My name is John. My wife is not doing well with her encephalitis diegnoses since July 2019. I'm desperately looking for help. We are based in London but more then happy to travel with my wife, to meet you Profesor Solomon or some right professional with your recommendation. Her condition is deteriorating. I will be greatly appreciate if you find the spare moment of your very busy schedule and give me idea how you can help as. Doctor, I place our hope in you. We will wait with hope for your reply. With the best wishes and regards John
Thank you for reaching out to us John, and we are so sorry to hear of your wife's encephalitis diagnosis in July 2019. Please get in touch with our support team at support@encephalitis.info, or you can call us on 01653699599. You are not alone - we are here for you.
Thank you so much for this video. I was diagnosed with this in October 2020 and still have severe memory problems not recognising my children or husband or numbers which is tricky for a chartered accountant!
Thank you for watching Jeni! We are so sorry to hear of your encephalitis diagnosis in October 2020. Please don't hesitate to reach out to support@encephalitis.info or call +44(0)1653 699 599 any time you need support or have a questions about encephalitis and it's outcomes. You are not alone - we are here for you.
I had Herpes Simplex Viral encephalitis as a 1 year old in the 1970's. I was in ICU for six weeks. The Walton Centre know me well! Thanks so much Professor Solomon much appreciated.
I did used to have convulsions until I was 17, but I never really had any memory problems. I have got a great memory to be honest which not many people who have had encephalitis can say that! I am better at recognising people's voices than their faces especially if I haven't seen them for years, because sometimes they change their appearance and I have to think and look twice. I have been known to get lost in unfamiliar places or if I haven't been there for years or a new place, well I am no good with street names but I am much better where there are more landmarks around, and in some areas there are no landmarks so I avoid those places. I don't think this would be classed as having poor memory problems though.
Thank you for this information, much appreciated. Struggling with encephalitis at the moment and my memory is badly affected at times. Also really fatigued and having tremendously bad headaches.
You are not alone, virgil_tb2. Please don't hesitate to reach out to us at support@encephalitis.info should you need any support, information or signposting.
My dad (over 60), is recovering well from it. Memory and speech improving. He is just very very aggressive. Very frustrating. It's a very slow progress unfortunately. It has been over 4 months.
Thank you for your comment, Devrim. We are so sorry to hear of your dad's recent HSV encephalitis, and the outcomes he has been experiencing since. We are here for you both - please don't hesitate to reach out to support@encephalitis.info for some support.
My Mum ( 85 ) has come out of hospital bit has severe short-term memory issues and is not becoming aggressive on occasion - she is also very depressed. I hope your dad conitnues to improve.
Thank you for your comment, Kayce, and I am so sorry to hear of your close relative's HSV Encephalitis. We are here for you - please don't hesitate to reach out to us at support@encephalitis.info, or call +44(0)1653 699599 if you have any questions.
My heart is filled with gratitude as I'm sharing my testimony to the entire universe on how herbal doctor oduntun cured me from herpes virus that has been spreading through my body, I suffered from herpes virus since 2007 I often see symptoms in my private area nd lips, anytime I use acyclovir drugs it will go away then return some months later. It was disheartening since i have been diagnosed but after finding herbalist oduntun and his reviews on instagram @herbalist_oduntun i was convinced that he meant be of great help to me so I contacted him to know more about his herbal products and how I can get it delivered to me here in Tajikistan, He then said that he will deliver the herbal package to me through the ups delivery service with the address I will provide that is after preparing the medication with the roots and herbs ingredients he will purchase from the traditional market, so I keep faith believing that I can be cured completely with what comes from nature since it herbal medicine i took the risk and pay him the amount he requested to get the ingredients he started preparation as soon as I send him the money and submit my home address for the delivery today I'm so happy sharing this to the world 🌍 I'm panalle Isabella from Italy, for more information on how to get in touch with herbal doctor oduntun you can reach him on What'sApp:+2349039463501 or his (email:herbalistoduntun@gmail.com) I'm a living testimony stay safe and stay bless 🙏🏼.
