A new variant of COVID-19 has recently led to increased rates of infection, with Aspirus reporting a 10% positivity rate.
The Department of Health Services reports hospitalizations have increased in northern Wisconsin by 12% and that over 75% of hospital beds are in use.
Any COVID-19 infection can lead to long COVID.
For WXPR’s Health Notes, Hannah Davis-Reid spoke with someone who was already struggling with their health before the pandemic to talk about life after long COVID.
For the last 17 years, 35 year old Minneapolis resident Billy Hanlon has spent his summers at a lake in Minocqua for family reunions.
“Minocqua has always held a special place. In my heart that area has always just been a really special place to me,” he said.
But ever since his health declined in 2021, he hasn’t been able to go.
“You know, when we fight for your quality of life and health, that's something I still envision trying to be able to find in my future again, these family trips that are really important to me,” said Hanlon.
Hanlon used to hold a managerial role at a Fortune 500 company in Minneapolis.
He had never had health issues and grew up as an athlete, playing hockey, football, and running.
“I was in the prime of my life, like, personally, professionally, socially, kind of all those angles. And for unfortunately what seemed to be an innocent virus just really derailed that life script,” he said.
It all started with an infection in April of 2017.
He started experiencing crushing exhaustion, exhaustion that felt like he’d been poisoned.
His brain fog started impacting work- he’d get an email and while he could physically see the words on the computer, he couldn’t retain or process anything the same way anymore.
“For me, this is a very scary thing, right? I think when your body's feeling like you're failing you,” he said.
He was repeatedly dismissed as anxious.
In November, 2017, he was finally diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, as well as POTS, or Postural Orthostatic Tachycardia Syndrome.
If he paced himself carefully, he could still manage some household activities. He tried to hold on to his job for as long as he could but eventually, he couldn’t do it anymore.
When the pandemic first hit, he was volunteering at an advocacy organization called ME Action.
“They sounded the alarm pretty quick, saying, if this is really a worldwide pandemic with a very infectious pathogen, there could be a wake of these post infectious illnesses that, unfortunately, are just very much abandoned by the medical silos,” he said.
After Hanlon’s second COVID-19 infection, his condition deteriorated further and he was diagnosed with long COVID.
“ I just haven't been able to bounce back to even my previous baseline,” he said.
He said it’s been devastating.
“I was used to a normal of what that looked like, like, yeah, I couldn't work. But I still had, I knew how many steps a day I could take on, I knew, you know, how I could try to pace those. And it just was a drastic change than the last, really since 2021. It's a far more measured life, it's a far, everything has to be so monitored, because it feels so restricted. So for me, now, I advocate just to try to get my life back,” he said.
The CDC estimates that 25% of long COVID patients report experiencing significant limitations in their day.
Anyone who was infected with COVID-19 can develop long COVID, from elderly people to children.
Some people recover within a few months, but others, like Hanlon, are disabled from the condition.
Symptoms are far ranging but many experience debilitating fatigue, shortness of breath, brain fog, headaches, dizziness, and more.
Dr. Pam Taub is a cardiologist and professor of medicine at UC San Diego in La Jolla, California.
“Among the 60% of US adults who have had COVID, about 3 out of 10 have some long COVID symptoms. And so that's a very high number of people that have persistent symptoms. So further research is needed,” she said.
She’s doing research on a drug called Ivabradine that reduces heart rates and could be used to help patients who have long COVID-induced POTS.
As far as treatment of long COVID goes, she explained that patients already have an elevated heart rate, so normal exercise can make their symptoms worse.
Instead, they should exercise in non-upright positions, work on strength training, and over time, they’ll hopefully build their tolerance.
“One of the things I tell people to do, especially if they have other conditions that qualify them for Paxlovid, is if they get a COVID infection, to do Paxlovid with it, because I do think Paxlovid is going to decrease that inflammation,” she said.
Paxlovid is a treatment for COVID-19 that greatly reduces the severity of the disease, although it can cost patients around $1,400 with insurance.
People on Medicaid, Medicare, and those without insurance can get a voucher to cover the costs, but for others, the cost has led to underuse of the lifesaving medication.
If you can’t get Paxlovid, Dr. Taub recommends that you take an anti-inflammatory like ibuprofen to try to reduce your body’s inflammatory response to your infection.
As Director of Advocacy and Outreach for the Minnesota ME/CFS Alliance, Billy Hanlon advocates for long COVID, POTS, ME, and other conditions to get more funding for research.
“We're fighting together for this common goal to just to liberate us all from these insidious diseases, and hopefully, we can get that secured funding that it will take for these breakthroughs, because it will take, you know, hard science that that is necessary to be able to make the advancements that can lead to intervention,” he said.
In April, Senator Bernie Sanders introduced the Long COVID Moonshot Act, which would provide $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to respond to the Long COVID crisis with more urgency.
Hanlon hopes that the Act passes.
“We just hope that, for me, I hang on to hope that this won't be my forever,” he said.
