I've survived encephalitis (so far). Anybody else? Need humor. Brain is healing...

[Jax]

Since this is not a sports-related injury per say, I decided to post this here in the padded room versus gimp central. Plus, this injury has left me a little more mental (I think), so this is fitting perhaps. Or maybe that's just the steroids talking. A friend was generous to start a Go Fund me page for me while I was in the hospital, she has since given it to me so I can post updates on what is going on. It's pretty complex to say the least. Long story short I am undergoing treatment for lesions on the brain, the primary one on my brain stem...

Part of my latest update as I'm too tired to re-type:

"Hey everyone, just a little update. More tests back, I spoke with one of my neurologists today. We are continuing onward with Encephalitis as the primary diagnosis as the lesions responded well to IV steroid drip in the hospital. And if that happens it's either lymphoma or encephalitis based on my presentation.

I had mono as a teen, really bad, so that means I carry the Epstein-Barr virus (along with most of you, 95% or something like that, I just am having bad luck I guess), which can cause encephalitis. So here we are at the ripe age of 41, moving to my new house just south of Steamboat, prepping for trade shows, making stuff happen and then the virus caused an auto-immune response from my body to start attacking good things, mainly my brain. Oh boy did I ever get lucky just to be able to lay here and type right now.

We are running a few more tests to try and rule out MS without having a biopsy, but usually in this case only time will tell as each disease can actually cause the other. Paraneoplastic panels came back normal so we've ruled out Lymphoma thankfully. I have so much to learn just to understand the basic terminology...we've ruled out polio and the two tests (Western Blot and ELISA) for Lyme came back negative except for one IgM band. So in this case I will be making sure by sending some panels to a Lyme-Literate doctor for a third opinion.

I have three brain lesions, the primary one on my brain stem. There are a lot of motor skills that come from there including speech, balance, heart rate, breathing, swallowing, vision, thinking of the right words, memory, hiccups, state of consciousness, the list is long. I have two other lesions that are on my frontal and parietal lobes. Not sure of effect yet until things heal or scar. I've been using my left hand more so who knows. Long-term memory is good. But I'm a scatterbrain now and not anal-retentive like I used to be. Maybe that's a good thing? My short-term memory needs help. I can remember your name, but I might not remember what you just told me about the party you went to earlier in the week.

I have bad tremors from the steroids, among other things. My spleen and kidney are enlarged so I have to lay low. My muscles are wasting away since I can't do anything either. I need new glasses as soon as things die down but for now I have to wait as things seem to change daily. Pain for the head has been managed as well as possible. I have not had any more seizures so that's a good thing. Let's keep hoping the steroids do their thing and reduce the lesions or make them go away. This gives me the best chance at recovering as much of my old life back as possible in due time.

I miss my bikes and being able to run. Breaking a leg was so much easier than this! Fortunately I live in a place where beauty and serenity is right out my back door. One day at a time..

I am so thankful once again to be able to wake up and see the sun glaring, even if it's foggy in my head. Sometimes it gets a little more clear. Colors are more vivid.

Thanks to you all for helping me get through this 'brain fog'. I have love for each and every person I meet. This has changed my life. I remember my old friend Stevie, many of you knew him. He suffered a TBI for about a decade and long story short it eventually took his life. I miss him and can't help but think of him daily. I curse him out and talk to him all of the time asking what he would do.

Unlike Stevie, I now have what is termed "ABI", acquired brain injury. It will take some time to see what the long-term results will be, two years is a good baseline from everything I've read so far. Just know when I see you, I may look great, but things are a little 'different' behind the curtains. Trust me, the lights are still on..I've just changed...Some may notice, others not so much thankfully.

Again, I'm just happy to be here to put up a fight. I'm not done living damnit! Thank you SO much for putting my mind a little more at ease so I can recover and continue to get the word out about encephalitis. It's terrible and no two people have the same outcome. Recovery is a big question mark, always a moving target.

Hugs from me and my sweet pup Ullr. Thank you!"

Here's a link to the updates on my page: http://www.gofundme.com/jaxandullr

I can't believe how unbelievably tired i am. I am tired of researching so many links on the internet, freaking myself out. Will my vision recover? Contrast is crazy right now. Photophobia is real. I have another MRI in one month to take a looksie. I am looking at a long road ahead. I need speech and occupational therapy as I now stutter a bit. Words are hard to say on a whim. Physical therapy will commence at some point soon as well. Joints are weak. Immunity is zero right now. At risk of stroke and other maladies. I should have had that vertigo episode checked out years ago. Ugh.

