The tiny parasite latched onto Craig Smith’s pants or maybe his shirt.
It had clung to a leaf he brushed against or perhaps a blade of grass. Or just maybe it had hunted Smith, tracking him as the aggressive species is known to do.
The lone star tick then started crawling, making its stealthy journey in search of an inconspicuous place it wouldn’t be disturbed.
Smith didn’t feel the whispery touch of its eight legs in the spring of 2022. Nor did he feel its hand-like hooks digging in before it broke his skin with a barbed, harpoon-like organ in its mouth.
But that moment would transform his life.
“It just flipped everything — turned my life upside down completely,” Smith said.
The tick bite was the beginning of a mysterious and agonizing medical odyssey that stumped his doctors for months. It would affect not only the way the Cream Ridge man eats, but even the heart and cholesterol medication he takes.
Smith, 62, is among the soaring number of New Jersey residents with alpha-gal syndrome, a once rare and potentially life-threatening food allergy also known as the red meat allergy. The immune response to beef, pork, lamb and dairy has been linked to the lone star tick, a fierce and voracious bloodsucker that feeds on birds and mammalian hosts such as deer, dogs, and yes, humans.
Smith — a retired union laborer with a bald head and gray beard known to wear tie-dyed Grateful Dead shirts — could suffer the consequences the rest of his life.
Although found throughout the Eastern and Central United States, the lone star tick has spread north thanks to a warming climate. The parasite, named for the white spot on the backs of females, has not only invaded the Garden State’s forests, but taken to biting residents in their own backyards, according to Alvaro Toledo, a tick expert at Rutgers University.
“We are seeing more ticks than ever,” he said. “And we are seeing ticks in areas where we didn’t see them before.”
The result? Cases of tick-borne illnesses are exploding.
Lyme disease. Powassan virus. Rocky Mountain spotted fever.
Alpha-gal syndrome might be the most bizarre of them all.
And experts are witnessing a staggering spike in cases.
In 2009, there were only two dozen or so cases in the United States, according to Dr. Scott Commins, an associate professor of medicine and pediatrics in the allergy and immunology division at the University of North Carolina at Chapel Hill.
Now?
“We know of over 34,000,” he said. “We think there’s probably closer to 50,000, maybe even more.
“It’s been kind of a whirlwind in terms of how these cases have just exploded.”
Ticks inspire primal fear, and not just because they’re a member of the spider family. They are a true parasite, latching on and sucking blood, refusing to let go for days until they’ve had their fill.
The tick’s bite forced a complete shift in Smith’s diet — and his life.
First came the unbearable hives that wouldn’t go away. Then came the unexplained stomach cramps, severe abdominal pain and diarrhea.
Smith can no longer eat steak. Pulled pork. Cheese. And he can no longer drink milk. It all makes him seriously ill.
“Food is like one of your — I mean, it’s life,” Smith said with anguish in his voice.
The changes were devastating for a man with a well-used smoker in his shed and picky eating habits since childhood. The stress and frustration sent his life into upheaval, manifesting in a deep depression, he says. It even strained his relationship with his wife Liz, who has been with him for 42 years and became his wife in 2016.
“The food, the medicine — when you compile all that together, and then it’s affecting my marriage,” Smith said. “It’s affecting my wife.”
And it all started with a tick bite he didn’t realize he had.
‘He didn’t get the help he needed’
The mysterious rash broke out in the middle of the night.
Huge red marks covered Craig Smith’s arms, legs and back. The raised, sensitive patches were intensely itchy and hot to the touch. One mark on his back was the size of a dinner plate.
He was baffled as to what they were — and in agony.
“You’re itching all over,” he said.
“You’re like: What the heck is going on?” he added.
Smith’s doctor recognized it as hives, but could not determine the cause. Neither could an allergist.
It was “very scary because they were so huge,” said Liz, 66.
And it was the first sign something was wrong.
Steroids offered temporary relief in the spring of 2022. But “as soon as the steroids ran out — boom,” the hives returned, Smith said.
The next few months were an ordeal. Craig and Liz navigated the baffling symptoms with few answers.
Then he remembered something.
In January and February of last year, he had been at his daughter’s house — she lives nearby — helping her take down a tree on her Monmouth County property. Could something have happened then?
“I was in the woods for a month and a half straight, getting firewood and taking a giant tree down,” he recalled.
And then he remembered a chance conversation with a friend of his neighbor. The man said he had developed a strange illness and could no longer eat meat because of it. He also mentioned hives.
Smith thought nothing of it at the time. But he put the pieces together in late May or early June 2022, two months after his own case of hives emerged. He went online and began researching his symptoms.
It was the first time he heard of alpha-gal syndrome.
“I saw this thing about (ticks) and thought about him and looked it up,” Smith said. “And there was the first symptom, the most prevalent symptom of the whole thing was hives.”
He told his doctor, who ordered a blood test. He was positive for alpha-gal syndrome.
The lone star tick is usually active in New Jersey from April to September. It transfers the alpha-gal sugar molecule from its saliva into its hosts, and when some of those people eat red meat or dairy — which also contain the molecule — it triggers their immune system to attack the foreign carbohydrate, causing a reaction. Doctors search for those antibodies when testing potential patients.
The revelation provided little relief.
