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Lyme Disease Divide

A Schism Over Treatment Philosophies Puts A Connecticut Pediatrician's
License On The Line

By Gary Santaniello

September 17 2006

The current epicenter of what some call "the Lyme wars" is a warren of
small rooms on the nondescript ground floor of Madison Towers, a
17-story apartment building on Park Street in downtown New Haven.

This is where Dr. Charles Ray Jones, whom some consider the world's
foremost pediatric Lyme disease specialist, practices medicine. A few
blocks away is Yale University School of Medicine, where Lyme disease
was first researched, and where its earliest treatment protocols were
developed in the years after the disease was identified in 1975. It is
also where the current orthodoxy stands in fierce opposition to Jones's
approach to treating the disease.

Sitting at a desk in one of his small examining rooms, Jones doesn't
appear to be a man engulfed by controversy and facing the possible loss
of his license to practice medicine. He is a large man who wears thick
glasses and speaks quietly, deliberately, almost inaudibly.

"I'm not a renegade," he said. "I don't look for trouble. It finds me."

Dr. Eugene Shapiro, a professor of pediatrics and epidemiology at the
medical school, helped write the guidelines to treat Lyme disease that
have been endorsed by the U.S. Centers for Disease Control. Shapiro
said he has received many calls from physicians in Connecticut "begging
me to see their patients so they don't have to see Dr. Jones. It is not
an uncommon call."

Transmitted to humans by the painless bite of the tiny black-legged
deer tick, Lyme disease presents doctors with a host of challenges.
Once the corkscrew-shaped bacterium, called a spirochete, enters the
bloodstream, it can cause a wide range of constitutional,
musculoskeletal and neurological symptoms. Its ability to change forms
often makes it difficult to detect and destroy, and the longer the
symptoms go untreated, the more intractable they become.

The strong belief in the U.S. medical establishment, represented by the
8,000-member Infectious Diseases Society of America, is that the use of
antibiotics on a long-term basis to treat the Lyme bacterium is not
only ineffective, but can be harmful to patients. But a group of about
300 doctors, academics and other health-care professionals adamantly
believes that the establishment is in denial, not only over the
effectiveness of a long-term course of antibiotics, but over the very
existence of chronic Lyme disease. Thus, in effect, there are two
standards of care for Lyme disease, and the onus is on the patient to
be aware of it.

Shapiro and establishment doctors like him say Jones too often
diagnoses Lyme disease where it doesn't exist, by their definition of
the disease. As a result, they say, his use of antibiotics is too
aggressive and much too prolonged. In fact, some of Jones's patients
have been taking the drugs for years. Doctors in the medical
establishment generally believe that most patients who acquire Lyme can
be cured with a single course of antibiotics lasting from 14 to 28
days.

The other camp, led by what its advocates call "Lyme literate" doctors,
believes Lyme is more multifaceted than the mainstream community
insists and, particularly in its late stages, requires more aggressive
antibiotic regimens, at least until all symptoms are resolved.

"It's a polarized situation, a total war going on," said Diane
Blanchard of Greenwich, whose children have been treated by Jones. "And
the fallout, once again, is borne by the patients." Blanchard is
co-president of Time for Lyme, a Greenwich-based advocacy group that
promotes wider education and research for tick-borne illnesses.

The disease, named after the town on the Connecticut shore where it was
first identified, and now found in all but a handful of states, is
pitting doctor against doctor. "I've never observed any disease that
has caused so much controversy in the medical community," said Dr.
Steven Phillips of Wilton, whose practice consists entirely of Lyme
patients. "It's a hotly contested area of medicine."

Dr. Charles Ray Jones is 77 years old. He graduated from New York
Medical College in 1962, interned in pediatrics at St. Luke's Hospital
in Manhattan and went on to become chief resident at Memorial
Sloan-Kettering Cancer Center.

The demands of doing research while managing a busy private practice
motivated Jones to leave New York City in 1968 for a pediatrics
practice in Hamden. By the middle of the next decade he says he began
encountering a new form of juvenile arthritis, which shortly came to be
identified as Lyme disease. Since then, Jones has treated more than
10,000 children for Lyme from virtually every state, and from around
the world.

Jones said that the children who end up as his patients are often
children with persisting and more serious symptoms of Lyme. In fact, he
said, 80 percent of his cases are children with a chronic form of the
disease. They come to him in every conceivable condition, he said,
including those who are blind as a result of Lyme, or paralyzed, or
wracked with pain.

