Madison Area Lyme Support Group

Remember Vicki Logan

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/19628804?utm_medium=email&utm_source=40201&utm_campaign=petition_update&sfmc_tk=Ht7E61Sjt1EPcm3kmzT7Wf6g%2fWQ%2f%2fIhLJ8dW860dc5XjqRzji6KD7UpW0F9H%2fOkI

If you are keeping track of Carl Tuttle’s petitions, you are aware of his recent post about Vicki Logan, a long-time sufferer of Tick Born Illness who finally succumbed in 2002.  The link above contains the seven page autopsy results after her insurer refused additional IV antibiotic therapy for Lyme Disease.

This is not the first time I read about Vicki and what follows is why her story should be a rallying cry to every MSIDS patient, doctor, and advocate.

I read her story in doctor Kenneth Liegner’s book, In the Crucible of Chronic Lyme Disease.  Liegner’s book is a collection of writings and actual records he filed with various agencies relating to the paper trail involved for doctors fighting for patients with chronic Lyme.  It also contains patient records, power points, letters to the editor, pictures of biopsies, and grueling, heart-felt narratives.  

The book contains copious volumes of letters written on Vicki’s behalf – just short of begging for continual treatment for an obviously very ill woman who suffered grand mal seizures and a myocardial infarction.  Her brain tissue showed cerebral vasculitis with prominent plasma cells which is a clue to the presence of spirochetes as seen in syphilis and Lyme.

Vasculitis is also common in Bartonella:

https://madisonarealymesupportgroup.com/2017/02/16/gardasil-vasculitis-msids/

https://madisonarealymesupportgroup.com/2017/02/15/persistent-b-henselae-in-child/

For more information on Vicki’s case, Pam Weintraub’s book Cure Unknown contains the circumstances leading up to her death.

I heard Liegner recently at a Lyme Continuing Education Seminar in St. Paul.  A humble, quiet man, he turns to music to relieve stress.

In his book Leigner addresses the oft quoted dogma that Chronic Lyme disease does not exist by surmising that these folks are either dumb, character-disordered, corrupt, sociopaths, and/or terrible doctors.

He also points out some “inconvenient truths”  about the business model of managed care and the fact that chronic diseases interfere with predictable outcomes.

Liegner states that Raymond J. Dattwyler and Allan C Steere, both signatories to the 2006 Lyme disease guidelines which assert that chronic Lyme disease does not exist state exactly the opposite in patents, published scientific articles, and private letters. 

Interestingly, it was Dattwyler who was expert consultant to Empire Blue Cross Blue Shield against Vicki Logan’s lawsuit which sought coverage for chronic Lyme.

Oops, that wasn’t disclosed in the published IDSA 2006 guidelines….

The book is power packed with these sorts of facts including details about a 2001 International Lyme Conference in New York where attendees were censored by having their microphones shut off whenever they brought up the issue of chronic Lyme disease.  Wormser denied to Liegner that the event was CDC sponsored, which is an important detail as it possibly could have been opened up by legislators; however, distributed materials showed the event was in fact CDC-sponsored.

I’d turn to music too…..primitive music that requires beating things.

But the real zinger occurred when Liegner requested an autopsy on Vicki and the pathologist not only refused, he refused to even let an outside pathologist use the facilities to perform it.  

The reason?  Wait for it…..

……danger of infection to himself and his staff.

I thought Lyme disease was benign and similar to the common cold – easily cured with 21 days of doxy?

By now you know that Liegner wasn’t about to let the ball drop and found a way to get Vicki to the Chief of Neuropathology at Columbia Presbyterian where her autopsy results are now available to all.  Without this critical step, propelled by Liegner, the pathologist at Hudson Valley Hospital would have successfully prevented medical knowledge of chronic and neurologic Lyme disease as well as the cause of her hypotension, a missed diagnosis of myocardial infarction.

In the 1800’s, Texans had the battle cry, “Remember the Alamo.”

For Lyme patients, advocates, and the doctors who dare to treat them, we have a battle cry too:

“Remember Vicki Logan.”

Interview with Dr. Liegner by Lyme Connection:

http://lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/dr-kenneth-liegner-in-the-crucible-of-chronic-lyme-disease

Synopsis of Book:

http://www.prohealth.com/library/showarticle.cfm?libid=28845

Petition Update: False & Misleading Information about Lyme Disease

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/19604951?utm_medium=email&utm_source=39011&utm_campaign=petition_update&sfmc_tk=W81X%2fT8Okv6pl1J9jTpXM5tRbAmf3uTkPVskOOIYQYufq3eQqrKAmm8ZX4BHfzW6

If you have not signed the petition yet, please go to link above and be counted.  

