Someone ease my doubts about my Mono diagnosis?

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Hi. I've had...a hell of an experience since my mono diagnosis about 2 weeks ago. I'd like to try and tell the full story as best as I can to try and get some insight from other people online. For reference, I'm a 23yo Male, I have a history of anxiety/OCD disorders and ADHD, both of which I'm currently on medication for.

Alright, here it goes:

My birthday was Tuesday, April 23. I was feeling better than ever. Great job and workplace and amazing co-workers who brought me gifts and made the day special, I've been on meds for the first time in almost 5 years that have helped me feel clear and emotionally stable, I'm the thinnest I've been since 2013 and just overall was feeling great. I also allowed myself to start having coffee again for that week and indulged myself greatly (caffeine hurts my vocal chords and I sing a lot).

Oddly enough, as this week progressed, I started to feel pretty sluggish and unbelievably exhausted as the days went on. I thought nothing of it originally and attributed it to caffeine crash. But then on Saturday April 27, after 7 hours on my feet at work, I finally collapsed. I could barely walk, let alone keep my eyes open and stay awake. Additionally, my chest felt tight and my breathing was short. It was hard work to get a deep breath in. I went home early but had to lay down for about 30 minutes first before I felt able to walk to my car (where I once again collapsed for about 10 minutes before finally driving home). I barely made it up the stairs when I got home, and passed out at about 7:30PM that night (my usual bedtime is around 10PM for reference).

That weekend things got a little bit better. Sunday was rough at spots but nothing like the night before, so I brushed it off and went about my business. Monday felt completely normal, and I stayed up late that night to watch something on TV and ended up going to bed around 1AM (this was with the help of caffeine, of course). However the shortness of breath remained.

Tuesday I had my usual high energy, but combined with some odd bodily fatigue. I also cut out the caffeine thinking it had some sort of effect on whatever was happening, mainly the breathing. My headspace was clear but my body felt completely fatigued, and it was hard to walk from spot-to-spot at my job. I worked a half day as I had a commitment in the afternoon, so I left work and thought nothing of it. But that night I collapsed early again...I had to rouse myself up to pick up a new prescription around 6PM (an afternoon booster for my morning ADHD med) and could barely keep awake driving to the pharmacy. I got back home, took the med, and collapsed and fell asleep before 8PM once again.

The next day was awful.

Could barely walk, shortness of breath, brain fog, fatigue, dizziness, and chills. I lasted almost 2 hours on the floor at work and had to go to our office. My managers, bless them, were worried I was having a reaction to the new medication I was on and had me sent to an urgent care center to clear me to drive myself back home. Once that was done, I got an appointment with my PCP for that same evening, and rushed there after work. At the appointment, they discovered I had a rapid heartrate and did an EKG to discover my heart rate was 115 bpm. My PCP was concerned and ordered several labs to be done, including a mono test after she saw my fatigue. PCP told me I had to stay home from work for the next 2 days.

I got the labs done the following morning and just rested at home. The next day I received the news that my mono test came back positive and was told to remain off work until the next week. I spent the next two days doing as little as possible and actually felt OK for the most part. I started taking a weight-loss aide that Saturday though called Hydroxycut, which contained caffeine. So caffeine was re-introduced into my diet.

Things were going okay until Sunday night, when I received an automated test result for an EBV Panel. Being that my PCP wasn't in-office on Sundays, I started frantically researching what all these numbers and things meant.

To my shock and embarrassment, the panel confirmed not a current or even recent EBV infection, but a PAST one, probably from years ago since I do not recall EVER having had mono.

So in my head, I begin thinking: so...I DON'T have mono?!?!? What the hell?!!?

I was angry, shocked, and more than anything I was embarrassed. What did I miss work for??!???!?! What is everyone going to think, that I was faking it and lying? Was the fatigue just caffeine withdrawal?!?!? And why did my blood test come back positive!?!?!?

I was furious. The next morning I called my doctor's office for an explanation of why it came back with those numbers.

They returned my call to explain that mono was more than just EBV, other viruses can cause mono. My PCP later told me, however, that because there are so many viruses that cause mono she wont test me for any further viruses to know what type of mono I really have. The original blood test was mono, so I have mono, and they have to treat me based on the symptoms which I had exhibited.

