New Lyme disease treatment guidelines cause controversy
By Melissa Klein The Journal News (Original Publication: November 15, 2006)
Updated guidelines suggested - Recommends that select patients, under certain circumstances, get a single preventive dose of an antibiotic after a tick bite.
- Adds treatment information for two other tick-borne infections: human granulocytic anaplasmosis (previously called ehrlichiosis) and babesiosis.
- Proposes a definition of chronic Lyme or post-Lyme disease syndrome.
New treatment guidelines for Lyme disease recommend that select patients receive a single preventive dose of an antibiotic after a tick bite and also seek to define which patients truly have lingering symptoms, the most controversial area of the illness.
The guidelines, which also discourage the use of long-term antibiotics, were put out this month by the Infectious Diseases Society of America. They update the last set of recommendations, which were made in 2000.
"These guidelines represent the best that medical science has to offer at this point in time," said Dr. Gary Wormser, the lead author of the recommendations and the chief of the division of infectious diseases at Westchester Medical Center and the affiliated New York Medical College in Valhalla.
Wormser said the guidelines were drafted by a group of 14 experts from nine institutions and that adherence to them by doctors was voluntary.
But another medical group, the International Lyme and Associated Diseases Society, has called for the journal that published the guidelines, Clinical Infectious Diseases, to retract them, saying they are biased and threaten to harm patients. The group supports the long-term use of antibiotics in some cases.
"I think that if you have patients who have a chronic infection, which is what we believe chronic Lyme disease may be, then withholding therapy for that is harmful," said Dr. Raphael Stricker, a San Francisco internist who is president of the 300-member group.
Dr. Henry Masur, the president of the 8,000-member Infectious Diseases Society of America, said his organization had listened to the other group's point of view, but stood by its guidelines.
"We don't think that their arguments are convincing enough to suggest that we should modify or change our guidelines," Masur said.
Lyme disease is caused by the bite of a deer tick. The infection can cause a red rash, muscle and joint pain, and facial paralysis in the early stage. It can later lead to arthritis and neurological symptoms.
The early stage is usually treated with antibiotics such as doxycycline or amoxicillin. There is little disagreement that when treated promptly, patients usually fare well.
Provisional counts from the state Health Department for this year put the number of Lyme disease cases in Rockland County at 201; in Putnam County, 123; and in Westchester County, 116.
The best prevention methods included using tick repellents, wearing protective clothing and vigilantly checking the body for ticks, according to the guidelines.
To ward off an infection, the doctors' group recommends giving one 200 milligram dose of doxycycline to appropriate patients if a tick has been attached to them for at least 36 hours. The treatment must be started with 72 hours of removing the tick.
"We don't recommend that every tick bite be treated with doxycycline, (just) one dose of doxycycline," Wormser said.
A study done at New York Medical College demonstrated success with this type of treatment.
Dr. Janice Montague, a pediatrician in Tuxedo Park, said parents often push for treatment if they discover a tick on their child.
"I think having that option with a one-dose regimen is a really great thing, but I think we still have to be prudent not to over treat them," she said.
The treatment is not recommended for children younger than 8.
How to treat patients who continue to have symptoms is among the most contentious areas of Lyme disease. These patients are said to have chronic Lyme.
"Unfortunately, it is apparent that the term chronic Lyme disease is also being applied to patients with vague, undiagnosed complaints who have never had Lyme disease," the treatment guidelines say.
Some patients may simply have "aches and pains of daily living," the document says.
In order to clarify this condition, the doctors proposed guidelines for what they are calling "post-Lyme disease syndrome." That definition includes patients who have fatigue, widespread muscular-skeletal pain and cognitive difficulties for at least six months after finishing initial antibiotic treatment.
Prolonged antibiotic therapy for such lingering symptoms "has not proven to be useful," the paper says.
"To me, the jury's out on that," said Ann Ciriello of North Salem. Ciriello said her 37-year-old son, Christopher, was debilitated by Lyme disease and several rounds of prolonged antibiotic therapy did not help him.
But, she said, he did find significant relief after traveling to Italy, where he underwent 18 days of therapy with a drug cocktail that included antibiotics.
In drafting the treatment guidelines, Wormser said the group reviewed at least 400 studies.
"From my perspective, we really tried to consider all points of view," he said. "We really tried to look at all the available scientific studies including ones in our judgment that were not of high quality, but we considered them."
Among the points of disagreement that Stricker said his group had with the guidelines is that patients with persistent symptoms were often very ill, not merely suffering from aches and pains and, when treated, they often get better.
"We believe in open-ended therapy - that you have to tailor the treatment to the patient and if that means long-term therapy, that's what may be necessary," he said.
I called Melanie Klein (see number at the end of the article) and she is not going to the protest. I said that it was imperative that someone cover the other side of the coin to hear what patients/victims of Lyme think of Wormser's edict.
Klein has heard from a lot of people. So why don't folks on this site give her and earful too?!
We've posted the November 30th protest poster at my LLMD's. Post it at yours too!
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
I have written the following to the author of the article, I don't know if she publishes responses but there you have mine:
______________________________________________ I read your article on the controversies of "chronic Lyme" and "post lyme syndrome" and "normal aging". After reading it, I must say I continue to be saddened by the divide in physician viewpoints and believe whole heartedly that for the IDSA to say they have made a comprehensive decision and yet exclude an entire group of the clinicians who are treating the majority of "chronic lyme" patients...says to me that, the IDSA claims are not comprehensive at all but rather, exclusionary.
It is more than insulting to read this quote I took from your article:
"Unfortunately, it is apparent that the term chronic Lyme disease is also being applied to patients with vague, undiagnosed complaints who have never had Lyme disease," the treatment guidelines say. Some patients may simply have "aches and pains of daily living," the document says. In order to clarify this condition, the doctors proposed guidelines for what they are calling "post-Lyme disease syndrome." That definition includes patients who have fatigue, widespread muscular-skeletal pain and cognitive difficulties for at least six months after finishing initial antibiotic treatment."
I am so sorry to say that this is an extremely harmful statement to be blanketing and violates the hippocratic oath. This invalidates people who are in a great deal of debilitating pain both functionally and physically who indeed, have been diagnosed by their capable physicians with Lyme disease. It brings further desperation to people who are suffering incalculable amounts and can only further urge the feelings of hopelessness to be fighting the devastating effects that chronic encephalopathy and the other myriad symptoms late dissementated Lyme does to all parts of the body...and then also find that the establishment says, "you are just aging". It is completely shameful to just disregard this patient population and I find that in modern day America it is unacceptable.
It does not matter what kind of percent of people are in these shoes the fact is that there are many thousands in these shoes who...did not receive a proper diagnosis long ago when the disease first invaded and went on with their lives year after year noticing further deterioration but continuing to get on with it until the disease, never treated, finally took over and got the upper hand. To disregard these people as if the truth of their experience is not valid, I must say...seems like accomplice to murder.
Whether long term antibiotics works or not may or may not be true but evidently there is a large number of clinical practitioners who have seen evidence and studies have been done to back this up. I do not know if long term antibiotics work and I do see the possible dangers but the crime is that rather than coming together for the common good of a very suffering patient population, the IDSA are throwing them in the dumpster as if they do not exist at all. It would be much wiser to be open minded with the intent to actually discover something new about a new ever growing illness that is beyond words in the description of the kind of havoc it causes on people.
My plea is not to agree with one side or another. My plea is for the two sides to come together for the sake of the patients who find themselves in an abyss of something beyond their ability to navigate.
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! Wormser is so damaging! I live close to where the 11/30/06 protest will be held -- I'm definitely going! 
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