Hi all , im joining due to a close relative being admitted into hospital with confusion and then going into a nose dive into ICU.
Doctors have thrown everything to cover a viral and autoimmune and effectively run out of treatment. currently we have not real response at the moment and there are two areas of swelling in the brain that have not shifted with any treatments steroids and then Plasma exchange.
A biopsy has been deemed unsafe and therefore we are looking at "wait and see". i guess the origin isnt so relevent anymore unless it provides a treatment pathway that isnt the "norm" in the complicated case.
I have come onto here to see if there are others in similar situations because i cant believe this is a rare case !
Sorry to hear of your situation, it's hard to tell/suggest anything from a distance. I developed Auto Immune Enc. and the cause has been attributed to a low thyroid condition as they couldn't find any infectious cause. One article I've just been reading features Tick-borne enc. it's here: theepochtimes.com/tick-born...
But it's a tricky thing to diagnose, Guillain-Barre Syndrome is another possible:
"Guillain-Barré syndrome (GBS) is a rare disorder where the body's immune system damages nerve. The damage to the nerves causes muscle weakness and sometimes paralysis. While its cause is not fully understood, the syndrome often follows infection with a virus or bacteria."
It seems one is lucky to find a cause never mind effective treatment.
Immune suppressants are part of my meds but they can enable infections to progress to sepsis. So I have keep a close eye on chest and UTI infections and keep track of my temperature with an in ear thermometer. I've been on IV anti-biotics several times too. One becomes a bit of a medic after a while.
I've had a few seizures, emergency hospital admissions, intensive care, induced coma and am on anti-seizure meds plus thyroid meds, plus others. If you are in the UK you should get free meds plus support through a social worker GP referral. Your social worker should be able to refer you to other support, psycho, physio, anxiety and other therapies plus disability finance, blue badge, bus pass etc.
Nerve and brain regeneration can occur and this can take years. I had to relearn to walk and shave etc. but after a few years I can now walk for 8 miles or so cross-country but am too anxious to ride a bus or go into town unchaperoned. Meeting loose dogs and kids on scooters etc. can also cause problems. (PTSD and anxiety).
"It's life Jim, but not as we know it" - Star Trek
I hope this has been a help - more on previous forum posts and the Enc. Soc. website. Best Wishes
thank you , we did ask about GB syndrome, and i believe the tick borne treatment was part of what was given anyway.
I have seen lots of stories on the website that talk about these particular treatments not working but not necessary hear about what happens after which may not be anything at all other than let nature deal with the recovery!
I'm very sorry to hear about your relative. What I have learned are two things... Encephalitis is the swelling of the brain (which the MRI should be able to show this) and then the cause of the swelling. The cause of the swelling can be very hard to diagnose. My husband spent 2 and half weeks in the hospital until they were able to diagnose him. In the meantime, they were treating him for all types of encephalitis, viral, bacteria and autoimmune. He would get better and then go down hill the next day. After two spinal taps ( which came up negative) they had to do a brain biopsy to diagnose him with NMDA receptor encephalitis which is an autoimmune encephalatis. Since then he has had every type of treatment. Steriods, IVIG, Plasma exchange, Ritixin, Cytoxin. He is now in stable and currently on Cellcept and prednisone for a maintenance program. They have never been able to diagnose why this happened to him however we were very blessed they had a treatment plan. We were also very blessed that we lived in a large city where the doctors had previous experience with the autoimmune encephalitis. It is very rare and they said they may see one case per month.
I hope this helps and you and your family are in my prayers.
Thank you for that comment, this makes us hopeful. However at the moment if the swelling has stopped with no more treatment options (steroids and plasma) and they are now just monitoring , I would like to know of others had seen swelling shrink on its own
I'm so so sorry to hear about your poor relative, 💔
I don't really know what to say.
I had Herpes Simplex Encephalitis the day after my first birthday so I can't say what went on when I was in hospital with 'E'. I agree with everything that Gandalf2 has said.
However, my story is a little bit like Gandalf2 regards to some of the after effects i.e I used to have seizures until 29 years ago although I remain on medication for it - sounds really we doesn't it? When I was little I had emergency hospital admissions every time I caught a bug/virus/infection.
My dad said I was treated with antibiotics and I'd had a lumbar puncture. Since the age of 3 I suffered long term mental health issues and now profound Obsessive Compulsive Disorder - OCD which I have had all the treatment there is available on the NHS but I had too many relapses so that's the end of the road. I'm left with disabling OCD although I take an antidepressant to go alongside specialised CBT which I'm no longer allowed. I have always been a very anxious and paranoid person. I have a free travel pass but because I'm housebound with profound OCD my pass needs renewing. I'm far too anxious to even go near the front door. As Gandalf2 says one can become a medic after a while - I sometimes think that describes me when talking with some doctors. I seem to have more knowledge than them sometimes.
I sincerely hope that your relative gets all the help/treatment they are entitled to.
My husbands doctors also cannot find an antibody that has caused his encephalitis. He has tried steroids, IVIG, plasma exchange and rituximab and none of these treatments have worked. They have now said that he is not strong enough to try any further treatments at the moment. They have said that his brain is now shrinking and have done another lumbar puncture to rule out alzheimer's (hes 52!) but they seem to be running out of ideas of what the cause could be and how to treat from here
thank you for your reply, it sounds positive that it is shrinking, this is what we are hoping is the case, in regards to my relatives case, the doctors have said it is up to him to see if and what recovery looks like now. good luck , i hope your husband is in recovery now and getting stronger each day.
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