Jones said that of all the children he has treated, "about 75 percent
are [now] well, and without symptoms."

At the end of the hallway in his office is Jones's "chart room," a
windowless box in which four metal file cases, each 6 feet tall and
filled on both sides with bulging manila folders, occupy almost all the
available space. These are the files of his roughly 3,000 active
patients, containing the records of each office visit, the results of
every test, and the complete chronicle of their afflictions.

It's the content of two of those files, however, that has placed Jones
is in the middle of a state Medical Examining Board hearing in Hartford
that will determine whether he will be allowed to continue treating
patients.

In late 2005, the state Department of Public Health charged Jones with
violating "the applicable standard of care" for his treatment of two
young siblings who live in Nevada. The complaint was initiated by the
children's father, who is involved in a custody dispute with their
mother, an emergency room nurse. After investigating the complaint, the
health department brought charges to the medical board, alleging that
Jones diagnosed Lyme disease in the children without examining them,
that he failed to consider other causes for their symptoms, and that he
improperly prescribed antibiotics.

At his fourth hearing date on Sept. 7, Jones denied all of the charges.
Because of the volume of Lyme patients he has seen in more than three
decades, he told the three doctors from the Medical Examining Board who
are hearing his case, "I am entitled to rely on my clinical experience
in addressing the needs of a severely sick patient population."

Jones's hearing began March 23; the last scheduled session is Sept. 28.
When the hearing is completed, the full 15-member state medical board
will decide whether to accept, reject or modify the panel's
recommendation, and decide whether, after four decades of practicing
medicine, Jones's license should be revoked or other disciplinary
action taken. Because it is an administrative hearing based on findings
of fact, Jones's grounds for appeal are limited.

The prospect of losing Jones's services terrifies his patients and
supporters, some of whom have traveled from as far as Florida simply to
support him at the hearings.

"You have to understand how important and beloved Jones is to the Lyme
community," said Sheila Lederman, who came from Parkland, Fla., west of
Boca Raton, with her daughter, Jessica, to attend a hearing in June.
Jessica, now 18, was first treated by Jones six years ago. "He's saved
a lot of children," Lederman said. "That's why people call him a saint.
I'll do everything I can for this man."

Virginia Anez, who lives in Boynton Beach, Fla., attended the same
hearing with her 10-year-old daughter, Mary Ann, also a patient of
Jones.

"Of course I'll help him," she said. "There are things in life you do
no matter what, and Dr. Jones is one of those things."

Debbie Siciliano of Greenwich, the other co-president of Time for Lyme,
said she has been a staunch supporter since Jones successfully treated
her son for Lyme nearly a decade ago. She called his prosecution "a
witch-hunt against Lyme-literate doctors" and "a crime. They're taking
away these kids' only hope."

The case is also being watched by state Attorney General Richard
Blumenthal, who has been closely involved with issues involving the
reporting, diagnosis and treatment of Lyme.

"I'm very concerned there may be a perception, rightly or wrongly, that
care for Lyme disease is discouraged" by the charges against Jones,
Blumenthal said. "A lot of people are watching, and it may have broader
implications." The case, Blumenthal added, "certainly has acquired a
larger dimension than a single individual."

In part, that's because the proceedings against Jones appear to be part
of a pattern against doctors who take an aggressive approach to
treating Lyme, said Pat Smith, the president of the Lyme Disease
Association, a national nonprofit organization, based in Jackson, N.J.
Smith said that more than 30 Lyme doctors in 10 states have been
brought before state medical boards since the early 1990s. Most
recently, in June, Dr. Joseph Jemsek, an infectious disease specialist
in North Carolina, was found guilty of inappropriately diagnosing and
treating Lyme. His license was suspended for a year, but the suspension
was stayed, and restrictions were placed on his practice.

Even more troubling than the charges against Jones, said Smith, is "the
terrible climate that has been deliberately created by vested interests
and others in this country to keep Lyme physicians from wanting to
treat patients. If we had a wealth of treating physicians, we wouldn't
be seeing these situations happen. That, to me, is the real story."

The Jones case may be particularly fraught because he is a
pediatrician. Children could be considered Lyme's most vulnerable
victims since playing outside in suburban yards puts them for extended
periods in habitats favored by deer ticks.

