There MAY be other yet-to-be-validated variations of HSV-1 gone wild, as well. I've had HSV since I was a child and have over the years noticed other potentially nerve related symptoms, that were unexplained by my doctors: growing ringing in the ears with commensurate loss of hearing, mild memory loss, mild difficulties with speech, hot spots and tingling in my skin in various places, and damage to my optic nerves.

My suggestions to my doctors about a potential cause and effect relationship with HSV and its ilk always fell on deaf ears. Valacyclovir has provided slowly diminishing relief and now I must convince a doctor that the more recent acyclovir is worth trying. I know...good luck with that.

(c) 2011

This was enlightening! I was diagnosed with Encephalitis almost 17 years ago (when I was 25), but a cause was never determined. I had similar symptoms for a couple of months and eventually lapsed into a coma. I woke up about 6 weeks later, went through rehab and have completely recovered aside from some manageable memory issues. I'm anxious to discuss this with my doctors to see what they think.

Learn more about the impact of encephalitis from the people it has touched. Visit the website of Encephalitis Global Inc. ( www.encephalitisglobal.org ), where survivors, caregivers and loved ones share information and support, every day. High five to Ingrid for sharing her story!

Wendy Station, survivor
HSE 1999

Excuse me, but while encephalitis from Herpes Simplex I is really rare, equine encephalitis has very similar symptoms and is common enough that it should have been recognized.

YIKES!!! I get fever blisters. Scary as hell

I wonder if the Shingles vaccination would help for people that get cold sores? Since cold sores are a form of herpes.

Herpes in the mouth, who ever would have thought. But the article did say that only .01% of the population get the more serious complications associated with the virus, such as Encephalitis in the Brain.

A cold sore is nothing to sneeze at (pun) beside being ugly it hurts. Herpes is so contagious, and can migrate to anyone who comes in contact with it.

The Virus, no cure has been found as of yet, in the mean time more information should be put out to protect the citizens. The medical establishment should stop being so pc, and just give the people the raw ugly facts, about Herpes.

This story sounds like a "House" episode! Its TBI...no its a brain tumor...then it turns out its a rare condition that they start treatment for before the tests come back!!! Glad they caught it and dude's getting better..

I use the amino acid lysine every day to help prevent a herpes outbreak. Lysine suppresses the activity of the virus and is not a drug. If I do get an outbreak, I take megadoses of lysine and also apply it topically right on the blister. This takes the pain out of it almost immediately.

This encephalitis showing up with no outbreak symptoms is really scary.

There is now a herpes simplex B (genital) vaccine in the works. It should be a short hop to tweak it for the A (oral) virus. Here's hoping.

There are many types of encephalitis and Maryn wrote about this man and also quoted me because I had the same type as he did. The support group at Inspire that Wendy mentions above, has almost 1500 members from all over the world and there are all types of encephalitis that we discuss the residuals of. No matter which type you may get, it is horrendous and misdiagnosed a lot of times. Many of our members went to the ER only to be told to go home; they only had the flu. Many people die each year from E, too, but you don't hear about that. Families don't include the illness in the obituaries and the press doesn't think it's worthy of printing.

My husband had West Nile encephalitis. Mid 30s, no prior health conditions - a mosquito bite left him as a ventilator dependent quadraplegic for months. Unlike people with HSE, NOTHING could be done for him except supportive care. Almost 2 years later, he still suffers significant neuromuscular deficits, including respiratory issues. He was lucky that his medical team recognized encephalitis early and admitted him so he could be intubated. Otherwise, he would have died.

My father got this nearly over 12 years ago but no one at the hospital recognized it for over a week, meanwhile he slipped into a coma and suffered irreversible brain damage. 12 years later he is in a wheelchair and can hardly function, and has gotten progressively worse as he ages (84 years old now). Its tragic and still makes me angry when I think about the bad diagnoses he received (stroke, or alchohol withdrawl - wtf?)

