Tuttle: Lyme Carditis misinformation out of Johns Hopkins

My hero Carl Tuttle has posted another letter, written to Infectious Disease Clinics Editor regarding issues with Johns Hopkins's abstract on Lyme Carditis as it is based on CDC's outdated 30,000 stat on new cases, which was revised to more than ten times that, but J.H. did not adapt the abstract, accordingly. Go get 'em Carl.

/www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/10905981?tk=RLPnTiuabQk5WGiqj-B6Du5YZOgAWs18T0d6IaYo_U0&utm_source=petition_update&utm_medium=email



Lyme Carditis misinformation out of Johns Hopkins

Carl Tuttle
Hudson, NH
May 27, 2015 — Letter to the Editor regarding misinformation out of Johns Hopkins……
________________________________________
From: "Carl Tuttle" <[email protected]>
To: [email protected]
Cc: [email protected], [email protected], [email protected], [email protected],[email protected], [email protected], "y chi" <[email protected]>, "m seeley" <[email protected]>, "r mobed" <[email protected]>, "Dick Blumenthal" <[email protected]>, [email protected], [email protected], "matt sheehey" <[email protected]>
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 Tuttle
Hudson, 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/

2. Fatal Lyme carditis and endodermal heterotopia of the atrioventricular node.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429516/

3. 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

4. Lyme borreliosis as a cause of myocarditis and heart muscle disease.
http://www.ncbi.nlm.nih.gov/pubmed/1915460

5. 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

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

Wow. Just wow.

I'd heard that teaching hospitals are more open to alternative concepts because of all of the younger generation involved… but I can see your friend's point, that they gotta teach the standard of care that is the status quo.

We are doomed.

Well, for now. I have full faith that there will be a tipping point and this will change. I just haven't figured out what the catalyst is yet.

p

Unfortunately, with the massive financial interest at stake, it will have to be a shift in public sentiment. Only an emotional tug will make that happen. I suspect that the tipping point occurs when one of two things happen when we might see change and I think there is a lot to learn by studying how AIDs epidemic was addressed:

1. MAJOR celebrities, politicians and deities are afflicted firsthand in multiples, which influences private funding for research;

2. and/or as more and more of us mortals and those we know and love either become ill w/ lyme & co or become aware that lyme & co are the cause of their illness, and that the collusion has cost them their life savings, relationships, careers and in some cases, life. Numbers don't lie. CDC isn't going to revise their numbers "down". At the rate we're going, eventually, too many people will become infected to be "explained away". It's only a matter of time, as shameful as that is…

I see a parallel in the shift in public sentiment against mass incarceration. Decades ago, it was a rise in crime, brought on by an economic stagnation, which no one could solve except to implement harsh legislation and a culture of "get tough on crime" based on no scientific or evidence based knowledge, simply based on fear.

But now, 40 yrs later, our country is seeing the damage done. In part because we can no longer afford to lock people up but people are questioning the investment at the expense of education, healthcare and other community investment. Also evident (thanks to many studies) is the cultural cost to communities and families in locking up huge groups of people with little attention paid to what happens to reintegrate them back into society. People don't realize that most people return to their communities after incarceration. Because this has become such a huge issue affecting every community, some amazing things are being done that are part of a bipartisan solution. It's pretty amazing.

So, I hope that public sentiment shifts. It just needs a catalyst.

p