Tag Archives: Lyme Carditis

Lyme Carditis

From: “Carl Tuttle” <runagain@comcast.net>
To: hboucher@tuftsmedicalcenter.org
Cc: mmelia4@jhmi.edu, ElsevierClinics@elsevier.com, aiim-office@meduniwien.ac.at, usbkinfo@elsevier.com, journalscustomerservice-usa@elsevier.com, Roosen@elsevier.com, “y chi” <y.chi@elsevier.com>, “m seeley” <m.seeley@elsevier.com>, “r mobed” <r.mobed@elsevier.com>, “Dick Blumenthal” <Dick_Blumenthal@blumenthal.senate.gov>, bonacic@senate.state.ny.us, hannon@nysenate.gov, “matt sheehey” <matt.sheehey@mail.house.gov>
Sent: Tuesday, May 26, 2015 9:37:05 AM
Subject: Lyme Carditis, Copyright © 2015 Elsevier Inc.

Infect Dis Clin North Am. 2015 Jun;29(2):255-268. doi: 10.1016/j.idc.2015.02.003.

Lyme Carditis.

Robinson ML1, Kobayashi T2, Higgins Y2, Calkins H3, Melia MT4.

http://www.ncbi.nlm.nih.gov/pubmed/25999222

Copyright © 2015 Elsevier Inc. All rights reserved.

May 26, 2015

Infectious Disease Clinics

Consulting Editor:
Helen W. Boucher, MD, FIDSA, FACP

 

To the Editors:

 

There are serious concerns regarding a number of comments found in the Johns Hopkins abstract on Lyme Carditis:

Johns Hopkins Comment #1“Lyme disease is a common disease that uncommonly affects the heart.”

In reference to the Johns Hopkins propaganda piece on Lyme Carditis I would like to call attention to the following studies:

In August of 2012 the CDC announced that the number of Lyme disease cases could be off by a factor of ten adjusting the number to 300,000 new cases annually. The results of the 2014 Lyme Carditis study below was based on 30,000 annual cases from 2001-2010 and must also be off by a factor of ten. The numbers presented in this CDC report are not likely to be representative of the true extent of the problem.

Update on Lyme Carditis, Groups at High Risk, and Frequency of Associated Sudden Cardiac Death — United States

http://www.medscape.com/viewarticle/834162

Here’s what the numbers look like when considering the miscalculation over the same nine year period: (2001–2010)

18,760 cases of Lyme carditis.

  7,020 died from all causes within a year of Lyme disease diagnosis.

      50 were classified as suspected cases of Lyme carditis–associated mortality.

This study also reports 42% of patients had an accompanying erythema migrans (bulls-eye rash). That’s substantially less than the CDC’s 60%-80% claim as found on the CDC’s 2011 Case Definition page:

http://wwwn.cdc.gov/NNDSS/script/casedef.aspx?CondYrID=752&DatePub=1/1/2011%2012:00:00%20AM

The following study reports the deaths of three seemingly healthy individuals who dropped dead from Lyme Carditis. It is important to recognize here that the cause of death was only identified due to the fact that the three Lyme patients were potential organ donors otherwise these cases would not have been identified or reported. We have to ask the question, “How many seemingly healthy Lyme patients have donated blood?” (Our blood supply is not screened for Lyme disease)

Three Sudden Cardiac Deaths Associated with Lyme Carditis — United States,

December 13, 2013 / 62(49);993-996

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm

Additional study:

Lyme disease: A case report of a 17-year old male with fatal Lyme carditis

E. Yoon correspondence, E. Vail, G. Kleinman, P.A. Lento, S. Li, G. Wang, R. Limberger, J.T. Fallon

http://www.ncbi.nlm.nih.gov/pubmed/25864163

Johns Hopkins Comment #2  “Like other manifestations of Lyme disease, carditis can readily be managed with antibiotic therapy and supportive care measures, such that affected patients almost always completely recover.”

