Fatal Lyme carditis presenting as fluctuating high-grade atrioventricular block

The recent publication on Lyme Disease (LD) raises a number of issues regarding epidemiology in Canada and rekindles the experiences of past from British Columbia.
In the late 1980s, when LD activity flourished in the USA, interest was pioneered in British Columbia and Canada by then Dr. Satyendra Banerjee, his wife Maya, and myself. By 1989 and shortly thereafter, anecdotes of bonafide (screening IFA and confirmatory Western blotting) disease were evident albeit infrequent in this province. Some illnesses included erythema chronicum migrans, carditis, and fever of unknown origin.(1) A considerable proportion were known to have been acquired outside of Canada. In short order, we created in-house immunoblotting and conducted a large serosurvey of asymptomatic blood donors which showed a 5-10% IFA seroreactivity with titers >1/256. Much of the latter was deemed non-specific, but immunoblot reactivity to various Borrelia burgdorferi antigens was observed for some. Given then societal pressures and beliefs that rheumatological diseases in this province might be commonly ascribed to LD, we collaborated with pediatric rheumatologist Dr. Peter Malleson to conduct a serodiagnostic analysis of childhood arthritis. LD could not be confirmed among a diversity of such patients including those with pauciarticular and polyarticular disease.(2) Over three decades since, LD continues to be found endemically in our province but yet infrequent.(3) Infections have been documented from some Interior regions, the Lower Mainland including North Shore, the Fraser Valley, Vancouver Island, and some Gulf Islands.
When Dr. Banerjee retired, his endeavours were taken up by Dr. Muhammed Morshed and collaborators. More recent accounts of B. burgdorferi among ticks and rodents in British Columbia are consistent with the apparent low prevalence of disease.(4) Despite the plethora of work in this field, there is yet one critical issue that has remained. Using immunoblots in the distant past, it was unresolved as to what would prompt immunoreactivity to several Borrelia antigens even if not fully diagnostic. We hypothesized that there could be variants of B. burgdorferi sensu lato that were unknown, cross-reactive serologically, but could not be detected when commonly and commercially available diagnostic kits were using eastern North American B. burgdorferi strains as template antigen. Scott et al. have recently given us cause to rethink this epidemiology by their finding of Borrelia genomospecies 2 in Ixodes spinipalpis on Vancouver Island.(6) We are yet in need of studies which assess serodiagnosis with local isolates of non-hermsii borreliae.

I am glad to see that this case was reported.

Lyme disease is a very serious disease, hard to diagnose, and difficult to treat unless caught very early. That almost never occurs in Canada as confirmed by this published paper. https://tinyurl.com/ybhgtlnb

The requirement for the person to have been in a known endemic area as part of the diagnostic criteria is negligence. Ticks are found anywhere that birds fly as they transport these ticks everywhere, randomly. Likewise, the rash should not be part of the criteria unless it is present. Only a small subset of borrelia bacteria will cause any rash. https://tinyurl.com/ycz96es9 Only 18% of children studied in Nova Scotia with confirmed cases had any rash at all. The rash occurs much less that 50% of the time https://tinyurl.com/ybbfaxtk and of the rashes that do occur, only 9% take the over-imprinted 'bull's eye' form. https://tinyurl.com/y7nu9ac5

Canadian protocol and physician education for diagnosis and treatment is terrible and misleading. Patients and their experts have been trying to tell those who control all aspects of Lyme disease in Canada, the Public Health Agency of Canada (PHAC), and the Association of Medical Microbiology and Infectious Disease of Canada, for over a decade that we need to be at the decision making table but we have been denied, against all recommendations including that of the Canadian Institute of Health Research who acknowledge that true patient engagement is a must at every step of the way. Instead we have a clique of self appointed 'experts' connected to the Infectious Disease Society of America who deny scientific and medical ethic and whom now sit at every major level of policy making in Canada, provincially and federally, including at PHAC. It is officially a closed door policy to patients and their experts. They have monopolized Lyme policy across Canada.

My daughter has a permanent pacemaker from Lyme disease. Her heart needs the pacemaker despite treatment. She has never tested positive using the Canadian tests but tested positive at New York State approved testing, who have the most rigorous certification in the USA. Her initial cardiologist refused to accept the certified test results and in front of my wife and I told her to go home and quit being a stressed out teenage girl. We fired him. Luckily though another family physician she was referred right away to a Canadian arrhythmia specialist who spent an entire morning running tests. He said she would not survive without a pacemaker. Her heart would race up to over 150 beats per minute then suddenly drop to 30 beats per minute where she was barely conscious. But this occurred intermittently as much of the time her heart functioned relatively normally.

