Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

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 unexplainable Twilight Zone of Neurological Lyme.

nightmare

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.

Nervous system

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. Neuro Lyme

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?!?

truth

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!dreams
  • 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.

drug2

  • 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.

drugs4

  • 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.

bugs

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.

voodoo

  • 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.

drug1

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.

drugs5

I hope you don’t have questions. ‘Cause I can’t explain any of this stuff. It’s Twilightzonelymiosis.

Advertisements

67 comments on “Lyme be Weird – The Twilight Zone of Neurological Lyme

  1. jessthelymie
    July 23, 2017

    Woah. This resonates with me so well. So many of my symptoms.. bam! They’re right there. They are the hardest ones to explain to family and friends. Which is why I’m taking hecka screen shots and sending to them. I always say I’m dizzy… but what I really mean is “I feel like I’m tripping on bad acid, not recognizing people or things around me (literally), as my head had been lost in a huge pit of fog, all the while stumbling and knocking everything over. Oh and there is constant visual snow… a million little wormy things in my vision; all the while feeling a constant unsteady buzzing in your head, with lots of pressure/inflammation. But hey, that’s just the constant stuff” 😜 But seriously, this is some heavy duty, life or death illness.

    Liked by 1 person

    • tarathackeray
      July 23, 2017

      I feel you!!! It does get better!

      Like

      • emcnulty20
        August 16, 2017

        It does how freaking long? Going on 3 years. Tara, I thought i was the only person on this planet that feels this way.. I’d love to compare notes.

        Liked by 1 person

      • tarathackeray
        August 16, 2017

        Message me through contact me tab and we can compare ☺️

        Like

  2. Brennetta
    June 3, 2017

    Also I’d like to add a name for a wacky feeling I call it “cell’s eye view”. It felt like I was really tiny and observing from deep inside my body. Or like I was an fly stuck in my body. Doesn’t make sense, but that’s Lyme for ya.

    Liked by 1 person

  3. Brennetta
    June 3, 2017

    Thank you so much for posting this! I experienced all of this and something that was like a rapidly progressing dementia. Those symptoms played out exactly like my brain was shriveling. But I’m pretty young so that left people confused. I’d been er hopping all over the states, while not functional a lot of the time. So there was a lot of me waking up (as myself, in the realish world) in some ER because I’d get a dose IV antibiotics for meningitis. I’d return to a better mental state for a little and that was the cycle until I descended into hell and didn’t come back until they found it. After 1 month course of antibiotics by mouth and half a year later a lot of my symptoms are resolved! Also something that’s really funny, at some point I was speaking only in a “chicagoan?” accent lol. I’m not from there and haven’t really heard it often. So that’s my story. Hopefully someone reads my comment and can relate to it even just a little.

    Liked by 1 person

    • tarathackeray
      June 3, 2017

      So glad you are doing better! I’ve heard of the accent thing happening to others with brain injuries, so doesn’t surprise me as Lyme does injure the brain! At least you have a crazy story to tell 😮!

      Like

  4. Lynn
    May 14, 2017

    I never thought id find anyone who’s had the same symptoms as be! “Weird” indeed! I’m into my 2 week of a two month stint with IV antibiotics and I’m feeling better each day.

    Liked by 1 person

  5. Anonymous
    April 20, 2017

    Thank you so much for your story.. I feel so much better now.. I thought I was the only one feeling this way.. wow thanks..

    Liked by 1 person

  6. sarah
    March 31, 2017

    i understand every word , im on lyme, my only fear now that its been so long isnt wether ill ever get better i mean really properly better….its that i dont know how to be a normal healthy every day person or wether this reality i live day to day and accustomed to all the wierd is my new normal and i wont know how to live every day in any other reality … its the most exciting thought…to be healthy to be the me i was before this ..but i dont see that person in the mirror ( when i can even see my entire face in the mirror without having to turn to see the other half :s ) so how will i know how to be … i think maybe that me is gone for good now ive been through so much change in my mind body and spirit … i guess ill wing it but i do miss myself ..i vaguely remember how it felt to be me. unexplainable but thankyou for being a strangers voice that made me feel so much less alone than i have . also sorry i make no sense but you know 🙂 thankyou