I tried to believe this but the seed of doubt was already planted and I was frantically trying to find symptoms to suggest mono other than fatigue. I basically no longer believed that I had anything and that my mind was playing tricks on me and making up the fatigue symptom, or it was just caffeine crash and nothing more. I went nuts. I desperately tried to find evidence of ANYTHING that could be other symptoms. I saw that my tongue had faint white spots, was coated and scalloped on the sides. There were also 2 white bumps in the back of my throat/tonsil area as well as discoloring on the sides. Also I had gained a double chin which wasn't there several days ago and I hadn't gained weight so it seemed below my chin was puffy, at least for a couple days. I sent these to my doc to get a confirmation these could be mono symptoms because I was desperate for something to confirm I truly had it.

I returned to work that Tuesday, May 7, to begin working half-days to see how I handled it. I was still taking the Hydroxycut. Each day basically went like this: I felt fine the first couple hours, sometimes I was so energetic I felt there was no way I was ever even sick, but then by the 4th hour I was completely depleted and fatigued. But now I was convinced this was only due to caffeine and nothing else. I even decided I was going to punish my body by purposefully pushing myself to the physical limit and overloading myself with caffeine one night so that, if I truly had mono, I would be so physically worn out the next day that there was no way I could doubt it. I think I kept myself up until past 12AM that night. I of course crashed that following day's afternoon but still was doubting myself because it still could've been caffeine crash/withdrawal.

I began getting fed up with doubting that I was truly sick and finally decided on that Friday to take NO stimulants outside of my ADHD meds and see what the day was like. That Friday, May 10, was awful. Horrible fatigue, couldn't stay on my feet, had to sit down every 15 minutes to get energy to walk. Awful. I ended up going home after 2.5 hours. I rushed home and fell asleep that afternoon.

This should've convinced me I had mono and that caffeine was just masking my symptoms, but my OCD tends to just kick in and I still couldn't let myself believe it. I thought it must've just been caffeine withdrawal and nothing more, but I still wasn't sure.

The next day, Saturday May 11, I reintroduced (a hefty amount of) caffeine as part of the morning. On the drive to work, I started getting very randomly lightheaded to the point where I had to pullover and stop driving for about 8 minutes, and kept someone on the phone for the next 20 minutes or so to make sure I was okay. Felt OK after that, and had a little more caffeine before going on the floor at work. But this time, all the caffeine it only helped for about an hour. The rest of the day was horrible. I spent the next 3 hours forcing myself to walk and stay on the floor, constantly needing to sit down and rest to regain energy to walk for a few more minutes. I barely made it the full 4 hours of my shift.

Sunday and Monday were some of the worst days yet. I would wake up, take pre-workout, go to the gym for two hours, come home, and collapse for the rest of the day remaining mostly bedridden. These two days finally started convincing me I might truly be dealing with mono fatigue. I was so fatigued Monday afternoon I was thinking I might actually have to call off work the next day.

Yesterday, Tuesday May 14, I went into work thinking I might be okay, but halfway thru my drive I felt the exhaustion start creeping in. I got to work, put my head down and rested, had some caffeine, tried to go on the floor but for the first time the caffeine made no difference. I completely collapsed. I made it about 1.75 hours before I had to call it quits and my boss sent me home.

I called my PCP on the way home and told her what was happening and what she recommended. She told me I shouldn't work the rest of the week, and prescribed me a taper dose of prednisone to see if it helped the fatigue at all. I had a big event on Friday at work that I really wanted to be there to help for, so we settled for Wednesday and Thursday off and return to half days on Friday. But my job talked it over and decided they agreed with my PCP and wanted me off until the next week since they felt my trying to come in was only lengthening the healing process.

So, here I am today. I have been at home basically all day doing pretty much nothing, but I again took a bunch of caffeine so I've felt pretty normal (minus dizziness/light headedness every time I stand up or try to sing) and fine all day, which has once again started myself doubting if I really truly have mono or if every instance of fatigue was psychosomatic or caffeine withdrawal and that I'm missing work for no reason and letting everyone at my job down for nothing.

