Denise Bernier’s “brain fog” led her to forget simple words in English, so the native French speaker substituted French phrases. Christine Tucci lived in darkened rooms for 10 weeks because her migraine headaches felt like “my head was going to explode.”

Tucci said she became so desperate and frustrated from continuous migraines that one day she asked her doctor, “What are you going to do for me? I can’t live like this.”

Anthony Tucci, Christine’s husband, has endured many months suffering from fatigue, joint pain and lacking his sense of taste and smell, among other symptoms.

Bernier, of Sabattus, and the Tuccis, of Wales, are just a few of what are likely thousands of Maine people – and millions nationwide – suffering from long-haul COVID-19 symptoms. It’s unknown exactly how many there are, but estimates range from 2 percent to 23 percent of all COVID-19 patients. In Maine, if 10 percent of patients experienced long-haul symptoms lasting months or years, that would represent more than 7,000 people.

The numbers will keep growing, as the delta variant creates another wave surging across the United States and causing a spike in cases in Maine. Millions of long-haul COVID-19 patients will keep straining the nation’s health care system.

While the pandemic hangs on, patients suffering from long-haul COVID-19 are seeing their symptoms hang on as well.

“One day I went to the lumber yard to pick up some pine and I got an overwhelming whiff of pine smell,” Anthony Tucci said. “I thought, ‘Oh, I finally got it back, but then two minutes later it was gone again.” Tucci said his sense of smell returns at times but then quickly vanishes again.

Maegan Crabtree of Westbrook said she has spent 16 months “fighting the beast” and she wants people to know that long-haul COVID-19 is common. While Maine has one of the highest vaccination rates in the country, more than 350,000 Maine people who are eligible for immunization still haven’t gotten their shots, months after the vaccines became widely available.

Crabtree – who is vaccinated – said some people still aren’t taking the disease seriously.

“You’re not just weighing the risks of getting a bad flu. You are taking a gamble that could really affect your quality of life,” she said.

Crabtree, 42, said even though she was a healthy, young person before getting COVID-19, that did not prevent long-term health problems caused by the virus.

“I assumed that because I was young and healthy, I would be better in days and weeks, and not sick month after month,” she said.

Vaccination is the best tool against the spread of the virus, studies increasingly show. The U.S. Centers for Disease Control and Prevention last week published a study based on infections in Kentucky which found that people who have had COVID-19 and are unvaccinated were twice as likely to become reinfected than vaccinated people were to get COVID-19 in a breakthrough case. Breakthrough cases are more likely to be mild and resolve quickly.

Breeze Odeen, 42, of Orland, a long-haul COVID patient since March 2020, said she’s dealing with neuropathy and POTS, a low blood flow condition where she experiences severe dizziness, inability to stand for significant amounts of time and racing heartbeats.

“I’m nowhere near the person I was a year and a half ago, but I am very determined to get better,” Odeen said, describing the disease as debilitating. “You’re stuck living in this limbo of not really getting better and doctors not really knowing what to do.”

Odeen said it bothers her to see people politicize the virus with false claims that it’s a hoax or that the pandemic is not severe.

“Instead of deciding the virus is the enemy, we have turned on each other,” she said.

Brenda Bennett-Vachon nearly died of COVID-19 while spending several weeks on a ventilator at Central Maine Medical Center in Lewiston. Three months after her discharge, she uses oxygen continuously because of lung scarring and mostly walks with a cane or walker. Even cooking a dinner of lasagna or homemade meatballs is exhausting.

“I’m not a patient person, and still being in this condition is driving me crazy,” Bennett-Vachon said.

Dr. Darlene Peterson, a MaineHealth primary care doctor who has treated COVID-19 long-haul patients, said anyone who reports symptoms more than four weeks after a COVID-19 diagnosis falls into the long-haul category.

“The most common symptoms we are seeing are fatigue, shortness of breath and brain fog, difficulty focusing and concentrating and joint pain,” Peterson said.

Since the virus is relatively new, doctors are still learning the best course of treatment for long-haul COVID patients. Currently, occupational and physical therapy, pulmonary breathing exercises and improving sleep, exercise and diet are “cornerstones” to treatment plans, Peterson said.

Dr. Todd Kitchens, the director of the new COVID Recovery Clinic for Central Maine Healthcare in Lewiston, which currently treats about 75 patients, said clinicians keep discovering effective treatments, but there’s no standardized playbook.

