Finding the right support

Avoiding diagnostic delays

The importance of the Patient-Care Provider relationship

All the stories we receive prove it: the diagnostic delay that is so frequent with EBV cases often comes to an end when we meet the “right” person… .the one who takes the time to listen and, above all, who knows the importance of mentioning EBV in order to carry out the required tests and implement a suitable treatment strategy.

The good news is that an increasing number of doctors are taking EBV into consideration!

If your doctor is not aware of the disease, they may not yet be fully informed. Do not hesitate to tell them about DetectEBV and this website for resources and … if necessary, get other opinions!

Finding the right support can take time, but trained and informed professionals on EBV do exist!

Find an EBV professional

Beware of self-medication

We often see in forums or patient groups information on certain drugs, prescriptions or recipes.

Sharing experiences is very important but it is important to keep in mind that EBV involves complex immune mechanisms and it is therefore essential to find the right medical support before starting any treatment.

Unfortunately, it is also common to be offered so-called miracle methods… Be very careful and don’t take the risk of worsening the problem.

DETECTING THE VIRUS

After seeing many doctors who couldn’t figure out what was wrong with me, Dr. Pascal M. discovered the culprit – the EBV virus that was disrupting my immune system! I really like how he explains it, everyone can understand.

What a patient says

Treatment options

Let’s take a look at the treatment options that exist or are being studied. We will only discuss prescription drugs here. Approaches involving nutrition, micronutrition, phytotherapy, etc. are obviously essential, but they too must be supervised by a professional: to avoid promoting self-medication, we encourage everyone to discuss the subject with a qualified health professional and to find the best treatment for them.

Find an EBV professional

Existing drugs

Antivirals drugs (Aciclovir type)

Here we are referring to antivirals such as Aciclovir® and other drugs with a similar action type (Valaciclovir®, Ganciclovir®, valganciclovir®…). It is a powerful antiviral drug, active on viruses from the herpes group. It prevents the reproduction of viruses in infected cells, but cannot destroy the viruses hidden in the nerve ganglions, which are responsible for reactivations that it cannot prevent. It is used in :

shingles treatment,
treatment and prevention of herpes outbreaks and recurrent herpes virus eye infections, prevention of cytomegalovirus (CMV) infections, after organ transplants…

It is not specific to EBV but is aimed at the herpes virus family in general.

Micro-immunotherapy treatments (2LEBV / 2LXFS)

2LEBV® is a low dosage immunotherapy drug that targets immune regulation in acute or chronic infections caused by the Epstein-Barr virus.  Micro-immunotherapy is an immunomodulatory therapy using immunocompetent substances called cytokines, similar to those produced by the immune system and nucleic acids. 2LEBV and 2LXFS aim to inhibit viral replication and support/regulate the immune response.

Ongoing clinical trial: In December 2020, a randomised, placebo-controlled, double-blind study was launched to assess the efficiency of 2LEBV and 2LXFS on asthenia (fatigue, chronic fatigue syndrome – myalgic encephalomyelitis) in patients with Epstein-Barr virus infection.

See the study: https://www.clinicaltrials.gov/ct2/show/NCT04308278?term=EBVAST&draw=2&rank=1

Future techniques

Immunotherapy for multiple sclerosis patients

Atara Biotherapeutics wants to develop a new treatment, called ATA188, which involves injecting T cells specifically targeting EBV-infected B cells and plasma cells into MS patients.

A phase I trial was conducted in 2022 in a small group, with no placebo or control group yet. EBV is also suspected of causing other autoimmune diseases, such as lupus and type 1 diabetes, and Atara Biotherapeutics plans to assess the efficiency of its treatment on these other diseases.

Vaccination

To this day, there is no efficient vaccine that can neutralise the Epstein-Barr virus. Because of its complexity, it seems that this virus is giving scientists a hard time to find a vaccine. Indeed, the fact that the virus infects both lymphocytes and epithelial cells (dual tropism) and that it produces different proteins in different phases (latent/lytic) makes vaccine development difficult.

However, in January 2022, the American laboratory Moderna announced the launch of clinical trials using messenger RNA (mRNA) technology: a prophylactic mRNA vaccine-1189 and a therapeutic mRNA-1195.

See the study: https://clinicaltrials.gov/ct2/show/NCT05164094