One in 5. It almost seems unimaginable that this is the real number of people who are struggling with long COVID, especially considering how many people in the US have had COVID-19 at this point (more than 96 million). Yet I continue to hear of people who are struggling, and we continue to see a flood of people in the long COVID clinic. It isn't over, and long COVID is the new pandemic.
Even more unimaginable at this time is that it's happening to me. I've experienced not only the disabling effects of long COVID, but I've also seen, firsthand, the frustration of navigating diagnosis and treatment. It's given me a taste of what millions of other patients are going through.
Vaxxed, Masked, and (Too) Relaxed
I caught COVID-19 (probably Omicron BA.5) that presented as sniffles, making me think it was probably just allergies. However, my resting heart rate was up on my Garmin watch, so of course I got tested and was positive.
With my symptoms virtually nonexistent, it seemed, at the time, merely an inconvenience because I was forced to isolate away from family and friends, who all stayed negative.
But 2 weeks later, I began to have urticaria — hives — after physical exertion. Did that mean my mast cells were angry? There's some evidence these immune cells become overactivated in some patients with COVID. Next, I began to experience lightheadedness and the rapid heartbeat of tachycardia. The tachycardia was especially bad any time I physically exerted myself, including on a walk. Imagine me — a lover of all bargain shopping — cutting short a trip to the outlet mall on a particularly bad day when my heart rate was 140 after taking just a few steps. This was orthostatic intolerance.
Then came the severe worsening of my migraines — which are often vestibular, making me nauseated and dizzy on top of the throbbing.
I was of course familiar with these symptoms, as professor and chair of the Department of Rehabilitation Medicine at the Joe R. and Teresa Lozano Long School of Medicine at University of Texas Health Science Center San Antonio. I developed a post-COVID recovery clinic to help patients.
So I knew about postexertional malaise (PEM) and postexertional symptom exacerbation (PESE), but I was now experiencing these distressing symptoms firsthand.
Clinicians really need to look for this cardinal sign of long COVID as well as evidence of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). ME/CFS is marked by exacerbation of fatigue or symptoms after an activity that could previously be done without these aftereffects. In my case, as an All-American Masters miler with several marathons under my belt, running 5 miles is a walk in the park. But now, I pay for those 5 miles for the rest of the day on the couch or with palpitations, dizziness, and fatigue the following day. Busy clinic day full of procedures? I would have to be sitting by the end of it. Bed by 9 PM was not always early enough.
Becoming a Statistic
Here I am, one of the leading experts in the country on caring for people with long COVID, featured in the national news and having testified in front of Congress, and now I am part of that lived experience. Me — a healthy athlete, with no comorbidities, a normal BMI, vaccinated and boosted, and after an almost asymptomatic bout of COVID-19, a victim to long COVID.
You just never know how your body is going to react. Neuroinflammation occurred in studies with mice with mild respiratory COVID, and could be happening to me. I did not want a chronic immune-mediated vasculopathy.
So, I did what any other hyperaware physician-researcher would do. I enrolled in the RECOVER trial — a study my own institution is taking part in and one that I recommend to my own patients.
I also decided that I need to access care and not just ignore my symptoms or try to treat them myself.
That's when things got difficult. There was a wait of at least a month to see my primary care provider — but I was able to use my privileged position as a physician to get in sooner.
My provider said that she had limited knowledge of long COVID, and she hesitated to order some of the tests and treatments that I recommended because they were not yet considered standard of care. I can understand the hesitation. It is engrained in medical education to follow evidence based on the highest-quality research studies. We are slowly learning more about long COVID, but acknowledging the learning curve offers little to patients who need help now.
This has made me realize that we cannot wait on an evidence-based approach — which can take decades to develop — while people are suffering. And it's important that everyone on the front line learn about some of the manifestations and disease management of long COVID.
I left this first physician visit feeling more defeated than anything and decided to try to push through. That, I quickly realized, was not the right thing to do.
So again, after a couple of significant crashes and days of severe migraines, I phoned a friend: Ratna Bhavaraju-Sanka, MD, the amazing neurologist who treats patients with long COVID alongside me. She squeezed me in on a non-clinic day. Again, I had the privilege to see a specialist most people wait half a year to see. I was diagnosed with both autonomic dysfunction and intractable migraine.
She ordered some intravenous (IV) fluids and IV magnesium that would probably help both. But then another obstacle arose. My institution's infusion center is focused on patients with cancer, and I was unable to schedule treatments there.
Luckily, I knew about the concierge mobile IV hydration therapy companies that come to your house — mostly offering a hangover treatment service. And I am thankful that I had the health literacy and financial ability to pay for some fluids at home.
On another particularly bad day, I phoned other friends — higher-ups at the hospital — who expedited a slot at the hospital infusion center and approval for the IV magnesium.
Thanks to my access, knowledge, and other privileges, I got fairly quick if imperfect care, enrolled in a research trial, and received medications. I knew to pace myself. The vast majority of others with long COVID lack these advantages.
The Patient With Long COVID
Things I have learned that others can learn, too:
Acknowledge and recognize that long COVID is a disease that is affecting 1 in 5 Americans who catch COVID. Many look completely "normal on the outside." Please listen to your patients.
Autonomic dysfunction is a common manifestation of long COVID. A 10-minute stand test goes a long way in diagnosing this condition, according to this consensus statement from the American Academy of Physical Medicine and Rehabilitation. It is not just anxiety.
"That's only in research" is dismissive and harmful. Think outside the box. Follow guidelines. Consider encouraging patients to sign up for trials.
Screen for PEM/PESE, and teach your patients to pace themselves because pushing through it or doing graded exercises will be harmful.
We need to train more physicians to treat postacute sequelae of SARS-CoV-2 infection (PASC) and other postinfectious conditions, such as ME/CFS.
If long COVID is hard for physicians to understand and deal with, imagine how difficult it is for patients with no expertise in this area.
It is exponentially harder for those with fewer resources, time, and health literacy. My lived experience with long COVID has shown me that being a patient is never easy. You put your body and fate into the hands of trusted professionals and expect validation and assistance, not gaslighting or gatekeeping.
Along with millions of others, I am tired of waiting.
Lead image: iStock/Getty Images
Image 1: Monica Verduzco Gutierrez, MD
Medscape Infectious Diseases © 2022 WebMD, LLC
Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
Cite this: Monica Verduzco Gutierrez. I'm a Physician Battling Long COVID. I Can Assure You It's Real - Medscape - Oct 27, 2022.