My One Year Since Getting Mono Update

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Hello all! I wrote a post about a week ago but I had intended on doing one on this day for awhile now, so here goes.

Spring and Summer 2017 I had been pushing hard. I rock climb, its my passion (I currently work at a gym doing instruction and other things.) It is a very demanding sport, but I love it. Anyway, I was climbing about five days a week, often outside, in increasingly hot conditions. In July I started experiencing a weird sensation in my throat once every few days. A weird, vibrating feeling that almost felt like I was gargling. I'd never experienced a sensation like it. Thought, maybe its a muscle spasm or maybe I'm getting sick. Now I think it was the virus incubating or something.

August 1st, 2017. Its hot, there are wildfires messing up the air, I'm out playing disc golf before work. As I get to work I feel like my heart is beating faster and more noticeably than normal. I go in the cooler to cool off (grocery store) and feel slightly better. Over the next few days, I get dizziness, flu-like feelings, a sore throat and occasional bouts of a brief racing heart. Tacking it up to the flu or something, I press on. I go on a trip to Canada that I'd scheduled months before that I'd been looking forward to. Climbed for four days despite frequent bouts of dizziness, faintness, exhaustion after climbing. August continues on and I continue to experience intermittent symptoms like this. I go to a Naturopath and he thinks I have a combination of allergies and a low grade virus. I get essential oil blends for immune health.

September, sick feeling at times but still taking climbing trips and going to the gym frequently. October is the same. End of October I get a racing heart at work and feel panicky, fluey, unwell. Halloween I drag myself to the local climbing spot and manage to do my most difficult route ever, knowing it'll be rain for months after that day. It takes so much out of me I'm severely exhausted. I make an appointment to a GP and get tests done. At first all they can find is my blood pressure reads a bit high. I insist I get tested for mono because after scouring online its the only thing that roughly matches my symptoms and duration. A few nights later I wake up feeling very flu-like, heart racing, feel panicked and unwell. That morning I go to an urgent care, who have me go the the ED. I get my chest x-rayed and get an appointment with a cardiologist. I eventually get to wear a holter device for two weeks that takes readings of my heart. That came out normal, they said. Chest x-ray normal. They prescribe me a low dose medicine for blood pressure which I take for two rounds and then stop. A few days after the ED visit I get the results that I have a recent EBV infection and I have mono. I am relieved to have a diagnosis. I am granted a week off of work and then reduced hours for several weeks after.

The next few months I experience all manner of symptoms, I make it to work all but a handful of days, and I experience gradual, cyclical improvement.

On New Years Eve, I go to a movie with my girlfriend and almost have to leave because the dark room and loud noises from the theater overwhelm my system.

Mid February I wake up weak and lethargic, yet manage to get myself to an endurance climbing competition at my local gym and get second place out of over 100.

March I go on a five day trip to Bishop, California to climb. I am nervous to be away from my girlfriend and be camped out in the desert in case I start feeling ill out there. I feel very flu-like on the long car ride over and have visions of asking my friends to drop me off and let me catch a plane home. But it passes and I commit to the trip. I am weaker than I used to be outdoors but I still have fun and stick it out.

April I get engaged. I have mostly good days in April.

May I go on the Whole 30, eat very healthily for a month. I also quit my old job and started at the climbing gym. I feel mostly good this month too, just a few moments in a few days a week where the flu-like feelings come into my head.

June I eat crappily after all the diligence of May. I feel like my climbing performance is almost back to where it was the previous year. The one big bummer is I'm noticing I have a mysterious allergy in my living room of my apartment. We try everything, carpet cleaning, dehumidifier, expensive purifier, fans, cleaning every inch of the wall. Landlord swears we shouldn't have mold, its not an old building. No sign of major water damage really, and no one feels anything but me. I lived here for almost five years without this sensation. Its like mono exacerbated my allergies.

Then July. Fresh off another four day climbing trip, I continue the high pace. Its summer, its heating up. On July 4th, after ten days straight of climbing, I start feeling rather bleh. I try to take it easier, but it seems like my high pace and lazy diet is catching up with me. One night I wake up middle of the night with the malaise, which hasn't happened since like December or so. We have a heat wave mid month, and one day after work I'm driving home, its so hot and I feel so stressed, and I get the racing heart feeling again for the first time since November or December. Needless to say, I'm discouraged. I'm worried I overdid things and in combination with the heat suffered a major relapse. I call in sick one day in July, and barely make it through a couple others. As I realize the potential severity of what has happened, I scale back my climbing like crazy. I know it sounds crazy to you guys, but the longest I had gone without climbing this whole year was 7 days back when I first got diagnosed. The doctor had checked my spleen and said I was okay to exercise. So I'm back on the horse of eating healthier, and resting more from climbing than I have all year. The last two days I've felt a lot better than the previous three weeks. I'm rally hoping its just a bump in the road.

