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encephgirl

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encephgirl

Hi everyone,

I have had herpes for 5 years. My story is a little different however. I do not have genital outbreaks. Instead I develope encephalitis on a recurrent basis.

I am, or was, an Oncology Nursing specialist married to a medical oncologist. I unknowingly contracted the disease from him. I found out he had herpes when I developed my initial episode of encphalitis.

I have had tooo many recurrences to count. Each involves 2 weeks of IV antivirals. While helpful, the damage caused to my brain by the virus doesn't heal. I am now on disability unable to work. I essentially have no short term memory, suffer incredible fatigue, poor concentration etc.

Anyone else with this?

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encephgirl

diagnosis

I was diagnosed after my friend, whom I was visiting, came home from work to find me unable to speak, move my head, open my eyes and vomitting.

The docs in the ER knew that I had encephalitis. They found out specifically what type by doing a spinal tap and sending the fluid for testing. As well, they did an EEG, CT and MRI. This all confirmed the diagnosis.

Turns out, I had a fairly severe case but I responded very well to the IV acyclovir and I recovered well.

My problems began when it recurred. That is even more unusual than getting it in the first place.

Currently, I have a gp, an infectious disease specialist, a neurologist and a neuropsychologist as physicians. They are puzzled by me. Few people survive to this point. Best they can offer is treatment for the recurrences, which ios the IV acyclovir again.

Primary problems are that the damaged brain tissue doesn't recover, thus the neruological symprotms, typing for example. Secondly, in order for the drug to get into my central nervous system, the dose has to be very high. Too high to be taken orally.

And my physician "friend" carrys on practicing oncology, sleeping around etc. Ask me if I am bitter!

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tohealth
Hi everyone,

I have had herpes for 5 years. My story is a little different however. I do not have genital outbreaks. Instead I develope encephalitis on a recurrent basis.

I am, or was, an Oncology Nursing specialist married to a medical oncologist. I unknowingly contracted the disease from him. I found out he had herpes when I developed my initial episode of encphalitis.

I have had tooo many recurrences to count. Each involves 2 weeks of IV antivirals. While helpful, the damage caused to my brain by the virus doesn't heal. I am now on disability unable to work. I essentially have no short term memory, suffer incredible fatigue, poor concentration etc.

Anyone else with this?

I was diagnosed after my friend, whom I was visiting, came home from work to find me unable to speak, move my head, open my eyes and vomitting.

The docs in the ER knew that I had encephalitis. They found out specifically what type by doing a spinal tap and sending the fluid for testing. As well, they did an EEG, CT and MRI. This all confirmed the diagnosis.

Turns out, I had a fairly severe case but I responded very well to the IV acyclovir and I recovered well.

My problems began when it recurred. That is even more unusual than getting it in the first place.

Currently, I have a gp, an infectious disease specialist, a neurologist and a neuropsychologist as physicians. They are puzzled by me. Few people survive to this point. Best they can offer is treatment for the recurrences, which ios the IV acyclovir again.

Primary problems are that the damaged brain tissue doesn't recover, thus the neruological symprotms, typing for example. Secondly, in order for the drug to get into my central nervous system, the dose has to be very high. Too high to be taken orally.

And my physician "friend" carrys on practicing oncology, sleeping around etc. Ask me if I am bitter!

When I saw your name, “encephgirl”, it immediately got my attention because of the connection b/t encephalitis and HSV. This is why some people here take this stuff seriously. This is why we don’t make light of some philandering boyfriend or husband scared to tell. This is why we get uptight about disclosure and the full range of the HSV experience—for some, an occasional inconvenience; for others, blindness, neurological deficits, tens of thousands of dollars in hospital bills, indefinite health complications.

You are quite rare. The fact that you are alive is rare. The fact that you are alive and able to write this post is downright amazing. I give you a big long hug. You make only the 2nd person I have learned of with this brand of complication (neurological) and the first person I am aware of with encephalitis. Heck I don’t even think I can find much information about recurrent encephalitis—haven’t looked lately, but there wasn’t even much info on recurrent meningitis as of a couple of years ago. Have you been captured by any medical journals? They thought I had encephalitis at first—I had all the symptoms you describe plus medical tests—all the same. I couldn’t even figure out how to operate a phone in my hands. I could be in the middle of a sentence (when I could talk) and not know what I had just said to finish the sentence. They eventually diagnosed it as meningitis, and like you I responded to the antivirals—and that’s another thing: <<tohealth vent starts here>> I get so sick of loud-and-long dumbasses coming to this forum who don’t even know what a virus is, plastering all their nonsense and lecturing me or anybody about possible “cures” and evil drug companies (thankfully not many). Scientifically I know there’s no cure and won’t be in our lifetime and why. But if there was a cure, TRUST US, people like YOU and ME would know; and we KNOW that however flawed or corrupt a drug company is, it was THEIR drugs, not an herbal “remedy” or crazy ass “Ozone therapy” that spared our brains from further injury and saved our damn lives in a gown on a gurney. <<sermonette over>>

My short term memory was altered as well. And there have been times when my sense of time has truly been beyond belief—3 hours feeling like 20 minutes; getting the days confused. I have had to over the years adapt to the brain changes as best I knew how—it’s not like there’s a book on this. One thing is I force myself to use lists even when I am sure I will remember something. I force myself to use brain tricks to store and manage memory—mnemonics, visual imagery like making a short movie in my head of something I need to do causes me to be more likely to do it and remember it than just intellectually deciding to do it. For whatever reason, when I get angry, my memory is greatly enhanced—don’t know why, but there’s something mobilized by anger that works like an asset for me. The mind is truly interesting. I’m sensitive to things now that I didn’t use to be—loud noises, for example. And it’s about first understanding how you have changed, and that itself is a serious challenge. Then figuring out how to compensate for the changes. It takes work. Seriously. I can’t even imagine having encephalitis. And recurrent encephalitis---one episode of meningitis is enough---I can’t even imagine. You’re amazing is all I can say. May you build on your strengths—and you have strengths because you wouldn’t be here otherwise, goodness knows. And I wish you selfishly focus your energy on improving yourself and not on bitterness---and I’m not saying don’t be bitter. I don’t believe in talking people out of how they actually feel---how you feel is real. I’m just saying I wish that you get some real benefit from how you use your energy and mental energy to help you.

Do you benefit from oral antivirals at all?

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encephgirl

I have tried oral anti virals, acyclovir and valtrex, but not effective. Problem is that I have to have a high enough dose of drug that it can penetrate the blood brain barrier to get at the virus in my brain.

Basically, impossible to take enough oral drugs for this to happen.

Thank you so much for your kind words. Can;t tell you what it means coming from someone who truly appreciates this type of disease.

Will pm you again later.

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