https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/23652655?cs_tk=ATdE1b8-67w5KSWl-lsAGpTysC-

More disinformation from IDSA President Cynthia Sears

Carl Tuttle
Hudson, NH
NOV 22, 2018 —
Please see the letter below addressed to U.S. Health Secretary Alex Azar, II correcting the misinformation he received from IDSA President Cynthia Sears. Cc: to the TBD Working Group.

The disinformation/propaganda regarding Lyme disease is rampant throughout all agencies as the IDSA continues to promote the 30 year-old dogma.

If you agree with what is presented below send an email/letter of your own to Secretary Azar asking to remove the management of Lyme disease from the U.S. Centers for Disease Control. The CDC has failed miserably and if the Lyme disease plague is left in their control we will have another decade of unimaginable pain and suffering.

Thousands of letters should drive home the point.

 

Letter to U.S. Health Secretary Alex Azar, II
——– Original Message ———-
From: Carl Tuttle <runagain@comcast.net>
To: Alex.Azar@HHS.GOV
Cc: tickbornedisease@hhs.gov, csears@jhmi.edu, jaucott2@jhmi.edu
Date: November 21, 2018 at 11:24 AM

Subject: Letter sent by IDSA president, Cynthia Sears, MD
November 21, 2018
The Honorable Alex Azar, II
Secretary
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Azar,
I understand that you are in receipt of a letter sent to you by IDSA president, Cynthia Sears, MD, FIDSA regarding concerns over the recommendations from the Tick Borne Disease Working Group. (See attachment)

https://www.dropbox.com/s/pnpzz5x7421m2b0/IDSAComments%20TBDWG.pdf?dl=0
Dr. Sears should be aware that untreated streptococcal pharyngitis progresses to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated HIV infection progresses to AIDS with significant disability and death. What happens to the patient with Lyme disease who goes months, years or decades before diagnosis?

Dr. Neil Spector’s serologic tests were repeatedly negative missing his Lyme disease which led to the destruction of his heart requiring a transplant. https://www.bayarealyme.org/blog/story/neil-spector/

And I’m sure you have seen the lawsuit in the Supreme Court of Pennsylvania regarding a misdiagnosis of Multiple Sclerosis due to four negative serology results for Lyme disease. http://www.pacourts.us/assets/opinions/Supreme/out/Majority%20Opinion%20%20ReversedVacatedRemanded%20%2010373940443079867.pdf?cb=1

These are just two examples of how faulty/misleading antibody tests can alter a person’s life; proof that we are dealing with a very serious life-altering/life-threatening infection when left untreated. Dr. Sears does not discuss the consequences of untreated Lyme disease in her viewpoint.

Additional statements from Cynthia Sears, MD:
Epidemiology and Ecology Chapter

Statement# 1 “According to the Centers for Disease Control and Prevention, since 2004, there have been seven new human tick-borne pathogens discovered, and it is necessary to characterize these novel infections as quickly and accurately as possible.”

There may be a species of Borrellia yet to be “characterized” in the Hudson Valley, NY area as reported by Dr. Sin Lee of Milford Molecular Diagnostics. In August of 2013 the CDC provided 32 blind coded serum samples to Milford Laboratory Services for the purpose of evaluating the accuracy of a new diagnostic test for Lyme disease; “Nested PCR and Sequencing.”
New species of Borrellia in the Hudson Valley, NY area?
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/15557618

Excerpt: “Dr. Gary Wormser of New York Medical College provided the serum samples where this novel Borrelia was isolated. Not only was a novel Borrelia discovered but there was a second pathogen (Borrelia miyamotoi) found in one sample which was 2-tier serology-negative. In two of the samples containing Borrelia burgdorferi, one sample was negative and one positive for 2-tier serology making it obvious that current testing for Lyme disease has serious flaws.

Dr. Lee’s publication:
Detection of Borreliae in Archived Sera from Patients with Clinically Suspect Lyme Disease
http://www.mdpi.com/1422-0067/15/3/4284

“The #9 patient [Hudson Valley, NY] was diagnosed with “neurologic Lyme disease” and had been treated before the serum sample was drawn. Direct DNA sequencing of the nested PCR amplicon confirmed that the sequence of the amplicon is that of a novel borrelia in the relapsing fever group….”

I would have to disagree with Dr. Sears’ assessment that the CDC is “characterizing these novel infections as quickly and accurately as possible.” To my knowledge there was no follow-up to Dr. Lee’s discovery five years ago.

Statement# 2 “While IDSA acknowledges that the CDC case definition for Lyme disease is intended for use as an epidemiological tool, it is incorrect to promulgate the notion that the components of the surveillance definition should not be used for clinical diagnosis.”

The restrictive case definition of two out of three IgM Western blot bands and five out of ten IgG bands set forth at the 1994 Dearborn Conference was strictly established for surveillance purposes only but has caused untold pain and suffering for decades as patients who do not meet these strict criteria are often told they do not have Lyme disease. Please see the attached letter from Dr. David Volkman addressed to past CDC director Thomas Frieden, MD. asking to revise the restrictive case definition.
https://www.dropbox.com/s/sl5x3gzguowpj6n/Volkman%20letter%20to%20Frieden.doc?dl=0

Causes and Treatment Chapter

Statement# 3 “Conversely, there is not a pressing need for additional federally supported research on antibiotic treatment for Lyme disease.”

The following pilot study recently identified chronic Lyme disease in twelve patients from Canada. All of these patients were culture positive for infection (genital secretions, skin and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33

A PubMed.gov search will uncover hundreds of papers reporting persistent Borrelia infection. An astute fifth-grade student with access to PubMed would have no trouble finding these published studies.

