The Great Lyme Debate Patients ache as doctors disagree about whether there is a chronic form of the tick-borne malady.
By Mary Carmichael Newsweek
Aug. 6, 2007 issue - There's a debate raging over Lyme disease, although you'd never know it unless you've been paying close attention--because on the surface it sounds like the dullest argument imaginable. Last year, the Infectious Diseases Society of America issued new guidelines saying physicians should treat Lyme with antibiotics for no longer than 30 days. Some docs think that's wrong. It's a seemingly straightforward difference of opinion. So why has the debate dissolved into animosity, with one side suggesting that its opponents have no credibility and the other slinging deeply personal insults on the Web? And why has it now spilled out of medical journals and into the office of a state attorney general? Clearly, something other than ticks is bugging a lot of doctors. Story continues below ↓advertisement
Lyme disease--the most common insect-borne ailment in America, with roughly 20,000 cases diagnosed each year and more undetected--is transmitted mostly by a well-known pest, the deer tick. But the real culprit is something even nastier, a bacterium called Borrelia burgdorferi that lives in the tick's gut. When Borrelia infiltrates the human body, it can cause a suite of distinctive symptoms, most notably a flulike feeling and a red rash like a bull's-eye. Sometimes, though, it causes no symptoms at all, and that's more dangerous, because the early signs are the only warnings doctors have. If Lyme is left undiagnosed and untreated, its consequences can be serious, including arthritis, meningitis, heart problems and inflammation of the brain. "The real secret," says Dr. Michael Zimring, director of the Center for Wilderness and Travel Medicine at Mercy Medical Center in Baltimore, "is to be able to recognize the disease early enough."
Zimring would know. Several years ago his wife felt fluish and came down with an oval-shaped rash. Zimring wasn't sure what she had, but "knowing our backyard is loaded with ticks was enough," he says. He started his wife right away on one of the classic, effective antibiotics used to treat Lyme. When her medical tests came back, they proved him right. "I treated her for three weeks," he says, "and that was it. No problem."
Unfortunately, not all Lyme patients recover so easily. And that's what's at the heart of the debate--some docs think patients who are treated inadequately can develop a chronic form of the disease, while others deny that it's possible. Dr. Rafael Stricker, president of the International Lyme and Associated Diseases Society, believes in "chronic Lyme disease," and he says that in his clinical experience about 70 percent of patients with it get better if they're treated long term with the same drugs used to treat early infection. But the doctors who made the new IDSA guidelines on treatment say there's no such thing as chronic Lyme, because in most patients who complain of it, Borrelia isn't detectable in the body. Dr. Gary Wormser, who chaired the IDSA panel, prefers the term "post-Lyme syndrome." Treating that syndrome with high-dose antibiotics for months --as some physicians did before the new guidelines--can only hurt patients, he says. It can give them gallstones and infections and lead to antibiotic resistance while not curing anything. "The majority of patients treated for 'chronic Lyme' do not have post-Lyme," he says, "and in fact never, ever had Lyme disease at all."
This does not sit well with thousands of patients who believe they do have chronic Lyme and badly want antibiotic treatment for it. "The IDSA is basically saying to them, 'We're right, you're wrong, we don't want to listen to you, just take some antidepressants and go away'," says Stricker. The IDSA is a highly respected group of doctors. But it's facing formidable opposition, not just from Stricker's group (and angry patients who've taken to Internet message boards) but also from the attorney general's office in Connecticut, the state with the country's highest incidence of Lyme disease. A.G. Richard Blumenthal has launched an investigation of the IDSA panel, looking into whether it ignored any research that would support long-term antibiotic treatment (the guidelines cite more than 400 studies). "Our question basically is whether the guidelines were formulated through a process that was proper, without self- interest or conflicts of interest," Blumenthal says, noting that some of the panel members have financial interests in treatments and vaccines. Blumenthal also worries that the new guidelines might be used by insurance companies looking to avoid paying for Lyme drugs. The investigation is at "an important juncture," he says.
Meanwhile, Wormser is baffled. "How could the interests of the patient be served by treating with unnecessary and potentially dangerous therapies?" he says. "The guidelines represent the best that medical science has to offer." The question, then, is whether that's good enough. � 2007 Newsweek, Inc.
Posted by Lymeblue (Member # 6897) on :
Good idea to send online comments on this one ASAP.
Posted by bettyg (Member # 6147) on :
reformatting for us neuro lymies to read/comprehend!
Patients ache as doctors disagree about whether there is a chronic form of the tick-borne malady.
