Mallory: Viral Encephalitis Lived Experience

Mallory Mastrogiovanni gives a presentation via video link from the US on her and her family's experiences of encephalitis for our My Brain: My Story event at the Liverpool Medical Institute, 19th October 2019. Mallory's brother in law Mike was affected by viral encephalitis in October 2018, and Mallory talks us through his diagnosis, treatment, rehabilitation, and the impact on the family.
My Brain: My Story was funded by the National Lottery Community Fund www.tnlcommunityfund.org.uk/ as part of our Life After Encephalitis project.
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[@thirdmares3441]

my son 9 years old diagnose encephalitis and now we are struggling where to get money to pay the bills and medication... but i know God will make a way.. i need your prayers for my son fast recovery.. TIA

[@TheMancini93]

I got it in 2016. I still need a walker, have large parts of memory gone. I was in the hospital about 6 months waking only a few times a day for a few min. Then they did a plasma exchange. As it was explained to me, I just woke up. It still took time for my body to relearn how to eat and digest food. And find the words I wanted to say. All these yrs later, I still need a walker. Bad balance. I am not aloud to drive. And if Im alone, I cant cook or shower. They say my brain now is probably as good as it will get. I do think and remember things much better in the evening and at night. I do have great family support. My husband, my parents, my adult children, and even my brothers. All except my son live within 2 miles with most of us on the same block. My son is accross the country. Thank god for family.

[@encephalitisinternational]

Thank you for sharing your experiences with us Rebecca, we are so sorry to hear of your encephalitis in 2016. You are not alone - we are here for you and your family. Please don't hesitate to reach out to [e-mail] if ever you have a question or are in need of some support.

[@HKPSG1Shooter]

I was 38 years old when I had viral encephalitis. It began with extreme confusion and agitation, ending with me falling out on my back porch with a seizure. I spent about 5 days in ICU on a ventilator, and then another 2 weeks in critical care, where I slowly started returning to normal. Doctors were mis-diagnosing it as a psychiatric condition.....but finally a neuropsychologist evaluated me, told me that the cold sore virus had attacked my brain and caused my 3 weeks of misery. I was sent home the next day. It took me about 2 or 3 years to really make a full recovery, but I'd say it was about a 95% recovery.

[@encephalitisinternational]

Thank you for your comment, and for sharing your story with us. If you ever have any questions about what happened to you, or would just like someone to listen please do get in touch with us - you can email us at [e-mail], or call on [phone]

[@briangomez7197]

How long did you last with it untreated?

[@explore_with_sagan9596]

What helped in recovery??

[@muhammadumer8963]

What helped in recovery dear?

[@lfctubes]

Hi, my wife was diagnosed with encephalitis about a month ago. It was started with a seizure and later she was put to sleep about 11-12 days to control the seizure from damaging the brain further. She also diagnose with a breast cancer 4 years ago and still ongoing with her chemo treatment on monthly basis. With this cancer has caused her immune system is very low and hard for her to fight the virus in her brain. Thank god she doing well now but only that there is some effect on her brain and sometime the communication is more on her imagination. I can understand that after a month with virus on her brain there is a lot of gap that she need to catch up. I just hope that soon she will recover fully. I would like to ask how long will the brain or her memory will come back normally like before. I pray everyday hoping she recover and can do what she used to do before. With family, friends around her hope the recovering process is more faster. As a husband I must be very patience and supportive. Thumbs up to all family members around the world who has taking care their encephalitis patient..you all the best..

[@kirkb2286]

My wife was diagnosed viral encephalitis in 2009 and fully recovered she died in 2023 . It was a long hard journey…..very hard…..I only mention this because as the lady in the video mentioned a new normal……I wish the best to all of you

[@Pete99994]

I was almost a month in the hospital in ICU on a vent in 2018, it took me months to somewhat understand what encephalitis was. I live day to day with issues that I dont talk about because who will understand me. I hope these videos can help others with post encephalitis to understand what to expect after survival.

[@encephalitisinternational]

Thank you for watching, and for your comment Sam. We are so sorry to hear of your encephalitis in 2018 and some of the daily issues you have been living with since. You are not alone - we are here for you. You can reach out to our support team any time you have a question by emailing [e-mail], or by calling us on [phone].