In Nz in 1998 when I was 23 I went to hospital with suspected meningitis, I had a lumber puncture and was diagnosed with HSV2 Meningitis/ suspected encephalitis. I was treated with IV Aciclovir for 10 days. I'm just wondering although mentioned in writing about HSV2 being a cause of encephalitis why it was not discussed on the video? I appreciate the info that you have on your website as for years and years I didn't understand fully what had happened to me (I didn't have Google or computers back then!) and all the long term after effects of having it nor did the doctors when I've asked for help for the after effects of what happened. Most doctors haven't even heard of it here so I've never had care or support specific to the ongoing issues that occurred from the event from 23 years ago. But as mentioned before just wondering why HSV2 isn't discussed more?.
My wife had HSE back in May. She had her neuro psychologist video conference yesterday. She has severe memory problems. Problem at the start it was diagnosed as covid19 until we drove 200 miles and got a negative test , only then did the hospital look for something else. By the time she was put on antivirals she couldn’t tip her head forward from the pain in the back of her head. Been a real crappy 6 months to be honest.
Hi cowsmart11, I am so sorry to hear of your wife's HSE and the challenges you have both faced since May. Please get in touch with support@encephalitis.info, or give us a ring on 01653699599 for some support. You are not alone - we are here for you.
Hello I had the cold sore virus a lot for my whole life when I had the flu and than I had optic neuritis when I was 14 and than a year later my personality started changed and the neurologist could not find the problem and I was put in hospital and slipped into a coma and the mri had multiple focal and bi focal lesions and demyelination and still doc could not find the cause of my condition but my dad said I used to get fever blisters and I tested positive for it. So I was in hospital for like 2 months and I could not walk and stuff but I pulled through and I was put on long term valacyclovir meds indefinitely.
Thank you for your comment and sharing some of your story with us Loren. You are not alone - we are here for you. Please don't hesitate to reach out to us at support@encephalitis.info or call us on +44(0)1653699599 for some support.
Thank you for this presentation as I have wanted to know more about this illness. Do patients remember anything about the illness; strange feelings? I do wonder how patients feel while they are in the catatonic state. Is there any way to find out?
My dad has been on acyclovir +mannitol +dexamethasone for 19 days, every time the doctors stop the treatment with dexamethasone he is in coma like situation and he is continuously moving his arms and legs. There's no improvement.
Thank you for your comment, Katerina, and I am so sorry to hear of your dad's encephalitis. We are here for you, please don't hesitate to send any questions you have to support@encephalitis.info, or call us on +44 (0)1653 699599. You are not alone.
Sir,I had unprotected sex with my girlfriend 5 months back. We both got tested for vdrl rpr,HBsAg,Hiv tridot all after their window periods. The doctor did not recommend herpes testing since we both have no lesions or the typical pimple like structure whatsoever. I m a bit concerned about this encephalitis thing. What do you suggest? Also they say herpes is no big deal at all and also chances of false positive is scaring me as well. Help.
Around 90% of adults become infected with a herpes virus (HSV1) during their lifetime. While the virus is widespread, Herpes Simplex Encephalitis (HSE) is rare. There is no known cure to the herpes virus. If you are concerned about developing HSE, you can inform yourself of the symptoms here: www.encephalitis.info/herpessimplexvirusencephalitis, as rapid diagnosis and treatment reduces mortality and improves the outcomes. Most adults with the herpes virus will not develop an encephalitis, and we still don't know why the virus is able to gain access to the brain in some people, but not in others. Although the development of vaccine has been an area of research, vaccination to prevent infection with herpes simplex virus is not yet available.
Thank you for watching, and for your comment C Whit. A causal link between HSV1 and Alzheimer's disease has yet to be proven, you can learn more here: www.encephalitis.info/herpessimplexvirusencephalitis under "HSE and the risk of developing Alzheimer's", towards the bottom of the page.
I have genetial herpes and Herpetic whitlow. After giving birth I feel like I’m having more recurring flare ups. Does this mean I’m more prone to getting encephalitis? Do I have to continuously take acyclovir? I stoped taking it as it caused me headaches.
Hi.. I had HSV Encephalitis about 3 years ago. I was in Tweed Heads Hospital here in Australia for 5weeks. I was 60 yrs old at the time.. Very Fit and Healthy. I have absolutely no memory of the Hospital but apparently I had a lot of visitors and had conversations? Now 3 years later I have completely no Sense of Smell and still get tired easily.. I went from 84kg (Before Illness) Down to 58kg.. I’m at 72kg and steady. My memory is still bad but all up doing OK.
Thanks for your comment Robnation! Our support team are here to answer your questions about encephalitis - you can reach out at support@encephalitis.info, or call us on +44(0)1653699599.