By Mary Carmichael Newsweek
Aug. 6, 2007 issue -
There's a debate raging over Lyme disease, although you'd never know it unless you've been paying close attention--because on the surface it sounds like the dullest argument imaginable.
Last year, the Infectious Diseases Society of America issued new guidelines saying physicians should treat Lyme with antibiotics for no longer than 30 days. Some docs think that's wrong.
It's a seemingly straightforward difference of opinion. So why has the debate dissolved into animosity, with one side suggesting that its opponents have no credibility and the other slinging deeply personal insults on the Web ?
And why has it now spilled out of medical journals and into the office of a state attorney general?
Clearly, something other than ticks is bugging a lot of doctors.
Lyme disease--the most common insect-borne ailment in America, with roughly 20,000 cases diagnosed each year and more undetected--is transmitted mostly by a well-known pest, the deer tick.
But the real culprit is something even nastier, a bacterium called Borrelia burgdorferi that lives in the tick's gut.
When Borrelia infiltrates the human body, it can cause a suite of distinctive symptoms, most notably a flulike feeling and a red rash like a bull's-eye.
Sometimes, though, it causes no symptoms at all, and that's more dangerous, because the early signs are the only warnings doctors have. If Lyme is left undiagnosed and untreated, its consequences can be serious, including arthritis, meningitis, heart problems and inflammation of the brain.
"The real secret," says Dr. Michael Zimring, director of the Center for Wilderness and Travel Medicine at Mercy Medical Center in Baltimore, "is to be able to recognize the disease early enough."
Zimring would know. Several years ago his wife felt fluish and came down with an oval-shaped rash. Zimring wasn't sure what she had, but "knowing our backyard is loaded with ticks was enough," he says.
He started his wife right away on one of the classic, effective antibiotics used to treat Lyme. When her medical tests came back, they proved him right. "I treated her for three weeks," he says, "and that was it. No problem."
Unfortunately, not all Lyme patients recover so easily. And that's what's at the heart of the debate--some docs think patients who are treated inadequately can develop a chronic form of the disease, while others deny that it's possible.
Dr. Rafael Stricker, president of the International Lyme and Associated Diseases Society, believes in "chronic Lyme disease," and he says that in his clinical experience about 70 percent of patients with it get better if they're treated long term with the same drugs used to treat early infection.
But the doctors who made the new IDSA guidelines on treatment say there's no such thing as chronic Lyme, because in most patients who complain of it, Borrelia isn't detectable in the body.
Dr. Gary Wormser, who chaired the IDSA panel, prefers the term "post-Lyme syndrome."
Treating that syndrome with high-dose antibiotics for months -- as some physicians did before the new guidelines -- can only hurt patients, he says.
It can give them gallstones and infections and lead to antibiotic resistance while not curing anything. "The majority of patients treated for 'chronic Lyme' do not have post-Lyme," he says, "and in fact never, ever had Lyme disease ."
This does not sit well with thousands of patients who believe they do have chronic Lyme and badly want antibiotic treatment for it.
"The IDSA is basically saying to them, 'We're right, you're wrong, we don't want to listen to you, just take some antidepressants and go away'," says Stricker.
The IDSA is a highly respected group of doctors. But it's facing formidable opposition, not just from Stricker's group ( and angry patients who've taken to Internet message boards).
but also from the attorney general's office in Connecticut, the state with the country's highest incidence of Lyme disease. A.G. Richard Blumenthal has launched an investigation of the IDSA panel, looking into whether it ignored any research that would support long-term antibiotic treatment (the guidelines cite more than 400 studies).
"Our question basically is whether the guidelines were formulated through a process that was proper, without self-interest or conflicts of interest," Blumenthal says, noting that some of the panel members have financial interests in treatments and vaccines .
Blumenthal also worries that the new guidelines might be used by insurance companies looking to avoid paying for Lyme drugs.
The investigation is at "an important juncture," he says.
Meanwhile, Wormser is baffled. "How could the interests of the patient be served by treating with unnecessary and potentially dangerous therapies?" he says .
" The guidelines represent the best that medical science has to offer ." The question, then, is whether that's good enough.
� 2007 Newsweek, Inc.
Posted by Robin123 (Member # 9197) on :
In response to the Newsweek article, we can mention that 400 medical studies out of 18,000 published equals 2%.
Posted by Geneal (Member # 10375) on :
And so the saga continues.....
Unfortunately, time and time again, you never see
Any specific reference to those of us who never saw a tick, never had the classic EM rash,
And have probably been harboring this disease for years.
Add the significant amount of misdiagnosis and mis-treatment and what do you get???
