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Stories = Unity

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This is a story – that means, grab a cup of Joe or 4 or 12 depends on your fatigue level – pop a Ritalin or you guessed it 4 or 12 again determined by your level of fatigue. Maybe take a shower in the middle of this or a 48hr nap ;). @#[email protected] take a week off work if you’re working (That’s what I’m doing).

Disclaimer - EBV has driven me slightly… no… no… absolutely crazy and… ;)

-My Intent-

Maybe someone will search something that shows up here and know they are absolutely not alone in the slightest. I'm going to make an attempt to be highly detailed. This has been my experience solely. The amount of symptoms expressed here may not match yours entirely. If there is anything I’ve learned over the last few months of research, it’s... EBV rears its head in some highly eloquent yet normal symptoms and other times it’s like… “I’ve had 1 to many at the bar – and I just need a porcelain god right now – get out of my way – where did my wallet go – what is the meaning of life – squirrel – should I get my haircut – lets go see a movie – why can’t any of you make a decision – I’m going home – where are my keys – squirrel – who are you? – And… you wake up on a park bench wearing nothing you put on the night before. ”. To sum that up, it’s as random as a drunk person trying to find their way through an entirely normal night using a simple fraction the amount of brain power they normally have whilst trudging through low levels of insanity – and you only have one shoe (Why that matters I’m not sure, but it does!).

You are loved, you are not alone, you will thrive once again, the world is and will forever be your playground, be a kid, laugh at yourself, do not cry, breath in and out, notice the sky, notice the stars, notice the life and love in all things. Most importantly, look in the mirror and say I love you.

-Let’s get started-

So 4 months ago I awoke with this odd sensation in my head - It was kind of like a headache, but it wasn't. There was also a bit of a crook in my neck - some slight pain almost like it was stiff. I thought I had just slept badly and continued through my day, thinking ah it'll get better after a good night sleep tonight.

Nothing really changed in the first day - low level pressure sensation (I would not describe this as a headache but more like literal pressure), coupled with the slight neck pain. I kind of just felt out of it.

I went to sleep that night with no trouble at all and woke up feeling refreshed in the morning. I remember waking up taking a deep breath and being like Ah! - All better. I zipped about my morning routine and I remember clearly standing in my bathroom brushing my teeth when, what I like to call now the Epstein Ping – Hit. The world for maybe 1-3 seconds went spinning (Visually almost like vertigo, the world was a kaleidoscope). That's all it took for my adrenaline to kick into high gear and my body to start dumping Cortisol like it was going out of style.

The effect was immediate – my hands and feet went all tingly and the pressure in my head hit like a ton of bricks. I remember the clear thought of “Something is undeniably wrong with me.” Followed immediately by “OMG!!! I’m dying… Holy @#[email protected]!!!!” then directly after that. “Call 911, Mom, Sister, All loved ones, the plumber (wait… what), no the doctor! - Your therapist, maybe your therapist’s family (really...), wait you still haven’t accomplished…. In your life.” I digress… I’m the type to flip when anything medical shows up in the slightest. I’ve had Anxiety issues around this in the past. (Most probably in the present ha-ha)  

I want to inject right here that my life outside myself was for all intents is quite stressful – I work in the IT field as a Network and System /  Developer / DB / Help Desk Support / Can you get this “electronic thingy” to just work for me please -  Administrator for a 70-80 employee small business here in Colorado.  I took it upon myself in the weeks leading up to this to start detail training in several areas of my profession and my relationship with the woman I love was on the fritz. I had a lot of thoughts traveling through my head daily that I was not good enough, coupled with the undeniably monstrous amount of work ahead of me. I was literally running through my days for a year without any downtown before any of this.

So the journey began,

I didn’t actually do any of those things I was thinking about, I told myself nothing was wrong – practiced some deep breathing and the tingling went away after about 5 minutes. I chalked it up to Anxiety and that’s where I lived per the many opinions of others including professionals for 3 and ½ months.

It’s all in my head,

Turns out no it $%^@#$# isn’t.

Getting into detail about those 3 months. After the first couple of days my symptoms were pretty consistent and continue to be 4 months later. I walked around in an Alien world. That’s the best I’ve got for yeah… sorry. Everything in my life was seemingly falling apart (It wasn’t, but I sure was.) I walked around every day with this relentless pressure in my head that made even the slightest bit of interaction with the world nearly impossible.

This is the best example of what that was like,

I’m about 3 weeks in at this point, sitting in my bosses office at work doing the best I can at understanding what he was saying (My intellect was nearly gone at this point.) I’ve got my eyes squinted as if I couldn’t see, but I could. I had turned my head a bit to better position my ears for the conversation. I was struggling to say the least. Sitting in the chair I felt almost like heavy liquid metal. Slightly like I couldn’t control my Muscles. Slightly like an elephant was on my head and chest. I’m trying to show up for the moment, but just can’t. At this point another co-worker walks into the scene. They start chatting and all of the sudden I realize I’m in the chair next to me. Well physically that doesn’t make sense. The best way I can explain this is that I’m watching my boss, co-worker, and myself have this conversation on a T.V. like it was a movie.

