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Are Lyme Disease Deaths Unreported?

lyme disease death by countyDeaths reported as due to Multiple Sclerosis, dementia, and amyotrophic lateral sclerosis may be due to Lyme disease in some cases and, perhaps, could have been prevented had diagnosis been improved. The problems of Lyme disease diagnosis, given the inaccuracy of some Lyme disease tests, makes it difficult for doctors to apply antibiotic treatment in the face of seronegativity and a raft of non-specific symptoms such as occur in Lyme disease. The CDC themselves say that this report on fatalities from Lyme disease is not intended to be ‘dismissive’ and that physicians are encouraged to provide details of patients’ deaths that may be considered due to Lyme disease.

It may be, in a rare few cases, that doctors are reluctant however to list Lyme disease as a possible cause of death where treatment has been denied a patient due to a lack of clinical evidence of the disease. Finding bacterial infection during an autopsy may allow the condition to be considered a contributing factor but the issue of malpractice may be raised by family in such a situation. The total number of deaths worldwide from Lyme disease were thought to number less than two dozen, according to Barbour (1996), but the increased number of reported cases of Lyme disease is likely to have increased that figure significantly in the intervening 15 year period.

Indirect Deaths from Lyme Disease

The probability of dying from inappropriate use of long-term antibiotics, or experimental treatments for Lyme disease is considered much higher than the likelihood of dying from undiagnosed Lyme disease itself. Cases exist of patients developing infections of IV lines that have been left in place for more than two years (with at least one death attributed to such a cause), or suffering complications from controversial malariotherapy for Lyme disease. In one case a Kansas doctor treating a patient for Lyme disease administered fatal injections of bismacine to a patient. The doctor, John R. Toth, M.D., was stripped of his licence and given a forty-month prison sentence for manslaughter.

It may be that other deaths have occurred involving Lyme disease quackery, such as inappropriate ‘treatment’ with unproven therapies involving dietary supplements, hyperbaric oxygen therapy, malariotherapy, rife machines, stem cell treatments, or hydrogen peroxide injections. Lyme disease death may not be a direct consequence of the illness itself, but may occur in vulnerable patients following dangerous treatment by unscrupulous doctors.

Lyme Disease Death – A Case Report

The case of one patient who died from undiagnosed neuroborreliosis in Sweden presents a possible scenario by which the condition could be mistaken for another. This patients case was presented by Buchwald (et al, 2010) and concerned a 25yr-old man who presented with acute hemiparesis (weakness of one side of the body). Although Lyme disease was considered initially due to the man reporting a tick bite in previous weeks, the absence of erythema migrans, or any other Lyme disease symptoms prevented further investigation into this as a possible cause of the hemiparesis. An MRI scan was carried out and the patient found to have a degree of inflammation in the brain, with a small subcortical infarction. He was given aspirin and dipyridamole and, after improving over the following week, was discharged.

The patient then experienced dysphasia (inability to communicate) and paresis (weakness) of his left leg five weeks after being discharged but only sought help three weeks later. Further tests revealed significant degeneration in blood flow in the brain, with several major arteries affected, and the patient was now given an ELISA test for Lyme disease antibodies, along with a PCR test of the cerebrospinal fluid. Blood tests proved positive for Lyme disease ant the patient was given doxycycline and methylprednisone, followed by oral prednisone and doxycycline but he continued to deteriorate and died three weeks later. The cause of death was severe intracranial pressure due to brain oedema, and transtentorial and subfalcine herniation (where parts of the brain shift in the skull).

Such cases are likely to be few and far between, and the authors of this case report stress that it is the only one in the medical literature (to date) where a patient died after presenting with just an isolated symptom of Lyme disease. However, where patients showing symptoms of Lyme disease die form existing problems with cerebral vascularity (following a stroke for example) it may be worth considering Lyme disease to be a contributing factor to that death. In publishing a report stating that deaths from Lyme disease are rare, the CDC clearly does not intend physicians to consider it an innocuous illness with no likelihood of fatality or long-term consequence, but it is clear that further elucidation of Lyme disease involvement in deaths listed as being due to other causes may be warranted, particularly in cases of ‘cryptogenic’ stroke and cerebral vasculitis occurring in Lyme-endemic areas. Lyme disease death may, therefore, be considered insidious and unrecognized to some extent.


Barbour AG. Lyme Disease: The Cause, the Cure, the Controversy. Baltimore: Johns Hopkins University Press, 1996.

Buchwald F, Abul-Kasim K, Tham J, Hansen BU. Fatal course of cerebral vasculitis induced by neuroborreliosis. Neurol India 2010;58:139-41

Kugeler KJ, Griffith KS, Gould LH, Kochanek K, Delorey MJ, Biggerstaff BJ, et al. A review of death certificates listing lyme disease as a cause of death in the United States. Clin Infect Dis. Feb 2011;52(3):364-7.