NYC Worldwide Lyme Rally Video

Thank you to the NYC Worldwide Lyme Rally Volunteers from Vanessa Holden

I’m really honoured to have had the opportunity to work with Lisa Hilton (US Coordinator, Worldwide 

 Lyme Disease Awareness Rally (Protest) ) and Charlotte Björnström (Worldwide Coordinator, Worldwide Lyme Disease Awareness Protest). A special thank you to  Rachelle R Holden, Dr. Kenneth B. Liegner, and Jill Auerbach – I don’t know how I could have done it without all your help and support!

Photo by Chrysa Pikramenos-mylyme.org

Thanks to all of you for making the NYC Worldwide Lyme Disease Awareness Rally a success. And to all those who attended the rally, thanks for being a part of this very special day. I hope it will be the start of many positive changes for the Lyme community.

Vanessa F . Holden – NYC Coordinator

Worldwide Lyme Disease Awareness Rally -  May 10, 2013

Video:

Peter Lee, Swallowtail Studios

Sound:

Chuck Acquisto

Matt Susskind

Carolyn Fox

Photo stills:

Chrysa Pikramenos

Katherine Kornblau-Susskind

Carolyn Fox

                                                                                                                   

                                                                                   

Kenneth B. Liegner, MD - Facilitator

Speakers: 

Daniel J. Cameron, MD

Eva Sapi, PhD

Gerald T. Simons, PA-C

Charles Ray Jones, MD 

Tracy Hans, LPC, ACS, Lyme literate Psychotherapist

Jeff Christensen, 4 - poster deer program

Jill Auerbach, Hudson Valley Lyme Disease Association

Douglas Nadjari, Esq.

Ruskin Moscou Faltischek P.C.

Meghan Harrison, recovering Lyme patient

Ariana Sierzputowski, recovering Lyme patient

Andrea Gaito, MD 

Kenneth B. Liegner, MD

Pam Weintraub, author “Cure Unknown”

Support:

International Lyme And Associated Diseases Society (ILADS)

Tick-Borne Disease Alliance (TBDA)

Lyme Research Alliance (LRA)

Lyme Disease Association (LDA)

Lymedisease.org 

National Capital Lyme & Tick-Borne Disease Association (NatCapLyme)

Lyme Disease United Coalition (LDUC)

AftertheBite

IGeneX, Inc. Reference Laboratory

Clongen Laboratories, LLC

Alyssa giving Vanessa cupcakes for her birthday.

Long Island Lyme Association (LILA)

Empire State Lyme Disease Association, Inc.

Hudson Valley Lyme Disease Association

Mid-Hudson Lyme Disease Support Group

New York City Lyme Disease Support Group

New Brunswick Lyme Disease Support Group

Lymenet.org

Meriden Lyme Group

Children’s Lyme Disease Network (CLDN)

South East Pennsylvania Lyme Disease Association

Congressman Chris Gibson

Steve Bulger

Volunteers

Robin Ormsby

Karen Gaudian

Jeannine Der Bedrosian

Eva Haughie

Ellen Lubarsky

Pascal Prince

Ross Fredella

Diane Levenson

Eliot Katz

Donna Baez Brunner

Carol Inamdar

Jess Thomson

Curtis Campaigne

Dr Jones and his daughter

Norma Russo

Idith Korman

Alyssa Alexander

Doug Kahn

Wendy Weil

Stephanie Rogers

Marija Beqaj

Tamara Balsamides

Judith Leventhal

Sheila Statlender

Sharon Fisher

Sue Ferrara

TinCup

Naomi Joy

Healthcare Now

And any other volunteers I may have inadvertently left out

  

NYPD: Officer Dorrian, Officer Mulroney

New York City Department of Parks and Recreation:

Elliott Sykes, Parks Manager

Claudia Pepe, Special Events

Marissa Birmingham, Supervisor

Dr Liegner's Letter to the Institute of Medicine

Click here to view document
https://docs.google.com/document/d/1Lje56cmlqfcK7XhNdI2GWvQ199l4NceBkA41YAUOWcA/edit?usp=sharing


Kenneth B. Liegner, M.D., P.C.                     
& Associates
Internal & Critical Care Medicine
Lyme Borreliosis & Related Disorders
592 Route 22 – Suite 1B
Pawling, New York 12564
Ph: 845 493-0274
 FAX: 845 493-0279
September 14, 2010



Lonnie King
Trevonne Walford
Christine M. Coussens
Members of the IOM Committee Panel for
“Lyme Disease & Other Tick-borne 
Diseases: State of the Science”
Institute of Medicine of 
The National Academy of Sciences
Keck Center
500 Fifth St. NW
Washington, DC 20001

Dear Lonnie King, Christine Coussens, Trevonne Walford and Panel Members:


I spoke with Trevonne a few days back to inquire whether or not there would be opportunity for attendees of the up-coming meeting to make comments and/or statements in the context of the meeting and learned that the meeting was structured only to allow focused questions in response to a preceding presentation or discussion.

