By Ellen Frankman
Donna Fischer knows exactly what it feels like when an allergic reaction is coming on.
It begins with hives. They multiply and travel across her body, growing larger and larger as they morph into welts. Her skin itches to the point where it is no longer bearable, her ears start ringing, her eyes swell shut, and her heart races. Sometimes, using an EpiPen is the only option for Fischer to avoid going into anaphylactic shock, and she often ends up in the hospital either way.
For Fischer, these reactions are fairly recent, a condition she acquired within the past three years after being bitten by a lone star tick, a brown tick about a third of an inch long that is marked with a white spot if it is a female or scattered spots if it is a male. The allergic reaction that follows the tick bite is triggered by the consumption of red meat, and more specifically caused by the presence of antibodies to a certain sugar known as alpha-gal.
“I live in North Haven and it is like a tick haven here,” said Fischer, who says she used to get Lyme disease every year just from gardening in her yard. “I’ve been here 17 years and it seems worse than ever.”
Fischer first noticed her body reacting to meat about three years ago. Her symptoms steadily worsened for six months while she worked to figure what was triggering the allergic outbreaks.
It was East Hampton allergist Dr. Erin McGintee who finally diagnosed Fischer’s allergy as being caused by a lone star tick bite. Dr. McGintee hadn’t seen patients with such unusual allergic reactions until about four years ago when she moved back to East Hampton, the town she was raised in.
“As an allergist, it’s really unusual for a patient to suddenly become allergic to foods they have eaten their entire lives,” said Dr. McGintee.
Faced with multiple similar cases, Dr. McGintee recalled a journal article she had read on a new delayed allergic reaction to meat. She ordered tests for it and increasingly found her patients were coming back positive for antibodies reacting to alpha-gal.
Dr. McGintee now estimates that she has around 80 confirmed cases of the alpha-gal allergy, 15 to 20 of which are in children. She’s noticed familial patterns, but otherwise cannot determine why some individuals react to alpha-gal and others do not. Both the quantity and the fat content of the meat consumed seem to encourage allergic reaction, but Dr. McGintee has found that it’s not an “all-or-nothing” allergy. While some of her patients have been able to rid themselves of the allergy after six months, others have been living with it for years.
“I don’t think it’s as new as we think it is,” said Dr. McGintee. “It has been going on for a long time, it’s just that no one really knew what it was.”
The alpha-gal allergy is certainly nothing new for North Haven resident Jan Scanlon, who first noticed something was wrong about eight years ago.
“At that period in time, no one really knew what was happening,” said Scanlon. “We thought I was just developing a sensitivity to meat.”
Scanlon, who lives in a small marshy inlet in North Haven with her partner, says she was accustomed to pulling ticks off her body. But one evening, dinner with friends left her in the hospital.
“The way alpha-gal affects my life is this,” said Scanlon. “I have to be very scrupulous about what I put into my body. I can’t take anything into my body that is mammalian. No beef, lamb, or pork and no by products of mammals. No cheese, no milk, no butter.”
Scanlon can eat fish and poultry, but she’s found that milk and meat products are often difficult to avoid. Scanlon was hospitalized one evening after eating duck at a restaurant. Though she had been assured beforehand that her meal would contain no mammalian meat or dairy, she later learned the duck had been marinated in veal stock the night before. In the eight years that Scanlon has had the alpha-gal allergy, she has been hospitalized nearly a dozen times.
“I’ve been in anaphylaxis twice and that is quite unpleasant,” said Scanlon. “You just sit there and you can’t breathe and you think, ‘Oh my gosh, this is a crappy way to die.’”
Scanlon’s partner, Josephine DeVincenzi, says alpha-gal has affected both of their lives immeasurably.
“First of all, it’s life threatening,” said DeVincenzi. “When you get the rash and then the potential anaphylaxis, if you don’t have any EpiPen or are not near a hospital, it can be deadly.”
The aggressive nature of the lone star tick is also worrisome to DeVincenzi.
“You could be sitting on a park bench, and if the lone star tick is 10 or 12 feet away from you it will move towards a warm blooded animal,” she said. “It’s scary.”
The increasing incidence of the alpha-gal allergy on the East End of Long Island naturally begets the question of where these lone star ticks are coming from.
According to Dr. Scott Campbell, a public health entomologist and head of the Arthropod-Borne Disease Laboratory for the Suffolk County Department of Health Services, the American dog tick used to be the most abundant tick in the area back in the ‘80s and ‘90s when Suffolk County was predominately agricultural and had more open fields.
“It was the perfect situation for Rocky Mountain spotted fever,” said Dr. Campbell, who says the last outbreak of the disease in Suffolk Country was in 1996 when eight cases were reported in Center Moriches.
Lyme disease started becoming more prevalent in the late ‘80s alongside a surge in the population of the blacklegged tick, more commonly known as the deer tick.
“What changed is the ecology changed,” said Dr. Campbell. “All of these fields started to become forests. The meadow voles no longer wanted to be there, so mice moved in and so did deer and the blacklegged tick, which all share a woodland habitat.”
Along with Lyme disease, blacklegged ticks carry pathogens that carry the human diseases babesiosis and anaplasmosis. And as more and more individuals have moved out onto the East End, there have been more and more exposure between humans and the diseases the tick population carry.
Dr. Campbell can recall seeing lone star ticks for the first time on Shelter Island in the mid ‘90s when he was doing research on blacklegged ticks. He wondered then if the lone star would become established.
And indeed it has.
Ground feeding birds that migrate up and down the East Coast likely brought lone star ticks to the area from the southeast where they used to be more predominant. After dropping off birds, the ticks found a host to live on in the deer population, which has since become the primary reservoir for the pathogens that the lone star tick carries, including ehrlichiosis, STARI, and tularemia. The deer population is also largely responsible for carrying the tick westward throughout Suffolk County, and deer have subsequently become an easy target for local governments attempting to curb tick-borne illnesses.
“The wonderful fallacy is that if you kill all the deer then you will kill all the ticks,” said Scanlon. “It’s just not true.”
Small birds, wild turkeys, and mice are all reservoirs for the pathogens lone star ticks carry. Furthermore, a lone star tick can still induce the alpha-gal meat allergy with a single bite, even if a pathogen hasn’t had the required 36 hours to be transmitted.
Misinformation has largely contributed to the delay in recognizing the connection between lone star ticks and alpha-gal, as well as a lag in understanding tick-borne diseases at large. Many individuals still believe, and are told by doctors, that they have chiggers when they find dozens of tiny bites on their lower extremities.
“In the 20 years I have been studying ticks, traveling all throughout Suffolk County and the South Fork, I have never seen a chigger,” said Dr. Campbell.
All of the evidence that he’s received from the public, perhaps hundreds of specimens, has in fact been larval lone star ticks. Though larva can’t transmit pathogens, they can bite an individual and induce the alpha-gal allergy.
For those that have contracted the allergy, Dr. McGintee says the best way to manage reactions is to avoid tick bites. If subsequent lone star tick bites can be prevented, there is a likelihood that for the some the alpha-gal allergy can reverse itself.
But many local residents believe the tick population has gotten so out of control that avoidance is nearly impossible. Scanlon has been bitten multiple times by lone star ticks in the eight years that she has had alpha-gal.
“We live in this beautiful home on this magnificent marsh, in this magnificent town and we are seriously considering moving,” said DeVincenzi. “Maybe we have built and are choosing to live in areas we aren’t meant to.”