It was a warm, fall evening in Santa Cruz as Mr. Wild Dingo and I walked the dogs along the beach. The usual sunset over the sea's horizon was gone and instead a dense wall of fog rolled in. Though it was windy, it just sat there, motionless, blocking the sun set from above. I just started to hit a new downturn in my health, so the weather brought a kind of comfort. It was as if Mother Nature could truly empathize in a way nobody else could as she eased the burden of the bright light on my sensitive eyes.
Sometimes when people ask me about Lyme, they immediately jump to the most commonly associated symptom of the disease: joint pain. I suppose because it’s the easiest symptom to see in a person. I’m glad it eventually ended up in my joints because I’m not sure I’d have a diagnosis if it didn't.
But of all the symptoms Lyme disease is capable of, the neurological symptoms are the most frightening. Maybe because it’s harder to see from the outside. Or because the symptoms feel so utterly uncontrollable and cruelly invasive. They certainly can be the hardest to stop. The bacteria stealthy burrows deep into brain tissue to avoid being killed by medications that can’t cross the blood brain barrier.
It's so hard to explain to a healthy person, what's really happening to you neurologically without sounding like you've lost your mind. At its worst, neurological Lyme disease can cause paralysis, seizures or schizophrenia. With lesser symptoms, the victim is plagued with insomnia, nightmares, brain fog, word or song iteration, word loss (tip of the tongue), and hypersensitivity to sound, motion, or bright lights.
Those lesser symptoms sound fairly benign, but piled up and never-ending, can make daily living grueling. Often, explaining neurological Lyme disease to someone can feel like hitting my head against a fog wall.
“Oh I get ear worms too,” someone may claim. “I’m always forgetting words and people’s names too,” says another as they try to identify. No, no, no.
Neurological Lyme symptoms are nothing like the typical forgetfulness or song ear worms (repeating song in your head). It’s the ear worm so extreme, so radically incessant, it leads to a vicious cycle of panic and insomnia, especially if you don’t know what caused it. When it first happened to me, it was the unending techno music (that I once listened to while on the stationary trainer) playing in my head 24/7 that snowballed into weeks of insomnia, incessant agitation and eventually neurological system shutdown. Today, even on my best days when I can listen to music, techno is no longer on my playlist.
Tip-of-the-tongue symptoms in Lyme are also much more than occasionally forgetting a rarely used word. Instead, its a daily struggle, with common words. I once literally forgot the word “Alzheimers” (you have to laugh at the irony) and substituted "preying" when I couldn't remember the word “hunting.” (Remember this this gem?) Those are only two out of the hundreds of instances over the last eight years. At the time, I chalked it up to being daft, not knowing it was the beginning of long journey leading toward more frequent occurrences.
Neurological Lyme can also make it difficult to comprehend written or spoken words. When I recently opened up the user manual for a new camera, I could read the words, I could understand the words individually, but I couldn’t understand the sentences. This is the kind of thing that could really rattle a person especially if the underlying cause is not known. It's as if you're learning a brand new language. Your neurological system has gone haywire. Nothing makes sense, no matter how hard you try. Thankfully, by then, I knew what was going on and just put the manual down for another day.
"Pop, do you think Mom will forget what 'Arrgggghh Arrgghhh Arrgggghh' means?"
Beyond song iteration, there’s also a hypersensitivity to sound or motion. It’s hard to explain to Mr. Wild Dingo, who recently installed wireless amps and speakers in every room in the house and even the outdoor garden areas, why music sometimes feels like an assault on my brain. Music has always been a big part of my own and our lives, so why could it suddenly make me agitated, unhappy and downright crazy? For some Lyme patients, loud sounds, music, bright lights or fast motion can trigger seizures. For me, music, or action and war movies, can trigger uncontrollable muscle tremors, brain fog/confusion, insomnia, extreme agitation, "brain freeze" pain and even anger --not to mention the ear worm from hell. When I’m in a downturn of Lyme, nothing makes me more furious than a cheerful French song, the twang of a country melody or the pitch of Pop music. Mr. Wild Dingo gets it as best as he can, but since I’m not having a seizure, it’s hard for him, or anyone, to really understand.
