The people that had mono relapses, did you have blood work done? If so was your EBV VIRAL CAPSID AG (VCA) AB (IGM) positive?
My EBV VIRAL CAPSID AG (VCA) AB (IGG) and EBV NUCLEAR AG (EBNA) AB (IGG) are higher now (July) and they were in January.
Since my IGM isn't positive my doctor doesn't think is a reactivation.
I feel exactly like I felt during the first time I had mono. Now I am worried that something else might be wrong with me.
Thought?
Hi don,
My IGg titers are also higher than January. In late May everything came crashing down for me and all my old progress is lost. It’s like I never even made the progress I had before.
After late May June, July, and August just keep getting worse! At first I thought it was just a normal setback but now I feel way worse than I ever have and just keep getting worse. I’m so worried I have CFS.
So far my doctor can’t find any deficiencies or anything in blood tests.
Hopefully your setback settles soon. It is super normal for mono to have setbacks though, but mine is crazy I am so worried it’s more than just a setback!
Sorry to hear that. Luckily I don't feel worse than I did but i feel like I did during my original infection. I pray we all get well soon.
Hi Don,ive had EBV for 14 months now,the first blood test back then showed EBV Detected,iv ehad 4 bad relapses since then and have been as ill as the first time with each one,currently in bed now ill again with the 4th,ive had 2 lots of bloods done since the first but doctor hasn't tested for ebv again,said it was pointless as its probably that making me ill anyway and even if it shows again theres still nothing they can do or give me,im in the UK by the way,it is so soul destroying to be this ill yet again when it tok so long to recover from the last relapse in March,i really thought I was over the worst of it but its reared its ugly head again,my body just cannot take any more of this,is there anyone else out there the same as me,i also have ME/0CFS to contend with aswell
Hi all,
Can’t help much with the blood test question as in Canada, we don’t actually see our numbers, it just says positive or negative. My IGM was always negative but IGG and EBNA showed positive.
Youngboy, because the doctors couldn’t for sure say it was a current or recent mono infection, they shrugged their shoulders and diagnosed with post viral fatigue (one mentioned the possibility of CFS).
FEAR NOT. I went from bed bound and having to leave work for 5 months, to being back at work and travelling and shopping and living a relatively normal life. I notice my symptoms mildly flare up when I am very stressed or if I really have a crazy day. But I want to tell you that I had awful relapses and all symptoms point to mono. Don’t be worried about CFS - these viruses are crazy and it might take months to get out of a relapse but you will. My only advice is to try and relax so our body is able to fight the virus.. our immune systems are suppressed when we are under stress. I believe that’s why when I get stressed, I feel a little unwell.
What was your timeline of recovery? Did you have any relapses?
Well I started feeling “off” in September.. I remember going on a walk and being feverish and exhausted and out of breath but I just thought I had a flu. I was sick for most of
September, October.. constantly flu like feeling but I just thought it was bad luck and kept on with my life taking a sick day here and there. I believe this is why my IGM was negative because I didn’t test for it until DECEMBER!
November I crashed at work. Became so weak and wobbly. For a few weeks I was too weak to make myself easy food like a sandwich. That was my first big crash I think, it lasted about a month.
Sloooooow marginal improvement (still house bound and weak but at least I can feed myself now and do small tasks like fold laundry, make easy dinner occasionally).
Crashed HARD January was in emergency for several days as I was unbelievably weak, no appetite, night sweats, difficulty breathing. The weakness was the worst, there were some nights I was scared to fall asleep because I couldn’t imagine my body having the strength to wake up! Awful time..
From January slow improvement, still not working. House bound half the time, but now my energy and strength is sloooooooowly improving I can do a quick grocery run. Then rest. Dust the bedrooms. Then rest. Days were up and down with symptoms like night sweats and sore throat, anxiety and shortness of breath coming and going.
Recovery seemed to pick up in April, from there I noticed a difference that I was doing more. Went back to work 1 day a week for a month, then 2 days for another month, then 3. I will be resuming full time, but I expect to take it easy after work as I am STILL recovering (right now I feel 85%).
Sorry for the ramble. I just want to reassure and comfort those of you guys going through it because it was scary to not know what’s happening and it really felt like “it’s been months and I haven’t gotten better so I’ll be like this always!” But you won’t be. You WILL recover.. don’t get too hung up on other people’s timelines. I would read about people recovering after 4 months and if I was further along I would freak out and worry myself. Every body recovers at their own pace, but you WILL!!
