Carl Tuttle’s Letter to the editor: Cardiology Patient Page Lyme Disease and the Heart

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Carl Tuttle’s Letter to the editor: Cardiology Patient PageLyme Disease and the Heart1. Peter J. Krause, MD; 2. Linda K. Bockenstedt, MD http://circ.ahajournals.org/content/127/7/e451.full

Krause and Bockenstedt have written a manuscript containing misleading information that could lead to delayed diagnosis and treatment and ultimately disability.

Misleading statement# 1 “The most common clinical manifestation is an expanding red rash called erythema migrans that occurs in ≈90% of cases.” The Lyme patient community here in New Hampshire has never seen a 90% rate in erythema migrans and we now have the second highest incidence of Lyme (1) in the country.

The incidence of bulls-eye rash is well under 50% and more likely closer to 30%. We have primary care physicians here who are telling patients, “You don’t have the bull’s eye rash so you don’t have Lyme disease.”

The state of Maine is reporting an average of a 48.25% incidence of rash-related Lyme over the last 4 years (2) (See page 3 of each document) I would like to point out that the lead author of the first study Dr. Gensheimer served as an Epidemic Intelligence Service Officer with the national Centers for Disease Control and Prevention prior to her assuming her current position in Maine.

Misleading statement# 2“Because of the use of antibiotic therapy early in infection, Lyme carditis is now considered an uncommon manifestation of Lyme disease in adults and a rare manifestation in children.” As reported at patient support groups the vast majority of Lyme patients miss the narrow window of opportunity for successful short term treatment because that bull’s eye rash never developed allowing the disease to progress to late stage. Heart problems in late stage are quite common as it was in my case.

Misleading statement# 3“One dose of doxycycline (200 mg) given within 72 hours after tick attachment can prevent Lyme disease in ≈90% of cases.” Dr Elizabeth L. Maloney found that 50% of her patients went on to develop Lyme disease when prescribing the single dose Doxycycline and has written a challenge to this recommendation. (3) These results are no better than a coin toss.

Misleading statement# 4“Because the Lyme disease bacteria is transmitted only after a tick is attached for at least 36 hours, and only a small minority (3%–4%) of people who remove a deer tick develop Lyme disease, antibiotic prophylaxis is only recommended for people who remove ticks that are attached for at least 36 hours.” At Children’s Hospital of Pittsburgh: (4) “Dr. Andrew Nowalk reports infectious diseases doctors at Children’s Hospital are now recommending antibiotics right away for people bitten by a deer tick. We do see a number of cases that are delayed in diagnosis because the initial rash is missed or the symptoms are misinterpreted. For that reason, infectious diseases doctors at Children’s Hospital are recommending antibiotics right away for people bitten by a deer tick.” Per the following study Lyme disease was transmitted from a tick bite in less than 24 hours: Clinical evidence for rapid transmission of Lyme disease following a tick bite. November 20, 2011. (5)

The Krause and Bockenstedt manuscript content offers a view of LB carditis which was completely described and published in the 1980’s so there is nothing new here. Willy Burgdorfer often expresses dismay that in the 30 years since his discovery, the descriptions of LB have not included new substantial advances in clinical understanding of the full spectrum of illnesses. Krause and Bockenstedt have written a “stuck in time” manuscript and the reader has not been well served by its publication.

(1) NH has the second highest incidence of Lyme

http://www.necn.com/05/14/12/NH-ranks-2nd-for-most-Lyme-Disease-cases/landing_health.html?blockID=707402

(2) Maine incidence of rash-related Lyme 2009-59% (See years 2010-43%, 2011-42%, 20012-49%)

http://www.maine.gov/dhhs/reports/lymereport.pdf

(3) Dr Elizabeth L. Maloney challenge to single dose doxycycline

http://www.ilads.org/lyme_disease/written_testimony/5%20Maloney-Prophylaxis.pdf

(4) Children’s Hospital of Pittsburgh

http://pittsburgh.cbslocal.com/2012/09/25/doctors-change-treatment-recommendations-for-lyme-disease/

(5) Clinical evidence for rapid transmission of Lyme disease

http://dx.doi.org/10.1016/j.diagmicrobio.2011.10.003

The New England Journal of Medicine sent the following email in response to submitting an online transcript (letter to the editor) for the recent NEJM titled:

Differentiation of Reinfection from Relapse in Recurrent Lyme Disease

http://www.nejm.org/doi/full/10.1056/NEJMoa1114362

I was pleasantly surprised to hear they forwarded my letter to Nadelman.