Three young adults in the Northeast who abruptly died in the past 13 months had an undetected heart inflammation caused by Lyme disease, according to a federal study that suggests death from the tick-borne bacteria is more common than previously thought.
The November 2012 death of a Massachusetts man after his car abruptly veered off the road prompted the study, when a tissue bank doctor noticed odd patterns on the man’s heart. He and the other two patients, from New York and Connecticut, were between the ages of 26 and 38, researchers reported Thursday. None was known to have Lyme disease before dying.
Only four deaths have been previously attributed in published medical reports to heart inflammation caused by Lyme, but the disease is a growing problem in the United States, particularly in the Northeast.
While officials at the US Centers for Disease Control and Prevention say they are troubled by the cases and are continuing the investigation, their research shows deaths from Lyme are still exceedingly rare.
“This is not a new phenomenon,” said Dr. Joseph D. Forrester, a CDC scientist and one of the authors of the paper published Thursday in the Morbidity and Mortality Weekly Report. “However, given the severity of what happened and the tragedy of three young people to die suddenly, it was very important to investigate these cases.”
The CDC is urging anyone in New England and other areas with a high incidence of Lyme disease to see a doctor immediately if they experience heart palpitations, chest pain, light-headedness, fainting, or shortness of breath in addition to more commonly recognized Lyme symptoms of fever, rash, and body aches.
There are an estimated 300,000 cases of Lyme each year in the United States, most in the Northeast. Only about 1 percent of Lyme patients are believed to have severe heart inflammation, known as carditis, which is treatable with appropriate antibiotics and, in rare cases, a pacemaker. But the fact that otherwise healthy people with no significant symptoms could suddenly die from undiagnosed Lyme adds to public health officials’ growing worries about the disease that was discovered 40 years ago in Connecticut.
“The discovery ... made all of us nervous,’’ said Catherine M. Brown, Massachusetts public health veterinarian and one of the authors of the report. She said it underscores the need to prevent Lyme disease in the first place and to identify it early so that patients get appropriate antibiotic treatment.
The deaths occurred between November 2012 and last July, and health officials did not identify the victims. The investigation began after the Massachusetts man was found unresponsive in a car after it went off the road. There was no sign of trauma and he was pronounced dead at a nearby hospital. He was an organ donor, so his heart was recovered by the New England Organ Bank and sent to Cryolife, Inc., in Georgia, a tissue processing and medical device company that provides heart valves and patches for cardiac surgery.
During a pathology examination of the man’s heart, a Cryolife doctor, Thadeus Schulz, noticed an unusual pattern of inflammation around blood vessels in the heart that was similar to features he had seen in biopsies from people with Lyme disease when he worked in New York, according to Dr. Gregory Ray, medical director of Cryolife.
“We were curious, there was no history of Lyme disease, no characteristic rash,’’ Ray said. The CDC was called and tests revealed that the man had recently been infected with the bacteria that cause Lyme disease. A transplant did not go forward. Later, a relative of the man said he had complained of malaise and muscle and joint pain two weeks before he died. He lived alone with a dog that frequently had ticks, the report said. Officials believe he went into cardiac arrest caused by the inflammation while driving.
Eight months later, Ray was examining another heart as part of the tissue process, this time of a New York resident who had collapsed at home in July 2013. He saw the same type of pattern Schulz had seen and called the CDC. Again, tests came back consistent with an early case of Lyme. The patient, who had a diagnosed heart abnormality that rarely causes death, was reported to be a hiker but had no known tick contact or rash.
CDC officials then began examining unexplained deaths and found a Connecticut resident who had collapsed while visiting New Hampshire in July 2013 and had complained of anxiety and shortness of breath in the 7 to 10 days before death. That person had been prescribed medicine for anxiety the day before death. Tests revealed that person was infected with the Lyme bacteria.
The Connecticut patient’s cornea was transplanted before Lyme was discovered, but the recipient experienced no problems, the CDC said. The New York state residents’ corneas were transplanted into two different people but they did not report signs or symptoms of Lyme and were treated with antibiotics as a precaution.
Stanley Plotkin, emeritus professor of pediatrics at the University of Pennsylvania and a vaccine expert, said the report shows the urgent need for a vaccine against Lyme.
His son, Alec, collapsed in August 2005 while walking his dog in the suburbs of Philadelphia. An alert doctor at the hospital he was brought to realized he had Lyme and successfully treated him with antibiotics and a pacemaker.
“I think it is unconscionable and a discredit to all parties—public health, manufacturers, Lyme activists—that no Lyme vaccine is available to humans while there is one for dogs,” he wrote in an e-mail Thursday.