World Wide Lyme Rally & Protest
Friday, May 10, 2013
New York City
“Chronic Lyme disease does not exist”.
There are four possibilities to explain why a person might hold
1.They can be ‘dumb as bags of rocks’.
2. They can be character-disordered, with excessively rigid
thinking, and perfect, impenetrable circular logic.
3. They can be corrupt.
4. 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
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
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
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
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
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
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 Molloy 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 Dr.
Charles Ray Jones at the stake. Bring this travesty of justice to
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
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
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
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
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
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
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 Molloy 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
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
Thank you for your attention.
Kenneth B. Liegner, M.D.