[@johnboltman2285]

Thank you for an incredible story. I was diagnosed with ADEM (Acute Disseminated EncephoMyalitus) in 2003. I had almost the same symptoms as Mike, not knowing the source - we think it was either a tick bite or mosquito bite while on holiday Christmas 2002. I was comatose for 10 days and on life support. You story brings tears to my eyes, - I have been there. The hardest part of it was the withdrawal of my civil aviation medical, that broke my heart. However as you say, I am alive. (My father, sister and brother in law were all medical doctors, they though it was time up). Thank you so much for making others aware of this terrible infection. When my friend took me to a doctor initially (after my behavior had changed) the doctor suggested post traumatic stress, related to I still don't know how or why he reached that decision. It's been 20 years plus now, I am unable to fly planes, however I hold a job down, - I have an adventure motorbike, I'm totally in love with it.

[@penelopelambson6794]

I went through 8 + months recently with viral encephalitis with no medical care. Immobilized with horrible brain inflammation I was afraid to breath, turn over, sneeze, or even sigh, for fear my brain would rupture. The pressure in my brain was intense. It was terrifying. I have been much better for 5 months as the pain is mostly gone, but have noticeable cognitive impairment. Word finding is sometimes laughably poor. The mental exhaustion is very dominant, recall is not good. Also experiencing apathy, depression. The months in bed has left me physically deconditioned and weak. The road ahead to rebuilding myself looks long. The strange part is that no one realized what I was going through. I was fortunate to have a milder case than many but it was nonetheless an excruciating and prolonged ordeal. I sympathize with all who have this disease.

[@briangomez7197]

I'm currently going thru this been 4 times to the ER room this year I've been fighting this for A year now I'm lost and don't know what to do next 😔I really hope I can find help I have A little baby boy I need to be A dad for Please pray for me I'll really appreciate it

[@rhondaedmonds4296]

My son is 30 years old. He has had encephalitis of the brain for 20 years now, seizure on a daily basis. 20 different meds, separated hemispheres, 7 clinical trials. We send ❤️. We understand your struggles.

[@encephalitisinternational]

You are not alone, rhondaedmonds4296, we are here for you and your son. Please don't hesitate to reach out to our support team for advice, information, signposting or a listening ear. You can reach us at [e-mail] or [phone]

[@joysdogtraining]

Did you're son have major issues with balance? Also dillusional, unable to speak properly? My brother was just flown to hospital suspected of this

[@brigettehinton6713]

I 100% agree there is an extreme lack of understanding and knowledge of encephalitis here in the US. I also was being treated for a UTI when I got sicker with also a temperature of just over 106! I did not loose consciousness but was confused and lost to your surroundings. I live now four years later with memory loss, extreme fatigue and confusion with tasks or communication. I am so happy your brother in law survived and was transferred to a better equipped hospital. The US needs more knowledge about this horrible/more common then we know illness. Bless you and your family 💜

[@encephalitisinternational]

Thank you for your thoughtful comment Bridgette, and for sharing some of your story with us. If you would ever like some support with the memory loss, fatigue and communication difficulties you are still living with please don't hesitate to get in touch with us - you can email us at [e-mail], or call our support line on [phone]. You are not alone - we are here for you

[@brigettehinton6713]

The Encephalitis Society thank you for the support and kind word. I have contacted them and got one email saying my case was going to be looked over by doctors but I haven’t heard anything else. 💜

[@encephalitisinternational]

Hi Brigette, thank you for letting us know you've been in touch. You should have a reply to every contact you've sent to [e-mail]. Regrettably, on rare occasions email servers or other technology may fail. Should you suspect that there have been difficulties with your email request, please re-send your email or get in touch with us via our telephone number ([phone]). We are here for you.

[@diptinadgouda8353]

How r u now? Can you plz more elaborate your symptoms?

[@aishpics152]

@@encephalitisinternational My mum does not recognise us still. I wonder if there is any possibility she will ever be able to remember us and live a normal life. She was diagnosed with Encephilitis in August 2016. Can someone help me how to take her treatment forward that may help to calm her and help her brain.

[@djinu13]

I’m glad I found this video. My wife is currently on month 3 of hospitalization. It is very frustrating.

