From brain fog to nosebleeds: There’s a name for what’s happening to people affected by derailment

They began arriving shortly before noon on a frigid day last week, each one stepping into the warmth of a Darlington, Pennsylvania, office and the embraces of friends. In all, the gathering included more than a dozen people, and they quickly got busy, unloading boxes of donated hams, produce and canned goods, and setting up a makeshift food bank for their financially strapped neighbors, some of whom were already showing up. One member of the group passed around a clipboard and a pen so those waiting for food could write down their names.

You’d think it was a church group bringing their community a bit of holiday cheer until you wandered through the room and heard the conversations. Three people standing around a small table listened while one man described the nosebleeds that continue to haunt his family. In fact, he said, he’d had a real gusher the night before — it was so bad he’d had to wash the blood out of his beard. He showed pictures of blood pouring from his daughter’s nose.

Such photographs may be too gruesome to display in most places, but not here. Pictures are proof. Later, one woman showed photographs of deep, ugly ulcers on her arms and hands. Then she raised her sleeve to show the scars, which she tries to hide with makeup. She’s kept a detailed diary of everything that’s happened to her since the night of Feb. 3, 2023.

That’s when a Norfolk Southern freight train ran off the tracks 6 miles from away, in East Palestine, Ohio. Broken rail cars filled with toxic chemicals burned all that night and into the next day. Two days after the crash, officials announced some of the cars in the tangled pile still contained their toxic loads, and those cars were heating up. They could explode, officials said, so the next day they drained the chemicals into a ditch and set them on fire. (The National Transportation Safety Board later reported that the cars in question were, in fact, cooling down.) 

The resulting pillar of black smoke looked like a special effect in a disaster movie. You’ll hear people in East Palestine describe it with one word: evil. Certainly it shocked even those who set the fire. You wonder what went through their minds as they watched the plume rise and then flatten as it hit an inversion and spread like an airborne oil spill. Did the hair on their necks stand on end? What thoughts entered the minds of Norfolk Southern executives sitting safely in their offices and homes in distant cities and, we assume, watching the video images on TV? What plans were they making? Within a few days, they had their trains running through town again. Business as usual.

Those passing out hams and canned food in Darlington last week saw the cloud and figured their community had been poisoned. Nearly two years later, they’re still angry about it. Their anger builds when they hear stories of sickness. 

And there are plenty of those. People describe rashes and sore throats, sinus infections, heart ailments, cancer, headaches, hair loss, depression, brain fog. One Pennsylvania resident says she recently lost her sense of time while driving. She arrived at her destination and wondered, “How did I get here?”

Nadine Luci has a story. Her health went haywire the day of the big burnoff. She was unlucky. Nadine lives in East Rochester, Pennsylvania, which is 16 miles from the derailment site, but on the day officials burned all those toxic chemicals she happened to be shopping in an area along Route 51 that is within a few miles of East Palestine. She went to Aldi, Walmart and a place called Tractor Supply Co., where she bought dog food. At one point, she looked through her windshield and saw that giant cloud of black smoke.

Nadine didn’t think much about it. She certainly didn’t connect the smoke to the derailment. She wasn’t following events in East Palestine very closely — TV news is just background noise to her, she says. She figured an 18-wheeler had overturned and caught fire farther west on Route 51. Big trucks roar along that road all the time.

So Nadine finished her errands and, before heading home, pulled into the drive-thru at a KFC restaurant to pick up dinner. While waiting in her car, she noticed a burning sensation on her lips. That was weird, she thought. Soon she felt the same irritation in her tongue, eyes and skin. At the drive-thru window, she asked for a cup of ice, which she rubbed on her lips as she drove home.

Back at her place in East Rochester, things got worse. Nadine’s mouth and throat felt like they were on fire. She developed a pounding headache. Her chest tightened, she had difficulty breathing. Stranger still was this: inside her body, she felt ice cold. It freaked her out.

“What’s happening?” she wondered. She called her brother Anthony in Maine. Anthony keeps an eye on the news; he knew what was happening in East Palestine. He sent her a link to a video of the chemical burnoff and suggested it had something to do with her symptoms. 

Nadine saw the video images of the fire and the roiling black cloud and thought, “Oh, my God!”

