Dr. Charles Ray Jones and our pediatric Lyme Disease fund

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."