concerned

[dizzybee]

I've been reading some symptoms here and I am afraid that m story is not very different. I am not sure what i have. The doctor said that I show that i have EBV, and that it was resulted re-activated. I also have type 1 herpes simplex. Both 90% od the population contract at some point right? so whydoes it affect me? he said my response is low. Vitamin d was 9.8 and he put me on acyclovir. The past week i've had reallly sever agitation, aggression, light-headedness and feelings of blacking out. I read the side effects of the acyclovir and yup, the drug is causing me those set backs. I don't need any more dizzyness as i've had this, plus several other symptoms like groin pain, horrible fatigue, spaghetti leg when walking sometims not even able to move my legs i am so tired, pain in my scalp. I was diagnosed with CFS, chronic fatigue syndrome at about 21- and iI was out of ciruclation of my life for an entire year i could nothing until this doctor helped me wth herbs, but that was so long ago. I guess my question is how long will this go away and what if I can't get back to work- i have been on disability for the past 8 weeks and the way I feel, I am not able to drive and unable to walk. THe only thing that keeps me sane is my books. ANy suggestions on a neurologist? i want a second opinion. Thanks

[9DodgeFan]

It sounds like you're on the right track, at least with doing what you can do to help yourself.  Getting a lot of rest (which, as you said, is the only "prescription" you can get), and seeing a neurologst for testing are both very smart moves.  Hopefully you will get some more answers soon on this... I wish you the best!

[dizzybee]

Thanks- my neurologist told me there's nothing he can give me for EBV. NOTHING. I have to rest and he's running some tests to check the level of inflammation in my body and to test my nerves as I have little reflexes in my arems and legs...I can't believe it's this bad. I underestimated what this really is. Thanks for responding. God Bless.

[dizzybee]

Hi, thanks for your post. When I was diagnosed I was 21. It was so long ago I don't remember the details. I am now 36. He did tell me it will never go away, but I have struggled with it these past 15 years, resting when I could. I had no idea about EBV and it tooke me a bit over a year to fully recover. AFter 15 years, I am afraid that plus the herpes virus 1 simplex has caused havoc in my body. I kept telling my GP that I felt like i had pnemonia, they never did any blood tests for anything else and I feel a little lost and angry at them and myself. I know God will bring me through this. I just went back to the neurologist - he is testing for ms and other things- but he knows the EBV is very serious and that it takes a while. I've been out of work since November 30th 2011. It is now affecting my nervous system if I walk formore than 15 mins my legs shake terribly and additional symptoms. I AM ALWAYS TIRED. So i think there maybe more going on besides the CFS which can lead to MS or other diseases that mimic MS. I am still confused.

[9DodgeFan]

You said you were diagnosed with CFS... who gave you that diagnosis?  Are you still seeing that doctor?  Because chances are, that doctor should also know a lot about EBV.  I'm also a bit confused on your CFS dx; are you saying after that year or so, you got better, and have been better until now?  I don't know if that's what you're saying or not, but I'm sure you know CFS is a life-long ordeal (unfortunately), which there can/will be many ups and downs.  I know you probably won't like this story, but I'll tell you it because it's true.  My aunt (now in her 40's) was diagnosed with CFS when she was like 20.  She was still able to finish school and then work, but eventually it got to where she couldn't work anymore, and she has been on disability ever since.  Fortunately she has made some improvements (which she has had to work VERY hard at; such as eating almost strictly just vegetables/fruit, doing lite workouts, etc.), but she is still very easily fatigued.  I guess my point is that, given your CFS dx, I would say the symptoms you're talking about are to be expected.  I wish PlateletGal was still on here, as she had a ton of information about CFS; you can still find most of it in older posts here though, if you browse the forum.  It might be a good idea to get a second opinion from a neurologist, just to rule out FM; if nothing else, it would at least give you peace of mind.  Anyway, best of luck to you, and hope you start feeling better!

[sporque]

No, and you can probably drop the acilclovir, no study has shown it really does anything to shorten the duration of "symptoms" related to EBV.  Expect 6 months to 1 year to make a big turn in the illness..Mononucleosis can take many forms, sounds like you need to keep resting!!