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EBV? Don’t know please help

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vancityraincity
vancityraincity

Hi guys,

Here is my story of what I think is EBV.  My hope is that someone can confirm if these are typical symptoms or offer what helped them recover.

On November 10, 2017 I was at work when I suddenly felt weak and hot and wobbly. My coworkers said I was pale as a ghost. I left work soon after and drove to my doctor. During my drive I got so fatigued that I was worried I would crash.. went to my doctor 2 hours earlier than my appt because I thought I was going to collapse. She diagnosed me with asthma (false.. never had it and the inhaler did nothing). 

The first week my symptoms were:

-extreme fatigue and weakness 

(Felt like I would collapse or die) 

-nausea 

-no appetite 

-extreme chills but no fever 

-strange sudden onset of morning anxiety. I would wake up with my heart pounding and an unexplainable fear and feeling of impending doom.

- strongest sense of smell and taste everything would make me feel nauseous couldn’t stomach any food first week. 

For the last few weeks, the following symptoms have come and gone:

-fatigue (comes in waves .. sometimes it’s less and sometimes it leaves me bed bound) 

-joint pain

-abdominal pain 

-weird sudden neck pains 

-persistent mild sore throat 

-back pain 

-shortness of breath 

-chest pain

-headaches (mild) 

-sensitive eyes to light 

-brain fog 

-nausea and lack of appetite (less often now but still occurs) 

-anxiety (from feeling trapped st home and sick for so long) 

I’ve had Abdominal ultrasound, chest x rays, EKG (ECG? Not sure which one is the correct one lol. For the heart), CT scan.. tons of blood work.. I should be a healthy person according to all my medical investigation. I feel terribly ill, nothing like I’ve ever experienced before. 

My monospot was negative. EBV was positive for IGG, indicating a past or recent infection. All other EBV antibodies were negative. My doctors isn’t sure what to think of the blood panel. 

Please advice, share your stories smile 

0 likes, 43 replies

43 Replies

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  • vancityraincity
    vancityraincity

    Posted

    Hey guys, I’ve been having sharp neck pains and sharp ear pain that comes and goes throughout the day.. is this normal? Also still fatigued and joint pain. 

    Hope you’re having a good start to your new year everyone. 

    • KS2017
      KS2017 vancityraincity

      Posted

      Hi, yes I've noticed a sharp ear pain twice in my left ear and a weird tongue pain at the same time actually... I'm at five months now and the ear pain was around four months I think. Wishing you a speedy and restful recovery!

    • craig07920
      craig07920 vancityraincity

      Posted

      Hi Van,

      So sorry to hear you've having these pains, it's awful I know. I had lots of strange and weird pains all over my body and joints during the virus, I think this is quite common and just to reassure that it passes over, the virus just seems to go through these phases unfortunately. Hang in there and remember you will get better.

      Craig

    • isabelle54481
      isabelle54481 vancityraincity

      Posted

      Yes, I have that. It is a pain that starts behind my jaw/below my ear and shoots/radiates into my ear, along my jaw, and down neck. I also get a similar pain around my eye on the same side. I also get tingling with the pain. I have had these symptoms (and more) for nearly 6 months now. Have your ear and neck pain gone away since you posted?
  • gigi15k
    gigi15k vancityraincity

    Posted

    Hi - I'm a healthy 65 year old female recently diagnosed with EBV.  I'd never heard of it, never had mono, started in January with really bad chest congestion, cough, and sore throat.  I kept returning to the Dr. with the same symptoms - they suggested Mucsinex, Flonase, Claratin...nothing helped.  At the end of February, I went to the Dr. again with the same symptoms, plus headaches and mentioned fatigue.  That word triggered the EBV blood tests and confirmed the diagnosis.  I have not had a fever, nor swollen glands.  I started having a metallic taste in my mouth, now my eyes are itchy and burning.  2 weeks ago, my doctor ordered EKG, Chest Xray, Breathing test, a slew of blood work and urine analysis - results show no abnormalities. 

    My conclusion 3 months into this is that we all experience this in different ways.  Since there is no medical treatment, I've started using Oregano Oil which has anti-viral properties, as well as a ton of other benefits.  I figure it can't hurt.  I have good days and bad.  The lung pain has lessened, as has the weird taste/tongue sensations.  The headache always seems to be present, as well as the sore throat.

    Anything suggestions or experiences anyone can offer are appreciated.

    • vancityraincity
      vancityraincity gigi15k

      Posted

      Hi Gigi

      Sorry you’re going through this misery.

      I heard hat oil of oregano helped some, for me it was olive leaf extract that I felt gave me better days. Other than that... Vitamin B and D and C.. most importantly rest. I felt relaxed after acupuncture and Chinese cupping but this lasted like 3 days. 

      I feel very angry at the medical profession that they spend time researching the perfect breast implant and other useless and vain stuff but can’t help people suffering with this ****. 

    • craig07920
      craig07920 gigi15k

      Posted

      Hey Gigi,

      So sorry to hear you've been struggling with EBV, really hoping things settle soon hang in there this can be very normal and for me it took a number of months but I got there eventually thanks to God. Things that helped me included taking a good strong multi-vitamin per day (I use immunace here in the UK), high doses of Vitamin C per day (1000mg-3000mg), B complex / co-enzyme Q10 (great for energy and settling the nervous system which goes into overdrive with this) and immune boosting herbs like siberian ginseng and echinicea. Oregano oil as you say is a great one too.

