by Gretel
Kauffman
Hikers in the Chickasaw National Recreation Area in
Oklahoma.
In the last four years, Clark Giles’s world has become a
bit smaller.
He can’t eat in restaurants, and doesn’t go to grocery or
convenience stores. Everyday things found in other
people’s homes or offices — certain air
fresheners, dryer sheets, scented candles — can
cause his ears to start ringing “like cicadas in the
trees on a warm summer night” and his brain to fog. Most
weeks, the only time he leaves his farm in northeastern
Oklahoma is to pick up poultry feed at another farm four
miles away.
Giles is one of an
estimated 450,000 Americans living with alpha-gal
syndrome (AGS), a tick-borne illness that causes an
allergy to mammalian products. Reactions range from mild
— a rash after eating a steak, for example
— to life-threatening, and can be triggered by
a range of products that include mammalian ingredients,
from food to shampoo to certain medications.
Rural populations are 20 times more likely to develop AGS
than urban populations, with people who work or recreate
outdoors especially at risk, according to Sharon Forsyth,
director of the nonprofit Alpha-gal Alliance.
Alpha-gal syndrome is first and foremost a disease of
rural populations.
“Alpha-gal syndrome is first and foremost a disease of
rural populations,” Forsyth said.
Rural patients also face disproportionate challenges when
they do develop the condition: Accessing specialist care
and AGS-friendly food can be particularly difficult in
small, remote communities. A shortage of allergists in
rural counties, and the fact that common medications,
vaccines, and medical devices contain mammalian products,
make it crucial that rural primary care providers are
educated about the condition — a goal of the
Alpha-gal Alliance.
“Rural providers, in many ways, are on the front line of
this,” said Scott Commins, an allergist and researcher at
the University of North Carolina at Chapel Hill who
studies AGS. “And because it can kind of creep into
locations and it’s had this slow spread, it’s really
important that we reach [providers] ahead of time.”
A spreading phenomenon
AGS is a relatively new discovery in the medical world:
The condition was first described by medical researchers
in 2009. Since then, the Centers for Disease Control and
Prevention (CDC) has identified more than 110,000
suspected cases, though the CDC estimates that the actual
number may be four times as high. Most of those cases are
concentrated in the southern, midwestern, and eastern
U.S., where lone star ticks, the primary carrier of the
disease, are most prevalent.
Lone star ticks, or Amblyomma americanum, are the
primary carriers of AGS.
A patient living far from an allergist doesn’t
necessarily need to travel to receive an AGS diagnosis.
In most cases, primary care providers with knowledge of
the condition can diagnose it themselves, Commins says.
But many providers aren’t familiar with the condition. A
2022
survey of primary care providers across the U.S.
found that 42% of providers had never heard of AGS, and
that 35% were “not too confident” in their ability to
diagnose or manage AGS patients.
That knowledge gap tends to be especially wide in areas
where AGS isn’t common, Commins noted.
“It’s kind of a regional phenomenon,” he said. “You could
survey a bunch of providers in Oregon and California and
they may never have heard of it because they don’t really
come in contact with patients who have it.”
As the range of lone star ticks expands, though, so has
the range of AGS.
“As it moves into new places, sometimes those providers
are not well versed in AGS,” Commins said. “That’s why
it’s super important that we raise awareness amongst the
rural providers: they’re often the first ones who have
patients with it.”
…what you don’t have is specific educational
opportunities for the primary caregivers and the [primary
care providers] who are diagnosing this illness.
The spread of AGS in rural areas has increased awareness
of the disease among both rural providers and the general
public, Forsyth says: “But what you don’t have is
specific educational opportunities for the primary
caregivers and the [primary care providers] who are
diagnosing this illness.”
Primary care providers “aren’t trained to diagnose AGS
because it’s meant to be an allergist who diagnoses it,”
Forsyth continued. “But people aren’t seeing an
allergist, so we have nurse practitioners who are having
to diagnose this. Someone in a rural area might be more
likely to have heard about AGS [than someone in an urban
area], but not have the specific training that they want
to be able to diagnose people.”
An ‘isolating’ diagnosis
After a lifetime of working outdoors and serving in the
military, Giles didn’t think much about tick bites. And
when he first heard about people developing an allergy to
red meat, he was skeptical.
That changed one night in 2022, when he and his wife
strayed from their usual chicken-based meals to have beef
for dinner. Giles woke up in the middle of the night with
a full body rash. His body went into anaphylactic shock
— “itching like crazy,” swelling up, his face
going numb.
Clark Giles was first diagnosed with AGS in 2022.
In the emergency room, he recalls, an on-duty doctor
poked his head into the room.
“Wow, look at you,” he told Giles. “I bet you don’t even
know what you got a hold of.”
Giles had no idea.
“Well, you better find out,” the doctor said, “because it
nearly killed you.”
After describing his scare to a coworker with a red meat
allergy, the coworker suggested that Giles might have
AGS. She referred him to her own allergist in nearby
Tahlequah. A blood test confirmed the condition.
Giles hasn’t had a life-threatening reaction since that
first night four years ago. But AGS has changed his life
in drastic ways. Fumes often send him into dizzy spells
and cloud his thinking. The smell of brisket in a
crockpot en route to a church potluck, a skunk on the
side of the road, a new pair of leather welding gloves
left in the car overnight — all of these things
have triggered reactions.
“If I can’t remember all my sheep’s names, that’s usually
an indication that I’m having trouble that day,” Giles
said.
