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.
