16.2 Encephalitis: PATIENT PERSPECTIVE with Alex

[00:00:00] Hey everybody, I'm super excited to have my first patient interview. It is with a really

[00:00:08] really good friend of mine, long-term friend, Alex Jolly who had a very scary incident with

[00:00:16] a 36-48 hour change in personality and behavior that ended up prompting this entire series

[00:00:25] on encephalitis as one of those occult causes of altered mental status, aka change in behavior.

[00:00:35] And it's really intriguing to me because I've seen some of these patients with a medical problem

[00:00:41] who may end up on a psychiatric unit. Luckily that did not happen to Jolly and he has done

[00:00:49] quite well since his incident, but he was interested in coming on and talking about his experience.

[00:00:58] So I hope you enjoyed the patient perspective. If there's any other patients out there that

[00:01:04] would like to offer their unique perspective then it's something I'm certainly willing

[00:01:09] to do more of moving forward. Hope you enjoy our conversation. Thanks.

[00:01:17] Somebody get this guy some help.

[00:01:26] Alright, so today I have on the podcast my good friend, long-time friend, Alex Jolly.

[00:01:34] And for the first time actually we are giving a patient perspective on a topic that we're covering.

[00:01:41] So we were talking about encephalitis and one of the things that kind of piqued my curiosity

[00:01:48] or repeat my curiosity was the fact that a couple of months ago Jolly, who I call him Jolly,

[00:01:58] had an experience with acute onset of viral, we think viral encephalitis with a rapid deterioration

[00:02:09] of his mental state and his level of consciousness to where you don't really remember a whole lot of it, right?

[00:02:17] No, I don't. It came on very quickly. There's like a good six hour window of symptoms that popped up

[00:02:25] and it pretty much fades to black very quickly. Yeah. Very, very quickly. Yeah.

[00:02:33] So my sister-in-law, my wife's twin sister texted me and a mutual friend of ours and was like,

[00:02:42] have you heard from Jolly, which by the way they live in Denver, Colorado and we are in Louisville,

[00:02:49] Kentucky. So that was very strange in and of itself that she was asking if we'd heard from you

[00:02:57] and set off a lot of alarm bells. 100%. This is also news to me. I actually never,

[00:03:02] I mean, we're two months down the road here and I those three days are still gone.

[00:03:08] So anyway, she said, you know, I can't get ahold of him. He's supposed to be at home,

[00:03:14] but the pound just called me and they said that our dog is at the pound, which set off a lot

[00:03:21] of red flags because you love Larry. I do. I do. He's our sweet little Ozzie,

[00:03:27] my little baby boy. So I would never leave him really anywhere. Honestly, he travels with

[00:03:33] either myself or Carly everywhere we go. He's never left alone. So the idea that he would be

[00:03:42] missing or get a call from anybody, there's something yeah, that's gone very sideways.

[00:03:47] My first thought was that you were being held against your will, most likely by the police.

[00:03:52] If for no other reason that it was just such an abnormal weird presentation like

[00:03:59] course, it was hard to imagine how you would have gotten yourself into that situation on a early

[00:04:04] and a Saturday afternoon. Friday is when all this started for me. Friday is when it started,

[00:04:12] but the call, the text came in on Saturday. Saturday. You may not even remember Saturday at

[00:04:17] all. I don't know. I don't. So Saturday because Saks and I were playing in a golf

[00:04:24] tournament and we played our whole day. And then we both saw that we had texts from Carly like,

[00:04:29] have you talked to Jolly? Where is he? What's going on? And it's like, I don't know. I'm in,

[00:04:34] I don't know how many miles away it is, but many miles away 1500 miles away. Yeah. But the story

[00:04:39] that I got was that, you know, I'm asking about well, what's going on before all this.

[00:04:46] And after our, my step sister-in-law who lives in the same apartment complex as you,

[00:04:53] after she went to check on you, she was like, yeah, he's okay. Like he's not hurt,

[00:05:00] but there's something off about him. And so I'm like, well, does he look like he's intoxicated

[00:05:06] on something? She's like, no, but he just like is really nonchalant about everything. You know,

[00:05:12] I told him about Larry and he was like, okay, go away. I'm sleeping. I'm, you know,

[00:05:17] and it just wasn't making a whole, you didn't understand the gravity of the situation

[00:05:22] and how worried everybody was. But then I started asking, well, what's been going on the days before?

[00:05:28] And the first report I get is, well, he hadn't slept in three nights. And he's been extremely

[00:05:34] anxious. And of course the psychiatrist is thinking, okay, 35 years old, kind of late for

[00:05:40] your first manic break, right? But there's some elements that match up with that. You're,

[00:05:45] you got no insight. And actually when people are full blown 100% manic, and there are levels to

[00:05:53] mania, but the way that I describe it to patients is the light bulb of consciousness turns off

[00:05:59] completely. And people who have full blown manic episodes will, they won't remember the things

[00:06:04] that happened or what they did after the fact. Sure. So that was like, because you were so

[00:06:11] resistant to getting any help and you had no insight, and they gave me that piece about not

[00:06:16] sleeping. I was like, okay, maybe that's what's going on. Right. But anyway, it was like, hey,

[00:06:23] we got to get him to the hospital. Yeah. And you were very resistant to that.

[00:06:28] Highly resistant to the hospital. This is also, so unfortunately it goes back to my demeanor

[00:06:34] in general of like, I'm not one to ask for help. So even being tapped out subconsciously,

[00:06:40] I'm going to tell you everything's fine and leave me alone. Yeah, is exactly what I'm going to do.

[00:06:46] So that stage of step sister finding me talking to me, I have zero recollection of that. For me,

[00:06:55] this all my lights faded or turned almost completely out on that Friday before anyone

[00:07:02] else. Yeah, on there like I might have been talking, but I have no memory of Friday at all.

[00:07:08] So what is the last thing that you do remember? So not Friday evening, I should say.

[00:07:14] So my memory on what happened to me was I got off from work on Friday. Typically,

[00:07:22] the dog goes to the shop with Carly where she works and I'll pick them up when I get off work.

[00:07:27] I'll take him to the dog park. So I drive there after work three, four o'clock in the afternoon,

[00:07:33] grab him, take him to the dog park. When I got over to see Carly,

[00:07:36] I pointed out that I had a rash. It looks like some sort of allergic reaction happening on both my hands.