I am not asking for donations, though buying me a virtual 'beer' would greatly help! But really, so many of you have humor and laughter to add to this. Anybody else go through with this or other brain injuries that were acquired, not necessarily by trauma? Crossword puzzles help me remember how to write, my handwriting has totally changed (though still better than a doctor or dentist). Heh.

[that dude who did that thing]

You've been handed the perfect excuse to pull a Brian Wilson/Larry Flint. Go to bed, don't get up for five years.

[Shredhead]

I wish you a speedy and full recovery.


I had a bud at CSU that got Encephalitis of the brain, from a snake bite near Steamboat, over thirty years ago.

[Jax]

From a freakin' snakebite? Holy shit. It seems there are so many unknowns and possible ways of getting this. Did your bud recover alright?

[Danno]

Jax, hang tough. And since this is the TGRZ, +++ vibes +++.

[KQ]

Wow - life is truly a roll of the dice. Best wishes for you. Stay strong.

[El Chupacabra]

Wow - life is truly a roll of the dice. Best wishes for you. Stay strong.

This, a thousand times this. +++++++++




... and, since you said you wanted humor, at least what you have is diagnosed, hopefully 100% treatable, and you'll be back to normal. Pio, OTOH...

You've been handed the perfect excuse to pull a Brian Wilson/Larry Flint. Go to bed, don't get up for five years.

[Jax]

lulz, at first I read it as TGR2 (like 2.0), then I thought, this is like TGR 10.1015.420

[Jax]

Well, we aren't 100% sure. Brain biopsy is the only way to know without a doubt. Fuck that! Too risky on the brain stem. And even if it's auto-immune, nothing to do but rest and cross my fingers. Crazy shit for sure.

[PowTron]

As I have said before you have a shit ton of friends that are close by to you...so if you need anything, please just ask! Keep kickin' ass and being so strong!

[Jax]

And apparently I forgot how to reply with quotes. FML.

Will try again.

[Jax]

As I have said before you have a shit ton of friends that are close by to you...so if you need anything, please just ask! Keep kickin' ass and being so strong!

Thanks mang. I forgot how many of you are still on here that have supported me the past few weeks. Sorry for any redundancy! Still...can't help but think I got it from my travels in MX...hence still trying to rule out Lyme in any case...I really need to get off the web.

[Danno]

As I have said before you have a shit ton of friends that are close by to you...so if you need anything, please just ask! Keep kickin' ass and being so strong!

This x1000.

[riser4]

Holy Fuck Sticks. Ok, so the one thing I had that was even remotely like Encephalitis really doesn't come close. Rest up.

Back in I think '99 something went around up here that caused the worst headache you could possibly imagine for about four days. My wife and I caught it and so did a handful of other folks. It was around the time West Nile and EEE started making news. No idea if that's what we had. My wife went to the ER/after hours clinic for it (I tagged along and got a 2fer because our insurance situation sucked right then). They didn't do anything except to have us take more Advil and Tylenol than is good for you in alternating doses every four hours. And rest. Which was good because lying still was about all we could manage. My PCP when I saw him a few days later said congratulations, you probably had Encephalitis. And lived. I don't recall any tests being done. But maybe they did test my wife. Not sure.

So not anywhere close. Rest up.

[Diesel]

Still...can't help but think I got it from my travels in MX...hence still trying to rule out Lyme in any case...I really need to get off the web.

Interesting. I don't think you've mentioned that theory to me in our emails, but it might make sense.

Heal up, sister, and keep fighting!

HJ (since you probably don't know my TGR alias, but you might recognize Luna (RIP) in my profile photo)

[Art Shirk]

Internet Stranger here, Jax. Thinking of you and generating some good energy to push your direction.

[that dude who did that thing]

Hey, Jax, I don't know what crawled up Chupa's ass, but I'm pretty sure you figured out my Brian Wilson/Lary Flint comment was a response to your request that you "need humor." I'm not the funniest guy around, but I try when it's called for, and with your situation, you've definitely earned an effort on our part.

I'll try again: Two guys walk into a bar. The third guy ducks.