[@encephalitisinternational]

Thank you for your comment DJ I.N.U., and I am so sorry to hear of your wife's encephalitis. We are here for you - if you have any questions please don't hesitate to get in touch with our support team at [e-mail] or [phone]

[@muhfux]

I feel for you bro. I've had to deal with this three times in my life. Having others around definitely is helpful

[@lawrencehobson6848]

I had HSE. It was the most difficult thing I ever dealt with... and I still go thru constant effects from the consequences of the infection and it's been over a year. I'm lucky to be alive. I was also 38 years old when it happened, last year. Glad I made it to 39 and wish everyone who deals with this infection the best.

[@encephalitisinternational]

Thank you for watching, and for sharing some of your experiences with us Lawrence. You are not alone - we are here for you. If ever you need any support, please reach out to us at [e-mail]

[@John-pt5sr]

Hello brother what was ur symptoms when u got to know abt this disease? And how you came over it? Plz share

[@escarletobando7960]

Wow thank you fir sharing this video. I can say I am almost in the same position as you. My brother in law is suffering from encephalitis. He has been 3 months in the hospital. It is so sad and scary. His case has been very severe it almost seems hopeless. I am trying to give hope and support to my sister. The hospital has told us they has done all they can and yet he is still very fragile, unable to walk or use his hand. Etc. It is encouraging to see that other people have recovered and have gone back to their lives.

[@encephalitisinternational]

Thank you for your comment, Escarlet. We are so sorry to hear of your brother in law's encephalitis. We are here for you and your family - please don't hesitate to reach out to [e-mail] for some support.

[@kikecabrera717]

Thanks for all your stories it really helps to read these stories my little brother is going through this it's really hard too see him through this but I have faith he will recover 🙏

[@loveconquersall143]

Wow, how brave. Sending you all much love, strength and healing from Australia 💞🙏🌹

[@YorkAsprilla]

This was very emotional. Thank you for sharing

[@mandycumberland4732]

Your brother in law is doing an amazing job , I know how hard is it as had Bickerstaff brainstorm encephalitis in 2014 . I was in a coma for 5 weeks and had to learn everything again too, which meant I had a 3 month stay at a neurological rehab unit till I was able to walk un added. 8 years have pasted and it been a journey that I didn’t want to take but I did and your right there should be more known about this illness as I have nerve damage, balance issues and many more and getting answers about what’s happened and how are questions that have no answers. Keep fighting it will not Define us x

[@rabbichannen857]

Thank you. The courage you showed is so supportive.

[@encephalitisinternational]

Thank you for your kind words Rabbi.

[@miraclealvarez8255]

Thank you for your story my daughter has been fighting this decease for 2months now your video gave me hope she is 25 and has a 7year old i was so afraid of her not recognizing her son or me this has been the worst nightmare ever but thank you for video i am sitting in the hospital watching your video and telling my daughter she will be ok !!!

[@encephalitisinternational]

Thank you for your kind comment Diana, and for sharing your story. We are here for you - you can call us on [phone], or email us at [e-mail]. You and your daughter are not alone.

[@amisheriff709]

My daughter is critically ill in intensive care right now with NMDA autoimmune encephalitis and i am looking for information about this condition. She has had all her treatments but still no sign of improvement yet. How is your daughter right now

[@encephalitisinternational]

Hi Mando, thank you for sharing with us about your daughter's NMDAR encephalitis. You are not alone - we are here for you. Please don't hesitate to reach out to [e-mail], or call us on [phone] for some support.

[@lachandadupard21]

This is a very encouraging life story. Thank you for sharing. I’m supporting my family member through the healing process due to encephalitis resulting from Covid virus. Trying to learn as mush as possible to support and recovery!!

[@encephalitisinternational]

Thank you for watching, and sharing some of your experiences with us LaChanda. We are so sorry to hear of your family member's encephalitis. Please don't hesitate to reach out to [e-mail] or call [phone] any time you need support or have a questions about encephalitis and it's outcomes. You are not alone - we are here for you.

[@leecorum9038]

Glad to see the videos about encephalitis cause i needed it today for sure. I had encephalitis two years ago and have had a rough time since it happened and never new about it. It has totally changed me as a person i have some not so good results from it but i am alive and happy to be with my family. I agree there needs to be more research into this i still want more answers cause i has never heard of it till i got it. Much love to everyone 💙

[@encephalitisinternational]

You are not alone, leecorum9038, we are here for you. Please don't hesitate to reach out to our support team for advice, information, signposting or a listening ear. You can reach us at [e-mail] or [phone]

[@KeenlyClever]

Just to let you know I am so thankful of you sharing what happened to your brother in law. It is further motivating me, I also am dealing with encephalitis.affecting the brain. I understand how it is considered more of a new diagnosis all over the world. I am going to write this down ASK THE DOCTOR TO GIVE A BETTER UNDERSTANDING. I need to be understood that I need practice to further improve the various things that I do IN LIFE.