So as you can see, I've lived a pretty functional life this year, though I've had at least some symptom of this virus almost every day. It hasn't kept me from living life, but it has given me a lot of suffering and stress. I think I'm finally understanding the need to take it slow and look into the future, that I will have years ahead to give things my all, but I need to scale back if I want to be rid of this thing for good. I believe that I will get over this thing for good. I appreciate all on here who have given me encouragement. Anyone who has a question or comment I'm happy to talk to.

Thank you,

Nick

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  • Posted

    Hey nick,

    It’s beautiful you have a passion, and im not sure how old you are, but for sure keep working hard and keep climbing because if you really love climbing then you can get really far.

    Overall I don’t think that you climbing since the beginning really affected your setback right now, because you kept improving a lot over the months, but maybe you did overdo things recently, and got a setback, I do want to reassure you, it is scary I know, but I believe you will bounce back, and it can take time for you but remember it’s just a dip and a setback and your body will bounce back from it. 

    I first got sick at the end of January, back then I didn’t have to miss school, and in February it improved a bit, March I started hanging out with friends again, April I started playing a bit of badminton in PE with my class, (without overdoing it though) and skating the ramps a bit. And in May I felt about 70% healthy but it all came crashing down and for the time since late may I have been getting worse and Im not improving at all and I am getting worse and feel worse than I ever have, so I’m really worried.

    I am really worried I’m not going to bounce back from this. So I think that you should just take it easy and relax until you start getting back on track again. 

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    • Posted

      Thanks man. I was 27 when it started, just had my birthday this July so I'm 28. Yeah you make a good point, I did improve even with activity, but there were days I'd do it and feel good and right, and days I'd do it and feel breathless after each go and I think its those times that may have worked against me. I'm definitely not as bad as I was back in November and December, but really feel l like the thing went and reactivated on me. I'm hoping I turn that corner soon. My advice to you, at least my philosophy on things, is to keep moving in some way. Even if its just a short walk outside of your house, get out and catch the morning rays of sun. Also, all the worrying can definitely compound things. I found when I looked up stories of long bouts of EBV and CFS, it was depressing and full of people resigned to their conditions. But when I looked up, say, glandular fever rock climbing in google, I got on climbing forums of climbers talking about having mono, some for a year or more, who overcame it and still do the things they love. I think the cfs and mono forums tend to draw people who are chronically ill, but there are just as many out there who recover even after long bouts. Never give up hope.

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  • Posted

    Hi Nick,

    wow I must say I am impressed that you managed to keep climbing throughout this whole thing! Clearly you are a very determined person and you don’t give up easily. 

    When I was at my worst even thinking about going out for a walk scared me. I could barely walk to my washroom without getting dizzy, winded and feeling like my legs were going to collapse. Slowly though, I started to go out. At first just to the park to sit on a bench, then eventually a shorter walk, and now I can go on a decent 20 minute walk and feel not too bad afterwards. For everyone who is going through this, I think it is important to start building up your endurance very gradually and slowly so as not to push yourself too hard and go into a relapse. It can be difficult to give up the active lifestyles we had before, but the better that you take care of yourself in the early stages, the better chance you will get back to that lifestyle soon. 

    Thanks Nick for sharing your story, it was definitely a more positive one and I know it definetely inspired me to get back on track. I hope this setback of yours doesn’t last too long but from your story it seems like you are a fighter and I have no trouble believing you will be back on your feet soon.

    take care, 

    Dominika 

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    • Posted

      Awe thank you, I’m glad I can be a source of encouragement to someone. Yeah I never really wanted to let this thing get me down. I think initially I should have rested a lot more and I underestimated it, but throughout the months climbing has been a source of healing and mental health for me. What are things like in your journey?
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    • Posted

      I had symptoms of Mono probably stretching back even to December but it came on so gradually I never noticed anything was really wrong until it really started to get bad, which was around March. I caught a horrible flu and since then everything was off. I developed strong anxiety, felt super sad for no reason,  had a weird off balance feeling like I was just going to fall over any second and felt sleepy after doing a lot of exercise. Through all this I kept going to school because I had blood tests done and only thing that was off was low iron so we assumed my symptoms came down to that. Eventually I just crashed in May and didn’t go back to school for the rest of the school year. Luckily sincd May my physical symptoms have only gotten better and not worse. I would say anxiety is my main issue right now that I am not so worried about my physical symptoms. This virus just makes you worry and worry about nothing and everything. 

       

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    • Posted

      yes im on my 2nd round of ebv the first time with no mono or fatigue ...i have since the first episode 12 years ago had panic anxiety .learned to manage it best i could but was never the same after that .

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    • Posted

      I do not understand how a virus causes anxiety i guess you just feel so unwell and off that all you can think is the worst. I can not wait until the day i beat this and can say i am well and healthy. Until then you just fight the good fight with God on your side friends and family.