[00:07:45] It's like little pimples that just broke out on my hands. So I pointed that out to her.

[00:07:53] That was weird backstory on me is I'm in construction, so it's very likely that I picked

[00:07:59] up insulation, fiberglass got in there. I get cuts, whatever. So I didn't think much of it.

[00:08:06] I pick him up, take him to the dog park around that time. This is Friday, right? Friday morning.

[00:08:12] Yeah, Friday morning. I pick him up and go to the dog park. Second symptom shows up then and it's

[00:08:21] my skin. All of it heads to toe is pins and needles to the touch. Like everything hurt,

[00:08:30] picking up the ball to throw with him. That felt like pins and needles. Petting

[00:08:34] him felt like pins and needles. Getting back in the car to drive back to the apartment,

[00:08:39] sitting in the car seat, pins and needles on my back. But from getting in the car with him to

[00:08:46] drive back is when my lights start fading out. So I don't remember the drive back to my apartment.

[00:08:55] I wonder if you ever made it back into the apartment with Larry?

[00:08:58] I never did.

[00:08:59] Okay, so you just made it into the stairwell and then you on autopilot went back to your apartment,

[00:09:05] which by the way is really interesting that even in an unconscious state, you knew how to get

[00:09:13] your homing devices were still operating. You knew how to get back home.

[00:09:18] And then it sounds like at that point you were feeling pretty bad even though you didn't feel

[00:09:25] it, right? But you were feeling pretty bad and tired and completely laid down. And I guess you

[00:09:31] really slept pretty much 24 hours, 12 hours. It must have been because again this is all before

[00:09:40] I was aware of anything completely before anybody else even Carly, right? So I guess maybe she

[00:09:45] worked late. So I think she worked late and she'll have to get a test of this because

[00:09:51] we've talked about it but we've talked about bits and pieces. I've pieced together some from my brother,

[00:09:58] Carly, step sister, all of this. The other side of this too is I haven't pieced all of it together

[00:10:04] because it's pretty rough to hear for my side of like she's like do you want to know what

[00:10:10] happened? And I kind of like I just don't. I want to get through this and figure out and

[00:10:15] move forward. I haven't pieced my own full story. She can piece a lot but I haven't pieced my own.

[00:10:21] Well let me know if you don't want me to piece something together.

[00:10:25] No, please, please. You can piece it together. It was more so very early on with this happening.

[00:10:31] I didn't want to know because it was just like it's just scary. Honestly, you turn your,

[00:10:38] like to me, I woke up on Monday. Like I got off work Friday and the next thing I knew is I came

[00:10:46] to Monday and looked at my phone with calls from work of everyone worrying about me and that's,

[00:10:54] to me, it was a weekend so I didn't know what anyone wanted. You're like why is everybody

[00:10:58] at work bothering me on a Saturday afternoon? Like leave me alone. It's nice out. Yeah.

[00:11:03] Yeah. So anyway, you know the situation escalated but you were so resistant and obviously your

[00:11:11] behavior was the lights were out and I didn't know why because between Saturday and Sunday,

[00:11:18] I mean I'm going crazy over here trying to figure out from afar like what could be going on

[00:11:24] with you and trying to emphasize the need to get to treatment but also realizing if this

[00:11:31] was a psychiatric issue and somebody came to pick you up, they can't force you into the ambulance

[00:11:38] completely without you being in a completely altered state and I didn't know if you would come off

[00:11:44] like that to somebody. So it's interesting you say that so of my bits and pieces that I

[00:11:51] come to the best way I can equate this is and maybe some of the listeners don't have this

[00:11:58] but it's like when you get blacked out drunk and it'd be the equivalent of you get blacked out drunk,

[00:12:04] you don't know what happens. You got food somehow you made it to your own bed in that state. You

[00:12:09] kind of have a you know if you're drinking called a brownout where you come to for little bits of

[00:12:15] pieces. It was it was that so I think that timeframe leading up to it. I guarantee I was

[00:12:22] beyond resistant to anyone helping me. It was just leave me alone because that's very much

[00:12:28] who I am. I'm just like I'm fine. It's that so whether you can believe it also sarcastic which

[00:12:34] doesn't help yeah in the slightest if someone's actually trying to help you because something

[00:12:38] is wrong but uh yeah I guarantee I was resistant but I do know when the ambulance did come and

[00:12:49] the EMT got there that when they came in that they woke me up because I woke up to

[00:12:55] I don't know nine nine people with flashlights shining on me. I remember that I remember waking

[00:13:02] up I remember putting clothes on and then them saying well asking the question of how many drugs

[00:13:09] have you done what drugs have you done and you need to come to the hospital and I remember

[00:13:15] basically like on cruise control got up put shorts on that in the bed and got the ambulance with them

[00:13:22] that being said in the ambulance the last thing I remember is freaking out in there and then

[00:13:30] them strapping me in and then it turned face to black again yeah yeah um and and again the

[00:13:37] situation escalated when from from my understanding um Maddie step sister-in-law went over there it

[00:13:45] was like something's not right but it doesn't seem like anything is like immediately acutely

[00:13:52] dangerous like you were dying or anything right um you know I told her to like check your your

[00:13:57] vitals at least your heart rate and make sure you're breathing at a normal rate which

[00:14:01] yes rules out certain like intoxications um but she was just like clearly something's not right

[00:14:08] and then your brother came over right and again just the the nonchalantness about the situation

[00:14:15] was the most concerning thing and I think at one point you were walking around your apartment

[00:14:24] without your clothes on 100 and and that was like okay this is not

[00:14:29] jolly behavior at all not like the little brother was very upset by that one yeah yeah yeah I could

[00:14:36] see you isolating in a in like a moment for like maybe half an hour an hour but but then kind of

[00:14:42] popping your head back out but like that was just locking yourself in the in the closet don't

[00:14:47] remember that yeah uh they were trying to get you to go to the hospital and you were like

[00:14:51] I'm not going and you like yourself in your closet again just resisting and not understanding

[00:14:58] what was going on um but shortly after that they did get you to the hospital and when you came out of