Smith wasn’t prepared for what came next: despair. There is no treatment beyond an avoidance diet. And top experts are still learning about the allergy, which was discovered only in the past two decades.
“It was sad,” Liz said. “He didn’t get the help he needed.”
Smith is a tough, old-school guy. A union man. A laborer. But he harbors guilt over his struggles, especially a difficult period in his marriage due to his illness.
“You put that on yourself,” he said.
Smith hadn’t just lost steaks and burgers. Any mammalian-based food was now literally off the table.
Everything he eats now has to be scrutinized. Each trip to a restaurant requires grilling the waiter about ingredients. He knows what will happen if he slips up.
The stomach cramps and abdominal pain could get “very miserable,” he said.
Smith even stopped taking his blood pressure medication for a few days, tired of feeling sick. The drug — amlodipine besylate — contains an ingredient derived from an animal product that triggers the allergy and his gastrointestinal symptoms.
But he was forced to again take it, despite the stomach cramps it triggered.
The doctor “says that it’s more of a risk to not take the blood pressure medication,” Smith said. “You can’t walk around with high blood pressure all the time.”
“It was scary,” Liz said.
Smith is actually among the lucky ones, despite the misery.
His case is in the middle of the alpha-gal spectrum. Some with the allergy suffer constricted airways, plummeting blood pressure and vomiting. They can’t even inhale fumes from cooking meat without getting seriously ill.
Smith also received a diagnosis far quicker than most.
Many sufferers must wait years before learning what’s wrong with them.
A tick that hunts
We sit in Craig Smith’s leafy backyard in Cream Ridge, surrounded by huge cedar and hemlock trees that form a canopy over his property.
Deer, squirrels and rabbits are frequent visitors, though a fence he installed now keeps the deer somewhat at bay.
Backyards just like this one have become the domain of the lone star tick.
“The prevalence of tick-borne diseases is increasing, and it has been increasing steadily for the last at least 20 years,” Toledo said.
Commins has been studying alpha-gal syndrome for about 15 years and has watched the cases soar.
“It’s really quite striking,” he said.
It’s hard to know exactly what’s causing the rise, experts say. Some believe climate change and the proliferation of deer in the dense Northeast and Midwest are propelling it. But much remains unknown.
“If this trend of climate change continues, that makes certain areas suitable for the tick, and if that happens, the tick will colonize…” Toledo said. “So yes, climate could be one of the factors — not the only one because host distribution and diversity is also important — but it’s definitely one of the factors.”
Experts stress the importance of using repellants, even in your backyard, as the lone star tick’s northward march continues. The parasite’s aggressive behavior separates it from even other ticks.
“It’s a tick that bites people very often,” Toledo said.
It even displays hunting behavior.
“Most ticks are passively looking for a host,” Toledo said. “But this tick can actually actively look for a host.”
The lone star tick can detect a nearby animal or human through odors or vibrations. And even if “they don’t find the host, they will hunt for the host,” Toledo said.
Its bite is usually painless and goes unnoticed. The tick will remain attached for as long as seven days.
The good news is alpha-gal syndrome is not caused by a pathogen. So not everyone who gets bitten will develop the reaction.
“It’s only a subset of the population that, for whatever reason, develop this condition,” Toledo said. “But it’s like having an allergy to something. Everyone can be exposed, but only a subset of the population will get that allergic reaction.”
However, one of the factors that makes diagnosing alpha-gal so difficult — and often results in delays that can stretch on for years — is the lag time in symptoms after eating.
Food allergies usually emerge within minutes. But alpha-gal symptoms often don’t crop up for hours.
“Because of that delay, you just don’t associate it with food intake,” Commins said.
Smith can still eat chicken, turkey and fish. But it’s hard to exaggerate the importance meat played in his life.
He had always been a picky eater. There were certain foods he just wouldn’t touch — even as an adult — including greens and other vegetables.
“Basically, I was a carnivore,” Smith said.
He compared it to an eating disorder.
“And that put me in such a narrow food lane,” he said.
That selective diet made Smith particularly vulnerable to alpha-gal. Now his food choices are even narrower.
He is not alone among the allergy sufferers in mourning the loss of a major part of his diet — and the enjoyment that came with it — according to Commins. There’s also the inherent anxiety when just one bite of food can trigger an allergic reaction. And then there are the missed social interactions because eating out or at the homes of friends could make you sick.
Craig and Liz love traveling, concerts and restaurants. Now, he must scrutinize everything he eats.
“You get so frustrated. Food becomes an enemy to you,” he said.
Smith has a nutritionist who has become a therapist of sorts. She understands the emotional side of it.
Sitting in his backyard I still hear anguish in his voice.
“I was totally devastated,” he says.
The meat smoker now sits idle, a relic of his past. It once was the centerpiece of parties with friends.
But the question remains: Will he ever get his old life back?
Alpha-gal symptoms can actually lessen or even disappear in a year or two — provided sufferers avoid further tick bites, experts say.
But it’s already been a year for Smith.
“There certainly are cases of ‘permanence,’ I guess,” Commins said, “but even that I’m not really sure we know (because) it hasn’t been around or been described for that long.”
Smith tries to be optimistic.
Maybe one day he will use that smoker again.
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Spencer Kent may be reached at skent@njadvancemedia.com.
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