The Canadian Lyme Disease Foundation, through the help of a wonderful donor can now offer financial assistance to physicians wishing to take CME accredited courses on Lyme disease, borreliosis in general and coinfections.

The case study presented by Semproni et al. suggests a stronger conclusion. In 2013, after weeks of increasing fatigue and exertion intolerance, I presented at an ER following a brief loss of consciousness. At triage, I was bradycardic at 29bpm and ECG showed third-degree atrioventricular block. I was 39 years old and healthy with no history of cardiac complications.

The treatment team discussed the possibility of Lyme carditis, given the lack of other explanations for third-degree AV block. The decision was made to immediately implant a permanent pacemaker, on the theory that regardless of cause, the need to reestablish reliable pacing was the first priority. I was discharged the following day with doxycycline before serologic confirmation of Lyme.

The Semproni et al. case study is vague as to why transcutaneous, transvenous, or permanent pacing was not established immediately and why the team relied on cardiac monitoring instead. It is true that other authors (Wormser GP, Dattwyler RJ, Shapiro ED, et al.) also suggest that admission to a unit with cardiac telemetry is the first step.

Three months after discharge, I had my permanent pacemaker extracted after repeated ECG confirmation that the AV block was permanently resolved.

Given the potential for rapid and unpredictable progression of Lyme carditis, the Semproni et al. case study suggests that perhaps the standard of care for cases of suspected Lyme carditis should include immediately reestablishing reliable pacing in all cases where third-degree AV block is present, whether intermittent or not.

Treating physicians in all areas where Lyme is endemic should be trained to recognize Lyme carditis where a patient presents with AV block but is too young to have heart disease but too old for first manifestation of a congenital heart abnormality. In these cases, doctors should be warned that reestablishing reliable pacing must be an urgent priority.

The CDC recognized that Lyme could kill outright but gambled that these events would be rare enough that they would not hold the public’s attention for long enough for sustained reaction. Physicians are taught that this is a minor nuisance disease not much different than you would expect to find with any other insect bite [ticks are arachnids] defined by a much over-emphasized rash and flue–like symptoms that was easy to recognize and treat at any stage with a single bacteriostatic agent and that patients would get better on their own even if they received no treatment. Medical authorities continue to focus on only the earliest acute symptoms [the rash] and ignore that left untreated or under-treated, the disease can metamorphose into a multi-staged, multi-systemic disease that are in the same health threat category as Zika, West Nile, Ebola and cancer.

This is a medical system divided against itself. Adherents to the dominant
medical opinion on Lyme and tick-borne diseases [TBD’s] are willing for various ideological reasons to let people perish. The defining characteristic of corruption in modern medicine is the abandonment of the patient’s interest. Patients are often road-kill on the highway to profit for the insurance industry.

The fact is that denying, downplaying and trivializing Lyme has happened from the earliest days when we first became aware of its presence in Canada and when it became endemic in the 1980’s and evidence is being spun to fit an agenda.

Family doctor’s ignorance is frequently mixed with reasonable fear: treating
Lyme patients in Canada, especially advanced cases with persistent Lyme, may
cost a doctor his or her license. The provincial Colleges of Physicians and
Surgeons can enforce this national policy of Lyme denial by investigating
anybody that doesn’t conform to protocols and to the rigid IDSA guidelines even
though the guidelines themselves say they are not mandatory and our courts
have agreed that they are voluntary. It is always of help to have a well-informed patient.

Patients and their health care providers should be given treatment choices when
they are available. The IDSA guidelines have nothing useful to say about the
reality of the disease and the actual experience of those that have it. Canadians have made it very clear that we want a made-in-Canada solution and don’t want to have our medical system controlled by the U.S. Health Insurance industry.

Our public health agencies should attract and encourage people with diverse
opinions on the subject of Lyme and be encouraged to express their views and
explore new areas of research on Lyme and TBD’s. Instead the government gave the $4 million arising from the 2016 Conference to Develop a Federal Framework on Lyme disease to a single group of status quo physicians and researchers, who are using the money to cement old ideas.