[00:15:06] the the the little window of lucidity there yeah uh apparently they had to strap you

[00:15:12] to they'd use physical restraints yes um and so here is the aspect that one of the reasons

[00:15:19] why it piques my curiosity professionally with what I do because I've seen this before

[00:15:27] and it is a prime example of a way that somebody can not get the treatment that they need sure and end

[00:15:33] up just being shuffled into the psychiatric unit yeah um because you're you you did not have these

[00:15:40] obvious um signs of something medically going wrong sure uh you know to the untrained eye it was

[00:15:47] just primarily behavioral changes but like such drastic behavioral changes in such an acute

[00:15:56] timeframe that that would tell me that something had to be going on but it's so lucky like I am so

[00:16:02] glad that you got the workup that you did when you got to the hospital yeah and you got like a full

[00:16:08] neuro workup you got a lumbar puncture within hours yep they couldn't do an MRI because you were

[00:16:15] I woke up in that one yeah that was later but you were thrashing all about

[00:16:19] they knew they wouldn't get a good one they should have put you down with some

[00:16:23] at a van or benzo but I thought I remember asking the guy when I was in there because I can't

[00:16:29] that's a weird place to come to to come to yeah in a tube yeah not cool um I remember asking him

[00:16:39] um if I was fine and he was like yeah you were just kind of out laying there

[00:16:43] and then he was like full on panic sat in and I was like yeah because I'm now I'm talking to you

[00:16:48] right like you can tell that I'm there now but you know that was a very quick stint and it was back

[00:16:55] out again it's like the voice of god in the MRI machine you're like where is this voice coming from

[00:17:00] maybe the magnet's pulled it out of me yeah but you got a you got a full workup it didn't

[00:17:05] they didn't find much they didn't find anything specific your EEG uh the thing where you put

[00:17:11] a bunch of the little stickies on your head that measures your electrical activity in your

[00:17:15] brain I believe I was very resistant to it showed that there was some abnormal brain activity but it

[00:17:21] didn't specify exactly what was going on and so they did uh you know what's called a broad spectrum

[00:17:28] treatment they started you on antibiotics in case it was bacterial they started you on the really

[00:17:34] the only antiviral that has any real effect in encephalitis which is against the the family of

[00:17:42] viruses called herpes viruses which again are also typically associated with behavioral changes

[00:17:51] which we still don't know why that virus which lives in our spinal cord we don't know why it migrates

[00:17:55] right instead of the normal route out to the skin into the brain yeah um but you got started on

[00:18:04] that stuff you were also started on anti seizure medicine in case you were having

[00:18:08] some odd form of seizure activity right and within 24 hours maybe even a little bit less than that

[00:18:17] you were coming back to so tell me about what it was like to come come back uh

[00:18:25] come coming back was really weird because it was I I came to consciously to where I kind of stayed

[00:18:33] conscious and I was actually coming back um it's very odd because I don't know how I ended up in

[00:18:38] hospital I don't know what my mom was doing in there reading a book um when I came came back

[00:18:46] into it was just my mom in there which Carly can tell you this as well um and it shows that my

[00:18:53] my brother and parents both know how hardheaded I am to go against that is I woke up um super

[00:19:00] congested and couldn't breathe and basically told my mom I need to get out of here would she allowed

[00:19:06] me to leave um to where I think Carly spoke with her afterwards and said and her response was he's 35

[00:19:16] he's can do I can't stop him uh which is a fair response with you know she raised me she's seen

[00:19:23] enough of my nonsense uh to allow me to do that but I did leave I did walk outside I did try to

[00:19:30] rent a scooter um I tried to rent a lime or a bird scooter I had my phone with me it wouldn't open

[00:19:41] tried to ride it anyways and um if you know anything about the bird or lime scooters that

[00:19:46] are laying all over cities they don't unlock unless you unlock them I tried to give it a go fell

[00:19:51] over the handlebars left it on the ground walked right back into the hospital pretended like nothing

[00:19:58] nice um but coming back to his wild I mean it was I mean it was uh besides that congestion moment it

[00:20:07] was just kind of like you're waking up and trying to put a puzzle piece back together it's my best

[00:20:13] way to say it is like you get blacked out one night and you're like I don't understand how

[00:20:18] I ended up here it's exactly like that this just so happens to be two and a half days later 72 hours

[00:20:24] later or whatever it is um which is even crazier um but yeah it was it was wild I came to with multiple

[00:20:31] IVs in my arm um and EKG whatever on my chest yeah uh immediately went to rip those off don't advise

[00:20:41] that those do not feel good to rip off especially if you have chest hair especially if you have

[00:20:46] chest hair because I was patchy for a minute um but yeah it was um it was just interesting

[00:20:54] because I had no recollection of what yeah what just happened and how much time had passed and

[00:20:59] yeah and so you got to the hospital I believe it was early Sunday morning slash Saturday night

[00:21:06] sometime in that sure uh window of Saturday night to Sunday morning and the city of Louisville

[00:21:13] was on pins and needles I believe so just waiting to hear what was going on because you know you were

[00:21:20] 48 hours from being your normal self right um and then you know I was low-key freaking out about it

[00:21:29] because you're one of my best friends you're probably gonna be my brother one day probably

[00:21:36] related at some point and um and me having the the professional training and experience

[00:21:44] knew how severe this was right um and how serious it can be in terms of my brother that

[00:21:52] in terms of yeah well I didn't know what the hell was going on at that point right right um

[00:21:58] but even you know if you were manic that's what I was saying I don't know if he's manic

[00:22:02] they wouldn't even you have a video of you like I was trying to get more information but I was like

[00:22:06] either way it's a very dangerous state to be in right because as as the similarity there is that

[00:22:12] you're operating based on impulse completely the animal brain the animal mind is doing its thing

[00:22:20] and the human part of us our frontal lobe which says no maybe I shouldn't say or do that

[00:22:25] was not functioning uh no zero chance that was functioning yeah um so it was such a relief to

[00:22:33] talk to you on pretty early on Monday and and you one of the first things you said is uh

[00:22:39] I don't remember talking to you to be honest with you yeah on Monday uh no I don't so I knew that

[00:22:46] you had come back I'm sure you talked to so many people that too and we're in and out of sleep

