Suffolk Closeup: Expected to be a brutal tick season

May was Lyme Disease Awareness Month in Suffolk County and other areas of the state and nation. May vanished on June 1 but reports are that the tick season ahead of us will be brutal, with a mild winter having allowed for loads of ticks.

Meanwhile, many victims of Lyme disease and other illnesses caused by ticks need long-term health insurance coverage and that remains a huge problem.

To try to deal with it in New York State, Assemblyman Fred W. Thiele Jr. of Sag Harbor has just introduced a bill that would require health insurers to provide long-term medical care for Lyme disease and “other tick-borne related pathogens.”

Meanwhile, under the terms of a county bill, a 14-member Suffolk County Tick and Vector-Borne Diseases Task Force will soon begin meeting to come up with “findings and determinations” and “recommendations for action” on the tick-borne disease front.
Authored by Legislator Edward Romaine of Center Moriches and co-sponsored by Jay Schneiderman of Montauk and Tom Muratore of Ronkonkoma, the bill was developed with the assistance of Eva Haughie, president of the Manorville-based Empire State Lyme Disease Association.

“A portion of the population of Suffolk County is suffering and even with effective preventative and precautionary measures will continue to suffer from a number of tick and vector-borne diseases,” according to the bill’s authors. “Some patients decline and become disabled, wheelchair-bound or bedridden.”

The “suffering from these diseases” ranges from “mild” to “years of complete physical and neurological disability, loss of hearing, blindness and sometimes death.” Suicide, it says, “is estimated to be responsible for approximately 40 percent” of deaths among people who had been suffering from debilitating tick-borne illness.

Patients, according to the bill, are often misdiagnosed with arthritis, Lupus, multiple sclerosis, Chronic Fatigue Syndrome, Parkinson’s, Alzheimer’s and “other debilitating diseases.”

Ticks are now “second only to mosquitoes as vectors of human disease, both infectious and toxic,” according to the authors. The diseases they carry are “not limited to Lyme disease” and include babesiosis, Bartonellosis, Rocky Mountain spotted fever, Q fever and the list goes on. “The number of ticks carrying these diseases is skyrocketing, posing serious public health and safety risks for Suffolk County residents.”

Suffolk County years ago was a national hotspot for Lyme disease. It’s no better here but now Lyme has spread all over the U.S., indeed the world, along with the other maladies from tick bites. “This is a global situation,” Ms. Haughie said last week.

Most people when bitten by a tick that transmits a disease can be effectively treated in several weeks with antibiotics. “If caught early and treated adequately it won’t become a problem,” said Ms. Haughie. But it’s critical to know the signs of a bite, such as a bulls-eye rash (which doesn’t always occur), and the early symptoms (and there are many). Providing an abundance of information is the website of the 5,000-member Empire State Lyme Disease Association, empirestatelymediseaseassociation.org
Enormous difficulty comes when Lyme becomes chronic. Ms. Haughie knows that well. She tells of contracting Lyme in 1999 and ending up “like an Alzheimer’s patient.” Also, “I couldn’t walk.” Long-term treatment with antibiotics got her out of it.

But health insurance companies, which used to pay for such long-term care, now won’t — the subject of the documentary “Under Our Skin.” It has received numerous film festival awards and was the subject of a special showing at the Hamptons Take 2 Documentary Film Festival last year. The documentary exposes the role of figures in the medical establishment, including doctors on medical boards who are linked to health insurance companies, in rejecting long-term Lyme disease treatment.

Moreover, the documentary presents many sufferers of Lyme who were cured by long-term treatment. For information about “Under Our Skin,” including obtaining a DVD, visit underourskin.com.

“The way people are suffering is so terrible,” says Ms. Haughie.