'I wasn't getting better': Fox Chapel woman endures battle with long haul covid

More than a year and a half after she contracted covid-19, Andrea Berlin almost feels completely normal.

The Fox Chapel native-turned-Londoner said she fell ill with the virus in March 2020 — early in the pandemic by most standards — and she thinks she probably picked it up on the subway before the country went into lockdown.

“I got over that acute stage. The fever went, but I was left with fatigue, headache, a body tremor almost like Parkinson’s, heart palpitations — the fatigue was the worst,” Berlin said told the Tribune-Review this month.

The Fox Chapel Area High School graduate was captain of the tennis team. She works as a recruiter now in London. Her father, a neurologist, has offices throughout the Alle-Kiski Valley.

When it comes to covid-19, the “recovered” statistic often translates simply to “survived.”

Many people go on to report myriad symptoms continuing for weeks, months and, at this point, years. Numerous studies have tried to put a finer point on the exact number of long-covid sufferers.

Estimates vary as to just how many covid-19 survivors suffer from long-covid symptoms. In the U.S., some have pegged the numbers anywhere between 10% and 30%. One University of California-Davis study estimated up to a quarter of covid patients suffer some “long-haul” symptoms.

Often referred to as “covid long-haulers,” these are people who have lingering symptoms — some they didn’t even have during the acute illness. Others fell severely ill and survived. Others still had mild or no symptoms of the virus.

Yet once their system is clear of the infection, they report chronic fatigue, chronic aches and pains they never had before, the same shortness of breath and heart palpitations that marked the virus itself. They experience brain fog and depression, and many cannot tolerate much if any level of exercise.

The covid is gone, and yet it continues.

“Even a year and a half into it, we don’t know a lot,” said Dr. Alison Morris, division chief of pulmonary, allergy and critical care medicine at the University of Pittsburgh.

What doctors and medical experts do know, she said, is this: People are getting symptoms that take much longer to resolve than the virus itself. The syndrome doesn’t discriminate, in that it affects people who were severely ill and hospitalized with covid as well as those who had milder cases.

“There’s a wide, wide variety of symptoms that cover just about every organ system,” said Morris, who also leads the UPMC Post COVID-19 Recovery Clinic. “Some people come in with primarily fatigue and muscle aches and brain fog. Some people come in with difficulty with their breathing or trouble exercising. Some people come in with low blood pressure and racing heart.

“It’s really quite a variable syndrome.”

The Centers for Disease Control and Prevention list more than a dozen possible symptoms experienced by covid long-haulers.

For Berlin, her acute illness was not mild. Twice in the three or four weeks during which she was ill, she was taken by ambulance for chest pains and heart palpitations. For the better part of a month, she suffered through a near-constant fever, feeling too sick to sleep, heart palpitations and shortness of breath.

“It was like, everyone says it’s a two-week illness and you’ll get better,” she said, “but I wasn’t getting better.”

While the fever diminished, she was left with constant fatigue, a headache and a body tremor that she likened to Parkinson’s disease. The fatigue, she said, was the worst of the lingering long-haul symptoms.

“I had to lie down most of the day or else I’d feel worse the next day,” she said, noting that she was completely unable to care for her 7-year-old daughter and 3-year-old twins.

She went to specialist after specialist, tried acupuncture and somewhere around 30 different supplements, osteopathy and psychiatry.

“I saw so many doctors, and they all said, ‘Rest, pace yourself, it will get better, you just have to rest through it,’” Berlin said.

Dr. Tariq Cheema, division director of pulmonary, critical care, sleep and allergy at Allegheny Health Network, said that in the early days of the pandemic, most of the attention was on keeping people alive.

“A lot of the focus and time and energy was being spent on inpatients, and rightly so, because they were sick and people were dying,” said Cheema, lead physician for the AHN Post Covid-19 Recovery Clinic.

In the United Kingdom, an Imperial College London study called Real-time Assessment of Community Transmission (REACT) surveyed more than 500,000 people, of whom more than 76,000 reported having had covid. Researchers asked about 29 different symptoms, ranging from fatigue and brain fog to dizziness and heart palpitations.

More one-third said they experienced at least one symptom for 12 weeks or more, and 15% said they had three or more symptoms for at least that long. The study took place between September, 2020 and February.

‘I can actually be part of my kids’ days’

Berlin wasn’t getting better.

She said she took comfort in social media, finding online groups of other so-called long-haulers, sharing and comparing symptoms and advice. It was on social media where she first came across Dr. Bruce Patterson’s name.

“I wasn’t really improving, and I was getting so desperate,” she said. “I thought, ‘Oh, a doctor is really kind of engaging with trying to figure it out.’”

She reached out to Patterson, a former lead virologist at Stanford University and who spent the 1980s and 1990s working in HIV research.

During the first months of the pandemic, Patterson’s company was working on therapeutic trials in the treatment of covid-19.

“I noticed at the 60-day follow-up and 90-day follow-up that these patients got better, these patients were discharged from the hospital, but by no stretch of the imagination where they immunologically normal,” Patterson said.

He used machine learning to analyze blood samples and says the analysis has come up with an algorithm for identifying immunologic profiles specific to long-haulers.

Boiled down, he said, his research indicates this: A specific type of white blood cell can carry covid proteins for months or years after the initial infection — yet there’s no sign of an active virus.

The sole role of those specific white blood cells, called monocytes, is to “patrol blood vessels,” as Patterson put it, and that includes going through the blood-brain barrier. They have a propensity to bind to blood vessels. Because there is still a covid protein hanging on when they bind, it causes inflammation.

That inflammation, he posits, can lead to the chronic fatigue, brain fog, exercise intolerance and the myriad other symptoms some suffer in the weeks and months following covid recovery.

Patterson’s treatment consists of two steps: Keeping those cells from migrating with a class of drugs called CCR5-antagonists and to keep them from binding to blood vessels using a drug class used to lower cholesterol called statins.

“If they can’t bind, they die, so eventually these cells will die off,” Patterson said.

Patterson said his company is working with around 100 physicians across the country, though he also works with patients of primary care physicians as well. He said they do have coverage in case a patient doesn’t have a PCP or their PCP “hasn’t really bought into what we’re trying to do.”

Among that network of physicians is Dr. Elliot Michel, a neurologist in private practice and on staff at Allegheny Valley Hospital in Harrison — and Berlin’s father.

“They can’t do the things that they used to do,” he said of the long-haul patients he sees. “That’s really what their main complaint is. They want to get back to how they used to be, and they can’t understand it.”

For Berlin — whose treatment was made up of an anti-parasitic drug, an HIV antiviral drug, a low dose of steroids, and an anti-depressant to help reset her system — that meant spending real time with her kids.

“The best thing is I can actually be part of my kids’ days,” she said. “Instead of lying on the sofa watching them play, I actually got to play with them and feel like I was a mom again.”

She said she’s almost returned to work full time, and she feels like she has her identity back.

“Don’t accept that this is just how you are going to be for the rest of your life. Keep seeking answers and help,” she said. “Don’t feel guilty that you are concentrating on yourself and your own recovery.”