      Hang in there and just take things one day at a time - thinking of you and remember you WILL recover from this, even though it's so hard when in the midst of it going on for so long.

      Craig

    • rhonda21886
      rhonda21886 gigi15k

      Posted

      Hi Gigi you mentioned a symptom that I had forgotten about. I have had so many! The metallic taste in your mouth. I also had that.

      I Will be 65 in April . I'm now 19 months in. Much better but not 100%.

      I took all sorts of herbs, vitamins, essential oils recommended by a Naturopathy. I really don't believe any of them helped me! But how can anyone of us be sure.

      I have learned a little more recently that makes sense to me. As I looked back I realize that I did a lot of things that slowed my healing process.

      During the first signs of fatigue I should have known that my body was calling for rest. My husband and I thought I just needed to exercise more and my energy would get better so I pushed till I completely crashed. Then I went to doctor for blood work and learned I had EBV. She was really no help other than knowing what I had. No instructions on how to manage or facilitate the recovery process other than, oils, vitamins, & herbs. I learned the hard way that many of these cause dehydration which EBV already makes us more prone to dehydration.

      If I had it all to do over I'd do it different who knows if I'd have better results and I hope I never need to do it again!

      The first phase I'd completely rest and try to get my nutrition from food and fresh juices only.

      The second phase when I felt wired but tired I'd focus on calming myself in many ways.

      I'm now in the last phase. This one is the better of the 3 by far but it is still trying. It is sure a balancing act which I'm not real good at. My body and emotions are returning back to normal in many ways but I still have to take my thoughts captive and not allow a place for unwanted guest of anxiety , fear and doubt to dwell! I also have to listen to my body when it gives me instructions to stop, rest, eat, drink and take care of it before and above anything else. Other things will just have to wait. Pushing my body instead of listening to it has brought me on this long tough journey so I'm now a better listener. I'm grateful for God's mercy and Grace that has accompanied me every step of the way!

      Prayers Rhonda

    • craig07920
      craig07920 rhonda21886

      Posted

      Hi Rhonda,

      It's so good to see you post, reading your message just reminds me what a tough tough time you have been through. Definitely things will still get better for you from here, I totally believe that as you say this is the last phase and your body is finally getting on top of this thing and kicking it into touch!

      'Your faith has made you well', I do believe that Rhonda and God knows how trusting and faithful you have been even during this difficult time. You've helped me a lot too and I'm very grateful for that. With Easter coming up, there is real hope because when Jesus died and rose again that gave us all hope for our healing and forgiveness.

      Thinking of you and you continue to be in my thoughts often.

      Craig

    • Mono_too
      Mono_too rhonda21886

      Posted

      Hi Rhonda,

      I am so glad you are starting to turn the corner. I am very grateful for all the support that you provided when I was so sick. 

    • rhonda21886
      rhonda21886 Mono_too

      Posted

      Hi Mono, you have been a great encouragement to me and many others on this forum. I think of you so often and wonder how you are. I also think of your Daughter who has has such a long difficult path to recovery!

      Thank You! Are you fully 100%?

      Rhonda

    • Mono_too
      Mono_too rhonda21886

      Posted

      Hi Rhonda,

      I feel a lot better, pretty close to 100%, I still have to be careful not to get overly tired. My daughter is still struggling but feels a little bit better, she is at 16 months. 

    • craig07920
      craig07920 Mono_too

      Posted

      Hi Mono,

      So pleased to hear things have been much more stable for you lately, yes key just to remember to pace yourself in this first year or so especially after the virus thata's really important. Thinking about you and your daughter, just praying this horrible virus leaves your family for good - it won't win and your daughter will overcome this too - hang in there.

      Craig

    • 40with.gf.
      40with.gf. Mono_too

      Posted

      Hi mono,

      it really reassures me to hear how well your doing, I am so pleased for you and I'm glad your daughter is still improving. I, like you, am nearly there but still have to be careful and I can feel the symptoms come back occasionally.  But compared to last year it's great to be this good. But it still frustrates me that I'm still not quite there.

      are you back at work? I might start back in April. 😬 Just phased return, I'm only part time anyway, see how I go?! 

      Caroline x

       

    • craig07920
      craig07920 40with.gf.

      Posted

      That would be an amazing achievement if you could start back work in April, phased return definitely the best way. I've still had to be off because of my back unfortunately, really hoping I can get to that stage of returning to work too as it's getting me down sad

      Craig

    • 40with.gf.
      40with.gf. craig07920

      Posted

      Oh Craig, that is really awful to hear...I'm so sorry your back is still giving you grief. It is so miserable.... When you're ill you only see all the fit and healthy people too springing around enjoying life. That will be us soon one day!

      well Craig, if work is too much or takes too much out of me I shall just have to give it up...I don't want to ruin how far I have come

      x

    • craig07920
      craig07920 40with.gf.

      Posted

      I know thanks Caroline, your kind words mean a lot. I hope we can all be fit and well again soon!!! You're right in prioritising your health over work, that's what I've had to do just now as well - it's not an easy thing to do I know, but still believing in God that we will get there.

      Craig

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