When Lyme Disease Lasts and Lasts
Excerpted from the The New York Times: (07/08/2013)
Chronic Lyme disease is a highly controversial catch-all term for a host of long-lasting symptoms that may or may not stem from prior infection with the bacterium that causes acute Lyme disease. Often misdiagnosed and mistreated, chronic Lyme disease leaves thousands of people physically and mentally debilitated and without a medically established recourse.
Mary Rasenberger, 51, a New York lawyer, experienced “a series of ailments going back 10 years.” She was finally given a diagnosis of chronic Lyme disease last summer after having been told that she had multiple sclerosis.
Her long-term symptoms were “aching joints, headaches and indescribable fatigue” that made her miserable and unable to exercise. In the last few years, two additional symptoms developed: neuropathy in her limbs and face, and vision problems. In an interview, she said she “woke up every day feeling sick”; if she became overheated, she felt as if she had the flu.
Yet a test for Lyme disease came back negative. Desperate, she finally consulted a Lyme “specialist,” one of a number of doctors who treat patients with symptoms like Ms. Rasenberger’s with long-term antibiotics, despite the fact that such a regimen has shown no significant or lasting benefit in controlled clinical trials. These trials involved randomly assigning patients to the antibiotic Rocephin (often administered intravenously) or a placebo, with neither patients nor those evaluating their symptoms aware of who got what.
Still, after several months on antibiotics Ms. Rasenberger, like many similar patients, said she felt “completely healthy for the first time in years.” Each time she tries to stop the medication, her debilitating symptoms return.
Reports like Ms. Rasenberger’s are hardly unusual, and experts now realize that some people who get Lyme disease go on to develop a chronic illness even if their initial infection was promptly diagnosed and correctly treated. Approximately 10 percent to 15 percent of people who are treated for medically documented Lyme disease develop persistent or recurrent symptoms of fatigue, musculoskeletal pain and cognitive complaints.
The condition is known as post-treatment Lyme disease syndrome, or PTLDS. “It is a real disorder, although nobody really knows what’s happening,” Dr. John N. Aucott, an infectious disease specialist in Lutherville, Md., said in an interview.