My update with tips that I hope will help.

Posted , 5 users are following.

Greetings all.

I'm on month 4 of my mono experience. It has been up and down, but lately I'm having waaaay more up days than down. I haven't been on this site as much because I'm actually able to maintain a mostly normal life again.

I wanted to share where I am today to provide hope to everyone. I also want to share what I've done, in hopes it might help someone else.

Short version of my story: first mono symptom on 15 AUG 2018. My first week was not a super sick week. It was an "off" week, and 1 day that I thought I was over the viral infection they thought I had (did not test me for mono at that time). I remember well that I went shopping that Saturday and came home with a sore throat. From there, it was a dive to a really, really sick month. From there, I started having good days, then good weeks, and lately I've have about 3 weeks where I feel like my normal self, and 1 week where I feel a little off (but not horrible).

I've been back on a normal work schedule since the beginning of November and back to traveling (for work). I am VERY cautious around sick people, carry my anti-bacterial wipes everywhere, and wear a mask on the plane. I haven't received a flu shot, as I have polled many medical professionals and most of them advise not getting one with a compromised immune system. On the flip side of that, I have to be REALLY careful in public, as I do not want to get sick on top of mono recovery.

During my latest relapse, I tired easily (but still worked a normal day) and ran a low grade fever for a few days, but that was it.

I've gained all the weight back (and maybe an extra pound or two...lol).

I do not think I have any swollen nodes at the moment.

I have learned to know when I have a fever, even without a thermometer.

Stress or illness causes relapse. I had food poisoning about 2 weeks ago and it set off the latest relapse. The relapse only lasted a week.

My right ear still rings. Will this ever go away?

I still have floaters, but they aren't too bad, unless i'm looking at this white screen. LOL. I wonder if they will ever go away.

I am able to work out again, but not every day.

I have learned to listen to my body. When it says to stop and rest, I stop and rest. When it says to sleep, I sleep.

I had horrible insomnia at the worst part of my active mono. I actually solicited advise on this site, I was so desperate. It has gotten much better (only issues during a relapse).

I had anxiety just like all of you. At one point, it was HORRIBLE. I remember very well the night I had anxiety at it's worst, and I was sure I was dying.

To everyone: this WILL get better. My anxiety is close to gone. I'm sleeping so much better. I feel so much better.

There is one thing that doesn't seem to want to go away. I have a sore spot on my butt. It feels like I worked out too hard, but only on one cheek. Sometimes I wonder if the virus is living in that cheek. I've read some of what others have written and they seem to have sore spots too. I guess my sore spot just picked an odd place to hang out.

For those dealing with this awful situation, DO NOT be afraid to ask your doctor if you have concerns. My regular doctor saw me once and was out of town the next 2 visits. The PA acted like I was a psycho and dismissed me. She prescribed me anxiety medicine (which is not what I needed, I needed a diagnosis) and pushed me out the door. I had to go to an urgent care before they finally did a blood draw to diagnose me with mono. I never took one of the anxiety pills prescribed to me. I didn't want that, I just wanted to know what was wrong with me. I KNEW something was wrong, I just didn't know what.

Once I saw my regular doctor again, he said there wasn't anything they could do. It just had to pass. I went to a holistic doctor. At first glance, he said he was really worried about me. I never told him my diagnosis, he was able to figure it out just by feeling my enlarged spleen and other mono symptoms. He immediately started me on the following:

-Blackseed oil 2x a day (boost immune health)

-thymus extract (boost immune health)

-milk thistle (for liver/spleen)

-black elderberry syrup (boost immune health)

-2000 mg Vitamin C per day

-astragalus (boost immune health)

-Echinacea (boost immune health)

-passionflower drops (to help anxiety/sleep)

-sleepytime tea (to help anxiety/sleep)

These additions were on top of my mult-vitamin.

