Lyme disease and other tick-borne infections are skyrocketing. In western Pennsylvania, where I work, Lyme increased 25% just between 2013 and 2014, with Butler County having 412 cases and Allegheny County chalking up a record 822 cases last year. And where I vacation, in Maine, the rate of Lyme in 2014 was 240 cases per 100,000, which is more than 20 times the national average, and twice the rate of Butler. Across the country, the CDC now estimates there are ~329,000 cases of Lyme disease each year, tenfold higher than previously thought. Vermont and New Hampshire have the highest incidence.
I saw three patients myself while working one week in western Pennsylvania earlier this summer, none with a typical bull’s eye rash, making diagnosis more challenging, as I noted in “Ticked Off – What We Don’t Know About Lyme Disease.”
One puzzling middle-aged patient, “John,” had Lyme carditis (heart infection), and presented with heart block as well as need for a CABG (coronary artery bypass graft surgery). (Heart block is a type of abnormal heart rhythm sometimes associated with Lyme.) I was asked to see John only after surgery, unfortunately, as it would have been interesting to see if we could document Lyme in his heart tissue. His case raised more questions for me, as did what I then read about Lyme-associated heart disease.
For example, Lyme carditis is more often seen in young people, and early in the disease. John recalled a bite 4-5 years ago. Of course, perhaps that earlier bite wasn’t the one that made him ill.
How much heart involvement is there with Lyme? Based on cases submitted to the CDC, only 1.1% of patients had carditis. I suspect the real number is substantially higher, given that I’ve seen several patients with it and based on other reports in the literature, which often cite a 4-10% incidence of carditis.
One disconcerting case series was of three sudden cardiac deaths in young adults (ages 26-38), all of whom were organ donors, and who were found on pathology to have Lyme infections.
While an update reported that pathologists at tissue banks retrospectively reviewed reports for 20,000 specimens, finding no additional cases, no mention is made of how thorough the reviews were, nor whether special stains to detect Borrelia were used. Dr. Paul Mead, of the Division of Vector-Borne Diseases, CDC, thinks it unlikely that cases were missed, as there are characteristic histologic findings with Lyme carditis. Given how infrequently autopsies are done, and how limited or “defective” they are at times, I’ve little doubt that other cases are missed.
I’ve wondered, “Should we be doing Lyme serology on everyone with acute 2nd or 3rd degree heart block or unexplained heart failure?” I’d love to see a pilot study doing heart biopsies on patients getting certain invasive cardiac tests (such as electrophysiologic studies or undergoing open heart surgery in areas with a high incidence of Lyme), though I’m told that organisms are hard to find in tissue biopsies except if the carditis is acute.
A notably disturbing case is that of Dr. Neil Spector, a Duke oncologist. In his autobiographical book, Gone in a Heartbeat, Spector recounts how he developed severe heart failure and required a heart transplant, almost certainly due to undiagnosed and untreated Lyme disease. Why undiagnosed? Because we have extraordinarily poor diagnostic tests, as I noted before, and because the IDSA guidelines require specific Western Blot test abnormalities to declare a case confirmed…and Spector’s blood did not show enough of these abnormalities. So doctors repeatedly dismissed his symptoms as being due to stress. Spector explains, “Heaven help the patient whose diagnostic tests do not point to a specific disease. They are likely to end up neglected by the very system that was designed to help them.” He rightly points out that this often happens to patients with autoimmune diseases like lupus or rheumatoid arthritis, and often especially to women. He expressed dismay that “despite my instincts and research into the field, I was largely being discounted by the medical community. If this can happen to a physician-scientist with extensive knowledge of medicine, just imagine what is happening to others who lack a medical background.”
Throughout his story, Dr. Spector notes what is being lost in modern, technological medicine. It used to be that physicians “would learn best by listening. Listening to what the patient — and their families — were telling us. And by observing.”
So much of what Spector recounted to me resonated, both as a patient who gets things that are not textbook-like nor straightforward, and as a physician. Although he is a researcher and clinician, his book is intensely human and personal. For example, he, like many of us, “was frustrated to be locked into my job simply because I couldn’t afford to jeopardize health care coverage for my family and me.” His best advice to patients, “if the medical professionals won’t listen to us or refuse to believe what we’re telling them? Be tenacious. Stick with your instincts.” I phrase that as “You have to kiss a lot of frogs…before you find the right doctor”
As I read more and speak with experts, I have more questions and actually feel more muddled at times.
Why don’t some people get better after treatment for Lyme? Is it due to “persister” forms of intracellular bacteria, or those hidden in “sanctuaries” within the body, as we’ve just seen with Ebola hiding in the eye and semen?
Is the problem of ongoing symptoms due to a coinfection with other organisms that are hard to detect or not routinely looked for?
Or is the problem due to an abnormal immune response, triggering an autoimmune illness. One example is the development of meat allergies from certain tick bites.
What is more clear is that the tests that we have for diagnosing Lyme are woefully inadequate and are doing our patients a great disservice.
We desperately need more funding for Lyme surveillance and research. I’ll have more on this dismal state in an upcoming post.
Further, we need to have a broader discussion and willingness to look at alternative explanations as to why many patients have ongoing symptoms after treatment for Lyme, and more inclusive membership on panels that make up treatment guidelines.