Time is running out for Connecticut’s best known, most controversial Lyme disease doctor

This spring, Dr. Charles Ray Jones, a controversial and internationally known expert on Lyme disease in New Haven, was ready to quit.

For the last five years, Jones has been defending himself against accusations that he is violating standards of care. In March, the state Medical Examining Board declared him guilty of several charges.

He’s charged with treating patients without seeing them, prescribing medicine for children he’s never met and keeping improper medical records, among other things.

Jones argues that he has a six-month waiting list. In the interest of time, he orders blood tests before seeing patients. He once continued a prescription for an out-of-state patient after consulting with her mother, who’s a nurse.

Earlier this year, he was given four years of probation, a $10,000 fine and ordered to hire a monitor to examine his patient charts every month. The monitor, Jones expects, could cost between $2,000 and $10,000 a month.

“I can’t afford that,” Jones says. “I realized it’s hopeless.”

One day after learning of his punishment, however, a 7-year-old boy named Timmy came in for an appointment.

At an earlier visit with Jones, five months prior, Timmy exhibited problems like low muscle tone and no expressive speech. Another doctor diagnosed him with autism when he was 2 years old. Timmy’s mom noticed that when he was on antibiotics, his behavior became better. He exhibited fewer symptoms associated with autism. After he went off his medication, though, his symptoms returned to full force.

Jones thought the boy had Lyme disease, not autism.

At that first visit, Jones says, he put his hands on Timmy’s cheeks and looked into his eyes: “I hope I have the key to unlock your brain,” he said. Timmy then squirmed out of Jones’s lap and began to run around the room.

At Timmy’s follow-up visit, one day after Jones received his punishment, Timmy “climbed into my lap, put my hands on his cheeks and said, ‘Thank you for giving me the key to unlock my brain.’” Jones says. “Then he hugged me.”

“That’s why I stayed in [medicine],” he says.

“He came in at a good time.”

One of the reasons Jones is so controversial is because of patients like Timmy: Jones’ diagnoses and treatments call into question those of other doctors. While other doctors see autism or mental illness, Jones sees Lyme. Jones thinks one of the reasons he’s so disliked in the medical community is other doctors’ pride.

Jones’ supporters are so passionate about him that they’ve been paying attorney’s fees to defend him in front of the state Medical Examining Board, which hears cases of medical misconduct and metes out punishment. The board has the power to revoke a doctor’s license to practice medicine.

None of Jones’ patients has complained, he’s quick to point out, and none has been harmed by his treatment. He’s never been sued for medical malpractice. The charges against him have been levied by fathers involved in custodial battles over their children. In those cases Mom was in charge of treatment and Dad was in charge of payment and disputed the need for treatment. By complaining, Jones’ supporters say, Dad could get back at Mom and possibly skirt paying a costly medical bill. There were no allegations of harm done to the children.

Still, the state says, Jones’ style of medicine is a threat to others. (Due to the controversy involved, the Connecticut Medical Society refused to comment on charges against Jones.)

Jones has lost this most recent case and a similar case previously. He’s appealed both to the state appellate court. The legal proceedings have cost him more than $1 million, he estimates.

The punishment of Jones is more severe than the punishment of other doctors faced with more serious charges. For example, a Greenwich doctor who used his own sperm to impregnate a client in 2008 was reprimanded and fined $10,000. He’s still practicing.

Another doctor was charged in 2005 with not meeting standards of care: Two patients died from post-operative complications; one died during surgery; he unnecessarily removed a patient’s appendix. There were problems with eight of his other patients. This doctor’s license was put on probation for two years (compared to Jones’ four years) and he was fined $5,000.

After eight days of hearings in Jones’ case, the Medical Examiners Board “imposed a level of discipline on Dr. Jones’ medical license that the Medical Board apparently felt was appropriate to address identified deficiencies within Dr. Jones’ clinical practice,” said DPH spokesman William Gerrish in a prepared statement.

By July 20, if Jones has not found a state-licensed pediatrician to agree to become his monitor, he could lose his license or his license could be suspended.

The monitor would visit Jones’ practice once a month to review his patient files. If the monitor disagrees with anything in Jones’ file, he or she is to report it to the state.

At a June hearing in Hartford, Elliot Pollack, Jones’ attorney, told the Medical Examining Board that Jones’ assistant asked 209 pediatricians for help. None responded.

That’s because the case against him is so well publicized and so controversial that no one wants to be involved, Jones’ supporters say. The state says none has responded, because Jones didn’t try hard enough: There were no phone calls made and no follow-ups with the 209 pediatricians.

A Massachusetts company that contracts monitors located one for Jones’ case. The company, however, would not tell Jones who the monitor would be and wanted him to sign a contract that attorney Pollack found troublesome.

The board had little sympathy. “Either find a monitor or stop practicing,” said board member Dr. Henry Jacobs.

As of press time, Jones did not have a monitor lined up.

Jones and his supporters see the case against him as a case against treating and acknowledging chronic Lyme disease — intended to send a message to other doctors.

Lyme disease was discovered in the mid 1970s in Lyme, Conn. It’s caused by deer tick bites and can cause fevers, headaches, fatigue and a distinctive bull’s-eye rash. Long-term, the infection can spread to the joints, heart, nervous system and brain. The common treatment is antibiotics up to 28 days, but some patients and doctors, like Jones, believe that’s not enough for chronic Lyme disease.

Advocates of chronic Lyme treatment say neither the state nor the medical community is doing enough. Volunteer-run Lyme Disease Task Forces have popped up in towns around the state to educate residents on how to prevent and treat Lyme.

Others see chronic Lyme as a myth and say it’s misused to diagnose medical mysteries, like long-term fatigue.In any case, the Connecticut state legislature passed a bill in 2009 that protects doctors who treat chronic Lyme with antibiotics over extended periods. The law “allow[s] a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.”

Robert Galvin, head of the state Department of Public Health (DPH), is one of only a few people to testify in 2009 against the bill, saying: “The unintended consequences of this bill will compromise the Department’s ability to protect patients with Lyme disease.” He said the bill left no flexibility, “particularly in cases where the care being provided to a patient deviates from current evidence-based practice.”

The bill passed unanimously in 2009. Jones and his patients hoped the law would protect him.

“Neither the Department’s initial charges, nor the Medical Board’s ultimate decision after the hearing, concerned the issue of chronic Lyme,” said DPH spokesman Gerrish.

“This case is about Lyme disease,” says state Rep. Jason Bartlett (D-Bethel), who sponsored the Lyme bill. “I think that law should afford Dr. Jones the protection he deserves.”

Bartlett says he’ll ask the state’s next attorney general to investigate whether the state DPH and the Medical Examiners Board are violating the Lyme bill.

Jones is being “harassed” for treating chronic Lyme, Bartlett says, and that the DPH and the Medical Examiners Board have a “vendetta” against him. He adds that the requirement to get a monitor is “garbage” and “ridiculous.”

“If the state thinks he’s such a danger, the state should pay for its own monitor,” he says.

“Dr. Jones is not being treated differently than any other practitioner who has a requirement for a monitor. All practitioners who are being monitored are required to find their own monitors,” says the DPH’s Gerrish.

Karen Gaudian, of Ridgefield, has two daughters, now 18 and 16, who have Lyme. They first became sick at ages 8 and 7. The eldest had severe fatigue. “The kind of fatigue that forces a child to crawl up the stairs. Taking a shower might be more than she could do in one day,” she says. Her other daughter had major stomach pain. Doctors blamed the stomach pain on nerves or a school phobia.

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