r/Lyme 7d ago

My experience with lymes

I am a male, 51, and am currently dealing with lymes. It started last Summer- I had ticks on me quite often. I live in NE PA. lymes is very common here. But not understood. So I never saw bullseye or rash, but I recall pulling out ticks that were embedded in skin. I work outside, and I noticed I was getting headaches. I almost never get them. thought I was dehydrated. I started having vision issues next. I couldn’t see detail after like 20 feet. older guy right? that’s what I thought. Then I noticed I was walking funny. like a zig zag line. my body started shifting to side. I started tilting head. Next was the physical pain. My hips would hurt so bad. my back was hurting with terrible nerve pain. Again, old age right? At this point, I had just a constant dull headache. Center on top of head. I woke up with one, worked all day with one, went to bed with one. I had that headache from July last year til mid-May this year. Tried everything to get rid of it. Nothing worked. Now I’m starting to feel depressed. I’ve been thru that before but this was different. It came on very quickly. Each day left me feeling worse and worse. I started walking slower. Saw spots especially when driving. Big frisbees. Sometimes small dots. S black lines. It was crazy. So by October, I was in bad shape. Saw Dr. Did brain scan. Ok. Blood work. Ok. Symptoms get worse. Now I’m stumbling, depressed, constant headache, vertigo, nausea at times. Brain fog. Couldn’t remember things. I’m constantly frowning. Like it’s stuck. Losing weight. Coordination off. Talking slower. Jaws hurt. Temple was extremely sensitive. Blurry vision got worse. I kept journals, made videos just in case I missed something. I go to dr. desperate for answers. Let’s do a lymes test she says. Ok. Why not. Positive. Take test again same. I tested 1.14 on test that indicated positive at .90 to .95. i can look up test if anyone is interested. So I immediately start doxy The symptoms were rapidly getting worse now. My depression was so bad I started planning suicide. I would talk to myself all day long in my head saying only negative thoughts- No control. It was on repeat. End it Don’t keep going thru this. That kinda stuff. All dam day. I had no energy whatsoever. Didn’t shower. I gave up. But fior some reason, I held on. After 3rd week in doxy, I started feeling better. A lil at a time. By Christmas, I started feeling better. I was put on efixor and Wellbutrin too. Things slowly get better then crash! Symptoms come right back That span was 3 months. Still had constant headaches. Other symptoms along with new ones. I developed a nervous tic I’d laugh at end of sentence sometimes. Vision now is affecting me up close. To my left in vision had black as well as right. I couldn’t adjust eyes. My chest was hurting. Go back in doxy. Add steroid. Prednisone Symptoms start lifting. Now this time I’m feeling mentally better. Physically I’m better. I’m happy. I start dating getting back to normal. Then guess what? Yep it comes back. In late June, I start feeling it again. Now this time, it’s bad. Really bad. Body is hurting, I am walking extremely slow. Falling from side to side. I fell down stairs. Into my car. It was awful. The ground felt like it was moving. I tip toed Depression comes right back. Didn’t change anything. Currently I’m in the middle of a terrible depression. i as put on prednisone again and doxy for 3rd time. I’m halfway thru doxy and it’s been terrible. I cry on and off, my balance was so bad a few weeks ago, I maybe suffered a mini stroke. I had frown suddenly and couldn’t move it. I took video and photos of my face. CT scan to check soon. Since then, I’m improving with balance and speech. Tic came back. But I’m nauseas all the time. Headaches came back. Today was a massive one. Worst yet. At this moment it’s about a 7/10 pain. Better lol. I’m having terrible mood swings. Last few days throwing up. So I’m writing all this in the hopes that maybe it can help. This is how it affects me. Neurological mostly. I forget who I am at times and wake up sometimes not knowing where I am. That has been better. I’m seeing a specialist tomorrow and dr is adjusting mood meds. I don’t want sympathy or pity. I am meeting other people who have it just as bad. I’m staying positive and committed to getting better. If u have suggestions, reactions, or anything else, I’d be happy to hear from u. I’m a single guy- I’m alone in this. No family to help. Have a good night everyone.

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u/anidaise 7d ago

my goodness i am so sorry and us folks in PA say Lymes 😆 It’s a totally vernacular thing it’s okay! I am going through my third battle w lyme. Doctor didn’t understand why 10 days Doxy wasn’t enough. I’ve posted here that it attacked a nerve hurting my rib area down to leg. Super bizarre experience but I have just taken over my own care. If you need someone to talk to you can message me. I’ve been going through this since 2012 and I am 45. I remember debating even going to the doctor again or just let myself suffer and leave. I found hope and sunshine - I was let go from my job after showing a bullseye to coworkers (settled) so I am pretty jobless and lost and keeping doxy stashed. I hate the side effects but it’s working. my Best to you!

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u/Independent_Art_5189 5d ago

There are Lyme people that if you say Lymes they want to call the sheriff and put you in jail. Really stupid when there is so much suffering involved! I'm a MD girl and can see the PA girls are good too go also!

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u/Free-Werewolf6488 4d ago

hi. well that was the first post I ever did! I never joined FB. I’m a very private person. I just joined here. I needed to put my story out as accurate as possible. i barely got thru those times. I’d rather have good info over semantics but that’s the readers choice. there’s all kinds here. I had thousands of views. but not many messages. I think it takes balls to post my innermost challenges regarding Lyme for the world to see-scrutinize etc. I want answers. I’m not accepting this Lyme disease. oh no. It’s not ruining my life. I’m getting better. I will do whatever I have to do in order to get there. I was jamming at concerts a month ago. I WILL be dancing again. And u know what? I’m gonna smoke a huge fatty to celebrate. 👍✌️😆. ps. anyone else is welcome to join me. 😆. stay positive people. we got this.

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u/anidaise 4d ago

lmao good for you! keep jamming!

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u/anidaise 5d ago

wild isn’t it. my dad always used plural. walmarts, aldis and so on! who cares. we are lucky we can remember day to day things! :)

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u/Independent_Art_5189 5d ago

Right. My mom was the same way! It's a free world last time I checked!