I mentioned in passing that I was pleased to see that there was representation of a diversity of views in terms of choice of speakers which included Carl Brenner, John Aucott, Brian Fallon, Sam Donta and Pam Weintraub.

It has since been pointed out to me that many of these individuals have very limited time in which to articulate a position concerning the issue of chronic Lyme disease since the physicians are ensconced within discussion panels and do not have the opportunity to speak at length.

The process of planning the meeting has been, as far as I can tell, quite opaque and it is notable that clinicians who actually treat persons with chronic Lyme disease have been nowhere to be found on either the planning committee or the panel.  Neither is any clinician afforded adequate time to present, in a formal way, an opposing position to what must be viewed as the “keynote” speech by Dr. Wormser.  Dr. Wormser’s extreme view on the existence of the entity of chronic Lyme disease needs no repeating but does need rebuttal.

Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined.  Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized.  To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field.  Laboratories that test extensively for Lyme disease, including use of direct detection methods such as PCR, have found themselves subjected to concerted smear campaigns and harassed.  Whereas PCR is a well-accepted method in virtually all other infectious diseases, its clinical use for Lyme disease has also been marginalized.  Direct detection methods developed more than a decade ago by some of this country’s finest physician-researchers and biomedical research scientists (Dorward DW, Schwan TG, Garon CF. Immmune Capture and Detection of Borrelia burgdorferi Antigens in Urine, Blood, or Tissues from Infected Ticks, Mice, Dogs, and Humans. J Clin Microbiol 1991;29:1162-1170 &   Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J, Krupp L, Luft B. Detection of Borrelia burgdorferi antigens in cerebrospinal fluid. Neurology 1993;43:1093-1097 & Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft BJ. Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010-5) have been moth-balled, I believe, for political and medical socioeconomic reasons.

Seronegativity, a well-recognized feature of spirochetal disease (e.g. in syphilis) is held to not need consideration despite early recognition of this phenomenon in Lyme disease, ironically, by a signer of the 2000 and 2006 IDSA Lyme disease guidelines (Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG. Seronegative Lyme Disease. Dissociation of T- and B-Lymphocyte Responses to Borrelia burgdorferi. N Engl. J Med 1988;319:1441-6).

That there is no active support by the Federal government for training programs for pathologists or support for pathologic laboratories for in-depth pathologic study of tissues from humans with chronic Lyme disease using all available methods (and which, hopefully, might develop new and superior methods) indicates a choice to remain in ignorance.  There could and there should be one or more such laboratories of highest scientific calibre where such methods could be made available to clinicians and researchers and their patients, comparable to the Armed Forces Institute of Pathology, which has been known for excellence in the study of syphilis.

A key formative influence in the creation of the National Institutes of Health was Metropolitan Life Insurance Company (Harden VA. Inventing the NIH. Federal Biomedical Research Policy 1887-1937.Johns Hopkins University Press. 1986. pp.57-59,114 & 122).  It would be naïve not to consider the possibility of ongoing behind the scenes influence of the insurance industry on N.I.H. policy.

Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease in humans and animals.  Much of this evidence was presented to the Lyme Disease Review Panel of the Infectious Diseases Society of America on July 30, 2009.  Regrettably, the panel chose to sustain the 2006 IDSA Lyme Disease Guidelines.  IDSA leaders were defiant from the outset asserting the Connecticut Attorney General could make them review the guidelines but that he couldn’t make them change them.  In retrospect it was a serious strategic error to leave the review process within the hands and ultimately under the control of the IDSA itself.

The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.  However, such guidelines are indeed useful.  They serve to shield from liability physicians who neglect persons with chronic Lyme disease.  By misusing CDC case surveillance criteria as the sole basis for a clinical diagnosis of Lyme disease, these guidelines serve the insurance industry very well indeed because such cases represent but the tip of the iceberg of actual cases of Lyme disease, whether acute or chronic.  Denial of the possibility of seronegative Lyme disease, likewise serves the insurance industry well and also such simplistic constructs for Lyme disease also serve those physicians who cannot wrap their minds around the true complexity of this illness.

