Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Nov 8, 2012.

  1. Michele, I just read up on encephalitis and am VERY concerned for you! Since you mentioned your symptoms and the fact that you have reactivated herpes viruses, I felt I MUST share this with you.

    There are different types of encephalitis, but there is one brought on by the herpes viruses that can cause rapid death. I don't mean to scare you, but I would want to err on the side of caution with this.

    The info I read said that an MRI is the procedure of choice if herpes encephalitis is suspected. They can also monitor the electrical activity of the brain because Herpes Encephalitis produces a characteristic EEG pattern. It also mentioned that a DNA study called Polymerase Chain Reaction (PCR) has greatly improved the diagnosis of Herpes Encephalitis. So you don't have to get a spinal tap... they have better and less invasive methods to diagnose this now.

    The standard treatment is Acyclovir by I.V. for 2 to 3 weeks. But if you have this and it goes undiagnosed, it can cause rapid death. Did they check you for this while you were in the hospital? It doesn't sound like they did.

    If it were me, and in spite of how much I hate ER, I would go and ask them to check for the herpes encephalitis (since its the most dangerous type) as soon as possible. Not trying to tell you what to do, Michelle... just very concerned for you!

    Please let me know what you think and how you're doing...

    Praying very hard for you, Michele! May God be with you and guide you and heal and strengthen you, my friend! Please take good care of yourself, Michele!

    Blessings and Gentle Hugs,

  2. MicheleK

    MicheleK Member

    Hi Shel, I am on Valcyte, 3 grams a day. It is keeping the virus under control.

    The emergency room or hospital should have done a spinal tap and an MRI but since they saw ME/CFS on my chart, any serious medical care was not given to me.

    If it were not for my personal doctor who knows where i would be.

    I was originally put on 500mg of Valcyte 2x a day for 10 days. It helped. I began to feel better. But on the 3rd day of being off the antiviral all the symptoms suddenly came raging back. So I was put on 3x the dose.

    I have to say that at the higher dose I felt like I was getting my butt kicked. It took over a week just to get use to the higher dose physically. Now I am use to it.

    I am totally resting. I have been flat in bed. I am barely talking, and got some temporary help to cover me in most all the duties I am responsible for as far as advocacy, support group leading, etc.. I am resting my brain and my body very well.

    Please rest assured that I am getting good care now and am following educated medical advice. Thanks for caring. Hugs, Michele
  3. ...and to hear that you are doing ok and under a doctor's care that you trust. I couldn't help being concerned for you when I read what I did about the herpes encephalitis... hope you don't mind... I feel like you're a dear friend and didn't want anything bad to happen to you. So glad you're holding your own... I'm continuing to pray, Michele...

    I'm just so sorry to hear of everything you've been through! And the fact that the hospital didn't take your condition seriously once they saw ME/CFS on your chart is downright criminal and unacceptable! I can't help but wonder how much longer is this disease going to fall through the cracks before its pathology is common knowledge amongst doctors and hospitals??! It is just SO WRONG!! Praying about this as well! This is exactly why I fear going to the hospital! If you ever HAD to go back to a hospital, could you maybe try a different hospital and just not mention the ME/CFS?? Some hospitals seem to care more than others. We have 3 hospitals in my town, and one does seem more caring than the others... just a thought.

    But I'm glad you're home and are resting... and hopefully have someone to help take care of you, Michele. And I hope the Valcyte does the trick and knocks out these viruses that are causing you so much trouble.

    I am continuing to lift you up in prayer, Michele... and I'm asking my family to pray for you as well. God bless you, my friend. Keep me posted on how you're doing...

    Blessings and Gentle Hugs,