I didn’t write this, but the website link is no longer working.
I posted this about a year ago, reposting for new members.
Lyme be Weird – The Twilight Zone of Neurological Lyme
The first week that I went from happy, functioning, not-sick Tara to holycowamIdying Tara, many bizarre and weird symptoms exploded, capsizing me in a downward death spiral into an abyss that I couldn’t even begin to explain to doctors. Yes, today, we explore the explainable Twilight Zone of Neurological Lyme.
Neurological Lyme, or Neuroborrelliosis, is when the nasty little bugs (borrelia spirochetes) that cause what we term “Lyme Disease”, infect the central nervous system (CNS). The CNS, in short, consists of the brain and spinal chord and assimilates information it receives from the body as well as directs and influences the activity of all parts of the body.
There is also the peripheral nervous system (PNS) that consists of the network of nerves and nerve communication through the… not brain and spinal chord parts of the body. I’m real scientific guys so stay with me. Below is a diagram.
There is also something called the Autonomic Nervous System (ANS), which is also so greatly influenced (damaged?) by Neuro Lyme that it deserves its own post. Coming soon guys… don’t you worry.
The progression of this disease in its late-stage becomes similar to that of neurosyphilis, which is another spirochetal infection. As with neurosyphilis, neuroborreliosis typically (but not always) occurs as a late-stage manifestation of Lyme Disease.
If you want to read an extensive list of common, easy to describe symptoms of this late-stage, go ahead and click on the picture below to expand.
Warning, it’s kind of boring, has words or issues you may never have heard of, and if you have never experienced it, it probably won’t mean much to you, but I would be remiss to not include it. I must be thorough, you know? Suffice it to say, when bacteria nestle in your brain and nervous system, stuff goes cray.
Ok, since that is out of the way. Time to get weird. Time to talk about the symptoms that don’t make it to that “General Symptom List”, simple because (my opinion here), there is no medical name for them. There’s no place for “internal buzzy-vibratey-motion-thingy-feelings next to something much more understandable like “dizziness”, despite the unexplainable being the bulk of my symptoms.
SO, when people ask me how I’m feeling or what my symptoms are, it is hard to say anything other than “not great”, “not a good day”, “okay” or the simple classic, usually stated as I grab on to something solid looking terrified, “ummm… I feel weird”.
But I had insomnia last night and I had this bright idea during the bizarre hours that encompass my insomnia to write about this, so here I go. This may fail miserably.
If you were to ask me, generally, what Neuro Lyme feels like, I would agree with Timothy Hutton, who played Charlie in the movie “Lymelife” (Charlie is basically a background, weirdo character with Lyme Disease who spends all his time either being weird or sitting alone in his basement smoking pot until he eventually *** SPOILER ALERT*** kills someone”.
Great press for us Lymies if I may say so myself. Annnnnyways, he describes Lyme as “a bad acid trip”. I’ve never done acid, but I certainly feel like I’m constantly on some kind of bad drug trip that never ends.
The English language gives me so little options to really relate what is the all-encompassing word that is “experience”. But I’ma try anyways. And I’m going to really, really try hard to not overuse the word “weird”, which I kinda think I already have. I have thesuarus.com open on a tab, so let’s do this.
You wanna know how I feel? You really wanna know how I feel?! You wanna know how queer Lyme can get?!?! Oh… no, that’s not right. Kooky? Funky? Thesuarus you are bad at this. Awe-inspiring? Are you kidding me? Okay guys, get over it I’m going to over-use weird. You wanna know how WEIRD Lyme can get?!?! YOU WANNA KNOW THE TRUTH ABOUT HOW WEEIIIIRDDD LYME CAN GET?!?
Actually, I’m the one who can’t handle it. The below is a sampling of what Neuro Lyme has been like, for me. I’m not going to talk about how I spilled my water glass seven times today because I have bad motor skills right now, I’m focusing on the Twilight Zone weird Lyme.
The kind that you hide because no one would understand you if you told them or doctors would prescribe anti-depressants/psychotics if you admitted them. I tried. I know. Your experience may be different. If you do not have Lyme and are just reading this for funsies, then, I guess… enjoy? If you do not have Lyme but are reading to try to understand someone who does, bless you, you wonderful supporter you.
