Sen. Serino organized the panel presentation
HOPEWELL JUNCTION – The Mid-Hudson Valley is ground zero for Lyme
disease and a panel of experts was assembled Monday evening at John Jay
High School in Hopewell Junction to brief the public about the disease,
how to prevent it and how to detect it.
State Senator Susan Serino (R, Hyde Park) and a panel of experts from her advisory board on Lyme and tick borne illness, informed the attendees of a new, game changing, diagnostic test for Lyme bacteria.
Residents of Upstate New York are no strangers to the widespread occupation of ticks in the area, many of which carry the spirochete bacterium Borrelia Burgdorferi, known to be the causative agent in Lyme disease. However, what they may be strangers to is the ineffectiveness of the current Lyme test.
Jill Auerbach, co-chair of Serino’s advisory board on Lyme and tick borne illness, said the current Lyme test is an indirect one and is not indicative of the presence of the actual disease causing bacteria.
“We need an accurate test, desperately need an accurate test that can determine who has current, active disease,” said Auerbach. “The test that we have right now only tests for your body’s reaction; in other words, building antibodies against the pathogen, and not everybody builds antibodies well: our immune systems are all different. So, the test is not really all that reliable and certainly, early on, it’s totally unreliable. Even the CDC says it’s unreliable.”
The ineffectiveness of the current test has produced a lot of suffering to people in the region, not only because the test can often show false-negative for Lyme, but because the uncertainty, many times, leads insurance companies to not provide necessary coverage since they cannot pay out based on speculation, and also makes doctors afraid to support diagnoses that are not backed by evidence from testing.
Charles McClaude of East Fishkill had to battle his insurance company for months because his specialist would not acknowledge his Lyme since the test showed him as being negative.
“From a clinical standpoint, the diagnosis to me was that I had Neurological Lyme, and my primary care physician agreed with me. She had a consult with the infectious disease specialist,” McClaude said. “I went back to see the infectious disease specialist and the infectious disease specialist felt like it wasn’t, I had a negative blood serum test result. She was only looking at that one piece of empirical data. Well, because you’re negative in the blood, therefore you don’t have it. The insurance company isn’t going to pay for anything more than 28 days of doxycycline. Here’s your 28 days, good luck … and where does that really leave you.”
After battling with his insurance company, McClaude finally found a doctor who would acknowledge his disease, and since then, has been improving via intravenous antibiotics.
Unfortunately, McClaude was not the only local who claimed having this problem, or a similar one; however, thanks to Monday night’s panel, those locals were informed that research on a new test will shine a light on their problems.
Lyme ticks
Holly Ahern, associate professor of microbiology at SUNY Adirondack, said a new test, being developed by the Trans genomics department of the University of Northern Arizona, will finally be able to test for quantities of all Lyme causing pathogens in the patient, not only replacing an ineffective test with an effective one but, also making it less expensive for insurance companies, finally providing them with the incentive to pay.
“They are using next-gen sequencing, so they’re going to go looking for the DNA of the bacteria, and when they find the DNA they’re going to sequence it” said Ahern. “They’re going to find that order, and then what they can do is to take that information and compare it to all known bacteria. You’re going to be able to detect Borrelia Burgdorferi, but also all the other species of Borrelia that research is now showing are, in fact, causing Lyme disease; even though the definition says it’s only Burgdorferi, there are other species of Borrelia that cause it. This test will allow for direct detection of those organisms as well in one single test.”
The panel said those suffering from undiagnosed, or misdiagnosed, Lyme disease can look forward to this test, called Lyme Seek, being available within two years or less.
The panel also suggested to anyone who is having problems with Lyme to attend, or someone able who can, the Lyme Disease Informational Forum at The Desmond hotel in Albany on July 15th. There, the information on the new test and research findings will be discussed more extensively.
