Lyme disease debate surges
Insurance, more study urged for chronic variety
By Claire Hughes
Updated 6:54 am, Saturday, May 11, 2013
- Worldwide Lyme Disease Awareness Rally was held at the West Park of the Capitol on Friday May 10, 2013 in Albany, N.Y. (Michael P. Farrell/Times Union)
As increasing numbers of Capital Region residents are infected with Lyme disease, a decades-old controversy over how to diagnose and treat people with chronic symptoms is also escalating.
"Everyone agrees that (patients) are ill," said Dr. Richard Horowitz of Hyde Park. "What they can't agree upon is why they're ill."
There's no disputing that reported cases of Lyme disease are up in the Capital Region. Latest figures from the state Department of Health, from 2011, show Rensselaer and Saratoga counties vying for top positions statewide.
Rensselaer County had 656 cases; Saratoga County, 525. Only Orange County had more, at 953.
The reason? The bacteria that causes Lyme disease is creeping northward, carried by infected ticks. Columbia County had been the epicenter of the disease in recent years; before that it was the lower Hudson Valley and Long Island.
So to stay healthy, be alert outdoors: Deer ticks as small as a pinhead lurk in shady areas. If you get bit and detect symptoms early, you have a good chance of being completely cured with antibiotics, experts say.
Serious complications like meningitis, arthritis and heart problems can set in when treatment is delayed, said Dr. Alan Sanders, an infectious disease specialist in Albany.
"We'll see people who end up getting hospitalized," he said.
As daunting as the statistics are, some people suffering with long-term Lyme symptoms say the numbers represent only a fraction of patients.
"The way Lyme disease is officially defined is the acute form of the illness only," said Holly Ahern, a microbiologist at SUNY Adirondack.
Ahern was among activists at the state Capitol on Friday because they say health officials and the medical establishment are not adequately addressing chronic Lyme.
They demanded insurance coverage for chronic Lyme and funding for research on unconventional methods for diagnosis and treatment.
"We need people to fund broader-based research — not just the same few people, same few academic institutions," said Christina Fisk of the Lyme Action Network, a group of patients and families in Saratoga and Warren counties.
Their argument is part of an emotionally charged conflict dividing medical experts.
"We're in a deadlock of two groups who are fighting," said Horowitz, who has treated patients for long-term Lyme symptoms for 27 years.
Members of the Lyme Action Network and similar groups statewide believe Lyme disease can linger in the body, causing chronic problems for years. Some doctors, including the nation's most influential infectious disease medical group, do not acknowledge chronic Lyme.
The textbook sign of Lyme is a bull's-eye rash near the site of a tick bite. According to the CDC, 70 to 80 percent of people with Lyme disease develop this mark, but Ahern said some studies show a bull's-eye rash may occur in fewer than 10 percent of people who contract Lyme.
Ahern refers to Lyme patients who get bull's-eye rashes as "lucky winners." Her daughter was not one of them. She was bitten by a tick at 13, but had no rash. Three years later, she was oddly lethargic. At a friend's recommendation, Ahern brought her for a blood test, which came out positive for Lyme. After treatments with antibiotics, a whole-food diet and vitamins, her daughter is better, but not completely well, Ahern said.
Lingering Lyme symptoms may set in when people are not diagnosed early, Horowitz said. Their immune systems become compromised, they contract other illnesses and eventually end up in a doctor's office. He has proposed the designation Lyme Multiple Systemic Infectious Disease Syndrome (MSIDS) for people suffering from the long-term effects of the disease and co-infections.
He urges patients to look for symptoms other than a rash: joint pain, muscle pain, nerve pain or numbness, and especially a tingling burning sensation that moves around the body. And he suggests they actively ask doctors for blood tests that detect Lyme.
"Everyone agrees that (patients) are ill," said Dr. Richard Horowitz of Hyde Park. "What they can't agree upon is why they're ill."
There's no disputing that reported cases of Lyme disease are up in the Capital Region. Latest figures from the state Department of Health, from 2011, show Rensselaer and Saratoga counties vying for top positions statewide.
Rensselaer County had 656 cases; Saratoga County, 525. Only Orange County had more, at 953.
The reason? The bacteria that causes Lyme disease is creeping northward, carried by infected ticks. Columbia County had been the epicenter of the disease in recent years; before that it was the lower Hudson Valley and Long Island.
So to stay healthy, be alert outdoors: Deer ticks as small as a pinhead lurk in shady areas. If you get bit and detect symptoms early, you have a good chance of being completely cured with antibiotics, experts say.
Serious complications like meningitis, arthritis and heart problems can set in when treatment is delayed, said Dr. Alan Sanders, an infectious disease specialist in Albany.
"We'll see people who end up getting hospitalized," he said.
As daunting as the statistics are, some people suffering with long-term Lyme symptoms say the numbers represent only a fraction of patients.
"The way Lyme disease is officially defined is the acute form of the illness only," said Holly Ahern, a microbiologist at SUNY Adirondack.
Ahern was among activists at the state Capitol on Friday because they say health officials and the medical establishment are not adequately addressing chronic Lyme.
They demanded insurance coverage for chronic Lyme and funding for research on unconventional methods for diagnosis and treatment.
"We need people to fund broader-based research — not just the same few people, same few academic institutions," said Christina Fisk of the Lyme Action Network, a group of patients and families in Saratoga and Warren counties.
Their argument is part of an emotionally charged conflict dividing medical experts.
"We're in a deadlock of two groups who are fighting," said Horowitz, who has treated patients for long-term Lyme symptoms for 27 years.
Members of the Lyme Action Network and similar groups statewide believe Lyme disease can linger in the body, causing chronic problems for years. Some doctors, including the nation's most influential infectious disease medical group, do not acknowledge chronic Lyme.
The textbook sign of Lyme is a bull's-eye rash near the site of a tick bite. According to the CDC, 70 to 80 percent of people with Lyme disease develop this mark, but Ahern said some studies show a bull's-eye rash may occur in fewer than 10 percent of people who contract Lyme.
Ahern refers to Lyme patients who get bull's-eye rashes as "lucky winners." Her daughter was not one of them. She was bitten by a tick at 13, but had no rash. Three years later, she was oddly lethargic. At a friend's recommendation, Ahern brought her for a blood test, which came out positive for Lyme. After treatments with antibiotics, a whole-food diet and vitamins, her daughter is better, but not completely well, Ahern said.
Lingering Lyme symptoms may set in when people are not diagnosed early, Horowitz said. Their immune systems become compromised, they contract other illnesses and eventually end up in a doctor's office. He has proposed the designation Lyme Multiple Systemic Infectious Disease Syndrome (MSIDS) for people suffering from the long-term effects of the disease and co-infections.
He urges patients to look for symptoms other than a rash: joint pain, muscle pain, nerve pain or numbness, and especially a tingling burning sensation that moves around the body. And he suggests they actively ask doctors for blood tests that detect Lyme.
Read more: http://www.timesunion.com/local/article/Lyme-disease-debate-surges-4507216.php#ixzz2T06GZjzF
2011
Albany 364
Columbia 355
Greene 310
Rensselaer 656
Saratoga 525
Schenectady 79
2010
Albany 466
Columbia 384
Greene 253
Rensselaer 323
Saratoga 293
Schenectady 58
2009
Albany 638
Columbia 572
Greene 402
Rensselaer 440
Saratoga 407
Schenectady 131
Source: New York State Department of Health
Read more: http://www.timesunion.com/local/article/Lyme-disease-debate-surges-4507216.php#ixzz2T0F2gBtU
