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IDSA/CDC 2017 Attacks On Lyme Community

IDSA/CDC 2017 Retaliatory Attacks 
On Sick Patients & Their Doctors

Retaliation/Attacks- In response to the new definition of chronic Lyme publication, CDC & IDSA members have once again arched their backs, sharpened their claws and are ramping up their attacks on innocent patients, parents of sick children, dedicated doctors treating Lyme patients, volunteer patient advocates and organizations, and our advanced tick borne disease labs.  

Often, in their rush to be published they don't even bother to do any new research, they simply recycle their old stale, inaccurate facts and publish them anew.  

CDC Motto- Beatings will continue until morale improves.

IDSA Motto- Have you flogged a Lyme patient today?


To kick-off their latest campaign, the new Definition of Chronic Lyme Disease paper (Stricker, et. al. May 9, 2017) was immediately removed from the Journal's website.  It is still missing.  Here is a pdf with the article.

Then, in their typical retaliation style, the CDC immediately launched a new series of attacks against patients to try to deny them treatment and insurance coverage by way of an article in MMWR- Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease —  June 16, 2017 

Within a month, inaccurate (and monotonous) articles by CDC and IDSA members were hitting the main stream media, upsetting sick patients, draining them once again of hope, and doing nothing to promote wellness or solve the massive problems associated with the diagnosis and treatment of Lyme and tick borne infections. 

The repeated attacks by the CDC/IDSA are not just retaliatory- they are evil, unethical and those involved are abusing their power and wasting millions of tax-payer dollars.  

Their shameful actions beg the question- why do members of medical societies (Infectious Diseases Society of America- IDSA) and/or government agencies (Centers for Disease Control- CDC) continue to lead the charge to retaliate and attack the very patients and doctors they are sworn to help each time an advancement is made for the betterment of the public? 

Lyme and tick borne diseases are known to be insidious, disabling and sometimes deadly diseases that the CDC and IDSA have not been able to adequately prevent, diagnose, treat or cure.  Collectively, the IDSA & CDC have totally failed to show any progress or advances over the past three decades.  This policy contributes to the many suicides found in Lyme & tick borne disease patients. ( New Article Here 

The only goal the IDSA/CDC appears to have is to continue to try to block others attempts to move forward in a quest to find answers, develop more accurate tests and hopefully find a cure for an exploding pandemic of infectious tick borne diseases that affects well over 300,000 people in the USA each year.  

Individuals involved in these vile attacks against sick patients are the discredited 2006 IDSA Lyme Disease Guidelines authors (some responsible for treating children), members or employees of the CDC/IDSA along with a handful of other 'profits before patients' supporters. 

You will also see a few reporters jumping on their band wagon who can't be bothered to do their jobs (research) and as a result print incredibly inadequate and inaccurate articles that undermine the attempts of sick patients to get help.   

This has got to be medicine at its worst.  How long will it be allowed to continue? 


"You will never find a more wretched hive of scum and villainy."


1.  COVER STORY- Infectious Diseases in Children, June 2017

Paul M. Lantos, MD. Duke University School of Medicine, Durham, NC 

Eugene Shapiro, MD. Yale School of Medicine, New Haven, CT 

H. Cody Meissner, MD. Tufts Medical Center, Boston MA

Sunil Sood, MD. Hofstra Northwell School of Medicine, Hempstead, NY

2.  Washington Post June 15, 2017

Christina Nelson- medical epidemiologist / author of report by the Centers for Disease Control and Prevention.  Article By Lena H. Sun June 15 at 1:00 PM 



3.  Healio Infectious Diseases in Children- June 2017- Johan S. Bakken, MD, PhD, FACP, FIDSA, past president of IDSA and an infectious disease physician at St. Luke’s Health Care System in Duluth, Minnesota

No evidence to support prolonged antibiotic use for Lyme disease

4. Letter to State Health Departments from the CDC- Anna Perea- Warning of "devastating health effects, including death" with Prolonged Antibiotic Treatment for Lyme Disease- June 15, 2017 

5.  Some Lyme Treatments Do More Harm Than Good- Kathleen O'Brien- Star Ledger, NJ- June 15, 2017





Authors From- Center for Diseases Control/ Colorado Department of Public Health and Environment; VA Palo Alto Health Care SystemDivision of Infectious Diseases and Geographic Medicine, Stanford University, Stanford, California; LifeBridge Health, Westminster, Maryland; 2 from Kaiser Permanente, Santa Rosa, California; University of California, San Francisco, California; Yale University School of Medicine, New Haven, Connecticut; Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, CDC 


