Four years into the Covid-19 pandemic, some people living with Long Covid and associated diseases are reassessing their needs, and leaving their homes in search of better quality of life.
Some of these individuals are fleeing environmental “triggers” that seem to worsen their symptoms, such as mold, allergens, extreme temperature fluctuations, or changes in barometric pressure. Many of these patients have been diagnosed with an illness known as Mast Cell Activation Syndrome. Others are seeking ways of life that can better accommodate a need to avoid reinfection, or rest and pace more easily.
It’s estimated that 65 million people worldwide now live with Long Covid, a multi-systemic chronic illness that can drastically impact a person’s ability to work and participate in daily life. It’s not entirely unusual for people with new chronic illnesses or disabilities to consider relocation.
In the Victorian era, a “Change of Air” was often recommended for sick individuals who could not seem to improve at home. However, long-distance moves can be difficult for people with chronic illnesses and disabilities, who are disproportionately impacted by poverty and may rely on family, friends, and other community members for care.
What is Mast Cell Activation Syndrome?
Tania Tyles Dempsey, M.D, a holistic medicine doctor and founder of the AIM Center for Personalized Medicine in New York, says mast cells are one of the body’s “many lines of defense against environmental threats and foreign invaders,” such as parasites, bacteria, viruses and potentially harmful environmental substances.
“The mast cell has many defense mechanisms to help our immune system deal with these toxic assaults on the body,” she said. In doing so, mast cells typically release “mediators” stored in their granules or made slowly after the mast cell has been triggered by a foreign substance. These mediators then cause reactions in the body’s tissues, organs, and systems. Mast cells sometimes misinterpret substances, such as pollen, food or medications, as unsafe, resulting in multisystemic inflammation, Dempsey said.
Mast Cell Activation Syndrome (MCAS) is typically characterized by a “hyper reactive mast cell state,” said Ilene S. Ruhoy, M.D., Ph.D., medical director at the Chiari Ehlers Danlos Syndromes Center at Mount Sinai South Nassau. Dempsey says the chronic illness often presents slowly, gradually worsening with intermittent “flares,” and may appear as allergic reactions. Symptoms can include fatigue, headaches and lightheadedness, joint and muscular pain, or abnormal growth or development in tissues and organs, among other issues. While environmental factors can play a part, hormonal changes and viral infections, such as Covid-19, can also trigger MCAS symptom onset or worsened health for people living with MCAS.
Dempsey says there are “strong similarities between Long Covid and MCAS.” Both she and Ruhoy have treated Covid-19 long-haulers who seem to have developed MCAS following a Covid-19 infection, although Dempsey cautions that some of these patients may have experienced features of MCAS before their Covid-19 infections — though many were not aware of it. Infections of any kind can activate mast cells, and some patients’ mast cells may remain active after the acute infection has resolved, resulting in chronic inflammation.
Long Covid is often understood as an umbrella term for illnesses that can encompass over 200 symptoms, ranging from severe fatigue to cognitive dysfunction and orthostatic intolerance, and is thought to impact 10-30 percent of people infected with Covid-19. Some studies estimate 17 percent of the general population may be impacted by MCAS. People with Long Covid and MCAS often struggle to access comprehensive medical care.
Laura Thomas, 49, went to three different general practitioners in Austin, Texas, after she developed fatigue and dermatological issues following a Covid-19 infection in the summer of 2020, only to be told her labs seemed normal. It took her two years to find a doctor who was able to diagnose her with MCAS, and help her consider the potential impact of environmental factors on her health.
“I still wonder what would have happened if two years before, one of the doctors had said hey, maybe this is Covid related,” she said.
Dempsey said: “Unfortunately, there is a lack of understanding [about] MCAS. There is a profound distrust of patients, especially when they have symptoms that don’t fit neatly into diagnoses that physicians have been taught.” She’s created a free guide to help patients talk to providers about MCAS.
