Tag Archives: disease

Letter to CDC and ALDF (American Lyme Disease Foundation) critical of their description for Lyme being a “nuisance disease” and using manipulated “evidence-based” clinical trials to fit a predetermined outcome’

From: “Carl Tuttle” <runagain@comcast.net>
To: “Sylvia Burwell” <Sylvia.Burwell@hhs.gov>
Cc: txf2@cdc.gov, cvu0@cdc.gov, eib6@cdc.gov
Sent: Tuesday, December 29, 2015 12:55:25 PM
Subject: Phillip Baker and the 21st Century Plague

Dec 29, 2015

Centers for Disease Control

Atlanta, GA

To members of the CDC;

We need to know why this life-altering infection has been misclassified as a simple nuisance disease and then swept under the rug. Without a congressional investigation highlighting this question the deception will continue indefinitely.

This thirty year deception to the American people (and now the world) will come to an end in 2016 as a growing worldwide disabled Lyme community is looking for indictments. Please see the letter below addressed to the Executive Director of the American Lyme Disease Foundation.

Carl Tuttle

Phillip Baker and the 21st Century Plague

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14500086

 

Dec 6, 2015

American Lyme Disease Foundation, Inc.
P.O. Box 466
Lyme, CT 06371
Attn: Phillip J. Baker, Ph.D., Executive Director
Email: Executivedir@aldf.com

To: Phillip Baker,

I would like to call attention to your statement found in the following ALDF document:

From the Desk of the Executive Director:

Ending the Lyme Disease Wars
http://www.aldf.com/wp-content/themes/ALDF/pdf/Ending_the_Lyme_Wars_2.pdf

Quote from Phillip Baker:

“To conduct a clinical trial of such magnitude for an infectious disease that is neither fatal nor life-threatening would be enormously expensive….”

On December 13, 2013, The CDC published a report describing three cases of sudden cardiac death associated with Lyme carditis.
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w

From the CDC report:

“None were known to have had a tick bite and none had usual stigmata of Lyme disease such as erythema migrans.” (Bulls-eye rash)

Three seemingly healthy individuals dropped dead from heart failure where there were no warning signs of disease. 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)

Other Fatal/Life-threatening studies:

1. Lyme disease: 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
We describe a case of a 17-year-old adolescent who died unexpectedly after a 2-week viral-like syndrome. Postmortem examination was remarkable for diffuse pancarditis characterized by extensive infiltrates of lymphocytes and focal interstitial fibrosis. In the cardiac tissue, Borrelia burgdorferi was identified via special stains, immunohistochemistry and PCR.

2. Fatal Lyme carditis and endodermal heterotopia of the atrioventricular node.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429516/
A fatal case of Lyme carditis occurring in a Suffolk farm worker is reported. Post-mortem examination of the heart showed pericarditis, focal myocarditis and prominent endocardial and interstitial fibrosis

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
A 66-year-old man developed fever, chills, myalgias, three erythematous skin lesions, and transient left eyelid lag. Because of persistent fever, he was hospitalized 4 weeks after the onset of disease; a peripheral blood smear showed Babesia microti in 3% of his erythrocytes. Eighteen hours later, he died unexpectedly. Autopsy showed pancarditis with a diffuse lymphoplasmacytic infiltrate, and spirochetes were found in the myocardium.

4. Lyme borreliosis as a cause of myocarditis and heart muscle disease.
http://www.ncbi.nlm.nih.gov/pubmed/1915460
These findings give further evidence that LB is associated with chronic heart muscle disease.

5. Cardiac Lyme disease – case report – A Fatality confirmed with Autopsy PCR study
http://umaryland.pure.elsevier.com/en/publications/postmortem-confirmation-of-lyme-carditis-with-polymerase-chain-reaction%2896d9181d-9d52-4fc7-9149-287cd0123f84%29.html
We describe the case of a 37-year-old Caucasian man with a 1-month history of fevers, rash, and malaise who died unexpectedly on the day after he underwent medical evaluation.

6. Unclassified cardiomyopathy or Lyme carditis? A three year follow-up.
http://www.ncbi.nlm.nih.gov/pubmed/23575786
We present the case of a 41 year-old Caucasian woman referred to our hospital with symptoms of fatigue, progressive exertional dyspnoea, supraventricular cardiac arrhythmia, and an enlarged heart revealed on chest radiography

7. 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
Duke University Professor Neil Spector required a heart transplant after experiencing four years of undiagnosed-untreated Lyme disease.