    Like

    • tarathackeray
      March 31, 2017

      I understand you because I felt the same things. Of course we will never be the same, simply because we aren’t ignorant of deep, imprisoning illness anymore, but we can live an every day “normal life”. I promise you that as you recover, you figure it out. As symptoms slowly begin to disappear, and you slowly begin to naturally do more, you’ll realize one day that you are living again. It really is like riding a bike 😉

      Like

  7. Jessica
    March 1, 2017

    I know this is an old article but I just wanted to thank you SO much and tell you that I understand and I am so sorry that you suffer with this as well. I have read a ton of articles trying to find the right one to explain some of my symptoms to my loved ones. This is SPOT ON. You also made me laugh about it, and I needed that. Thank you so much. Sending love and healing vibes to you 💚

    Like

  8. Michael
    February 25, 2017

    My life went to crap after a tick bite that produced a nasty ring rash. Heart issues, pain in my elbows and I began sleeping inordinate amounts of the time. Often I would have little choice in the matter as the sleep urge felt my head was full of some viscous liquid that was knocking me unconscious rather than just falling asleep. Dr’s have been the opposite of helpful. I found your story helpful because you actually managed to describe a lot of what I have experienced that lies in the wtf realm. Thanks for sharing!

    Liked by 1 person

    • tarathackeray
      February 25, 2017

      I know that falling asleep feeling! No fun. Hope you get better soon.

      Like

  9. Rob
    January 30, 2017

    What antibiotics or protocols were you taking

    Like

    • tarathackeray
      January 30, 2017

      Rob message me through contact me tab and I can be more detailed

      Like

  10. Anonymous
    September 3, 2016

    sent this to my family to help them understand. Add in sound sensitivity for me as the cherry on top of this shit sundae.

    Like

  11. Lindsey
    August 23, 2016

    I literally just laughed so hard I cried. No. Like, really cried. This was the most spot-on, accurate and relatable post I’ve read about Lyme, ever. And I must’ve really needed to feel less alone in this current twilight zone, because the laughter opened the flood gates. Yeah, most of us Lymies experience the typical symptoms, but I’ve never heard anyone describe the “weird” stuff as well as you – I’ve experienced so so much of the same things you have. And quite frankly, don’t talk about it with anyone…b/c no one would understand and most would think the bacteria has in fact made me insane in the membrane. Well, it prob has, but whatever. 😉 Thank you for the laugh and for sharing some of your experiences.

    Like

  12. Barbie
    August 22, 2016

    I like orangutan arms. And I like that you also have made up names for the weird things that happen.

    I have what I call “brick days” when my body feels like it’s made of bricks but my brain is awake. Everyone knows about my brick days now and they can be prepared to see a much more sluggish me that day.

    This is a great article. I’ll save it to show people next time I need to try to explain Lyme. 🙂

    Liked by 1 person

  13. Jennifer Doyle
    August 22, 2016

    That was awesome! Thanks for the needed laugh 🙂

    Liked by 1 person

  14. Kylie
    August 22, 2016

    Thank you, Tara. Thank you for everything my brain cant express right now. I relate on every level and all I can think about is that some lymie couch time with you would be pretty damn funny.

    This neuro game is cray.

    Liked by 1 person

    • tarathackeray
      August 22, 2016

      Haha thanks, and it definitely is. Hang in there it gets better!

      Like

  15. e
    August 21, 2016

    Great article, thank u. Btw, the correct spelling is “thesaurus”

    Like

  16. Allegra Knight
    August 21, 2016

    Reblogged this on Liberation through Lyme.

    Like

  17. Teri Adams
    July 3, 2016

    The way you explained the WEIRDNESS of Lyme perfect! Bravo!!

    One of the scariest things about Lyme (for me) was one night of sleep paralysis that terrified the shit out of me. I woke up thinking someone yelled in my ear and I woke up from a deep sleep quickly. , but I was all alone in the house. I tried to move and couldn’t. I felt that someone was in the room with me but I couldn’t turn my head to look. I was paralyzed. I had no control over my body Then I felt someone sit beside me on the bed. The bed felt like it sank with the weight of a body. At that moment I was certain I was going to die. It wasn’t just a feeling, it was a certainty.Then a hand touched my forehead and slowly stroked me me and the “person” said, “It’s okay. Everything is going to be okay”. I thought :”There is nothing I can do. I am totally helpless so I might as well go back to sleep”. And I did. I have never felt a sense of doom and terror as I did that night. I hope to never experience that again.