“We’re in the beginning stages of this virus and really understanding and seeing how treatments evolve,” Kitchens said. “It’s not about fixing or curing long COVID right now, because we don’t yet understand what it is.”

He said the vaccine is always recommended for long-haul COVID patients.

“We have seen that 50 percent actually have their symptoms improve significantly after they get vaccinated,” Kitchens said, adding it’s not yet clear why the vaccine has led to improvements. “When patients leave our office we tell them to get your vaccine.”

A Yale University study this spring showed improvements in symptoms for 30 to 40 percent of long-haul COVID-19 patients who received the vaccine, but more research is needed to determine the reasons.

Dr. Jason Maley, director of a COVID-19 survivors program at Beth Israel Deaconess Medical Center in Boston, told the Harvard Gazette in an April interview that he expects long-haul COVID is a condition that the health care system will be grappling with over the next several  years.

“There are a few current theories related to the immune system and the manifestations of long COVID that we’re seeing. All are unproven at this point,” Maley told the Gazette. “We’re seeing long COVID most often in people who did not have severe COVID initially.”

Maley said low levels of the virus could be present months after the initial infection, although scientists have not proven that theory.

CHRISTINE AND ANTHONY TUCCI

The Tuccis both fell ill from COVID-19 shortly before Christmas, and they had no idea they would still be dealing with symptoms eight months later.

Christine Tucci, 44, said she had loss of smell, fatigue, shortness of breath, dizziness, racing heartbeat and gastrointestinal problems, but migraine headaches were the worst symptom. She was hospitalized for six days, and for many weeks she was so severely sensitive to light and sound that she could barely function.

“I couldn’t read a book, watch TV, look at a screen, even listen to a book,” Tucci said. “All I could do was sit in a dark room with the dog on the living room couch for 10 weeks. It was horrible.”

She said the experience was isolating and caused depression and anxiety. Tucci spoke with her neurologist’s office every day for three months, which helped her get through the worst times.

“People got tired of hearing me complain about it,” Tucci said. “You’re suffering in silence because nobody wants to hear about it anymore. You feel like a bother to people.”

She started taking experimental medications for her variety of symptoms, but what has seemed to work best is Botox injections for the migraines. Botox injections have been shown in studies to be effective at preventing chronic migraines, and the treatment is approved by the Food and Drug Administration.

Her symptoms have improved, but she still has pain and eye strain on the right side of her face, cognitive problems finding the right word to say, less severe migraines, light sensitivity, and she still can’t smell or taste much. She was off work for months as a nurse consultant but has now returned to work. She wears specialized glasses to reduce the eye strain on her right eye, which has helped her view screens.

For Anthony Tucci, 59, COVID-19 symptoms have persisted for months, and he’s not as energetic as he was before falling ill.

“It’s like I have no go-go juice,” Tucci said. “To this day, I can still get into a funk. I have no energy. I come home from work and I’m just done.”

BRENDA BENNETT-VACHON

Bennett-Vachon has come a long way in her recovery, but still has many more months – possibly years – to battle the aftereffects from contracting COVID-19. She may need an oxygen machine for the rest of her life.

“I feel like I own a medical supply company, between my oxygen, walker and cane,” said Bennett-Vachon, 72.

Every week, though, she seems to get a bit stronger, and with physical therapy is now able to walk to the end of the driveway and around the house, although she needs to take frequent breaks.

But considering that she was in the hospital from late December to mid-May, mostly at Central Maine Medical Center in Lewiston, and on a ventilator for six weeks, Bennett-Vachon is thankful to be alive.

“Before I got COVID, I thought that if I got COVID, it’s going to kill me. I have asthma,” she said. Bennett-Vachon said she took all of the COVID-19 restrictions seriously and doesn’t know how she contracted the virus. After her condition deteriorated in the hospital, doctors broke the news to her that she needed to be ventilated.

“I was devastated,” Bennett-Vachon said. “I thought, ‘This is the end.'”

Dan Vachon, Brenda’s husband, said it’s a miracle she survived COVID-19, and while recovery can be slow at times, he notices improvements.

“Sometimes I’ll see her doing something around the house, and I’ll say, ‘Hey, look at what you are doing; you weren’t able to do that three weeks ago,” Vachon said.

