The Infectious Diseases Society of America is joining other medical associations for a conference at the Moscone Center from Wednesday to Sunday. At the same time, advocacy groups who want the IDSA to broaden Lyme disease diagnosis and treatment guidelines are planning their own events.
At issue are the effectiveness of the disease’s treatment cycle and requirements for positive diagnoses.
The IDSA guidelines, which are used by the federal Centers for Disease Control and Prevention and used by insurance companies to decide whether to pay for treatment, recommend 28 days of antibiotics. And to be diagnosed, a specific type of rash associated with the early form of the bacterial infection or a positive blood test is needed.
Many patients and advocates say the guidelines are too definitive for a condition that is difficult to diagnose.
And CDC research published last month estimating the disease is 10 times more common than previously thought — with approximately 300,000 cases per year nationally — is adding fuel to the controversy.
Lyme disease is spread by the western black-legged tick, present throughout California but with high concentrations in the Bay Area and northeastern Sierra Nevada. Lyme-causing bacteria initially create flu-like symptoms and a bull’s-eye-shaped rash in most cases. As they spread, the bacteria can attack the brain, eyes, nerves, joints and heart, leading to debilitating pain and neurological symptoms in some patients.
“The controversy is basically centered around the question of whether or not ‘chronic’ Lyme disease exists,” said Dr. David Margolius, a resident in internal medicine at UC San Francisco. The IDSA has not recognized that Lyme disease bacteria can live through the 28-day treatment and instead calls lingering symptoms “post-treatment Lyme disease syndrome.”
The organization reaffirmed its treatment guidelines in 2010, maintaining that long-term antibiotics are no more effective than placebos and are risky.
Under the Affordable Care Act set to take effect Jan. 1, Lyme disease patients won’t be denied insurance coverage because they have a pre-existing condition, but insurers can still rely on CDC guidelines regarding payment for antibiotic treatment beyond 28 days.
Margolius said a growing national movement of patients and advocates, led by the International Lyme and Associated Diseases Society, wants doctors to do what seems to make sense — treat people until they feel better.
But years of antibiotics can be “incredibly dangerous,” Margolius said. The IDSA cites concerns about bacteria developing immunities to antibiotics and becoming “super bugs.”
David Roth, who co-founded the Tick-Borne Disease Alliance after his own Lyme disease diagnosis, said his yearlong treatment brought his health back to 85 percent of what it was. However, his insurance would not cover it.
“I have the financial wherewithal to seek out and pay for treatment,” he said. “Many people do not.”
The Tick-Borne Disease Alliance launched a national campaign from San Francisco this week to spread awareness and get funding for Lyme disease research. John Donnally, who was twice diagnosed with Lyme, began a cross-country bicycle trip from the Golden Gate Bridge on Sunday. He is trying to raise $50,000 for the cause.
Roth, like others who think the IDSA guidelines should change, said he isn’t advocating for long-term antibiotics for every patient. But he said the current guidelines are far too definitive.
The government’s position, according to Roth, is that 28 days of antibiotics are enough to classify patients as cured, even if they suffered from the disease for years before being diagnosed and still have symptoms after the treatment.
California-based LymeDisease.org also thinks the guidelines need to be changed. The group — which is planning a protest outside the Moscone Center conference Saturday — said the IDSA should give patients and their doctors the choice to continue antibiotics beyond 28 days.
Some physicians will prescribe more antibiotics, according to group spokeswoman Dorothy Leland, but it can be difficult to get insurance to cover costs.
“It’s a complex situation,” said Leland, a Davis resident. “People deserve to be properly diagnosed if that’s possible. They deserve to have a range of treatments available.”
Leland said her daughter contracted Lyme disease at 13 years old, and arriving at a diagnosis took time. Her daughter spent a total of three years in a wheelchair, but now the 21-year-old is walking and attending college.
“To me, that’s a miracle,” Leland said. “And it wouldn’t have happened had we followed the IDSA guidelines.”
Leland said several years of antibiotics were part of a package of treatment that has alleviated some of her daughter’s symptoms. The family also incorporated alternative medicine, like chiropractor sessions.
Margolius said alternative treatments to manage chronic pain can be a positive approach for people who believe they’re suffering from long-term Lyme disease.
“Antibiotics are probably not going to solve their problem, and unfortunately in medicine that’s often the only thing we’re able to offer people,” he said.
Cases reported statewide:
Cases reported in San Francisco:
Note: These numbers, the most current available, are based on where the cases were reported, not necessarily where the disease was contracted.
Source: California Department of Public Health