Zig Zag healing process.....

Edited , 12 users are following.

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)

-:-(

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  • Posted

    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.

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    • Posted

      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 😦

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    • Posted

      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.

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  • Posted

    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.

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    • Posted

      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

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    • Posted

      hi Craig! It’s good to hear from you. Thank you for the tip I will definitely check out this website! I just started back on an antiviral and I’m going to stay on it for six months this time. I only ever stayed on it for a month and a half so hoping that it will get these viruses to stop replicating which can give my immune system a chance to get on top of them. I had a pretty decent August and then took my daughter school shopping for five hours and unfortunately my body wasn’t ready for that. Currently experiencing a crash. Its so hard not to do the things we want to do. Simple things that I totally took for granted before.

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    • Posted

      So sorry to hear you're going through a crash again Lisa, it is so frustrating I can only imagine. Just want you to know I'm thinking about you. I've been going through a really tough time myself with hip pain and different therapists / doctors telling me different things and it's confused and worried me some of the things they are saying, been feeling so down about things Lisa I just pray that God will come and release us from our pain and suffering and for better and brighter days ahead, I do believe there is hope for healing because of God, it's so hard when feeling this way though I truly understand.

      I totally get it too about the things we take for granted, I'm the same too with just basic functioning and walking pain free and things, just praying for the Lord has mercy and restores us in all the blessings He has given us that we have taken for granted in the past and that we can give Him the glory for returning them to us.

      Hang in there Lisa, sending hugs and best wishes,

      Craig

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  • Posted

    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 .....

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    • Posted

      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

      • its tiring tracking this

      prayers to u!

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  • Posted

    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

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    • Posted

      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

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  • Posted

    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 .

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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.

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    • Posted

      I can only imagine what you're been going through Brent, been keeping you in my prayers. I've been struggling too with hip pain and some real worries / anxieties over it lately too, been finding it hard to cope at times. Would be so grateful for your prayers too, you have been such a great support to me. Thinking about you Brent, still trusting in God for our healing.

      Craig

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