Karyn Bishof, once a Florida firefighter paramedic, was left confused when her hands started shaking weeks after her battle with COVID-19.
In March 2020, she contracted COVID during the first days of the pandemic. Now, two years later, Bishop’s long COVID is manifesting itself in a puzzling array of symptoms, including both high and low blood pressure, high and low temperature, constipation and diarrhea, brain fog, short-term memory loss, chronic cough, rashes, dizziness and a tingling sensation , to name just a few of its symptoms.
She has since had to quit her job and set up GoFundMe to support herself and her teenage son.
“I hate going to doctors because we don’t check the boxes, right?” said Bishof, who founded the COVID-19 Long Hauler Advocacy Project. “When you go to doctors, they ask, ‘How often do you experience this and how bad is your pain?’ Well, it depends on what day you asked me and what time of day you ask me.”
Recognizing the myriad of symptoms long COVID patients suffer, Cambridge-based corporate benefit wellness company Goodpath has developed what its founders say is the only long COVID solution on the market that is not offered in a hospital setting.
The company offers integrative care programs for health conditions that severely impact quality of life but “have traditionally been very difficult to manage in the existing healthcare system,” said Akl Fahed, co-founder and chief medical officer at Goodpath and a cardiologist and research scientist at MGH and Harvard Medical School.
Regarding conditions like back pain, trouble sleeping and now long COVID, he said: “The condition won’t kill them, but it will affect their mental well-being, their energy, their relationships – it’s really a quality of life issue. And we have essentially built an inclusive healthcare platform that enables us to manage the conditions that impact quality of life.”
“We are now starting to see a long COVID pandemic,” Fahed added. “It really falls into the same group of disorders that have a big, big impact on people’s quality of life.
Developed over the past year and launched in March, the lengthy COVID program includes a tailored approach to each client, selected following an online assessment.
“We don’t throw the kitchen sink at everyone,” said the company’s CEO and co-founder, Bill Gianoukos. “We say, ‘We think this is the best program for you.'”
Once customers sign up, either as a free corporate benefit or as an individual, they have access to a customized app, a live certified health coach for video chat, and a scent kit of rose, eucalyptus, lemon, and clove scents for patients who have lost theirs sense of smell.
Although research into long-COVID is still in its infancy, Goodpath’s founders argue that the treatments they recommend, including exercise and physical therapy, assistance with activity planning or “pacing” for people with brain fog, breathing training, dietary changes and smell training , supported by the Centers for Disease Control and Prevention and research into related chronic diseases.
“Are we 100% sure it will be effective? No, because the tests are not yet complete,” said Fahed, for example, about the smell training. “But the risk of harm is small, and the general consensus, at least in the medical field, is that this is definitely worth trying.”
The company is also sharing its growing body of long-COVID research with the medical community in Boston and beyond to try to understand the bizarre symptoms.
The founders added that the program, which enrolled nearly 200 patients in its first month, is not intended to replace medical care for people with acute symptoms.
“We’re filling that gap,” said Fahed. “You will see your doctor to have all the essentials checked to make sure you don’t need any additional tests, but then we will be here to help improve your quality of life and get you back to normal. ”