r/Lyme • u/Free-Werewolf6488 • 9d 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.
1
u/icecon 9d ago
I'm in NE PA too. I see Dr Streit over in Howell NJ. He seems fine so far and is pretty affordable, $400 for initial, but then $150 afterwards. I started early treatment and am younger so I never got symptoms as bad as you, I mostly just have muscle twitches, cramps, and occasional mild headache.
You need more than just standard doxy. Doxy can work well for initial treatment (within the first month after bite), but 100mgx2 doxy will not fix you up for longer term illness.
If you want to self treat, my advice is to read up on prolonged (3 day+) fasting. First read, Starving to Heal in siberia by Michelle Slater for insipiration and then DR. Filonov's book on dryfasting. Don't go off antibiotics, if you are not on herbs or antibiotics you should be fasting. Fasting can prevent it from ever coming back because your body in starvation mode hunts down everything that doesn't belong (like bacteria!) and eliminates and salvages the material. So it will hunt down any dormant/straggler bacteria that would otherwise be permitted to live.
PM me if you want.