Advocacy group considers new Lyme research 'groundbreaking'
Lyme disease and chronic fatigue syndrome often seem like similar illnesses, but scientists have discovered that proteins in spinal fluid could help distinguish between the two, leading to better diagnosis and treatment.
Even after they are treated with antibiotics for Lyme disease, some people report lingering symptoms that include fatigue, memory loss and pain, which are similar to the symptoms associated with chronic fatigue syndrome.
In a study that was partially funded by Greenwich-based Time for Lyme, researchers examined spinal fluid samples of patients with post-treatment Lyme disease and chronic fatigue syndrome, as well as healthy volunteers. They found hundreds of unique proteins in each group of patients.
The study, led by Dr. Steven Schutzer of the University of Medicine and Dentistry of New Jersey-New Jersey Medical School and Dr. Thomas Angel of the Pacific Northwest National Laboratory, in the Feb. 23 issue of PLoS One.
Officials from Time for Lyme, which advocates for better research into and treatment of the tick-borne illness, consider the study groundbreaking.
"This is important on several levels, the first being ... that obviously something is going on with these patients, obviously it's not all in their heads" said Dr. Harriet Kotsoris, Time for Lyme's medical director. "Chronic fatigue syndrome is not same as Lyme. In this day and age, doctors lump it all together."
Schutzer said researchers knew that both conditions were perplexing to physicians because they shared nonspecific symptoms. They also believed it was likely that spinal fluid would contain material that reflects what is going on in the central nervous system.
Kotsoris said the current test for Lyme, which looks for the presence of the antibody, not the bacteria, is not reliable. The research could help bring about better diagnostic tools.
"They have to keep testing, see if proteins keep coming up," Kotsoris said. "If that's the case, you've got a good test there. Once they see what abnormal proteins do, (scientists) can even start working on treatment for these diseases. This is what Time for Lyme talks about all the time."
Schutzer stressed that the study was a good first step, but that more research would need to be done. The next step would be to determine which proteins are the best indicators of each condition, and scientists would need to examine many more samples.
"We're very encouraged, because it shows we're on the right path," Schutzer said.
Greenwich resident Ann Lyons, a Time for Lyme board member who, as vice president of outreach, has attended meetings of the organization's support group, said she's heard of people with Lyme disease commonly being misdiagnosed with chronic fatigue syndrome.
"I think it begins to lay the foundation of separating the two," Lyons said. "Frequently what's difficult for ... well-meaning physicians is there are so many symptoms of chronic Lyme, and fatigue is one of them, and it takes longer than the 15-minute appointment ... to be able to really properly diagnose."
Time for Lyme has been funding research for Lyme and tick-borne diseases since 2002, providing $3 million in research grants over the past decade. The organization will hold its biannual gala at the Hilton Hotel in Stamford on April 2.
Ally Hilfiger, the 26-year-old daughter of fashion designer and Greenwich resident Tommy Hilfiger, will be honored at the event for her work speaking about the obstacles faced by people diagnosed with Lyme. Hilfiger was reportedly misdiagnosed during her own 19-year battle with the disease.
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