Ruhoy said diagnosing MCAS can be difficult, because the labs for mast cell mediators can be challenging to test for, and there’s a widespread lack of clinical education. Because clinical diagnoses are common, she urges that greater awareness among providers is necessary.
Inhospitable environments
After Beth Meier, 47, contracted Covid-19 in April, 2020, she began to develop symptoms she now understands to be characteristic of MCAS — including difficulty swallowing, large hives, and, eventually, anaphylactic reactions to a variety of foods. These reactions often sent Meier to the hospital, where she discovered she was also allergic to Benadryl.
For about 10 months, she survived on a combination of a protein powder, salt, coconut oil, and Floradix, a liquid iron supplement. For a time, even drinking water triggered either anaphylaxis or coughing fits that led to asthma attacks. During this period, Meier occasionally went to the ER for saline IVs, and used a variety of measures to try to calm her throat’s reactions so she could tolerate small amounts of liquid. She relied on a nebulizer treatment three times per day, and said she was typically too breathless to talk. Eventually, her gastroenterologist scheduled her to receive a feeding tube.
In an attempt to understand what could be triggering her severe symptoms, Meier had her home in Austin, Texas, tested for mold, but the tests were negative. She took brief trips to other people’s houses and hotels, but did not experience improvement until she eventually ventured out of state.
Dempsey says that because mast cells are the body’s “front-line defense against the environment, it is not surprising that various environmental triggers could cause mast cells to become more activated and lead to a flare in symptoms.”
She and Ruhoy mentioned allergens, mold, and changes in barometric pressure as potential climate-related factors that can impact long-haulers and people living with MCAS. Some of these factors are becoming more difficult to mitigate, as pollution and climate change exacerbate extreme heat, precipitation and mold, and extend allergy seasons. “Our environment just gets dirtier and dirtier,” Ruhoy said.
Mold and perhaps allergens
Thomas was diagnosed with MCAS two years after her Covid-19 infection by a functional medicine doctor who also confirmed she had been exposed to mold — most likely at a job she held shortly after her initial infection. Thomas also says she believes her symptoms have correlated with allergen levels in Austin. She experienced a brief period of relief after getting sick, only to later learn local allergens were at their lowest levels during this time.
“Long Covid [and/or] MCAS patients seem to do well in locations with stable climates — an area without fluctuations in weather and barometric pressure,” Ruhoy said, though she cautions that everyone is different.
Some long-haulers, such as Amy Goldenburg, who said her primary symptoms match those associated with dysautonomia — a condition characterized by autonomic dysfunction that is common in people with Long Covid — has developed an intolerance to heat.
“My body struggles to cool itself,” Goldenburg wrote in an email. “We have a pool in our backyard, but I would get overheated and winded just trying to walk to it.”
Dempsey said: “There are patients who are sensitive and reactive to their environment, but the actual trigger is unknown. There is a subset of patients who can identify a change in their symptoms when they move away from their triggers.”
The experience of finding one’s home environment to be suddenly inhospitable is not only unique to people living with MCAS. Jenna Bitar, 32, says that after developing Long Covid in the spring of 2020, New York City became much more difficult to survive in.
“Long Covid made my body highly sensitive to sensory stimulation, so the constant buzz of city sounds, smells, and lights became overwhelming,” they wrote in an email. Because Bitar was also trying to avoid reinfection and was experiencing problems with mobility, the city’s crowded indoor spaces and transportation options presented further challenges. “I pretty quickly tried to figure out any way to leave for as long and as often as I could,” they wrote.
Relocating to find relief
For Meier, Thomas, Goldenburg and Bitar, relocation — temporary or long-term — has brought relief. In September 2021, Meier and her husband took a road trip from Austin to Denver based on the advice of her pulmonologist, who had heard of tuberculosis patients improving in Colorado. By the time they reached Santa Fe, Meier’s sense of smell had returned and she could eat a small amount of mashed potatoes. “I bawled,” she said. “It was otherworldly.”
