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Recurrent Epstein–Barr virus

What is EBV?

EBV (Epstein-Barr virus) belongs to the family of herpesviruses and is the first discovered oncovirus, what means, it can be tumorigenic. Mainly it is spread by droplet infection.

Approximately 90% of humanity had EBV at the age of 40 at the latest. Often it leads to the outbreak of glandular fever.

After infection, the pathogen remains in the body. However, it usually remains inactive.

Possible symptoms

Since there are many different symptoms and not all must be present and strong, this virus often remains undetected and the patient suspects a bad cold or a slightly longer lasting flu infection. Possible symptoms include:

  • fever

  • fatigue

  • inflammation of the throat and tonsils, sometimes with grayish white deposits in the pharynx on the tonsils

  • difficulty swallowing, coughing

  • swollen spleen (can sometimes tear as the disease progresses)

  • swollen lymph nodes

  • swollen liver including poor liver values

  • a rash

  • difficult breathing

  • anorexia

  • dizziness

  • night sweat

  • headache and / or body aches

Duration of the infection and what you should consider

In mild cases it doesn't last longer than 2 weeks, in severe cases it does not stop until after 2 months. However, many still report limitations even after 6 months.

However, during the active infection you should avoid the following things:

  • alcoholic drinks, as the liver is often affected by the virus

  • proximity to pregnant women and newborns, as the virus may have very dangerous effects on these two groups

  • the intake of antibiotics, such as e.g. amoxicillin, as this favors the formation of rashes

Recurrent?

Recurrence means that a disease recurs at intervals, that is, it's not permanently there.

It is very, very unlikely that it will be active again. However, because the EBV is a herpes virus and therefore remains permanently in the body, and a strong weakening of the immune system can lead to the patient's immune system no longer keeping it in check as before.

However, if it breaks out, it does not mean that it's just as hard as the first outbreak. In theory, it will be weaker with each new eruption.

First eruption 2013

In the fall of 2013, after self-referral, I ended up in the intensive care unit of a hospital because my liver values ​​were so bad and I had not been able to keep food or drink for over 48 hours in my body, not even a sip of water.

 

At that point I felt already bad for two weeks and increasingly bad. In the days just prior to hospitalization, I struggled with dizzy spells, severe headaches that did not help with painkillers, nausea, vomiting bile, a swollen face and deposits on the tonsils.

After 2 days and the exclusion of various other herpes diseases, it was finally found out that I had glandular fever. My own general practitioner, after reading the report from the hospital, said, "I'm very surprised you still have your liver, with these bad scores!"

5.5 weeks later I went back to my apprenticeship; more forced than voluntary. Because I dealt still with strong exhaustion and really felt anything but healthy. Even after half a year, my liver values were still very bad and I barely walked faster than a granny on foot.

The time afterwards - anything but tingling

While I had to fight a cold at least twice a year before the first outbreak of the virus - once in spring and once in autumn - and this always maximum for 1.5 weeks everything, now it was different.

Suddenly, I was often sick for 2 or 4 weeks at least. While I used to deal with a cold max. for 3 or 5 days, now I was completely down for at least 2 weeks. And by that I do not mean that I was watching TV or reading books with a hot tea on the sofa, no. It was not uncommon for me to go to the general practitioner for an infusion because I couldn't keep any food. Without my husband, I would not have been able to survive at all, since I was far too weak to just go shopping for food supplies; often I was already completely exhausted from the 4m to the toilet.
 

Increasingly, I doubted my sanity and from colleagues and others, I was allowed to listen too a lot of comments like I wouldn't do enough sports or would eat completely the wrong stuff.

Autumn 2016 - finally someone is listening to me

In the fall of 2015, I moved to Westphalia and finally found a general practitioner who listened to me when I told him that it was anything but typical for me to be sick so often and so severely.

Since I have had been ill for 3.5 weeks and no matter what we did, it just did not get any better, he got a blood test done in the fall of 2016 and finally got the diagnosis: I have the Epstein-Barr virus recurrent.

Finally, everything made sense: the many sick days, never feeling really healthy, the severity of my colds. The first outbreak of EBV has had a lasting impact on my immune system and I seem to have gotten the more severe form of the virus.

Current status

Most recently it was proven to be active in the fall of 2018.

Since it is unfortunately not curable, I have no choice but to watch with each new cold exactly how it goes, whether symptoms of EBV are there and how long the recovery lasts.

In addition, I have decided for myself to drink at least 3l a day to always rinse the liver well (stick to it since the first outbreak). Although I rarely drink alcohol all my life, and drink only in small amounts, but since 2015, I completely abstain. Also, I make sure to be warm enough in the cold.

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