The medical profession and the United States Public Health Service, predecessor to the CDC, have a long history of medical neglect of persons suffering from spirochetal infection.  The profession and the USPHS were completely unable to reform themselves from within in this regard.
It required moral and political intervention from without to bring the Tuskegee Experiment to an end with Senator Edward Kennedy’s hearings in February and March, 1973 before Committee of Labor and Public Welfare’s Sub-Committee on Health (Jones JH. Bad Blood: the Tuskegee Syphilis Experiment – a tragedy of race and medicine. The Free Press. New York. 1981 pp. 213).

The Tuskegee Experiment involved about 400 subjects.  Lacking the taint of racism, nonetheless the “mainstream” handling of chronic Lyme disease affects far more people; it would be a fair estimate to say, Tuskegee X 10,000 in the United States alone.  Furthermore, the standards held out by the CDC and the IDSA have worldwide influence.  Canadians are unable to get care for chronic Lyme disease.  We are seeing significant numbers of persons with chronic Lyme disease forced to leave Canada for care.

State legislators have begun taking matters into their own hands and the states of Rhode Island, Connecticut, California, New York, Massachusetts and Minnesota have passed laws or promulgated policies protecting physicians who treat persons with chronic Lyme disease.  Are these legislators stupid?  Are they dupes of Lyme activists?  Or can they see what is so obvious to the patients and to any good clinician, that Lyme disease can be a chronic infection that often requires a long-term treatment approach?  Furthermore, as the disease spreads and more and more individuals are affected, legislator’s staffers, their wives, their children and they themselves are experiencing the effects of chronic Lyme disease.

In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.

This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.

I am forwarding by mail copies of two of my abstracts and several published articles concerning such individuals for each panel member as I do not have these in PDF format (Liegner KB, Rosenkilde CE, Campbell GL, Quan TJ, Dennis DT. Culture-confirmed treatment failure of cefotaxime and minocycline in a case of Lyme meningoencephalomyelitis in the United States [abstract].  Programs and abstracts of the Fifth International Conference on Lyme Borreliosis, Arlington, VA, May 30-June 2, 1992. Bethesda,MD: Federation of American Societies for Experimental Biology; 1992:A11.
&  Liegner KB, Duray P, Agricola M, Rosenkilde C, Yannuzzi L, Ziska M, Tilton R, Hulinska D, Hubbard J, Fallon B. Lyme Disease and the Clinical Spectrum of Antibiotic-Responsive Chronic Meningoencephalomyelitides. J Spirochetal and Tick-borne Dis 1997;4:61-73  &  Liegner KB. Lyme Disease: The Sensible Pursuit of Answers. (Guest Commentary). J Clin Microbiol 1993;31:1961-1963 &  Liegner KB & Jones CR.  Fatal progressive encephalitis following an untreated deer tick attachment in a 7 year-old Fairfield County, Connecticut child. [Abstract] VIII International Conference on Lyme Disease and other Emerging Tick-borne Diseases, Munich, Germany, June 1999 &  Liegner KB, Shapiro JR, Ramsay D, Halperin AJ, Hogrefe W, Kong L. Recurrent Erythema Migrans Despite Extended Antibiotic Treatment with Minocycline in a Patient with Persisting B. burgdorferi Infection. J Amer Acad Derm 1993;28:312-4.).
I urge the panel members to be scrupulous in considering all of the available evidence concerning the issue of chronic Lyme disease, to issue a report which will not be regarded as a whitewash for the IDSA 2006 Lyme Disease Guidelines, that the IOM Lyme and Tick-borne Diseases Panel may acquit itself well in the eyes of history.

Very truly yours,


Kenneth B. Liegner, M.D.

Member, Treatment Panel, N.I.H. State-of-the-Art
Conference on Lyme Disease, March 1991, Bethesda, MD.

Co-Chair, Treatment Poster Discussion Section,
Fifth International Conference on Lyme Borreliosis, May/June 1992, Arlington, VA.

Participant, N.I.A.I.D. Consultations on Chronic
Lyme Disease, February & October, 1994, Rockville, MD.

Member, Program Committee, 7th International Conference on Lyme Borreliosis, San Francisco, CA., Spring 1996.

