6 On Your Side: Consumer Confidence, Tips to Navigate Long COVID

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(ABC 6 NEWS) – We’re learning more about what’s called long COVID, where patients report debilitating symptoms lasting weeks or even months.

Although a billion dollars is being spent on research, some patients say it’s still hard to convince doctors their symptoms are real.

For years, seventy-two year old Louise Salant had her asthma and acid reflux disease under control. But that changed when she got COVID in March of 2020.

“I could never get a full breath. I felt I was going to die,” Salant said.

Hit by debilitating fatigue, Louise spent weeks in bed. Her inhalers barely worked. COVID aggravated a condition related to her acid reflux so badly, she had to have life-saving surgery – but her problems persisted.

More than two and a half years later, Louise is like the estimated tens of millions of people affected by Long COVID. And although there’s no test for it, the CDC now recognizes it as an emerging condition, and has released guidance for doctors to help treat patients.

“Tell your doctor about your symptoms – like fatigue, brain fog, breathing issues, stomach issues. They may also refer you to a specialist – For example – if you have heart palpitations, they may suggest you see a cardiologist,” Kevin Loria, Consumer Reports Health Editor said.

Also, look for a Long COVID clinic at a hospital or university, and seek out support groups. Survivor Corps, Body Politic, and Long COVID Alliance can help connect you with providers – and people who are experiencing the same thing.

“If your daily activities are substantially limited, you can try applying for disability benefits which may offer some protections, like job leave,” Loria said.

And make sure your doctor knows the diagnostic code for Long COVID – U09.9. That way, insurance may be more likely to cover costs.

While Louise’s insurance covers her new inhaler – her copay is still costly – nearly 400-dollars for a 3 month supply.

Her quality of life over the last 17 months has improved – she can now resume normal activity on a given day – but she has to recover in bed all day the next.

“I made it through and I’m improving. I am grateful to be alive,” Salant said.