Concern over the growing threat of tick-borne illnesses has prompted state leaders to announce a new, aggressive tick control plan and hold a Lyme disease summit this summer.
Gov. Andrew Cuomo also announced plans to raise awareness about the dangers of these diseases, particularly among hunters and hikers – two groups most likely to encounter ticks – and reduce tick numbers in the Capital, Hudson Valley, and Southern Tier regions, where state officials say residents and travelers are at the highest risk of tick exposure and Lyme disease.
Rebecca Roll, of West Seneca, welcomed the greater emphasis. She helped found the Lyme Support Group of Western New York two years ago after her husband, Chuk, came down with a chronic form of the disease.
Roll maintains many doctors in the region are underprepared when it comes to addressing Lyme disease, particularly the thorniest cases.
"If you have cancer, you go to Roswell," she said. "If you have MS, you go to Dent Neurologic Services. If you have Lyme disease, you come to a Lyme Western New York meeting. That's what it's come down to."
The blacklegged tick, sometimes called the deer tick, can carry Lyme and similar diseases. Symptoms can include severe headaches, joint pain and swelling, fainting spells, heart palpitations and the flu. A ring-rash is the biggest tell-tale sign, though a large percentage of those who contract Lyme disease never get one, Roll said.
Dr. Thomas Russo is professor and chief of infectious diseases in the University at Buffalo Jacobs School of Medicine & Biomedical Sciences. He declined an interview request but said by email that doctors in the region follow the diagnosis protocol recommended by the federal Centers for Disease Control and Prevention.
Established protocol tells doctors that Lyme disease can be treated and resolved with antibiotics given over 28 days – but there is disagreement.
One medical society, the Infectious Diseases Society of America (IDSA), regards Lyme disease as “hard to catch and easy to cure” with a short course of antibiotics, according to lymedisease.org. This society denies the existence of chronic Lyme disease.
In contrast, the International Lyme and Associated Diseases Society (ILADS), regards Lyme disease as often hard to diagnose and treat, and points out that "coinfections" of other tick-borne bacteria and parasites often complicate treatment.
“The quality of life of patients with chronic Lyme disease is similar to that of patients with congestive heart failure,” according to lymedisease.org. “Doctors don’t agree about the cause of these ongoing symptoms. The primary cause of this debate is flawed diagnostic testing. There is currently no test that can determine whether a patient has active infection or whether the infection has been eradicated by treatment.”
The CDC reported earlier this month that the number of Lyme disease cases has tripled across the U.S. from 2004 to 2016.
There were 765 cases of Lyme disease reported in the nine counties of Western New York from 2000 to 2015; the numbers have grown over time but remain lower than in some eastern portions of the state, according to the CDC.
Monroe and Erie counties reported 350 and 174, respectively, much larger than the counties near them.
The CDC says that roughly 30,000 cases are reported across the nation annually – but the agency estimates the actual number of cases at 10 times that, maybe more. New York and Pennsylvania account for about half of reported cases. Cases also are more common in parts of New England and the Midwest.
Dr. Kevin Stephan, an infectious disease specialist in Duluth, Minn., told the Grand Forks Herald earlier this month that about 2 percent of female blacklegged ticks – the major carrier – harbored Lyme disease in that region 15 years ago, when he started to work there. Now, he told the newspaper, 30 percent to 50 percent of female ticks in some areas of his region are infected.
Many scientists studying the rising numbers believe global warming may help explain the rising number of cases.
Cases should be reported to state health officials, but Roll said many people who've attended support group meetings say they doubt that happens after they've watched doctors in the region throw away ticks after they've removed them during office visits.
The group this month partnered with a Colorado company, Ticknology (Ticknology.org), which for $25 will test a removed tick. The company will inform the individual who pays for the testing, as well as Lyme WNY (facebook.com/LymeWNY), if the insect carried Lyme disease.
"We're doing the kind of surveillance the health department should be doing," Roll said. "Eventually, we hope to start mapping out where these ticks were found … to provide the information to the public."
The state Health Department has done many tick collection initiatives and public information campaigns over the years, an agency spokeswoman said.
Most doctors in Western New York have yet to see severe cases in which Lyme disease has festered, causing crippling results, after its symptoms have been misdiagnosed as other "invisible illnesses," including multiple sclerosis, arthritis or lupus, she added.
Doctors have viewed the idea of chronic Lyme disease with skepticism, she said, so patients have been forced to seek treatment in eastern New York State and parts of Pennsylvania, where cases are more common.
"It's the same story every month" in support meetings, Roll said. "We've heard it so many times. It's frustrating. It's sad. It has completely destroyed lives. We have people who can't even come to the meetings because they're so sick, who are stuck in bed, who are in wheelchairs, who are depressed."
Five people attended the first Lyme WNY support group meeting in 2016; roughly 25 have attended recent meetings, including several newcomers each time, Roll said. Meetings are held at 6 p.m. the second Wednesday of each month at East Seneca Fire Hall, 100 Lein Road, West Seneca.
Her husband – a landscape company owner who has had far fewer flare-ups since receiving treatment from a specialist in Pennsylvania – now wears long pants, long-sleeve shirts and a hat while at work or on a hike. He also uses proper spray repellents, and checks for ticks daily.
Humans will never get rid of the deer, mice, birds and ticks that carry Lyme disease and associated illnesses, Roll said, "but we can educate and we can prevent."
PREVENT TICK-BORN ILLNESSES
The New York State Health Department recommends the following when hiking, working or spending time in wooded areas:
- Wear long pants and long-sleeved shirts to protect against ticks other biting insects.
- Check for ticks every two to three hours while outdoors and brush off any ticks before they attach.
- Perform a full body check multiple times during the day, as well as at the end of the day to ensure that no ticks are attached.
- Use repellents containing DEET, picaridin, or IR3535; follow label instructions.
For more information about Lyme disease and other tick-borne diseases, visit health.ny.gov/diseases/communicable/lyme.
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