Dokter can you please help me ..its on my medical list ..they dont do anything ..i also have cassandra syndrome ..im so sick nobody helps me in belgium .....
My 7-year-old daughter was diagnosed with ANTI-NMDA Receptor encephalitis 45 days ago. My daughter was treated with ivig and plasmapheresis. She was given 4 doses of rituxsimub, but she still hasn't recovered, why is she recovering so slowly.
I have been getting cold sours since I was 10. I think a neighbor gave it to me. About a day or two (before the blisters come on) I have bad headaches and my limbs thrash about right before I go to sleep and my wife tells me I do it while I'm sleeping. I feel ill right before also. Anybody else get sick Before the blisters start? I use Blistex or Carmex as soon as I feel the tingling, It shortens the blister period.
Please talk to your doctor about your headaches and limb thrashing, Christopher. If your wife can take a film of how your limbs thrash in your sleep that would be helpful to show the doctor.
We are so sorry to hear your brother is in the ICU with encephalitis, Katherine. Please don't hesitate to reach out to our support team with any questions you have at support@encephalitis.info or you can call us on +44(0)1653699599. You are not alone - we are here for you.
Thank you for your question, Hector. It would depend on the type of encephalitis, with most infectious types typically presenting acutely. Our support team run an information, advice and support service over on support@encephalitis.info, or +44(0)1653699599, and are there to answer your questions if you would like to send them over/call in.
I believe I’ve had this for years, I had stacks of tests some years ago with no result diagnosis. Then After COVID19 infection and Long Covid it seems to have reappeared and a blood test had revealed a virus in my brain. The pressure in my brain comes and goes and is very painful, even coughing or sneezing is so painful, plus I get pressure in my eyes. I’ve not told my doctor of the symptoms I don’t want them to think I’m a hypochondriac.
Well I haven't heard of 'mild chronic' before, either mild or chronic. As far as I'm aware I THINK that everyone usually goes through the acute phase of the illness to start with, but the severity of symptoms depends usually dependson the cause. Treatments include steroids if its 'autoimmune' but if it's 'viral' they usually use acyclovir to reduce the brain inflammation (swelling) and after affects vary from person to person. I'm not a medical I'm just a volunteer so I know quite a bit but not how to treat individuals or diagnose them etc but I can signpost people to the right professionals etc and/or I sometimes look into some cases to look up things for them and they can come back to me whenever need be. I am always willing to help if possible. I might yet do that for someone else yet.
You would need to have the herpes virus to have herpes encephalitis, however only a very small percentage of people with the herpes virus will develop herpes encephalitis. You can learn more here: www.encephalitis.info/herpessimplexvirusencephalitis
My son diagnosed herpes simplex encephalitis a month ago.. he can read he can write but the problem is he dont understand what he reads.. and he is confused in many people talking..he is only 23 years old..
Thank you for sharing your experience with us, Zenaida, we are so sorry to hear of your son's encephalitis a month ago. You are not alone, we are here for you and your family. 1 month is very early in a recovery from encephalitis, and fatigue is a very common after-effect which can affect a host of things including reading comprehension. You can learn more about fatigue here: www.encephalitis.info/managing-fatigue-after-encephalitis. Please do reach out to our support team at support@encephalitis.info, or +44(0)1653699599 with any questions you have, we are here to help.
Thank you for watching, and for your comment Zanaida. You can learn more about the recovery here: www.encephalitis.info/encephalitisafter-effects-recovery-and-rehabilitation
Can herpes effect the spine causing cramped muscles and nerve pain? every time my partner has a cold sore she also has painful full body spasm seizures and needs hospital treatment, but they just say it’s FND ?
We are so sorry to hear of your encephalitis, Afroja. You are not alone - we are here for you. Please reach out to support@encephalitis.info for support, information and advice.
Thank you for your comment blaeck_kitty. Both types of Herpes Simplex virus can cause encephalitis: HSE is a type of infectious encephalitis which happens when herpes simplex virus (HSV) enters the brain. HSV can be of two types: HSV1 and HSV2. HSV1 is mainly associated with infections of mouth and throat early in life often without symptoms, but lately, it has also been associated with genital herpes. HSV2 is associated with genital herpes predominantly in adolescents and adults as it is transmitted through sexual activity. You can learn more here, on our website: www.encephalitis.info/herpessimplexvirusencephalitis
