hi guys,
I am confused, I have yet to have a symptom free day and just passed 1 yr. I’ve had moments where I’ll feel “good” or hours but not days? Some symptoms have stuck the whole way through while others, come/go- then old ones have looped back. Does it end? I feel stuck. A few weeks ago I actually thought I was turning a corner, then I fell back. I’m so tired of this game- would like my life back in full swing again!! I’ve paid my dues-
So very frustrated of not feeling 100% or even 60% at this stage!
does this end? really? or what? everyone is so different its tough not to be fearful of the long term? chronic this-that~ ughhhhh
i read people feeling good for days then relapsing? why am i not symptom free yet? its confusing to me
??
i wish that this was consistent it would be less traumatic.
I pray for everyone on this forum* every night!
i need to recover already F•••!
I want to go to Congress and have the US pass a bill for funding to the CDC to research a cure for this Bulls••• virus
What crap this is…
im over this
any experience or advice is much appreciated…
how does one keep their moral up during this? the zig zag process makes it seem impossible…
Craig i hope you are well sorry ive been off line a bit!..
thanks guys (sorry im venting and ranting_ just over this)
-
Hi Starr,
I am about 8 months in (although I think it may have started up even before that) and I still have random symptoms and days where I feel “off.” Sometimes I am randomly dizzy/lightheaded, I still get random rashes/hives on my arms, random bouts of frequent urination and fatigue. Two months ago I randomly had horrible joint pain again and kept getting hot flashes/facial flushing. It’s so hard to feel like you are recovering when random symptoms linger or pop up. I never had any issues with my skin until this past month. It seems to have made every body system extremely sensitive, especially in the week leading up to my period.
I have been doing a lot of reading about EBV and have seen that it can take 18 months for the body to get it under control. I have also read a lot of blogs from women who seem to consistently wrestle with this virus acting up. I had mono 16 years ago in college with totally different symptoms and was better in a month-maybe two months. I actually don’t know if I technically have mono again now, just that I have active EBV. Luckily, this time it hasn’t left me bed ridden other than random bouts of extreme fatigue that would come on like a wave in the beginning.
hey Starr. I hit two years last month. It is a total long game. Mentally it’s exhausting and I totally understand what you’re going through. I still get better and then relapse. I will say that I am 25% better than year one. Not a ton of progress but some! I just found out that I have really high antibodies to shingles! So that’s three herpesviruses, EBV shingles and herpes 6, that are wreaking havoc in my system. I’m going to go on an antiviral for 5 to 6 months. Hoping that can get a handle on all of this. I also found out that I was really low in ferritin so I started on iron pills and that’s helped. Thinking of you! Hang in there! The only thing that helped me was to keep testing to try and find the root of the problem. I refused to accept to just wait it out.
Hello StarrA , I didn’t get any better at the one year mark too as a matter of fact i was getting a little worse . My EBV blood count was a bit higher at a year , had elevated white blood cell count too . You are so right about how this virus works . I have never had a completely symptom free day in 19 months . I now have day and weeks where i feel about 80% but some of the symptoms linger . I spent a ton of money on Ozone therapy and thats the only thing that has helped me . Good luck to you and best wishes , this virus is hell on earth and most doctors don’t understand it …
Oh Starr,
I wish there was an easy answer to all your questions, why this goes on so long and how to keep up your spirits and moral when something goes on so long. I’m having the same trouble too with issues myself things going on for a while and trying to keep moral up and hanging in there. Sometimes it feels so impossibly hard, sometimes we don’t know why and just have to hold onto our faith that God understands and knows why even when we don’t, and that He’s a kind and loving God and wants us well, I do believe that.
You have nothing to be sorry for venting, I remember all the emotions of fear, distress, worry, anger at different times that I went through with the virus too, and I know everyone on the forum can relate to these feelings when dealing with this virus.
Starr I know it’s hard to believe it when you can’t see any change, it’s hard when people keep telling you ‘it will be okay with time’. Just focus on the present day is what I found helped with recovery, it’s so hard to not focus on that desperation for things to be better, but remember God is in control of the bigger picture and our job is just to try and manage as best we can given the circumstances each day - much easier said than done I know, at least we know God is always with us even when we don’t see or feel it. Thinking about you still, and I for one and still believing that Year 2 is the year of recovery and change for you.
