Post-viral EBV

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needsomehelp22
Regular Member


Date Joined Jan 2012
Total Posts : 24
   Posted 6/14/2012 9:13 PM (GMT -7)   
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)


Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 6/23/2012 3:50 PM (GMT -7)   
I have been dx with post viral fatigue syndrome.  I am 20 months into it after a routine bout with the flu.  Pre illness I was a work out junkie, doing triathlons and 10k races.  I am 49 years old, this took me by complete surprise as I always tried to live healthy.  I have improved a bit, probably from 60% pre illness level of functioning to 70%.  The first 8-9 months were terrifying.....what was happening, why could I not get better from what seemed like a simple illness?  All the tests, etc.  I know my endocrine system was thrown off, and I feel some of the supplements have helped me.  But, I sure miss my old self even though I may not be as bad off as many PWQC's.  My advice is to get all the tests done on thyroid, adrenals, endocrine, and blood of course.  I even had a spinal tap as I was getting headaches at the start of all this.  I know this can be a long road, but try to eat as healthy as you can, and see if any tests show deficiencies.  I am back to exercising a bit now which is great, but nowhere near what I used to do.  By far the hardest thing I have ever had to deal with in my life.

AlliMuses
New Member


Date Joined Jul 2012
Total Posts : 11
   Posted 7/16/2012 7:26 PM (GMT -7)   
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)


Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 7/17/2012 6:48 AM (GMT -7)   
Alli-Thank you so much for the reply, interesting to hear your story, and the similarity to my own.  I guess having a known incident to kick this off somewhat narrows down what has happened internally....a virus which then did something to throw off things internally.  I too had a stomach issue 7 months ago where I had some erosion of tissue, etc.  As if I didn't have enough to deal with.  I did resolve this with a strong pro biotic which seems to be working to this day.  With your EB results....did you get an actual number?  I had my testing done at the Mayo clinic here in MN, and it only said I was "positive" by 2 of the 3 tests for EBV.  They interpreted this as not having an active virus, but one that had been recently, and in my system of course.  They brushed this off as saying most everyone has this in their system, and since it was not currently active, there was really nothing to prescribe.  I have just started a supplement called ImmunoStim at the suggestion of another person with ME/post viral, and 3 weeks into this it seems to have helped just a bit.  Anyway, give me your opinion on the EBV results.  My guess is that I should probably have this done again with the actual numbers to see where things are at.  Some people have taken anti viral medications with some success due to knowing that was the onset.  Unreal what these viruses can do inside a persons body.

AlliMuses
New Member


Date Joined Jul 2012
Total Posts : 11
   Posted 7/17/2012 7:06 AM (GMT -7)   
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. :)

Marrit
Regular Member


Date Joined Jan 2012
Total Posts : 146
   Posted 7/21/2012 3:30 PM (GMT -7)   
Needsomehelp, i got sick about 15 years ago and I've always said I feel like my body has been hijacked by some alien invader. I am not the same person I was -- and I do understand your loss of interest in things you used to like to do as well.
I do believe there was (is?) some infectious agent that caused this mess and not EBV. EBV becomes reactivated because something else has taken down the immune system. That something else is unknown currently. The mental stuff is the
hardest for me. I have to work hard at retaining -- or regaining when I fail --a positive outlook. Hard when life is passing you by.

I would suggest going online to directlabs.com and ordering a complete blood check. It's about $99 but you can usually find a coupon online for a discount. Sometimes they offer a killer sale for much less. That will give you a CBC, electrolyte panel, thyroid, and metabolic profile. You need to have a LabCorp near by to get your blood drawn.

When I had no insurance I used directlabs a lot and ordered all my own blood tests. You can go to labtestsonline if you don't understand the results and get an explanation and you can even send an e-mail to a lab specialist. They will answer questions for free.

Jayci168
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/16/2012 12:17 AM (GMT -7)   
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.

lindsay0891
Regular Member


Date Joined Jul 2012
Total Posts : 302
   Posted 11/16/2012 4:41 PM (GMT -7)   
I'm pretty sure this is what I'm going through. Wondering if you guys have a lot of digestive symptoms like I do. I have horrible gas and some waves of nausea. I also get lightheadedness and some fatigue. The only thing doctors have found in my blood is EBV, and this all started with a viral illness in the spring. There is a lot of variation in my symptoms, I have good days and bad days. Typically now I'll have about two weeks of feeling good and a week of feeling bad. Overall I'm better than I was which to me is a clue that it's a viral illness rather than a serious condition. I'm trying to eat healthy and stay positive but I'm wondering if there is anything else I can do.

Hangin99
New Member


Date Joined Nov 2012
Total Posts : 1
   Posted 11/20/2012 9:47 AM (GMT -7)   
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!

Coxsakie b
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/19/2013 7:42 PM (GMT -7)   
Omg!!!! Have all of you been living my life for the last 24 months? while living in fla I came to visit my son and granddaughter in Texas. Flew back home, had a lady over in atlanta. Got something to eat. Got home went to work. The last thing I remember is showing everyone at work the pics I took. Apparently I went to work every every day for 2 1/2 weeks. I do not remember it at all. My cubie said I kept saying I had a headache, my leg hurt and my eye was hurting. On July 27 2011 I am told that my left side of my face had drooped and I could not talk so my family called a ambulance. I don't remember anything but, a flash in and out. They looked at everything, they thought I had ms. After many hospital stays and getting to the point where I litterly could not walk. I can not begin to list all of my symptoms. My doctor had a test ran and they found very high levels of coxsakie b1-6. I got it from someone serving me food without washing their hands. I have been to hell and back. I still have post viral syndrome which acts like polio. I have gone from a type a personality to a d. It's awful. The reason I don't remember the first 5 months is because I had an infection on my brain. I am so happy to find ya'll. I no longer feel alone.
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