A few years ago I had a very bad case of viral pneumonia for approximately three months, and eventually I had it so long that it apparently got into my brain. One day I was riding home after a very hard day at work, and for some reason my brain kept forcing me to slow down. The cars behind me were getting impatient (it was a two lane roadway), and I even started to get upset with myself, since I was having a very difficult time maintaining my speed at the speed limit which was 50 mph. Suddenly just as I had got my car back up to speed at 50 mph for about the third or fourth time, and I was lifting a snack up to my mouth to try to give my brain some energy, I suddenly passed out at 50 mph. Fortunately the bouncing of the vehicle woke me up when my vehicle left the road, and I woke up just in time to swerve from T-boning a service vehicle parked perpendicular by the side of the road, although I did graze the front part of the service vehicle with my driver's side door. Afterward, I realized that this virus had affected my visual cortex, so that even though I was only driving 50 mph, it was still enough to overwhelm my visual cortex and cause me to black out, the way that drivers who are trying to set land speed records can sometimes be affected. Ever since then I have wondered just how many people who are sick with viral infections pass out behind the wheel while driving. This is the first time I have ever heard of it happening to someone else, so I just wanted to share my experience. - Rick Carter

This happened to my dad two years ago this August. It was extraordinarily scary and, while for the most part he appears to be better, he still has lingering memory issues etc as descibed in the article. Luckily his doctors caught it right away, too. A recent CAT scan after a fall showed that even though he is 'better' there is still a fair amount of scar tissue in the area the encephalitis attacked.

This is nothing to joke about at all. My sister died last year from encephalitis. No one in our family had a clue about the Herpes virus causing this until her death. We all wonder now about what could happen to any of us if we had the virus.

Thanks be to God, with everyone telling their stories of struggle and hope. May you all share your experiences with others, and be there for others when they are struggling themselves. God bless you all.

This happened to my mom one year ago. Started out as a headache for 3 days, then got dazed and confused. They thought she was having a stroke. She sat in the ER all day and was in a semi-coma. Then was seen by a neuro doctor the next day and he realized what was going on. She spent 9 days in the hospital and her brain bleed. She is now disabled from it and has all the typical symptoms. She is 59. I see some stories of younger people but typical most people are older. I think that's interesting. They told her it was probably from a tick or mosquito bite that caused her encephalitis.

A man who works for us was a victim of encephalitis. He thought it was just the flu. He had a bad headache. Over a period of days the headache got worse and his wife finally insisted he go the hospital. He collapsed in their front yard and slipped into a coma. He wasn't expected to live but he managed to hang on. It was still devastating to their lives. He couldn't work for a long time and their credit was ruined. He does fine for us now, but he can do well what he did before he was sick. He can't really learn new tasks. He's a very nice guy but has a few personality quirks he picked up from this. Fortunately those quirks don't affect his job performance at all.

I would like to see the world be informed more of Encephalitis. When I say world, I mean the medical field, parents, paramedics, first reponders, etc. My friend lost her 14 year old daughter to this disease in January of 2010. She was first told that it was the flu and sent home. When she progressively got worse on Christmas Day, they took her back to the hospital. She was transferred to a larger university hospital were the diagnosis was given. By this time she was having seizures and they had to sedate her. She fought for a month before her body couldn't take anymore. This was the first time I had heard of this disease and the rarity of its occurance. Please help spread this word because the pain of my friend losing her daughter should not be felt by others but prevented.

My friend lost her 14 year old daughter in 2010 from Encephalitis. I feel that more research, speeches, training, etc. should be given across the country to all hospital staffers. I had never heard of this disease until she was diganosed at a university hospital. The fact that this can go undected and be diganosed wrong (which in her cause was the first trip to the hospital - diganosed with the flu) because of the rarity of this disease is overwhelming scary. The pain of losing her daughter is not a pain I want to see others go through.

This is my uncle Steve in the artice and I will have to say this was shocking. Having spent my life in the medical field I had no idea this could happen. Here we were thinking, "it's a brain tumor" and planning our flight home preparing for the worst case. I am so thrilled that this article was written to help other families. We are so thankful that he is doing well and still a part of our family. We love you uncle Steve!!!

 My Dad had this illness.  It took 4 days for the hospital to start the Acyclovir.  He suffered profound neurological damage and died 9 months later.  I wish I would have known more, as I would have pushed the hospital to begin the anti-virals sooner.  I hope this article will help another family avoid this heartbreak.

I do hope all of you survivors plan on joining our support group at www.encephalitisglobal.org and, for those of you who can, post this article on Facebook. I have printed a copy and will be sending it to my neurologist as well. He is not the wonderful doctor who diagnosed me so I want him to see what I went through and what others go through.

Herpes Simplex is not the only virus of the herpes family to cause encephalitis. I have a very good friend who is recovering from Herpes Zoster encephalitis. It is rare, but extremely debilitating. This poor soul was hospitalized for almost 4 months. It took an infectious disease specialist to even understand what his initial problem was. There is a vaccination for Herpes Zoster. It is called Zostavax, and it helps prevent shingles. My friend's disease was Shingles of the brain.