(that's almost literally the only scripted joke I can ever remember, aside from a few Polack jokes)

[Jax]

Hey, Jax, I don't know what crawled up Chupa's ass, but I'm pretty sure you figured out my Brian Wilson/Lary Flint comment was a response to your request that you "need humor." I'm not the funniest guy around, but I try when it's called for, and with your situation, you've definitely earned an effort on our part.

I'll try again: Two guys walk into a bar. The third guy ducks.

(that's almost literally the only scripted joke I can ever remember, aside from a few Polack jokes)

I totally got it and wasn't offended in any way. I asked for it actually.

Diesel- had no idea that was your screen name, or maybe I forgot, but I did recognize Luna! RIP sweet girl.

Yeah, weird shit is going on with my head. Thing is, there is no way to test for enceph, similar to MS, they'll have to get brain matter out of my cold dead hands methinks... So much of what I'm dealing with is ruling out OTHER diseases to come to a better conclusion.

I guess with EBV and the fact I had mono puts me at like quadruple the risk of MS. This could very well be it showing it's ugly head, 'first flare' kind of thing. But nothing to do but wait for next MRI to see if a pattern emerges. At that point it's chicken-before-egg convo, won't really matter. So. Hard. To. Wait!

Thanks for the words and support guys, even from strangers this helps me. Being alert and being able to type and understand is crazy underestimated.

And holy fuck does prednisone fuck with me! Might as well be pregnant. With triplets. Or something.

[liv2ski]

Shootz, I hate reading stuff like this from people that have been here for so long and have the fuckin kool avatars. Always makes me appreciate what I have (my health). Wishing you the very best and the joke is:

Little Johnny's first grade class was playing "Name That Animal." The teacher held up a picture of a cat and asked, "What animal is this?"

"A cat!" said Suzy.

"Good job. Now, what's this animal?"

"A dog!" said Ricky.

"Good. Now what animal is this?" she asked, holding up a picture of a deer.

The class fell silent. After a couple of minutes, the teacher said, "It's what your mom calls your dad."

"I know!" called out Little Johnny. "A horny bastard!"

[riser4]

The past, the present and the future all walked into a bar together. It was tense.

[Meadow Skipper]

Get well soon, Jax!

A guy's driving down an old country road and he sees a farmer in his orchard feeding his pigs, but what he's doing is he's taking one pig at a time, holding him up, letting him eat an apple out of the tree, and then setting him down before picking up another pig and letting him eat an apple. So the guy pulls over and walks up to the farmer and he says, "Wouldn't it save time to just knock all the apples on the ground and let the pigs eat them all at once?" And the farmer, confused, looks at him and says, "What's time to a pig?"

[El Chupacabra]

My apologies to Pio and Jax. I misinterpreted Pio's post.

[GeezerSteve]

Hang in there, Jax. Are you on Decadron or another steroid? I am nearing 2-1/2 years after brain surgery, got a bit of ABI myself (and no right side vestibular), went through Decadron Hell and subsequent taper. The steroid side effects suck, but better than the alternative Big Sleep. Yup, the crossword puzzles were, and continue to be, great therapy for rewiring the brain. There is life after skull fuck, for me it's a pretty good one, and I wish the same for you.

[adrenalated]

I saw this one on here one time...

A duck walks into a bar, jumps up on the bar, and asks, "Hey bartender, got any grapes?" Confused, the bartender says, "No, we don't serve grapes here." The duck hops down and leaves.

The next day, the duck walks back in, hops up onto the bar, and says, "Hey bartender, got any grapes?" Slightly miffed, the bartender responds, "No, like I told you yesterday, we don't serve grapes here!" Duck hopes down and leaves.

The next day, the duck walks back in, hops up onto the bar, and says, "Hey bartender, got any grapes?" Now the bartender is pissed, and yells, "I told you, we ain't got no grapes here! And if you come back in here asking for grapes one more time I'll nail your damn feet to this bar!" The duck shrugs, hops down, and leaves.

The next evening, the duck waddles back into the bar, hops up on the bar, and asks, "Hey bartender, got any nails?" "No," the bartender responds.

"Good! Got any grapes?"

[that dude who did that thing]

My apologies to Pio and Jax. I misinterpreted Pio's post.

I don't need hyour apology (though I accept). But Jax could use some good lulz.