But there’s a bright light in all this dense fog! Recently I discovered no matter how bad I feel, I can tolerate Soft Rock. I have no idea why, but so far, even when I'm feeling really bad, it hasn't triggered any symptoms. So on my darkest days, if Mr. Wild Dingo wants music, he is forced to endure REO Speedwagon, Foreigner, Journey, Phil Collins and Brian Adams on Pandora’s soft rock station.
Why beat my head against a wall of fog explaining why he can’t listen to music when soft rock is enough to send the message that I’m feeling extra Lymie that day?
As for everyone else, it’s easier to roll with, “Yah, it’s that joint pain disease.”
It's Like Beating My Head Against a Fog Wall
I had no idea how many ways Lyme Disease can wreck havoc with someone's health. These symptoms sound horrific. I'm really glad you're educating some of us--and that you're able at times to put together such beautiful photos and language.
I'm sending healing thoughts.
Oh Julie, this just sucks. Though your photos are beautiful. Otto sends little healing rottie kisses.
Lyme sounds really nasty. You're right, I don't really 'get' how it's really affecting someone with it but the way you describe it, it seems something you wouldn't even wish on your worst enemy. Sorry you have got it and I hope you get more better days. Thank you for sharing your experience and for the beautiful photos. You take beautiful pictures.
Ah, the most horrific symptom of them all - liking soft rock. Shudder.
Seriously, I don't understand - couldn't - but really appreciate the time and effort you are taking to educate us on Lyme.
Soft rock?!? OMG, that's even worse than I could imagine. 😉 Totally kidding (but you knew that). Bitchin' pictures - what camera did you get? I keep toying with the idea of getting a new camera (when I win the lottery, that is), and I'm asking every one.
-Dr. Liz, who certainly doesn't understand what you're going through, but hopes she bring a smile to your face on occasion.
Interesting set of symptoms. My friend who had/has Lyme also gets brain-fog. So when it happens, just wrap yourself in that soft-rock fog & carry on. Just sayin'....
It looks like you figured out the camera!!! I have to go along with the others about soft rock. Mr. Wild Dingo must adore you to be willing to listen to soft rock 🙂
More seriously, I wish something could make this all go away for you. I know that none of us can really understand but we can try. And we can hope with all our hearts that you start to feel better.
I know the isolation of a chronic condition. I look fine to many people yet the pain renders me "unable to think" by the afternoon of most days. When I say that "I can't think right now", people look at me as if I'm insane. Only the Runner has some idea what I'm talking about because he's attempted to have serious conversations with me in the evenings. Forget it - I can barely follow his reasoning, much less put together a cogent response.
So, I do understand the isolation of having something that most people can't understand. I'm glad that you have your two wonderful doggies and Mr. Wild Dingo. They are the greatest gift in the world.
I'm so sorry to hear what you have to go through. I find your posts on the disease very educating and humbling. Thank you for helping us have a slight inkling of understanding on what it feels like.
I"ve been like this for a very long time. Now I can barely stand simple conversation at times. It is painful to see other people enjoy these 'normal' things in life and I'm simply tortured by them.
The best thing I can say is "I feel your pain"
Those here making fun of such torture, and torture it is, should be ashamed.
My son, Paul, 19, has just been diagnosed with Lymes and Bartonella. We thought he had a mental illness.. he just started the antibiotic treatment on wed and we are already seeing the Jarisch-Hexheimer Reaction... get worse before getting better. I am so thankful that we know what he has... we were at a loss before.. I kept saying to myself, I want to find out what is the under lying thing with him... his meds (anti psychotics..) were not working. I am a Christian and I believe God has helped us find out the diagnosis.. his regular doc didn't find it.. I took a chance with a lymes specialist doc, did blood work and here it is. He has the rash from Bartonella and sadly we thought they were stretch marks.. I don't know how long he has had this disease. You are a brave woman, sounds like you have a great husband. Did you ever think you had a mental illness like schizophrenia?This poor kid has been through so much. Glad to see there is light at the end of the tunnel.
thanks Dawn NJ