Craig
i I have been around this site for a long time . I was infected in 2016 . I became severely ill January 2017 . it is now 2019 and I still struggle . I am better than what I was before but I am still not 100% . I got infected with ebv, hhv6 , hsv1 and rocky mountain tick fever at the same time . I know that sounds humanly impossible but yes it did happen . I can feel your pain . I also went through a divorce of 19 years of marriage . all of this has caused me to become numb. I have a 16-year-old son . he is the only reason why I keep pushing on . some days are OK some days are terrible . people are always telling me that it could be worse . sometimes I beg to differ . all I can say is keep your faith . maybe one day we all see a better day .
thank u for your info
ive never been sick
this is a first for me in my whole life…?
pretty traumatic
praying for full recovery for all of us…
thank u for your info…
im better too, but things linger
?
confusing to me
some recover
others dont
who will i be?
praying for all on this forum!
thank u
good luck to you too!
strange this whole thing
what are your symptoms that linger?
mine;
-head stuff/off kilter (3mos off on new issue due to mistake i made hanging of F•••••• inversion table never gad head stuff before that)
-muscle weakness/jelly legs
aches pain tense muscles tire quickly at times
-tired but sleep good mostly
-tired off on -
who knows low back pain
prayers to u!
thank u Craig
sorry for your issues
this sucks
but i keep going
i want my life health back
i pray & pray
healing to u!
do u feel improvements at all?
so sorry
yea its been brutal
things improve change come back linger?
im confused…
hard to master this thing
im strong too!
press on
prayers to u
symptoms:
off kilter at times
stuffed head
jelly achy tense legs
low back pain
tire out
sleep good
groggy in am
but its changing usually
persistant symptoms have been leg issues and low back?
i eat beyond healthy!!!
never been sick
vegetarian
raw juice…
ugh
this thing is hard
some recover
others dont
who am i?..
scary
i dont scare easily
So pleased to see a post from you Brent, and so sorry that you have still been struggling. To get hit with all those horrible conditions at once is just so hard to comprehend, I and most folks on here know what it’s like to get hit with one awful thing in mono but to deal with all those things at once as well as the personal issues you were dealing with, Brent you’ve shown so much strength and courage to get this far. I still believe that God has an end to all this ahead in the not so distant future, I really do. A great message from you for us to keep our faith, I have been struggling with some pain issues too lately and finding it hard. Let’s keep trusting God, He’s our true and only hope.
I always remember how supportive and kind you have been to me Brent, please be assured that meant and continues to mean a lot, and I am still keeping you in my prayers even when not messaging.
Craig
Thanks Starr, there is healing there for you I truly believe that and I’m grateful for your prayers for me too, it means so much - you are a marvellous friend! Praying for you too - God is good!
Craig
you have been a great supporter of hope for all of us . thank you for your prayers. i believe God has a plan for you and all of us.
Thanks Brent, I really appreciate those words they give me hope and comfort - I believe that too, and that God has an amazing plan ahead for you which involves victory and overcoming these awful times you’ve been through - you’re not on your own.
Craig
Hi Olivia,
I am comforted in knowing that I am not the only one who gets some sort of rash still. Apologies if this is intrusive, but what does yours look like? Your story sounds identical to mine 
Hi Brittney,
It looks like a small heat rash really. I seem to only get it on my forearms. And the strange thing is, he does not happen when I lay out in the sun. It happens sometimes when I am wearing a sweater or have something hanging from my arm-like when I carry a bunch of grocery bags in. I also will sometimes feel a weird burning sensation and then a little hive will appear.
Hi Lisa,
It is good to see a post from you, I still been thinking about you and hoping and praying that there can be a real breakthrough in your situation soon. It’s so hard to keep strong and positive when things go on so long I know, wish we could understand such trials better, just need to keep trusting God knowing that He knows better than us and is a good God with a good plan for our future, I know it’s not always easy to comprehend that in the difficult times, but it is true I really believe.
A friend told me about a man Phillip Day who gives good lifestyle and vitamins tips and advice, I attended an event run by him recently and was really impressed and got a lot of good tips about vitamins that I hadn’t had before, and that’s from someone that’s been taking a lot of vitamin supplements for some time. His website is www.credence.org, it’s worth a look and I know he says he responds personally to emails very quickly.
Craig
i have improved in some ways. my sleep has improved some. i get 4 to 5 hours a night now. my vision is starting to improve some. (blurry vision and sensitivity to light). low grade fever has finally went away. my body’s defense system is still weak. i get tired very easy. i couldn’t properly rest because of work and taking care of a child.
Hi Star i totally get where you are coming from,i am 2 years and 2 months into this dreadfull virus and am floored again with it now,this must be the 6 th relapse ive had with it since it started,im back in bed with all the same symptoms as before,severe headache,fatigue,weakness,dizzy,no appetite,aches etc etc ..i really thought it had gone for good after having a few good months,but i just cant seem to get back to what i was like before the virus,i also have ME/CFS to contend with too which dosent help,but i can cope with that,its this damned virus,its so brutal…