“Chronic Lyme” has become something of a cult that has hijacked real diseases to seem legitimate. Yes, Lyme disease is an inflammatory infection of real concern, but it is curable.
Fortunately, “chronic Lyme disease” does not exist, and deaths associated with real Lyme disease are extremely rare.
Misinformation about chronic Lyme disease on the Internet and in popular media has led to publicity and anxiety about Lyme disease that is out of proportion to the actual morbidity that it causes.
Furthermore, it cannot be emphasized enough that the vast majority of people with a “chronic Lyme” diagnosis never had Lyme disease in the first place. A good illustration of this point is the thousands of people who think they have chronic Lyme disease in Australia, where there is no endemic Lyme disease.
Sadly, people with diagnoses like cancer, MS, ALS, and Alzheimer’s have been falsely diagnosed with chronic Lyme. Sometimes their deaths are wrongly blamed on Lyme disease.
As discussed below, LymeScience reviewed all 12 detailed reports of patient deaths from probable Lyme carditis published between 1985 and 2019. All cases involved sudden cardiac deaths in those who had not been treated for Lyme disease.
Lyme Carditis: A rare but serious complication of Lyme disease
Lyme carditis is a serious heart problem that occurs in about 1% of reported Lyme disease cases, according to the CDC. Lyme carditis involves “heart block”, which is when electrical signals traveling between parts of the heart are partially or completely blocked.
Heart block can cause the heart to beat in a dangerously irregular manner. When Lyme disease is untreated, the chance of manifesting Lyme carditis increases. Thus, health professionals emphasize the importance of both prevention and being treated as soon as possible.
According to a review by Dr. Linden Hu:
Cardiac involvement occurs during the early disseminated phase of the disease, usually within weeks to a few months after the onset of infection.
Fortunately, Lyme carditis typically resolves quickly with antibiotic treatment. The prognosis is excellent.
More information: CDC: What you need to know about Lyme carditis
Lyme Carditis demographics
Lyme carditis disproportionately affects patients who are male and between the ages of 20 and 40. According to a CDC review of reported cases from between 2008 and 2015, though 57% of Lyme cases were male, 70% of the Lyme carditis cases were male.
While 1.6% of total Lyme cases were from black Americans, a disproportionate 2.3% (n=27) of Lyme carditis cases with demographic information were from black Americans. Given that 27 is a relatively small number, it is unclear if the difference between 1.6% and 2.3% is statistically significant.
Children are less than half as likely to develop Lyme carditis as the average Lyme patient.
CDC investigates deaths associated with (but not necessarily caused by) Lyme disease
LymeScience reviewed all 12 detailed reports of patient deaths from probable Lyme carditis published between 1985 and 2019.
Of the 12 reports, at least two patients had preexisting heart conditions. A 1985 case involving a 66 year old was complicated by a Babesia microti coinfection.
All 12 cases consisted of sudden cardiac death of individuals who had not been treated for Lyme disease. Of the 12 deaths, 10 were male, and ages ranged from 17 to 66.
All 12 cases tested positive according to established antibody testing criteria at their respective publication times.
CDC scientists also attempted to determine frequency of Lyme carditis-associated death.
Among 121,894 cases reported during 1995–2013 (120,198 cases with any form of Lyme disease and 1,696 cases with carditis specified), 702 (0.6%) died from all causes within a year of Lyme disease diagnosis. The observed all-cause mortality for these 121,894 patients is below the predicted age-adjusted, all-cause mortality for this population based on national, age-adjusted death rates. Two of these deaths (0.002% of the total) were classified as suspected cases of Lyme carditis–associated mortality after review of available clinical information.
Both of the two suspected cases of Lyme carditis–associated mortality had positive tests for Lyme antibodies.
Review of death certificates
In 2011, CDC scientists released “A Review of Death Certificates Listing Lyme Disease as a Cause of Death in the United States.” The scientists looked at death records from 1999 to 2003 in 45 states that listed Lyme disease as at least part of the cause of death.
There were 96,068 cases of Lyme disease reported to the CDC from 1999 to 2003. However, only 23 death records had Lyme disease coded as an underlying cause of death. 91 other records listed Lyme disease as potentially contributing to the fatal outcome.
There was evidence that the 114 records were part of an overreporting of deaths attributed to Lyme disease:
- “Only 1 record was consistent with clinical manifestations of Lyme disease.”
- In the group of 91 records listing Lyme disease as a contributing factor, the underlying causes of death “varied widely and also were inconsistent with the well-characterized complications of Lyme disease.”
- 11 of the 23 death records weren’t properly completed and had “an implausible or ill-defined causal sequence of events”
- Few of the remaining 12 of 23 death records that were properly completed demonstrated that Lyme disease was a plausible cause of death.
- The scientists found “9 certificates (8%) had uncertain terms listed such as ‘Lyme disease?,’ ‘Lyme disease—past history,’ or ‘possible chronic Lyme disease.'”
The CDC scientists concluded that Lyme disease is a rare cause of death.
- CDC: Lyme carditis
- CDC: Notes from the Field: Update on Lyme Carditis, Groups at High Risk, and Frequency of Associated Sudden Cardiac Death — United States
- CDC: A Review of Death Certificates Listing Lyme Disease as a Cause of Death in the United States
- Fish AE, et al. Lyme Carditis. Infectious Disease Clinics of North America. 2008; 22(2):275-288.
Citations for 12 detailed reports of carditis deaths
- CDC. Three sudden cardiac deaths associated with Lyme carditis – United States, November 2012-July 2013. MMWR Morb Mortal Wkly Rep. 2013;62(49):993-6. [3 carditis deaths discussed]
- Muehlenbachs A, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016;186(5):1195-205. [2 additional carditis deaths discussed]
- Scheffold N, et al. Lyme carditis–diagnosis, treatment and prognosis. Dtsch Arztebl Int. 2015;112(12):202-8. [European perspective, 4 additional cardiac deaths discussed]
- Yoon EC, et al. Lyme disease: a case report of a 17-year-old male with fatal Lyme carditis. Cardiovasc Pathol. 2015;24(5):317-21. [1 case discussed]
- Marx GE, et al. Fatal Lyme Carditis in New England: Two Case Reports. Ann Intern Med. 2019. [2 cases discussed]