You must be careful about holistic doctors, though. This doctor came highly recommended from a trusted friend. He did not sell me anything, just did his assessment and wrote down recommendations. I bought all the products at the local vitamin shop. He also didn't ask me to come back at any certain day, but when I could. I've seen him 4 times now (which is about once a month), and each time he's run his test and determined I'm on track. I am not at all saying any of this will help you, but because I've done so well, I thought I should share.

Finally, I've scheduled a visit with my regular doctor in the next week to check my bloodwork and ensure this pain in my butt cheek isn't something to worry about.

This illness sucks, and sucks bad. We have all suffered, and I wish nothing more but wellness for all of you. I hope some part of my story helps others, because you have ALL helped me through this. It has been amazing to read stories so similar to mine, just to know I'm not crazy. Don't be afraid to see a doctor as much as you need to, if you can. I am blessed with awesome insurance and haven't gotten one bit of push back. I hope you all are, too.

I'll let you all know how the bloodwork goes in a week. Fingers crossed that all levels are back to normal, or at least really close.

xoxo, jen

1 like, 7 replies

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7 Replies

  • Posted

    how old are you jen if you dont mind me asking ?

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  • Posted

    i am so glad you are feeling better ! i cannot wait for ALL good days... im on month 8 or 9 now and its still awful so great to hear a good recovery story .

    im doing sooooooo many pills herbs eating healthy and still feel like crap ? i managed this up

    until month 5 when i got duagnosed i stopped working out and its all been downhill since then. i think if youre older it takes longer im

    52 all i ate was kale veg no bread no pasta ALL HEALTH! but still got so sick . i hear a lot of athletes get this and i was working out alot .

    keep us all updated ! gives us hope !

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  • Posted

    I thought I was the only one who had ringing in the ear!!! I also have had floaters from time to time, but most recently I have had such bad brain fog to the point of where I feel like I am living in a dream, I am so out of it!

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    • Posted

      Still thinking about you Madison, hoping for a settled day and week ahead for you - remember take things one day at a time, some of the supplements Jen mentioned in her post can be really good, especially for the brain fog and energy levels - things like B100 complex, co-enzyme Q10, gingko biloba, cayenne pepper, all things worth considering.

      You ARE going to get FULLY better from this Madison, even if it takes a little while don't panic, because you WILL get there - take it from me as someone who wasn't sure if they would either when going through this (and only did thanks to God!).

      Craig

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  • Posted

    Hi Jen,

    That was an amazing and heartfelt post that you made, and really awesome - offering real hope for those going through such a hard time with this - thanks so much Jen you are awesome!

    I think you've made tremendous progress in a short space of time with this, to get back to working is a great achievement, it took me much longer to do that - and these lingering symptoms, the ringing ear, butt pain, different aches and pains - I do believe that these are all going to get better Jen, remember it can be very normal for it to take a few months longer for everything to settle down and don't panic, because all the symptoms I do hope, pray and believe will subside and get better as time goes on.

    Sounds like some really good advice with the different supplements, some great ideas there for folks Jen!! And remember you just continue to look after yourself and not push things too hard right now, remember things can be zig-zag with recovery so if there are any tougher days / mini setbacks, don't panic because they will be temporary and will pass for sure.

    Absolutely totally agreeing about having no inhibitions and keep seeing the doctor and asking for regular blood tests, etc, just to keep on top of things. Although I know experiences with doctors can be so varied with this thing, hoping very much that everyone can have a good doctor to see, someone who is understanding about this illness and how debilitating it can be and how it can be normal to take a number of months to fully recovery from - some doctors all too easy seem to dismiss it and go purely by their text book that says after 6-8 weeks you should be fine! Not always and in my experience not mostly the case for many people with this, it can take longer but recovery does come so don't panic or be discouraged if that is the case - everyone will get there and make a full recovery with a little more time!

    Thanks again Jen and I know for sure I can relate to the anxiety / depression issues connected to this virus - hoping you are feeling more settled with this and remember it can take a little while to rebuild confidence and strength again after this - but it will come hang in there!!!

    Craig

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