[00:22:52] and getting used to being on Keppra like yeah trying to ride scooters all sorts of right right

[00:22:58] right yeah but one of the first things that you said to me classic jolly fashion was you were like

[00:23:04] so uh what are we doing for this bachelor party our our other uh brother-in-law future

[00:23:12] brother-in-law uh was is getting married actually later this week and so we were both planning

[00:23:17] on going on the bachelor party yep um so that told me that you remembered and like

[00:23:24] you were back to your sarcastic still there you know normal self yes um but you you knew that

[00:23:30] you were in the hospital you knew why you were there obviously you were confused and it was a

[00:23:34] total mind fuck oh for sure because I think at that point of talking to you because I don't

[00:23:39] remember that conversation but I guarantee I came to him was like I had no understanding that

[00:23:44] three days had passed yeah had zero understanding of that I just assumed it was the next day right

[00:23:50] and we would continue with our plans as usual so looking back had there been other signs or

[00:23:58] symptoms that maybe were related to that did you have any insomnia or was your anxiety worse

[00:24:05] um no the anxiety hasn't been bad uh I mean before yeah yeah yeah leading up to this whole

[00:24:12] thing uh and anxiety wasn't bad um no really really at all I was just in uh motion of changing into a

[00:24:21] new job but no anxiety there I'm pretty excited about that one um and then as far as insomnia goes

[00:24:28] I wouldn't necessarily say insomnia uh but the biggest thing that I've battled for the last

[00:24:35] uh few years is is lack of sleep it's due to having a deviated septum I broke my nose and I was a younger

[00:24:43] kid I don't sleep very well uh it also doesn't help that you know started using aphrine which

[00:24:50] you know takes away any congestion in there oddly enough no one tells you that that stuff's

[00:24:57] comically addictive and when you start it use it for a week or so basically you have to continue

[00:25:03] on I never thought twice to just continue it on so um a lot of times I wake up uh three four five in

[00:25:10] the morning or something like that fully congested you have to take that just to open up your airways

[00:25:15] just to get back to sleep yeah so I wouldn't necessarily say insomnia but that is a massive

[00:25:22] detriment to getting into your rim cycle and actual actual sleep yeah yeah so essentially

[00:25:29] like you maybe deal with some uh what's called like mechanical sleep apnea yes related related to a

[00:25:36] functional physical deformity in your nasal cavity that unfortunately so both uh both sides are shaped

[00:25:43] like a snake from the friend and family perspective I think that you have a much greater appreciation

[00:25:52] when something like this happens completely for how much you love and care about that person

[00:25:58] not to get all sappy with you but please but I mean you know I think every one you know there's

[00:26:04] a bunch of us playing in a golf tournament here on sunday yeah and I don't I can't speak to how

[00:26:09] others were feeling but you know I've been up most of the night like trying to figure out what

[00:26:15] the hell could be going on with you right and just going down fucking rabbit holes yeah on my

[00:26:20] phone you know um and then sunday yeah I was out on the golf course not at all into playing golf you

[00:26:30] know like I'm checking my phone between every shot and that's trying to get updates and devastating

[00:26:35] to hear but I very much appreciate it yeah it was such a relief to talk to you and for for you to

[00:26:40] have that rapid response right um which to me kind of lifts up that it was probably viral in

[00:26:46] nature right um what has it been like fucking emotionally having gone through that like it's

[00:26:55] a life-changing experience yeah I um when you go through it that first week out I didn't think

[00:27:02] too much of it because I'm trying to figure out internally what happened with no knowledge of

[00:27:07] really what just happened to me but it it takes a few days to realize that you lost a few days

[00:27:14] um and then knowing that there was something in there with friends trying to help that maybe

[00:27:21] maybe if I didn't have friends or if they were out of town or something else was going on I don't

[00:27:25] know if I would be here um so I'm super lucky to have them find me to get through it all to be

[00:27:33] okay um yeah so it gives you a much deeper appreciation of I had life in general because

[00:27:43] it's not like this was doing something extreme and you had an accident or you know something that

[00:27:51] you're in control of and an accident happens um this just happened out of nowhere there was

[00:27:57] nothing that I know of that led up to it um the symptoms that I saw early on I never would have

[00:28:03] guessed would have ended me in a hospital it was never even something I weighed on it just

[00:28:08] thought it was like huh might be tired could be this or that but yeah to go down and wake up three

[00:28:14] days later it's yeah it gives you a whole different perspective of how quickly life

[00:28:20] and everything can change on you yeah and I mean I knew and I kept this one close to the vest

[00:28:28] that it carried a somewhere between of like five to 20 percent mortality rate perfect with with

[00:28:34] these infections and so again that you know when you take into account your age and the the specifics

[00:28:41] about how long you were out uh the risk probably wasn't that high with you but in general knowing that

[00:28:49] it's like that gives me another perspective on this yeah it's crazy right right right um

[00:28:54] and so you actually ended up going home on Tuesday afternoon yep because as as you kept getting

[00:29:01] the antiviral and the anti seizure medicine you got better and better they stopped the

[00:29:08] antibiotics right or did you take them you took them for two weeks or a week yeah I stayed on the

[00:29:13] antibiotics for I want to say 20 days vancomycin and yeah yeah uh that that was the only one

[00:29:21] unison yeah broad broad spectrum covering every every type of bacteria that they can right

[00:29:29] right right um but you went home on Tuesday so you would think that with how great our

[00:29:39] healthcare system is that when you have a condition that carries a five to 15 or 20

[00:29:45] percent mortality rate right that you would be maybe even be kept in the hospital on Tuesday

[00:29:51] sure probably should have been kept in the hospital and gotten an actual MRI that showed

[00:29:57] whether or not there was any obvious damage to those uh you know lobes or those those parts of

[00:30:02] your brain yeah and but no you went home on Tuesday and then tell me about trying to get a follow-up

[00:30:12] and how that impacted you emotionally and anxiety wise anxiety wise off the charts

[00:30:20] emotional I'm a bit a touch on the numb side to it yeah not much emotion but anxiety though

[00:30:28] not expressed emotion yeah not expressed emotion I think you feel the emotion but you just don't

[00:30:32] express it yeah you know like yeah that's yeah I'm similar I'm similar in in some ways um

