A DOCTOR SPEAKS OUT ABOUT LYME DISEASE CORRUPTION

Remarks:

World Wide Lyme Rally & Protest

Friday, May 10, 2013

Union Square

New York City

“Chronic Lyme disease does not exist”.

There are four possibilities to explain why a person might hold 

this view:

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 

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 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 

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 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 

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.