Reactivated viruses could be to blame for these 17 long-distance COVID riders (2023)

We carry our stories inside our bodies: the broken bone that never really healed, the burn from a baking mishap, the crown over a root canal.

But history tends to repeat itself - and for COVID-19long-distance driver, reactivated viruses are part of this story.

New research sheds light on how latent viral reactivations occur in long-distance runners whofast 30%of COVID-19 patients left with ongoing illnesses and disabilities after their infections.

Scientists already knew that interactions between different viruses can trigger the reactivation of dormant viruses as the cells responsible for keeping them in check engage with the new invader.

However,COVID-19 is long-term inflammationand immunosuppressive properties turn these reactivations into chronic infections that only add to the myriad of symptoms long-distance drivers endure.

Which viruses cause the infections?

The viruses at play here mainly fall under the Herpesviridae family. Most Americans carry a dormant version of the herpes virus. An estimated 87.4% of US adults ages 14 to 49 infected with HSV-2 remain asymptomatic with no clinical diagnosis.More than 95% of adults probably carry the Epstein-Barr virus (EBV).After our immune system defeats a virus from the herpesvirus family, that virus burrows into our nerves and goes into a dormant (latent) state.

Makeda Robinson, MD, PhD, an infectious disease specialist currently studying COVID-19 at Stanford University, said Verywell that the body's T cells keep the herpesviruses in this latent state.

"When you have fewer T cells, it can be harder to control these viruses," Robinson said. "We know that our T-cell levels are significantly reduced during COVID-19 and our ability to fight these herpesviruses as they become more active may be impaired."

In other words, when COVID enters the body, it depletes our T cells, which can allow a herpes virus to be reactivated during the acute phasephase of a COVID infection.

"When you're infected with another virus, that's stress on the body and the immune system, and that can be stress enough to trigger these dormant viruses to replicate," Robinson said, adding that research has shown that especially in EBV “active replication takes place in these cells after COVID.”

Under normal circumstances, our T cells would show up to fight off EBV. But Robinson said that doesn't happen in the case of COVID because not that much of it is circulating in the blood.

Other viruses that can be reactivated

Other documented reactivations include varicella zoster (the virus that causes chickenpox, which can become reactivated and lead toshingles),Epstein-Barr-Virus (EBV)(which causes mononucleosis or "mono"), herpes simplex virus 1 (HSV-1),human herpesvirus 6 (HHV-6), AndZytomegalievirus (CMV).

With EBV and chickenpox, most people remember having had these viruses at some point in their lives (e.g., they remember having chickenpox as a child). Other viruses, such as HHV-6 and CMV, are common but vague and people may not remember having them (especially if they were very young).

In any case, the symptoms that appear in the acute phase of infection may differ from the symptoms that appear in the reactivated phase. People can experience a range of symptoms such as debilitating fatigue, brain fog, visual impairment, skin lesions, tooth loss, autonomic dysfunction, shortness of breath, and more.

These viruses generally do not reactivate and cause severe symptoms unless you become very ill or are taking a drug that suppresses your immune system (immunosuppressants).

Here are a few examples:

• CMV has a high reactivation rate in patients in the intensive care unit (ICU) and is responsible for many ICU deaths.
• The age-related weakening of the immune system leads to a higher incidence of shingles in older adults.
• Chronic EBV is often seen in people with chronic fatigue syndrome (ME/CFS) because (for reasons not fully understood) their immune systems are unable to clear the virus.)

Why do long-distance drivers get reactivated infections?

If previously healthy people get COVID and become long-distance drivers, it could be partly because they areimmunocompromisedand cannot put these viruses back to hibernation. It could also be that they have high levels of inflammation, which keeps the viruses replicating.

There are many different theories about thisHowhappens. For example, some studies show that reactivated, now chronic, EBV infection may underlie some long-lasting COVID symptoms.

As scientists try to determine the exact mechanisms causing these viral reactivations in long-distance carriers and how this might lead to future treatment options, these patients live in the bodies that hold the data. They document their struggles, symptoms and survival mechanisms to rewrite history in the process.

Verywell spoke to 17 long-distance drivers about their experiences of chronic viral reactivations after being infected with COVID-19. Many are still struggling for more than a year after their acute illness.

Here are their stories.

Rachel Robles, 27 (New York City, NY)

“I have not had a symptom-free day since contracting COVID in March 2020. I am now struggling with cognitive symptoms similar to post concussion syndrome.Dysautonomie(dysfunction of the autonomic nervous system), eczema and allergies that can cause breathing difficulties. I was an avid runner before I fell ill, as well as a singer and yoga enthusiast.

My EBV antibody levels were so high after COVID. I checked them for the first time after three months and monitored them every few months. I take famciclovir, an antiviral, to combat this. When I went on it, the first noticeable difference I had was in my breathing. It has improved significantly! However, I am still dealing with releases in my breathing related to hyperventilation syndrome, which is prevalent in many long-term COVD patients.

Cynthia Adinig, 36 (Alexandria, Virginia)

“I was infected with COVID in March 2020. After clearing the infection, I had several episodes of increased heart rate, throat tightness, difficulty swallowing, dizziness, allergic reactions to eating any food, and debilitating fatigue that forced me into a wheelchair.

