Illustration by Anuj Shrestha
When Lyme Kills
The extremely rare complication you should know about
This story is part of “Tickpocalypse,” a multi-part special report.
Joseph Elone just felt tired at first, like he wasn’t sleeping well. A 17-year-old high-school student from upstate Poughkeepsie, New York, Joseph was a quiet but popular science whiz and electric-guitar lover who had just finished a summer environmental fellowship at Brown University. He’d spent two weeks studying on campus and hiking in the Rhode Island woods and was still riding high from the experience. It was late July, and life had a carefree feeling to it. “He was really happy that he had this chance to really open himself up,” says Joseph’s brother, Emmanuel. “He knew that as soon as senior year started he was going to apply early to Brown.”
Soon, however, Joseph developed cold symptoms — a cough, a sore throat, head and body aches, digestive problems, and a low-grade fever.
Poughkeepsie is located in New York’s Hudson Valley region, an area known for high rates of Lyme disease. Joseph had seen no signs of a tick, a tick bite, or the bull’s-eye rash that is often the telltale marker of Lyme, but he and his parents decided he should see his pediatrician in any case.
The doctor saw little reason for concern. Joseph likely had the flu, he said. He prescribed the standard regimen — rest, fluids, and the like — and suggested they give it time.
But a few days later, Joseph’s symptoms worsened. He was feeling light-headed and said he was sensitive to bright light. He returned to the same doctor, who ordered blood tests for strep throat, Lyme disease, and another tick-borne illness called anaplasmosis. The results were all negative.
Joseph and his family were aware that the antibodies indicating the presence of Lyme disease can take weeks to show up in tests, but even if Joseph were to develop the disease, they weren’t worried. Joseph was young and otherwise healthy, and Lyme is usually curable in a matter of weeks with antibiotics.
“It just seemed like he had a cold or something, or a little fever, but nothing crazy,” Emmanuel says. “It wasn’t something that you would take seriously in the moment.”
August 4, 2013, was a hot and hazy Sunday in Poughkeepsie. Diane’s 49th birthday was the next day, and the family had planned a barbecue that night. Late in the afternoon, Benedict and Emmanuel were getting the backyard ready while Joseph and Diane drove to the drugstore for cough drops. They had just come back, Diane walking toward the house ahead of Joseph, when she heard her son collapse behind her.
Joseph lay on the lawn, a few steps from the family’s front door, unconscious. Diane began screaming. The others came and started screaming, too — calling to Joseph and hugging him, but he didn’t respond.
EMTs rushed Joseph to a local hospital, where doctors spent several hours working to revive him. His breathing was shallow, his heartbeat erratic. Later that evening, he was transported 50 miles south to Westchester Medical Center. Not long after he arrived, in the early hours of August 5, just three weeks since he had started feeling sick, Joseph was pronounced dead.
It would take at least four months and several incorrect diagnoses to determine the cause of Joseph’s death, but ultimately, examinations revealed the presence of Lyme bacteria in several of his organs, including his heart.
The Elone family, devastated by Joseph’s loss, was shocked all over again. They had never heard of anyone dying from Lyme disease.
According to the Centers for Disease Control and Prevention, the number of confirmed cases of Lyme Disease in the U.S. rose 131% in the two decades leading up to 2017 and 17% from 2016 to 2017 alone. More than 300,000 new cases are now diagnosed annually, and as climate change and other factors trigger a dramatic increase in the tick population, experts expect the disease to become more common still.
If Lyme is detected early, the standard two-week course of antibiotics usually works well, and most people recover quickly. But about 20% of those who contract the disease continue living with its effects for months after treatment. The corresponding diagnosis, Post-Treatment Lyme Disease Syndrome (PTLDS), stands to affect more than two million people in the U.S. by 2020.
There is also a very small subset of Lyme cases in which the disease proves to be fatal. Although such instances are extremely rare, they are uniquely devastating. They may also be underreported — and preventable.
Joseph Elone’s death in 2013 occurred the same year the CDC released a report of three other deaths related to Lyme. The discovery of the four cases, a small but nevertheless unusual number, led to further inquiries that uncovered numerous additional instances in New York state that had previously gone largely unnoticed, leading experts to wonder if Lyme deaths might actually be more common than previously thought. The new focus on Lyme deaths also shined a light on a cause of the fatalities called Lyme carditis, raising questions about doctors’ awareness of that condition, and the screening procedures used to detect it. Advocates say those questions have yet to be resolved.
“One preventable death is one too many.”
Timothy Sellati, a veteran Lyme researcher and the chief scientific officer of the Global Lyme Alliance, which funds research and awareness programs, says the number of deaths associated with Lyme carditis are underreported. His group and others have begun calling for revised methods of diagnosis to detect the condition earlier. While the overall number of deaths from Lyme disease remains small, “One preventable death is one too many,” he says.
