For These 17 COVID Long Haulers, Reactivated Viruses May Be to Blame

We carry our histories in our bodies: the broken bone that never properly healed, the burn from a baking mishap, the crown over a root canal.

But history tends to repeat itself—and for COVID-19 long-haulers, reactivated viruses are part of that story.

New research is shining a light on how latent viral reactivations occur in long-haulers, the nearly 30% of COVID-19 patients who are left with lingering diseases and disabilities following their infections.

Scientists already knew that interactions between different viruses can trigger the reactivation of dormant viruses, as the cells responsible for keeping them at bay become preoccupied with the new invader.

However, COVID-19’s long-term inflammatory and immunosuppressive qualities are allowing these reactivations to turn into chronic infections, only adding to the host of symptoms long-haulers are forced to endure.

Which Viruses Cause the Infections?

The viruses at play here mainly fall under the Herpesviridae family. Most Americans carry a dormant version of herpesviruses. An estimated 87.4% of U.S. adults aged 14 to 49 years infected with HSV-2 remain asymptomatic with no clinical diagnosis. Likely over 95% of adults carry Epstein-Barr virus (EBV). After our immune system defeats any virus in the herpes virus family, that virus will burrow into our nerves and go into a dormant (latent) state.

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

"If you have fewer T cells, it can be more difficult to control these viruses," Robinson said. "We know that during COVID-19, our level of T cells is reduced significantly and our ability to fight these Herpesviruses if they become more active may be impaired."

In other words, when COVID gets into the body it depletes our T cells, which can allow for reactivation of a herpes virus during the acute phase of a COVID infection.

"If you're infected with another virus, that’s a stress to the body and immune system and that may be enough of a stress to trigger replication of these dormant viruses," said Robinson, adding that research has shown that with EBV, specifically, "there is active replication in those cells post-COVID."

Under normal circumstances, our T-cells would show up to fight off EBV. But Robinson said that in the case of COVID, that does not happen because there are not as many of them circulating in the blood.

Other Viruses That Can Get Reactivated

Other documented reactivations include varicella-zoster (the virus that causes chickenpox, which can reactivate and lead to shingles), Epstein-Barr virus (EBV) (which triggers mononucleosis or "mono"), herpes simplex virus 1 (HSV-1), human herpesvirus 6 (HHV-6), and cytomegalovirus (CMV).

With EBV and chickenpox, most people remember having these viruses at some point in their lives (for example, they remember having chickenpox as a kid). Other viruses, like HHV-6 and CMV, are common but vaguer, and people might not remember getting sick with them (especially if they were very young).

In either case, the symptoms that occur in the acute phase of the infection can be different from the symptoms that occur in the reactivated phase. People may 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 strong symptoms unless you get very sick or are taking a medication that suppresses your immune system (immunosuppressant).

Here are a few examples:

• CMV has a high reactivation rate in patients that are in the intensive care unit (ICU) and it is responsible for many ICU deaths.
• The weakening of the immune system from aging makes eye shingles more common in older adults.
• Chronic EBV is often seen in people with chronic fatigue syndrome (ME/CFS) because (for reasons that are not fully understood) their immune systems are unable to clear the virus.)

Why Are Long Haulers Getting Reactivated Infections?

When previously healthy people are getting COVID and becoming long haulers, it might be partly because they are immunocompromised and cannot put these viruses back to the dormant state. It could also be that they have high levels of inflammation that keep the viruses replicating.

There are a lot of different theories on how this happens. For example, some studies are showing that a reactivated, now chronic, EBV infection may underlie some long COVID symptoms.

While scientists try to pinpoint the exact mechanisms that are causing these viral reactivations in long-haulers, as well as how this could lead to future treatment options, these patients live in the bodies that hold the data. They're documenting their struggles, symptoms, and survival mechanisms to rewrite history in the process.

Verywell spoke to 17 long-haulers about their experiences with chronic viral reactivations following infection with COVID-19. Many are still struggling over a year after their acute illness. 

Here are their stories.  

Rachel Robles, 27 (New York City, NY)

"I haven’t had a symptom-free day since I got sick with COVID in March of 2020. I now struggle with cognitive symptoms that resemble post-concussion syndrome, dysautonomia (dysfunction of the autonomic nervous system), eczema, and allergies that can cause difficulty breathing. I was an avid runner before getting sick, as well as a singer and yoga enthusiast.

My EBV antibody levels have been so high post-COVID. I first checked them at the three-month point and monitored them every few months. I’m on Famciclovir, an antiviral, to combat this. When I went on it, the first noticeable difference I had was in my breathing. It improved significantly! I still deal with releases in my breathing related to hyperventilation syndrome though, which is prevalent among many long COVD patients."

Cynthia Adinig, 36 (Alexandria, VA)

“I was infected with COVID in March of 2020. After clearing the infection, I had several episodes of elevated heart rate, throat tightness, trouble swallowing, dizziness, allergic reactions when eating any food, and crippling fatigue which forced me into a wheelchair.