Presenter to Infectious Diseases Society of America
Lyme Disease Review Panel, July 30, 2009, Washington,
D.C.

KBL/ik

Public Health Letter to Dr Liegner

Letters between Dr Jones and Dr Liegner

VIII International Conference on Lyme Borreliosis and other Emerging Tick-Borne Diseases, Munich Germany, June 1999

Lyme Disease: Does it Really Linger?

Click the article below to read.

Major Initiative Needed to Fight Tick-Borne Infections by Dr Kenneth Liegner

  Click Paper to Read Article

Dr Leigner's Speech at the NYC Lyme Rally

Dr Leigner speaking at the NYC Lyme Rally
Photo by Chrysa http://mylyme.org/

World Wide Lyme Rally & Protest

Friday, May 10, 2013

Union Square

New York City

“Chronic Lyme disease does not exist”.

There are at least four possibilities to explain why a person might hold this view:

They can be ‘dumb as bags of rocks’. 

They can be character-disordered, with excessively rigid thinking, and perfect, impenetrable circular logic.

They can be corrupt.

They can be sociopaths.

One thing is for damn sure: they are truly lousy clinicians.

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.

In 2012, the Embers Rhesus monkey study demonstrated conclusively in a primate model closest to man, that Lyme infection can persist despite application of intravenous antibiotics and that animals can be seronegative on antibody studies despite harboring persistent active infection.

Lyme disease is the first infectious disease of truly epidemic proportions that emerged hand in hand with another new phenomenon affecting the health of Americans: the penetration of managed care in to the health care market place.

An infection that can be chronic and require a long-term treatment approach does not fit the ‘business model’ of managed care: predictable premiums, predictable costs, predictable profit.  With managed care it became feasible to control costs by defining away the chronic infectious aspects of Lyme disease. 

The Infectious Diseases Society of America Clinical Practice Guidelines for Lyme Disease which appeared in 2000 and 2006, insist that chronic Lyme disease does not exist.   These guidelines have proven an effective tool for the health insurance industry to justify denial of reimbursement to patients for treatments that their doctors prescribe.

Health plans and insurers and hospitals red flag physicians not conforming to IDSA guidelines for sanctioning and often report them to State Boards of Medical Practice to ‘break their knees’.  This cowardly and despicable ‘modus operandi’ is an assault on physicians’ most prized possession: professional autonomy and independent medical judgment.

 Hospitals, once proud and independent entities with endowments and a tradition of ‘charity care’ have been ‘captured’ by the insurance industry and are now, often, little more than ‘corporate profit centers’.

Health plans do not want thinking, feeling professionals:  they want ‘trained monkeys’ on a ‘commoditized’ health care assembly line, following electronic medical record-prompted ‘algorithms’ designed to maximize corporate profit.  

The Hippocratic Oath has now become a ‘quaint anachronism’ superseded by a new Corporate Medical Ethic.  “He who pays the piper calls the tune”.

IDSA guidelines also serve as a shield for medical neglect, protecting physicians who fail to diagnose or treat (or treat adequately) patients with chronic Lyme disease, who suffer irreversible neurologic injury as a result.

In 2008, Connecticut State Attorney General Richard Blumenthal undertook an investigation of the way in which the 2006 IDSA Lyme guidelines were developed and found significant flaws in the IDSA’s guideline development process and many undisclosed conflicts of interest. 

Attorney General Blumenthal opted to negotiate a settlement with the IDSA with the creation of a Lyme Disease Review Panel to revisit the IDSA guidelines. 

Unfortunately, all panel members were hand-picked by the IDSA and physicians earning more than $10,000/year caring for persons with Lyme disease were excluded from the panel.  As a result no physician who actually cared for persons with chronic Lyme disease served on the Lyme Review Panel. 

In retrospect, a negotiated settlement instead of litigation, was a strategic error because the review was under the complete control of the IDSA.  Consequently, no meaningful changes in the guidelines were recommended.  The fox was guarding the chicken coop!

However, Attorney General Blumenthal’s investigation and the presentations of evidence before the IDSA Lyme Disease Review Panel were of some utility.  When the Institute of Medicine brought forth its monograph on the development of trustworthy practice guidelines, it pointed to the IDSA Lyme Disease guidelines as an example of a guideline development process ‘gone awry’.

Raymond J. Dattwyler, signatory to the 2006 Lyme disease guidelines which assert that chronic Lyme disease does not exist states exactly the opposite in a United States patent that issued almost contemporaneously with the IDSA Guidelines. 

