Rare diseases are often hard to diagnose and treat due to a general lack of firsthand knowledge among medical professionals. Since there is a lower chance of seeing these types of diseases, many medical professionals are not entirely familiar with the way the signs and symptoms present or the most effective methods of treatment.
One such rare disease that can be hard to pin down is Chronic Active Epstein-Barr Virus (CAEBV). Typically, as many as 95% of people will catch the Epstein-Barr virus in their lifetime, but not many will typically find themselves battling Chronic Epstein-Barr. The latter form is considered a rare disease, even though the virus itself is highly common.

How do you know if you have chronic Epstein-Barr?
Many people may have Epstein-Barr (EBV) and not know it because the symptoms can often appear mild and flu-like. Common symptoms include:
- Fatigue
- Fever
- Loss of appetite
- Rash
- Sore throat
- Swollen neck glands
- Weakness and sore muscles
These symptoms tend to show up within six weeks of contracting the virus and dissipate after around two to four weeks. The fatigue caused by the virus may stick around the longest, and could be felt for a couple of months.
When it comes to chronic Epstein-Barr, the symptoms are a little different. The infection starts out as a typical Epstein-Barr viral infection, but progresses differently if the person’s immune system isn’t able to take control. The virus will then begin to linger throughout the body as opposed to lying dormant, which typically occurs in people who contract the virus.
The most common symptoms of people with CAEBV include:
- Weakened immune system and autoimmune disorders
- Lymphomas
- Hemophagocytic disorder
- Organ failure
The complications that can arise following a severe infection with CAEBV vary in severity from patient to patient, and it is thought that genetics play a big role in how cells mutate after being infected with the Epstein-Barr virus.
EBV latency stages
Latency among EBV virus cells will vary, thus changing the expression of the genes and how the infection takes hold of the body. The first latency phase, latency III, occurs when the virus enters the cells, causing initial infection. The following stage, latency II, continues when the virus manages to restrict gene expression. It then enters the final phase of latency, latency I, where it limits proteins and RNAs, which causes the infected B cell to transform into a memory B cell. This stage is when the division and replication of the infected B cells occur.
When it comes to treatment and recovery, the latency stages play a crucial role. Recovery time is lessened when treatment is sought early on in latency, whereas if the cells begin to replicate and divide, could be harder to obtain.
Is Epstein-Barr serious?
The initial infection of EBV, also known as “mono” or “the kissing disease”, is not always serious; sometimes a person can even be infected without showing any symptoms at all. Some research has shown that chronic Epstein-Barr is different in the way that it attacks the body, and can thus lead to serious complications like the ones mentioned above.
It can also lead to other health issues, such as:
- Ruptured spleen
- Anemia
- Low platelet count
- Hepatitis
- Myocarditis
- Encephalitis
- Meningitis
- Guillain-Barre syndrome
The virus can also lead to a heightened risk of developing rare forms of cancer because of the cell mutations that it can cause. Some such cancers include:
- Nasopharyngeal
- Burkitt’s lymphoma
- Hodgkin’s lymphoma
- Gastric adenocarcinoma
It can also increase the risk of developing other health conditions such as autoimmune disorders and schizophrenia.

Can you be cured of Epstein-Barr?
Since Epstein-Barr is a viral infection, the treatment options are limited. Antibiotics cannot fight off viruses because they lack antiviral properties and are generally only effective against bacterial infections. Typically, the early stage version of Epstein-Barr is cleared up the same way a flu would be: with lots of rest, fluids, and pain relievers to help manage symptoms while the immune system works to fight off the infection.
When the virus isn’t cleared out of the body and lies dormant, it can then lead to the chronic stage, which is a lot harder to treat. There is only one treatment that has been known to be effective against Chronic Epstein-Barr, and that is a hematopoietic stem cell transplant. This is done by transplanting healthy bone marrow cells into the patient.
Chronic Epstein-Barr is difficult to treat, and thus can be hard to manage. The best way to avoid a chronic case of EBV is by avoiding the virus altogether. You can do this by limiting or avoiding sharing anything such as glasses or toothbrushes with anyone you may suspect of having contracted it, and by also keeping the immune system strong as the first line of defense against all viral infections.
Featured image by Kinga Cichewicz on Unsplash