Continued to next post...
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Avatar universal
In psychology they call this De-realization. However normally you are not completely aware that it’s happening. Moving on, after noticing this – I just conjured up the most immediate thought I could, to get out of there “I need to leave, right now. I’m not feeling well.”  I stood up and… wait… nope… you don’t actually remember how to stand up on 2 feet… *crash*. There I was on the ground “What is going on!” I yell in my head. The decision for the E.R. was made for me and that’s where I ended up.

The usual was administered – some brain scans – some blood work checking for anemia. You guessed it I’m fine. “You should probably seek help with Anxiety”

Firmly in my head I say back “Yeah I know, but something is wrong you don’t understand.” – “Something is in my head, and it’s not me” (Had to toss in the Floyd… Common!) “It feels like I’m being eaten alive”

I kind of am…

Most of the professional opinions I got in the first 3 months were all chalked up to anxiety. They weren’t even really willing to run any tests until finally something undeniably physical showed up. Thank GOD.

I woke up about 3 weeks ago and my Lymph Node behind my left ear was the size of a large marble – The night prior I had had an allergic reaction to… you guess it the AIR. (I’ve not once in 27 years had an allergy… yeah… some sort of luck with that one.)

So I end up with my GP, she takes a look and is like “Oh, WOW” hahaha. I frankly said – “You know what let’s just run the gamut on me because I’m getting utterly sick of this. It’s ruining my life!” She responded... “Let’s do it”. However, she checked one more thing before sending in for Labs – she checked my neck and immediately was like “We’re running an Epstein Barr lab” My lymph nodes on my neck were huge also – both of them.

10 days later I get the results.

EBV Ab VCA, IgG – 27.4 (>24 = Positive… Not too bad)

EBV Nuclear Antigen Ab, IgG - 517.0 (>24 = Positive… @#[email protected]@#[email protected])

The best part comes next – What I get to do about it.

1. Sleep
2. Slow Down
3. …….

That’s it, that’s all I get to do. @#[email protected]# “You don’t get it!!! I live in America… That’s not possible” Frankly I was a tad bit angry – but at the same time found some relief in the knowing – that this is not in my freaking head.

So here’s where I am at the moment. 4 months in as of this little writing extravaganza. I’m taking a week off work – just to do it really. I don’t have expectations of this going away anytime soon. I’ve dropped all of my life projects. I’ve made a decision that this is not going to WIN. I am going to WIN. However the route to making it to Winning may not be what you’re thinking. I’m taking this week to learn how to Love my EBV to learn from it. I’m taking the perspective of… “Look, now I’m forced to slow down and pay attention.”  

I have tried all the Vitamins and Supplements with one more remaining – Liposomal Vitamin C, and they have all made what I’m going through excruciatingly worse in the 10x worse range. Crossing fingers on the C.

What’s working for me: I just drink a lot of water and coffee – cup for a cup pretty much. I have stopped taking all of my vitamins. I have started to relax and become more emotional. I have started a meditation practice. I take really HOT Baths to sweat things out…. And that’s about all that is working for me in the moment and the next one to at least manage.


Before I sum up – I want to recount everything I’ve experienced symptomatically around this.

I have chronic head pressure – at times it feels my head is going to explode. Pressure in ears. Feeling of liquid coursing through my head. I’m 24/7 tired and actively yawning. I get hot flashes and cold flashes. Sometimes I can’t breath – I have to get up and focus on breathing. My gut hurts on and off. My lymph nodes swell up and go down. My nose runs and runs and is constantly clogged. I’ve been getting Hives off and on. I never have normal stool – it’s either constipation or the complete opposite (I’ll save you from the description). I’m rarely hungry – force myself to eat. I stumble all over the place when trying to have a conversation. My memory has become terrible in moments of trying to recall something. I get random pings of vertigo. I get random tingling sensations throughout my body (Not ever in the same place). My bones and Muscles ache at random throughout the day. I get stiff neck – this is starting to subside after stopping all of my supplements. I at times can’t distinguish If I’m awake or still asleep. I have fallen asleep randomly throughout the day a couple of times. Sometimes I get a second wind right when I get into bed and cannot actually sleep (No matter how tired I was all day.) I have had one event of night sweats – however I’m constantly tossing and turning in my sleep. Enough to rip the sheets up. I don’t really enjoy the thought or action of doing anything this includes so much as walking around (However I force myself to.)

I generally have something new show up at random on a daily basis that is never the same as the day before. The amount of symptoms is entirely daunting and I did my best above. I will try to update that list as things appear new constantly.

All in all,

This thing is one hell of a virus – I cannot even remotely understand how it is not as big a deal as other topics of medical analysis.  

If you hear anything here this: You are loved, I am crazy with you.

-Dusten
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