Allen C. Steere, signatory to the 2006 IDSA Lyme Disease Guidelines which declare chronic Lyme disease does not exist, states exactly the opposite in his published scientific articles and private letters.  He sought a correction when his first name was incorrectly listed in the 1993 Logan Science Times article as “Robert’ and advised the Times his opinion had been incompletely reported and requested it be clarified.  According to the Times correction: “he says that the small percentage of patients who have inflammation of the brain despite standard antibiotic treatment do have persistent infection.”

You cannot have it both ways!

When a physician signs on to a practice guideline that directly contradicts their position in their own published peer-reviewed journal articles, statements in the public record, private letters and in their own United States Patents, does that signify medical and scientific misconduct?

Additionally, Dr. Dattwyler served as an expert consultant to Empire Blue Cross Blue Shield in its defense against the Logan lawsuit which sought to compel Empire to cover the cost of treatment for chronic Lyme disease.  This was not disclosed in the published IDSA 2006 Lyme guidelines.

Gary Wormser, lead IDSA Lyme guidelines author, quashed all abstracts on chronic Lyme disease from being accepted at the 2002 International Lyme Conference at the Hyatt Hotel in New York City.  When I asked him if the conference was sponsored by the CDC, he adamantly denied it.  This was important because if it was known to be a CDC-sponsored event it might have been possible for legislators to intervene to open up the process. 

Dr. Wormser either did not know that the event was CDC-sponsored (which seems highly implausible) or he chose to conceal that fact from me.  Materials distributed at the time of the conference showed the event was, in fact, CDC-sponsored.  During the conference, whenever attendees attempted to bring up the issue of chronic Lyme disease, they were censored, and microphones were shut off so their challenges could not be heard.

When a physician acts in a way to suppress expression of opposing views in a government-sponsored international scientific conference, does that constitute an abuse of power?  Does it constitute medical and scientific misconduct?

Honest science does not need to suppress opposing views.

Vicki Logan and other patients sued Empire Blue Cross Blue Shield to cover the cost of needed treatment.  The case was settled out of court with terms that were confidential.  Whatever the settlement was, it did not include Vicki’s right to be reimbursed for the cost of intravenous antibiotic therapy, which she needed.

During the litigation, a deposition under oath was taken by Empire Blue Cross Blue Shield Senior Vice President Richard Sanchez, M.D.  He testified that Empire’s accountants, Deloitte & Touche, advised Empire that their review physicians needed to issue more denials in order to increase its profitability.  Empire was transitioning from a not for profit to a for profit entity.  They raised the bar to make it more difficult for patients with costly conditions, such as Lyme disease, to get reimbursement for treatment.  His testimony indicated that Empire senior personnel knew that some patients who actually had Lyme disease would be denied treatment and that some would suffer as a result.  He said it was ‘rationalized’ that patients could appeal their denials and that that was a way that Empire physicians could ‘sleep at night’.   But he also acknowledged that some patients might be unable to negotiate the tortuous appeals process and might ‘fall by the wayside’ and might sustain irreversible injury as a result. 

Empire Blue Cross & Blue Shield ultimately did transition to a ‘for profit’ entity.  Empire executives got ‘golden parachutes’ worth hundreds of millions of dollars in personal profit.  Vicki Logan got a ‘handbasket to hell’.

When patients suffer, deteriorate neurologically and die due to corporate decisions, who is responsible?  Is there impunity?  Or is there a penalty?

There’s the case of a 6 year-old Fairfield County, Connecticut child whose mother pleaded with her pediatrician to treat for a fully engorged deer tick attachment on the side of her neck Spring of 1995.  The pediatrician refused.  Flu-like symptoms developed that summer, and headache, stiff neck and swelling of the glands draining the tick bite site developed in the Fall. Personality change, hypersomnolence and later, status epilepticus developed.  Seizures were so severe that pentobarbital coma was required to control them.  She came under the care of Charles Ray Jones, MD, who referred her to me for a spinal tap.  At the time of the tap, Lyme Western blot in serum at Stony Brook showed 4/5 CDC-specific IgG bands, but her ELISA screening test was negative.  Dr. Jones treated her with intravenous antibiotics.  Although she had sustained a degree of irreversible neurologic injury from her illness, she was making good progress on IV antibiotics for several months.  Intracorp’s review physician refused to authorize reimbursement to the family for continuation of intravenous antibiotics even though she was still improving.  After cessation of intravenous antibiotics, intractable status epilepticus recurred, she was admitted to a tertiary care hospital and died within one month.  An autopsy was performed.  Both Dr. Charles Ray Jones and I independently telephoned the health officer charged with Lyme disease epidemiology for the Connecticut Department of Public Health, pleading with him to take the case.  The purpose of our request was not to punish any physician, but to learn from the case.  His response to me was:  “Well…..what evidence was there, really, that this child had Lyme disease?”  and declined to accept the case.

