Hartford Advocate
Date: Thursday, February 01 @ 03:00:00 EST
Topic: Lyme In The News
Ticked Off
A Lyme Disease Community Rallies Around A Connecticut Doctor.
-->By Adam Bulger
January 25 2007
Joy Walker and Lucy Barnes are really into Lyme disease. Both women sent me e-mails, from accounts embedded with references to Lyme, about the ongoing legal travails of Wallingford’s Dr. Charles Ray Jones. They are part of a surprisingly active community of people who have devoted much of their lives to Lyme disease.
Barnes termed the case against Jones a “witch trial,” and believes Jones has been unfairly targeted for his successful treatment strategies.
“Most doctors, I’d say, hate Dr. Jones. They are misdiagnosing children, and the children get sicker and sicker, and finally the parents start looking for help on their own. They look at support groups and on the Internet. They come to people like myself and we send them to Dr. Jones,” Barnes said.
To Walker, Barnes and other Lyme advocates, Jones is an unfairly persecuted hero.
“He’s the only one who’s taking these children and caring for them in the whole country — actually the whole world,” Barnes said. “He understands that Lyme is a complex illness.”
The accusations brought against Dr. Jones by the Connecticut State Medical Board are fairly straightforward. Jones, a pediatrician who deals almost exclusively with Lyme disease sufferers and is part of group called the International Lyme and Associated Diseases Society, or ILADS, diagnosed a child over the phone, without ever meeting the child in person.
“He was coughing so much he was going to be expelled from school,” Jones said. “I thought it was the humane thing to do. I did it with prudence and foresight, as well as with compassion and concern.”
But the child’s father complained to the state medical board, which launched into a series of hearings over Jones. His most recent hearing, scheduled for Jan. 18, was cancelled. The case is still pending, with the next hearing scheduled for Jan. 25.
Barnes, Walker and others say the Jones case is illustrative of a nationwide debate surrounding Lyme disease.
“The Jones trial is part of a nasty pattern of professional character assassination aimed at ILADS-sympathetic doctors, a pattern which the Lyme community resists at every turn,” Walker said in an e-mail.
They and the people behind Web sites like LymeDiseaseAssociation.org and organizations like the National Capital Lyme Disease Association have followed Jones’ hearings closely. Hundreds of people have reportedly attended his seven previous hearings.
Jones and others in ILADS argue that Lyme disease is more prevalent and persistent than many medical authorities say.
“We have a different view of Lyme than the infectious disease people do. We think Lyme is complex and difficult to treat, and that there definitely is chronic Lyme disease which can demand more treatment than just the three weeks they advocate,” Jones said.
But the Infectious Diseases Society of America clashes with ILADS in how they view the standard of care for Lyme disease. The IDSA, by contrast, advises a conservative approach to the diagnosing and treatment of the tick borne illness.
“This contentious debate over the chronic nature and proper treatment of Lyme forms the background to the Jones investigation,” Walker wrote in an e-mail.
Jones’ struggle is at the frontline of the debate. The members of the Lyme community view him as one of the world’s few doctors who are treating Lyme disease correctly.
But the national Center for Disease Control accepts the IDSA’s view of Lyme.
“For the most part, the evidence shows that most people recover from appropriately recognized and appropriately treated Lyme disease. Only a small subset of patients have longer lasting symptoms,” CDC Epidemic Intelligence Service officer Kevin Griffith said.
The CDC and IDSA state that Lyme disease is treatable, and say that Jones’ longer antibiotic treatments do more harm than good.
“Nearly all people — more than 95 percent — who do get sick with Lyme disease and are treated with the recommended course of antibiotics get better and go on with their lives,” said Gary Wormser, M.D., lead author of IDSA’s 2006 guidelines on Lyme disease, in an IDSA document.
According to IDSA guidelines, two weeks to a month and a half of antibiotic treatments effectively kills the disease. The IDSA believes using antibiotics on a long-term basis to treat Lyme is ineffective and potentially harmful to patients. Jones, by contrast, will prescribe antibiotics until the patient is symptom free for two months.
Jones said he is aware of the problems long-term antibiotics use can cause, but says it’s the best treatment option available.
“After 10,000 children with Lyme I have yet to see that happen,” Jones said. “The people who criticize Lyme physicians for using long-term antibiotic therapy think nothing of having their patients with acne on Tetracycline and Minocycline.”
ILADS proponents argue that Lyme is a far wider reaching disease, one that stays in the body and requires more extensive treatment, than what the IDSA and their allies believe.
“The IDSA guidelines say there’s no such thing as chronic Lyme disease. They know damn well there is,” Forschner said.
Lyme disease was named for the Connecticut town where early cases were spotted in the ’70s. According to the CDC Web site, there were 23,305 reported cases of the disease in America in 2005. Several Lyme supporters said that number is low, due to the low percentage of Lyme disease getting reported. The IDSA standard blood test for Lyme detection, they say, is inadequate.
“This small group of conservative academics is saying that if you don’t have a positive test, you don’t have Lyme,” Forschner said.
Connecticut Attorney General Richard Blumenthal is investigating IDSA for anti-trust violations with regard to their Lyme disease guidelines. The anti-trust inquiry was brought on by Lyme advocate Lorraine Johnson, one of Jones’ attorneys. Blumenthal’s office did not respond to a request for comment.
One Lyme disease advocate implied that eventually the IDSA would change their view on the disease.
“If you go back to the ’70s, we were told by a lot of the same academics that are still hanging around that it was a south eastern Connecticut shoreline disease. It causes inflammation in your joints and bull’s eye rashes. That’s all there is to Lyme disease,” Forschner said.
He added: “They were wrong. It’s country wide and world wide. It’s not just joints … They’ve been behind the curve very consistently.”
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