    I have tremors that ripple through my abdomen and a feeling of disconnect with reality. Time is stretchy for me ( I sometimes can’t tell if 15 minutes or two hours have passed). My tongue burns. I have silent reflux that makes it difficult for me to eat, And on and on WEIRD symptoms.

    When I first got sick fifteen years ago it took me almost a year for a doctor to diagnose me with psoriatic arthritis (based on the palmoplanter psoriasis on the palms of my hands. and my feet) and the extreme pain in my ribs and sternum and hips. I was placed on enbrel and heavy doses of methrotrexate and then later 200 mg of doxy a day for my cystic acne that suddenly popped (excuse the word play) up on my chin. The pain in my sternum and ribs never did go away, and often it was difficult to sleep in a bed (I grew to love the recliner) and the pain in my ribs and sternum made breathing a bitch at times. Somedays I almost felt like ME and the pain was tolerable nut a lot of days were so excruciating and I would have to call in sick to work (I WAS a high school teacher). I could handle pain. It’s wonder that for fourteen years I was even able to teach full time and raise three kids on my own.. I have no idea how I did it.

    In summer 2013 I was rebitten by several ticks on a trip to Arkansas (I now think the initial sickness was Lyme and I just never saw the tick) and within four weeks of the Arkansas bites on my torso ,my hands became tingly, my right hip started spasming again (it hadn’t in years) my right foot got numb, I became very emotional (not a good thing when one is teaching teenagers), couldn’t remember tasks my principal told me to do, my motor skills got so bad that my typing is (even now) became a fucking mess. Thank the goddess for spell check. It’s frustrating because once upon a time I actually wrote some pretty damn good essays, poems, and stories.

    Took me until March 2014 to even have a doctor test me for lyme, and even then he didn’t tell me what he was testing me for. I popped on four bands, one of which was band 23. To make a long story short (yeah, right!) that doctor tried one thing after another and when I didn’t get better after six months, in fact I got worse, he kind of threw up his hands and gave up on me. I went to an ID doctor and she said I definitely had Lyme, but then my insurance refused to pay for treatment, and even if it had paid the ID doc thought that six weeks of I.V rocephin would CURE me, AND she didn’t believe in co-infections. But she did tell me that Lyme tests were only reliable about 40%- to 60% of the time and that they were “shit”.

    So, I am still out of work, pulling money from an IRA to pay a doctor two hours away to treat me with oral antibiotics and supplements. I am better but I am not well. My memory is still crap (I have actually forgotten huge chunks of my life) my sense of disconnect and time is pretty bad, and I don’t like to be around people anymore. I, who used to be so social and friendly and peole loving, can’t tolerate crowds or groups of people in a social setting. . Teaching in a class room full of students would be hell for me right now. .My heart pounds so hard sometimes it feels like it will explode. I get short of breathe and dizzy. Three months ago I had an ECHO of my heart and the doctor told me that I have a problem with “relaxation” in my heart. Hell, it probably only needs a trip to the beach and a few margaritas,, right?..The bitch is that I know I can’t stay on antibiotics the rest of my life. But every time I take a few weeks break from the antibiotics my symptoms get worse.

    Right now I pretty much hate the CDC and the medical community in general. They poisoned me for years with steroids, biologics and toxic chemo and tried to make me feel like the pain and other symptoms were all in my head. Well, the symptoms are NOW all in my head that the Lyme has gotten into my brain. Did i mention that I hate the CDC and the medical community??

    Like

    • tarathackeray
      July 10, 2016

      I’m so sorry to hear all you’ve been through.