"I don't know what's going to happen to these children if he can't
practice anymore," said Paula Capasso, a Guilford resident whose
17-year-old daughter, Alexandra, has been a patient of Jones's since
2000. "It scares me, because we're in deep trouble if this goes bad."

Despite Connecticut's dubious claim to fame as the home of Lyme
disease, the state health department, citing budget restraints,
eliminated the mandatory reporting of Lyme by laboratories in 2003,
although doctors are still charged with reporting them. In 2002,
Connecticut ranked second in the nation, with 4,631 cases of Lyme
disease reported. In 2003, after labs stopped having to inform the
state about Lyme cases, the number of reported cases fell 70 percent,
to 1,403.

But it's clear that the incidence of Lyme in Connecticut is rising.
Thirty-four percent more cases were reported in 2005 than in 2004, with
the largest increases in New London, Middlesex and New Haven counties.
Although Connecticut overwhelmingly has had the highest rate per capita
in the country since 1992, the state now ranks seventh nationally in
the number of reported cases. It's impossible to know what the state's
rank would be if required reporting by laboratories were re-instituted.
This doubt is mirrored nationally, as well. Across the country, 21,304
cases were reported to the CDC in 2005, an 82 percent jump in 10 years.
But the CDC admits its strict reporting criteria captures just 10
percent of actual Lyme cases.

Meanwhile, Connecticut appears to be holding its own in its role as
Lyme disease central.

"It's epidemic around us this year," said Dr. Mary Cummings Satti, an
internist in Old Lyme. "It's just everywhere right now."

And the state's attorney general keeps pushing state officials to beef
up its reporting requirements. At this point, although doctors are
supposed to inform the health department about cases of Lyme, a strict
mandate for laboratories to do so is recognized as being critical to
gauge the true incidence of the disease. At a public hearing on Lyme in
January 2004, Blumenthal urged the Public Health commissioner, Dr. J.
Robert Galvin, to establish a better reporting requirement. Although
Galvin said one would be in place by 2005, more than halfway through
2006, the old system remains. In a July 25 letter to Galvin, Blumenthal
called the under-reporting of Lyme "particularly harmful for the public
health." It neutralizes preventive efforts and makes those with
symptoms less likely to seek care if it isn't being reported in great
numbers, he said.

What most concerns Blanchard, the co-president of Time for Lyme, is
that Connecticut's Lyme numbers represent "the tip of the iceberg," and
affect the funding Connecticut receives from the CDC for state health
programs. "It's been left in the hands of grassroots organizations to
support the citizens of this state," she complained. "Why is that?"

The simple answer is because of the bitter battle over the standard of
care, a battle that exists because there is no direct test to identify
the Lyme bacterium. Without one, there's no way to determine if the
infection has been eradicated, so the diagnosis of Lyme remains a
clinical one.

On one side of this fight is the Infectious Diseases Society of
America, or IDSA. This large organization of physicians, scientists and
other health-care professionals with specialty training in infectious
diseases has established guidelines for diagnosing and treating Lyme.
Adopted by the CDC, these guidelines have become the de facto national
standard. The society believes Lyme causes largely objective symptoms
that can be cured with a limited course of antibiotics, typically not
more than 21 days.

On the other side is the International Lyme and Associated Diseases
Society, or ILADS, founded in 1999 by physicians and academics who
believe mainstream medicine is too conservative in its treatment of
Lyme. A much smaller group of practitioners, they are more proactive in
advancing the standard of care based on what they say is new research
and on new clinical findings its members uncover. They say Lyme should
be treated with antibiotics until all symptoms are resolved, and
usually at least two months beyond that to be sure the infection is
eradicated.

Other than agreeing that Lyme can be successfully treated if caught
early, the two camps agree on little else: testing protocols, the use
of antibiotics, acceptable research, even whether there is such a thing
as chronic Lyme disease (one side says it's merely persisting symptoms,
the other a persisting infection).

"It's like two people speaking different languages and trying to
communicate," said Dr. Kenneth Liegner of Armonk, N.Y., a leading
physician associated with ILADS, the smaller, more Lyme-focused group.
"It's very nasty, very destructive."

According to Dr. Henry M. Feder Jr., who specializes in pediatric
infectious diseases at Connecticut Children's Medical Center in
Hartford, "the great, great majority of Lyme patients fit a very
straightforward kind of pattern."

