#DetectEBV #VirusEpsteinBarr

PATIENT TESTIMONIALS

" Everything in my daily life is very complicated "

Under what circumstances did you discover the Epstein-Barr virus (doctor, internet…)?

At the neurologist’s.

How did you react?

I didn’t realise how serious this virus was.

What are your symptoms? How are you supported (doctor, family, association…)?

I had meningitis, Epstein-Barr meningoradiculitis in 2018, following a primary infection. with painful paralysis from waist to toes and total incontinence. I was hospitalised for 1 month and treated with Aciclovir for 21 days, cortisone, Pregabalin and Lyrica. The medical wandering lasted 4 years. I was taken in charge in a pain centre in March 2021 and the investigation started in December 2021 with EBV PCR, a fibroscopy and ENT check-up. Nobody takes my case seriously. I suffer from chronic pain and my after-effects are painful paralysis when sitting which nothing relieves except deep mesotherapy with anaesthetic. I can no longer sit or stand. I have lost 7 kg in 1 year. I now weigh 40 kg for 1m59. I am close to a bedsore. I have a constant headache, a kind of persistent and recurrent leukoplakia on my tongue, due to the amoxicillin and cortisone. And I’m on antibiotics to treat sphenoidal sinusitis. I have lost my sleep and my zest for life. I’ve been in a depression for a year. The PCR in December shows this data: – EBV PCR positive at 3.01 log which is 1023 IU/ml. The conclusion is that the infection is persistent. I have moderate hypogammaglobulinemia 7.3. I was only offered another PCR in January 2023 and serology in June 2022. I live far from any major hospital and am exhausted, but if anyone is interested in my case, I have my medical records available. I regularly have a reversed blood count. My lymphocyte count is through the roof and so are my monocytes. I am regularly anaemic in folate. I feel my body giving out on me. I’m afraid of developing lymphoma.

How does the Epstein Barr virus affect your daily life?

I am constantly exhausted, I am in pain, I am not recognised, and I simply have a Long Term Affection (ALD) until 2028. All my daily activities are very complicated. I no longer have the strength to go out for an evening, except at the homes of close friends who allow me to lie down. I have a sore throat all the time. I’m watching myself decline and apart from losing a bone, I don’t know when they’re going to act. I don’t feel taken seriously.

Why do you think it is important to raise awareness about the virus?

As with other childhood diseases, a vaccine should be found to prevent reactivation. It is better to catch this disease young. I caught it at 52. My life as a woman is ruined and my life is a constant struggle.

Would you like to share anything else about your experience?

This disease is unknown to most of the doctors I see in my hospital. I am looking for a doctor who is experienced in this infection. I could denounce the ego of some doctors, their mistreatment of me. The things they say that make you a psychiatric patient. Everyone here has their back to me. I can understand that they don’t know, but to let me down and let me die out, I will never tolerate that. I blame them. I can’t see my future, I’m dying slowly.

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