Lyme Disease for Life?
For some, the tick-borne illness spells long-term symptoms.
Aug. 28, 2007 — -- Aching, inflamed joints. Memory loss. Mood changes.
For an estimated 20,000 Americans each year, the symptoms above culminate in a diagnosis of Lyme disease -- an inflammatory bacterial illness transmitted by the bite of a deer tick.
Fortunately for the vast majority of Lyme disease sufferers, two to four weeks worth of antibiotic therapy is enough to spur a total recovery from the illness.
But a very small number of patients report a much more serious struggle with the illness.
Brooke Landau, a traffic reporter for the ABC News affiliate KGTV in San Diego, was one of these patients.
"I literally went to bed fine one night and woke up unable to move from the waist down and the neck up and had no idea why," she told ABC's "Good Morning America."
By the time Landau was diagnosed, she said the disease had taken a toll on her hearing, her eyesight -- and it had infected nearly every organ in her body.
When conventional treatments didn't work, her condition led her to an experimental therapy, one not approved by the Food and Drug Administration.
The treatment involved pumping high doses of antibiotics directly into her heart, 24 hours a day for two months. She also underwent 30 days of treatment in a hyperbaric oxygen chamber.
For Landau, the treatment may have worked; she recently received her first negative test results for the bacteria in a decade.
But the very existence of such unapproved treatments for the disease has opened an ideological gulf when it comes to treating patients who, unlike Landau, went through conventional therapy for Lyme disease, only to report that they still suffer its effects years afterward.
On one side are physicians and other practitioners who support approaches including extended courses of antibiotics.
And on the other are the majority of Lyme disease experts, who tend to discredit the long-term continuation of the disease after a normal course of therapy. Dr. John Halperin, chair of the Department of Neurosciences at Overlook Hospital in Summit, N.J., is one such expert.
"Some have referred to patients who have persistent but nonspecific symptoms following appropriate treatment for Lyme disease, as having 'chronic Lyme disease,'" Halperin said. "There is no scientific evidence that these patients are still infected, or that prolonged antibiotic therapy or other treatments are helpful in these individuals.
"There are now multiple studies showing that long-term antibiotics offer no benefit to these patients but carry significant risk."
Dr. Jonathan A. Edlow, vice chair of the Department of Emergency Medicine at Beth Israel Deaconess Medical Center in Boston, and author of "Bull's Eye -- Unraveling the Medical Mystery of Lyme," agrees.
"The evidence base in the peer-reviewed medical literature... for long-term antitibiotics is meager," Edlow said. "However some believe -- in the absence of high quality evidence, that long-term antibiotics are useful."
Acute Lyme vs. Chronic Lyme
By the time most people learned that President Bush had been treated for an acute case of Lyme disease, the diagnosis was little more than a footnote in his medical records.
Like Bush, most of those who are exposed to Borrelia burgdorferi, the bacterial culprit of the disease, are never at any grave health risk.
However, only about 30 percent of those infected get the obvious signs of Lyme: a bulls-eye rash and flu-like symptoms.
Absent these symptoms, the infection can remain in the body. And if it remains undetected, it may lead to chronic, or tertiary, Lyme disease. Symptoms may include skin, neurological, and musculoskeletal problems, according to the National Institutes of Health.
Within this breadth of symptoms lies part of the problem. Dr. Gary Wormser, lead author of the Lyme disease treatment guidelines offered by the Infectious Disease Society of America (IDSA) in Washington, D.C., said many people with these symptoms assume they have Lyme disease, even when they may not.
"The fact is that there are many patients who are suffering from unexplained or poorly understood conditions associated with fatigue or musculoskeletal pains," Wormser said. "Many feel abandoned by conventional medicine and are desperately seeking help from somewhere. They are especially vulnerable to those who profess to have the answer even if they do not."
The Persistence of Lyme
There are a few reasons why Lyme disease, caught early, may still not completely resolve after treatment.
Some patients who receive FDA-accepted antibiotic regimens for Lyme disease will still experience symptoms -- a condition often referred to as post Lyme syndrome, or PLS.
"After treatment and resolution of well-recognized objective manifestations of Lyme disease, such as the Lyme rash, those patients who were initially highly symptomatic with pains or fatigue often take weeks to months to recover fully," Wormser said, adding that up to 25 percent of those suffering from Lyme disease still experience mild symptoms in the three months following a 14-day course of antibiotics.
Edlow adds that there are a number of other reasons that the symptoms of the disease may not resolve completely. He said that in theory, remnants of the bacterial population could still be living somewhere in the body. Patients may be infected with another tick-borne disease in addition to Lyme. And it is even possible that the infection caused permanent tissue damage, or that Lyme disease set off another illness.
Regardless, current guidelines by IDSA, the American Academy of Neurology and other leading professional organizations state that there is no compelling evidence to support more than four weeks of standard antibiotic therapy.
Protecting Yourself from Lyme Disease
Fortunately, adhering to some relatively simple tips can dramatically lower the chances that you will ever have to deal with Lyme disease.
Wearing the proper clothing -- long pants, long socks and a long-sleeved shirt -- when walking through brush or tall grass can thwart the ticks that carry the disease. Performing body checks after such excursions also lessens the chances of infection.
Tests for Lyme disease are reasonably accurate in patients who have had infection for more than a few weeks -- the time required for the body to produce a sufficient immune response for doctors to detect the disease.
It's a small price to pay to avoid a potentially serious situation -- such as the one Landau experienced firsthand.
"There's not a second in my day where I am not in pain," she said. "I just push through it, but I hope to God it's not another 50, 60 years with this kind of pain."
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