After several hospital admissions for starvation, dehydration, and malnutrition, my primary care physician tested me for EBV. I was shocked to discover I had extremely elevated levels of EBV. For several months, I had no appetite and the glands in my neck were swollen.

Now, more than a full year later, I continue to have an occasional low-grade fever, fatigue, and persistent throat pain nearly every day. Some days I have to gargle with salt water every few hours just to be able to swallow food.

Throughout my journey, I have come to learn from the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community who have embraced us in the long COVID community. They too have elevated EBV levels even 30 years after their initial infection and must take antiviral medicine to keep the throat pain and fatigue at bay. This will be my next course of action, as I am in desperate search of some relief from my EBV symptoms.”

Lauren Nichols, 32 (Boston, MA)

"I was dealing with debilitating long COVID for four months when I felt my symptoms shift from the acute to the chronic in July of 2020. They went from being emergency life-and-death to almost instantly crippling and disabling. The fatigue that you have in the acute phase of COVID is very different from the fatigue you have in the chronic phase, and I think a large part of that is because of the reactivations, as you now have this chronic inflammation within your body and your immune system is in overdrive. 

I got answers about my fatigue worsening when my doctor, who had followed the research and learned from the example of ME/CFS, had the foresight to look into my EBV antibody titers. Historically, 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 level should be at 17.9, but you’re at 712.’ 

I should have started antivirals right away, but I waited, and as fate would have it, at my seven-month post COVID point, I ended up having a reactivation of shingles in my left eye and trigeminal nerve. I’m now visually impaired in my left eye. 

Almost a year later, I ended up having more reactivations: internal shingles again, this time in my neck, spine, and the 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 lowered my dose of antivirals because we thought that a year later it would be OK for me to do that, but it only took a few days for me to have those reactivations surface once again.

There are decades of data and studies available to quantify and prove the reality of viral reactivations in immunocompromised and weakened immune system patients, so I don’t know why doctors aren’t thinking this way when it comes to long COVID.

Christine, 36 (Washington, D.C.)

"I have been disabled from COVID-19 for over a year now. After COVID, I had elevated antibodies to HSV-1, HHV-6, and CMV, indicating that my immune system was not doing as good of a job as it normally does fighting viruses that were previously dormant in my system. I am now mostly housebound and unable to work even part-time. Physical and cognitive impairment make daily life a struggle. 

When we reran some tests in April, my lab results showed new antibodies to EBV early antigens. EBV had reactivated in my body sometime since the last testing in October. It is concerning to me that new problems are arising in my body this long after having COVID-19 due to the virus's effect on my immune system.”

Frances Schlatter, 11 (Bennington, VT)

"This past year has been awful. I can hardly do anything. I was sick four years ago with CMV, which has reactivated after I got COVID last year. Now, I am constantly exhausted and have a lot of choking episodes, sore throats, trouble eating, stomach pains, headaches, difficulty sleeping, and so much more depending on the day. We tried to treat the reactivated viruses in fall 2020 with a naturopath, 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 up to my ear. I knew shingles had reactivated. On top of parenting, being sick, and not being able to walk to the bathroom without supplemental oxygen, my head burned, the shingles rash came, and I had terrifying headaches. 

Then, the rash was gone for six months. However, the second time I caught COVID, I was on antivirals from day one, just in case. But still, thanks to COVID, shingles was in my life again. No other virus, cold, or flu has done this to me. Every time COVID or the COVID vaccine comes around I flare. I flare hard.

It wrecks my immune system and takes more than a few achy days. I lose weeks of my life dealing with it and with what it leaves behind.”

Mike Heidenberg, 47 (White Plains, NY)

“As far as I know, I never had mononucleosis, but my lab results in 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 be responsible for my severe brain fog, cognitive, and neurological issues. 

I've been on Valacyclovir, an antiviral, to try to treat the EBV activation. Hopefully, it’ll help. We’re still waiting to see."

Dana Gosnell, 53 (Vail, CO)

"I got COVID in March of 2020. It has led to so many complications and symptoms. It triggered an HSV-1, so I have constant ulcers on the roof of my mouth. I now need four crowns, six fillings, and a new tooth because of it. I also had an EBV reactivation, and it’s impossible to function because I have zero energy and I really feel like I am dying.

I have been to over 60 medical appointments. I feel I am losing touch with any kind of normal reality. I was so fit before this and always moving, and now I just sit and watch the birds. I haven’t been able to work in a year. I feel like it’s a full-time job trying to find answers and relief."

Angela, 39 (Washington State)

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

Any amount of physical or mental stress affects me and many other long-haulers severely, causing severe crashes. 

My EBV blood test was done in May 2021, and the results came back positive for reactivated EBV and John Cunningham virus. I started an antiviral and started to feel a major shift in my symptoms by June 8. I have less fatigue, brain fog, sore throats, and fevers after exertion, but none of my symptoms have gone entirely away. I know 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 COVID long-haulers in receiving care). Proper testing is necessary to treat the many people that may be suffering latent virus reactivations due to COVID.” 

