New Lyme disease guidelines prompt patient protests
Friday, November 03, 2006 BY ANGELA STEWART
The Star-Ledger
New guidelines that discount the existence of a chronic form of Lyme disease and discourage long-term antibiotic treatment are stirring up controversy about how best to manage the tick-borne illness.
The guidelines also recommend against combining antibiotics to treat the disease, in addition to giving a thumbs-down to experimental or alternative therapies -- things like hyperbaric oxygen therapy and vitamins/nutritional supplements.
Members of the Infectious Diseases Society of America, which wrote the new guidelines, contend they are based on the best scientific evidence available. The Alexandria, Va.-based society represents physicians, scientists and other health care professionals. The guidelines were published in the Oct. 2 issue of the Journal of Clinical Infectious Diseases.
"These guidelines are based on more than 25 years of (clinical) experience and scientific studies ... unproven and experimental therapies are not endorsed," said Eugene D. Shapiro, a professor at Yale University School of Medicine who helped draft the guidelines.
But some Lyme patients and advocacy groups, as well as doctors, said those suffering from the disease will be harmed.
"They remind me of the Ten Commandments. They are full of 'Thou Shalt Nots,'" said Jeannine Phillips, 56, of East Brunswick, who heads LymeQuest, a local support and advocacy group.
The Jackson-based Lyme Disease Association Inc., a national patient education and advocacy organization, has started a petition drive on its Web site (www.LymeDiseaseAssociation.org) to protest the guidelines. More than 9,000 signatures have been collected, as have many personal stories.
For instance, there are reports from other states of pharmacists refusing to fill antibiotic prescriptions for patients, Phillips said.
The standard course of antibiotic treatment for Lyme is three to four weeks, but some patients end up being treated well beyond that, in some cases for months or years.
"One person had their insurance company deny treatment because the guidelines do not recognize Lyme can be a chronic disease," said Pat Smith, who heads the association. "These (guidelines) are absolutely devastating."
Lyme disease is transmitted by a tick bite and is sometimes characterized by a round, red lesion with a bull's-eye appearance.
People who are bitten may experience joint pain and flu-like symptoms, such as muscle aches, fever and fatigue.
If left untreated, the bacteria can cause heart palpitations, arthritis, severe joint pain and swelling, short-term memory loss and chronic neurological problems.
The number of Lyme disease cases in New Jersey surpassed 3,000 for the first time last year, making the Garden State third in the nation for reported Lyme cases.
Shapiro, a professor of pediatrics, epidemiology and investigative medicine at Yale, said more than 95 percent of those who get Lyme respond to a short course of antibiotic treatment.
"If there was evidence that prolonged antibiotic treatment was beneficial, I would jump right on the bandwagon," he said. If kept on antibiotic therapy too long, patients developing antibiotic resistance or even infection from intravenous lines, he said.
Shapiro said the new guidelines, which address treatment at different stages of the disease, provide "plenty of room for clinical judgment," are meant to assist doctors, not dictate to them.
Because Lyme symptoms can be very nonspecific and in some cases mimic other diseases, such as multiple sclerosis, diagnosis can be difficult. This is especially true in cases that lack the identifying rash or for which there is no positive blood test.
And when it comes to chronic Lyme, the new guidelines contend "there is no convincing biologic evidence" to support its existence in patients who have been appropriately treated with recommended antibiotic therapy. Officials at Horizon Blue Cross Blue Shield of New Jersey called it "rare" that antibiotic therapy -- either orally or intravenously -- would be necessary for more than four weeks.
"This is the period of coverage defined in our policy," said Stanley E. Harris, Horizon's senior medical director.
That may be so, but expect patient suffering to increase, as it will be hard to find doctors willing to treat them, others contend.
"If a disease can be so controversial, how can any guidelines be rigid or accepted as the standard of care?" asked Robert C. Bransfield, a Red Bank psychiatrist who sees many late-state patients suffering from depression, fatigue and cognitive impairment. "They are a step backward."
Other doctors, however, say they welcome the additional direction the guidelines provide. "I personally think they are on the money," said Jerome Levine, chief of the Infectious Disease Division at Hackensack University Medical Center.
Angela Stewart covers health care. She may be reached at [email protected] or (973) 392-4178.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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bettyg
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posted
I think it was Tincup or ?? who posted this too since that's where we have been sending replies to Angela too! I had a reply posted it in other post somewhere on the boards!
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thanks for posting this. Areneli.
Maybe it is posted elsewhere, but maybe some people who didn't see it there will see it here and be informed, tell their friends, tell their doctors, send a letter to the writer and the newspaper, etc......
posted
These new guidlines give our beautiful country and the IDSA,the right to commit murder and get away with it.If that isn't terrorism,i dont know what is. I pm'ed,and talked to a twelve year old on the phone last night.He is haveing problems as he was bit this summer,and he was given a few weeks of antibiotics,he is very sick. He had to quit junior high football,his dad said he was just plain lazy.I talked to him for twenty minutes,sure sounded like a bad case of lyme. He said he has gone to the restroom,at school and cryed.I told him he needs to tell the teachers. I then ask to talk to the father, he wouldn't talk,so the mother did. She told me the doctor said any longer use of antibiotics could do damage to his heart.He only had two weeks.I told her i was on them for years. Anyway they are takeing him toa psychiatrist on Wednesday. What a shame. Our medical field makes me ill.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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