Post-viral EBV

I posted here at the beginning of the year about my illness and my diagnoses. At this point I'd like to hear from anyone who's developed "post-viral" symptoms after contracting and going through the initial phases of EBV. I'm 6 months in, and will say, I don't feel like I did back in March. But I don't feel well still yet, I don't feel right at all. A lot of my previous symptoms subsided around April, as far as muscle aches and pains and extreme fatigue and nausea. But I still feel like something is really wrong. I know for sure, either I am ill in some way that hasn't been detected, or I am some sort of depressed and not diagnosed. I feel so dead headed some days, hard to concentrate. Most days I feel very detached and unreal, I just do not feel alive at all (and I mean that in a literal sense). My passion for things I used to enjoy is mostly gone. I don't feel like me at all, I feel like someone else. I fear for my life a lot. I have read that this is very descriptive of anxiety disorder. I have also read that it can be connected to fungal infections like candida oddly enough, people who have that experience these same strange feelings. I've not been tested for that, not sure if there is a way to remedy such and infection at home if that were somehow the case. Also read Lyme mentioned a lot on here, people experiencing similar things due to Lyme but tend to have a hard time getting an accurate diagnosis? My D levels were low back in March, but I took 50000 mg to bring them up to speed. Was told everything else was normal. I've read a lot of talk about B-12 around here, not sure what it is? I am also experiencing a lot of aches and pressure in the nose throat an ear areas. Like my sinus are always making my head feel like it wants to explode. I was treated for an ear infection in March, took amox I think 700 mg. Maybe it has returned or never cleared up?

I'd like to hear from anyone who's ever experienced similar symptoms and feelings for a prolonged period after a viral infection, of any sort really. I feel like no one really understands what I'm saying when I try to describe what's wrong with me now. I try to just ignore it all on a daily basis, but it still gets the best of me. Don't know what to do, or what to consider right now. But I have to choose wisely because as far as doctors are concerned, I'm uninsured and doctors visits and tests are very costly and I have to make payments. I cannot afford a million dollar work up. I just want an answer as to what's wrong.

Post Edited (needsomehelp22) : 6/14/2012 10:27:05 PM (GMT-6)

Hey there, I had EBV back in November of 2010 and, much like you, never felt the same again. I also diagnosed with CFS, GERD, and Leaky Gut Syndrome... Anyway, but I still never felt good after I was told the my EBV symptoms would eventually go away. Didn't happen. :/ So after many different doctors and tests I was officially diagnosed with Chronic Epstein Barr Disease. It's when EBV stays active in your system for more than 4 months (it's been nearly 2 years for me) while keeping up its severity. So basically EBV that doesn't go away (sound familiar??).

Maybe you have something like that? I was diagnosed with a simple blood test. Super easy. But you have to look for the Chronic EB Disease. I went a year undiagnosed just because they never looked for the right thing. But just keep your head up and try to find a doctor that is willing to search with you for the answer!

Hope this helped! And so sorry you're still not feeling better...Hang in there. :)

Post Edited (AlliMuses) : 7/17/2012 7:50:44 AM (GMT-6)

I totally understand your pain! And I went undiagnosed for over a year, so I definitely heard a lot of doctors tell me I probably *used* to have EBV. But finally one doctor decided to test to see if I maybe had an active case of EBV. And indeed I did! So after confirming that it was still active, they did another test to see how active. I got a 4, I think there is a scale between 1 (being a pretty minor case) through 5 (being an extremely active case). It was so relieving to find out that it wasn't just all in my head and that I was more than "just a little tired" as everyone tried so hard to convince me of! Anyway, so I'd stronger suggest getting another test done with the numbers things. Maybe you'll finally get some solid evidence of what's really going on inside. :)

Hi needsomehelp22
I have recently (Sept 2012) been diagnosed with Post-Viral Fatigue Syndrome (PVFS) which was brought on by two viruses CMV and EMV (diagnosed in August - a week after my 30th). Research I have done has shown that PVFS and CFS are the same thing (after six months). I believe it is the same here in Australia, as my Dr mentioned to me earlier on that the reason why she was writing PVFS was because insurance companies and most companies do not like the term CFS. I have been off work since early September with this condition. Pre-illness I was very active and on the go up early to go to gym and late to bed. I was a social butterfly seeing friends, interested in their lives and loved being involved and amongst them.

