooted in medical dogma that pervades Lyme disease. Guidelines of the Infectious Diseases Society of America have long warned doctors not to treat patients for Lyme disease without a rash or a positive Lyme test. Symptoms “are too nonspecific to warrant a purely clinical diagnosis,” according to 2006 guidelines in effect when Joseph died.

Newer 2020 guidelines still express strong confidence that infected patients will be “invariably positive” on standard tests but note that results “may not be available” early in the infection.

Such language, coupled with IDSA assertions that the disease is easy to diagnose and treat, has sown confusion and abetted misdiagnosis. As it is, 10 to 20 percent of people who actually receive early treatment remain ill a year after Lyme infection, likely because of undertreatment and the role of other tick-borne infections. Meanwhile, an alternative set of rigorous guidelines, by the International Lyme and Associated Diseases Society, is all but ignored by mainstream practitioners.

Just five months after Joseph’s death, a 38-year-old father of three collapsed and died in the same small upstate county, one more example of the hidden toll of Lyme disease. The man’s Lyme carditis was discovered only after his death, when his tissues were tested as an organ donor.

Limits of the law

Lyme advocates with whom I spoke mostly understood why Joseph’s family chose to end this prolonged and painful chapter in their lives. But there was disappointment that the lawsuit settled. It was hoped that a jury’s wrongful death finding would send a clear message to the medical establishment.

The case could have been “a teachable moment” for doctors to use “clinical judgment and index of suspicion” in treating Lyme disease, said one physician who specializes in the diagnosis and treatment of Lyme disease and asked not to be named. Instead, doctors remain in “ignorant bliss and go out of their way to avoid attending conferences on Lyme disease. That is the unfortunate consequence of a confidential settlement,” the doctor said.

A similar lawsuit in Maine recently resulted in a $6.5 million jury award to the family of a man, 25, who died in 2017 of undiagnosed Lyme carditis after being told his Lyme rash was a skin infection.

From the start, the deck was stacked against a significant award in Joseph’s death. Under New York state law, wrongful death judgments are calculated according to the decedent’s income. As a minor, Joseph had no family relying on his paycheck, though he had huge potential as a budding nature scientist entering his senior year of high school and planning on college.

A bill called the Grieving Families Act would have changed the way lives were valued in wrongful death cases, expanding the criteria for awards from “not just for economic damages…but also for grief, sympathy, and loss of consortium,” according to a legal alert posted by the law firm Lewis Brisbois.

Despite overwhelming support in the state Legislature, the bill was vetoed last January by Gov. Kathy Hochul. She faced strong opposition from hospitals, health-care providers and insurance companies, which clearly influenced her decision.

The law as proposed would have been applied retroactively to cover pending cases, including Joseph’s.  

David v. Goliath

Beyond the limits of the law, the deep pockets of hospitals, medical groups and insured doctors undoubtedly reduce the odds of success in Lyme disease litigation.

Ronemus, the Elone’s attorney, was waging a legal battle with at least four other well-heeled law firms, all while working for eight years on contingency. At one point, he told me before the settlement, an expert witness with whom he had worked for months suffered a stroke, costing many thousands of dollars and forcing a search for a new expert. Yet he does not regret taking on the case.

“I feel honored to have represented the Elones,” he told me. “I’m glad the public learned about Lyme disease. If this helps save one life, it’s worth it.”

The Lyme doctor I interviewed asked the obvious question: “I wonder if there is any sense of remorse by the practitioners who totally missed the boat and those who mishandled the case.”

Lessons learned?

Undoubtedly, lessons were learned. Joseph’s case was published in a medical journal, where photos showed the Lyme spirochete, called Borrelia burgdorferi, in his heart tissue. A play called “The Little Things,” written and produced by Mary Stuart Masterson and Jeremy Davidson, told his tragic story.

Nonetheless, some 476,000 people contract Lyme disease in the United States yearly, a figure that has steadily grown. When I recently went for a Lyme disease test, I asked a nurse practitioner for an alternative to doxycycline, which has been shown to have limited effectiveness.

“It’s not in the guidelines,” I was told.  “There’s another set of guidelines,” I replied.

“Doctors need to know that, like Joseph, many Lyme disease patients don’t develop a rash and many don’t test positive,” Lorraine Johnson, CEO of Lymedisease.org, wrote when I asked her response to the settlement.

“His tragic death would have been avoided if his doctors would have recognized his recent exposure to ticks at camp, flu-like symptoms, and fatigue as red flags. Tragically, they didn’t and Joseph’s life ended at the age of 17.”

Investigative reporter Mary Beth Pfeiffer is the author of Lyme: The First Epidemic of Climate Change.