      Like

    • GMD
      July 10, 2016

      Boy Terri, do you ever echo how I feel about the US healtH department, IDSA, CDC, FDA, NIH, Mayo, NIH (England), governments of Australia, New Zeland, drug companies, insurance companies, and many others. We get told we are not to complain or condemn. We. … … … COMPLAIN … … … COMPLAIN … … … COMPLAIN … … … ad infinitum!!!!! It is like yelling help … … … help … … … ad infinitum!!!!!! into a hole though. Nobody hears.

      When will we be able to have a class suit????? The horrendous suffering never ends. But it could. Treatment works!!!! Early treatment is superior!!!

      I hear your pain, I feel your pain. I will pray for you. Keep screaming the best way you can, maybe, just maybe someday, somebody will hear us. Long-term ABX (antibiotics) does work. It may not cure, but it does work. Like diabetics need insulin all their lives, if ABX IV works, we should have access all our lives. One note. I think ABX like Tara takes them is a newer treatment path. The ABX IV pulsed probably helps bring the bugs out of hiding so we could have a better chance at a cure or even a long remission.

      If it helps any, I really hear you, and am so extremely sorry you have to go through this. Establishment medicine is so cruel!!!

      Like

  18. Lori
    April 25, 2016

    This is really interesting to me, I’ve never been tested for Lyme however my mother and I have both had many of your symptoms. I was diagnosed with anxiety disorder in 2012 and put on Lexapro which seemed to really quell my more-disturbing issues. My mother is on antidepressants as well. I was in two car accidents in 2002 and was treated for whiplash. Since then I’ve had a host of pain/sensation issues similar to some of the ones you described. I often wonder if I have something neurological going on-a mixture of long-term results from my accident and anxiety disorder mixed. I’ve had some of the symptoms my whole life. Thank you for posting!

    Like

    • tarathackeray
      April 25, 2016

      You’re so welcome. These symptoms definitely indicate neurological damage or disorder… And an accident could certainly trigger it. Hopefully you can find relief though. It’s no fun!

      Like

    • Jordan
      May 28, 2016

      Lori have you had an mri?

      Like

  19. Jordan
    December 19, 2015

    I have all these symptoms with no diagnosis.. Did you ever have pressure in ears / head and ringing ears ? I have 2 kids and i got sick 7 months ago and dropped out of nursing school and basically dropped out of life i need help!!! There are no lyme doctors around and all my doctors say everything is normal 😦

    Like

    • Anonymous
      August 23, 2016

      Ringing in ears happens. Where about do you live? maybe someone lives near, or even in the same state. I live in Pa. contact me if you think I can help.

      Like

  20. Mike Adams
    November 17, 2015

    Hey, your description of waterbed head really resonated me. Do you still have that that particular symptom and if you do has it reduced frequency? Did you find if any treatment was effective for it? Thanks so much.

    Like

    • tarathackeray
      November 17, 2015

      Mike, it still comes and goes. It’s hard to say what exactly is making things better since I take such a variety of antibiotics… Perhaps the biggest thing is just time plus antibiotics. I’m 18 months in and it’s a slow process. Best of luck, waterbed head is horrible!

      Like

    • Jordan
      June 20, 2016

      Health Ranger, I have this as well. I think diflucan has helped with this for me.

      Like

  21. GMD
    September 12, 2015

    I do not like phobias. When I was young and fell two stories trying to get in my home when I was locked out (stacked up boxes actually made a relatively safe fall), I developed a height phobia. However, when I had my own house which needed painting, I forced myself to get over that phobia. But, … now … I have a phobia of animals, bugs, woody places. It is always on my mind. Don’t know if I can ever get over that phobia because of Lyme. Just a Lymie rambling.

    Like

  22. proudestmommy002
    September 11, 2015

    Awesome descriptions for the crappy sensations. The one that really caught my eye was the “time skips” as I have been getting these recently and couldn’t for the life of me come up with a good name for them let alone describe it. You did a great job though, it feels as if for a millisecond of time you black out and then come to but at the same time you are conscious the whole time. I will get them one after another for sometimes an hour and it will throw me into a full blown panic attack most times. This is one of my worst symptoms besides my evil head rushes, but it is so scary to deal with 😕

    Liked by 1 person

    • tarathackeray
      September 11, 2015

      I’m still alive, so they probably aren’t anything to worry too much about… Just annoying and unnerving! Hang in there 😊