[@encephalitisinternational]

Thank you for watching, and for your comment Kalitah. We are so sorry to hear of your encephalitis. You are not alone - we are here for you. Please don't heistate to reach out to us at [e-mail] if you have any questions or would like some support.

[@cindyherget5196]

Thank you so so very much for sharing your story. I’m in Oregon. My daughter survived Viral Encephalitis Christmas 2011....... She was 9-1/2.... Now she’s a sassy 17 year old navigating high school and all the stress that brings her. She has quirky quirks that make life difficult for both of us. But I’m grateful for life that she’s here and not in heaven. She’s here making life difficult for me and me not crying all the time because I miss her. As frustrating as it is to mother her so much I know it’s just as hard in her, because she’s the one with the brain that was damaged although physically she looks okay and seems to act okay most of the time, she’s still not at full brain processing age of general education kids her age. She’s like the little sister to most. Liberty is loved by so many. Although most thought she recovered, yes she did, to a point. No one saw her struggle for her “brain” to work right. It’s nearly impossible to explain and the glitches. Some day I’ll be able to eloquently write down all she went through (I went through, experienced). I lucked out and we didn’t loose her. Thank you for your “American” story.

[@encephalitisinternational]

Hi Cindy, thank you so much for your comment and for sharing your and your daughter's story with us. Encephalitis and the acquired brain injuries often associated can be so challenging when there is often such low public awareness of the illness, and the invisible disabilities it can leave people with. You are not alone - we are here for you both. Anytime either of you have a question about encephalitis or would like someone to talk to, you can email us at [e-mail], or call us on [phone]

[@vale6513]

Cindy you are not alone. It seems this virus is happening more since my daughter had it in 2001. I, like you, am blessed to still have her here. She is now 24yo. She suffers short-term-memory loss, frustration, irritability, learning disorder, can eat n never be full bc it affected her pituitary gland, and she is always tired n sleepy. Mallary is also everyone's angel. Shes suffered alot. People see a perfect looking girl on the outside. They don't see her struggle on the inside. These people go through so much. I laugh to myself about the sml bc she forgets who did her wrong or people that try to be hateful to her. She ends up making these people love her n changing their hard hearts. She loves everybody like Jesus loves. Mallary has a story somewhat different from others. She experienced a trip to heaven with Jesus while in a coma during this time of sickness. This is only memory she has and only story she can tell from memory. She didn't know any of her family but she knew Him (Jesus) She is a special young lady. Shes guided me spiritually. Another thing she has never been sick anymore with anything. Not a stomach virus, not a flu or cold, nothing! I question that sometimes. Was it all the meds or is it a blessing? I don't know. Anyway, to all caretakers of encephalitis survivors hang in there. Get them a notebook and calendar. Repetitious work helps build the memory. Singing helps the memory. Mallary keeps a journal and a notepad to remind her of things. She keeps them in one place so she routinely knows where to go to help her remember what shes planned for the day. Take care. Love from Louisiana

[@user-qd7nv7zx1u]

Plz pray for my sister she is suffering the same disease 🥺

[@PssstShhhh]

I had encephalitis when I was both 16 and 19. I didn’t have the luxury of having doctors give me physical therapy. This was in 1987 and I was sent home to ‘be with my family’. I was asleep from October 11th to the middle of March 88 and Feb 91 to April 1991. Now I’m 50 years old and I think I’ve recovered.

[@encephalitisinternational]

Thank you for sharing some of your story with us, TheHip Grandmother, and I am so sorry to hear of your encephalitis at 16 and 19. You are not alone. Should you ever have any questions, or need any support please do not hesitate to reach out to us at [e-mail], or [phone]

[@karthikd9268]

We’re you able to eat food.. my dad is having autoimmune encephalitis and not having food for last 3 months.. drinking only liquid ..please share

[@rachelcallender7432]

My brother had viral encephalitis when he was 19 and came through it, since then he had pneumonia and was once again put on a ventilator which he pulled through. Viral encephalitis was a strange situation as before diagnosis they assumed it was drugs because of his age .