Chronic Lyme disease.
I wish I had seen the tick......I wish I had a rash.
Then, maybe the 30 days of antibiotics would have worked....
But then wait.....no mention of co-infections, which the majority of us have.
We know co-infections make the road to getting well or in remission even harder to traverse.
I like the mention of all of the patients treated that didn't actually have Lyme disease....
Who determined that? By what means? Serologically?
We know that is a joke too.
Tissue biopsy?
No wait, the "magic" crystal ball approach. I don't believe in chronic Lyme,
therefore you can't have it.
Just my humble opinion.....
Hugs,
Geneal
Posted by mjo (Member # 7876) on :
Wish she'd mentioned IDSA financial interests in tests too. The more lousy the tests they sell and promote the more they can sell the lousy tests.
Posted by Carol in PA (Member # 5338) on :
At the bottom of the Newsweek article, you can "rate" it, one to five stars. I think you can rate it every day, if you go to the site.
I think we need to get this article read and rated more. Some of the dumb articles get TONS of votes.
At the bottom of the page, you can click on a link to read all comments. There are zero comments at this time.
Carol
p.s. Okay, I just checked. The Lyme article has been rated 43 times. The article about "Fast Times at Ridgemont High" has been rated 112 times.
Posted by bettyg (Member # 6147) on :
it was 45 now; i voted again; refreshed board, and it still shows 45!
Posted by EWT1638 (Member # 11315) on :
I rated, I commented. Let's see if they display it!
Posted by kam (Member # 3410) on :
Typed out a lengthy comment and then was given an error message to contact web site admin which I did.
Did not see any comments posted from others.
Wondering if others are having the same problem.
Will send letter to editor instead.
Posted by bettyg (Member # 6147) on :
someone else sent this to me by regular email; VOTE IS NOW 65!
i saw NO messages! but maybe i'm looking in wrong place.
KEEP VOTING FOR THAN ONCE!! EACH TIME YOU SEE THIS THREAD UP OK! we want to set a NEW record ! Posted by Anneke (Member # 7939) on :
I wrote a long comment, and it's nowhere to be found! Frustrating! I spent a lot of time on it!
I just checked the site and it says O comments.
Posted by painted turtle (Member # 7801) on :
I just wrote out a great comment....
AAAAAAAAARRRRGGHHHH!!!!!
Spent time with it, not there at all...... Sheesh.
Posted by Carol in PA (Member # 5338) on :
You can contact the magazine about the website at:
p.p.s. To rate the article, click on the fifth star.
"Lyme Debate" was rated by 85 users. "Fast Times at Ridgemont High" was rated by 170 users.
[ 01. August 2007, 01:36 AM: Message edited by: Carol in PA ]
Posted by mojo (Member # 9309) on :
Wormser baffled? What a concept!
I can't seem to vote. Can someone help a lyme brain like me? I know I've done this before it's jut not "taking" it and the number stays at 74
Posted by Lymeblue (Member # 6897) on :
OK now is working !! keep posting your comments. The first was posted a t 9 pm.
Posted by mojo (Member # 9309) on :
I went on my other computer and still can't "rate" the article but my post is in there!
I registered, logged in and put in my comment.
It still says 0 comments but when I click on read all comments it's there.
Posted by elle108 (Member # 11730) on :
I couldn't leave a comment either...seems the link dooesn't work. ARRRGH
Posted by Robin123 (Member # 9197) on :
Me neither -- I couldn't figure out how to get a comment done. So I've sent a short letter to the editor.
Posted by mojo (Member # 9309) on :
How strange is this? I still can't "rate" the article but I was able to post a comment last night and nobody else seems to be able to???
Posted by JimMet (Member # 7787) on :
I just read this article in my copy of Newsweek and was going to start a thread on it when I found that this one was already started. I think the article was well-written, summing up the debate in only one page and doing so without taking sides.
Posted by Robin123 (Member # 9197) on :
So where do we look on the site to send a comment?
Posted by RoadRunner (Member # 380) on :
We all should be writing to them and telling them our view or story.
this is our chance to tell the truth.
RR
Posted by Robin123 (Member # 9197) on :
I clicked on Help at the bottom of the page, then sent comments to [email protected] -- I hope that was the right place to do so.
Posted by Carol in PA (Member # 5338) on :
This article has been rated 145 times now.
If you want to post a comment, go down to the bottom of the page, and click on "comment on this story."
There are eight comments at this point.
I know we have many articulate people on LymeNet. Last year's Lyme story got some fabulous letters from LymeNet members, several of which were printed in the magazine.
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