Because the seek for therapies continues, many Maine sufferers are nonetheless suffering with lingering covid

Celia Koski is never sure until she wakes up in the morning if she can make it to work at her skin care company. Diagnosed with long covid-19 in 2020, Koski has good days and bad days.

“I never know from day to day if I’m going to be able to work or not,” said Koski, who suffers from symptoms such as fatigue, “brain fog,” headaches, tremors, severe joint pain and double vision. “It’s such a bizarre disease and it’s so new. It’s frustrating not to have the answers. But on the other hand, I understand why they don’t.”

The 65-year-old Westbrook resident said she tells its customers in advance that she may need to cancel appointments at short notice. She has also had to reduce the total number of people she sees. Despite the frustrations, Koski said, she remains “very hopeful.”

Koski is patient No. 22 in the Maine Health Institute for Research’s study of long-term COVID-19 patients, which is part of the National Institutes of Health’s RECOVER (Researching COVID to Enhance Recovery) study. The aim is to help researchers learn about long-term covid-19 and why some patients experience symptoms months or even years after being infected with the coronavirus. A better understanding could lead to effective treatments for long-term covid, and some treatments are already being tested in clinical trials.

It is unclear how many people have symptoms of prolonged covid – and to what extent. Estimates range from a low of 10% to as many as 50% of people who have been infected with covid-19 have had symptoms that persist for months or years. Many estimates are somewhere in the middle of 20% to 25%.

Dr. Clifford Rosen, principal investigator for the Maine Health Institute for Research, said the societal impact of prolonged covid is staggering, with many people having to drop out of the workforce or greatly reduce how much they work.

Through the study, Rosen and other researchers at MaineHealth can be part of the solution.

To date, 109 Maine patients are participating in the RECOVER study out of 12,500 patients nationwide enrolled through the institute. Maine joined the RECOVER trial in December 2021 — receiving a $1.5 million federal grant — and the first Maine patients were enrolled this year.

Scientists still don’t know the cause or causes of prolonged covid, but Rosen said they are making progress.

“One theory is that the virus is still there in the tissues, hiding in the fat cells,” he said. “So people’s immune systems aren’t really up to snuff because the virus has never been cleared.”

Another possibility is that the immune system is tricked into thinking the virus is still there even when it’s gone, causing immune reactions that make people sick.

“One of the questions we want to answer is whether the immune system (in long-term Covid patients) is not doing its job well enough or (is) doing its job too well,” Rosen said.

He said researchers are also looking at whether a spike protein on the coronavirus that has been detected in the blood of long-term Covid patients up to a year after being infected plays a role in how long they suffer symptoms. Another theory is that tiny blood clots called microclots may be causing the problems.

As a patient in the RECOVER study, Koski underwent a series of tests and evaluations, including genetic testing, blood tests, CAT scans, glucose measurements, physical therapy assessments and neurological examinations. They are intended to establish a baseline for the types of symptoms people are experiencing and help efforts to discover why.

“I’m trying to be patient and I’m hoping something will work out,” Koski said.

Rosen said there is still a lot of misinformation out there about the covid-19 vaccines and long-term covid. He said one thing is certain: the vaccines do not contribute to long-term covid. Side effects from the vaccines, he said, are rare, almost always benign and disappear quickly.

TREATMENT RESEARCH

On the treatment front, the Maine institute is participating in two national drug trials, of immulina and paxlovid.

Paxlovid is an antiviral currently given within five days of infection, but Rosen said it has potential for people suffering from prolonged covid. Immulina is a natural supplement — derived from an extract of blue-green algae — that aims to reduce inflammation and can potentially ease symptoms, Rosen said.

“For people who have long covid, there are these new research trials that are started all the time,” he said. “There is hope.”

Another medication, naltrexone, showed promise this year in a small National Institutes of Health study of 52 patients who took a low dose and will be investigated further. Naltrexone is currently used to treat opioid and alcohol abuse.

Koski said she has been approved to take a low dose of naltrexone starting in January, and she hopes it improves her symptoms. Naltrexone is not included in the MaineHealth research.

One myth that’s still out there, Rosen said, is that ivermectin can relieve long-term Covid symptoms. He said ivermectin, which is used to treat intestinal parasites, does not work and can be harmful.

WAITING FOR RELIEF

While patients wait for effective treatments, their lives remain turned upside down.

Dawn Summers-McDonald, 52, who is from Westbrook but has moved to Florida, said the prolonged covid symptoms she has had since 2020 have “destroyed my plans for my future.”

“I love to cook and I was thinking of opening a catering business,” she said. Not only did she drop that plan, but she’s isolated. She doesn’t socialize much, afraid of getting covid-19 a second time.

Summers-McDonald is doing immunoglobulin treatment at the Mayo Clinic, and it has helped, but she still suffers from many symptoms, including blurred vision, numbness, a burning sensation on her skin and gastrointestinal problems.

“I pretty much had a sore throat every day for two years,” says Gretchen Drown, a 57-year-old Portland resident who is part of the RECOVER study. “It will flare up and subside, but it almost never goes away.”

Drown, who has suffered from long-term covid since 2020, said her symptoms have improved in recent months, but it’s still rare for her to go an entire day without having any. They include feelings of euphoria and depression, nerve pain, insomnia and cognitive problems.

Drown believes the RECOVER study will be the key to restoring her health. But she expects that individualized treatments, not one-size-fits-all, will yield the best results because people with long-term covid have such a wide range of problems.

“There’s no understanding yet of what’s driving these symptoms. This is going to be so important,” says Drown. “This is going to be the data set that all of our providers are going to rely on for years to come.”

For people with long covid who live in Maine and want to share their experiences, there is a support group on Facebook called “C19 Long Haulers Maine.”

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