So, you take the one physician in Connecticut who cares for all the children sick with chronic Lyme disease who has never harmed a child, but only helped, and put him through an attempted public crucifixion.   And the court allows pediatrician John Senechal, who expressed vituperative malice towards Dr. Jones, to sit on the Committee determining Dr. Jones’ fate?

But when a physician fails to treat a child with an engorged deer tick bite despite a mother’s plea and fails to recognize  Lyme disease when the child becomes ill including status epilepticus  and the child dies within 30 days of discontinuance of IV antibiotics made necessary by the decision of an insurance company review physician, and two physicians report the case to the Connecticut Department of Public Health, you DON’T investigate?

What is wrong with this picture?

I call on Dr. Jewel Mullen, Commissioner of the Connecticut Department of Public Health, to investigate this case now and determine why there was a failure to investigate it in 1997.

I call on Connecticut Governor Dannel Malloy to direct the Department of Public Health to disclose how many hundreds of thousands of taxpayers’ dollars have been wasted by the Connecticut Medical Examining Board’s attempt to burn at the stake, Dr. Charles Ray Jones.  Bring this travesty of justice to an end!

In 2005 a memorandum of understanding with the New York State Department of Health’s Office of Professional Medical Conduct (OPMC) was reached through the efforts of Assemblymen Joel Miller and Adam Bradley and Assemblywoman Nettie Meyersohn in conjunction with Governor Pataki’s Chief Counsel, not to investigate physicians merely because they held a minority opinion concerning diagnosis and treatment of Lyme disease. 

Recently, in New York State, six physicians who care for persons with chronic Lyme disease have been simultaneously under investigation by the OPMC.  What message does this send to other physicians?  What implications does this have for  persons with chronic Lyme disease to access proper care within the State of New York and elsewhere?

If nothing else, it indicates that a memorandum of understanding is inadequate to protect physicians and the patients with chronic Lyme disease who depend on them for care. 

Force of law is necessary to accomplish this, and to compel insurers to pay for treatment their physicians have determined is medically necessary for this condition. 

Legislation containing some or all of these elements has been passed or is currently under consideration in a number of States.   Insurers can never be trusted to do the right thing for patients with chronic Lyme disease.  Such decisions must be taken out of the hands of the insurance industry. 

Then, there’s the case of Jennifer Lilly.  She sustained a tick bite while in western New Jersey, followed by a classic Bull’s Eye rash, and severe headache.  She was told by a succession of physicians she could not have Lyme disease because her screening tests for Lyme disease were negative and she received no treatment during the first three years of her illness.  When I saw her, I diagnosed Lyme disease based on her history and instituted treatment at her initial visit.  Her Lyme ELISA at SUNY Stony Brook was still negative, but her IgM and IgG Western blots were fully diagnostic.  Most likely because of the delay in her diagnosis, lesions were evident on an MRI of her brain and this formerly highly productive woman has had to seek disability.

When the Frederick County, Maryland Department of Health contacted me to complete a Lyme disease reporting form, I decided to accompany it with a detailed letter which I copied to Dr. Thomas Frieden, former New York City Health Commissioner, and now Director of the Centers for Disease Control, since Jennifer’s case was a glaring example of the deficiencies of the two-tiered system of Lyme disease testing recommended by the CDC and responsible for so much patient suffering.  Dr. Frieden never personally responded to my letter.

Presently we have underway a vast, de facto nation- and world-wide “Tuskegee Experiment” of untreated or under-treated chronic Lyme disease.

Neither the United States Public Health Service, predecessor to the CDC, nor the medical profession brought the Tuskegee Experiment to a halt.  Senator Edward Kennedy’s hearings held in 1972 ended that shameful episode.  Moral  force brought the ignominious Tuskegee Experiment to an end.