8. Lyme Deaths From Heart Inflammation Likely Worse Than We Thought
http://www.forbes.com/sites/judystone/2015/09/04/lyme-deaths-from-heart-inflammation-likely-worse-than-we-thought/

9. FISH method using Molecular Beacon DNA probes to directly visualize with a microscope, Disease producing Borrelia in Body tissues.
https://www.gofundme.com/7tbbf5zw
In this case a 19 month old male died (unknown causes) and a Medical Examiner Autopsy was performed. At the request of the parents, glass slides from the medical examiner’s office were sent to me from the autopsy heart and autopsy brain. FISH methods demonstrated an overwhelming number of Borrelia spirochetes in both Heart and in Brain. Conclusion: Cause of Death: Overwhelming Borrelia infection, not considered by the physicians caring for the child.
__________________________________________

Lyme disease is a life altering infection when not treated immediately but has been misclassified as a simple nuisance disease; easily treated with a one-size-fits-all treatment guideline. [1] There appears to be a deliberate and coordinated downplay of the seriousness of Lyme disease with its life altering consequences. [2]

A recent taxpayer funded NIH study designed by Dr Gary Wormser of New York Medical College is one example of the ongoing effort to downplay the seriousness of Lyme disease as he excludes the sickest of patients focusing on the acute stage of disease after early treatment. The deceptive results of his study is then assumed to apply to the entire patient population giving the impression that Lyme is a simple nuisance disease and patients who are severely disabled are somehow delusional. A complaint was registered with the Office of Research Integrity. [3]

Wormser’s inaccurate conceptualization of disease (and personal bias) has influenced the nation’s perceptions and response to Lyme disease. We are dealing with a life altering infection misclassified as a simple nuisance disease as reported by the Lyme patient population (and the scientific literature) for the past thirty years.

As this epidemic continues to spiral out of control we are hearing stories of death, [4] total disability and suicide. Celebrities have come forward with their stories as well: Amy Tan, [5] Singer Averil Livigne, [6] Real Housewives of Beverly Hills star Yolanda Foster, [7] Rebecca Wells [8] and Ashley Olsen. [9]

Quote from Senator Richard Blumenthal: “Today for me culminates more than a decade of work and probably a decade more, because I’ve seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease”
Source: http://ctmirror.org/2011/07/18/blumenthal-takes-lyme-disease-fight-senate/

There is an overwhelming mountain of evidence indicating that we have been dealing with an antibiotic resistant/tolerant superbug [10] deceptively concealed by the CDC, Infectious Diseases Society of America and American Lyme Disease Foundation. (Collusion) [11]

Suppressed evidence:

Peer Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases
http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf

Over 31,500 individuals from across America and twenty one countries have signed the petition calling for a congressional investigation into the deliberate and well orchestrated mishandling of Lyme disease. [12]

The mishandling of Lyme disease by the CDC, IDSA and ALDF has been commonly referred to as a thee-ring circus and you Philip Baker have been identified as a ring leader.

Carl Tuttle
Hudson, NH

When “evidence based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science?

Cc: Senators Blumenthal, Ayotte, Gibson, Hannon, Serino and Bonacic. Countess MAR, member of the House of Lords and Senator Mckenzie Parliament of Australia

 

REFERENCES:
_____________________________

1. Lyme is not your average “Nuisance Disease”
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/11340872

2. Lyme Patient Advocates Document Misinformation Campaign by IDSA Guidelines Panelists
http://www.reuters.com/article/2015/10/07/patient-centered-care-idUSnPnq0BkH+45+PRN20151007#MuE7iL0KugrsARIZ.97

3. Scientific misconduct or criminal offense?
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14006106

4. Maryland Lyme Disease Memorial Site
https://sites.google.com/site/marylandlyme/memorial-page

5. Amy Tan: SLyme Disease: How A Speck Changed My Life Forever
http://www.humanthology.com/lyme-disease/2014/9/15/slyme-disease-how-a-speck-changed-my-life-forever

