Please Help

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  • Posted

    there are many other viruses in the herpes family ... have you been tested for all of them ? i only got disgnosed 5 months in after my own research . even a visit to the er showed everything normal .

    keep pressing your drs for more tests !

  • Posted

    My daughter never tested positive for mono, but she was positive for EBV, it is a very hard virus to deal with thats for sure, her friend had lyme disease and the symptoms were very similar.

    • Posted

      Mono, what are the differences between Lyme and mono that you can recall?

      Lisa, for EBV, the window for testing positive is very small for most people. The antibody test shows 4 tiers and two of the tiers are for a recent infection (last 4-6 weeks). From my research both Lyme and Mono are both very hard to detect.

      For Lyme, the test done by most medical insurance is Western Blot, which is horribly inaccurate.

      From my research, both EBV and Lyme can be dormant in the body until stress activates. EBV and/or Lyme can activate 1st causing an activation of the other. Essentially getting infected by both at the same time. Both have links to other autoimmunity diseases such as MS. Both have similar healing tactics such as diet. Both cause very similar body aches, anxiety and fatigue.

      I had the severe sore throat that resembled strep, and mirrored so many other symptoms from this and other forums. I have a doctors appt on Monday and I will ask to take the Western Blot test (its free, why not). Also, I want to take the antibodies test again and see if my EBNA and the other IGG number went down. I tested too late for the early activation, but my ENT aknowledged my numbers were pretty high (like a vaccine he said).

      I am almost 8 months in, and feel about 65%. I feel SLIGHLTY better but still have a ways to go. Whatever you have, focus on rebuilding your immunity ie diet and rest That can only help you.

      Good Luck

    • Posted

      Hi Bo,

      I'm hoping so much that you can get a real breakthrough with things soon, I remember myself when going through mono that 8 months was a real low period for me because I still felt a long way off being fully well again and had a bout of joint pain and bruising around that point and I was just so fed up and down all I could do was ask God for help.

      I really felt a change and turn around start to happen around 10 months if I remember rightly Bo, thanks to God only, things started to pick up and started to feel like myself again - it did still take a little bit of time to fully get to full recovery, but really life was so much easier again and was just so grateful for the symptoms to be son intense daily and felt I could live a much more normal life again.

      So really just want to encourage you Bo to hang in there, remind you that it can (unfortunately) be very normal for mono / symptoms of EBV to go on for as long as you have been going through it and then to see real change and full recovery happen - I've read a lot of stories on the site of people that have a real 'moving' phase between 9-15 months where things started to get much better for them. And also with mono it can be the case too that it can feel like it's staying at the same level for months and months and then a big step forward can come in a short space of time - I felt that kind of things happen so don't lose heart or hope if it seems like progress has been slow or stagnating at times to now - there is hope and recovery ahead Bo I truly believe that given my own experience and reading the recovery stories of many others who had such a tough experience with this for a similar length of time.

      Hang in there and thinking of you, and good luck with the test you were thinking of getting - hoping it can offer some real hope and reassurance and help towards recovery. And remember you WILL get through this and get better - hang in there trusting God with that.


    • Posted

      Thank you Craig,

      Im starting to doubt everything, and im going down the rabbit hole of other possibilities. I was so certain I had EBV untill a friend of mine told me of Lyme, and our symptoms were so aligned. I think I have added stress to myself when I thought I was on a good path. Now I am experiencing a burning sensation behind my eyes that is really worrying me.

      I think the biggest thing is I am not getting any better. Maybe my joint pain has subsided, and from the research I have done, Lyme causes a lot of joint pain and nuerological symptoms. Plus it was my sons 1st birthday last week and planning his party and such was abnormally stressful.

      I do have a doctors appointment and I will be requesting a lot of labs so i have hope. Your last post was really helpful. I just thought I would be feeling better than i have been at this point. I even hate to cry because I am afraid my tears are contagious.

      I will be sure to keep you up to date when i get my lab work done. Thanks again Craig

    • Posted

      aww thats so sad ... have a good cry boy have i shed some tears! lyme and ebv have the same symptoms so get a full blood panel so you dont have to keep going back like i did . i had like 6 blood tests before i was duagnosed with ebv

    • Posted

      Hi Bo,

      It really is awful when worries about different illnesses come into your mind and you doubt things, I can only imagine how hard it must be when the diagnosis is not confirmed early on - as you say it's just that short window of time in the first few weeks that the monospot test seems to show positive. But remember what your ENT specialist said Bo, it sounds from what you said there that he felt it was likely that it has been mono, and of course that together with all the symptoms certainly points towards that. I don't know too much about Lyme's Disease, but I hope that they can do a blood test that can rule that out and put your mind at ease with all these.