PETITION UPDATE

False and Misleading Information about Lyme Disease (Propaganda)

Carl Tuttle
Hudson, NH
MAR 5, 2017 — Once again we see more propaganda blindly published in The American Journal of Medicine denying Lyme as a life-altering/life-threatening infection while promoting an outdated simplistic viewpoint of a disease capable of ruining lives.

Collusion: Secret agreement or cooperation for an illegal or dishonest purpose.

Letter to The American Journal of Medicine:

From: “Carl Tuttle”
To: jalpert@email.arizona.edu
Cc: complaints@scipub.org, editors@amjmed.org, jdalen@email.arizona.edu, hellmann@jhmi.edu, kraftm@email.arizona.edu, cwiener@jhmi.edu, schipkin@kin.umass.edu, aamin@lifespan.org, “Arti Shukla” , chibun-chan@ouhsc.edu, drbanik@umn.edu, enicklet@umich.edu, E-Booms@NEIU.edu, jxu@nmsu.edu, “lei sun” , “Myunghan Choi” , xi@health.southalabama.edu, “d w wilson” , “v thijssen” , jiannjou@csmu.edu.tw, pablocotosegura@gmail.com, “bulls threepeat” , stanta@icgeb.org, “paolo ascierto” , giannouk@med.uth.gr, “utz krug” , massoudtoussi@gmail.com, spss2005@126.com, orsinimarco@hotmail.com, “a raikos” , executivedir@aldf.com, gwormser@nymc.edu, “eugene shapiro” , “sten vermund”
Sent: Saturday, March 4, 2017 3:23:49 PM
Subject: False and Misleading Information about Lyme Disease

False and Misleading Information about Lyme Disease
Eugene D. Shapiro, M.D., Phillip J. Baker, Ph.D., Executive Director, Gary P.
Wormser, M.
http://www.amjmed.com/article/S0002-9343(17)30138-9/pdf

March 4, 2017

The American Journal of Medicine
3615 N. Prince Village Place, Suite 181
Tucson, Arizona 85719
Attn: Editorial Board

To the Editors of The American Journal of Medicine,

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]. The last time we recognized a disease with this potential to cause serious harm, (Zika) the CDC wanted 1.8 billion for research. [14]

The authors of this manuscript have compared Lyme disease to the aches and pains of daily living. There are no Public Service Announcements informing the general public that you could become horribly disabled from Lyme disease.

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/

In regards to laboratory testing, please see the following quote from Dr. Kenneth Liegner:

“In 1991 the Lyme disease organism, Borrelia burgdorferi, was grown from the cerebrospinal fluid of my patient Vicki Logan at the Centers for Disease Control in Fort Collins, Colorado despite prior treatment with intravenous antibiotics. Her case made the front page of the New York Times Science Times in August of 1993.” -Kenneth Liegner, MD

Source: http://cognitiveliberty.net/wp-content/uploads/2014/12/David-Dennis.pdf

Vicki Logan’s CDC Fort Collins Positive CSF Culture Report: (My personal Dropbox account)
https://www.dropbox.com/s/vthfdpn7gv8bne2/Logan%20CDC%20Fort%20Collins%20Positive%20CSF%20%20Culture%20Report.JPG?dl=0

What we are dealing with here is an antibiotic resistant/tolerant superbug but the focus over the past three decades (as seen once again in the Shapiro article) has been to discredit the sick and disabled along with the practitioners attempting to help these patients as opposed to finding new antimicrobials effective in eradicating all forms of the Borrelia spirochete; L-forms, round bodies and persister cells. [15]

Shapiro and colleagues claim that: “Lyme disease patients who have been infected by B. burgdorferi for many weeks or months are almost invariably seropositive by 2-tier tests.”

Please see the following letter (And attachments) addressed to the World Health Organization regarding faulty/misleading antibody tests for Lyme disease.

11th email to the World Health Organization:
________________________________________
From: “Carl Tuttle”
To: smithi@who.int
Cc: briands@who.int, engelsd@who.int, renm@who.int, aylwardb@who.int
Sent: Monday, August 1, 2016 10:35:18 AM
Subject: Dr. Sam Donta’s Clinical Notes

August 1, 2016

World Health Organization
Avenue Appia 20
1211 Geneva 27
Switzerland
Attn: Ian Smith MD, Executive Director of the Director-General’s Office

Dear Dr. Smith,

Dr. Sam Donta spent a career studying Lyme disease as a professor of medicine and Director of the Boston University Medical Campus Lyme Disease Center. I have attached a copy of his clinical notes in reference to my personal case of Lyme disease.

I would like to call attention to the Western blot lab results reported in his clinical notes. Positive results here in the United States require specific bands; two out of three IgM and five of ten IgG.

