Monthly Archives: September 2015

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