[@encephalitisinternational]

Thank you for your comment, and for sharing your brother's story with us, Rachel. We are here for you both - if ever you need any support, information or advice please don't hesitate to get in touch with our support team on [phone], or [e-mail]

[@susanahmady8757]

My mother has viral encephalitis but we don’t know how to treat her plz provide me the information it has been three years she is still the same any help please

[@midialadiaz1228]

Thank u for sharing this story We have a very very close friend that he is been in the hospital for 6 month ,w don’t want to lose our faith but is hard see him going through this ,so sad he is not showing nothing and bcs the time in the hospital now he has and infection they said bcs wounds After all he is going through now this

[@encephalitisinternational]

Thank you for sharing, Midiala. If you, your friend or their family would like any support you can get in touch with us at [e-mail], or call our support line on [phone]

[@arianajayde8903]

My brother inlaw is going through this as well... he was diagnosed not long after his 19th birthday last year October... it’s truly heartbreaking my prayers for you,your brother inlaw and families 💕

[@randolfaquino9998]

Encephlitis is often mis-diagnosed and mistreated. My sister is now recovering from JE her eyes got mis aligned and zones out a lot but can talk now. For Family..shit happens...suck it up and accept it. Sole objective is just one thing make them happy. Then another is to learn to make yourselves also happy inspite of it.

[@gloriapheirim2894]

Phew! Watching this video is like watching someone reliving my footsteps. My younger sister suffered frm JE on 17 sep'18, she went into life support for 2 weeks. Everyone thought we've lost her the doctors couldn't diagnosed & treated it as psychological disorder initially. Finally after all tests they were able to diagnose it as viral & this was the first case the hospital has ever handled so it was a learning process for the nurses & doctors too. When I was told of JE, I've never ever heard of it n God knows how it's even spelt, I went online to research & fr testimonials & I was surprised that there was very few articles & barely any testimonials I could find. Anyhow it's been over two years now, my 18 year old sister had to relearn everything, it took over a year for her to take her 1st step & as of today she's learning to walk without a walking stick. It's not a 100% recovery, her hand movement are restricted but we can't be thankful enough fr her to be able to make this far. I wish there be more testimonials & social awareness on how to treat encephalitis & support for the family members

[@encephalitisinternational]

Thank you for your comment and for sharing some of your and your sister's story with us Gloria. You are not alone - we are here for you. Please don't hesitate to reach out to us for some support at [e-mail], or you can call us on [phone]. You can read more about JE here: www.encephalitis.info/japaneseencephalitis, and Chelsea who was affected by JE shares her story here: kzbin.info/www/bejne/i5aWq3uYerFpepI

[@rickysoit]

Hi.. i'm from Indonesia. what's the difference betwenn meningitis and encephalitis? my wife has gone last month, the doctor said it was meningitis. 12 days in hospital, her short memory is lost, she couldn't remembered what's have just we talked about 5 minutes earlier. terrific headache, she feels so much pain in her head. 😢 now she is in heaven, no feels pain again

[@encephalitisinternational]

Hi Ricky, thank you for watching. We are so sorry to hear of your loss. Meningitis is an inflammation of the protective lining of the brain and spinal cord called the 'meninges'. Encephalitis is an inflammation of the brain itself. Both can be caused by lots of different things. Please reach out to [e-mail] if you have more questions, we are here to help.

[@bitchlasagna5897]

Wow i got diagnosed on September 2018

[@leahpandico1323]

My mom is currently confined in the hospital here in California diagnosed with HSV Encephalitis. She has been in coma for a week now. Upon reading this inspiring story, it uplifts my spirit and confidence that my Mom can surpass this very difficult challenge.

[@encephalitisinternational]

Thank you for watching and for your kind words, Leah. You are not alone - we are here for you and your mom. For support, advice and information please reach out to our support team at [e-mail], or [phone]

[@ejonazavalina3112]

Hello ! How is your mom now Leah ? Hope everything has gone for good . I’ll be so glad to know for you and your mom ! 😊

[@mergersupporter97]

How is your Mom now?

[@Rizwanaimtiaz566]

my husband was diagnosed with this a year ago and he has gotten worse over time, unfortunately doctors weren't able to help us and he is has no idea what year or day it is. He is now in a long term care home and is going to multiple rehabs which hasn't been effective, we aren't sure what to do anymore

[@encephalitisinternational]

Our support team are here for you and your family, Rizwana. Please reach out to us at [e-mail], or call us on [phone] for some support. You are not alone - we are here for you.