“You better get to the hospital,” Anthony told her.

***

The continuing health problems rising out of the East Palestine area raise a lot of questions. To a layperson, some of the issues make sense — the burning sensation in the throat, for example, and the rashes. After all, chemicals get into your airways; they settle on your skin. Lots of people have experienced irritation from solvents they use at home and work; they know how this works. But how can a toxic exposure cause gastrointestinal issues? Or brain fog? Or depression? Those who experience these things say friends and family members, and sometimes even doctors, tell them the problem is psychological. “You’re stressed out, see a therapist,” they’re told.

And stress can certainly play a role, but Texas physician Claudia Miller suggests there’s something more going on. A professor emeritus at the University of Texas Health Science Center at San Antonio, Miller has spent decades studying the effects of toxic exposure. She first appeared to East Palestine-area residents months ago, during a Zoom meeting organized by activists concerned about the health of those affected by the derailment. 

In his book “They’re Poisoning Us! From the Gulf War to the Gulf of Mexico — An Investigative Report,” author Arnold Mann describes Miller as “one of the most prominent voices in the field of environmental medicine.” Before becoming a physician specializing in allergy and immunology, she worked as an industrial hygienist for the United Steelworkers. There, in the early 1970s, she helped set standards for workers exposed to emissions in coke ovens, electronics assembly plants and lead smelters.

Miller says toxic agents unleashed by the derailment and subsequent fires altered certain immune cells in the bodies of many who were exposed. Those cells, called “mast cells,” are dispersed throughout the body, which is why residents report such a wide range of symptoms, from skin sores to bloody noses to reproductive and gastrointestinal issues.

Researchers are just beginning to understand how all of this works. In fact, it was only three years ago, in 2021, that Miller and a few of her colleagues published a paper exploring the interaction between toxic substances and mast cells. Most local physicians simply don’t yet know about it.

This lack of knowledge is a problem that needs to be resolved if patients are to be properly diagnosed and treated, Miller said. She notes that Peter Spencer, a professor of neurotoxicology at Oregon Health Sciences University, recently sent a letter to more than two dozen academic colleagues from across the U.S., urging them to incorporate toxicant-induced loss of tolerance, or TILT, into their toxicology programs. Spencer is considered a pioneering neurotoxicologist, so his recommendation could carry some weight.

So, what are mast cells?

Miller calls them the “first responders” of the body’s immune system. The Cleveland Clinic website describes them as “your body’s alarm system.” They’re white blood cells — you’re probably already familiar with these — but instead of residing in the bloodstream, they live in tissue throughout the body. You’ll find mast cells in the skin, lungs, brain, heart, the respiratory tract. Like other white blood cells, they protect your body from foreign substances such as viruses, bacteria, parasites and toxic substances — but not by destroying the invader.

Instead, when mast cells sense a threat, they release chemicals that open blood vessels and bring other immune cells into an affected area. Activated mast cells create mucus and cause contractions in muscles in the airways and gastrointestinal tract — all in an effort to push out harmful substances.

People experience activated mast cells in many ways — often as swollen itchy skin, a runny nose, a cough or sneeze. Sometimes even vomiting or diarrhea.

Problems arise if mast cells are altered to the point where they activate when they normally wouldn’t or shouldn’t. Chemical exposure can cause this alteration, Miller says, resulting in a disease process toxicant-induced loss of tolerance. That process may be well underway in East Palestine, Miller said.

***

Nadine needed to get to an emergency room but felt she was in no condition to get behind the wheel of a car, so she called her friend Cindy, who drove her to a health care facility in Cranberry, Pennsylvania. A doctor listened to Nadine describe her symptoms, then ordered an X-ray of Nadine’s lungs and a CAT scan to check her brain. Both revealed nothing out of the ordinary.

“All I had was high blood pressure,” Nadine recalls. “They thought I was crazy.”

Nadine returned home with no answers. The symptoms persisted. She took acetaminophen tablets and bought eye drops at a health store in hopes they would alleviate the dryness in her eyes. A week or so after the burnoff, she visited her primary care physician. By then, ulcers had developed in Nadine’s eyelids. and blood sometimes dripped from her nose. She saw an otolaryngology specialist, who used a scope to examine her throat. She remembers him telling her, “It looks like a bomb when off in there.” Nadine saw the image and saw what she describes as “scale.”

