I already wrote that my brother was diagnosed with HSV1 in January of this year. In the last week there is a sudden deterioration. Again he does not know his family, disorganized behavior. He refuses food, medicine, going to the toilet... He is mildly aggressive... It's like we're at the beginning again, it's exhausting...
Is it just another phase?
I also suspect that the autoimmune encephalitis is secondary to HSV 1.
This must be so worrying for your family.
This article I’ve forwarded below might have useful info . Read the section, “Relapses and encephalitis post-HSE”. It states that that in some rare cases, there may be an early recurrence of the encephalitis after stopping treatment, even after the virus is cleared.
Complications can occur - in my case, after 6 months my body suddenly rejected the epilepsy meds it had previously accepted, and I had a nightmare allergic reaction. My GP was too inexperienced to recognise this, but my husband managed to contact the specialist who’d treated me and got me in for an emergency review and got my meds changed .
If you feel your brother is deteriorating, try ringing your brother’s consultant and ask for a review . It might also help speaking to one of the Encephalitis International charity’s advisors tomorrow, as they can advise you who it is best to contact for immediate help for your brother, too. ❤️🩹
Hello again. I’m sorry to hear about your brother’s regression. I did a lot of backward sliding as well. Has he been tested for neuronal autoantibodies in serum and CSF? Particularly antibodies against NMDA receptors?
Yeah, I get that. My family aged many years through my illness. My mom even developed breast cancer (when her only big risk factor for that was the chronic stress).
Is there a chance you could take your brother to a bigger city? A university hospital?
If you’re in the UK, you have a right for your brother to be reviewed in a different city . The Walton Centre in Liverpool has encephalitis specialists you could see.
Unfortunately I'm not.
We are from Serbia, it seems that very little is known about E here, or I haven't come across a real expert yet.
He was treated in another city for about 30 days, acyclovir therapy, after that it all boils down to home treatment.
Hi, I am so sorry to hear of your brother's experience of encephalitis. We a support line if you haven't already been in touch +44(0)1653 699599 support@encephalitis.info
Hi Majaa – I did have HSV1 encephalitis followed autoimmune encephalitis about 6 weeks later. On the plus side, and there was only one, at least I was still at hospital. I’ve read since that it’s rare but then, encephalitis itself is pretty rare so a possibility. My aggressive spell was also during that second wave – my understanding is that autoimmune encephalitis can often present itself that way.
All I can say to be positive is that I did get better following that second round of encephalitis – I had a five day plasma exchange and life slowly recovered from there. Not sure if the plasma exchange was at the root of that or “just time”.
Wishing you all the very best and hopefully your brother will also turn this corner.
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