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    • Posted

      I have a history of anxiety but this is the worst I ever felt. And I was diagnosed with acute stress disorder because of the illness and the 6 weeks it took to get diagnosed where I became convinced I was dying of a deadly disease so I am now recovering from that with therapy and considering meds. I think mono effects the nervous system somehow and interferes with brain chemicals. It must. Everyone who gets it has these issues with anxiety!

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    • Posted

      yes you are so right it does something to your nervous system ..i tried several different meds but they were awful and actually made anxiety worse . the only thing to take is xanax and valium or medical marijuana . and yes if youve suffered with anxiety before im thinking its all the ebv that just doesnt leave your system but doesnt fully reactivate .

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    • Posted

      Definitely hoping and praying for God's help for you Josh and everyone on the site - let's stick together and keep faith He is going to help us with all our troubles and pull us through. He does tell us that after we have suffered a little while He will restore us and build us up again, and that He has plans for hope and a future for us - holding onto those words today as always having a bit of a tough week too with pain.

      Craig

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    • Posted

      Hi Lori,

      Just wanted you to know was thinking about you today, hoping that you are feeling more settled and okay. Anxiety, fear, worry and panic are such horrible things Lori. Have been experiencing some of that myself this week due to foot and back pain and just so much wouldn't wish that on anyone. Praying God can set us free from the lies the enemy tries to make us believe, and for us to remember that we are secure in God's hands.

      Hoping for a good weekend ahead for you and still fully believing that this year is going to be one of recovery for you Lori, more and more as time goes on.

      Craig

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  • Posted

    Hi Nick,

    Its is such a strange virus, when I get a little bug it feels like mono symptoms again.

    I have heard it hides in B Cells and it makes me wonder if the immune system finds the viruses that are hiding and in that process we have mild relapses. Who knows with this virus.

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    • Posted

      Hey monotoo always good to hear from you. Yeah I had read something to that effect somewhere. I’ve been taking this Monolaurin stuff lately which is supposed to be able to break open the lipid shell that the virus hides in. It has a lot of great feedback on reviews online regarding ebv.

      Yeah I feel like it’s somethihg that you subdue but its still got embers burning and if you get another virus in you and let’s those embers kind of fire up again. The longer you go and not let yourself get sick from other stuff, those embers finally burn out for good. Hope you’re well, thank you for the kind words.

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    • Posted

      What's opinion of the Monolaurin? Do you think it's working? I am almost 10 months in with mono. I was progressively getting better but got hit with a nasty relapse about 5 weeks ago. I started a monolaurin build up 3 weeks ago. I am holding out hope that something will make a difference and help me out of this hole. 

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    • Posted

      Hi Don,

      So sorry to hear that this relapse is causing so much bother right now for you. It is so frustrating and discouraging, I remember a relapse at 9 months for a similar length of time, and it was after that relapse that things really started to change for me, about the 10 month mark, when I started to feel different and like things were starting to get better and recover - just want to let you know that sometimes a relapse like this can happen before full recovery, as if it's the last act of the virus and remember after each relapse your body is stronger and more equipped to deal with the virus, so hopefully this is it finally getting on top of it for you. 

      Sorry I can't offer any experience or advice on monolaurin, I've read a few others on different threads who have taken it though and hopefully they can post and offer some advice and help. I know what it's like when things are so bad you are just desperate to take something or try something that can help and offer some new hope. 

      Thinking about you and still fully believing you ARE going to recovery fully Don - hang in there for now and hoping things settle down really soon.

      Craig

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    • Posted

      Hey Don sorry for the late reply. Ya know, it’s hard to say about the monolaurin. It’s endorsed by some natural health people online that I respect, and the mode of action of it sounds convincing to me, the way it helps dissolve envelopes that the viruses hide in. Online there are some compelling user reviews about its effectiveness. In my experience, it seems that when I take it I tend to have pretty stable days where I feel pretty good. I had started to do a progressive increasing dose regimen of it but stopped because I had a flair up of symptoms which I believe was called from over exercising, and I stopped taking all the supplements at that point because I didn’t want to give my body too much to process. Now I’m just taking a standard smaller dose along with loops map vitamin c, l lysine, garlic, and a mushroom immune supplement. I’ve been doing good the last few weeks with the exception of today I’ve felt rather poorly again and I believe it’s because I exercised three straight days and only slept five hours or so last night. I feel that none of these supplements matter quite as much as quality of sleep to me! I’ll keep taking them though, I have a lot to go through. Hope you’re doing alright currently.

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    • Posted

      I take it in coconut oil form ... is that way strong enough do you think ?

      Also you’re working out ? I was told rest only with maybe a walk ... I HATE not working out ! It’s my drug but I want to get better more than anything so doing as I’m told 

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