Now roll that beautiful bean footage! I mean symptom bullet-list.
Within days of falling ill I developed this fun issue of not being able to lay back at any degree past 90 without beginning to black out. What. On earth. This wasn’t just “lay back and relax, breathe deep, don’t think about it Tara”, it would literally be lights out.
Seven months (and 2 months on oral antibiotics) later… seven months of living and sleeping hunched forward over pillows… this began to recede. And, 21 months later (and 1 year on aggressive antibiotics) I am just now fully comfortable sleeping on my back again or laying back on the couch like a normal person. I kind of side with conventional doctors on this one… “We don’t know how to help people like you”.
I had insane insomnia, weird insomnia. My brain wanted to sleep, but my brain wouldn’t let itself sleep. Again, this is not one of those “oh I was wired but tired” things, or I had to many thoughts and couldn’t turn them off. No, No. This is nothing like that. My body would begin to cross that threshold between awake and sleep, and then my brain would apparently interpret this as some kind of severe emergency or something.
My fight or flight reflexes would explode, I would be brought back to fully awake, complete with tachycardia, gasping for air, feeling like I am going to pass out or throw up or die. I would also stop breathing as I would begin to fall asleep, so maybe there was a severe emergency? Regardless, for months I would have to endure this back and forth torture dance up to a dozen times a night before I could finally cross the threshold and sleep. But wait, there’s more!
As I was falling asleep, I would also frequently feel a pulling sensation on my body trying to yank it upwards. But it wasn’t really on my body, it was like on my spirit or something inside of my body intangible to this world.
You know those old VHS movies where the tape would sometimes get stuck between frames and the image would distort? I felt like that was happening to my body. I would also have auditory hallucinations while this happened and would hear loud, warped, machinery-like noises.
Currently, this is mostly gone (thanks to sleeping pills), but I still occasionally feel this when I try to take a nap and sleep on my own. It has become less severe though and now I just feel random, caving-in-like pressures on my chest and arms. Needless to say, stuck on a bad drug trip that never ended? Yes. I dreaded the night for a long time. Welcome to my private hell.
On that same note, waking up… let’s talk about waking up. If I woke up too fast or something/someone startled me or made a noise that suddenly woke me, I would be catapulted into intense internal shaking throughout my entire body, though I appeared still. My vision would shake and it felt as if every cell was vibrating like a giant gong. After 5-10 minutes this would subside.
Disturbing dreams. Kay, everyone gets these. Disturbing dreams on Lyme though? Dreams from an underworld where my brain is simply a cacophony of everything weird, terrifying, or bizarre it had filed complete with utter helplessness as you are trapped within for the duration. Dreams where I am simply screaming.
Dreams where I am in terrifying landscapes paralyzed and dumb… dreams where I am aware I am dreaming but can not wake up to escape them… dreams where sleep and wakefulness merge and you don’t know which one you are in. And of course, no terrifying sleep disorder would be compete without sleep paralysis.
Don’t ask me about laying awake alone in a room and not being able to move as the evil little girl giggles and bounces around the edges of my bed before popping up over my face with black holes for eyes. Don’t ask me how I struggled and struggled to utter a single desperate sound to my dog for help in what surely was reality to me at the time. Don’t ask me, I don’t want to talk about it.
Time skips. No I don’t mean like I lost a sense of the time. I mean like I would feel for a second or two that I was blacking out, blink, and would be a couple seconds forward in the future. I guess that’s a fancy way of saying I would experience 2-3 second blackouts. Stop trying to impress, Tara. This was not heart-related, but like static flickering of the brain.
Orangutan arms. My arms would suddenly feel super heavy and large. So I call it orangutan arms.
Mouse cell text messages. Say what? Ok this is just what I’m thinking as it’s happening… but I get tiny little 2-3 second buzzes in my fingers and feet. It feels like a little mouse phone in my foot receiving a text. This is not medicall verbiage I hope you didn’t come for medical verbiage.
