Has anyone had viral encephalitis turn into autoimmune encephalitis??

[Catmom8727]

My father is still in the new hospital we took him in for a second opinion his MRI showed small sign of HSV1 encephalitis as he first has in sept 25,2022. They are currently giving him ancyclovair for precaution just as the other hospital did but it doesn’t seem to work his symptoms include all that come with NDMA receptor encephalitis he is agitated, hallucinating, and paranoia. We are going to bring it up to the doctor today and hopefully they listen to us because I know doctors don’t like when we mention we did our own research we just have been so so desperate and at this for 6 months our hearts are hurting seeing my dad like that.

[kitnkaboodle]

In a subset of cases, HSV-1 E can precede NMDAR AE by weeks or months. In other words, the immune system responds to an initial infection, then becomes overactive. Has he gotten another LP with viral and autoimmune panels yet?

Yeah, some proud doctors might not like it when patients/families do research. But the truth is that most doctors probably don’t even know about post-infectious forms of AE. It’s incredibly rare.

I hope and pray you will get some answers soon.

♥️

Kit

[Catmom8727 in reply to kitnkaboodle]

Thank you for your reply, for now they were going to run some labs not sure if they are for auto immune encephalitis. They did an MRI on him and the last hospital he was at did a spinal tap but I don’t trust their results they discharged him for not progressing. We are currently here at the hospital waiting to speak to a doctor to let them know our concern about the autoimmune encephalitis. Thank you so much. This has been so hard on us and it hurts to see him so agitated. We will continue to fight for him

[kitnkaboodle in reply to Catmom8727]

There are blood/serum antibody panels for AE. Not as sensitive and specific as the CSF antibody panels, but it’s a start. If they are delaying the LP, you can ask for those blood tests.

[Catmom8727 in reply to kitnkaboodle]

you are amazing! We just spoke to the nurse they will be relaying the message to his neurologist and she told us they are testing him for everything possible. Thank you again for the info it’s sure helps 🙏🏻

[Tb2506 in reply to kitnkaboodle]

hi so what you’re saying is you can have HSE then NMDAR (not sure what that acronym is). My Mam was taken into hospital in January and had paranoia, a seizure, delirium. Encephalitis has been mentioned a few times over the years and it feels it’s treated then they do a lumbar puncture then there is so sign as it’s after a week of treatment. But it has seemed to flair up then go but this time it very sadly killed her 💔

[Paula-38]

Hi Catmom8727,

I was diagnosed with Viral Encephalitis the day after my first birthday party, and my Dad said that a friend of the family had a big cold sore, everyone was kissing and hugging me so the Encephalitis Society believe it was Herpes Simplex encephalitis. However I only ever had E once, and diagnosed with status epilepticus at the same time although I no longer have seizures I suffer from profound complex obsessive Compulsive Disorder- OCD, but no it didn't turn into autoimmune encephalitis but I had been left with long term after effects but not life-life-changing so to speak. There were no MRI'MRI's I'out in those days but apparently I had a CT scan and EEG so my dad said.

I totally agree with kitknaboodle , she is a lovey lady!

[Catmom8727 in reply to Paula-38]

oh my gosh at 1 year of age that must have been so scary. As a child to go through it so little and how scary it must have been for your parents as well. I work at a pediatricians office and we had a patient come in who didn’t know who her parents were turns out it was encephalitis. But thankfully you are doing great and a survivor. Hearing the stories have helped so much. Thank you for sharing

[Paula-38 in reply to Catmom8727]

I have put up a lot of posts over the last 3 years since I became a volunteer for the Encephalitis Society, and last year I wrote my story for them on their website under Your Stories, then go to my name.

To answer your question,it had a terrible effect on my Mum's mental health at the time also while I was growing up and into my early adulthood - she was the main and most important person in my recovery

(4 years ago January gone she passed away) and I still miss her plus it'it's Mother's Day soon so it doesn't seem right celebrating it without her, but my Dad spends the day with me and it doesn'doesn't feel the same but at least I don'don't spend it on my own.

My dad goes to the cemetery to see her and he rings me when he gets there so I can talk to my Mum from home as a result of my profound OCD. that why I'I'm housebound.

[Catmom8727 in reply to Paula-38]

I’m so so sorry for the loss of your mom. I feel like the support of your family is so important in encephalitis recovery and no matter how difficult and frustrating the recovery always stick together. Your fathers sounds like a sweet man. I am so happy to hear you made your recovery and most importantly surrounded by love. Today I visited my father in the hospital he was having a better day they discontinued the viral medication also adjusted his medication and ran labs to test for autoimmune encephalitis. It’s so wonderful to see him getting great treatment here the nurses and doctors are so sweet and caring. I he will be ok soon

[Paula-38 in reply to Catmom8727]

Thank you for your understanding Catmom8727! My Dad assists me a lot with my compulsions no way could all of them on my own - it used to involve both parents but now my Dad has took on what they both used to do on his own. Me a survivor? I never really gave it a thought. I think if it wasn't for my OCD, I would be able to live a normal life and be more independent.

However, I'm glad that your dad was having a better day and that he no longer requires the antiviral medication and they adjusted his medication dosage as well as giving him all the tests available that's wonderful news that he's getting the care and support he needs! Wishing him the very best of luck and hope he feels better soon! Thinking of him. 🙏 🤞 ❤️

Paula-38

[NebraskaTexas]

Catmom8727

I'm sorry you are going thru this with your dad. My husband has NMDA Receptor Encephalitis. It took the hospital 2 1/2 weeks to diagnose him. He had two Spinal Taps and they were coming out negative for everything however they could see on the MRI he was getting worse.

He would respond to the usual medication, then go down hill again. It finally took a brain biopsy to diagnose him. My point to you is if you think something is wrong don't give up. Keep pressing forward and speaking out.

Fortunately we lived in a large city with a great medical center. One of the doctors that work on my husband had interned with the doctor in Pennsylvania that discovered MNDA Encephalitis. I will be praying for you and your family.

NebraskaTexas

[Catmom8727 in reply to NebraskaTexas]

wow that is amazing that he was getting treatment with amazing doctors. Something I learned it to not stop fighting for our loved ones. How was your husbands recovery? Thank you prayers are much needed and today we are seeing progress. He even mentioned how ready he is for my wedding. Makes my heart so happy.

[The_Bass]

Wishing you and your family all the best Catmom8727 . I did have encephalitis twice at hospital – both within a month or so of each other – “HSV encephalitis June 2021, complicated by NMDA-R antibody mediated autoimmune encephalitis August 2021” is what my report when I left hospital said. You’re welcome to read my posts on here if that helps at all but, in a nutshell, a comeback is possible – a massive comeback is possible – and hold on to those positives like your Dad saying how he’s looking forward to your wedding. Thinking of you! 👍

[Catmom8727 in reply to The_Bass]

Hi there oh wow!!! Thank you for your reply. It’s been rough so they think he doesn’t have NMDA they said it’s the depokote that is making him hallucinate and agitated. So they brought it down and it seems each day he is less and less agitated so I guess it’s that. He is still in the Hospital they are trying to regulated the seizure meds. After this hospital stay he will be going to a rehab for therapy in brain trauma. This time we are doing things right since his precious hospital was sending him to rehab facility’s that did not know or have the patience with encephalitis. Thank you so much we need him back 🙏🏻