In the year 2000, due to fortuitous circumstances, and unbeknownst to Dr. Dattwyler, I gained access to CDC-funded experimental methods in his research laboratory for more than 140 specimens of frozen cerebrospinal fluid on my patients.  Whereas only 2% of specimens tested positive on standard spinal fluid tests, some 62 % of specimens tested positive on one or more of the four experimental assays used.  Ironically, Vicki Logan’s CSF tested more than 7 times higher than the positive cut-off for detection of Outer surface protein C antigen, in the very laboratory of Empire Blue Cross & Blue Shield’s own expert consultant.

I asked Laboratory Supervisor, Priscilla Munoz, how they knew these methods were valid.  She replied that the three collaborating research laboratories shared aliquots of samples and found excellent reproducibility between the three labs.

The results of these CDC-funded studies on direct detection of OspA and OspC antigen and IgG and IgM borrelia-specific immune complexes in spinal fluid have never been published.

Why not?  Did someone at CDC “deep six” the results of this research project?  If so, who made this decision, and why?

I demand the “raw data” from these CDC-funded research studies, which have never seen the light of day, be made public immediately.

Thomas Frieden, as Director of CDC can ‘set the tone’ for the agency.   I call on him, to ‘step up to the plate’ and fix the mess created by CDC.  Dr. Frieden can ‘redeem’ the reputation of  CDC, which is composed of fine physicians and scientists.  Dissociate CDC from the disgraced IDSA Lyme disease guidelines.  Otherwise, step down!

I call on NYS Attorney General Eric Schneiderman to undertake an additional, independent, in depth and far reaching investigation with subpoena power and testimony under oath, of the 2006 IDSA Lyme Disease Guidelines and of the health  insurance industry, in order to determine whether or not, in the matter of chronic and seronegative Lyme disease, there has been collusion to perpetrate a premeditated, systematic and pervasive health care fraud upon the citizens of New York State he has a sworn duty to protect.   

Has anyone here been shafted by MEDCO???  Investigate MEDCO!!!  When there exist two schools of thought, you endorse only that school of thought that maximizes short term profit, regardless of individual patient circumstances or the suffering that it causes?

Remember A.I.D.S.?  Persons with H.I.V. were abused, despised and neglected until ACT-UP-activists threw blood on the steps of St. Patrick’s Cathedral.

Only then did things begin to change. Because of that activism, $2 billion/year has been expended on A.I.D.S. research and treatment over the past several decades and real progress has been made. 

Contrast that with some $20 million/year spent on Lyme disease by the Federal government.  Why are resources commensurate with the threat posed by Lyme disease not being allocated? Start funding to the tune of

$2 billion /year for Lyme and tick-borne diseases and, trust me, you’ll see progress!

 

Federal funds should not be squandered further on those who are ideologically committed to the false proposition that chronic Lyme disease does not exist.

Paul Starr, who graduated Columbia College a year ahead of me, correctly predicted the ‘coming of the corporation’ in his prescient book “The Social Transformation of American Medicine”.  

 But Starr also commented that the future of American Medicine is ours to shape by the choices that we make.

Patients have the Power.  But, they must be united and not squabbling with one another.  They must be pro-active, militant and resolute. 

There are lots of things patients can do.  They can write to their State Assemblypersons and State Senators.  They can MEET with their State Assemblypersons and State Senators.  They can do the same with their U.S. Congress-persons & Senators

& their states’ Governors. 

They can write to Connecticut Governor Malloy and tell him to

“call off the dogs”!

They can write to Attorney General Schneiderman with details of their cases and how they have been mistreated by insurers girded by IDSA guidelines that are scientifically, therapeutically and morally bankrupt and which endorse  and enable medical neglect as a ‘standard of care’ for persons with chronic Lyme disease. 

They can write to Governor Cuomo, President Obama and First Lady Michelle Obama, persons of conscience and compassion, urging them to act.

Sometimes, a little ‘rebellion’ is necessary.

Thank you for your attention.

Kenneth B. Liegner, M.D.  

Pictures from the NYC Worldwide Lyme Rally

State Coordinator: Vanessa Holden

Email: vfholden@vfholden.com

When: Fri, May 10, 12-4 pm

Where: Union Sq, NYC

Join Our Facebook New York Planning Page

Speakers:

Here's our exciting speaker schedule for the NYC Worldwide Lyme Disease Awareness Rally on Fri. May 10, 2013!!!!!! Hope you'll join us. thanks. please like and share....