TL;DR: Got horrible exhaustion/fatigue final week of April. Mono test comes back positive. Off work for 5 days. EBV Panel comes back few days later, reveals I had a past EBV infection, not current. Mind becomes convinced that "you dont have mono and let your job down/missed work for nothing. All your symptoms are imagined". Doctor explains other viruses cause mono, and since my blood test was positive I definitely have it currently, but I can't allow myself to believe I have mono, I just think its caffeine withdrawal every day due to my use of caffeine products. Work half days and keep collapsing, still not convinced because it could still be caffeine. Last weekend I spend most of my days in bed. Yesterday at work collapse after 1 hour. Have to miss 4 more days of work on doctor's orders. Still unsure if mono or psychosomatic because I feel normal when I have caffeine.

So...yeah. After reading this is there anyone who wants to offer any words on my mono being real so I can stop beating myself up mentally over this? I just want to accept that something is wrong but I keep doubting it and trying to find other reasons. Anybody have anything helpful to add? PLEASE???

I guess my main problem is just how normal I feel when I do have caffeine, or at least most of the times I do, and it just seems weird how normal I feel with it. But then the fatigue when it wears off isn't like the usual caffeine crash (which I usually don't experience) but it could still be that, right? I just don't know!

Help. Please 😕

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8 Replies

  • Posted

    I should also add:

    My PCP barely gave me any info about this virus when first diagnosed. She said nothing about the progression of the illness, or what other symptoms I could experience. She never explained that some people have days where they feel normal and then the next day they could be fatigued again...the on/off nature was never explained. All she told me was:

    • Fluids and rest
    • Could last 3-4 months
    • No contact sports

    And she originally wanted me to go back to my full 8.5 hour shifts (with a 1.5 hour commute each way) after taking the initial few days off. So I honestly and truly went into this blind with no information.

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  • Posted

    hi, i think a lot of people on here have been through or are going through similar.

    i had no real diagnosis apart from the docs telling me i had ebv as previous infections but different on both occasions somehow. i think its one thing having the tests but another to find a doc that knows how to interpret the results! the only person ive not had the response 'mono only last 4-6 weeks from is my dentist whos friend had it in south africa and he said it took him years to feel normal again!

    i know its horrible and scary but try not to let the stress and worry get to you. from what i gather its just one of those things you have to ride out and it will eventually go 😃 go easy on the caffine while your body is trying to mend

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  • Posted

    Hi,

    some aspects of your situation really reminded me of mine. I thought i was just imagining it for a large portion of the time before i really crashed and thats when i knew. I thought anxiety was just making me feel weird (but the anxiety itself was a result of the virus, i had never suffered with it before and it has gone away now that im better). I did multiple blood tests too, for just about everything including mono but nope, nothing came up. on paper i was healthy but i had all the mono symptoms like all over weakness, shortness of breath, brain fog, feeling faint, you name it. Suffered badly from may 2018- september 2018 but after those months still had lingering symptoms, and still do occasionally. So to me, it seems like you do have mono and It doesnt sound like you are making anything up in your head. you really need to listen to your doctor and rest because trust me if you don't listen to your body it will take you so much longer to recover. Even when you feel more energetic, take it easy, you will thank yourself later! I hope this settles your mind a bit and i hope you feel better soon

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  • Posted

    I would say your story sounds like mono. You have GOT to let your body rest. The amount of caffeine consumption along with hydroxycut is simply masking your symptoms and not allowing it to properly heal.

    Trust your doc on this and stop beating up your poor body. it will allow the virus to take hold for longer if you don't get off the caffeine and hydroxycut.

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    • Posted

      Thank you for this. I guess my problem was, once I saw the EBV-panel indicated a past infection it opened up my mind to doubts, regardless of the very clearly positive mono test, and I haven't allowed myself to be sure ever since. Once I become unsure I try to find another explanation for everything and obviously the easy one was caffeine withdrawal, although those are two different types of fatigue for sure.

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    • Posted

      It's so understandable Brady for your mind to be full of different thoughts and to be feeling totally unsettled and frightened when not getting full clarity from tests and things. Do keep checking in with the doctor and seeking their advice and help, that's what they're there for, although I know how tough and wearying it can be when you feel like you're not getting the answers you need.

      Thinking about you Brady and remember God is the great healer - He is going to get you through this tough time, hang in there and just take things one day at a time and if you can talk to someone you trust to be understanding about how you're feeling, that's so important. You WILL get through this and get well again, I truly believe that thanks to Jesus. Message any time and hoping for a more settled weekend for you.

