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

What Is a Latent Viral Reactivation?

Which Viruses Cause the Infections?

long covid stories - patient faces in a grid

Verywell / Paola de Varona

The viruses at play here mainly fall under the Herpesviridae family.

Most Americans carry a dormant version of herpesviruses.

Under normal circumstances, our T-cells would show up to fight off EBV.

Rachel

The condition is generally mild and does not cause long-term problems.

Here are a few examples:

Why Are Long Haulers Getting Reactivated Infections?

It could also be that they have high levels of inflammation that keep the viruses replicating.

Cynthia

There are a lot of different theories onhowthis happens.

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.

Lauren Nichols

Many are still struggling over a year after their acute illness.

Here are their stories.

I was an avid runner before getting sick, as well as a singer and yoga enthusiast.

Christine

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.

Im on Famciclovir, an antiviral, to combat this.

Frances Schlatter

When I went on it, the first noticeable difference I had was in my breathing.

How Would You Know If You’ve Had EBV?

If your titer levels are high, that means you have had a reactivation of EBV.

Holly

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.

Some days I have to gargle with salt water every few hours just to be able to swallow food.

Mike

They went from being emergency life-and-death to almost instantly crippling and disabling.

Historically, researchers have seen the virus reactivate after [other] viral infections.

Im now visually impaired in my left eye.

Dana

No long COVID patient is making this is up.

I am now mostly housebound and unable to work even part-time.

EBV had reactivated in my body sometime since the last testing in October.

Angela

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.

Nora

We tried to treat the reactivated viruses in fall 2020 with a naturopath, but nothing really changed.

I knew shingles had reactivated.

Then, the rash was gone for six months.

Jennifer

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.

Alicia

Whatever COVID does to our bodies, it’s beyond other viruses.

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.

Ruby

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 have a go at treat the EBV activation.

Kerri

Hopefully, itll help.

Were still waiting to see.”

Dana Gosnell, 53 (Vail, CO)

“I got COVID in March of 2020.

Krista

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.

Anna

Im not afraid to die: its this suffering that is unbearable.

I have been to over 60 medical appointments.

I feel I am losing touch with any kind of normal reality.

Leigh

I was so fit before this and always moving, and now I just sit and watch the birds.

I havent been able to work in a year.

I feel like its a full-time job trying to find answers and relief.”

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

I started an antiviral and started to feel a major shift in my symptoms by June 8.

I know this huge shift was due to the antiviral.

Doctors really need to know this is happening due to COVID.

Proper testing is necessary to treat the many people that may be suffering latent virus reactivations due to COVID.

I was dismissed, misdiagnosed, and refused testing by many doctors from day one.

COVID long-haulers didnt die, but we also didnt recover.

We are fighting every day to survive long COVID while being dismissed, misdiagnosed, mistreated, and abandoned.

With COVID, I had an activation/reactivation of human metapneumovirus, CMV, EBV, andmolluscum contagiosum virus.

Unfortunately, my toddler and I have been suffering from a multitude of symptoms since.

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 really hope to get back to riding horses again.

I miss being able to think clearly.

It makes learning and remembering very difficult.

On the ninth day, I felt like someone was electrocuting my spinal cord.

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 Im 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 got COVID in March of 2020, and have had more symptoms than I can count ever since.

I have reactivated EBV and CMV which cause many symptoms.

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.

Its really taken a lot out of me, as far as fatigue goes.

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.

Although research has finally started, long-haulers have long been met with ambivalence by the medical community.

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.

For the most recent updates on COVID-19, visit ourcoronavirus news page.

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