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share your ebv symptoms

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hi everyone. i have posted quite a bit of discussions but this one will be explaining my mono experience as a whole and if you can relate great, please comment some reassurance or similar symptoms. i’m 19, always in good health, until In october 2017 i got plagued with mono. i had the classic fever, sore throat, achiness, weakness, and fatigue. I thought the nightmare would end but i truly never felt better after that.

my symptoms with chronic ebv have been:

-nerve pain all over body (tingling, shooting pains, jolts)

-back pain

-neck pain and pressure

-sensitive scalp

-ringing in ears

-mouth sores/bleeding painful gums

-on and off sore throat

-sharp pains in lymph nodes

-rib pain

-heaviness in rib/chest area

-to the bone FATIGUE

-dry eyes

-extreme health anxiety

-one bout of mild oral thrush

i have been a hypochondriac since birth. i suffer very bad ocd. i convinced myself this is cancer or hiv (even though i have negative tests). i am BAFFLED how little doctors know about chronic ebv and their is barely any cut and dry info about it online. It’s like a chronic condition only those suffering understand and is very lonely. It’s very easy to let our anxiety wander and make us think this is something more sinister. anyways, please comment your symptoms of chronic ebv. use this forum to vent! i need to read experiences of others.

1 like, 105 replies

105 Replies

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  • jo31926
    jo31926 Guest

    Edited

    Hi everyone

    it's a relief to read your symptoms and see that I'm not alone. I'm older, 44, and I've always been in good health. I've had this disease since March 2020. So it has been 4 months of feeling horrendous. These are the symptoms I've had:

    • headaches
    • eye pain
    • back pain (lower and upper)
    • dry mouth and excessive thirst
    • night sweats
    • bone pain
    • internal tremors
    • mouth sores
    • white tongue
    • tight throat due to swollen lymph nodes
    • chest tightness and cough which comes and goes
    • ringing and fullness in ears
    • extreme tiredness
    • vivid and disturbing dreams
    • bumps on uvula at back of throat
    • sore throat on and off for weeks

    had a full blood count and xray which came back perfect. Just been tested for ebv and i know that's what ive got but also been super paranoid like other people. This has been the biggest nightmare.

    • Gina1114
      Gina1114 jo31926

      Edited

      absolutely not alone im 52 and have struggled about 5 months now and all ur symptoms resinate and this forum has helped me. i continue to struggle with fatigue and the tremors. doctors look at me like im crazy cuz my blood work was perfect. tightness in throat and a cough as well turned out to be an enlarged thyroid which im hoping returns to normal. tis ebv has changed my life . i dont want it anymore lol.

    • nathan04973
      nathan04973 Gina1114

      Edited

      how are people getting on? i had blood tests and came back with a vitamin D deficiency has this been the same for other suffers? doctor thinks i just have post viral fatigue now and am starting to notice abit more energy and my flu like symptoms headaches and brain fog have subsided for now fingers crossed but I still have sore weak muscles/ body tremors and a horribly bloated stomach and sore chest does anyone have any tips for dealing with the bloated stomach should i bring this up with my doctor? thanks everyone

    • Gina1114
      Gina1114 nathan04973

      Posted

      hey nathan,

      and yes i also tested for low vit d levels . started taking vit d 5000 units a day with k2. i also continue with fatigue of muscles nit so much soreness they just get tired.now for stomach issues i limited my fat intake adding more fruit and veggies things ur stomach can easily digest. i was put an a enzyme to help break down the food. started juicing too. tremors still have those. O and im making sure i stay hydrated and getting enuff sleep.lemme know

    • nathan04973
      nathan04973 Gina1114

      Posted

      that is great thanks Gina ill let you know how I get on going to order some supplements and give them a go along with tidying up my diet, whats the enzyme you used was that prescribed by your doctor?

    • jo31926
      jo31926 Gina1114

      Posted

      Thanks Gina, feeling so low and like I'll never be well again. This sucks 😦

    • Gina1114
      Gina1114 nathan04973

      Posted

      nathan they super enzymes by the NOW company. if u tweak ur diet u may not need .look on amazon.

    • Pattydel
      Pattydel nathan04973

      Posted

      I too came back low on vitamin D. I am taking over the counter supplements. I guess this virus/disease robs us of this too! 🙁

  • iwant2bfre63673
    iwant2bfre63673 Guest

    Edited

    Hello, For the past 8 months I have been wrestling with these exact same symptoms and I do mean exact right down to the thrush.

    Other symptoms:

    swollen spleen

    congested liver

    ear aches

    On Friday I asked my Dr. to test me for EB virus. I've been begging this Dr. for over 8 months to test me for viruses. He won't do it. He refused again on Friday. He actually gave me a free sample of Afrin I when I told him my throat won't stop hurting. I had to DEMAND he actually look in my ears and down my throat. I've tried finding a new doc but everyone is booked up until end of the year due to Covid 19. At this point I'm looking into information for a walk-in lab where I can order the exam myself.

    Looking back I suspect I've had EB virus for years un-diagnosed. I've had bouts of unexplained "chronic fatigue," chronic sore throats, ear infections, aches and pains and more. Every time I've gone to the Dr. for years I've gotten a diagnosis of "upper respiratory infection" which really means nothing. Now I wonder if it wasn't EB virus all along.

    God forgive me but I've come to hate the medical establishment in the U.S. All they care about is money. I've started reading up more on this using resources by Integrative Medicine doctors and Naturopathic doctors. I've heard so many people say that they've had to go to one of these sorts of doctors to get any help at all. The problem with that is that insurance will not cover these sorts of doctors who treat the whole body and actually try to find the source of people's illnesses as quickly as possible to help get them well. You're forced to deal with these horrible MDs who only care about money and can only look up pills in a little book to prescribe even if they don't help.

    I'm not a hypochondriac and would love nothing more than to return to my normal healthy life. However, like many others I have to play medical detective to figure out what MAY be wrong with me. After that I have to put on my psychologist hat to figure out how to stroke the ego of the Medical "professional" to try to get him to allow me to have a test to see if my sleuthing may be correct.

    Trying to google symptoms is a waste of time and only make matters worse yet so many people are forced to do that. Google will always tell you that you have cancer no matter what. So now on top of being stressed by just the illness, you're wondering if you have a deadly disease. Things need to change drastically.

    I pay thousands a year for "healthcare" insurance but can't get any health or care out of any of the upmteen visits. The mental, physical, and emotional stress takes it toll. I try my best to keep a good attitude, be optimistic, and fair to each doctor I go to for help. My goodwill is not reciprocated. I'm just another medical chart for them and another coin in the can for their medical practice.

    • Pattydel
      Pattydel iwant2bfre63673

      Posted

      Hello,

      I am so sorry you are suffering from this and sounds like you could have EBV or infected, at some point. Can I ask why your doctor is refusing to run the blood work? Seems odd he is refusing when all your symptoms point to EBV/mono. I'm about a year in a half into it and my doctor continues to run labs for it and each time they are high. I felt better in April 2019 and believe it may be back...not sure if that's even possible, but all the same symptoms are back along with new ones. It very well could be I got sick with something else and my immune system is still too weak to fight. I've been on two strong antibiotics and still not better! It's very frustrating indeed and there's nothing they can do for EBV but rest, eat right and ride it out! Best of luck to you and hope you get answers soon!

  • nathan04973
    nathan04973 Guest

    Posted

    HI everyone hope your doing well what are your thoughts on this supplement stack plus am eating a Mediterranean diet as well I checked with a pharmacist and they gave the all clear to continue on the supplements but I noticed a slight increase in anxiety, heavy muscles, brain fog and internal tremors that could just be my body getting used to the supplements?

    .enzyme q 10 200mg holland and barret

    . Korean ginseng tablet form (asdas own)

    .omega 3 tablet form

    .turmeric holland and barrent

    .vitamin B complex B12 B6

    .vitamin D prescribed by doctors for seven weeks pill form 20000 un twice a week

    any input would be helpful

    thanks

    Nathan

    • jo31926
      jo31926 nathan04973

      Posted

      Hi Nathan

      I also eat the Mediterranean diet and have done since 2016. I've also suffered with the abdominal problems you mentioned. Eating more vegetables certainly helps. I have actually noticed that when on the rare occasions I eat something higher in carbs my throat hurts more. I got my confirmation that I have ebv antibodies. Not an active infection. The doc said it could take 8 months to go away.

    • nathan04973
      nathan04973 jo31926

      Posted

      Hi Joe glad the diet is working for you I have had really zig zag days with recovery and symptoms really good some days and rubbish others and it seems to be when my stomach acts up so am hoping this may go on its own if i continue eating well and will help ease of my other symptoms stomach pain is indeed my worse problem the pain is unreal some times am only on 5 months now so hopefully it will go any tips on what you think could help or anyone else have any input in terms of gut health? I am noticing slight recovery more energy and i can watch tv or go on computer all day so am hopeful the next few months will see improvements am doing nothing other then pottering around the house so am lucky in that aspect and i have alot of support

    • jo31926
      jo31926 nathan04973

      Posted

      Hi,

      How are you doing these days?

      I am going through a patch of having horrendous back pain - just on the one side. It is agony. Also struggling with stomach problems now. I am so bloated, it just won't go away 😦

      When will this go away?

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