People suffering from long COVID know they have it, but it can be a struggle to convince others. Sometimes all it takes is checking off a list of symptoms and finding the right doctor to listen.
Brain scans, lung checks and a trip to the heart doctor are often what long COVID patients go through before coming to see Dr. Kathleen Haggerty.
"I started this in September of 2020, so I’ve seen a lot of patients with this," said Haggerty, a doctor of internal medicine. "I think the most important thing to do is to listen to the journey that people have been through since they’ve had COVID. It’s important to hear where they’ve been what they’ve done to evaluate them and what symptoms have developed and over what time period they developed."
She specializes in the condition at Lakeland’s Watson Clinic. It’s one of the few places in Tampa Bay and the state focusing on post-COVID recovery.
"People come from all over, some from even outside the state," said Haggerty, who added what message that sends. "I’m only seeing the tip of the iceberg. There are just huge numbers of people out there who are suffering from this problem and can’t quite access this help."
Dr. Haggerty makes sense of the disease for the patient.
"There’s the depression, the headaches, the tiredness, the cognitive changes, and the joint pains, those all can present just in one person," she said.
There is no standard treatment or even test to diagnose the condition, and University of Florida’s Dr. Irene Estores hopes that will change.
"It is in the pipeline. And I say that because there are already some guidance statements on how to at least assess the symptoms," Dr. Irene Estores, who leads UF Health COVID RESTORE Clinic in Gainesville.
Rehabilitation, Support, Training, Outreach and Research Clinic (RESTORE) educates other doctors about the condition while also treating patients.
"So this started about May of 2021, when we started to when I started to notice that there were people who had persistent symptoms after they were supposed to have recovered from COVID, and that was even before we had the Delta variant," said Estores. "So the treatment is really very symptom specific. When they come to the clinic, I asked them to complete what's called a symptom checklist because we know that long-covid has it can present with as many as 200 symptoms."
Some UF Health patients can even sign up for a registry, allowing doctors to reach out and contact them to track their conditions over time. So as medicine figures out long COVID, doctors say one thing is clear.
"I think the most important thing to do is to listen to the journey that people have been through," said Haggerty.
Doctors are still learning a lot about the condition, and they know every patient is different. They said it’s key to keep finding effective treatments that work and are customized to the patient.