After several hospitalizations for starvation, dehydration, and malnutrition, my GP tested me for EBV. I was shocked to find that I had extremely high EBV levels. I had no appetite for several months and the glands in my throat were swollen.

Now, more than a full year later, I still have the occasional low-grade fever, fatigue, and persistent sore throat almost every day. Some days I have to gargle with salt water every few hours just to swallow food.

Throughout my journey, I have learned from the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community that welcomed us into the long COVID community. They, too, still have elevated EBV levels 30 years after their initial infection and need to take antiviral medication to keep a sore throat and fatigue at bay. This will be my next course of action as I am desperate for relief from my EBV symptoms.”

Lauren Nichols, 32 (Boston, MA)

“I was dealing with a debilitating long COVID for four months when I felt my symptoms shift from acute to chronic in July 2020. They went from a life-or-death emergency to near-instantaneous paralysis and disability. The fatigue you have in the acute phase of COVID is very different than the fatigue you have in the chronic phase and I think a lot of that is due to the reactivations now that you have this chronic inflammation in your body have and your immune system is running at full speed.

I got answers about my fatigue getting worse when my doctor, who had followed research and learned from ME/CFS, had the foresight to test my EBV antibody levels. In the past, researchers have seen the virus reactivate after [other] viral infections. After I got the results back, my doctor called me and said, "We found a culprit: Your score should be 17.9, but you're 712."

I should have started antivirals immediately but I waited and as luck would have it I had reactivation of shingles in my left eye and trigeminal nerve at my seven month post-COVID point. I am now visually impaired in my left eye.

Almost a year later I had more reactivations: internal shingles again, this time in my neck, spine and base of my brain, as well as a reactivation of HHV-6, which I did not have in September 2020 when the EBV reactivation was discovered. My doctor had reduced my dose of antivirals because we thought that a year later I would be fine to do so, but it only took a few days for these reactivations to reappear.

Decades of data and studies are available to quantify and prove the reality of viral reactivations in immunocompromised and compromised patients, so I don't know why doctors don't think this way when it comes to long COVID.

Christine, 36 (Washington, DC)

Frances Schlatter, 11 (Bennington, VT)

“The past year has been terrible. I can hardly do anything. I was diagnosed with CMV four years ago, which reactivated after contracting COVID last year. Now I am constantly exhausted and have a lot of choking attacks, sore throat, eating disorders, stomach ache, headaches, insomnia, depending on the day and much more. We tried to treat the reactivated viruses with a naturopath in autumn 2020, but nothing really changed.”

Holly Graf, 30 (Salem, OR)

"When I first got sick with COVID, I had pain along the nerve that runs from the left side of my neck to my ear. I knew the shingles had been reactivated. Adding to my upbringing, my illness, and not being able to go to the bathroom without supplemental oxygen, my head was burning, the shingles rash came on, and I had a terrible headache.

Then the rash was gone for six months. However, when I contracted COVID the second time, I took antivirals from day one, just in case. But thanks to COVID, shingles was back in my life. No other virus, cold or flu has done that to me. Every time COVID or the COVID vaccine shows up, I flare up. I flicker hard

It ruins my immune system and lasts for more than a few painful days. I lose weeks of my life dealing with it and what it leaves behind.”

Mike Heidenberg, 47 (White Plains, New York)

"As far as I know, I've never had mononucleosis, but mine haslaboratory resultsin October (five months after my COVID infection) showed that two of the three markers for EBV, both of which had a standard reference range of 0-17.9, were quite high. One was 66.2 and the other was over 600! This may account for my severe brain fog, cognitive and neurological issues.

I have been taking valacyclovir, an antiviral drug, to try and treat EBV activation. Hope it helps. We're still waiting."

Dana Gosnell, 53 (Vail, Colorado)

“I got COVID in March 2020. It has led to so many complications and symptoms. It triggered HSV-1, so I have constant gum ulcers. I now need four crowns, six fillings and a new one. I also had EBV reactivation and it's impossible to function because I have no energy and I really feel like I'm dying.

I've been to over 60 doctor's appointments. I feel like I'm losing touch with any kind of normal reality. I used to be so fit and on the move, and now I just sit and watch the birds. I haven't been able to work for a year. I feel like finding answers and relief is a full-time job."

Angela, 39 (Washington State)

"I got COVID in February 2020 and still haven't recovered. I have too many symptoms to list, including debilitating fatigue, excruciating chest pain, seizure-like episodes, fever, dementia-like brain fog, hallucinations, ringing in my ears, and more.

Any amount of physical or mental stress affects me and many other long-distance drivers and causes serious accidents.

My EBV blood test was done in May 2021 and the results were positive for reactivated EBV andJohn-Cunningham-Virus. I started an antiviral medication and on June 8th I felt a marked change in my symptoms. I have less fatigue, brain fog, sore throat and fever after exertion, but none of my symptoms have completely gone away. I know that this huge shift was due to the antiviral.