[@markmaxwell4890]

Ask Allah ( God ) for healing 🙏🏻

[@steam_jane5580]

I'm 16 now, and about 2 years ago now if I have calculated correctly, it started with a sezure in my kitchen. Thankfully I have been left with no long term problems or at least not any major ones that effect my life. Edit: I couldn't be more great full to all the doctors at GOSH and UCLH, esspecaly my main doctor who got me swiftly on to the treatment.

[@steam_jane5580]

I wish everyone the best for everyone currently going through or exspirence the effects of any type of encephalitis. 😀💕

[@isabelmartinez3492]

My daughter was diagnosed with Encephalitis almost 2 months ago 😭 she unable to walk, hilusinating and very confused. She has been in the hospital ever since but soon to be discharged with no change ..

[@encephalitisinternational]

Thank you for your comment, Isabel, and I am so sorry to hear of your daughter's encephalitis. You are not alone - we are here for you, and your family. Please do not hesitate to send any questions you have to our support team on [e-mail], or call us on [phone].

[@sakilex3359]

I'm so sorry to hear about your daughter. My daughter was diagnosed with encephalitis when she was 9 years old. She spent 3 months in the hospital before they told me she was as well as they were going to pay for. We had a long road but after 2 years she began to come around slowly. She had to learn to walk, talk, read, write, etc. all over again, but she is doing much better now. She just turned 24 yesterday, and while she still has some limitations, she is an amazing young woman. I share this because I want you to have hope. Talk to her, read to her, anything to let her know that she is herself no matter what her condition is. Lex is the older one in the picture. Have hope Ms. Martinez.

[@enzone45]

I'm here because of the brain on fire movie

[@QuodlicetJovinonlicetbovi]

Hello, how is your brother now?everything going better?wish your family all the best❤

[@deenakesmodel4911]

Hi. I was wondering if you can tell me what showed up on his CT scans and MRI's when he was still unresponsive?

[@Goosebumps03]

Assalamualaikum My 16 year old sister is suffering from viral Encephalitis. She is admit in hospital since 1 week. Very slowly she is recovering from the desease. Seizures are not stopping it come's over a time period of 12 hours or 20 hours. All are requested to pray for her so that she could get recovery from this desease very soon.

[@nishasree6253]

My daughter in same.situation she is 35 days in ventilator

[@adeeva7517]

My best friend has been hospitilized for 5 days now. She's got into critical condition last night. I don't know what to do, i have no idea about this and I feel hopeless. Now i'm trying to do some research. Thank you for the video.

[@encephalitisinternational]

We are so sorry to hear about your friend Adeeva. You are not alone - we are here for you and your friend. Please don't hesitate to reach out to [e-mail] or call us on [phone] for support, information and advice.

[@saurabh4555]

@Adeeva i am also from India and currently my mother in law is suffering and admitted in hospital from last 10 days....hows your friend now? can you please tell me Any suggestions to improve my mother in law for faster recovery?

[@kristinnefertiti8267]

I got it at 15 yrs old. In hospital for 2 weeks... I only remember the last 3.... 24 years ago

[@encephalitisinternational]

You are not alone, Kristin. Please reach out to [e-mail] for support, advice, information and signposting.

[@irrigationjoehenggeler2863]

A wonderful video on encephalitis. I am just getting back from 3 weeks in the hospital. One evening at home my son saw I was acting strange; he called an ambulance. I recall little about the first 2 or 3 days, but once things were stabilized, I was transferred to Inpatient Rehab. My Discharge Diagnosis, among other things, mentions toxic metabolic encephalopathy. Type 2 diabetes led to cellulitis in both legs that led fever, etc. Now I know that I must be insistent & plow on like your brother-in-law, Mike!

[@encephalitisinternational]

Thank you for your kinds words, and for sharing some of your recent experiences with encephalitis with us, IrrigationJoe. You are not alone - we are here for you. Please don't hesitate to reach out to us at [e-mail] if ever you need any support.