6. Averil Lavine: Averil Lavigne Opens Up About Her Health Crisis: ‘I Was Bedridden for 5 Months’
http://www.people.com/article/avril-lavigne-lyme-disease-bedridden

7. Yolanda Foster: Yolanda Foster on Lyme Disease: I’ve Lost Ability to Read, Write, Watch TV
http://www.usmagazine.com/celebrity-news/news/yolanda-foster-on-lyme-disease-ive-lost-ability-to-read-write-201519

8. Rebecca Wells, battling Lyme disease, translates her illness in ‘Ya-Ya Sisterhood’ sequel
http://www.seacoastonline.com/article/20050331/News/303319961

9. Grim Prognosis: Ashley Olsen’s ‘Symptoms Have Gotten Worse’ In Her Fight With Debilitating Lyme Disease
http://radaronline.com/celebrity-news/ashley-olsen-lyme-disease-prognosis-worsens/

10. Researchers’ discovery may explain difficulty in treating Lyme disease
http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

11. “COLLUSION” to deny a disease; chronic Lyme
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/10701985

12. Calling for a Congressional investigation of the CDC, IDSA and ALDF
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

September 8, 2015 – Documentation of disabilities and deaths caused by undiagnosed or misdiagnosed Lyme disease.

From: “Carl Tuttle” <runagain@comcast.net>
To: “sherwood gorbach” <sherwood.gorbach@tufts.edu>
Cc: “robert nadelman” <robert_nadelman@nymc.edu>, “gary wormser” <gary_wormser@nymc.edu>, “Dick Blumenthal” <Dick_Blumenthal@blumenthal.senate.gov>, bonacic@senate.state.ny.us, “Serino” <Serino@nysenate.gov>, “Kemp Hannon” <hannon@nysenate.gov>, “Neva Varsalone (Ayotte)” <neva_varsalone@ayotte.senate.gov>, “bud fitch” <bud_fitch@ayotte.senate.gov>, “Daniel Auger” <Daniel_Auger@ayotte.senate.gov>, “Shaylyn Kelly” <Shaylyn_Kelly@ayotte.senate.gov>, “matt sheehey” <matt.sheehey@mail.house.gov>
Sent: Tuesday, September 8, 2015 12:19:51 PM
Subject: Long-Term Assessment of Health Related Quality of Life in Patients with Culture-Confirmed Early Lyme Disease

Published June 25, 2015

Long-Term Assessment of Health Related Quality of Life in Patients with Culture-Confirmed Early Lyme Disease

http://cid.oxfordjournals.org/content/early/2015/04/16/cid.civ277

Authors: Gary P. Wormser, Erica Weitzner, Donna McKenna, Robert B. Nadelman, Carol Scavarda, Irida Molla, Rhea Dornbush, Paul Visintainer, and John Nowakowski

Sept 8, 2015

Clinical Infectious Diseases
Tufts University School of Medicine
200 Harrison Avenue
Posner Basement
Boston, MA 02111
Attn: Editor-in-Chief, Sherwood L. Gorbach, M.D

Dear Dr Gorbach,

Once again Wormser is fixated on the acute stage of Lyme disease, “Culture-Confirmed Early Lyme Disease” whereas the vast majority of Lyme patients disabled from Lyme disease went months, years or decades before diagnosis and initial treatment. Patients with a prolonged exposure to infection before treatment are almost always incapacitated.

It is this class of patient that has been deliberately ignored by Wormser who has misclassified Lyme as a “nuisance” disease; easily treated and cured with a one-size-fits-all treatment approach with only a small percentage experiencing minor aches and pains after treatment; Post Lyme Disease Syndrome.

The fact of the matter is Lyme disease can become a life altering infection if not treated immediately. For example:

1. Duke University Professor Neil Spector[1] required a heart transplant after experiencing four years of undiagnosed-untreated Lyme disease. Spector’s book, “Gone in a Heartbeat” discusses the dismissive attitude of physician colleagues and importance of patient self advocacy.

2. Lumberman Scotty Shelton[2] of Saginaw MN was on antibiotics for 7+ years and died in Hospice recently. His tissues were harvested and sent to Excalibur Lab in OK where Paula Pierce performed the tissue prep and original staining. Scotty’s brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly, highly positive. Duplicate samples were sent to Alan MacDonald who uncovered similar results.