Doctors prescribed steroids and a medicinal gargle. She ate soft foods such as soups, scrambled eggs and mashed potatoes because they caused less irritation to her mouth and throat. Her tongue bled. She sucked lozenges and chewed gum to relieve the dryness in her mouth.

Her physician had recommended she see a toxicologist in Pittsburgh. It took her forever to get an appointment, she says, but during a visit in June the toxicologist recommended Nadine leave the area for a month. Nadine acted quickly. She scheduled a visit to a remote section of northern Maine where her brother lives. Of course, she’d be joined by her 6-year-old pit bull terrier, Nina, a rescue dog.

It takes 15 hours to drive to her brother’s house. Nadine didn’t think she could do it alone, so she bought a plane ticket for a friend from Maine, who flew to Pittsburgh to accompany her.

Once she was in the Pine Tree State and breathing clean air, Nadine felt better. Her symptoms disappeared. “I was jumping for joy,” she says. “I could taste spaghetti. I could taste steak.” At home in East Rochester, a lingering metallic taste had tainted every meal.

After a month, it was time to return home. Nadine bought another airline ticket so a friend could fly to Maine and accompany her and Nina on the drive back to East Rochester. Within a week, her symptoms returned. Nadine was devastated.

***

TILT occurs in two stages, Miller said. It starts with a person’s initial exposure to toxic chemicals. This can happen in a few different ways. There can be a big exposure event — soldiers serving in the early 1990s Gulf War, for example, were exposed to toxic smoke from oil well fires. Another example is the collapse of the World Trade Center buildings in New York on 9/11, which exposed thousands of people to smoke from burning aircraft fuel and building materials — virtually everything inside the Twin Towers and the two airliners — as well as dust from the pulverized structures. 

(Miller’s experience extends to both of these events. She was the first to document chemical intolerance in Gulf War veterans and testified at a 1996 congressional hearing into Gulf War syndrome, and she serves as an adviser to the World Trade Center Health Registry, which monitors the health of those who were exposed during and after the terrorist attacks.)

The East Palestine train derailment and burnoff fall into the “big event” category. Nadine could have entered this first stage during her shopping trip on the night of the burnoff.

But people can become exposed in more subtle ways at home and at work. Building materials, adhesives, cleaning supplies, molds — all exude toxic gases that, over time, have the same effect as a cataclysmic exposure. 

No matter how it occurs, this initial exposure to chemicals alters the body’s mast cells, which become much more sensitive and can spring into action when they perceive even the slightest threat. This is stage two: the triggering of sensitized mast cells by chemicals that previously caused no reaction.

This is a problem because we live in a country awash in chemicals — more than 86,000 are included in a 2024 EPA inventory. Products that can cause reactions surround us in our homes, cars and workplaces. Air fresheners, nail polish, household cleaners, new carpet and furniture, tobacco smoke, exhaust — all of these can trigger sensitized mast cells. 

Once triggered, those mast cells release thousands of inflammatory chemical messengers called mediators. The result: symptoms that can strike several different systems in the body. They can turn up in the stomach and intestine, throat and lungs, the skin, the brain — anywhere mast cells are found.

That’s why some people who’ve suffer from TILT experience “brain fog” — or problems thinking clearly and focusing — as well as memory difficulties, confusion and depression. Chemical intolerance can wreak havoc in the limbic system, the portion of your brain that manages anxiety, irritability, emotions, behavior, motivation and memory. “Sudden rage is another symptom,” Miller said. “Some Gulf War veterans gave away their guns because they were afraid they’d use them on their children, and this was totally out of character for them.”

Many of those veterans are still sick and have to be careful about exposing themselves to agents that “trigger” reactions. These can include foods, drugs, cleaning solutions, even barbecue smoke and barbecued meat that had absorbed triggering chemicals.

Chemically intolerant people who talk to health professionals about their symptoms are often diagnosed with post-traumatic stress disorder and then sent to a psychiatrist, although the root cause may be chemical intolerance. 

