More than a year and a half after contracting COVID-19, Andrea Berlin is feeling almost completely normal.
The Fox Chapel-turned-London native said she fell ill with the virus in March 2020 – at the start of the pandemic by most standards – and she believes she likely picked it up on the tube before the country does not hang.
“I overcame this acute stage. The fever was gone, but I ended up with fatigue, headaches, almost Parkinson’s-like body tremor, heart palpitations – fatigue was the worst, ”Berlin told the Tribune-Review this this month.
The Fox Chapel Area High School graduate was captain of the tennis team. She is now working as a recruiter 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 as “survived”.
Many people then report a myriad of symptoms that persist for weeks, months and, at this point, years. Many studies have attempted to get a more precise picture of the exact number of people with long-covid.
Estimates vary as to the number of covid-19 survivors who suffer from long-lasting symptoms. In the United States, some have pegged the numbers between 10% and 30%. A University of California-Davis study estimated that up to a quarter of COVID patients suffer from “long-term” symptoms.
Often referred to as “long-haul COVIDs,” these are people who exhibit persistent symptoms – some they did not even have during acute illness. Others fell seriously ill and survived. Others still had mild or no symptoms of the virus.
Yet, once their system is no longer infected, they report chronic fatigue, chronic pain that they’ve never had before, the same shortness of breath and heart palpitations that have plagued the virus itself. They suffer from brain fog and depression, and many cannot tolerate much if any level of exercise.
COVID is gone, and yet it continues.
“Even after a year and a half, we don’t know much,” said Dr. Alison Morris, division chief of pulmonary, allergic and critical care medicine at the University of Pittsburgh.
What doctors and medical experts know, she said, is this: People have symptoms that take much longer to resolve than the virus itself. The syndrome does not discriminate, in that it affects people who are critically ill and hospitalized with COVID as well as those with milder cases.
“There is a very wide variety of symptoms that span pretty much every organ system,” said Morris, who also heads UPMC’s COVID-19 recovery clinic. “Some people come in mainly with fatigue, muscle aches and brain fog. Some people come with difficulty breathing or having difficulty exercising. Some people come with low blood pressure and a racing heart.
“It’s really a fairly variable syndrome.”
The Centers for Disease Control and Prevention lists more than a dozen possible symptoms experienced by long-haul COVIDs.
For Berlin, his acute illness was not benign. Twice in the three or four weeks she was ill, she was taken to an ambulance with chest pain and heart palpitations. For almost a month, she suffered from an almost constant fever, feeling too sick to sleep, heart palpitations and shortness of breath.
“It was like everyone was saying it was a two week illness and you would be better,” she said, “but I was not getting any better.”
As the fever subsided, she found herself with constant fatigue, a headache and a body tremor which she compared to Parkinson’s disease. Fatigue, she said, was the worst long-term persistent symptom.
“I had to lie down most of the day otherwise I would feel worse the next day,” she said, noting that she was completely unable to take care of her 7-year-old daughter and her twins. of 3 years.
She went from specialist to specialist, tried acupuncture and some 30 different supplements, osteopathy and psychiatry.
“I saw so many doctors, and they all said, ‘Rest, take your rhythm, it will be better, you just have to rest during this,” “said Berlin.
Dr Tariq Cheema, director of the pulmonary care, intensive care, sleep and allergy division at the Allegheny Health Network, said that at the start of the pandemic, the main focus was on keeping people alive. .
“A lot of the attention, time and energy was spent with the inpatients, and rightly so, because they were sick and people were dying,” said Cheema, chief medical officer of the AHN recovery clinic. Post COVID-19.
In the UK, a study from Imperial College London titled Real-time Assessment of Community Transmission (REACT) surveyed more than 500,000 people, more than 76,000 of whom said they had COVID. The researchers asked about 29 different symptoms, ranging from fatigue and brain fog to dizziness and heart palpitations.
More than a third said they had experienced at least one symptom for 12 weeks or more, and 15% said they had had three or more symptoms for at least that long. The study took place between September 2020 and February.
“I can really be part of my children’s days”
Berlin was not improving.
She said she took comfort on social media, finding groups of other so-called long haulers online, sharing and comparing symptoms and advice. It was on social media that she first came across the name of Dr Bruce Patterson.
“I wasn’t really improving and was getting so desperate,” she said. “I was like, ‘Oh, a doctor is really trying to figure it out.'”
She contacted Patterson, a former senior virologist at Stanford University 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 during the 60-day follow-up and the 90-day follow-up that these patients were improving, these patients were released from the hospital, but without any stretch of the imagination where they were immunologically normal,” Patterson said. .
He used machine learning to analyze blood samples and says the analysis developed an algorithm to identify immunologic profiles specific to long-haul people.
In summary, 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 – but there is no sign of a virus. active.
The only role of these specific white blood cells, called monocytes, is to “patrol the blood vessels,” as Patterson puts it, and that includes crossing the blood-brain barrier. They have a propensity to bind to blood vessels. Because there is still a covid protein that sticks together when they bind together, it causes inflammation.
This inflammation, he postulates, can lead to chronic fatigue, brain fog, exercise intolerance and the myriad of other symptoms some suffer in the weeks and months following recovery from Covid. .
Patterson’s treatment consists of two steps: preventing these cells from migrating with a class of drugs called CCR5 antagonists, and preventing them from binding to blood vessels using a class of drugs used to lower cholesterol called statins.
“If they can’t bind together, they die, so these cells will eventually die,” Patterson said.
Patterson said his company works with around 100 physicians across the country, although he also works with patients of primary care physicians. He said they have coverage in case a patient doesn’t have PCP or their PCP “hasn’t really accepted what we’re trying to do.”
Among that network of doctors is Dr Elliot Michel, a neurologist in private practice and a staff member at Allegheny Valley Hospital in Harrison – and the father from Berlin.
“They can’t do the things they used to do anymore,” he said of the long-distance patients he sees. “This is really their main complaint. They want to go back to what they were, and they can’t figure it out.
For Berlin – whose treatment consisted of an antiparasitic drug, an antiviral drug for HIV, a low dose of steroids, and an antidepressant to help reset her system – that meant spending real time with her. children.
“The best thing is that I can actually be part of my children’s days,” she said. “Instead of lying on the couch watching them play, I got to play with them and I feel like I’m a mom again.”
She said she almost returned to full-time work and felt like she had regained her identity.
“Don’t accept that this is how you are going to be for the rest of your life. Keep looking for answers and help, ”she said. “Don’t feel guilty for focusing on yourself and your own recovery. “