The couple took two more trips to Colorado before beginning steps to relocate their family. Today, Meier says her quality of life has improved substantially. She can tolerate treatments, such as low-dose naltrexone and saline drips, that make it possible for her to go for walks and hikes, play with her children outside, and eat more foods — though she still can’t tolerate anything made in Texas, including her favorite brand of tortillas.
“I’ve put on some weight,” she said. “I had a doctor describe me as well-nourished recently, which was kind of fun.”
Inspired by Meier’s journey, Goldenburg is in the process of selling her home in Landers, Texas, and moving to Michigan. Thomas, who took a three-week trip earlier this year to experiment more seriously with the idea of living in other environments, will be renting a mobile home near the central coast of California this spring. She chose the location after testing it out during her earlier trip. “I was a different human when I was [there],” she said. “I had these moments of bliss, where I I walked to the beach…. That alone was an accomplishment for me.”
Bitar, too, has been thinking about a more permanent relocation after spending time in Vermont, and feeling relief. “There…I had the ease of walking out the door directly into nature. I…finally felt capacity to sleep through the night,” they wrote. “Being away from all the city stimulation was deeply healing for my body.”
Roadblocks to relocation
Long-distance moves are rarely easy, but long-haulers who are relocating described the process as completely overwhelming. Goldenburg, who is currently packing, said it has been even more exhausting than she imagined. “I have to pack for 2-5 minutes, then sit for 20 or more,” she wrote. “The other day, I had to ice myself down and ended up going to bed for the night at 6 p.m.”
Many people with Long Covid receive care from family members; some have moved in with parents out of a need to access caregiving or financial support.
Bitar said the cost of relocating is “currently prohibitive.” They haven’t been able to work, because of their illness, and are awaiting a decision on their application for long-term Social Security Disability Insurance. They described the idea of reapplying for social services elsewhere as “incredibly daunting.”
Bitar also worries about creating community and home elsewhere. “My parents still live in the apartment that I was born in. The city is home to me — it is where the majority of my friends and family live,” they wrote. “Leaving…I would lose closeness to my family, friends, organizing spaces, healthcare providers, government services.”
Thomas, Goldenburg and Meier are all fortunate to own homes, but moving still means a financial loss for most. The cost of Thomas’s mobile home in California is more than the income she and her husband will make renting their house in Austin.
Meier was lucky enough to sell her home in Texas at a time when buyers, on sites such as Zillow and Redfin, were making large offers, but her family can’t afford to buy a house in Colorado. “We had a very reasonable mortgage,” she said. “We’ve been renting, and the rent is too damn high, but I’m alive, so we pay it.”
Building a new life
Thomas, Goldenburg and Meier have also had to consider the needs of their family members. Goldenburg is moving with her husband, son and mother, who will be merging households once they reach Michigan, and Meier moved with her husband and her husband’s ex-wife so that their blended family could stay together. “Emotionally it was hard on the kids,” said Meier, who has two children with autism.
Thomas has worried about the burden on her husband, who has had to take on more work as she has had to work less, as a result of her illness. “He’s exhausted,” she said. “In the middle of his 70-hour [work week], he is going to have to pack up his life, and move too.”
For Goldenburg, moving will mean an entirely new beginning. She and her family have never lived outside of Texas. “It’s like starting from scratch,” she said.
Since her move, Meier has received numerous queries from other long-haulers curious about relocating. She said she sometimes feels “weird” talking about her experience, because she knows it’s not a financially accessible option for most people. At the same time, she recognizes these sort of “out of the box” ideas are hard to generate yourself, when you’re as sick as many people with Long Covid are.
She says she’s grateful that her pulmonologist suggested relocation to her, despite the costs. She’s not certain she’d be alive, otherwise. “The financial hits we’ve taken are worth it because I get to be here,” she said.