Miller and her colleagues developed a tool designed to identify and assess people who may have become intolerant to multiple chemicals. Called the Quick Environmental Exposure and Sensitivity Inventory (QEESI), it’s a questionnaire used by researchers and clinicians around the world. Completion takes about 10 minutes — it’s an easy process, and users can even create a graph of their symptoms and how they’ve changed over time. Users can share the results with their physicians. 

Not everyone reacts the same to chemical exposure, Miller said. Those with a history of allergies, for example, may be more sensitive than others. That fits with Nadine. Respiratory illness has haunted her since she was a child growing up in Beaver, she said. “I’m a product of these mill towns, a product of the rust belt,” she said. “I was the allergy child, the asthma child.”

***

If Nadine experienced stage one of TILT when she was exposed to airborne contaminants on the day of the burnoff in East Palestine, then what could be causing stage two, the triggering of her mast cells? One answer may lie in the bright reddish glow she can see in the distance when she looks out her bedroom window at night.

The Shell Pennsylvania Petrochemicals Complex lights up this part of Beaver County. The “cracker plant,” as people call it, covers nearly 400 acres along the Ohio River. It utilizes ethane to produce millions of tons of plastic pellets. Since production began in 2022, the plant has been fined numerous times for sending pollutants into the air and water.

Nadine reported no health issues from those contaminants before the derailment. Are they now triggering her symptoms? Something in her environment certainly seems at fault, because her health improved dramatically when she left the area to live for a month in a cleaner environment in Maine.

***

Once a person has experienced TILT, they can be triggered by extremely low levels of exposure — amounts that are measured in parts per billion. Miller tried to get the National Institute of Environmental Health Sciences or a university to use equipment capable of detecting such small levels of contaminants in the homes of a few people experiencing health problems in the East Palestine area. She got no takers, so she funded the testing herself. She asked toxicologist George Thompson to conduct the air sampling.

So far, Thompson has tested the air in three homes. He focused his efforts on rooms where people became ill. The tests revealed low levels of cresol, an organic compound that can act as a sensitizer.

Once the affected person’s home is contaminated, it’s extremely difficult to remove all the agents causing health issues. Chemicals and toxins travel through any opening — holes in walls, for example, and electrical outlets — and work their way into a home’s drywall and wood. “It’s a nook and cranny problem,” Miller said. “These are microscopic particles, and gases and vapors, at very low levels. They will follow any avenue they can.”

Miller told the story of a Texas woman suffering from TILT after a fire inside her family’s home. She was repeatedly exposed to cleaning agents used inside as workers cleaned and restored the home. She began experiencing health problems and developed an autoimmune disease called scleroderma that disfigures the skin. Workers removed all the wallboard in the house, but it didn’t help. The combustible products from the smoke that were the source of her sensitization had even been absorbed into the wood framing.

“She just dwindled, and her health went down the drain,” Miller said. The woman died a few years ago. The case sticks in Miller’s mind.

The threat may not end with the person sensitized. Research indicates the gene alterations can be passed along to children, and even grandchildren, who could become more susceptible to diseases and other health problems. One recent study found that parents with high chemical intolerance scores had an increased likelihood of having children with autism and attention-deficit/hyperactivity disorder.

“You have to start protecting people,” Miller said. “The next time this happens, you get people out of there. And you may have to buy out their homes if you can’t get them cleaned up.”

***

Nadine’s symptoms continue. A few days ago she said, “Last night it felt like somebody just stuffed my nose with chlorine tablets. That’s how much it burns.”

She figures she must leave the area in order to be healthy. She had been saving to buy a house somewhere far away from East Palestine and the cracker plant, but the trip to Maine ate up about $6,000 of that money — she’d had to buy food and gas and plane tickets and pay for several nights at an Airbnb and a hotel.

And if she did leave, where would she go? Her son lives in Wheeling, West Virginia, but he says it’s polluted there, too. She thinks Maine or Vermont would work, but she’s not sure about the cold, especially in Maine. 

Leaving is something she dreads. Her Beaver County roots run deep. She has a history here and friends and a community. The thought of saying goodbye to everything brings tears to her eyes.

“My parents are buried here, my grandparents are buried here. My little brother lives in Ellwood City. To leave everything … it would be heartbreaking.”