[00:30:38] yeah so it was really interesting it's been um you know the I think the hardest part in this is that

[00:30:46] at the time I didn't have a primary care doctor um I've gone through other medical stuff uh surgery wise

[00:30:56] being out there but I've never had a primary care doctor I don't know if that's a stubbornness

[00:31:01] whatever it is so you know I kind of I got out of the hospital I had

[00:31:08] the viral meds and then my anti-seizure medication that I was on and then they you know

[00:31:15] they release you with a packet of instructions on you know finish uh your anti-viral meds once

[00:31:22] that's out you're good no need for this here's your uh seizure medication which the seizure

[00:31:29] medication was a 30 day supply uh with a half refill so 45 day supply um but no real instructions

[00:31:39] on if 45 days was stopped taking it or not so you know I get out of uh the hospital 30 days go by

[00:31:50] I take all my meds I go get the refill at that time is when I realized that I only had 15 more days

[00:31:56] of it I never really thought too much of it that being said I'm also recovering from a

[00:32:02] brain injury so there's not a ton of thought going on throughout my days my day is very

[00:32:10] kind of still is now but it was very day today it's like take my meds in the morning take my

[00:32:16] meds in the evening you know hydrate eat right sleep that's kind of all I'm really doing this

[00:32:23] first month it wasn't until about a month in uh that I reached back out to the hospital

[00:32:30] multiple times trying to get in touch with somebody absolute struggle to speak with the doctor that um

[00:32:39] was my primary care while I was in there never got to speak with him spoke with a

[00:32:44] physician's assistant uh once asked them for more instruction on it and their instruction was

[00:32:51] essentially we can't do anything else you need uh to talk with your primary care

[00:32:56] which turned into an absolute scramble to find somebody did you tell them you don't have a primary

[00:33:03] care I did tell them that that they're they were like well there's plenty of options out there it was

[00:33:08] a pretty blanket statement and you know basically the equivalent of millennials just saying just

[00:33:15] google it it was that kind of an answer yeah which I'm not going to say anything bad about

[00:33:20] uh Denver Health being in there because honestly they were great the nurses were great but

[00:33:24] post treatment any instructions afterwards is just kind of left you in the dust and you have to figure

[00:33:30] it out on your own I got lucky enough that I found my now primary care doctor uh who's awesome took

[00:33:38] me in uh and he's also a doctor that's uh no insurance it's all out of pocket but I went with

[00:33:46] him because when I spoke with him the first time he's very much on the mindset of I'm going

[00:33:53] to spend time with you when you book an appointment so I went with him first time I met with um via

[00:34:00] telehealth it was an hour and 45 minutes call that call alone was enough for me to be like you're my

[00:34:08] primary care you're everything I needed went in and saw him uh three days after that telehealth call

[00:34:16] because he got me in super quick saw him did a full check out he spent an additional hour and

[00:34:21] half with me uh it was a morning appointment I was also late for that appointment called him

[00:34:27] I mean he didn't even flinch at it he took me right in no issues um walked me through

[00:34:35] everything he had received from the hospitals which was a nightmare to get that paperwork

[00:34:40] sent over to him oh yeah um I would have to check on them now if they even sent it to him but

[00:34:47] they they have to protect your health information right right even if it kills you even if it kills

[00:34:52] me and they have to protect it from another doctor which I find beyond fascinating it's it's great

[00:34:59] you know they used to just keep the medical records in on the the ground floor of the hospital

[00:35:04] and anybody could go and right medical students could look through them and of course you know

[00:35:09] your family could look through them of course but sending it via email is uh that's wildly

[00:35:15] problematic yeah um so I honestly I gave him my medical records via my chart login so like my

[00:35:24] chart.com but my personal login I was on the phone with them well yeah I was on the phone with them

[00:35:30] I gave him my pass my my ID my password password then you know they text me for your two-step

[00:35:37] verification I was on the phone with them I gave it to him via the phone that's how he got all

[00:35:41] my information I can't tell you how many patients I've been like do you have the labs on your phone

[00:35:46] with you right now right let's look at him sitting right here or else this may never happen

[00:35:52] and you know that phone call of 60 seconds for him to get access it's just for me to log

[00:35:57] him in on my account um because for some reason they wouldn't allow him to even set up an

[00:36:03] account on my chart because he wasn't an in-network doctor which is even crazier to me.

[00:36:12] Jimmethy! Yeah, him completely um yeah so I logged him in he went through it um you know

[00:36:22] that three day time period four day time period between the first time I talked with him

[00:36:26] and actually see him in person he spent that entire time he went through every single bit

[00:36:31] of my records all my blood work all the MRIs he could everything so I sat down with him and

[00:36:37] he went through it based on the abnormalities he saw on the EEG scan he um he was like you do need

[00:36:45] to stay on um your seizure medication in the meantime until we can get you in for neurology

[00:36:53] the neurology appointment is a whole different animal. Yeah how did that go? I know that was

[00:36:58] the original question so I'm sorry for the roundabout there um but it that just felt like

[00:37:05] that's a the backstory of Vildom nonsense so neurology has been an absolute nightmare to get

[00:37:14] in touch with now I'm on the outside looking in I'm not in the medical field that's a very

[00:37:20] specialized field of medicine can't imagine a lot of people being in it that being said from

[00:37:27] time of my release to my appointment is uh roughly 105 days was that my first opening

[00:37:35] and if you didn't go out on your own and seek out a primary care right then you would have to run

[00:37:42] the risk of stopping your Kepra correct and just seeing what happens correct right correct yeah

[00:37:49] yeah I would have 100 had to stop because I would have no way to access it yeah

[00:37:55] unless I would go back into the hospital and explain to them what happened but even then I

[00:38:01] don't know if they would be like oh sure we'll just write you a new prescription because I called

[00:38:07] and asked for that same thing yeah no and I had three different connections to Denver uh

[00:38:13] Samaya trained with in psychiatry is out there somebody else in anesthesia and then a medical

[00:38:20] student that I worked with who I've known personally for a long time did actually uh neurologic research

[00:38:27] out there before he went to medical school and struck out yeah left and right complete strike

[00:38:33] out on that and then who what's the doctor that does readings for MRI readings or EEG oh yeah