Worldwide Lyme Disease Awareness Rally – May 10, 2013, NYC, Union Square, South Plaza: 12-4 pm

Programme:

12:00 Musical lead-in

12:30 Dr. Daniel J. Cameron – NY (past president ILADS, president 2013), Lyme and epidemiologic research

12:45 Dr. Eva Sapi – CT, University of New Haven, Dept of Biology and Environmental Science

1:00 Gerald T. Simons – NY, PA-C, works at the Morrison Center, NYC.

1:15 Dr. Charles Ray Jones – CT (ILADS, pediatrician who has treated 20,000 children in Europe, Australia, US, Canada, Mexico, S Africa, Pakistan, India, Singapore, China, Japan, N. Korea, S. Korea, Saudi Arabia etc.

1:30 Tracy Hans – NJ, LPC, ACS, Lyme literate Psychotherapist

1:45 Jeff Christiansen – NY, Fire Island four poster deer program

2:00 Jill Auerbach – NY, Hudson Valley Lyme Disease Association – tick prevention

2:15 Douglas Nadjari, Esq. – NY, who successfully counseled Dr. Liegner through the OPMC process

2:30 Meghan Harrison – PA, Lyme patient, recipient of TBDA Courage Award, 2013

2:45 Ariana Sierzputowski – NY, Lyme patient

3:00 Dr. Andrea Gaito – NJ (co-founder and former president ILADS, current Treasurer, ILADS) rheumatologist/internist

3:15 Dr. Kenneth B. Liegner – NY, internal medicine/critical care, treating Lyme since 1988

3:45 Musical finale

Pam Weintraub – NY, author “Cure Unknown” - book signin

Worldwide Mission Statement

Worldwide Patients are raising awareness and protesting to highlight the need for:

1. Recognition that Lyme disease/borreliosis, and other tick-borne infections, such as Babesia, Bartonella, Rickettsia, Ehrlichia, are serious, and sometimes fatal illnesses. 

2. Awareness of the fact that the transmission of tick-borne pathogens, such as borrelia, babesia, rickettsia, via blood transfusion is of global concern.

3. Agreement that Lyme disease/borreliosis should be listed as a notifiable infection. Notifiable status will aid in ensuring that the incidence and spread of this disease are monitored, a necessary precursor to determining the human suffering and socioeconomic impact of the disease.

4. Education of the healthcare sector regarding the accurate diagnosis of Lyme, which in some cases may be limited to clinical presentation due to limitations of serological testing. 

*Education should ensure all doctors are familiar with the CDC caution pertaining to criteria for blood tests for Lyme: “This surveillance case definition was developed for national reporting of Lyme disease; it is NOT appropriate for clinical diagnosis...Surveillance case definitions are created for the purpose of standardization, not patient care.” 

* Education that Lyme should be included as a differential diagnosis when considering other illnesses that are also reliant on subjective clinical presentation, or have no known cause. This includes, but is not limited to: Motor Neurone Disease (MND) also known as Lou Gehrig’s disease or Amyotrophic lateral sclerosis (ALS) ; Multiple Sclerosis ; Alzheimer’s; Parkinson’s disease; Sarcoidosis. 

5. Education of the healthcare sector regarding affordable and effective treatment of both acute and chronic Lyme and other tick-borne infections. This includes the need to update the outdated treatment guidelines of the Infectious Diseases Society of America (IDSA) and to take into account the treatment methods of other Societies such as: The International Lyme and Associated Diseases Society (ILADS) and the German Borreliosis Society (Deutsche Borreliose-Gesellschaft : DBG) 

6. Funding for research into tick-borne diseases. Including: Funding for medical research into accurate Lyme testing and treatment ; Funding for research into vectors and reservoir hosts to determine what diseases they may carry and transmit. 

Vanessa, the NYC Rally state coordinator, gets a birthday surprise!

Dr. Kenneth Liegner speaking at the Union Square Lyme Rally
Photo Credit: Donna Baez Brunner

Photo Credit: University of New Haven Lyme Disease Research Group

Photo Credit: Tracy Hans

Photo Credit: Tracy Hans

Photo Credit: Tracy Hans

Photo Credit: Donna Baez Brunner

Photo Credit: Diane Freiermuth- Martin

Photo Credit: Diane Freiermuth- Martin

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Vanessa's birthday cupcakes!
Photo Credit: Donna Baez Brunner

Dr Jones speaking.
Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Researcher Eva Sapi
Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner

Photo Credit: Donna Baez Brunner 

Photo Credit: Donna Baez Brunner