Since we do not have a lab test to gauge treatment failure or success how do we know for certain that those who do not recover aren’t dealing with antibiotic resistant infection?

There appears to be a deliberate and coordinated downplay of the seriousness of Lyme disease with its life altering consequences. The Johns Hopkins article is no exception to the ongoing deception.

Respectfully submitted,

Carl TuttleHudson, NH 03051

Website: New Hampshire Lyme Misdiagnosis

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

Letter to the Editor, The Lancet Infectious Diseases Published May 2012

Additional References:

1. Undetected Lyme disease nearly killed Duke researcher
http://www.wral.com/lifestyles/healthteam/story/8331364/

Fatal Lyme carditis and endodermal heterotopia of the atrioventricular node.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429516/

2. Fatal pancarditis in a patient with coexistent Lyme disease and babesiosis. Demonstration of spirochetes in the myocardium.

http://www.ncbi.nlm.nih.gov/pubmed/4040723

3. Lyme borreliosis as a cause of myocarditis and heart muscle disease.

http://www.ncbi.nlm.nih.gov/pubmed/1915460

4. Cardiac Lyme disease – case report – A Fatality confirmed with Autopsy PCR study

Postmortem confirmation of Lyme carditis with polymerase chain reaction.

http://umaryland.pure.elsevier.com/en/publications/postmortem-confirmation-of-lyme-carditis-with-polymerase-chain-reaction%2896d9181d-9d52-4fc7-9149-287cd0123f84%29.html

5. Unclassified cardiomyopathy or Lyme carditis? A three year follow-up.
http://www.ncbi.nlm.nih.gov/pubmed/23575786

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

Circulation

560 Harrison Avenue, Ste. 502

Boston, MA. 02118

Phone:617-542-5100

Fax:617-542-6539

circ@circulationjournal.org

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.

Recognizing Lyme Carditis CDC Expert Commentary, Medscape Dr Forrester’s “CDC Expert Commentary

From: “Carl Tuttle” <runagain@comcast.net>

To: editor2@webmd.net

Cc: “m dales” <m.dales@elsevier.com>, “abi cantor” <abi.cantor@lancet.com>, “john mcconnell” <john.mcconnell@lancet.com>, “marcia balisciano” <marcia.balisciano@reedelsevier.com>, comments@nejm.org, news@medscape.net, circ@circulationjournal.org, “Robert Becker” <Robert.Becker@wolterskluwer.com>, info@wolterskluwer.com, dschlanger@webmd.net, avuolo@webmd.net, “richard horton” <richard.horton@lancet.com>, xdd2@cdc.gov

Sent: Wednesday, January 15, 2014 10:40:19 AM

Subject: Recognizing Lyme Carditis CDC Expert Commentary, Medscape

 

Recognizing Lyme Carditis

Joseph D. Forrester, MD, MSc

January 13, 2014

http://www.medscape.com/viewarticle/818773

To the Editors of Medscape,

In reference to Dr Forrester’s “CDC Expert Commentary” I would like to point out a few discrepancies.

1. Dr Forrester’s comment:

“More than 30,000 cases are reported annually in the United States.”

As of August 2013 the CDC announced that Lyme disease cases are ten times higher:

(Dr Forrester must not have received the memo)

CDC estimates Lyme disease hits 300,000 each year

2. Dr Forrester’s comment:

“second- or third-degree heart block occurs in approximately 1% of patients about whom clinical details are available”

If case numbers are off by a factor of ten it would certainly make sense that this estimate is questionable.

3. Dr Forrester’s comment:

“cases were identified in conjunction with a tissue bank and state and local health departments”

It is important to recognize here that the cause of death was only identified due to the fact that the three Lyme patients were potential organ donors otherwise these cases would not have been identified or reported.