Hi Don,
I had one episode about 21 months after my initial diagnosis, and about 9-10 months after I really did start to feel full better again, where I felt unwell again and my blood test showed active for EBV again. It frightened me so much because I was thinking is this me back to the start and having to go through all that again. Thankfully, my fears were unfounded and things settled down again within a few weeks. Doctors always say you can't get mono twice, and whilst it's true, my experience showed that within the first couple of years it is possible to have mini reactivations, which can't harm you anywhere near as bad or for as long as the first time, although when it first comes on it feels just as intense and horrible.
Really hoping this settles down soon Don, sorry I can't help much with the specifics of the blood test results, too much for my non-medical brain to cope with! But still believing things are going to settle and get better for you - trusting God with that. Hang in there and thinking of you.
Craig
Hi van,
Thank you for that lovely message. Good to hear that you are almost fully better.
I’m so worried, as I crashed in late May and since just getting worse and worse, I feel worse than I ever have. That’s why I am so worried about CFS.
3 months so far of the crash and only decline.
It just feels so chronic and feels like there is no end or any chance in improvement.
I felt about 70% around middle of May, and then crashed, and over the months just keep getting worse and worse.
This sounds like what I have been going through. I didn't get diagnosed with mono until 2 months (January) after I was sick so my IGM was negative . I was recovering pretty well until this relapse hit me 3 weeks. ago. I had my doctor draw more blood but the IGM is still negative so I guess technically this is not a true relapse. I guess it's more of the up and downs of the original infection.
Hey, please don’t worry about CFS. Yes 3 months is long to be down in a crash but I really believe you will get better, it’s just a guessing game (sorry) of when. But it’s not permanent, your current state. I strongly recommend working on mental health (I was so stressed out About CFS and my health and I think this prolonged my crashes). Meditate, take a nice bath, watch funny movies, have a friend over who makes you laugh and isn’t too needy in terms of hosting.
Also may I remind you that doctors don’t really know what CFS is. I read theories that it might be viral even and that it’s just a virus that we don’t have tests for yet! So that is why instead of thinking of CFS as permanent and doomsday, I had to think of it as no, this is a virus LIKE mono or it is the mono. My neighbour took years to regain his strength after he caught mono as an adult. And with him, doctors didn’t catch the acute phase either he just tested + for past infection. But he was very sick, and nobody knew what was wrong with him. He said it was the worst, but he did get better he even said at 60 now he’s the best he ever felt. (It didn’t take him 60 years lol, but you know what I’m saying... your future is not over!)
Hi just a word about ME/CFS,i already have that and have had that for 15 years but out of the 2,glandular fever or CFS I would rather have the latter,i got glandular fever 14 months ago and have been so terribly ill,i could cope with my ME/CFS but I cant cope with this,wishing us all better days ahead …..
Thanks Craig. You really help everyone on this board with your positive outlook and your success story. All of us that are going through the slow healing process really need those success stories. Once I kick this thing for good I'm coming back here to offer hope to others. Like i have said before. Trust God in the Good Times and the Bad. He will get you through to the other side.
Hi Van,
Thanks for the great words man I really appreciate it. Yeah I am very stressed out about CFS too. I’m so worried that the way things are going right now that’s what its becoming though, For the past three months It’s only been getting worse and I feel worse than I ever have so far so it really worries me.
Thanks for the encouragement van, I really hope that you fully get better soon, and I’m trusting that you will.
Youngboy
Hi Young Boy / Van / Don / Diane,
Still reading your messages.....Young Boy definiitely agreeing with Van regarding CFS. One absolute critical difference that I think isn't picked up enough on by doctors is the difference between CFS and post viral syndrome. What the vast vast majority of people with mono go through in the horrible months and months after the initial period of mono is post viral - which is your body taking extended time to recover from and get over a really horrible virus. This is normal with mono and many doctors try to write it off as the same thing as CFS - it very much isn't - post viral is a horrible thing to go through, it can take extended time in terms of months, but it does get better - it really does - it is just a time factor with it and i know it's hard to be keep hoping and not to let your mind think other things.
Really good to hear that you are seeing some improvement Van, definitely encouraging for everyone on here and hoping things continue to go in the right direction!
Thanks so much Don for the lovely and kind and supportive words. The forum has helped me too with my own current issues, and I'm grateful for everyone's kind words and support for me too! What you said about trusting God and that He will get me through means so much, thank you! I truly believe that God will get you through your situation Don, absolutely I believe it in Jesus' name. Yes let's keep trusting in Him today - He still has amazing plans for your life so hang in there!
Diane, continuing to think about you and pray for you each day, you continue to be a source of great help and strength to others on the site despite the awful time you have been going through. Still believing God is going to intervene and give you the victory over this situation.
Craig