[@louiegatchalian9314]

Back in '98 when i was in LA, calif, i was diagnosed of Viral Herpes encephalitis. How i have gotten it is still unclear to me up to this time. Docs who saw me told me that i might have gotten it 'tick bites' coz my daughter had a toy poodle. I came bck tò the Philippines in '99 and presently taking anti seizure meds. I average 5 to 7gran mal(tonic clonic) a year. Hard for neuros to accept this, but its true! Now, i am 67yrs old taking anti seizure meds plus blood pressure meds. A little driving. I just want to ask the type of anti seizure meds most of you are taking. Thanks..

[@ferihaemir8547]

From India. My father is in deep sleep now on ventilator,, he is suffering from Bacterial meningitis and pneumonia...I m very sad .my whole family is very worried about my father's condition...when he will alryt God knows...it's very painful to see him like this .. Dr is saying may be there's a doubt that he is suffering from encephalitis too .....Oh God please stop this and protect my Dad...we love him.. Please pray for my dad's recovery please....🙏🙏

[@encephalitisinternational]

We are so sorry to hear of your father's illness, Feriha. You are not alone - please don't hesitate to reach out to [e-mail] for some support.

[@ramakrishna-db5et]

My daughter has been in hospital from last one month, she is just one year old 😢, she is still not identifying us, she is going to discharge tomorrow, will she recover, how much time to take to fully recover, we need her like before 😭

[@encephalitisinternational]

I am so sorry to hear of your daughter's hospitalisation with encephalitis, Rama. You are not alone - we are here for you. Please reach out to [e-mail], or call us on [phone] (we can also pre-arrange skype calls if easier for you, you just need to drop us a line to the email address above) for some support. You can also find some information on being at the bedside of a loved one with encephalitis here: www.encephalitis.info/at-the-bedside, and information on encephalitis in children here: www.encephalitis.info/encephalitis-in-children-a-guide

[@viveksingh9518]

Hello...me encephalitis in 2015....still on medications. My memory sometimes make me feel low and frustrating..as earlier..me was very good on memory and now have problems with remembering things. If ur society can guidance..pls help me..to regain my strength..as I feared a lot in roaming due to forgetfulness. Not easy to remember things.

[@encephalitisinternational]

Thank you for reaching out to us Vivek, we are so sorry to hear of your encephalitis in 2015. Our support team are here for you, to answer your questions. Please get in touch at [e-mail], or [phone]. You are not alone - we are here for you.

[@avinashsikarvar4857]

Hlo mujhe bhi yhi bimari hui thi 2017 m mujhe bhi abhi dikkat h kayi saari pta ni kb thik honge pls reply vivek

[@saurabh4555]

i am also from India and currently my mother in law is suffering and admitted in hospital from last 10 days....can you please tell me Any suggestions to improve my mother in law recovery?

[@saurabh4555]

@@avinashsikarvar4857 i am also from India and currently my mother in law is suffering and admitted in hospital from last 10 days....can you please tell me Any suggestions to improve my mother in law for faster recovery?

[@Jayykatt]

How long was his whole process ?

[@encephalitisinternational]

Hi Jesus, thank you for your question. Mallory says at the start of the video that Mike fell ill in October 2018, and this video was filmed in October 2019, so she is telling the story of her family's experiences over that past year, 2018-2019.

[@Vintage.soul.0]

Me too had suffered from viral encephalitis. On 7 mar 2020 and after 8 months i had another brain infection but alhamdulillah i got recoverd so fast. I have one question that can i smoke cigarettes after that can anyone tell me

[@encephalitisinternational]

Thank you for your comment, Syed. We are so sorry to hear of your viral encephalitis last March and are glad to hear you have made a good recovery. Our support team are here any time you have a question, you can get in touch at [e-mail]. Please ask your doctor about the cigarettes.

[@Vintage.soul.0]

@@encephalitisinternational 😘

[@susanahmady8757]

Salam, glad you recovered thanks to kind alluh can you plz help me my mom has been going through this since three years we don’t know how to treat her JAK

[@explore_with_sagan9596]

No, smoking will cause oxidative stress and hence inflammation in brain.

[@shubhangigaikwad1336]

Hey im from India, my mother suffering from acute encyphilities from this 18 April 2021 and now she can open her eyes and moving her eyeball but she still not able to talk and move her body. Can you suggest me how much time she will get and is this a positive response from her side

[@encephalitisinternational]

Thank you for your comment Shubhangi, we are so sorry to hear of your mother's acute encephalitis since April this year. You are not alone - please don't hesitate to reach out to [e-mail] for some support.

