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Source: http://www.cidrap.umn.edu/news-pers...sults-differing-guidance-all-part-lyme-puzzle
Mistrust, unclear test results, differing guidance all part of Lyme puzzle
Filed Under:
Tick-borne Disease; Antimicrobial Stewardship
Stephanie Soucheray | News Reporter | CIDRAP News
| Aug 26, 2019
Every year, 300,000 Americans are diagnosed as having Lyme disease, caused by Borrelia burgdorferi bacteria and transmitted by a bite from blacklegged ticks. The number of cases has risen each year since the disease was first identified in the mid-1970s in Lyme, Connecticut.
But unlike other diseases, time has not provided crystal clarity in diagnosing the disease nor certainty in treating it. And Lyme has been wreathed in suspicions by patients and an at-times confusing clinical course.
[h=3]Bioweapon conspiracy debunked[/h] This summer the conversation surrounding Lyme reached a new boiling point when a decades-old conspiracy theory?that Lyme was created by the US military as a bioweapon?resurfaced in a new book, Bitten, authored by a women who contracted the disease. In July, Rep Christopher H. Smith, R-N.J., asked Congress to investigate the Department of Defense to see if Lyme disease is the result of a US military experiments.
Though the theory has been widely disputed by experts who have genetic evidence the bacteria predates that claim, its mere suggestion hints at the contentiousness that surrounds Lyme.
Sam R. Telford III, PhD, professor of vector-borne infections and public health at Tufts University, has published several op-eds this summer detailing, in careful terms, just how and why the Lyme as bioweapon conspiracy is fiction.
"The idea is just not tenable," said Telford, who first heard this rumor in the 1980s as a graduate student. "We have papers of population genetic analysis that show the bacteria date back thousands of years."
Moreover, Telford told CIDRAP News, Lyme would be a weak choice as a bioweapon, as it doesn't kill, and the US military also created DEET and permethrin-treated clothing?the best prevention against ticks.
Elizabeth Maloney, MD, president of the nonprofit Partnership for Tick-borne Diseases Education, said she does not believe the conspiracy, but understands why so many patients do.
"When you hear the stories of some of the ways patients with Lyme have been treated, it's no surprise they move towards conspiracy therapies," Maloney said. "When we disrespect patients, this is what happens."
[h=3]When symptoms linger[/h] In about 70% to 80% of Lyme cases, according to the Centers of Disease Control and Prevention (CDC), patients will have a bull's-eye rash known as erythema migrans (EM) and flu-like symptoms in the weeks following a tick bite.
If a clinician sees a rash and the patient notes likely exposure to ticks (through a camping trip, for example) a 2- to 4-week course of doxycycline is prescribed to kill the B burgdorferi bacteria. In patients without a rash, Bell's palsy or a sudden onset of arthritis can point to Lyme, which is confirmed by testing. Those patients also get antibiotics.
For most, this treatment works. But anywhere from 10% to 20% will experience post-treatment Lyme disease syndrome (PTLDS) at least 6 months after treatment, a set of neurologic and pain-related symptoms that confound providers, some of whom believe the bacteria are still causing an infection, and others who believe that the tick bite triggered an immune response.
Still others say the patient isn't experiencing Lyme at all, but a new and as-yet undiagnosed illness unrelated to Lyme.
[h=3]Conflicting treatment guidance[/h] For Paul Auwaerter , MD, professor of medicine at the Johns Hopkins University School of Medicine, the evidence is clear. People with PTLDS do not benefit from more antibiotic prescriptions, despite what the Internet or some Lyme advocacy groups say.
"The evidence is the evidence," said Auwaerter, "The randomized control trials we have are not supportive of more antibiotic use in this group." Moreover, clinicians are growing wary of overusing antibiotics because of both the rise in antibiotic resistance and the potential serious harm to the patient's microbiome.
Auwaerter is one of several authors of the Infectious Diseases Society of America's (IDSA's) new Lyme guidelines, which offer graded recommendations based on available study data. The proposed treatment guidelines are currently open for public comment.
Besides allowing children to now be treated with doxycycline, there's little change to the guidelines since the last update in 2006.
"There's no evidence basis to move the needle," said Auwaerter. "There's lots of opinions from advocates of people that believe they have evidence?but no real evidence."
Maloney disagrees. She helped draft the guidelines put forth by the International Lyme and Associated Diseases Society (ILADS). ILADS allows for a longer course of antibiotics in some Lyme patients. Maloney said IDSA's guidelines are philosophically opposed to ILADS's.
"The two guidelines are saying, 'What's worse?' Withholding antibiotics or giving antibiotics to people who don't need them?" Maloney said. "At ILADS, we'd rather treat infections and run the risk of treating people who don't need it."
[h=3]Lack of reliable testing confounds clinicians[/h] A philosophical disagreement over how to treat PTLDS assumes a lack of consensus on Lyme diagnosis, but recent disagreement over Lyme tests offers another insight into just how hotly debated Lyme is, even among clinicians and researchers who respect each other.