Waterbed head. Another cute name I made up to describe the moving pressure sensations in my head that would slosh around, often against my sinuses behind my face. Straight up guys, I felt like there was something living and moving around in my brain.
Brain surges. It feels like someone is waving a light saber around in my head. Hopefully that helps.
Hallucinations and visual disturbances. At any given time there is usually something in my vision field that frankly, doesn’t belong there. Color blobs, fireflies, black dots, ghost images, outlines of images I previously looked at, movement in my peripheral, and even once or twice, a person.
Once I woke up in the middle of the night and only saw colors for about 10 minutes.
Let’s talk about feeling phantom creepy crawlies, including but not limited to: Bugs on my skin? Check. Worms in my head? Check. Bees stinging my face and lips? Check. Gurgling, bubbling sensations in my chest? (not really a creepy crawlie thing but I don’t where else to put this because how do you categorize weird) CHECK.
Hi, my name is Tara, nice to meet you. Oh, I look distracted? Sorry, I’m a little under the weather. =/
Lightening bolts of pain. For me, these began in my spinal chord and would flash straight down for a second or two and then be gone. These would also flash across my face in a branch like manner.
Painful patches on my skin. Just a patch of normal-looking skin, but touch it, I kill you. And the pain? Not normal pain, it was like the inbred love-child of burning pain and poison ivy itch? But not. I don’t know. Stop looking at me I DON’T KNOW.
Feeling my blood course through my veins. Whether I was actually feeling it or my nerves were just creating a sensation that seemed I was feeling it, I don’t know (and really, does it matter?), but it was slightly unnerving. Little rapids sloshing through my veins. Up my neck and down my arms weeeee.
The sensation of a large, uncomfortable rod that went from the base of my skull, slightly off-center from my cervical spine, behind the back of my throat, and ending around my upper chest beneath my heart but in front of my spine. Got it? No? Me either. Neither did my doctor. We laughed about it. Shrugged our shoulders, even. Then I went home still as uncomfortable as ever. Thankfully, this one is gone now.
Burning palms. Like, you just dragged me on my palms behind a car on the asphalt kind of burning. What is this madness. Why does this happen. Enough, LYME, you’ve made your point.
Basically all pain, even new pain. My nervous system likes to get creative. Hot water running down my back? Cold water running down my face? Burning, stinging, biting, freezing, aching, stabbing, mixtures of all, whenever, wherever, however it wanted to. My friend Sonya stated we are the voodoo doll and Lyme has the power. She makes a good analogy, that Sonya.
Being unable to talk. This usually preceded a seizure of some sort or sometimes just popped in and out like a strong summer storm. The words are there in my head, but I can’t make them come out of my mouth. Instead I sit there looking terrified, mouth open.
Feeling outside of my body.
Feeling trapped a mile underwater with all of its tons of pressure force against my body.
Feeling I am existing in a parallel dimension.
Feeling that the real isn’t really real. The stapler I’m looking at right now? Not real. A weird, uncomfortable disconnection with life. You’re over there, in your dimension, doing your dimension’s normal things, and I’m on the other side. Nothing is in my dimension. But I’m stuck in it and allowed to watch you in your’s. It’s an unpleasant and nagging sensation.
Ok I’m done. I’ve made my point. Besides, I can’t really remember more. Ah, memory… that is also for another post, another time. I just wanted to highlight the weird. The out there. The things I find hard to explain but live with on some level every day.
And I wanted to give you, potential Neuro-Lyme sufferer, a chance to know you aren’t alone in your weirdness. It has gotten a lot better for me. A LOT better. Treatment works. Supportive medications work. I don’t think you have to really fear a lot of these symptoms, I mean, I’m still alive.
I don’t know if that is sound medical advice, you probably shouldn’t listen to me. My brain is totally whack. But I think you should at least laugh at a few of them, otherwise you are going to go even more crazy. And I don’t know if you can come back from that kind of crazy. You know?
And also, my intention is not to make light of any of the drug campaign posters I’ve tweaked. Drugs are just as serious an issue. One not to laugh at. But I made them for Lyme, so it’s ok. Again… sound logic? Who knows. My brain is on Lyme.