Under what circumstances did you discover the Epstein-Barr virus (doctor, internet…)?
In hospital for my 4 year old son.
How did you react?
For him it was despite 10 days in hospital and 4 months of severe fatigue. On the other hand, when I caught the virus in my turn, it was a real hell.
What are your symptoms? How are you supported (doctor, family, association…)?
I had dozens of symptoms: very intense fatigue, permanent brain fog, very painful cervical ganglions, liver, abdominal, joint and muscle pain, diarrhoea, very intense headaches, insomnia or unrefreshing sleep, myoclonus, itching, guttate psoriasis, haematomas on limbs, migrating hypoesthesia, chest pain with difficulty in breathing, breast pain, severe hair loss, night sweats and anxiety.
How does the Epstein Barr virus affect your daily life?
3.5 years later, I am able to lead an almost normal life again. However, if I engage in too much physical, emotional or intellectual activity, certain symptoms relapse (particularly joint and muscle pain, which is disabling when walking, night sweats, breast pain, diarrhoea, etc.).
Why do you think it is important to raise awareness about the virus?
Because the only answer from the doctors in this case was: “It’s psychological, you have to take antidepressants (AD)”. But it is unacceptable to leave a patient suffering horribly for months without offering any solution. The AD’s only had an impact on my anxiety, the rest was completely unaffected by this medication.
Would you like to share anything else about your experience?
I would like this disease to be better taken into account and recognised by doctors, even if it means that they are supported by natural medicines, which are very effective in helping EBV patients.
It is not normal, for example, that when I have to take time off work, my doctor gives the reason as “anxiety” or “depression” (this is the only long term illness I have been granted, long term EBV does not exist…)