[00:38:38] because we were talking about just seeing if we could get an MRI and privately and then have

[00:38:45] a radiologist read it we had we had that route and then I went another route with two of my other

[00:38:51] friends out there one of which is fantastic he literally called in all his I'm calling him

[00:38:59] country club favors because that's how he knows all these guys to one of the top radiologists in

[00:39:05] Denver and had one other favor for a neurology appointment but that busted they were also

[00:39:12] three four months out but I had the neurologist or the radiologist friend of a friend he called me

[00:39:19] he reached out he did give me some good advice that like time is your your best friend here for

[00:39:25] healing and you should be okay in the meantime my primary care said the same as well but he got

[00:39:33] me on a cancellation list for one of the top neurologists in Denver but that you know that

[00:39:43] cancellation list that I got on that was six weeks ago now and I haven't heard a peep from them

[00:39:48] I followed up with them for two weeks almost daily to try to get an appointment and see if

[00:39:55] there are any cancellations saying I'm available uh and nothing yeah absolutely nothing yeah that's

[00:40:02] that's just crazy yeah um yeah I don't know what else to say about it uh what's your primary care

[00:40:09] doc's name uh michael benoit michael benoit shout out to michael benoit who was aware of

[00:40:18] lithium's anti herpy virus uh was um effect yeah or its ability to inhibit the uh

[00:40:26] herpes virus from replicating yeah which I was astounded by because I who knew I would say

[00:40:32] there's probably one to five percent of primary care docs that are aware of that yeah he's he's a

[00:40:38] good one he's very um I don't want to call him a holistic type doctor but much more that route

[00:40:45] of the idea of if you want vitamin c there's no reason to take vitamin c as a supplement you

[00:40:52] should just eat an orange right he uh prescribes subscribes to that yeah ideology and thought

[00:40:59] process um yeah so I you know for for something as serious as like a brain injury he felt like a really

[00:41:06] not being a neurologist just being primary care that holistic approach on vitamins and intake

[00:41:13] feels like such a good way to go about the healing process after this whole thing happened

[00:41:17] yeah he seems like he at least tries to practice the way that I do he's not not anti-medicine

[00:41:24] by any means not at all um and understands the benefit but he also recognizes not at all he wrote

[00:41:30] my kepper prescription right right but he also recognizes how the system operates and that it's

[00:41:36] very easy to get into an an overtreatment over medication correct um place with with so many

[00:41:43] different patients sure um so I'm very glad that you found him same um so yeah I mean essentially

[00:41:50] like you're kind of still in a little bit of limbo like there's not an obvious answer now I will say

[00:41:57] there are two other factors we haven't discussed that I'm by no means an expert in this I mean I

[00:42:04] know about it I have read about it I've seen it a couple of times um I don't know it inside and

[00:42:12] out and there's probably a lot of nuance that I don't appreciate about it but there were two

[00:42:16] other things that uh to go with when you're talking about being feeling like you had pins and needles

[00:42:21] everywhere yeah and you experienced that but then also uh I was told that you said multiple times when

[00:42:30] you were in your your blackout state that your skin was burning I I have no recollection but it

[00:42:39] doesn't surprise me knowing uh how I felt prior to like the heavy symptoms setting in yeah

[00:42:45] of being on pins and needles yeah um and then interestingly Tuesday afternoon because it also

[00:42:51] explains why I was walking around my apartment like that yeah yeah yeah um that does make sense

[00:42:57] that does make sense to just because you didn't care about social norms not in the slightest you

[00:43:01] just cared about getting your needs met that was it which uh it's a very childlike state it goes

[00:43:07] back to like the basic necessities yes how do I keep breathing if I've got a uh eat and drink

[00:43:14] and if I'm hot how do I get cool if I'm exactly so on and so forth yeah exactly um but the other thing

[00:43:20] when you came home Tuesday and it was so it was so wild because you know I'm reading all these case

[00:43:27] reports on different forms of encephalitis and um I really kind of had a very strong suspicion

[00:43:33] that it was a herpes virus because you had the rapid response and because you didn't you never

[00:43:40] had a fever like you would tend to get with a bacterial cause right um and you you would probably

[00:43:47] have more symptoms with the bacterial cause more uh brain swelling so with uh when you got home I

[00:43:53] literally had just read a case report on shingles or the varicella zoster virus which is in the

[00:44:00] herpes family I don't know why it's not called herpes simplex whatever um but it was a case where

[00:44:09] woman had broken out in a rash kind of in the middle of treatment or after treatment and it was on her

[00:44:16] neck in a dermatomal or in the you know there's nerves um that correspond to different parts

[00:44:23] of your skin interesting and so with the shingles rash it it lives when once you get chickenpox

[00:44:30] the the virus goes back into the spinal cord like other herpes viruses yeah and then it will

[00:44:35] break out at some point again if there is any uh like a thing that is affecting your immune system

[00:44:43] and so if you get your immune system knocked out acutely temporarily um or from some chronic

[00:44:50] cause then you can have reactivation of that most typical in older people to have the reactivation

[00:44:56] um but you get this dermatomal rash and it's very very painful but what you had that night somebody

[00:45:07] was like oh yeah he had some rash on his neck and I was like does it hurt no it doesn't hurt it's

[00:45:11] just just popped up I'm like show it to me it looked almost identical to the case report

[00:45:18] of course in the c3 dermatome and I'm like okay and since I've talked to some other people

[00:45:24] they said it's not like it's not for sure sometimes you can have the the uh of semi reactivation which

[00:45:33] it wasn't a real reactivation because you didn't have a pain it's usually a very painful condition

[00:45:37] but it makes me wonder did putting those factors together the skin burning all over um is it is

[00:45:45] it related to the varicella's ostor or not in the rapid response to what a gansychlovir

[00:45:52] the antiviral anyway all of that just to say um you're still in a little bit of limbo

[00:45:57] little bit of limbo it would be nice to have every answer of course and have everything tied up that

[00:46:03] rarely happens in medicine but um we're yet now with that limbo compared to where you were in

[00:46:10] the first couple of weeks the best way for me to describe it is just like it's just a car with

[00:46:15] a tank of gas and it I just hit emptier earlier than I typically have so my first week out it was like