I too am going through finding out what is wrong, why is it taking awhile to disappear. I started to feel unwell in June 2012 however, no idea as to why I was still feeling crappy until August 2012. I would say if I count from June, it has been almost six months in and I am over it. I thought for the initial two months that I just had viruses and they will go away, well... not really, the tests in August came back positive to CMV and EMV.

I have tried to go back to work but failed twice. I am now on leave until the new year. I am concerned going back as I am worried that I will not be strong enough. This is the toughest thing I have ever had to fight and get over sickness wise.

Concentration is my main issue and the main reason why I am not at work, I still get the feeling ill (like I am going to be sick), I still get headaches (horrible ones when I push). My symptoms are still ongoing and I wish would subside and take a back seat.

I have just had a test for my bloods and for B12 which was low, hopefully this has increased since taking tablets and other various supplements.

Good luck, I hope you are feeling a little bit better, a couple of months down the track.

needsomehelp22 said...
I posted here at the beginning of the year about my illness and my diagnoses. At this point I'd like to hear from anyone who's developed "post-viral" symptoms after contracting and going through the initial phases of EBV. I'm 6 months in, and will say, I don't feel like I did back in March. But I don't feel well still yet, I don't feel right at all. A lot of my previous symptoms subsided around April, as far as muscle aches and pains and extreme fatigue and nausea. But I still feel like something is really wrong. I know for sure, either I am ill in some way that hasn't been detected, or I am some sort of depressed and not diagnosed. I feel so dead headed some days, hard to concentrate. Most days I feel very detached and unreal, I just do not feel alive at all (and I mean that in a literal sense). My passion for things I used to enjoy is mostly gone. I don't feel like me at all, I feel like someone else. I fear for my life a lot. I have read that this is very descriptive of anxiety disorder. I have also read that it can be connected to fungal infections like candida oddly enough, people who have that experience these same strange feelings. I've not been tested for that, not sure if there is a way to remedy such and infection at home if that were somehow the case. Also read Lyme mentioned a lot on here, people experiencing similar things due to Lyme but tend to have a hard time getting an accurate diagnosis? My D levels were low back in March, but I took 50000 mg to bring them up to speed. Was told everything else was normal. I've read a lot of talk about B-12 around here, not sure what it is? I am also experiencing a lot of aches and pressure in the nose throat an ear areas. Like my sinus are always making my head feel like it wants to explode. I was treated for an ear infection in March, took amox I think 700 mg. Maybe it has returned or never cleared up?

I'd like to hear from anyone who's ever experienced similar symptoms and feelings for a prolonged period after a viral infection, of any sort really. I feel like no one really understands what I'm saying when I try to describe what's wrong with me now. I try to just ignore it all on a daily basis, but it still gets the best of me. Don't know what to do, or what to consider right now. But I have to choose wisely because as far as doctors are concerned, I'm uninsured and doctors visits and tests are very costly and I have to make payments. I cannot afford a million dollar work up. I just want an answer as to what's wrong.

I've been experiencing something very similar since Feb 2012. Started with muscle aches/light sensitivity after a mild upper respiratory illness and has created a myriad of symptoms since. Developed sensitive skin to the touch, muscle/body aches, headaches, neck/shoulder pain, mild anxiety, sinusitis, and more. Saw multiple neurologists, Gp's, Rheumatologist, eye doctor, infectious disease specialist, and interalist.

After thinking i had neuropathy, lymes, MS, etc. it was finally discovered in August that I tested positive for 4 strains of the Coxsackie A virus. The Dr. assured me these symptoms were all linked to Coxsackie and Paranasal Sinus Inflammatory Disease (which showed up in an MRI done last winter) and would go away on their own.

Been trying to eat healthier and take Cat's Claw / echinacea to boost my immune system and kick this quicker. Feel better everyone!