Idaho State Journal
Editor’s note: The Idaho State Journal’s two-part series on COVID-19 long haulers continues today. Read both stories online at idahostatejournal.com.
Rigby resident Travis Smith was relieved to learn there were others like him who were still experiencing COVID-19 symptoms long after they should have recovered from the virus.
It helped him to know he wasn’t crazy and the doctors who dismissed his ongoing symptoms — tachycardia, fatigue, shortness of breath and a diminished sense of taste and smell — didn’t necessarily have all the answers when it came to understanding, let alone treating, the long-term and widely varying effects of COVID-19.
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“I don’t fault them. It’s a novel virus and they were learning as I was learning,” Smith said.
Still, he believes it’s important for doctors and patients with lingering health complications related to COVID-19 to work together to find answers.
That’s one of the reasons why he started the “Idaho COVID Long Haulers” Facebook group. It not only gives long haulers a support group when it comes to dealing with their symptoms, but it also gives them a place to share resources and learn how to advocate for their medical treatment.
“There is power behind numbers. The more we get with us, the more of a voice we have when talking to doctors, hospitals and state legislators,” Smith said. “We can bring awareness to our cause and make sure we have the appropriate resources there.”
Based on some research estimates, anywhere from 3 million to 10 million Americans could be dealing with prolonged COVID-19 symptoms. They’re known as long haulers.
Currently, there aren’t a lot of resources out there to help them or the doctors trying to treat them. But efforts to change that are underway.
For instance, Johns Hopkins Bloomberg School of Public Health is conducting a COVID Long Study. Researchers have posted a survey at covid-long.com and are asking those who’ve had COVID-19 to share their experiences. They’re hoping to survey 25,000 people.
“Some people infected with COVID-19 continue to experience symptoms after they have recovered from their initial infection, while others do not. Because COVID-19 is a new virus, we don’t yet know why people have different responses to this virus,” the website states. “We also don’t know how many people have long-term symptoms, how many people have symptoms that clear and how many people have no symptoms. All of this is important for us to understand.”
Dr. Chip Roser, of Saint Alphonsus’s COVID-19 Care Clinic in Boise, one of the few organizations in Idaho that specifically treats long haulers, agrees that more information is needed. He says one of the biggest challenges doctors face right now is that this is a new disease and there aren’t many evidence-based studies to guide therapies.
“This will be changing rapidly as more clinical studies are completed and their results become available,” Roser wrote in an email response to the Journal.
In the meantime, some long haulers have struggled to get the help they need.
“I think with any new disease process there is a learning curve in the medical community and some providers do discount patient symptoms and experiences. I have heard repeatedly that people have not (been) listened to or have been dismissed,” Roser wrote. “As more providers gain additional experience this has become less true.”
Smith was one of those people who struggled to get help — one of the reasons why he’s advocating for other long haulers now.
He said COVID-19 exacerbated his preexisting supraventricular tachycardia — which is an abnormally fast heartbeat. He went from having a couple of episodes a year to as many as five a week.
Smith said his doctor at the time didn’t really understand COVID-19 or why a 30-year-old hadn’t been able to shed the virus.
Smith eventually went to see a cardiologist who was able to offer more help.
Some long haulers who got sick before COVID-19 tests were readily available have also struggled to convince doctors their symptoms are associated with the virus since they were never tested.
Eagle residents Shannon Campbell and her 14-year-old daughter, Lainey Dougal, fall into that category. Both were healthy and active before they suddenly got sick in February of 2020.
They tested negative for influenza and strep throat at that time, but were never tested for COVID-19. Still, they had many of the symptoms.
“I was lethargic. I couldn’t taste, my nose was stuffed, my throat hurt. I couldn’t breathe well,” Dougal said, adding that she also experienced chills and hot flashes at times. “I had a fever and a bad headache.”
It took the teen three weeks to recover, and three months later, her symptoms returned. More than a year later, she’s still struggling to breathe. She has tachycardia and insomnia.
Dougal is also dealing with a depersonalization-derealization disorder, which “occurs when you persistently or repeatedly have the feeling that you’re observing yourself from outside your body or you have a sense that things around you aren’t real, or both,” according to mayoclinic.org.
Dougal says it’s a defense mechanism that started when her symptoms returned and she had a panic attack.
Her mother has also experienced a myriad of ongoing symptoms, including dizziness, vertigo, tingling sensations on the right side of her body, heart palpitations, difficulty breathing and brain fog.
While it can be difficult to figure out which symptoms are actually associated with COVID-19, Roser encourages medical providers to listen to their patients and keep an open mind — especially in a new and emerging field.
“Medical providers should keep an open mind and trust their patients to tell them what is bothering them the most and work together to facilitate recovery,” he wrote.
Roser estimates that 75 to 80 percent of the people they treat at their clinic are long haulers.
The most common symptoms they see are fatigue, shortness of breath, cough, neurocognitive deficits (brain fog), chest pain, tachycardia, loss of taste and smell, and either a worsening of mood disorders or an initial presentation of them, Roser said. They also see muscle aches and joint pain on occasion.
“It is quite challenging to sort through the symptoms as they are quite diverse,” Roser wrote. “The initial process involves ensuring that the patient does not have any of the known serious complications from COVID like chronic lung disease, heart damage, blood clots. From there we focus on treating the individual medical problems.”
But it’s not always easy to get to the root of those issues.
Pocatello resident Zac Gershberg experienced ongoing chest pain and other symptoms after his bout with COVID-19 in November. He followed up with a cardiologist and a pulmonologist and went through several tests, but they all came back clean.
Campbell went through several tests, but they all came back normal.
“There is a subset of people, who once we do all the testing on their heart and for blood clots and for pneumonia, we don’t have a great answer for them,” said Dr. Jordon Marshall, who works primarily in the emergency department at Portneuf Medical Center in Pocatello.
“Physically there’s something there, we just can’t measure it, unfortunately,” he said.
“Some patients have easily identifiable medical problems (pulmonary fibrosis, abnormal heart rhythms, etc) for others it is much more difficult to come up with (an) objective finding,” Roser wrote. “Often these patients have symptoms consistent with autonomic dysfunction (racing heart rate without a stimulus, symptoms of shortness of breath and neurocognitive dysfunction). For these clinical symptoms there is very little in the way of objective findings.”
That can be frustrating for doctors as well as patients who are looking for answers.
“People are frequently very worried about their symptoms and the uncertainty of not knowing when they will get better,” Roser said.
He advises patients to take the long view and look at their symptoms from week to week or even month to month rather than day to day.
“There is a tendency to push through the symptoms and try and get back to normal,” he wrote. “People who are good about self-care, practicing deep breathing exercises, using gentle exercise and rest so as not to provoke their symptoms tend to have a steadier progress toward recovery.”
While there aren’t any clinics specifically for long haulers in the Pocatello area, Marshall says there are cardiologists, pulmonologists and other specialists who can help people with their symptoms. He encourages long haulers to reach out to those most likely to be able to help with their conditions.
“This is a new thing for everybody,” Marshall said, adding that, hopefully, more resources will be developed in the future.
As research continues on the long-term effects of COVID-19, some long haulers are finding hope in the vaccine.
Gershberg says he started feeling better after he got the vaccine. His long hauler symptoms basically disappeared.
“I consider myself very fortunate and very lucky,” Gershberg said. “I don’t know whether it was truly the vaccine, but it seems to have been. It improved my life considerably since I received it.”
While not all long haulers have recovered after getting the vaccine, some, like Gershberg, have.
Still, the Centers for Disease Control and Prevention say more studies are needed to determine the effects of the vaccine on post-COVID conditions.