[00:46:23] you got 24 hours in a day I've got a good two hour window where I felt normal you know middle

[00:46:29] of the afternoon 12 to 2 and I just felt normal then it's a crash ever since um you know that

[00:46:36] first week I've progressed I'm just calling it hour by hour where I feel back to normal

[00:46:41] back to energy levels has progressively gotten bigger so I feel great as far as progressing on

[00:46:47] that front it still leaves me in a weird limbo of like I see the nerve uh I see my neurologist

[00:46:54] on September 13th I don't know necessarily what's gonna happen then am I gonna stay on the meds

[00:47:01] I don't know is this a forever thing is this a one time thing do if I have to get another

[00:47:07] EEG or MRI what's that gonna show yeah it's a touch scary on that front but from a uh I don't know

[00:47:16] from my life moving forward perspective perspective I feel good I feel like things are moving in the

[00:47:22] right direction and I can head back to full normalcy you know here yeah here shortly it's kind of

[00:47:28] like a double-edged sword I mean on one end you don't know exactly what happened and you may

[00:47:32] not have that answer but on the other end I would imagine just you know not I guess fully experiencing

[00:47:39] it yeah consciously but just knowing that you had a brush with death yeah what does that feel like

[00:47:47] um you know it's kind of like I said earlier in the episode of of and some of the things

[00:47:52] that you brought up that I didn't know happens like walking around my apartment with my skin

[00:47:57] on fire yeah news to me um you know I don't know if this is the healthiest way to go about it but

[00:48:04] it's kind of something that I've pushed onto a back burner or tried not to think about it all

[00:48:13] it's one of my personal ways of coping with serious things like that typically it comes out

[00:48:20] as sarcasm as you know you know ignoring it or whatever so yeah I haven't thought you know a ton

[00:48:27] about it I'm very grateful for where I am now but I haven't spent a lot of time looking back going

[00:48:34] besides you know being home now and bumping into other people and being like yeah I almost died

[00:48:40] two months ago yeah excluding that which when I say that it does come out sarcastically

[00:48:46] yeah which is my internal coping mechanism there um I don't think about it a ton I'm mostly

[00:48:53] I'm trying to keep a glass half full and move forward and be positive yeah I think it's

[00:48:58] I don't I think there's something to uh a positive mindset you know helps internally

[00:49:06] somehow on a health health reason it's a positive defense mechanism to suppress some things when

[00:49:12] when you just don't have the information right right and I mean you're kind of in that limbo

[00:49:18] state you're waiting and it's like okay I'll put that out yeah um but what about the fact that

[00:49:24] yeah you could have died and you didn't does that does that have you had any kind of like

[00:49:29] positive spin off of that idea like if you got into a huge car accident and came away unscathed

[00:49:37] you might you know really have a new lease on life sure um you know I can't say for sure

[00:49:45] you're the first person to ask me that in the last two months since this has happened um

[00:49:52] well we gotta find some positive because our minds love to just focus on the problem and

[00:49:57] all the negatives yeah yeah um no there's there certainly is positives but it again it's not

[00:50:03] something that I'm like I'm trying to keep my day by day half full and not so much dwell on what happened

[00:50:10] two months ago yeah um not that I'm trying to completely forget it and suppress it out of my

[00:50:15] memory even though it was pretty suppressed for it you know on its own for 72 hours yeah um

[00:50:22] not trying to do that but I just there's something in my psyche that is you know focusing on

[00:50:30] today's positives and moving them forward into tomorrow it that keeps me driven to where I don't

[00:50:37] know what's going to happen in a month seeing neurology I don't know what's going to happen in

[00:50:41] a year but maybe the better maybe the maybe the the the more obvious benefit or positive

[00:50:48] behind the experience is do you worry as much about things that maybe you worried about before

[00:50:55] that just don't seem that important now yeah quite a bit because life can disappear very very quickly

[00:51:05] when you're not doing anything but I mean I was just walking around and have something like this

[00:51:11] happen yeah it gives you a completely different outlook that you know life's precious short

[00:51:21] and you know we're a touch out of control as well which is it's tough to accept maybe that's

[00:51:29] what I'm trying to get at that I'm kind of have a lot of acceptance in that yeah um because I didn't

[00:51:35] have any control over what happened to me at all yeah that and this is not the same experience

[00:51:42] I didn't experience it directly but when my brother died suddenly unexpectedly of a cardiac

[00:51:50] condition um yeah I mean there were panic attacks there were especially because it was a

[00:51:57] familial potentially genetic familial thing sure um and again because of what I did I knew that the

[00:52:04] genetics were kind of 50 50 of whether or not I would be affected yeah if it was a genetic

[00:52:11] cause of the the cardiac condition sure um and it was pretty miserable for a while but

[00:52:18] then there was something that I distinctly remember like hey I'm here and I might not be here

[00:52:25] in the future like I better fucking go live my life yeah right and not get caught up in all the

[00:52:32] bullshit that right we can tend to get caught up in no that you know I haven't taken a step

[00:52:39] back to look at it that way because I you know obviously I knew you and we were very close back

[00:52:45] then too when that happens um for you but I personally haven't had family members or anyone

[00:52:52] super close to me um I guess there's some friends in there um but you know typically it's I've

[00:53:00] kind of had that still look at death that it happens with old age and that's the end of

[00:53:05] the story so I haven't taken a step back to look at it of you know it's more how it affects others

[00:53:14] and if it did happen to someone else maybe it's a touch selfish of me um at the moment but most

[00:53:22] of our thoughts are about ourselves most of our emotions are about you know uh perceptions about

[00:53:29] ourselves or what other people are doing and how it relates to us yeah it's um yeah I don't know

[00:53:35] I'm living a very very uh kind of a narrow mindset and it's I don't want to call it selfish because

[00:53:44] like I do care about the people around me and surroundings and stuff but it's more that my life

[00:53:50] right now is very day-to-day and my only way to get through it and get to the next thing

[00:53:55] is half full that's it we'll see what happens with the next thing and continue on from there

[00:54:02] yeah yeah and I mean it really is like uh you and I have talked a little bit about um

[00:54:07] act and and actually we talked about relational frame theory I don't know if you remember the