In contrast, China’s Western blot requires a single band (Band 41) for positive results:

A Study of the Technique of Western Blot for Diagnosis of Lyme Disease caused by Borrelia afzelii in China*

2013 Mar;26(3):190-200. doi: 10.3967/0895-3988.2013.03.006.
http://www.ncbi.nlm.nih.gov/pubmed/23425802

Band 41 as you know represents the antibody against the spirochete’s flagella. There are other spirochetal infections that might produce a positive response to band 41; Syphilis (Treponema pallidum) and periodontal pathogen spirochetes (Treponema denticola). These “other” spirochetes can be easily ruled out if there is a question of false positive Lyme results.

Dr. Donta has seen all family members in our household as we were all horribly sick living in this Lyme endemic region of New England. None of us tested positive for Lyme disease following the CDC’s strict criteria for positive lab test results. I have attached a copy of my wife’s Western blot for your review.

Western blot: https://www.dropbox.com/s/ppus0unm0j2oiff/Western%20Blot.pdf?dl=0

My wife by the way could barely walk up a flight of stairs without excruciating knee pain and we thought she might require knee replacement surgery. I’m happy to report that my wife’s knee pain has resolved completely after long term antibiotics of three year’s duration.

The point I would like to convey here is that had we not seen Dr. Donta, none of us would have been treated. This is not an isolated example! Thousands upon thousands of suffering Lyme patients are told they do not have Lyme disease and are not treated as a result of the strict testing criteria.

In addition to the strict test criteria, bands 31 and 34 were removed from the Western blot to facilitate vaccine development. Bands 31 (Outer surface protein A) and 34 (Outer surface protein B) are highly specific to Borrelia so a positive result to either of these two bands confirms infection yet the two most important indicators of infection are no longer offered through standard commercial tests.

The human Lyme vaccine was a failure while the two most significant Western blot bands have not been restored.

Int J Risk Saf Med. 2011;23(2):89-96. doi: 10.3233/JRS-2011-0527.
Neurological complications of vaccination with outer surface protein A (OspA).
Marks DH1. http://www.ncbi.nlm.nih.gov/pubmed/21673416

Dr. David Volkman (Lyme researcher) wrote a letter to Dr. Tom Frieden, Director of the CDC asking that the strict criteria for positive results be reevaluated. I have attached a copy of Dr. Volkman’s letter to this email. Dr. Volkman did not receive a response from the CDC.

Dr Volkman’s letter: https://www.dropbox.com/s/sl5x3gzguowpj6n/Volkman%20letter%20to%20Frieden.doc?dl=0

“One way to stop an epidemic is to redefine it by narrowing the disease’s diagnostic criteria so tightly that it’s hard for any chronically ill Lyme patient to fit the profile and obtain insurance reimbursement.”

Dr Smith, I ask the following questions, “How long do we continue to turn a blind eye to the mishandling of Lyme disease here in the United States? Does the World Health Organization have any authority in questioning what has been wrongly established?”

A response to this inquiry is requested.

Sincerely,

Carl Tuttle
Hudson, NH

Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker and Lorraine Johnson
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879353/

_________________

In summary: Lyme disease belongs in the same health threat category as AIDS, Zika and Ebloa but a handful of academics have controlled the narrative for the past three decades through editorial censorship and colluded to deny this life-altering/life-threatening infection by promoting an outdated simplistic viewpoint of a disease capable of ruining lives.

We are experiencing a runaway plague with unacceptable testing, inadequate treatment, lack of medical training and absolutely no disease control.

Those who have perpetuated this thirty year dogma (along with the editors who publish their propaganda) are responsible for the most shameful affair in the history of medicine. The mishandling of Lyme disease is a crime against humanity on a global scale.

Sincerely,

Carl Tuttle
Hudson, NH

REFERENCES:

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’http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/
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.”

14. $1.8 billion to fight Zika: CDC moves to highest alert level
https://www.washingtonpost.com/news/post-politics/wp/2016/02/08/obama-to-ask-congress-for-1-8-billion-to-combat-zika-virus/

15. LYME SCI: Why persister cells matter with Lyme disease
https://www.lymedisease.org/lyme-sci-why-persister-cells-matter-with-lyme-disease/
LYMEPOLICYWONK: More on Who’s Who and What’s What – NIH Dr. Phil Baker Responds to Blog on American Lyme Disease Foundation | LymeDisease.org
LYMEPOLICYWONK: More on Who’s Who and What’s What – NIH Dr. Phil Baker Responds to Blog on American Lyme Disease Foundation | LymeDisease.org
Last week, I posted a blog regarding the IDSA stealth front organization, the American Lyme Disease Foundation (ALDF). I…
https://www.lymedisease.org