For example:
Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Department of Neurology, and Division of Infectious Diseases, Albert Einstein College of Medicine, and Department of Neurology, State University of New York at Stony Brook, New York, NY., USA
Abstract
We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.
____________________

Mr. Secretary, we have an incurable disease spreading across America deceitfully misclassified as a low-risk and non-urgent health issue which is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin.
Public outcry has been ignored for nearly four decades while the Centers for Disease Control sat on evidence that this infection was not easily treated with a one-size-fits-all treatment approach as dictated by the Infectious Diseases Society of America. That evidence is identified in the attached letter to Brenda Fitzgerald, MD with supporting documentation in the form of laboratory tests results from Fort Collins, CO and autopsy reports identifying the destructive nature of an infection capable of death and disability. I respectfully ask that you read that letter now.
https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0

Diagnosis Chapter

Statement# 4 “The NIH and CDC initiated a Serum Reference repository in 2008 and, at the end of 2011, began making standardized Lyme disease cases with serum samples available to the scientific community on a broad basis for testing and comparison of new diagnostic tests.”

How can the CDC use these serum samples from their serum repository to gauge the accuracy of newly developed Lyme disease test kits when they don’t even know what they contain? (As described in Statement#1)

Statement# 5 “CDC is also developing next-generation direct diagnostic tests (e.g., biomarkers) to improve upon current serological tests. However, the development, validation and commercial distribution of new tests can take years and millions of dollars.”

Direct detection laboratory methods for the early detection of Lyme disease i.e.; DNA/Sanger Sequencing, NIST which has been “shown to detect the disease near the time of infection” but has been put on the shelf or the new PHELIX Phage based PCR all offer solutions that shouldn’t take years to develop.

As this runaway plague destroys countless lives nationwide we don’t have years to wait for accurate diagnostics especially if the delay is due to focus on metabolomics which CDC employees hold patents. The 1980 Bayh–Dole Act or Patent and Trademark Law Amendments Act (United States legislation dealing with intellectual property arising from federal government-funded research) has had a detrimental effect on the way Lyme disease has been handled here in the US as government employees can benefit financially through patents. Is the right decision being made or is the promise of financial gain the driving force?
CDC Employee Patent: https://www.google.com/patents/EP2805168A1?cl=en
Inventor Theresa M. RUSSELL, Barbara J.B. JOHNSON

Access to Care Chapter

Statement# 6 “Increased federal funding for responses to tick-borne diseases is vital, but this funding cannot come at the expense of funding for other diseases, including HIV.”

With over 300,000 new cases of Lyme disease per year, Lyme now has an infection rate six times the AIDS epidemic and twice as prevalent as breast cancer. At what point in time will the U.S. Centers for Disease Control escalate Lyme disease to Highest Alert? (With funding appropriate to the level of threat to public health)

Every single citizen of the United States is a single tick bite away from experiencing this travesty as Lyme disease is capable of producing sudden death with no warning signs; [1,2,3] heart damage requiring transplant, [4] paralysis with seizures, [5] lymphoma [6] and persistent infection after antibiotic treatment [7,8,9,10,11] along with congenital transmission [12] and ability to create wheelchair bound patients [13] yet there are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease.

We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control.
A plague denied; essentially classifying this disease as a low-risk and non-urgent health risk.

Lyme Disease is a U.S. public Health Disaster.

Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH

Cc: Tick Borne Disease Working Group
Attachments:
1. Letter from IDSA president, Cynthia Sears, MD
2. Letter to Brenda Fitzgerald MD past Director CDC
3. Letter from Dr David Volkman to Tom Frieden past Director CDC
References: (Please read them!)
1. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden
Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
Excerpt:
“Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”
2. CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w
3. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis
http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes
4. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
http://www.dukechronicle.com/articles/2015/05/28/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy#.VYlYnxtViko
Dr Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for four years.
5. Nashua Mom in the ‘Lyme Light’ on Katie Couric Show
http://patch.com/new-hampshire/nashua/nashua-mom-talks-chronic-lyme-on-katie-couric-show
Fifth-grade teacher Kelly Downing was paralyzed from the neck down and interviewed by Katie Couric.
6. Infection by Borrelia burgdorferi and cutaneous B-cell lymphoma (Cancer)
https://www.ncbi.nlm.nih.gov/pubmed/9331890
Specific DNA sequences of Borrelia burgdorferi were identified in cutaneous lesions from 9 patients (follicle center lymphoma: 3/20; immunocytoma: 3/4; marginal zone B-cell lymphoma: 2/20; diffuse large B-cell lymphoma: 1/6).
7. Application of Nanotrap technology for high sensitivity measurement of urinary outer surface protein A carboxyl-terminus domain in early stage Lyme borreliosis.
http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0701-z
41 of 100 patients under surveillance for persistent LB in an endemic area were positive for urinary OspA protein after antibiotic treatment.
8. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
http://danielcameronmd.com/culture-evidence-of-lyme-disease-in-antibiotic-treated-patients-living-in-the-southeast/
Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment.
9. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274
Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.
10. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html
The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy.
11. Scotty Shelton and Persistent Infection in Saginaw MN
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/11685820
“Scotty’s brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. We are now testing other tissues. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly highly positive.”
12. Congenital Transmission of Lyme/TBD
https://www.dropbox.com/s/z10em0szgpm8bll/Congenital%20Transmission%20of%20Lyme%202015.doc?dl=0
13. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’
Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’
NEW YORK (CBSNewYork) — A 12-year-old girl who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York Thursday was “the most precious moment of my life
Sears Inducted as President of the Infectious Diseases Society of America
Sears Inducted as President of the Infectious Diseases Society of America
Cindy Sears, professor in the Division of Infectious Diseases, was inducted as president of the Infectious Diseases Society of America…
https://medicine-matters.blogs.hopkinsmedicine.org