3. Amy Tan,[3] author of the book, “The Joy Luck Club” was severely disabled neurologically.

4. Singer Averil Livigne[4] was bedridden five months before obtaining a diagnosis.

5. Real Housewives of Beverly Hills star, Yolanda Foster[5] reports losing her ability to read, write, or watch TV.

6. A CDC study reports the deaths of three seemingly healthy individuals who dropped dead from Lyme Carditis.[6] 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 these patients developed the bulls-eye rash. We have to ask the question, “How many seemingly healthy Lyme patients have donated blood?” (Our blood supply is not screened for Lyme disease)

7. The petition calling for a congressional investigation into the deliberate mishandling of Lyme disease[7] has collected 506 pages of heart wrenching comments from supporters around the globe who report total disability, death and suicide from Dr Wormser’s “nuisance” disease. (30,000 signatures growing worldwide)

So once again we see Wormser attempting to pull the wool over on everyone to support his career long bias against persistent infection. It would appear that the peer review process at Clinical Infectious Diseases provides a safe haven for his “Junk Science.”

There is evidence to suggest that the rush to create a vaccine for Lyme led to the mishandling of the disease. The Principle Investigators of the two previous Lyme vaccines: Allen C. Steere for SmithKlineBeecham’s LymeRix and Gary Wormser for Connaught’s vaccine (which never made it to market) have conceptualized a disease that would enable vaccine development. The one-size-fits-all Lyme treatment guideline (lead author: Gary Wormser) matches the conceptualized disease. This is a flagrant conflict of interest. Post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure.

Respectfully submitted,

Carl Tuttle
Hudson, NH

“When “evidence based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science?”

Cc: Rosalie Greenberg, MD, Editorial Directors of Oxford University Press, Nadelman and Wormser, Senators Blumenthal, Ayotte, Hannon, Bonciac, Sarino, Congressman Chris Gibson, Public Citizen, Retraction Watch

REFERENCES


[1] 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

[4] Averil Lavine: Averil Lavigne Opens Up About Her Health Crisis: ‘I Was Bedridden for 5 Months’
http://www.people.com/article/avril-lavigne-lyme-disease-bedridden

[5] Yolanda Foster: Yolanda Foster on Lyme Disease: I’ve Lost Ability to Read, Write, Watch TV
http://www.usmagazine.com/celebrity-news/news/yolanda-foster-on-lyme-disease-ive-lost-ability-to-read-write-201519

[6] 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

Letter to Mary Jo M Dales – Editor IMNG Medical Media

Mary Jo M. Dales

Editor in Chief

IMNG Medical Media

Dear Mary Jo,

In Evidence-based medicine, (EBM) medical treatment remains subject to patient values so why do the CDC and IDSA refuse to listen to the patient voice concerning Lyme disease?; to intentionally avoid the “inconvenient truths”.

The following “inconvenient truths” are heard at Lyme disease support group meetings:

1. The vast majority of patients do not develop the bulls-eye rash.

2. The two stage testing (Elisa followed by Western blot) recommended by the CDC and IDSA is not working. Most patients are negative by Elisa but positive on Western blot.

3. Patients are often ping ponged through the medical community for years before obtaining a diagnosis due to the insufficiently educated (confused) medical community regarding the diagnosis of Lyme disease.

4. Short term treatment of antibiotics as recommended by the IDSA does not address the late stage Lyme patient and is less than adequate for the acute stage.

5. Lyme patients are misdiagnosed with the chronic diseases of our time; Multiple Sclerosis, Lupus, Lou Gehrig’s, disease, Parkinson’s, Alzheimer’s disease, Chronic Fatigue Syndrome and Fibromyalgia.

6. Lyme patients are never informed of the two standards of care for treating the disease; IDSA vs. ILADS.

Deliberately avoiding the inconvenient truths has been an effective campaign to mislead a medical community and the public but Senator Blumenthal believes Lyme patients should have a voice and is currently collecting testimonies from across America. Ignore patient complaints and you can deny the late stage Lyme epidemic indefinitely.

When obtaining medical advice for Lyme disease be sure to ask the question, “Have you ever treated the late stage Lyme patient?

Regards,

Carl Tuttle