Long Covid Alphabet Soup

Long Covid Alphabet Soup

Long Covid comes with a long list of potential side effects — often in acronym form. What do all of those letters mean?

Covid-19 has been part of our lives for nearly three years, and many mysteries still surround it. One of the biggest mysteries: long Covid.

While most people completely recover from Covid-19 within a few weeks, an estimated 10% to one-third continue to struggle with a broad range of symptoms, from chronic fatigue and brain fog (difficulty concentrating, confusion, or disorientation) to gastric upsets and loss of taste and smell. Long-haulers have what’s formally called Post-Acute Sequelae of SARS CoV-2 infection, or PASC. They experience continuing symptoms or new symptoms with no other known cause that continue at least a month after the onset of Covid-19, says José Biller, MD, chair of the department of neurology at Loyola Medicine and lead physician at Loyola Medicine’s Covid-19 neurology clinic.

The severity of the initial Covid-19 infection isn’t a factor in the development of long Covid, Biller adds. People who had severe cases of Covid-19 as well as those with mild infections that never required hospitalization or treatment have both been diagnosed with long Covid.

But it’s important to remember that although Covid-19 remains prominent, other illnesses still exist. “Not all new symptoms after a Covid infection are long Covid,” says Jonathan Radosta, MD, associate professor of clinical medicine at the University of Illinois Chicago and medical director of the Post-Covid Clinic at UI Health. “If you have Covid, you should let your doctor know, as they can discuss treatment options with you as well as vaccination strategies. If you have new symptoms lasting for four weeks after a Covid infection, you should discuss with your doctor to see if you have long Covid.”

Many of long Covid’s serious complications result from persistent inflammation. Inflammation plays a key role in immune response to infection, but if that inflammation persists, it can wear out the body’s systems and cause serious health issues, including DVT, PE, ME/CFS, POTS, CVST, MCAS.

What do all of these acronyms mean? We break down long Covid’s many side effects, along with standard diagnoses and available treatments.

CVST: Cerebral Venous Sinus Thrombosis

What is it? This rare form of stroke results from a blood clot in the brain’s drainage system, preventing blood from leaving the brain. Symptoms include headache, blurred vision, loss of consciousness, seizures, and coma.

Diagnosis: Imaging tests to assess and monitor blood flow in the brain.

Treatment: Fluids, antiseizure medication, blood thinners, and possibly surgery.

DVT: Deep Vein Thrombosis

What is it? A blood clot that develops in a vein deep in the body, usually in the leg. The clot often causes aches and pains, fever, swelling, and redness or warmth. DVT can turn deadly if the clot travels to the lungs and blocks blood flow there (called a pulmonary embolism).

Diagnosis: Imaging tests, such as ultrasound, venography (x-ray with contrast dye), or an MRI or CT scan.

Treatment: Blood thinners or a surgery called venous thrombectomy to break up or remove the clot.

PE: Pulmonary Embolism

What is it? This life-threatening emergency happens when a blood clot travels to the lungs, where it can cut off blood flow. A blood clot in the lungs may cause difficulty breathing, chest pain, increased heart rate, sweating, fainting, and coughing — potentially coughing up blood.

Diagnosis: If you experience these symptoms, go immediately to an emergency room for monitoring and testing, typically blood work and a CT scan.

Treatment: Medication or surgery to break up blood clots and blood thinners to prevent new clots from forming.

MCAS: Mast Cell Activation Syndrome

What is it? Mast cells are immune cells that release chemicals that lead to allergic reactions. In MCAS, those cells are hyperresponsive. The person experiences repeated episodes of anaphylactic symptoms: trouble breathing, hives, swelling, low blood pressure, and gastrointestinal upset.

Diagnosis: Symptom evaluation, blood work to check serum tryptase levels, and 24-hour urine tests to detect a rise in certain markers.

Treatment: Episode-by-episode, usually with epinephrine, antihistamine, or aspirin depending on severity.

ME/CFS: Myalgic encephalomyelitis/chronic fatigue syndrome

What is it? This overwhelming fatigue doesn’t improve with rest. People with ME/CFS have a hard time completing daily tasks, such as showering and preparing meals, keeping jobs or going to school, and taking part in family and social life. Symptoms can last for years and sometimes lead to serious disability. People may also experience problems with thinking or memory, symptoms may worsen when the person stands upright.

Diagnosis: Without diagnostic tests, doctors evaluate symptoms and medical history. People with ME/CFS may need to consult with a specialist such as a neurologist, rheumatologist, or sleep medicine specialist to check for conditions causing similar symptoms.

Treatment: Because there’s no overall treatment or cure, physicians treat ME/CFS symptom-to-symptom. An estimated 25% of people with ME/CFS end up confined to their home or bed for long periods during their illness.

POTS: Postural Orthostatic Tachycardia Syndrome

What is it? POTS is a malfunction of the autonomic nervous system — responsible for heart rate, blood pressure, digestion, perspiration, body temperature, circulation, and respiration. People with POTS have an increased heart rate when standing and often experience other symptoms upon standing, such as lightheadedness, fainting, and blood pooling in the legs. Other common symptoms include fatigue, exercise intolerance, nausea, poor body temperature regulation, tremors, and shortness of breath. Some people with POTS are able to continue with normal daily activities, while others have such severe symptoms that they struggle to sit upright, stand, or walk.

Diagnosis: The tilt table test measures changes in vitals as a person is gradually tilted from a horizontal to upright position, and the sweat test measures sweat volume after a mild electric stimulation.

Treatment: Medication, supplemented by increased fluid and salt intake and compression garments, focuses on increasing blood pressure and volume. Reclined exercises such as rowing and recumbent bicycling may help, as well as avoiding alcohol, extreme heat, and standing for extended periods of time.