"I use assays, and if the assay is negative, then I repeat it," said Telford. "If it's negative again, then my hypothesis is wrong." While Telford does not dispute PTLDS, he said the insistence on a Lyme diagnosis when tests say otherwise is not a scientific approach.
Lyme is traditionally diagnosed in a two-tier test, which includes an enzyme-linked immunosorbent assay (ELISA), and then confirmation via a Western blot test. ELISA detects antibodies to B burgdorferi, but if used too soon after a tick bite, can provide false results. The Western blot is more subjective, allowing clinicians to test for antibodies against a panel of 10 different proteins found in B burgdorferi. The CDC requires at least 5 positive bands.
In June, the Food and Drug Administration (FDA) approved for use a new two-tier test that does away with the Western blot, and uses two ELISAs to confirm Lyme. Western blot can still be used with the new test, however, if a clinical prefers it. Paul Mead, MD, the chief of the bacterial division of the CDC, said the new test removes subjectivity and may reduce costs.
But data on how well the new test will perform in clinical settings still need to accumulate. Until then, lack of clarity can still be an issue. Maloney offers an example.
"ELISA offers positive or negative binary information," she said. "Western blot allows us to glean information from someone who has exposure history, symptoms, and signs comparable with Lyme and may have 3 or 4 bands. Most clinicians would not hesitate to treat that person for Lyme."
[h=3]Combining science and art[/h] Maloney has said for years that the lack of reliable tests is the biggest impediment to Lyme, and the greatest obstacle on how to uniformly treat the illness. Until testing is better, however, clinicians who treat PTLDS are left to combine art and science.
Laurie Radovsky, MD, treats PTLDS in St. Paul, Minnesota. She has treated Lyme patients for more than 10 years and is used to facing confusing test results.
"I'm willing to believe that Lyme and other tick-borne diseases are really affecting my patients," said Radovsky, who estimate that 60% of her practice is Lyme patients. "But the problem is there are so few actual studies on these patients."
Like Telford and Maloney, Radovsky sees a philosophical question at the heart of treating Lyme.
When faced with a patient who has a history of tick exposure and troublesome symptoms but inconclusive or negative test results, "You can either throw out the traditional paradigm, or your observations," Radovsky said. "I throw out the paradigms."
See also:
Jul 18 Tufts Now article "Lyme bacterium predates the U.S. lab that conspiracy theorists say unleashed ticks on public"
Aug 11 Washington Post Telford commentary "No, Lyme disease is not an escaped military bioweapon, despite what conspiracy theorists say"
IDSA Lyme treatment draft guidelines
ILADS treatment guidelines
CDC PTLDS page
Mistrust, unclear test results, differing guidance all part of Lyme puzzle
Filed Under:
Tick-borne Disease; Antimicrobial Stewardship
Stephanie Soucheray | News Reporter | CIDRAP News
| Aug 26, 2019
Every year, 300,000 Americans are diagnosed as having Lyme disease, caused by Borrelia burgdorferi bacteria and transmitted by a bite from blacklegged ticks. The number of cases has risen each year since the disease was first identified in the mid-1970s in Lyme, Connecticut.
But unlike other diseases, time has not provided crystal clarity in diagnosing the disease nor certainty in treating it. And Lyme has been wreathed in suspicions by patients and an at-times confusing clinical course.
[h=3]Bioweapon conspiracy debunked[/h] This summer the conversation surrounding Lyme reached a new boiling point when a decades-old conspiracy theory?that Lyme was created by the US military as a bioweapon?resurfaced in a new book, Bitten, authored by a women who contracted the disease. In July, Rep Christopher H. Smith, R-N.J., asked Congress to investigate the Department of Defense to see if Lyme disease is the result of a US military experiments.
Though the theory has been widely disputed by experts who have genetic evidence the bacteria predates that claim, its mere suggestion hints at the contentiousness that surrounds Lyme.
Sam R. Telford III, PhD, professor of vector-borne infections and public health at Tufts University, has published several op-eds this summer detailing, in careful terms, just how and why the Lyme as bioweapon conspiracy is fiction.
"The idea is just not tenable," said Telford, who first heard this rumor in the 1980s as a graduate student. "We have papers of population genetic analysis that show the bacteria date back thousands of years."
Moreover, Telford told CIDRAP News, Lyme would be a weak choice as a bioweapon, as it doesn't kill, and the US military also created DEET and permethrin-treated clothing?the best prevention against ticks.
Elizabeth Maloney, MD, president of the nonprofit Partnership for Tick-borne Diseases Education, said she does not believe the conspiracy, but understands why so many patients do.
"When you hear the stories of some of the ways patients with Lyme have been treated, it's no surprise they move towards conspiracy therapies," Maloney said. "When we disrespect patients, this is what happens."
[h=3]When symptoms linger[/h] In about 70% to 80% of Lyme cases, according to the Centers of Disease Control and Prevention (CDC), patients will have a bull's-eye rash known as erythema migrans (EM) and flu-like symptoms in the weeks following a tick bite.
