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Think You Have Long COVID? See Your Primary Care Doc First

September 2, 2022 – Many patients dealing with debilitating long-term COVID symptoms that interfere with their daily lives may be tempted to go straight to a specialist — be it a pulmonologist for breathing difficulties or a physiologist for muscle fatigue — to to see if they have COVID for a long time. But medical experts — including many specialists who treat the most complex long-term COVID cases — recommend starting in a different place: primary care.

“Their primary care physicians are often the most knowledgeable about the patient’s full medical history, and that context is important when diagnosing someone with long-term COVID,” says Benjamin AbramoffMD, who leads the long COVID collaboration for the American Academy of Physical Medicine and Rehabilitation.

Primary care providers have been on the front lines in diagnosing long-term COVID since the early months of the pandemic, as it became clear that a large number of patients had lingering symptoms for many weeks after their original COVID-19 infections cleared up.

An early guide to diagnosing long-term primary care COVID, published in the BMJ in August 2020, estimated that 1 in 10 patients had long-term illness after COVID infections. That estimate now seems low. A July 2022 report from the CDC found that 1 in 5 people infected with the virus currently have long-term COVID symptoms.

Diagnosing long-term COVID has been challenging, as there is no easy way to screen for the condition and no single set of symptoms that definitively lead to the correct diagnosis. Primary care providers, who often do sleuthing to figure out what conditions might explain patients’ health complaints, are well positioned to cast a wide net in investigating possible reasons for the complex mix of symptoms associated with the course of long-term covid.

Symptoms of prolonged COVID include fatigue, a cough that won’t go away, shortness of breath, lack of smell or taste, difficulty focusing, insomnia, sexual dysfunction, chest pain and dizziness, among others. Kristin EnglundMD, director of the Cleveland Clinic Recovery Clinicwho treats long-term COVID patients.

Given how complex this is, there are many good reasons to get a primary care diagnosis, experts say.

Easier access to care is an important reason. Primary care providers are usually closer to the patient’s home and many make time to see sick patients quickly. Specialized clinics dedicated to long-term COVID care are usually concentrated in academic medical centers in major cities and can have a long wait for new patients. The sooner patients are seen, the sooner they can begin receiving care for symptoms that interfere with their daily lives.

A GP who knows the patient well may be able to better distinguish symptoms unique to the COVID infection from old health problems that are resurfacing.

“Working with a primary care provider can prevent unwarranted and expensive diagnostic testing at first,” says Kathleen BellMD, a neurorehabilitation specialist at the University of Texas Southwestern O’Donnell Brain Institute, who helped establish their COVID recovery program. “Patients should always begin researching health care questions with their primary care physician.”

Even if many experts agree that primary care is the best place for a lengthy COVID diagnosis, they also agree that the process is imperfect and not all of these doctors are up to the task. There are no evidence-based guidelines for diagnosing long-term COVID. And sometimes this diagnosis can be overlooked in primary care, especially when symptoms are very similar to other chronic health conditions that are more common during the pandemic, such as depression, burnout and chronic fatigue.

When patients show up with too many unexplained symptoms, primary care providers may also choose to refer patients to local specialists who can investigate each issue individually, says Alba Miranda AzolaMD, co-director of the post-acute COVID-19 team at Johns Hopkins University School of Medicine.

“What actually happens sometimes is patients see their primary care provider, they come in, they have 15 minutes, and they rant about all these symptoms that are multi-systemic,” she says. “The primary care provider doesn’t have time to deal with all these symptoms — it’s gastroenterology and cardiology and neurology — and they refer to all these different specialists.”

While referrals often help get patients correctly diagnosed, it doesn’t always work because not all of these specialists have experience diagnosing long-term COVID, Azola says. “They see the cardiologist who says all the tests are okay and I can’t help you. Then it’s the same with all the different specialists.”

Patients who have long suspected COVID but do not receive this diagnosis despite persistent symptoms may want to visit a specialist pulmonary COVID clinic for a second opinion, says Monica Verduzco-GutierrezMD, chair of rehabilitation medicine and director of the COVID-19 Recovery Clinic at the University of Texas Health Science Center at San Antonio.

“If the primary care provider has limited knowledge on the subject or limited options for treatments, or in the case where patients may become more chronic and have multiple conditions and symptoms to treat, this is where a multidisciplinary long-term COVID clinic would be a solution. excellent option,” she says.

Lung COVID can be diagnosed if patients have persistent symptoms four weeks after the onset of infection, according to the CDC. Many specialist long-term COVID clinics focus on more serious, complex cases and will not see patients unless their symptoms do not resolve for at least 3 months.

This makes sense, given that many long-term COVID patients can be effectively diagnosed and treated in primary care, says, Tochi Iroku-Malize, MD, founder and professor of family medicine for the Donald and Barbara Zucker School of Medicine in Hofstra/Northwell. And primary care remains the best place for patients to go when they have worrisome, unexplained symptoms — long-term COVID or not.

“As the healthcare community continues to learn about long-term COVID, it’s important to start with a healthcare provider you know and trust — your primary care physician,” she says.

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