He and his wife grow much of their own food on their
farm, where they raise chickens and turkeys alongside the
sheep. But caring for his sheep comes with challenges,
too: he’s had to wear a respirator and gloves at times,
especially when dealing with birthing fluids in lambing
season.
“It’s been fairly isolating,” Giles said. “If you get it
this bad, you’ve got to be very careful.”
Giles was fortunate in that he was able to see an
allergist and receive a timely diagnosis. But some of his
friends with AGS have struggled with providers who
weren’t familiar with the condition, he said.
You have to be on the ball and be your own advocate.
“You have to be on the ball and be your own advocate,”
Giles said. “And if they’re providing medication or a
procedure, you have to stay involved.”
A waiting game
The process of diagnosing AGS is multipart, according to
Commins, and includes identification of symptoms, a blood
test, and a new diet that avoids mammalian products to
see whether symptoms improve. Follow-up typically takes
place one to three months after the diagnosis.
“It really becomes a bit of a waiting game,” Commins
said. “You’re not eating the foods that you’re allergic
to and you’re trying to avoid additional tick bites. And
if you’re doing okay during that period of time, most
people don’t really need additional follow-up.”
From that point, patients typically check in once a year
for a blood test to track their antibody levels
— which, ideally, will trend downward over
time if someone is tick-bite-free. Over time, someone’s
allergies can even disappear.
To properly diagnose the condition, providers should be
well-versed in the symptoms and educated about how to
order the correct blood test, which can be “tricky,”
Commins says. They should also be cognizant of the fact
that symptoms can sometimes be delayed and diagnosis can
require some lengthy and nuanced discussion.
Scott Commins, MD, PhD, studies AGS.
“The time separation between the meal and the symptoms
often means that the providers have to really be thinking
about it and trying to elicit [answers],” Commins said.
“If you’re really crushed for time, like I think many of
our primary care rural health folks are, you may not have
as much bandwidth in that visit to really delve into a
single maybe-allergic reaction.”
Post-diagnosis, it’s also important that all types of
providers are familiar with the medications, vaccines,
and medical devices that might trigger a reaction in AGS
patients, and able to perform an informed cost-benefit
analysis.
“If you’re bitten by a rabid animal, you better get the
rabies vaccine even though it contains gelatin,” Forsyth
said. “But other cases are a little more nuanced. For
instance, who is heparin appropriate for and under what
circumstances? A big part of what we want to do in terms
of education in the rural space is to educate providers
not just about diagnosis and management of AGS, but about
how to manage things like perioperative care, or
antivenom, or cardiac surgery.”
Large university hospitals tend to have protocols for
treatment and AGS-safe formularies, Forsyth added, but
most small, rural hospitals don’t.
“They’re simply not going to have the resources unless
somehow these resources are pooled or made accessible to
them through other avenues,” she said.
Casting a wide net
Sharon Forsyth.
At least once a week, providers reach out to Forsyth to
learn more about AGS and to ask about continuing
education opportunities, she said. Many of them are nurse
practitioners or other types of primary care providers
— most training and outreach efforts have been
directed toward physicians up to this point, she noted,
overlooking the many rural communities that rely on nurse
practitioners or physician assistants for care.
To better reach all types of rural providers and
residents, the Alpha-gal Alliance has partnered with the
National Rural Health Association for outreach, and is
looking into connecting with state-level rural health
associations and offices. The Alliance is also working
with the University of Kentucky Cooperative Extension on
a pilot project that they hope to replicate with other
organizations: Ultimately, the goal is to be able to
provide different Extension offices with customizable
templates for educational materials, instead of each
Extension office producing its own materials about AGS.
To train rural providers, the Alliance is in the process
of working with a university-based medical center to
create an alpha-gal ECHO series, which would let
providers attend virtual expert-led trainings online.
What we’re realizing in the AGS community is that we’ve
got the information, but the bottleneck is trusted
messengers and distribution networks.
“What we’re realizing in the AGS community is that we’ve
got the information, but the bottleneck is trusted
messengers and distribution networks,” Forsyth said.
Commins agrees that reaching people is the biggest
challenge facing AGS advocates.
“I think the point is to try to saturate it all and hope
you get as many folks as you can by casting a wide net,”
he said.
Recently, Commins started a podcast, “Questions
People Ask,” which aims to answer common questions
about AGS. The
first episode covered the background and basics of
AGS, while the
second was targeted at healthcare providers
specifically.
For Giles’s part, he hopes sharing his story will help
others avoid, and deal with, the condition.
“There’s not a whole lot of good sources of information
out there,” he said. “I can’t really do anything to get
over this, so I do get some satisfaction from helping
other people navigate it. The main thing is just making
people aware.”
How to Avoid Tick Bites
Part of improving alpha-gal awareness is teaching
people how to avoid lone star tick bites. What’s
effective against blacklegged ticks tends to be
“completely useless” against the lone star variety,
Forsyth says: With some regional exceptions, “Lone star
ticks drink DEET for breakfast.”
Unlike other varieties of ticks, which can be largely
avoided by sticking to the middle of paths and not
brushing against any tall grass, lone star ticks will
“hunt” and chase after people. Here are a few tips to
protect yourself against them:
- Wear permethrin-treated clothing, and spray
permethrin on your shoes. - Wear tall rubber boots when outside and wrap the
top of them with double-sided carpet tape (or duct tape
folded in half). - Carry a lint roller to remove “tick bombs,”
clusters of hundreds to thousands of larval ticks.
These tend to look like dust on your skin and are a
common source of AGS.
