Mono like illness...ebv / cmv who knows.

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Hi-

I'm 28 years old and I believe this is the worst thing I've ever been through. In February (26th to be exact) I was at work one day and it hit me. I got sweaty, my heart started to race and I felt like I was going to throw up. I got home and was 100% sure I had a stomach virus. After 3 days of digestive issues and no appetite I felt like something was wrong. My only symptoms at this time were extreme nausea, no appetite, and mild anxiety. I began to sleep 14+ hours a day and started having worse nausea. I went to the hospital where they thought I was pregnant. I knew I wasn't but let them insist on a blood test and urine test to make sure. I was sent home with some zofran and told my white blood count was like one point above normal so nothing major, no other tests. Now it is march 10th and still no appetite and a very nervous nauseous feeling. I was losing a little weight from not eating but thought this was going to stop soon. My husband thought I was crazy and chalked it up to anxiety and depression. I knew deep down that these anxious feelings were caused by something being wrong health wise not just anxiety alone. I had a full blown panic attack one day. First one ever. For no apparent reason. In the next few days my mom called me from Florida and told me my dad was in the hospital and had a ruptured aneurysm and it didn't look good. I think I switched off the sick feeling and got in the car and drive to Florida to see what was going to happen. I arrived and after many surgeries and 40 days in the ICU my dad walked out of the hospital. During this time I was there my only symptoms were digestive issues and nausea. I ate a little just to have energy and I slept a little when I wasn't by my dads side in the hospital. I stayed in Florida until July 1st. So between April 20th when my dad got out of the hospital and July I had some extreme symptoms. I developed a fast heart rate upon waking in the mornings along with extreme nausea. Every single night I could fall asleep fine but as soon as I opened one eye it was game over every morning. I had digestive issues all along this time as well. I developed a weird feeling like a hair was in my throat but no white covering on tonsils no swollen throat no pain. I began to feel extremely hot and had a slight weird red rash on my cheeks. Make up hid it well though. During this time I was in Florida I was supposed to be helping my dad recover and spend time with my family as I had been away for 4 years and only saw them for a few holidays and random short trips. I felt useless I couldn't do anything. I didn't even want to walk the dog with my dad around the little block. I felt like I would pass out and fall. I had extreme pain in my thighs. My organs felt huge. I continued to have IBS like issues. Mucus in stool, constipation and soft stools alternating. I took pepto bismol way too much. I also took a lot of zofran and looking back that could have caused the constipation. Between may and July I made some trips to doctors looking for answers. I started at a walk in clinic asking them to test me for h pylori. No go with that test. I had the dr feel my body he didn't feel a single thing swollen. I was disappointed with this visit. Blood work all fine within normal limits. Next I went to a GI doctor. Because of the pain on my right side he wanted to send me for a hida scan of the gallbladder but I had no other symptoms of those issues. I never went for the scan. He gave me some type of omprezole for my issues. No help from this place either. Next up was a psychiatrist I maybe thought with the stress of what happened to my dad I was going crazy and I had permanent anxiety. I was told I had something happen to me as a child and given some anti depressants in the 30 minute consultation. Thanks but no. I knew this was not the issue. I never took the anti depressant but I did take the hydroxyzine they prescribed. It helped with some nausea and helped me sleep a little. But they only gave me 7 pills. Next stop was the hospital again. More blood tests. All within normal range except maybe the liver enzymes which showed a few points above normal so again no one thought anything of it. My heart rate was elevated when I went in so they took a chest X-ray. It was normal. They thought maybe a blood clot because of the weird pains I was having but ruled it out with a d dimer blood test or something of that sort. Again no answers. At this time I was going insane with this feeling of doom. I asked the ER doctor if it could all be caused by my impacted wisdom tooth. They said no and took a look at it anyway. Gave me some ridiculous strong antibiotic because I could have slight pericornitis (where the gum grows over the tooth a little) it didn't hurt and I thought maybe this was not my issue but it was worth a try. The antibiotic ruined me. Amox clav I think was the name. I think it contributed to the rash on my cheeks. Then more symptoms started to pop up. My left cheek felt tingly. Again I went into panic mode. Such anxiety I had these months. I googled and googled all day everyday. I self diagnosed myself with cancers, brain tumors, heart problems, and other insane illnesses. Looking back I think my salivary glands were infected. As mono attacks them. So still no diagnosis. I was putting off driving back to Texas (home) because of the long drive and thinking I would never make it alone. I honestly thought I'd end up dead on the road if I went. I had some slight headaches around my ears behind them. Specific points on my