8. Report reveals years of suffering, death from therapies for “chronic Lyme”
June 16, 2017- Beth Mole ( beth.mole@arstechnica.com ) ARS Technica [Even the comments are ignorant]

9.  Comment by L Ide- on Pub Med- Addressed to Sing Han Lee- Stating "Long-term Antibiotics Are Rubbish". June 19, 2017 

10.  Report on Danger of Antibiotic Treatment- June 20, 2017- Times Union- Claire Hughes

11.  Treatment of 'Chronic Lyme': Plenty of Risk, No Benefits- June 16, 2017- Josh Bloom (owns 25 patents)- American Council on Science & Health

Bringing up the rear end that is both OLD news and inaccurate...





12.  'Chronic Lyme Disease': A Troubling Diagnosis- July 18, 2017- Matthew Nojiri






~ ~ ~

Responses from the Lyme Community

For Over Three Decades 
Sick Patients Have Been Forced To
Fight For Their Lives & Those of The Children
In A War They Didn't Create


1.  Original PR- Chronic Lyme Disease: a Case Definition at Last- May 9, 2017

2.  Definition of Chronic Lyme Disease- May 9, 2017

3.  This Paper Will Generate Great Fires In The Medical & Scientific World- May 11, 2017

4.  Old vs. New Definition of Chronic Lyme Disease- May 14, 2017

5.  Retaliation For New Chronic Lyme Definition- June 2017

6.  LDA Letter- Who Controls Fake Lyme Disease News?- June 14, 2017



10.  Chronic Lyme Disease Treatment:  Science vs. Anecdotes.  Johnson, Stricker. June 17, 2017

11.  CDC Ignores Ethics, Attacks "Chronic Lyme"- June 15, 2017- Touched By Lyme, Dorothy Kupcha Leland.

12.  Response to Beth MoleTo Her Article- "Report reveals years of suffering, death from therapies for "chronic Lyme disease". ARS Technica- June 16, 2017 

13.  Repost- An Open Letter To Editors of Washington Post- June 18, 2017 LymeDisease.org

14.  Two Responses By Sin Hang Leeon Pub-Med Addressing the CDC's Original Article & Comment By L Ide- June 18th & 19th, 2017 (see #6 above).

15. Written Response to  'Chronic Lyme Disease': A Troubling Diagnosis- July 18, 2017- by Matthew Nojiri (see #12 above). 


If you have an article to contribute 
Please email it for inclusion on this list.  
Thank you!


One Example of Many Previous Inaccurate Articles
Paul Lantos- Duke University

"Virtually no one has died from Lyme disease..."
"Thus, the term ‘chronic Lyme disease’ doesn’t really mean anything."
Lantos, Paul- Lyme disease poses risk for patients visiting or living in the Northeast- June 27, 2011.  
Healio- Infectious Diseases in Children


Additional Documentation

1. ** A partial list of obituaries and death notices includes people who have died from following the IDSA/CDC inadequate Lyme treatment protocols and went on to suffer and become chronically ill, disabled and some lost their lives.

2.  ** CDC reported multiple deaths from Lyme disease between 2002- 2007.
Their report is linked below. Scroll down nearly all the way to find the Table 12.

Summary of Notifiable Diseases --- United States, 2009

Weekly

May 13, 2011 / 58(53);1-100 
Table 12.  Number of deaths from selected nationally notifiable infectious diseases --- United States, 2002--2007

                                                             2002         2003            2004            2005            2006           2007

Lyme disease¶¶

6

4

6

7

5

8

Total "Reported" Deaths- 36
Link Here
More Details Here


3.  ** In the article “PCR for diagnosis of Lyme disease: Is it useful?" Christine Nelson says: “Two-tiered serology remains the mainstay of laboratory testing for Lyme disease”.  A recent paper demonstrates that the two-tier test can generate 500 to almost 600 time more false negative results than testing for HIV.

https://www.ncbi.nlm.nih.gov/pubmed/28435311

Also Table S2 based on a meta analysis of the last 20 years of data published in 19 peer reviewed papers, by 89 authors including Steere, Wormser, Strl, etc. shows that the 2 tier test has an average sensitivity of 33% for clinical samples.

https://www.ncbi.nlm.nih.gov/pubmed/27920571

If this is applied to the 2013 CDC estimate of 300,000 Lyme disease cases it indicates 1 Million cases in the US at that time. And that does not include undiagnosed and misdiagnosed cases.