      It is awful that you have been so unwell for your son's 1st birthday Bo, and the stress of doing any activities like organising a children's party right now I know can heighten everything and be so draining. I do believe you will have lots of happy birthdays ahead for your son where you are fit and well again Bo, I really do believe that.

      After 8 months I was in such a frightened and weary state with this virus, it sounds very similar to where you have been Bo. But please know that there is hope and there is a turning point with this - my experience was that weird joint pain and bruising and aches in different parts of my body at around the 8 to 9 month mark was actually just before a major change started to happen and things started to feel better - as if it was a final push of my body to get on top of this thing once and for all.

      Hoping and praying for your recovery Bo, you WILL get the breakthrough you need, even if it's still a little bit of time or whatever, God willing you won't have to go through anything like what you've been through this last 8 months again. My experience was the Year 2 was SO much easier than Year 1, was still a little fragile and getting back on my feet again don't get me wrong, but the intensity has gone and it was a year of hope and recovery. This is the worst phase by far you've been through Bo and believing that things are going to get better for you, so hang in there and remember there IS hope and there IS recovery with this thing, even after so many months of feeling at a similar level or not feeling as though you are making much progress (I was EXACTLY the same after 8 months). Be kind to yourself and take things easy (although I know it must be much easier said than done with a young son).


  • Posted

    i feel like we have replied multiple times trying to reassure you that this is typical and these symptoms can happen from a number of viruses and can also be post viral fatigue. i was very sick for 6 months.. you are still early on some people feel ill for up to two years and their blood tests are inconclusive and on paper they are healthy. re-read your previous posts for reassurance and support you have already received.

    • Posted

      aww.... dont be too hard 0n her shes desperate for help and believe you me i know that feeling . this has been the ugliest most horrible frightening thing ive ever been through .... ive cried and begged for help from anybody.

      i didnt get diagnosed until month 5 so not knowing, drs saying youre healthy when you feel terrible the worst .

    • Posted

      I agree Lori, it's very important for us all to be compassionate, supportive and understanding to each other through this illness, no matter what stage we are at. I know for sure how down I was through it and how much regular (daily) encouragement I needed from the people around me. All of us on here know how painful the lowest moments of this virus are and it's important we remember that and support each other at all times if we can. It's a great network and I'm very grateful for finding it.


  • Posted

    Hi Lisa,

    It is totally understandable how you have been feeling, I am thinking about you Lisa as I know that that period of 3-5 months or so was extremely difficult for me when dealing with mono, I felt so down and drained physically and mentally with it having went on so intense every day for that time and just prayed for God's help.

    I'm not too knowledgeable when it comes to different blood tests and things, but the advice from Lori and Mono too definitely sounds wise, perhaps asking if they can check if you have had a past infection for EBV even, I think they can tell that from your blood tests, and also maybe test for CMV too as it's a similar virus which also causes mono illness (although that may be covered in your other mono blood tests, again I'm not speaking with any medical knowledge here just bits of information I've picked over the years).

    I just hope and pray that the doctors can help and do more to help you get a diagnosis Lisa, I will keep you in my thoughts and prayers. Remember there are many people with mono who don't get a diagnosis but then still go on to fully get better, there's been a few people on the site here who didn't get a proper diagnosis until maybe a year or so after infection, it must be so hard I can only imagine.

    Hang in there Lisa, taking good vitamins and herbs still most definitely can help - a good strong multi-vitamin per day especially and a B complex vitamin too, as well as higher doses of Vitamin C (1000mg-3000mg per day) and immune boosting herbs like echinicea, goldenseal, ginseng, oregano.

    I am believing that God is going to get you through this Lisa, He is hearing your prayers and even if the manifestations of recovery can't be seen yet, God I believe is working on it for you right now and trusting that His timing will be perfect (it always is) and that you are going to be well again and come through this awful time. Message any time, especially when feeling down, and remember whether this is mono or something else of a similar nature, you ARE going to get better and get through this, I believe that in my heart.


  • Posted

    Oh I feel you on this bc my mono blood testing was funny so I did a ton of research on it. My monospot was + at like 5 weeks in to being sick. Possibly 6 weeks it's hard to pinpoint exactly when it started. Doc did the ebv panel and checked my organ functions. Ebv panel had - for active current infection bc I was for sure past the 2 to 4 weeks where that shows up. I had a + for the one that from my research (of legit medical research) they now know can mean you have had it in the past or recently and then I didnt have a + for the one that means your in the recovery phase but I read that at least 10% of people never develop that antibody and they also arent sure when it starts showing up if it does, so I maybe was tested at that 5 week mark where the recovery one isnt elevated but the acute early phase one is already gone

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