4. Dr Forrester’s comment:

“Only 40% patients with Lyme carditis report having erythema migrans rash, as compared with 70%-80% of patients overall”

A recent published study independent of the CDC or its influence uncovered what the Lyme disease community has known all along as results were tabulated from a randomly selected population in a Lyme endemic region with no bias in this group to influence results:

Comparison of Lyme Disease Prevalence and Disease Reporting in an Endemic Area

http://article.sapub.org/10.5923.j.microbiology.20130306.11.html#Sec5

2% of the surveyed population reported a diagnosis of Lyme disease. 50% of respondents diagnosed with Lyme disease did not recall a tick bite, only 33% developed the bulls-eye rash and 50% remained ill after antibiotic treatment.

In contrast to those numbers the CDC claims that 80% of Lyme patients develop the bulls-eye rash and only a small subset of patients has persistent symptoms.

In addition, 16% of respondents experienced cardiac, rheumatologic, or neurological symptoms consistent with late-stage Lyme disease.

Comparing late-stage Lyme symptoms to the general population was a brilliant idea because we believe the vast majority of Lyme patients are already in the healthcare system being treated for everything else but Lyme.

The “CDC Expert Commentary” series on Medscape is little more than a propaganda effort by the CDC to maintain the illusion that our nation’s health protection agency has “got everything under control” but the more they publish the more obvious it becomes; Lyme disease has been grossly mismanaged.

Respectfully submitted,

Carl Tuttle

U.S. healthcare providers’ experience with Lyme and other tick-borne diseases

Carl Tuttle
Hudson, NH 03051Letter to the Editor, The Lancet Infectious Diseases Published May 2012
U.S. healthcare providers’ experience with Lyme and other tick-borne diseases

http://www.sciencedirect.com/science/article/pii/S1877959X14000429

Meghan E. Brett, Alison F. Hinckley, Emily C. Zielinski-Gutierrez, Paul S. Mead

Division of Vector-Borne Diseases,
Centers for Disease Control and Prevention,
Fort Collins, CO, USA
Attn: Alison F. Hinckley, Corresponding author

Dear Alison F. Hinckley,

In reference to the abstract listed in the subject line of this email; “four questions” about tick-borne diseases added to the 2009 Docstyles survey, I would like to call attention to question number two below.
1. Diseases encountered
2. Management of patients with early Lyme disease
3. Provision of tick-bite prophylaxis
4. Sources of information on tick-borne diseases

For some unknown rationale the CDC appears to be fixated on the acute or early stages of Lyme disease. Is this the only stage of the disease that the CDC believes physicians routinely encounter?
Please refer to the following study:

Comparison of Lyme Disease Prevalence and Disease Reporting in an Endemic Area
50% of respondents diagnosed with Lyme disease did not recall a tick bite, only 33% developed the bulls-eye rash and 50% remained ill after antibiotic treatment.
With that set of data most Lyme patients miss the narrow window of opportunity to treat the early stages of the disease. What questions have you asked the 2000 healthcare providers in the Docstyles Survey regarding disseminated or late stage Lyme disease?

There is absolutely no medical training whatsoever for the later stages of this disease so patients are often ping ponged though the medical community for years or decades before obtaining a late stage Lyme diagnosis usually ending in disability.

The CDC recently reported three cases of sudden cardiac death due to Lyme Carditis:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm
Three seemingly healthy young patients dropped dead of heart failure and no one suspected an infection until a pathologist readying heart tissue for a possible transplant noticed something wrong. It is important to recognize here that the cause of death was only identified due to the fact that the three Lyme patients were potential organ donors otherwise these cases would not have been identified or reported. None of the patients had evidence or a known history of erythema migrans (bulls-eye) rash. Our blood supply is not screened for Lyme disease so you have to ask the question, “How many seemingly healthy blood donors are carrying Lyme disease?

Late stage Lyme disease is an epidemic here in New Hampshire with a medical community practicing willful ignorance as it has become blatantly obvious that the CDC is only concerned with the acute stage of the infection while turning a blind eye to the more serious and life threatening stages of Lyme disease.

Respectfully submitted,

Carl Tuttle

Hudson, NH 03051