forehead hurt to touch. Very weird feeling. My joints hurt, my muscles hurt. Everyday was a new symptom. I felt so hot. I couldn't deal with the heat of Florida summer the humidity the 90+ degree heat. I felt like I was going to keel over. The brain fog was ridiculous. I couldn't watch a 30 minute show on tv even. Had no intention of watching it or following along, nothing. Eventually I sucked it up and drove home. I got back and had gained my appetite back a little but not much. At this point I had lost 50lbs. I needed to lose the weight but not this way. I was 240 when this all started and had some bad eating habits and not exercising and working too much made too many excuses for me to not be healthy. Besides the point...I made an appointment with a GP and another therapist. I was still feeling off. And had some weird pains in my body. I think I was over sensitive to every little thing I felt in my body. A hangnail = cancer at this point. I was losing it. The GP did a head to toe exam and sent me on my way with some herbal bs. No blood work because I had told her I had 3 blood tests March, may and June and they were all fine. So waste of her time and mine she decided. I saw the therapist. He tried to help me think positive and I told him all my doom and gloom feelings of something being wrong. If anything he was the most helpful because I can be negative sometimes and he taught me to think differently in everyday situations at work and so on. So I got something out of it. Right after seeing the GP I developed a real physical symptom. I was elated. I finally had something I could show someone. My tonsils were covered with white patches. Except no pain. I told my husband to take a look. He's a doctor by the way LOL. This whole time he told me I'm anxious. He didn't once think it could be any disease I asked him about or anything else. He told me I had cryptic tonsils. And to leave them alone. Ok so the white stuff went away. My left tonsil blew up. Still no pain. It felt like I was swallowing it. I started to salivate a lot more than usual and he said it was maybe an infection but didn't want to give me antibiotics. Could be viral. So fast forward to now. September 20-whatever day it is. My left tonsil has just started to shrink. And the one and only lymph node that popped up under the tonsil is getting smaller. When that one did pop up I was convinced I had lymphoma. It was there from about the first week of August till now. I would say as of today my symptoms are mild mild nausea but not everyday. And I have gained some appetite back. I can eat 3 times a day now and eat crap I shouldn't. I have pain in my chest in one weird spot on and off. Seems to flare with stress. I still get a little fast heart rate sometimes but not noticeable like before where I could see my chest jumping basically. Or imagined it because of the anxiety. I have had more normal days lately than bad ones. I just went to Vegas and walked miles and miles up and down the strip and feel fine. I'm still trying to take it easy though. My husband wants to go to the gym. I don't think I'm ready. He thinks I'm still depressed and anxious for whatever reason. He never once went along with what I was trying to say about any illness. He blew off the tonsil as nothing to worry about. I mean I trust him. He looked at all my blood tests and if he felt something seriously wrong in my body he would have told me obviously. The feeling of my spleen and liver being huge though is something I can't describe and maybe he didn't feel it at the exact times I felt like it was enlarged. My theory is that this mono has been acting up based on stress. The thought of losing my dad put me over obviously during the time from march till July being home with him was just an unhealthy time for me. I was so stressed and worried. I didn't allow myself anytime to recover because I also didn't know what was wrong with me. I tried so hard to do things. It got to the point I wouldn't even go to the grocery store with my mom. I wouldn't get out of the car to go to the redbox stand even for fear of collapsing on the ground. I didn't tell my parents how truly bad I felt during this time. I didn't need them worrying about me on top of the medical bills and my dad's health. I tried to play it off and even downplayed the symptoms to my husband because I was getting no where with any test or had nothing physical to show for this. In all I think this has been a long virus. Whether it's ebv or cmv I don't know. I will go back to the doctor eventually and suggest a igm igv whatever antibody test one day and see if it shows I've ever had the hsv type viruses these are. But until then I think I'm ok now. The tonsil still scares me but it's shrinking and I don't feel like it's going down my throat anymore. Obviously I'd go to the doctor if this doesn't resolve in another few weeks or whatnot. But I can relate to all of these posts where people have said they have felt this way for months. For me, 7.5 months is where I'm at. I could have written all of these posts describing all of these symptoms. I hope I don't relapse. I'm trying to keep stress levels low. Work part time. Rest more than anything even when I want to go out and do stuff I'm choosing to stay home and hang out for now. I truly feel like I've lost part of my life from this it was awful and I'm glad I'm feeling a little better each day but to think about it I have to measure it in how far I've come. Not day by day. I feel better this month than last. This week has been better than last week etc. it's been a long process and I feel like I'm finally healing.