If a clinician sees a rash and the patient notes likely exposure to ticks (through a camping trip, for example) a 2- to 4-week course of doxycycline is prescribed to kill the B burgdorferi bacteria. In patients without a rash, Bell's palsy or a sudden onset of arthritis can point to Lyme, which is confirmed by testing. Those patients also get antibiotics.
For most, this treatment works. But anywhere from 10% to 20% will experience post-treatment Lyme disease syndrome (PTLDS) at least 6 months after treatment, a set of neurologic and pain-related symptoms that confound providers, some of whom believe the bacteria are still causing an infection, and others who believe that the tick bite triggered an immune response.
Still others say the patient isn't experiencing Lyme at all, but a new and as-yet undiagnosed illness unrelated to Lyme.
[h=3]Conflicting treatment guidance[/h] For Paul Auwaerter , MD, professor of medicine at the Johns Hopkins University School of Medicine, the evidence is clear. People with PTLDS do not benefit from more antibiotic prescriptions, despite what the Internet or some Lyme advocacy groups say.
"The evidence is the evidence," said Auwaerter, "The randomized control trials we have are not supportive of more antibiotic use in this group." Moreover, clinicians are growing wary of overusing antibiotics because of both the rise in antibiotic resistance and the potential serious harm to the patient's microbiome.
Auwaerter is one of several authors of the Infectious Diseases Society of America's (IDSA's) new Lyme guidelines, which offer graded recommendations based on available study data. The proposed treatment guidelines are currently open for public comment.
Besides allowing children to now be treated with doxycycline, there's little change to the guidelines since the last update in 2006.
"There's no evidence basis to move the needle," said Auwaerter. "There's lots of opinions from advocates of people that believe they have evidence?but no real evidence."
Maloney disagrees. She helped draft the guidelines put forth by the International Lyme and Associated Diseases Society (ILADS). ILADS allows for a longer course of antibiotics in some Lyme patients. Maloney said IDSA's guidelines are philosophically opposed to ILADS's.
"The two guidelines are saying, 'What's worse?' Withholding antibiotics or giving antibiotics to people who don't need them?" Maloney said. "At ILADS, we'd rather treat infections and run the risk of treating people who don't need it."
[h=3]Lack of reliable testing confounds clinicians[/h] A philosophical disagreement over how to treat PTLDS assumes a lack of consensus on Lyme diagnosis, but recent disagreement over Lyme tests offers another insight into just how hotly debated Lyme is, even among clinicians and researchers who respect each other.
"I use assays, and if the assay is negative, then I repeat it," said Telford. "If it's negative again, then my hypothesis is wrong." While Telford does not dispute PTLDS, he said the insistence on a Lyme diagnosis when tests say otherwise is not a scientific approach.
Lyme is traditionally diagnosed in a two-tier test, which includes an enzyme-linked immunosorbent assay (ELISA), and then confirmation via a Western blot test. ELISA detects antibodies to B burgdorferi, but if used too soon after a tick bite, can provide false results. The Western blot is more subjective, allowing clinicians to test for antibodies against a panel of 10 different proteins found in B burgdorferi. The CDC requires at least 5 positive bands.
In June, the Food and Drug Administration (FDA) approved for use a new two-tier test that does away with the Western blot, and uses two ELISAs to confirm Lyme. Western blot can still be used with the new test, however, if a clinical prefers it. Paul Mead, MD, the chief of the bacterial division of the CDC, said the new test removes subjectivity and may reduce costs.
But data on how well the new test will perform in clinical settings still need to accumulate. Until then, lack of clarity can still be an issue. Maloney offers an example.
"ELISA offers positive or negative binary information," she said. "Western blot allows us to glean information from someone who has exposure history, symptoms, and signs comparable with Lyme and may have 3 or 4 bands. Most clinicians would not hesitate to treat that person for Lyme."
[h=3]Combining science and art[/h] Maloney has said for years that the lack of reliable tests is the biggest impediment to Lyme, and the greatest obstacle on how to uniformly treat the illness. Until testing is better, however, clinicians who treat PTLDS are left to combine art and science.
Laurie Radovsky, MD, treats PTLDS in St. Paul, Minnesota. She has treated Lyme patients for more than 10 years and is used to facing confusing test results.
"I'm willing to believe that Lyme and other tick-borne diseases are really affecting my patients," said Radovsky, who estimate that 60% of her practice is Lyme patients. "But the problem is there are so few actual studies on these patients."
Like Telford and Maloney, Radovsky sees a philosophical question at the heart of treating Lyme.
When faced with a patient who has a history of tick exposure and troublesome symptoms but inconclusive or negative test results, "You can either throw out the traditional paradigm, or your observations," Radovsky said. "I throw out the paradigms."
See also:
Jul 18 Tufts Now article "Lyme bacterium predates the U.S. lab that conspiracy theorists say unleashed ticks on public"
Aug 11 Washington Post Telford commentary "No, Lyme disease is not an escaped military bioweapon, despite what conspiracy theorists say"
IDSA Lyme treatment draft guidelines
ILADS treatment guidelines
CDC PTLDS page