What is Long COVID?

10-30% of people infected with COVID-19 will experience persisting problems. Symptoms that last for more than 2 months after COVID-19 infection are referred to as “long COVID” or “post-acute sequelae of SARS-CoV-2 (PASC).”

The most common symptoms are fatigue, pain, trouble concentrating, shortness of breath, dizziness, racing heart rate, and gastrointestinal problems. There are a number of other potential symptoms that include numbness, headaches, sensitivity to light and sound, fevers, rashes, and reactions to foods and other exposures. Symptoms may fluctuate or relapse over time. Similar symptoms can develop after COVID vaccine in some individuals who have never had a COVID-19 infection.

Currently, no one is sure what causes long COVID. The most popular theories are persisting viral infection, persisting inflammation, or damage to small blood vessels from abnormal blood clotting. Different patients may have different causes for their long COVID or more than one of these causes may be playing a role.

Multiple studies suggest that a type of white blood cell called mast cells play a role in long COVID. Mast cells release histamine and other chemicals that can affect a person’s immune system and can cause the symptoms that occur in long COVID. In many individuals with long COVID, there is evidence of a pre-existing dysfunction of mast cells. This may explain why some people develop long COVID after infection.

What is Long COVID presented by Dr. David Saperstein

Why Does the Center Treat Long COVID?

Long COVID can be frustrating because, despite having many symptoms, patients often have normal results on routine tests such as blood work, EKG, echocardiogram, and radiological scans. However, there are specialized tests that will usually show problems in those with long COVID. In particular, autonomic testing often shows abnormal changes in heart rate, blood pressure, or blood flow. Recent studies at several medical schools have shown that patients with long COVID frequently will have abnormal results on autonomic testing, exercise testing (which measures how well the body utilizes oxygen), and skin biopsy measurement of small nerve fibers. In addition, specialized blood and urine tests can identify problems with mast cells or the immune system.

These tests can all be performed at the Center for Complex Neurology, EDS & POTS. In many cases, we are the only center in Arizona that performs some of these tests. Prior to the COVID pandemic, the providers at the Center have been diagnosing and treating disorders of the autonomic nervous system, mast cells, and small nerve fibers. Therefore, we have the knowledge and tools to help patients with long COVID.

It is quite common for us to see patients who have been to multiple doctors and were told there was nothing wrong, or no diagnosis could not be determined. It is common for patients to be shuffled among multiple different specialists.

What to Expect at Your Appointment

At your first appointment, you will be seen by one of our specially trained physician assistants. They will review your symptoms and previous testing and examine you. They will determine which tests should be obtained to identify the underlying causes of your symptoms. Every week the entire team – the physician assistants and Dr. Saperstein – will discuss cases.

Depending on the specifics of your case, testing may include autonomic testing, transcranial doppler to measure blood flow to the brain, exercise testing to measure oxygen utilization by muscles and other tissues, nerve conduction studies, skin biopsy to assess small nerve fibers, electroencephalogram (EEG), brain MRI, and blood and urine testing at specialized labs.

After testing is completed, you will follow up with the physician assistant and discuss treatment options. Treatment options may include medications to treat autonomic dysfunction, mast cell disorders, and immune system dysfunction.

Based on our experience in helping patients with poorly understood conditions such as dysautonomia, chronic fatigue, mast cell activation syndrome, and small fiber neuropathy we are confident we can help you by finding answers needed to guide your treatment.

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Frequently Asked Questions

(from our social media followers)

Can shortness of breath be helped in Long COVID?

It depends on what is causing the shortness of breath.

Other than post COVID onset, is there any difference in post-COVID POTS and POTS? Does post-COVID POTS go away over time?

Right now we are not sure if there is a difference. Post-COVID POTS can resolve on its own. We do not know why this happens in some people but not others.