I know this was long but it honestly is just a short account t of how this whole ordeal went ....

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8 Replies

  • Posted

    I forgot the trip to an oral surgeon for a consultation on my tooth. I had some weird jaw pain and thought it was my wisdom tooth for sure. He told me most likely all the symptoms were not from the tooth and offered to remove it. I didn't have it removed there. Back in Texas I went to another dentist and had a panoramic and X-rays done. I was convinced the swollen tonsil was from the wisdom tooth. They extracted it. With just Novocain. Obviously this didn't absolve me of all my symptoms. So I went thru this for nothing it seems. But hopefully since I had it removed it doesn't have the chance to cause me problems one day lol. And one more symptom I had while in Florida was a canker sore on my lip. It happened the same time I took the amoxicillin clav and disappeared within 3 hours. Very strange. And once back in Texas I got a yeast infection probably because the antibiotics destroyed my gut. They were so strong. I totally blanked this out of my head for some reason but I wanted to let everyone know I had these symptoms and issues as well.

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    • Posted

      Hi Brianna,

      So sorry to read about this terrible time you have been through the last 7 months or so, that is awful I just really hope and pray things get better for you. It sounds like a nightmare, not sure if I missed it or not in your message but did you get a blood test to check if EBV or CMW was present? Would definitely recommend asking your doctor to do that, and even if you have had mono it could be that the EBV is not showing in the blood test now because it's been a number of months since the initial symptoms and illness.

      Just want to reassure you I had mono and it took me a good while to recover, similar to you I worried about all sorts of illnesses. Try not to if you can (I know it's hard), sometimes this virus can just make you feel totally wiped out, and you have been and had checks from your doctor so if it was something to really worry about I believe they would have picked it up by now - so give your mind a rest and try not to worry if possible, or don't hestiate of course to go back to your doctor if you are unsure (although I know it's tiring and wearying to keep doing that especially if you feel like you're not getting anywhere).

      Hang in there, try to remove stress and worry as much as possible, give yourself some time to rest and recover as sounds like you've been through a real ordeal, don't read horror or scare stories on the internet - I fully believe you will recover without any shadow of a doubt, just been a bad spell in your life. I had mono when I was 25 and the first year was really tough but then things started to get much much better, so if it were to be that I believe you have weathered the worst. Maybe good idea to take a good multi-vitamin every day and maybe something like siberian ginseng or echniciea or a herb like that to help boost your immune system, also plenty of vitamin c and vitamin d can do no harm at all to help build your strength back up.

      Thinking of you and just hoping that a turning point is just round the corner - there is hope today Brianna and I really believe you will get through this and get better.

      Take care

      Craig

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    • Posted

      Thank you so much for the kind words. Today has been the first day where I've felt almost 100%. It's been a crazy ride. I believe I'm on the right track im taking a B complex and a C and a D for vitamins right now but will prob switch to a multi one for more benefits. I have read the horror stories it's definitely crazy and when I don't have that anxiety I start to believe I'm getting better and I start to feel ok. I'm glad you recovered and I expect to, one day. smile

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  • Posted

    Thank you for sharing.  It helps me sooooooo much to know that others are going through the the same horrible illness.  I was diagnosed with EB (mono) the end of Dec 2015.  My doctor caught it right away and send me home to bed.  I can relate to most of the symptoms you have described.  My liver enzymes were elevated for 8 weeks and I had severe pain over my liver.  That has resolved.  

    I am still very anxious--in a way I have never been before.  I still am avoiding social situations except for my immediate family. I am only working 1 day a week--I used to work full time.

    sending you healing prayers!

     

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    • Posted

      I had stopped working from February until August. While in August I still was having pretty rough symptoms but not as bad as it had been. In mid August I went back to work full on 40+ hours a week. It has been wearing me down and I can tell. I've let off a bit and cut back to 30 ish and working Monday thru Thursday's only for now. I find getting up at 7am everyday is killing me as opposed to getting up at 9-10am and moseying into work on my own time. I definitely see how rest plays a huge role in this illness recovery. I'm glad your liver is ok and you are doing better!! Thanks for sharing.

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    • Posted

      Just a word of caution about working too many hours a week when feeling how you've been Brianna, try not to overdo it and give yourself the time to recover. It's good to hear you felt good yesterday, that is really positive. And there's no harm in taking Vit C, D and B Complex with a multi-vitamin too, just check the maximum daily dosages for Vit C and Vit D when doing that but generally you should be okay to do that, I do that too.

      Hang in there - still fully believing in your recovery Gerbear and Brianna and thinking about you today. You WILL get better!

       

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  • Posted

    Just an update. I've been feeling pretty ok the past couple of days. Slight aches but the come and go quickly. I stayed up until 3am and got up for 7am to work and felt very tired the past two days. So again I want to stress sleep and rest. I also feel like my digestive issues have been under control for a few weeks now. I know whenever that gets messed up it could take months to resolve. And it did. 7 to be exact basically. I felt a tiny bit nauseous this morning but it went away within ten minutes. I have forgotten what normal feels like so when I do feel good it's scary lol. I was thinking of taking monolaurin. Does anyone have any words of advice or opinions about this? Would it have only helped in the acute phase?

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    • Posted

      Hi Brianna,

      I don't know anything about monolaurin or what it is, but the striking thing from your message is going to bed at 3am and getting up at 7am! A fully fit and healthy person would struggle with this let alone someone recovering from a nasty virus!! Definitely try and give yourself a more regular sleeping pattern, at least 8 hours and often more for those feeling poorly with glandular fever is important I'd say.

      Thinking of you and just slow down a bit!

      Craig

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