Nora Lieberman, 31 (Richmond, Virginia) 

“At the age of 18, I came down with a vicious case of mononucleosis. Now, at the age of 31, my doctor believes I’ve been having an EBV and CMV reactivation as a result of long COVID. My markers for EBV and CMV are both very high. I’m so exhausted, and my cognition is severely impaired. Following a task that requires three steps is impossible for me to remember. It’s been 15 months.”

Jennifer, 49 (Kentucky)

“I got sick with COVID on March 3, 2020. I was dismissed, misdiagnosed, and refused testing by many doctors from day one.

We are fighting every day to survive long COVID while being dismissed, misdiagnosed, mistreated, and abandoned. We are fighting a disease that has killed over 4 million people globally, and yet 17 months later doctors still say we don’t know that much about long COVID and don’t know how to test or treat it. 

With COVID, I had an activation/reactivation of human metapneumovirus, CMV, EBV, and molluscum contagiosum virus. I have over 200 reported symptoms and over 100 diagnoses, including microhemorrhages in my brain, obstructive sleep apnea, chronic migraines, and eye cell loss that needed surgery to correct it, ME/CFS, rashes, mouth sores, and more.”

Alicia Gaffney, 34 (South Bay Area, CA)

“My whole family contracted COVID in February of 2020. Unfortunately, my toddler and I have been suffering from a multitude of symptoms since. I have been diagnosed with an EBV reactivation due to my COVID-induced weakened immune system, and have been dealing with severe fatigue, daily hair loss, bloody/green nasal discharge, shortness of breath, blurry vision, sore throat, and low-grade fevers.”

Ruby Schlatter, 14 (Bennington, VT) 

“From April to December of 2020, I was on bed rest anywhere from four to seven weeks at a time and could barely manage to sit up or go downstairs. We found out that because of COVID, I have reactivated EBV and Lyme disease. My sister and I both received a diagnosis of postural orthostatic tachycardia syndrome (POTS).

I also have leg weakness, headaches, and stomach aches 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 been able to go back to how I used to be. I really hope to get back to riding horses again.

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

Kerri Morrison, 50 (New Orleans, LA) 

"I developed rashes pretty rapidly into my COVID infection. On the ninth day, I felt like someone was electrocuting my spinal cord. A few days later, I started having very itchy rashes under my left arm, close to my ribs, as well as having a strange lightning pain. At that point, I knew it was shingles. 

I also found out that my EBV from high school was reactivated. I work as a registered nurse in transplants, so I’m familiar with viral reactivations. The complete lack of acknowledgment of post-viral syndromes such as EBV or Lyme is ridiculous. There is so much data and research to show that this is a serious problem. 

I still feel the lightning pain all the time, even if there are no blisters (sometimes I still get a  mild shingles-like rash). I got COVID in March of 2020, and have had more symptoms than I can count ever since.”

Krista Coombs, 48 (Bennington, VT)

“My two daughters and I have been sick since our COVID infections in early 2020. I have reactivated EBV and CMV which cause many symptoms. I have had vision problems since the beginning of getting sick and everything is constantly blurry, whether it's near or far. It has been really concerning to me. I also have had numerous headaches unlike any I have experienced before.

We were all feeling great before this sickness. I have had so many new diagnoses and symptoms including orthostatic intolerance, laryngopharyngeal reflux, paraesthesias, and more.”

Anna Kern, 33 (Ferndale, MI)

“I got COVID in April of 2021 after having been fully vaccinated, and seem to be one of the first with long-haul symptoms following it, predominantly profound fatigue. Recently, I noticed I was much more tired than usual and my heart rate was up, then a few days later I developed a rash and chest pain.

I went and got it checked out and learned that I had reactivated shingles, which I’d had about seven years ago. It’s really taken a lot out of me, as far as fatigue goes. I got on antivirals fast, so I think I prevented a lot of the pain, but my energy is so low right now, and my heart rate has been quite high.”

Leigh Jerome, 50 (Brooklyn, NY)

"I became ill with COVID-19 on March 5, 2019, and have been sick ever since. I have experienced systemic symptomatology including extreme fatigue, insomnia, brain fog, full-body rashes, tinnitus, body aches, neuropathic pain, and overall autonomic dysfunction. 

Symptoms occur for me in a pattern of relapse/remission and new symptoms have emerged with every new relapse. In my case, the inflammatory response to the coronavirus infection included an EBV reactivation. While I am being treated for the EBV reactivation (with antiviral medication) and feel confident that it will aid in my recovery, long COVID is a complex multi-system illness.

The limited research and medical attention that long COVID and those struggling to recover have received are completely insufficient both in terms of drawing empirical conclusions and offering adequate treatment strategies.

There are no current national/global counts of long COVID and the pathophysiology remains unknown. No guidance is available regarding the disease course or what proportion of sufferers will recover.

Furthermore, there is a paucity of providers, therapeutics, management strategies, and care pathways. Unfortunately, these realities dominate my experience with this devastating disease. I don’t know what is happening in my body, when or if I will ever recover, and my efforts to find care have been peppered with dismissal and apathy."

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.