Relapsed badly at 11 months

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i was managing ok for months nothing great most days very dizzy and faint but could get out of the house for a bit do a walk a few errands . now all of a sudden i am having some of the worst days ever ! im not leaving the house at all ..... any light on how why this happens and if its happened to you

i did have 3 nights out in february nothing crazy home by 7 or 8 pm.

will this nightmare ever be over ?

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22 Replies

  • Posted

    I had the same thoughts when will i get better and all of a sudden i am feeling a lot better. I am not sure what reason or why but i do feel closer to my old self at this moment. I am sure you will have it coming to you too. I finally said i have mono and i have to move forward and then click i felt better somehow. God is mysterious in his ways i guess. Maybe i will continue to move forward.

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    • Posted

      Great to hear Josh you that you are seeing some improvements, hoping very much that this can be the start of you entering into a fully recovery and anointing. Hang in there and continue just to take things a day at a time, you will get there I truly believe.


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  • Posted

    Everyone I know that has had this goes through some sort of relapse for at least the first year. I am 10 months today from diagnosis. I have had it a couple of weeks longer but I use that as my monoversary. I am in a relapse now. I have had many. They get less severe the longer I go. This one sucks. But compared to some I have had.....I am actually grateful. I am about 4 days in to this one and can still totally function. I am having the sleep issues. Vibrating upon waking (somedays before this I use to vibrate all day and have tremors). I am having digestive issues but they aren't keeping me from eating (YAY!!!) Higher than normal heart rate etc etc. This virus is a roller coaster. Hopefully if you are having a relapse it won't be long lived or severe. Finger crossed for you!

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    • Posted

      Totally agree Wendi, these kind of relapses can often happen during recovery, and they do become less severe, less intense, less long-lasting and less often as time goes on, until they no longer happen at all.

      Very much hoping for improvement and progress for your Wendi, I know you've been through so much and thanks for your words of encouragement for everyone. Thinking of you still - hang in there, better times are ahead.


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    • Posted

      Hi Wendi, Lori,

      I am sorry you are suffering with this awful virus for so long... it seems that maybe we are in the same boat, as I have been suffering with my mystery symptoms since March 2018, 12 months now. I was so healthy and happy before this and overnight I woke up with an internal tremor thinking I was dying.... it came with a page full of symptoms. The best part is I still dont have a diagnosis , no doctor thought of testing me for ebv and most of them put it down to hormones and I lost so much time thinking this was perimenopause.

      Wendi, I have the vibrating too, its awful. Ive had it every single day since this torture started and yes I wake up with it, the first 6 months I think I had it all day.... has any doctor told you what it is?? I would appreciate it if you could share your story .... you can pm me...

      This week I will hopefully know if this was indeed ebv and let you know ...

      Sending you my wishes for a fast recovery.

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  • Posted

    hi Lori

    sorry youre struggling

    i hope things calm down for you soon

    i am approaching 7months

    and the last 6 weeks up down

    now last two weeks

    im weaker and sicker

    i had to force myself to Dr today/and get 5 viles of blood drawn

    theyre checking for vitamin defencuencues

    at this point

    my body is drained and i may be lacking adding to my weakness?

    anemia ive heard is common among this-

    have you had bloodwork done?

    just to make sure all is healthy and you know its just the virus

    my body feels so drained depleted

    hard to eat again


    ten fold!

    daily it changes

    weakness walking

    weakness all over

    struggling badly

    making me think this is going in a strange direction

    things that were semi easy before

    are harder now

    im wondering myself about why relapses happen why its worse like in the beginning

    i also have been getting cold hands/legs/feet


    muscles weakness all over

    not sure where this is going........

    hopefully you can get on track as well as myself

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    • Posted

      yes all blood work was good and i had to ask for ebv test .

      yes ive had a few of the worst days of this ..this past week . absolute hell.

      im sick and tired of being sick and tired.

      im at 11 months please God i need a miracle .and yes there are so many symptoms im sure its pages !

      hang in there !!

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    • Posted

      Take it as encouraging Lori that the blood work has been good - I know that can be frustrating in a strange way, not because you want it to show anything up but you just want an explanation as to why you've been feeling as you have been. I had lots of clear blood tests during recovery from mono even when I was still feeling quite unwell. It can be very normal during mono.

      Just hoping so much that things become much more stable and settled soon Lori. I believe that YES there will be an end to this nightmare for you, and that God is going to make sure of that and bring you into a better, more peaceful and healthy phase of your life. Hang in there Lori, thinking about you today and standing in agreement with your prayers for recovery.


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    • Posted

      ok good

      thank u

      its hard to track

      you have no clue what your body is up too!

      well patience is a tough pill to swallow i have a life to live!

      agree ; sick of being sick

      this thing is diabolical -:-|

      i swear its not bi-polar, its tri-polar

      this -that -here and there

      no wonder we cant chill and heal

      this thing keeps us on edge!

      glad your bloodwork is good

      ive gotten two EPV tests too-

      the last one a few months ago, first on in Nov'18

      and the numbers; SAME?! no change ,only the most recent one was a little higher actually-:-(


      i am getting to rock bottom here

      i want to feel healthy and normal and not be worried about what may happen or whats brewing;


      i dont do sick well!!!!*

      39 years

      never been sick really ever__

      then 39 years of sickness-all at ONCE!

      GOD can hook us up

      HE will heal us-nature has to do its thing though i guess....

      watch pot never boils~

      hope your days are better

      rest rest &resty rest


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  • Posted

    I am sorry to hear you are struggling so much. While I certainly don't anyone else to feel bad, it is comforting to know their are others experiencing similar symptoms in this awful situation. Next week I will hit my 18 month mark of Mono onset. There are definitely so many ups and downs. I am currently coming out of a flare-up (I hope). As each month passes, it does seem to be improving. Slowly, but surely. The first few months, even brushing my teeth sounded like a huge task. Now, I can do that (among many other things) without even thinking twice. I believe we will all get there. We just have to hang on when the times are miserable.

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    • Posted

      Ugh, there were many mistakes in my last post. My brain has been mush the last couple of weeks! I can't wait to be done with the brain fog.

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    • Posted

      Hi Kris,

      I do empathise, 18 months of this or any tough time is draining to go through. It's frustrating when progress is very slow at times. Just want to encourage and reassure you that it can happen with this thing that seem to get 'stuck' at the same of very similar tough level for many many months with little progress, and then all of a sudden a big change or step forward can happen in a short space of time. There is lots that seems to suggest this is something that can be common with this virus - so don't lose hope and hoping and praying for a big step forward and breakthrough for you over the coming period Kris - hang in there. There is hope and this thing does get better, truly it does even though it seems to go on and on and on unfortunately at the time.


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  • Posted

    Hi Lori,

    This happened to me also at about 9 months, it passed by after a few weeks and it has been recovery mode since then.

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