Contributed by- Michael Cook, Independent Researcher, Published Author- Highcliffe Dorset UK

4.  New Article- Suicide and Lyme and associated diseasesDr. Robert Bransfield- June 16, 2017  (Full article can be downloaded from the site with the abstract)  Link Here

5.  The Infectious Diseases Society of America (IDSA) doesn't just want Lyme patients to not have additional antibiotics (beyond the 2-3 weeks they recommend) when they relapse or remain ill, they want them to have NO antibiotics of any kind at all, even though many of the ones they've officially recommended against are the exact same ones that have been proven in multiple studies to kill "persisters" and are improving patients clinically.

They also say no to any Bartonella treatment.  How barbaric to say the least!  Here is some information on bartonella.  It is a serious disease that is suppose to be treated by any doctor in any patient, unless you are a Lyme disease patient.  Are they trying to kill us?

They also don't want sick patients to have an over-the-counter multivitamin or any nutritional supplements!  Next they'll try to take away our teddy bears too! 

Here is their original "YOU CAN'T HAVE THIS" list from their infamous and discredited 2006 IDSA Lyme disease guidelines (pg. 1107).  They just keep adding to this earlier list and still they are not offering any solutions, treatments, or cures for those who are deathly ill.

Guidelines are suppose to be designed to help sick patients, not kill them.  What other medical societies have lists telling patients they can't have treatment at all, much less even the simplest things like a vitamin?  Only the IDSA.  



6.  The IDSA/CDC kicked us for a LONG time because we didn't have an official definition for "chronic Lyme disease".  So, Dr. Stricker, et. al. defined "chronic Lyme disease" after reviewing more than 700 studies, and they had it published.

Now the beatings suddenly are intensified.  You can't please these people, no matter what you do.

One example- Paul Lantos, from Duke University Medical School- Division of Pediatrics infectious Diseases (heaven help our children) published the article below.  Note the bold sections, and added comments are in red and bracketed. 

 Expert Rev Anti Infect Ther. 2011 Jul;9(7):787-97. doi: 10.1586/eri.11.63.

Chronic Lyme disease: the controversies and the science.

Author information

1
Departments of Internal Medicine and Pediatrics, Division of Pediatric Infectious Diseases, Hospital Medicine Program, Duke University Medical Center, DUMC 100800, Durham, NC 27710, USA. paul.lantos@duke.edu

Abstract

The diagnosis of chronic Lyme disease has been embroiled in controversy for many years. This is exacerbated by the lack of a clinical or microbiologic definition, and the commonality of chronic symptoms in the general population. [To end the controversy and move forward a definition is needed- right?]

An accumulating body of evidence suggests that Lyme disease is the appropriate diagnosis for only a minority of patients in whom it is suspected. [<No unbiased science to support that statement and millions of lives disrupted saying otherwise.] 

In prospective studies of Lyme disease, very few patients go on to have a chronic syndrome dominated by subjective complaints. [Current figures are, at a minimum- over 150,000 per year in the US alone.  Multiply that by 30 years= over 4.5 MILLION.] 

There is no systematic evidence that Borrelia burgdorferi, the etiology of Lyme disease, can be identified in patients with chronic symptoms following treated Lyme disease. [Other than the 1,000 plus scientific articles describing it in the literature over the last 40 years.]

Multiple prospective trials [total of 3 very flawed trials, performed over a decade ago, with results based on lab tests proven to miss 75% of those who are infected] have revealed [have been twisted to report] that prolonged courses of antibiotics neither prevent nor alleviate such post-Lyme syndromes. 

Extended courses of intravenous antibiotics have resulted in severe adverse events [adverse events are not documented. They are hear-say and were purposely solicited by those with a financial stake in the out-come], which in light of their lack of efficacy, make them contraindicated.

Link Here

7.  In this study, from the infectious disease division at Drexel, more than half (55%) of 41 disease guidelines published by Infectious Diseases Society of America (IDSA) were based only on opinion with no evidence based on any clinical trials or case studies.

Arch Intern Med. 2011 Jan 10;171(1):18-22. doi: 10.1001/archinternmed.2010.482.

Analysis of overall level of evidence behind Infectious Diseases Society of America practice guidelines.

Author information

1
Division of Infectious Diseases and HIV Medicine, Department of Medicine, Drexel University College of Medicine, Philadelphia, PA 19102, USA.

Lee DH, Vielemeyer O. Analysis of overall level of evidence behind Infectious Diseases Society of America practice guidelines. Arch Intern Med. 2011;171: 18–22. doi:10.1001/archinternmed.2010.482

Link Here-  http://www.ncbi.nlm.nih.gov/pubmed/21220656

[Thanks to Michael Cook for supplying this information.]