Given the absence of swift and reliable testing to detect Lyme disease, confirming its role in any death is a slow process. At first, all experts could say was that something had weakened Joseph Elone’s heart, compromising its function. The cause of death initially recorded was myocarditis (an inflammation of the heart muscle) and meningitis (a bacterial infection). Another tick-borne illness, Powassan encephalitis, was also suspected at one point.
It was only in December when reports surfaced that tests had found Lyme spirochetes, or bacterial residue, in Joseph’s heart tissue. Sure enough, in March 2015, a prominent medical journal confirmed that Joseph’s liver, heart, lung, and brain tissues all contained evidence of Lyme. The official cause of Joseph’s death was Lyme carditis.
Lyme carditis occurs when Lyme disease bacteria invade the tissues of the heart, disrupting electrical signals between the organ’s upper and lower chambers. That, in turn, causes an abnormal heart rhythm and a problem known as “heart block.” Heart block can be mild, but it can also become serious very quickly. Patients typically experience many of the symptoms characteristic of Lyme disease — fatigue, coughing, headaches, and the like — plus cardiovascular or pulmonary symptoms like light-headedness, fainting, shortness of breath, heart palpitations, or chest pain. Like Lyme itself, the condition is generally treatable if detected early. (Depending on the severity of the case, people are given oral or intravenous antibiotics; in some instances, they may need a temporary pacemaker.) But if Lyme carditis is not treated in time, it can be fatal.
Lyme carditis isn’t the only source of Lyme-related deaths. People with underlying health conditions can be overcome by Lyme disease, and suicide is a risk for PTLDS patients who become severely debilitated or depressed. But those risks are relatively well-known.
Lyme carditis, on the other hand, often goes overlooked. The condition is so rare that most people and doctors are barely aware of it, if they’ve even heard of it at all.
After Joseph Elone’s death and the report of the three other Lyme carditis deaths in the same year, officials in Duchess County, New York changed their public health advisory to doctors weighing Lyme as a cause of illness. Now physicians are told to ask about cardiac symptoms in possible Lyme cases and to check cardiac cases for possible exposure to ticks and symptoms of the disease. (Forty-two percent of the pediatric Lyme carditis patients identified in the 2009 CDC study had advanced heart-function problems.)
After his son’s death, Benedict Elone called for increased awareness of Lyme’s fatal potential and for more to be done to prevent Lyme deaths.
“Be it Lyme or be it Powassan — people need to know that it can kill a strong, physical guy,” he told reporters. “There is something in our environment that can kill somebody that fast. We really need to know about it, study it, and find some solutions.”
In front of the TV cameras, he spoke lovingly about his son. “He’s a kid who knew who he was,” Benedict said. “He had all kinds of ambition. Teachers couldn’t stop speaking well of him.”
And then he dissolved into tears, repeating the same phrase again and again. “I just miss my son,” he said. “I just miss my son. I just miss my son. I just miss my son.”
Well, if this isn’t heartbreaking, I don’t know what is.
There are numerous points that should be mentioned:
- The media, researchers, and doctors need to refrain from the word “RARE” on pretty much anything regarding tick-borne illness. Notice out of one side of his mouth, the author states the same year Elone died, the CDC released a report of three other deaths related to Lyme, “which led to further inquiries that uncovered numerous additional instances in New York state…leading experts to wonder if Lyme deaths might actually be more common than previously thought.” Then, out of the other side of his mouth he announces with certainty that it’s rare. This is illogical and undermines the seriousness of this. All I can say is Zika was handled very differently.
- Please take note that spirochetes riddled his body. They were all over. How many dead bodies have to pile up before the CDC/IDSA/NIH believe Lyme is serious and that those with persistent symptoms just might be chronically infected, with spirochetes riddling our bodies? Instead, we have bone-heads saying we have MUS (medically unexplained symptoms), which essentially means he believes we are psychosomatic: https://madisonarealymesupportgroup.com/2019/06/11/dr-eugene-shapiro-medically-unexplained-symptoms/ Video of Shapiro stating he believes our symptoms are completely unrelated to Lyme, i.e. – MUS. He also states the parents weren’t happy with his findings….gee, I wonder why?
- Again, regarding only 20% of patients being in the PTLDS group: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/, microbiologist Holly Ahern states that number is incorrect and only includes those patients diagnosed and treated early. When you add the 10-20% in this category with the 30-40% NOT diagnosed and treated, you get a whopping potential 60% of ALL patients who go on to develop chronic/persistent symptoms. This is HUGE and downplayed. Little to no research exists on this patient group and yet they are in the majority.
- If you want to take a peek at the number of people DYING from Lyme: http://whatislyme.com/rip-lyme-friends-memorial/ Collected by Lyme patient and advocate Lisa Hilton, she’s also made a chart and listing of Lyme deaths: http://whatislyme.com/is-lyme-disease-fatal/, based upon 219 Lyme deaths.
Is that still considered rare?