      Craig

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  • Posted

    Hello Brady,

    Thanks for taking the time to share your story, I'm so sorry to hear that you have been going through this awful few weeks of illness and worry. I went through mono myself a number of years ago and went through a lot of the same kind of awful days and experiences in the first few weeks, and I really do empathise.

    First thing I really want to encourage you to try to stop beating yourself up and to reassure you that if it is mono, and it certainly sounds like it could be with the extreme fatigue and symptoms you have been experiencing, that it will get better and that you will get through this. It's so hard not to worry I know and all sorts go through your mind, it really is a dreadful virus and makes you feel awful, but absolutely with some time you will recover from this Brady - it took me a bit of time but thanks to God only I was able to recover.

    Other thing to say that because your mono test shows a past infection rather than current one, it doesn't mean to say that you still aren't going through mono. My medical knowledge is limited but a lot of people with mono often don't even get a firm diagnosis because often the blood test just shows positive for mono in the first few weeks of feeling unwell, and then afterwards it would just show a past infection even though you are still feeling so unwell. I had lots of blood tests when I was going through mono, and it was only the one I had at the very beginning in the main that showed positive for mono, all the others in the weeks and months later showed normal even though I was feeling so unwell still and still going through the virus. But of course I'm no doctor or anything and always the best advice is to get the doctor's advice / information on this for sure.

    Another important thing with mono is to really rest and be much kinder to yourself. Sometimes one or two week's rest is not enough with this, it can take a little time for body to recover, so if you need to take more time out of work I would definitely encourage that, and it's so important to remove anything that causes stress when going through this virus. And also please I would really encourage you not to push yourself to physical limits at the gym or in work or anything if this is mono, because your body really needs rest and time and space for recovery rather than pushing things to the limit. It's natural to keep wanting to push through and live life as normal, it's what everyone does in the early stages of mono but it's definitely much wiser to rest and be kind and understanding to yourself.

    Also if you can cutting down on the caffeine intake can really help too. As someone who was hooked on pepsi for many years I understand how much just getting that boost can really help, but viruses like mono can feed off the caffeine and overall it is best to try to avoid or at least cut down, and to drink more water and eat healthy. Taking vitamins and herbs really helped me during recovery too, taking a good strong multi-vitamin per day (I take Immunace Extra here in the UK), a B100 complex vitamin and / or Co-enzyme Q10 per day (can be great for energy levels and nervous system) and higher doses of Vitamin C (1000mg-3000mg per day),and immune boosting herbs like siberian gingseng. But of course it's very important when taking vitamins and herbs to check for any interactions with other conditions / medication first before taking anything, or to check in with a doctor or herbal specialist first - I'm no expert on these things at all just going on things that have helped me.

    But most importantly Brady really want to reassure you that you will get better, whether this is mono or another similar or horrible like virus / bug. It can take a little time but truly you will get better, and try just not to beat yourself up and just be kinder to yourself at this time - you've been through a really really rough few weeks and if you can talk to someone you trust, be it a friend or family member or doctor or counsellor or minister or someone else you trust, that's so important too just to let someone know how you are feeling - and remember God is the great healer, you're not in this alone and I TRULY believe that even though this has been an awful time for you, that you are going to make a FULL and COMPLETE recovery with a bit of time - hang in there and thinking of you.

    It's a great forum on here with a lot of good people who know what it's like to go through mono or similar type illnesses, definitely keep in touch and let us know how you are doing and message any time feeling down or just want to talk about it all - you WILL get there with time!

    Craig

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  • Posted

    Thank you so much @craig07920 for your wonderful, kind response.

    Part of my problem is my issue with missing work...I have this OCD thing about getting nervous calling out of work where I only feel 100% comfortable calling off from work if there is not a shred of doubt that I absolutely cannot go into work, if that makes sense. Like if I can function normally in any capacity then I HAVE to go regardless of anything else.

    So when I finally begin healing and having better days with this mono, thats when I start to feel guilty and start doubting myself and thinking I HAVE to go back to work if I'm not having symptoms...then I crash again and have to miss more work...its hard.

    I wanted to ask, could you elaborate on the 'virus will feed off of the caffeine' thing? I simply cannot find any information about mono and caffeine and making things worse...even my doctor said its safe so I'm just really confused. Still caffeine is the only thing making me feel normal and getting me out of bed these past few days of bed rest at home 😕

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