      Like

      • GMD
        September 12, 2015

        I appreciate your sentiment saying they probably are not anything to worry to much about. However, we mostly hear from Lyme patients who either have had or are getting treatment. I, we, really don’t hear about or from Lyme patients who do not make it, as in they die. This makes me wonder how deadly these symptoms are. I cannot get treatment any longer, but I did have treatment 4-5 years, mainly IV ABX. I have been relapsing since 2009, and I am very sick, but I know I do not have all the symptoms that I had when I first learned I had Lyme (2002). Would I still even be alive if I had not had the treatment I did? I keep getting worse, but I got rid of a significant number of symptoms permanently. They are making a lot making fun of Yolanda Foster now, even saying she never had Lyme. Yolanda has had so much Lyme treatment. Would Yolanda be recovering, even having removed her silicone implants and the silicone leaks if she had not had all the Lyme treatment she received? I personally do not think she would be recovering as well if she had not had her Lyme treatment. She did test positive for Lyme. It is a question to consider. We can watch Yolanda to see if she still will need Lyme treatment. She has done and is still doing a great job of bringing awareness of Lyme disease. Support Yolanda any way you can, blogs, video comments. She does not need your money.

        Like

  23. Pingback: Saturday in the Park | Lyme and a Coconut

  24. LymieLovesJesus
    August 7, 2015

    Wow, again, thank you for putting words to things I have just begun to experience, think WEIRD, actually…think “oh my gosh I must be the only one” — and now I know I’m not! Thank you so much, Tara. Your humor is the best part as I am in a deeply morose and serious emotional place. You make me laugh and precious little makes me laugh these days. Can’t wait to read more of your blog. I do hope that the WEIRD has lessened for you and normalcy has invaded your days like a most welcome visitor.

    Liked by 1 person

    • tarathackeray
      August 8, 2015

      Aw thanks. I hope WEIRD doesn’t last tooling for you! And yes, “normal” has started putting WEIRD in its place little by little. Hang in there! It’s as tough as battle emotionally as it is physically.

      Liked by 1 person

      • LymieLovesJesus
        August 8, 2015

        I’m going to show the list of neuro stuff to my husband. You explain so many things that I haven’t been able to find words for. Thank you!! It’s always such a struggle to have loved ones understand. Your blog engages them with realness and humor. Thank you!!

        Liked by 1 person

  25. Thoughts between pages
    August 4, 2015

    This is so spot-on. The insomnia I’ve experienced in the past was indescribable. My doctors, therapist, ex-fiancé, and family chalked it up to anxiety. NOPE. Think of all the people who have mental/neurological issues that aren’t psychological… They’re completely caused by outside sources affecting the body. Modern medicine suddenly doesn’t seem so modern.

    Liked by 1 person

    • tarathackeray
      August 4, 2015

      Love the last sentence. Thanks for the comment. I hope you are doing much better!

      Like

  26. Anonymous
    July 26, 2015

    This is a brilliant post and has provided me with some info that has made a few things make sense, i was only diagnosed in Nov 2014 but feel I’ve had it for many years…. Seeing my specialist in Aug to get results from Aust Biologics and Germany and hopefully can plan a treatment plan.

    Liked by 1 person

    • tarathackeray
      July 26, 2015

      Thank you and I wish you the best… Keep fighting!

      Like

  27. Jackie
    May 19, 2015

    Great post!

    Like

  28. compostingwords
    April 12, 2015

    Oh man, you sure did get to experience an overwhelming sea of weird. And you are so right – how the hell do you talk about the weird stuff with regular MDs? Probably best not to!!! So glad to hear that the worst is behind you and wishing you a complete recovery.

    Liked by 1 person

    • tarathackeray
      April 12, 2015

      Thanks so much!

      Like

    • Marianne Rodgers
      April 12, 2015

      :Lyme is like falling, falling, falling, falling, falling, falling, falling, falling, falling, falling, falling, falling, … … … … no bottom.

      Liked by 1 person

      • tarathackeray
        April 12, 2015

        It sure felt that way for a long time….