Bennett-Vachon’s need for continuous oxygen is caused by lung scarring, which is a somewhat common symptom for long-haul COVID-19 patients.

Dr. Al Teng, chief of critical care at CMMC, said for people who fall ill, the body has an overreaction to the coronavirus, and the immune response is what actually causes most of the damage.

“The immune response can lead to scarring in the lungs, with unfortunately scar tissue replacing healthy tissues,” Teng said. He said the scarring is irreversible, but nevertheless some patients see improved lung functioning over time.

Bennett-Vachon said she needs less oxygen per day than she did a month ago, but she still has to closely monitor her oxygen levels, and when they get too low she needs to sit down and breathe deeply. It can be discouraging, but she also realizes that she’s much stronger than when she was removed from the ventilator in February.

“I couldn’t walk, I could barely breathe. I couldn’t even pick up a pen to write my name,” Bennett-Vachon said.

MAEGAN CRABTREE

Crabtree, 42, of Westbrook, said she contracted the virus in March 2020, and has been dealing with symptoms ever since. Sometimes her condition improves, and lately she has been feeling better, but it’s been a “constant battle.”

“Before COVID, I have never had any kind of illness that just hung on and on for months,” said Crabtree, a learning specialist at Waynflete School. “When I got COVID, I thought it was probably going to get better in a few weeks, and then I would just move on.”

But the symptoms kept going, including joint pain, headaches, shortness of breath, chest pain and heart arrhythmia. She contracted pneumonia last spring, and while she got better from that condition, other symptoms persisted.

“I had this heaviness, like I felt like there was an elephant on my chest,” said Crabtree, who is married with two children. “I would almost pass out from standing up.”

Crabtree said she has suffered from cognitive problems, often called “brain fog,” and peripheral neuropathy, a weakness or numbness in the hands and feet.

She said she has taken numerous medications, supplements and changed her diet to deal with COVID-19, including for a few weeks the controversial drug ivermectin.

“I was just so desperate to try anything,” she said. Crabtree said her physician gave the OK to try ivermectin, with the understanding it was an experimental treatment.

Ivermectin treats intestinal parasites in farm animals and is not recommended for a COVID-19 treatment. Numerous studies have shown that ivermectin does not work against COVID-19, according to the FDA.

Crabtree said eating healthy, getting rest, including a nap during the day, has helped, and prednisone, a steroid that is used to reduce systemic inflammation and treat neuropathy, has also seemed to help keep symptoms at bay.

This summer, she was able to hike Tumbledown Mountain, a milestone in her recovery.

“At one point last year, I thought I might not survive this, that I might be like all these people you see in the news. It was terrifying,” Crabtree said.

DENISE BERNIER

Bernier, a veterinary assistant from Sabattus, said when she first got COVID-19 in March 2021, the only symptom was a nasal drip. But the next day, “I felt like I was hit by a Mack truck.”

In the months since then, she has suffered from headaches so bad that it’s like “an ax to the head,” nausea, vomiting, fatigue, heartburn, brain fog, tinnitus, loss of taste and smell. Bernier said she couldn’t work for weeks after she cleared the virus, because of severe fatigue and persistent headaches.

“I was so sick and people didn’t understand why I was so sick,” Bernier said. “I looked normal on the outside, but I was so sickly on the inside.”

To cope, Bernier took a lot of vitamin supplements, but what has seemed to work best is time to heal and rest. She is still not fully recovered but can work her job and function.

“Everything I do now just takes such a great effort, and that is not me,” Bernier said.

Kitchens, the long-haul COVID clinic doctor, said because the virus is so new, treating long-haul COVID-19 has often baffled doctors. Kitchens said doctors look at ways to lower stress on a person’s immune and nervous systems with a “multi-pronged approach.”

Treatments range from improving diet, sleep and exercise to speech therapy for cognitive problems, herbal and vitamin supplements, even acupuncture. Many patients have lung problems, and they will be sent to pulmonary specialists to improve breathing. Steroids like prednisone are also a common treatment.

But he said patients need sympathy and understanding as well as an effective treatment.

“If our patients get nothing else from our program, it’s validation that what they’ve been dealing with is real,” Kitchens said. “They’ve had COVID for months and months and often they haven’t been listened to.”

If you are a long-haul COVID-19 survivor and are looking for a peer support group, check out the Maine COVID-19 Long Haulers Facebook page.

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