We need to be seen and heard, regardless of our race or gender (yes, this has been an issue for me and other long-distance COVID drivers in care). Appropriate testing is necessary to treat the many people who may be suffering from latent viral reactivations due to COVID.”

Nora Lieberman, 31 (Richmond, Virginia)

“At the age of 18 I got a malignant case of mononucleosis. Now at the age of 31 my doctor thinks I had EBV and CMV reactivation due to a long COVID. My markers for EBV and CMV are both very high. I am so exhausted and my perception is severely impaired. I find it impossible to stick to a task that requires three steps. It's been 15 months."

Jennifer, 49 (Kentucky)

“I became ill with COVID on March 3, 2020. I was discharged, misdiagnosed and denied tests by many doctors from day one.

We struggle every day to survive long COVID while being discharged, misdiagnosed, abused and abandoned. We are battling a disease that has killed over 4 million people worldwide and yet 17 months later doctors are still saying we don't know that much about long COVID and how to test or treat it.

With COVID I had activation/reactivation of human metapneumovirus, CMV, EBV andMolluscum Contagiosum-Virus. I have over 200 reported symptoms and over 100 diagnoses including microbleeds in my brain, obstructive sleep apnea, chronic migraines and eye cell loss that required surgery to correct, ME/CFS, rashes, mouth sores and more.”

Alicia Gaffney, 34 (South Bay Area, Kalifornien)

“My whole family contracted COVID in February 2020. Unfortunately, my toddler and I have suffered from a variety of symptoms ever since. I was diagnosed with EBV reactivation due to my COVID-induced weakened immune system and struggled with severe fatigue, daily hair loss, bloody/green nasal discharge, shortness of breath, blurred vision, sore throat and low-grade fever.”

Rubin Schlatter, 14 (Bennington, VT)

“From April to December 2020 I was on bed rest for between four and seven weeks at a time and could barely sit up or walk down the stairs. We found out I reactivated EBV and Lyme disease due to COVID. My sister and I were both diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).

I also have leg weakness, headache and stomach ache when I stand up. I have a lot of hormones that are low and out of range. I try to rest as much as possible and mostly stay at home, but I still haven't managed to get back to how I used to be. I really hope that I can return to riding again.

I miss being able to think clearly. This makes learning and remembering very difficult.”

Kerri Morrison, 50 (New Orleans, LA)

“I developed rashes related to my COVID infection pretty quickly. On the ninth day, I felt like someone was electrocuting my spinal cord. A few days later I got very itchy rashes under my left arm, near my ribs, and I had a weird lightning ache. At that point I knew it was shingles.

I also found out that my EBV was reactivated from high school. I'm a registered transplant nurse, so I'm familiar with viral reactivations. The total lack of recognition of post-viral syndromes such as EBV or Lyme disease is ridiculous. There is so much data and research that shows this is a serious problem.

I still feel the lightning pain all the time even when there are no blisters (sometimes I still get a slight shingles-like rash). I contracted COVID in March 2020 and have had more symptoms than I can count since then.”

Krista Coombs, 48 (Bennington, VT)

“My two daughters and I have been ill since our COVID infections in early 2020. I have reactivated EBV and CMV which are causing many symptoms. I've had vision problems since the onset of the disease and everything is constantly blurry, whether it's near or far. It really worried me. I've also had numerous headaches like I've never experienced before.

We all felt great before this illness. I had so many new diagnoses and symptoms including orthostatic intolerance, laryngopharyngeal reflux, paresthesia and more.”

Anna Kern, 33 (Ferndale, MI)

“I contracted COVID in April 2021 after being fully vaccinated and appear to be one of the first to show subsequent long-distance symptoms, mostly severe fatigue. I recently noticed that I was a lot more tired than usual and my heart rate went up, then a few days later I developed a rash and chest pains.

I went and had it checked out and was told I had reactivated herpes zoster which I had about seven years ago. It really got to me in terms of fatigue. I was quickly put on antivirals so I think I prevented a lot of the pain but my energy is so low right now and my heart rate was pretty high.

Leigh Jerome, 50 (Brooklyn, NY)

“I contracted COVID-19 on March 5, 2019 and have been ill ever since. I have experienced systemic symptoms including extreme fatigue, insomnia, brain fog, body rashes, tinnitus, body aches, neuropathic pain and general autonomic dysfunction.

My symptoms come in a relapse/remission pattern, and with each new relapse, new symptoms have appeared. In my case, the inflammatory response to coronavirus infection involved EBV reactivation. While I am being treated (with antiviral drugs) for EBV reactivation and am confident that this will aid in my recovery, COVID has long been a complex, multi-system disease.

The limited research and medical attention that has long received COVID and those struggling to recover are grossly inadequate both to draw empirical conclusions and to offer adequate treatment strategies.

There are no current national/global counts of long-lived COVID and the pathophysiology remains unknown. There is no indication of the course of the disease or the proportion of those affected who will recover.

In addition, there is a lack of providers, therapeutics, management strategies, and treatment pathways. Unfortunately, these realities dominate my experience with this devastating disease. I don't know what's happening inside my body, when or if I'll ever recover, and my efforts to find care have been riddled with rejection and apathy."