[00:54:13] the chimpanzee and the baby depends on when you talk to me about this it was at that uh

[00:54:20] when we were getting breakfast when we were out in the mountains oh yes remember it was a

[00:54:25] really good conversation oh yeah we talked about the you know the a b c d phenomenon yeah

[00:54:32] with babies and chimps and now both babies and chimps recognize a reward when it's given when I

[00:54:39] pick one choice of course based on something that's shown to me right so the option is an

[00:54:45] A or a B is shown on a screen when the B is shown if the chimpanzee or in a separate room the one

[00:54:52] year old right picks C over D they'll get a reward right and it trains the person it's a direct

[00:54:58] contingency it trains them to uh when B is shown pick C and the baby and the chipper no different

[00:55:03] there but the the major difference in how our minds work or how our brains work is when

[00:55:09] you flip that and you show the C or the D on the screen without any additional training

[00:55:14] and then you give them the options of picking between A and B when C is shown on the screen

[00:55:20] the chimpanzee does not make any connection or relation between C and B but the human mind

[00:55:28] makes this automatic um or unconscious recognition that when C is shown if I pick B I'm more likely

[00:55:38] to be rewarded and almost always picks B whereas the chimpanzee is like 50-50 right so it is this

[00:55:45] ability of our minds to relate things together which is part of the reason why we're all dealing with

[00:55:52] way too much information significantly and minds that are able to generate so many different

[00:55:59] relationships and possibilities yeah and our mind is like an animal's its focus on survival

[00:56:05] and identifying not just problems but potential problems right so if I watch a video of um somebody

[00:56:15] being involved in a road rage incident yeah it seems benign enough with me watching it

[00:56:21] but then later when I'm out driving I may catch my mind playing out this scenario of road rage

[00:56:27] and how I'm going to react to it yeah what what is the impact of all of those little

[00:56:33] micro stressors or micro insults on our overall health and definitely our mental well-being

[00:56:40] the butterfly effect of that tiny little decision yeah what could be different yeah

[00:56:45] and if you think every bit of new information or experience is bouncing off of all your previous

[00:56:51] experience right shit you're talking about astronomical amounts of possibilities that are

[00:56:56] mostly unconsciously going through your brain but then the subconscious the unconscious will reveal

[00:57:02] information it thinks is most relevant or pertinent to your survival sure to that conscious part of you

[00:57:09] I don't know where what I'm where I'm going with that but I'm not sure either but fascinated

[00:57:14] yeah um yeah I don't know I don't know well all in all dude I I love you man and I am so glad that

[00:57:24] you are okay I know that there is still you know investigation to be done and a journey

[00:57:33] to travel in terms of your your actual biologic medical well-being and then recovering from a

[00:57:40] mental health perspective from such a big event in life yeah um I don't notice any obvious

[00:57:48] difference in you I think you've mentioned that your your your gas tank like you said it

[00:57:54] runs out a little bit earlier but I don't notice any difficulty finding words or any difficulty

[00:58:01] know that pressing yourself for change drastically and your emotional state or anything like that so

[00:58:07] that all seems to be there it's it's funny that I um oddly enough I feel calmer yeah I don't

[00:58:14] necessarily know why unless that's some introspective subconscious thing of you went through a

[00:58:21] traumatic experience yeah and just kind of taking your tempo maybe it just destroyed your amygdala

[00:58:27] a little bit in the right place it could be that you basically dirtened yourself yeah I might be a

[00:58:36] um yeah it you know honestly like it was just it was a struggle the first couple weeks but I feel

[00:58:43] like I'm coming back more and more that my only real gauge of things is if I don't get enough sleep

[00:58:51] uh I won't you know it's like filling up a gas tank if I don't sleep enough I'll get

[00:58:56] of a four-hour tank that day um if I get enough like I got enough last night I'll have like a

[00:59:03] 12-hour tank today once that ends my real telltale sign is uh is stuttering so the word recall doesn't

[00:59:11] come as quick I'll start stuttering through some words um I feel it coming on right now if I'm

[00:59:17] being honest yeah um there's been a bit of it that I can hear myself it makes me very like

[00:59:23] I'm very conscious of it uh I don't love that but well I stutter anyway doing these podcasts

[00:59:29] because I uh you know yeah I get that um but yeah that that's really the only thing so I appreciate

[00:59:36] that I feel like I'm progressing yeah um yeah my only my only add-on to the recommendations would be

[00:59:43] just what I was just saying I mean the mind doesn't doesn't insert the positive things

[00:59:50] sure and I really truly believe that it is up to us consciously to make ourselves and our minds

[00:59:59] aware of any positives that may exist in any given situation I mean from you know losing a loved one

[01:00:06] and and recognizing why you even feel like shit because of that right this stuff has to be inserted

[01:00:13] consciously so you know people talk about it and it sounds cheesy in a lot of ways but it

[01:00:20] I think it really is important to have those gratitudes that again it seems silly and I

[01:00:27] struggle to do it myself sure um yeah I think we all do but when I think about it in terms of

[01:00:32] more just tipping the scales to more even if you think about what your mind is doing right versus

[01:00:38] you know what you're consciously doing you're not faking it till you make it you're just

[01:00:44] recognizing the things that you agree with that are actually have some some benefit or some positive

[01:00:50] to it yeah so it's a good way to say that um all right well any uh final words

[01:00:59] final words on this one stay positive I think there's a big benefits of that outside of that

[01:01:05] just be conscious of what's going on with your body you know be aware of it yeah yeah and um

[01:01:12] yeah if if you lose your mind go to the hospital please do that because it might be more serious

[01:01:19] than you think yeah yeah yeah absolutely yeah all right bud well I appreciate you absolutely come on in

[01:01:27] here I appreciate it thanks again for watching and or listening if you're passionate about the

[01:01:37] subjects that I discuss on the channel do me a favor and like comment subscribe do whatever you can to

[01:01:46] make your voice heard that these are problems that must be addressed in our society if you have any

[01:01:54] questions comments or concerns I want to hear them feel free to reach out on social media

[01:02:01] or email us at renegadescyke at gmail.com and if you'd like to be a guest of the show or you

[01:02:08] have a connection to somebody that you think would be a good guess let us know thanks again for

[01:02:15] listening