‘It’s turned my life upside down’: Long COVID persists for many Ohioans

“I have not worked since January of this year and have accelerated the sale of my company because of it and don’t know really what...I’m going to do,” Morgan said. “It’s turned my life upside down. I’m 58. I sold it with plans to maybe retire between 62 and 65 and to stay engaged and involved but let them younger guys kind of run with things, and this was not my plan.”

The COVID-19 public health emergency ended in May, but what has continued for Ohioans like Morgan is the mystery around long COVID.

A Dayton Daily News investigation found a number of local sufferers of long COVID dealing with symptoms that have persisted months and years, impacting their quality of life and ability to work while doctors have little answers beyond doing what they can to treat the varying symptoms.

‘A lot of residuals’

Long COVID is a condition following an acute infection from COVID-19 and is associated with more than 200 kinds of symptoms, according to the American Medical Association.

The U.S. Department of Health and Human Services on July 31 announced the formation of the Office of Long COVID Research and Practice to coordinate the long COVID response across the federal agencies, in addition to announcing the National Institutes of Health will launch more long COVID clinical trials. The HHS’ current analysis estimates that 7.7 million to 23 million Americans have developed long COVID.

“There’s been a lot of residuals with this long COVID that has not been very pleasant,” said Arnold Huckeby, a Lebanon resident living with long COVID. Huckeby first got COVID in August of last year.

Most people who get COVID will get over the illness in about 10-14 days, doctors say, but up to about 20% go on to experience long COVID.

“There are a lot of different definitions of what people consider long COVID, but essentially it is the persistent symptoms that people experience long after the acute bout of the illness resolves,” said Dr. Roberto Colon, chief medical officer at Miami Valley Hospital. Those symptoms can include persistent headaches, fatigue, mild cognitive issues described as brain fog, fluctuating blood pressures, persistent problems with organs, lingering inability to taste or smell, lingering respiratory problems, or other issues.

The symptoms can persist weeks, months, or years, according to the Centers for Disease Control, which can make life difficult for those patients. It can also be a setback for their doctors.

“Long COVID is a source of frustration for a lot of patients, but also the health care professionals that are treating them, because there’s no cure,” Colon said. “There is nothing that we can give that is going to make the long COVID go away.”

Lingering loss of taste, smell

Doctors are focused on managing patients’ symptoms, but for some symptoms, there are not a lot of options on coping with them, such as the loss of smell and/or taste.

“It can be quite devastating for people, not because it has profound health complications, but it affects quality of life, and there isn’t a great treatment to be able to make it back,” Colon said. “We’ve developed some techniques to try to retrain our brain to smell and taste things again, but everything we have is really focused on symptom management.”

Tracy Landgren, a Kettering resident living with long COVID, first got COVID in December of 2020, and she is going on almost three years of dealing with symptoms, including altered senses of taste and smell and brain fog. Landgren also suffered from persistent headaches, which subsided after about a year.

It is her altered senses, though, which have impacted her quality of life, as she loves to cook. Some of those senses have come back, but not entirely.

“I love to cook, and I really have a hard time being able to taste things and make sure that I’m not putting in too much salt or too much garlic because I can’t taste it. That’s really hard,” Landgren said.

Patients turning to experimental treatments

Huckeby also suffered from a loss of taste and smell, and he sought out different treatments to try and get those senses back.

“I got tired of being patient. I got tired of resting,” Huckeby said.

He worked with a pain management doctor after reading about a nerve block procedure that had about a 50% success rate in improving symptoms of loss of smell or taste.

The nerve blocking procedure is a standard one with pain management, but it is still considered an experimental one with long COVID symptoms, according to the Cleveland Clinic.

Huckeby received some pushback from a different specialist before his pain management doctor agreed to the procedure.

“Not having taste and smell is probably one of the worst things that anybody can ever take away from you,” Huckeby said. After the procedure, he was among the half of patients where his symptoms instantly improved.

“It was immediate. It was there. It was back. It was just amazing,” Huckeby said. “Now the peanut butter and jelly sandwiches never tasted so good.”

Morgan is trying to get involved in a long COVID clinic at Ohio State University to try and find answers for his symptoms.

“There are quite a few typically academic medical centers around the country that have opened up long COVID clinics so that patients with these symptoms can come in to the clinic and be seen by a variety of specialists all in one location,” said Dr. Jeffrey Weinstein, Kettering Health patient safety officer.

Through these clinics, the hope is that doctors will learn more and better treatments for long COVID patients.

Long COVID and the brain

Sometimes people living with long COVID can have trouble communicating, such as difficulty expressing language, which is a condition called aphasia.

“Sometimes it does make me feel like, ‘Oh my God, am I losing my mind here?’ Because I can’t think of these simple words,” Landgren said.

“You become a thesaurus because you keep forgetting words,” Morgan said.

Huckeby has had to change some of his hobbies, such as going to see plays or live music, because of his persistent fatigue from long COVID.

“We see this every day,” Dr. Fadi Tayim, director of the Brain Mapping Center at the Premier Health Clinical Neuroscience Institute, said about the brain fog and other cognitive issues long COVID patients are facing.

In a study looking at brain metabolism, Tayim said researchers found there is a metabolic change with long COVID. There is increased cognitive difficulty, which will increase neurological inefficiency, he said.

“The brain is simply working harder, and it’s not getting as much done,” Tayim said.

Research studies suggest that, with long COVID patients, the size of the left hemisphere of the brain, as well as brain functions, can be impacted, Tayim said. Volumetric analyses comparing left and right hemispheres of the brain in long COVID patients showed the left to be smaller in a recent study, he said.

“If there’s any changes or damage to the structural left hemisphere in general, you can have speech difficulty certainly, you could have memory impairment, you can have some attention and concentration difficulties,” Tayim said. “Maybe more verbal difficulty than visual. It just depends on the person.”

Doctors are unsure of what this will look like long term for patients. For now, there are some therapies that can help with retraining the brain.

“There are various cognitive rehab programs that are available in the area or available online that can help people with kind of brain retraining,” Tayim said.

Doctors say the best way to prevent getting long COVID is to prevent getting COVID-19 in the first place. Multiple studies have shown that the risk of getting long COVID is lower in patients who have been vaccinated, Weinstein said, though a number of individuals this newspaper interviewed had some form of the vaccination.

COVID patients who were vaccinated develop long COVID less frequently than those patients who get COVID and were not vaccinated, Weinstein said.

“Vaccination does not prevent all COVID infections; however, it does tend to prevent severe, life-threatening COVID-19, and it also does seem to protect against long COVID,” Weinstein said.