[@jeevanshusethi]

How is the condition of your mother right now ? Pls answer this, can't explain right now why I'm asking 🥺

[@apupatil8391]

Hey Shubhangi, I am from India. My brother is also suffering from viral encephalitis. Can you please tell me how is your mother now ? I want to know about her recovery and treatment. Please guide me.

[@fifun8479]

@@apupatil8391 what happened to ur brother.does he contracted with corona

[@saurabh4555]

@@jeevanshusethi i am also from India and currently my mother in law is suffering and admitted in hospital from last 10 days....can you please tell me if someone was ill in your contact how's he/she? Any suggestions to improve my mother in law recovery?

[@aamni6585]

I wanted to know more because I have encephalitis

[@encephalitisinternational]

Hi Aamnah thank you for your comment. Our support team are here for you, to listen, provide information about encephalitis and advice. Please get in touch on [e-mail], or [phone]. You are not alone.

[@aamni6585]

Thank you

[@aishpics152]

@The Encephalitis Society My mum does not recognise us still. I wonder if there is any possibility she will ever be able to remember us and live a normal life. She was diagnosed with Encephilitis in August 2016. Can someone help me how to take her treatment forward that may help to calm her and help her brain.

[@encephalitisinternational]

Thank you for your comment aish, we are so sorry to hear of your mum's encephalitis and memory problems since. You are not alone, our support team are here for you. Please reach out to them at [e-mail], or [phone].

[@jtbkerns]

My sister is currently in a recovery nursing home and has been on a ventilator. She was off for a few weeks but got sick again which gave her a setback. This has been going on since March 17th. They have Decided to work on getting her off the ventilator and no physical therapy. She is looking very stiff. How can I help her? I don’t want her to not be able to walk again.

[@encephalitisinternational]

You are not alone jtbkerns, we are here for you and you sister. Please don't hesitate to reach out to our support team at [e-mail] if you need some support.

[@jtbkerns]

@@encephalitisinternational thank you I will be doing that. It’s been very emotional. And she is not improving.

[@nukkawhat420]

I was diagnosed with encephalitis about 3 weeks ago. I woke up in the hospital and it's been terrifying every since. I cry for no reason. I get horrible headaches. I get confused over little things. I get overwhelmed when there's a lot going on. I get very angry and snap at things with my wife. And I haven't even had my first neurological visit. The only things I know of this is what my wife told me and what I've seen here so far. I wish this impending sense of doom would stop. It's pure anxiety. I don't even know what I'm supposed to do...

[@encephalitisinternational]

We are so sorry to hear of your recent encephalitis diagnosis Robert. You are not alone - we are here for you. Anxiety, headaches and overwhelm can be very common during recovery from encephalitis. You can learn more about the recovery process, and tips of what can help here: www.encephalitis.info/guidelines-for-recovery. Our support team are here to answer any questions you or your family have, you can reach them at [e-mail], or on [phone]

[@amitrai5238]

Hii... I am amit , lost my wife, doctors said she has encephalitis 😭

[@encephalitisinternational]

Hi Amit, thank you for watching, we are so sorry to hear of your loss. Our support team are here for you, please call [phone] or email [e-mail] to get in touch.

[@trinakozak4557]

So just asking .... Did they do a lumber puncture to diagnose encephalitis? Or was that the only thing that could come up with. In the beginning of your story you mentioned the kidney infection is it possible that he had a urinary tract infection that went rogue ? Because for many people what your husband experienced is what can present itself from a UTI that makes its way into the blood stream ... Walking through this myself with my mom❤️

[@encephalitisinternational]

We are very sorry to hear about your mom's encephalitis diagnosis, Trina. Our support team are here for you, you can reach them at [e-mail], or call them on [phone]

[@unknownjunction7955]

My 18 yrs old brother die from this disease😭😭

[@encephalitisinternational]

We are so sorry to hear of your loss, AI_Islami. Our support team are here for you to help answer any questions you might have. You can get in touch with them at [e-mail]

[@qpDemonqp]

Hello allah yarhm your brother, how he died?

[@leviwalters1135]

Thank you very much i was diagnosed with encephalitis 6 month ago im still in hospital thank you for this video because i do feel so alone n down thank u ,how is he now by the way has he recovered many thanks just wanting to know as im wanting to make full recovery x