Or, as Shapiro, from Yale, put it, "Lyme disease in Connecticut is not
all that hard to diagnose. The bottom line is, Lyme disease causes
objective findings. If a patient has only non-specific symptoms, it's
unlikely due to Lyme."

As for what Shapiro defined as objective evidence marking this pattern
- a rash, often, but not always, in the form of a bull's-eye; swollen
joints, facial paralysis and meningitis - Jones said, "Unfortunately,
99 percent of the people I see don't fit into those categories. If one
uses [the infectious diseases society] guidelines, then very few people
are going to have Lyme."

The controversy over the use of antibiotics boils down to diametric
differences on costs and benefits. Shapiro said he believes extended
courses of antibiotics, beyond being expensive, can cause gallstones,
heart infections and create treatment-resistant "superbugs."

"If there was evidence that long-term antibiotics made patients
better," he said, "I'd jump right on the bandwagon."

But for Jones, the benefits outweigh the risks, and not just in a
child's quality of life. Taking into account the cascading effects of
untreated or under-treated Lyme, which can lead to neurological and
cognitive damage, Jones said that by treating until symptoms resolve,
"you're enabling a child to be well and fulfill their genetic
potential, in terms of going to school, being part of the workforce,
and contributing to society's well-being."

Dr. Phillips of Wilton, a past president of ILADS, characterizes
himself as relatively conservative in his use of long-term antibiotics.
He said it was "a huge judgment" when to prescribe antibiotics. "But
with sicker patients, it shouldn't be controversial at all."

Satti, the Old Lyme physician who described herself as a traditionalist
who treats her patients "with a little bit of flexibility,"
nevertheless has concerns about long-term antibiotics. She said she
asks herself, "'OK, if I go down this path, could I do more harm than
good?' These treatments are not benign. And until we understand it
better, I'm not willing to take that risk."

Meanwhile, all these conflicts involving Lyme feed the frustration of
parents who say they've gone in vain from doctor to doctor and been
told their child doesn't have Lyme, and who say they've been forced
into becoming self-taught experts on the disease. Guilford resident
Capasso said she attends medical conferences on Lyme "because I really
don't trust doctors anymore." She paused. "I trust Dr. Jones."

Feder, of Connecticut Children's Hospital, said not having an answer
for patients with persisting symptoms beyond the standard course of
antibiotics, whatever their cause, "is where traditional medicine lets
these patients down." Yet whatever remains wrong with these patients,
Lyme isn't always the case, he said. "The bias of ILADS is to make
everything fit Lyme disease."

Why the apparent intransigence to new ideas? Jones attributed it to a
number of reasons, among them an "old-boy network" of doctors who talk
only to each other, don't brook any criticism and "don't go outside of
their box." He also believes that many establishment physicians are
compromised by conflicts of interests because of their involvement with
insurance and pharmaceutical companies, through consulting contracts,
research, and patent applications.

Before he turned to medicine, Jones briefly attended Boston
University's Divinity School, where he met Martin Luther King Jr. He
said he learned from King "to be willing to take a stand, regardless of
the way others feel, as long as you were doing what was right."

And that's how he feels about the repeated challenges to his methods by
mainstream doctors. "I know I'm right," he said. "If Dr. Shapiro
practices for another 20 years, he would not see as many patients as I
see in a year."

Voices of moderation in this debate are hard to find. "There are really
very few practitioners that are in the middle," explained Satti.

"To the layperson," she continued, "I could see how you'd say, 'What
the heck is wrong with the medical community?' But it's not that cut
and dried. It's a new disease, and we just don't understand it yet."

There is no acquired immunity with Lyme disease, and the unique
response of each person's immune system is another huge variable. In
addition, new strains of Lyme are being discovered regularly - there
now are more than 300 - and the effects of co-infections from the same
tick bite are slowly becoming understood. That's why, more than three
decades after the disease was first identified, Satti said of Lyme,
"It's getting more complicated."

She was able to take a step into one direction rarely found among those
who treat Lyme. It's possible, she said, that mainstream medicine may
ultimately reflect the views of the "Lyme literate" community.

"I say that honestly thinking that these people the medical community
considers quacks are probably all right," Satti said, "and 10 years
from now we'll realize their aggressive approach was absolutely right."