        Like

      • compostingwords
        April 13, 2015

        It can be. I was blessed to have not fallen so far and to slowly climb back out. I wish for others to climb back out as well. 🙂

        Liked by 1 person

  29. bloggerlenny
    April 12, 2015

    Reblogged this on The Lyme Bean Chronicles and commented:
    this. i get every word.

    Like

  30. Marianne Rodgers
    April 7, 2015

    Tara, you are so very creative on Lyme. Like Lyme is a drug. Thing is you really can stop taking a drug, but you can’t stop taking Lyme. I can’t help but wonder how creative you were before Lyme. You are doing a fantastic job of describing weird. As a Lymie, I understand all too well. I am intimately acquainted with weird. Lately, my favorite word has been torture, but torture is only a variation of weird really. I can’t help but wonder if non-Lymies understand your writings like Lymies do. I no longer can relate to being a non-Lymie. Weird is my normal.

    Liked by 1 person

    • tarathackeray
      April 8, 2015

      Marianne, torture is also a word I have used often during my treatment! Wanting to escape my body, no longer comfortable in my skin, wanting to die but can’t…. Yes I think we have all uttered these things at one point or another. I have lost touch with “normal” too, although thankfully, my treatment is slowly bringing closer and closer in view. Some days I think I can see it just off in the horizon. I take it one day at a time. For now, here’s to us fellow “weirdos”. Thanks so much for your comment 🙂

      Like

  31. eenymeenylymiemoe
    April 6, 2015

    I can tell you are a lot better because all of these symptoms you were experiencing around October of 2014, and now few months later many of them have reduced or are gone so, woot woot ❤

    Liked by 1 person

    • tarathackeray
      April 6, 2015

      Likewise sista! ❤️

      Like

  32. Shawn Boreta
    April 6, 2015

    Hit that one… I can’t even think of that much. I forget the symptoms as soon as they start. Dreams… oh the dreams. I didn’t remember my dreams for years, and this last start up session, I remember weird, a lot like those pictures you chose. The last one, recurring… a deer (miniature, size of a chipmunk)… wanting to be on my lap, leaping and jumping around in between cat-like affection. (deer tick??? fear, possibly). Thanks again for your ever so clear details.

    Liked by 1 person

    • tarathackeray
      April 6, 2015

      So funny Shawn! I couldn’t even begin to remember all the bizarre dreams I have on treatment weeks!

      Like

  33. Kelly
    April 6, 2015

    Tara – you are such a wonderful voice in this community of survivors…

    Thank you for your great work – I will post to my LinkedIn account so others can learn more about your struggle and your wisdom!

    Good wishes and God Bless,
    Kelly

    Like

    • tarathackeray
      April 6, 2015

      Thank you as always Kelly!

      Like

  34. Anonymous
    April 6, 2015

    Brilliant !

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Information

This entry was posted on April 6, 2015 by in Humor, Lyme Disease, Lyme Education, Neurological Lyme and tagged , , , .
Follow Will There be Cake? on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 240 other followers

Categories

Instagram? Hit. Me. Up.

Stormy seas + Frankfurt MI lighthouse pier = mouthful of Lake Michigan 💦

#lighthouselove #lakemichigan #puremichigan Took the pupperoni paddle boarding today, 100% against his will. 
#thingshumansdo #suttonsbay #puremichigan #missionpoint I'm blue da ba dee da ba daaaaa

#lakegirlbackwithherlakes #mackinacisland #puremichigan Doin things with statues. 
#wedidnotgetconsent #greatposemom #grandtraversebay Things Dustin doesn't do: tell me I have hair in my face when taking a picture 🙄

#notaninstagramhusband #leland #puremichigan #fishtown Happy place. 
#leland #puremichigan #lakemichigansunset Sand... how does that work

#favplaceonearth #sleepingbeardunes #lakemichigan #duneoverlook #puremichigan Countdown to #puremichigan begins! Departure time: 3.5 days 😀 
#snapshotfromlasttime #lakesuperior #greatlakes #homesweethome Just two cool kids at a wedding. Also, MY BROTHER GOT MARRIED WOOOOOO! 🎉

#therewascake

Twitter? Youbetcha.

%d bloggers like this: