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2 years of mono

Posted , 7 users are following.

lob12506
lob12506

Hello,

in April 2016, after almost fainting after swimming, I started to feel a bit weird, spacey, and tired. The doctors told me Im just stressed, so I decided to shrug it off. I was graduating at the time, I attended a few festivals, smoked marijuana, drank. At the end of August I extremely crashed. I didnt know where I am, who I am, who are my parents, it was like I was in coma, could not think AT ALL, but could move if I absolutely had to. I underwent all the possible tests, MRI, EEG, Hormone tests, biopsy of lymph node, and serology for infections like lyme (2x), toxoplasma, yersinia, HIV, syphilis, etc. The only thing that showed up was that I probably had mononucleosis recently, but it was supposed to be over. Since then the feelings have improved, but are still strong enough to prevent me from studying. I missed 2 years of university because of this and this april it would be 2 years since the beginning. Other symptoms were: join pains (not anymore), extreme eye floaters and blurry vision (almost gone), sharp sounds made my ears to "pop" (almost gone), pain in testicles (gone), (sex and masturbation felt weird, ejaculation felt like peeing, no pleasure), on and off low grade fevers (prob. gone), irritation in urethra after peeing(sometimes still now), sweat and urine had this weird smell like pasta (still have it) lymphadenopathy in groing and neck (still strong), arrhythmia when laying down (milder than before but still), mucus in the back of the throat (still), and the worst- extreme brain fog (still have it but much milder than in the begining) and extreme fatigue (still sometimes)

I must admit that I have some days that I consider good and few moments where I feel like before, but most of the time I still feel it, and I am exhausted and run down. Then every week there is some kind of relapse, where I feel really weird, disoriented like in the beginning, then I crash with extreme fatigue, and the following 2-3 days I feel like I have poison in my blood, sweating that smelly sweat and feeling like s**t. During these days I experience extreme depression, and I had experienced extreme anxiety which went away. However, they are not caused by the bad feeling I experience, but rather direct effect of the virus. I know those feelings are superficial and go away soon, but they overlap my normal thinking. After the relapse I feel super good for a few moments and then back to the mediocre symptoms.

The worst part now is that I fear that either I will never get better, or that it is something else than mono, since I did not get official diagnosis. I was just told by few doctors that I had it sometime when my symptoms started but it could no longer be it so long after. Other doctors said it could be it. I am so lost, tired and sad. Fortunately, over the 2 years there was no time when it would not be improving.

0 likes, 35 replies

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  • craig07920
    craig07920 lob12506

    Posted

    Hi Lob,

    What can I say so sorry to hear you've had such an awful 2 years with mono. I really do empathise, I was lucky in a way that after 10 months things started to improve but I would definitely say it took in the region of 1-2 years to feel almost back to full normality again. I just want to reassure you that things will continue to get better and that you won't always be this way - it' just seems to hit some people so hard and takes longer some than others - that doesn't mean to say that you won't get better still because you will. And the symptoms and presentation you describe definitely sounds like mono to me - I thought the same how can mono cause all this and started to worry it was something else when it wasn't.

    Taking vitamins and herbs really helped me - a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), B complex / co-enzyme q10 (for energy levels and nervous system) and siberian ginseng and flaxseed oil - all these things really helped me, definitely worth thinking about as can really help your immune system cope better and kick it out for good I really hope.

    Thinking about you and believing 100% that you WILL make a complete recovery, even though it's been going on for so long and it's hard to see any hope - there is hope and I truly believe that God will bringing healing - there is life after mono - hang in there and the forum here is good for keeping a tab on as some great people who give encouragement and good advice who know what it's like to go through the horrible experience of mono.

    Hang in there and just take a day at a time - thinking of you.

    Craig

    • lob12506
      lob12506 craig07920

      Posted

      Thank you for support Craig, I noticed that you comment on lot of threats here, that is wonderful. 

      I was taking a few different combinations of vitamins and supplements throughout the last 2 years, right now I settled for Omega-3s, Vitamin D, Probiotics, mineral supplements like selenium and zinc, and curcumin. Additionally I eat a lot of citruses and fruits and veggies so I think Vit. C is covered and also eat fresh ginger.

      The worst part of the illness now is that mental confusion and brain fog, where I look at my family and they feel like stranger, and feeling like everything is a dream. These symptoms make me worry, if it is something else or not.

      Originally, I was afraid I have Lyme disease (even though I had 2 negative tests long time apart) because of the bulls**t horror stories on internet, but now not so much anymore.

      More recently, however, I started to worry it is all due to Epilepsy, since it can cause all these "jamais vu-s" and strange feelings. The reason is because during all the tests, they discovered I've got epilepsy-like waves during special circumstances they were testing. Even though I have never had a 'seizure' and HAVE felt these strange sensations even during EEG which came back as normal, they said it could be the cause. At the time, I was absolutely certain, (very strong intuition), that it has nothing to do with my symptoms, but still tried the meds. After half a year of no change, and proof, that an actual EBV infection occurred in my body I went off the meds. 

      Now I am not so sure, mainly because it is going on for so long and like you said, I worry how can all these be caused by mono, 2 years after infection? But on the other hand, I try to stay rational, I know that epilepsy can't cause the swollen lymph nodes, rash on skin and few other symptoms. Hopefully it will be over by September so I can start University in good health. 

      Lob

    • craig07920
      craig07920 lob12506

      Posted

      Hi Lob,

      So sorry to hear things have still been so tough, really hoping and believing things will get better for you. Just wish we could understand why these things happen, I know God has a reason for them and it is for good in the long term I do believe - so frustrating I know when time goes by and things don't seem to make progress. It sounds like you have been doing all the right things too, just want you to know I'm thinking about you and still believing you will get there with this.

      Those epileptic type symptoms must be awful too.....I'm not sure if there is any connection with mono I think nothing is off the cards with this virus and the type of symptoms it seems to cause. It may well be the nervous system just being so active trying to deal with everything. Hoping everything calms down and the brain fog too, B complex is really good for that.

      Just deal with things each day as it comes is all you can do - it's hard to stay rational and positive I know, but there is hope - there really is and I believe you will 100% get there despite this taking so long.

      Take care and hang in there

      Craig

    • lob12506
      lob12506 craig07920

      Posted

      Thanks for all the support Craig, just wanted to ask, do you have any residual symptoms from time to time? When you are tired, or drink, or have stressful period in life, do you still feel it little bit in the back of your mind? Or has it vanished completely?
    • craig07920
      craig07920 lob12506

      Posted

      Hi Lob,

      I had mono about 11 years ago, I would say the first 2-3 years in particular I had small lapses and periods of recurring symptoms. Sometimes still when I have a flu or virus or am under the weather, it can hit me a bit harder, but honestly you can and will live a full and healthy life again after this Lob - I know it's been a long time still but hang in there....your body reaches a stage where it copes and the virus can do you no more harm, no matter what stress or anything you're under - hang in there and thinking about you still. Still believing 100% in your recovery.

      Craig

    • lob12506
      lob12506 craig07920

      Posted

      It just seems to me that I will never get to that stage. I am currently on trip in Bulgary, and havent slept the first night well because of late flight and the next day I crashed really hard, feeling as bad as year ago again. I am with 3 girls who want to party and are energetic and im this tired mess, it makes me really depressed. I just lay around, cant even sleep since the virus messes with that as well.
    • craig07920
      craig07920 lob12506

      Posted

      Hi Lob,

      It's so frustrating I do understand, it's hard to accept that you need to step back for a while and when it's been going on for so long it really takes confidence away, I know what it's like. Remember though that you still will make progress and I do still believe you will get there Lob, even though you can't see it right now, and it's taken much longer that had hoped, recovery still can and will happen I totally believe that. It's wise to avoid the partying and everything for now, it's hard when others seem to be free to do what they want, you will be again though - trusting God with it Lob. Thinking about you and hang in there - one day at a time.

      Craig

    • lob12506
      lob12506 craig07920

      Posted

      I feel like ending it on days like this. Im afraid I might do it if I miss another year of school.
    • craig07920
      craig07920 lob12506

      Posted

      Hey Lob,

      I'm so sorry you are feeling so bad....please don't give up. Not giving up doesn't always mean out there fighting on the front foot trying to live life normally, sometimes it's just about rest and life balance. I know you're weary man, just hang in there and remember this nightmare is going to end and there IS a good and healthy and happy life for you still after this - I truly believe that.

      Craig

    • brent_83487
      brent_83487 lob12506

      Posted

      I know how you feel. I have been sick for about the same amount of time. I see things that I use to do and I have trouble doing them now. I use to be active and now I have to pace myself. I went through a divorce while sick and it has been hell trying to adjust while being sick. I know how it feels to want to give up. I just keep saying one day at a time with the hope it will get better.
    • craig07920
      craig07920 brent_83487

      Posted

      I totally understand Brent. Because of my own health issues been going through the same thing, there are places I go and people I see and moments when it hits me that I was so well and healthy there or then, and just long for that to return and it's so painful and upsetting.

      You're right about just taking it one day at a time - it's a cliche I know but it really is all we can do and just trust in God and rely on and be grateful for His grace to guide us through.

      Hang in there Brent - I TOTALLY believe you're going to make a full recovery, still believing that without doubt.

      Craig

    • lob12506
      lob12506 craig07920

      Posted

      Thanks again for support Craig. 

      Are you having some issues now again? I hope youre alright.

    • craig07920
      craig07920 lob12506

      Posted

      Thanks Lob, yes been having some issues not mono ones but with prostatitis and back pain, been finding it hard. Thanks for your best wishes, sending best wishes to you too and hoping we can start to see things make progress soon, I believe God will help us.

      Craig

  • farhan64534
    farhan64534 lob12506

    Posted

    I am in my 9th month and while reading your symptoms i can totally relate them to my symptoms. I feel exactly the way u do .i am sure if its not mono then its the same thing that u have.I am just praying and hoping i feel better soon as i am supporting my family and i have to work 12 hours everyday.I wish and pray for everyone's quick recovery

    • craig07920
      craig07920 farhan64534

      Posted

      Hey Farhan,

      That's amazing you are even able to work at all let alone 12 hours a day when going through this, please give yourself some rest too and don't overdo it!! Your body does need time to get over this fully, but you WILL get there I truly believe that you will be past the worst of this now (even if it doesn't feel like it at the moment) - and the next year will be one of complete recovery I hope and pray too - I believe that God will bring healing for you and Lob, hang in there.

      Craig

       

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