There have been positive developments regarding Lyme. In July, Smith,
of the Lyme Disease Association, and a delegation that included four
members of Congress met for the first time with CDC director Dr. Julie
Gerberding. Smith said she was encouraged by the response to the dozen
or so issues raised. Dr. Raphael Stricker, president of ILADS, said
he's been invited to be part of a discussion on long-term therapy for
Lyme patients at a meeting next month of the Infectious Diseases
Society of America.

U.S. Sen. Christopher Dodd has co-sponsored a bill that, among other
things, will provide $100 million over five years for Lyme research.
And Time for Lyme and the Lyme Disease Association is about $200,000
short of raising the $3 million it needs to establish the first Lyme
disease research center in the United States, at Columbia-Presbyterian
in New York City.

In Connecticut, Attorney General Blumenthal, is impressed by what he
called "the volume of complaints" he's received from patients and
doctors. Blumenthal is reviewing proposals for the next General
Assembly to amend legislation passed in 1999 that requires insurance
companies to provide at least 30 days of intravenous antibiotic therapy
and 60 days of oral medications. Blumenthal said the law needs to be
"toughened and tightened to guarantee absolute consistent and complete
coverage" in regard to diagnosis, second opinions and length of care.

None of these developments, however, will have any bearing on whether
Dr. Charles Ray Jones will continue treating children with Lyme.

`Devastating" is the word Liegner, the Armonk, N.Y., doctor, used to
describe the possibility of Jones losing his license. "I think there
will be hell to pay if that happens - from his patients. They're not
going to take it lying down."

Jones estimates the defense of his license over the months of hearings
will cost more than $1 million. He is largely letting others solicit
for and supervise his legal defense fund so he can focus on his
practice, which remains all-consuming.

During one stretch in July, he worked 14 days straight, said Sabra
Hughes, his office manager. Seven-day weeks were routine, though, until
Hughes persuaded him to slow down.

Jones's staff has resorted to trickery to force time off upon him,
sometimes putting a phantom patient into the appointment book at the
end of a day. But even when he's not working he's nearby. A widower
since his wife, Margery, died in 1994, he lives in one of the
apartments in the building.

"On Sundays, when most people are parked in front of their TVs watching
football, he's downstairs working on something having to do with Lyme
disease," Hughes said. "We try to get him out once in a while, feel the
sun, but he doesn't believe in vacations. We're working on that, too."

Efforts to train a successor have so far been unsuccessful. Still,
Jones isn't looking for an exit strategy. Asked how long he expects to
continue, he first joked "about 20 years," then added, "As long as I
can, I will. I enjoy practicing. I can't see sitting around not doing
it, knowing that children would be impaired."

To accommodate two hip replacements, spinal-fusion surgery and
arthritis, he wears dark track suits and black loafers rather than
doctor's whites, disarmingly ambling through his office with a slight
limp and a placid expression.

On this day, Jones is examining twins he said acquired the Lyme
infection through their mother's breast milk, since he said he believes
she was symptomatic when the girls were born. Jones says he has treated
400 to 500 children who were born with Lyme. The CDC, however, says it
has no reports of Lyme disease transmission from breast milk.

Hailey and Gilian Raifman, 3-year-old sisters with blond curls and
butterfly barrettes, have made the two-hour ride from Queens, N.Y.,
with their mother, Melissa, and an uncle. Because of her history with
Lyme, Melissa said she was concerned about her girls when they began
exhibiting neurological and behavioral problems. "One doctor told us we
were chasing after ghosts. He said that I wanted them to be sick,"
Melissa said.

The girls see Jones separately, each sitting on his knee as he asks
them questions, before he brings them to his examining table, where
they allow him to gently manipulate their limbs and joints.

"This is very good," Melissa said as Jones examined Hailey. "Her
pediatrician can't even go near her, she starts screaming and crying.
But she has a lot of trust with Dr. Jones."

Scenes like this are what motivate Jones's supporters to attend his
hearings, contribute to his defense fund and sing his praises to anyone
who'll listen.

"The thought of him not practicing, and so many kids suffering," said
Guilford resident Paula Capasso, "is unimaginable." She called his
circumstances "very, very scary. What's scarier is we don't have enough
doctors that are willing to treat.

"I don't know what people are going to do."

Gary Santaniello is an Easton-based free-lance writer. This is his
third cover story for NE.

Copyright 2006, Hartford Courant