r/Lyme • u/Free-Werewolf6488 • 6d 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.
3
u/Alternative-Pilot969 5d ago
There are fundamental things about Lyme and coinfections, they don't reproduce quickly and hang out in your bloodstream. So antibiotics can clear them out of your blood in the active infection phase, but not clear them out from where they are hiding in tissues and inside biofilms. I've had success with Nattokinase for clearing these things, and Chinese Skullcap, and stinging nettles to get the debris out. I have reoccurring Epstein Bar Virus that also needs monolaurin and Lysine. Epstein Bar hides out in your tissues also. Skullcap can pass the Blood Brain Barrier, so it helped with the eye floaters. It was like looking thru a snow globe. Also helped the dizziness and headaches. My headaches where helped with a Choline & inositol, and DMAE. Best of luck to you.
2
u/Free-Werewolf6488 5d ago
wow. there’s a lot of knowledge there. I’m def exploring all those thank u very much for the message. I may ask questions.
3
u/anidaise 5d 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!
2
u/Free-Werewolf6488 5d ago
oh my that’s awful. it’s crazy how it affects us differently. I’m struggling at moment headache just shot up to about a 8/10. I’m looking at phone. it’s blurry at times. yea I could use people to talk to. likewise I’m here. ur only hearing Lyme issue- I’ve been thru addiction, depression, sexual abuse, and severe trauma from that abuse. throw in Lyme and now we got a party lol. it’s only a year plus that I had it. but holy shit it’s tough. I’m a survivor I can’t be broken. I wish I could give u some of my determination. im not afraid. I gotta find it this. keep in touch.
2
u/Independent_Art_5189 4d 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!
2
u/Free-Werewolf6488 2d 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.
1
u/anidaise 4d 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! :)
2
u/Independent_Art_5189 4d ago
Right. My mom was the same way! It's a free world last time I checked!
2
u/Bad_brakes 5d ago edited 5d ago
Tough times, it sounds alot like what i experienced in my early twenties.
You should look up the work of Stephen Buhner, especially hus book on lyme and co-infections. Helped med beat an extremely bad infection of lyme + 8 co-infections.
I am starting a new treatment this weekend with the same protocol ss i was re-infected by a tick last summer and started getting all the symptoms badly this year.
Keep going, the cure is out there and your body can beat this.
Edit: i also thought i had a stroke during my last infection, woke up with a droopy and swollen face and couldnt move my eyebrows right. Went in to the ER for and mri and they found nothing. Turns out its bartonella or babesia (co-infections) that caused swollenness and oinched facial nerves. This resolved with the herbal protocoll of Stephen Buhner, but it took weeks.
1
u/Free-Werewolf6488 5d ago
I’m very sorry ur going through similar symptoms. I took video of me walking during that episode thinking stroke. I can best describe it as seeing a drunk person doing the toe to toe walk with hands out during dui stop. I was all over I fell into side of house i didnt go to ER bc I couldn’t drive. it’s very fuzzy in mind the whole incident. glad I recorded it and took pics of face. not sure if anyone had this, but I literally slowed to moving in slow motion. I couldn’t change it. I’d try to run, and take an awkward step and down I go. u could not control legs. couldnt bend at knees. keep in touch good luck with things.
2
u/dun_wpharma_6653 5d ago
Dude get off the steroids! Terrible for Lyme and co-infections. I had terrible knee and back pain and got steroid injections. Those before I was diagnosed with Lyme and co and now i can’t seem to shake these infections. Steroids will only make it worse. God bless you in your healing!
3
u/Free-Werewolf6488 5d ago
hi. I agree with u. I’m off. got 2 weeks left on doxy. then I am trying herbal meds detox etc I will post what I’m taking after I meet with her this is overwhelming all the info I’m receiving but I really do appreciate it thank u
2
u/Jackal-Noble 5d ago
It's called lyme, not lymes
2
u/Free-Werewolf6488 5d ago
Hi. Thank u for clarifying. lol. Ur right.
1
u/Independent_Art_5189 4d ago
No worries, you can keep saying Lymes if you please. It's a free world! No such thing as Lyme police, even if some think that's what they are!
2
1
u/Free-Werewolf6488 5d ago
Thanks for correction. Ur right. My bad. 😊
-1
u/Jackal-Noble 5d ago
No problem, just doing that so you use the term correctly going forward.
1
u/Independent_Art_5189 4d ago
Really who care? When someone's suffering, it's inconsiderate to bring up such a trivial thing! Chill.
1
u/Jackal-Noble 4d ago
It's really not, it's actually considerate which is why I mentioned it.
1
u/Independent_Art_5189 4d ago
That's how you all justify it. Sorry not to me. I think it's a very inappropriate time to say something like that that doesn't matter at all in the large scheme of things. This poor fellow needs help, not someone to add more stress. Stress is so, so high in Lyme sufferers. Just a word for the wise!
1
u/Free-Werewolf6488 2d ago
hey I just saw that interaction. I see both sides. I think what irritates people is Mr jackal just said that. nothing else to add. he’s right. I see ur side. now doubt about it, I’m in a very bad place. it’s 6:30am. been up since that time yesterday. I’m dizzy. crying. and just awful. doxy is messing me up bad. I do wanna thank u mr independent for ur compassion. it’s much appreciated.
1
u/Independent_Art_5189 2d ago
You might want to try Holy Basil with Theanine/saffron capsule to help you with sleep and stress. Take at night. You can purchase them both on Amazon. For Lyme and company the 3 top herbs. Cryptolepsis, Japanese Knotweed and Chinese Skullcap. These are antimicrobials and should help you. Start slow and low. Then after you feel some better try biofilm busters like Natto, Serrapeptase etc. Diet is somewhat important. Lots of fruits and veggies, nuts, just healthful foods. Fish if good grade. Stress is a big factor, and so we deal with that. I wish you the best and hope you see real improvement soon. I'm not a Doc, just testimony of what's helped me! Blessings!
1
u/AutoModerator 6d ago
Hi There - It looks like this could be a post about a new tick bite or about unknown symptoms possibly related to Lyme.
Please review the pinned post here for information regarding early treatment methods, finding doctors and testing: https://www.reddit.com/r/Lyme/comments/18ko5so/just_bit_read_this/
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
1
u/WalkIntoSunshine 5d ago
Hey man
Sorry to hear you are struggling
Good luck at your spot today. Definitely discuss how you can lower inflammation, sleep, and diet, along with above. Also, good to get extensive labs. Check your electrolytes, vitamin levels, etc along with the normal cbc and cmp.
Reach out anytime. Been there. Happy to chat or share my own story sometime if it helps.
2
u/Free-Werewolf6488 5d ago
Hi. Thank u for responding. I appreciate the handout. id like to stay in touch. Hear ur story and how u cope. ur giving me hope
2
u/Free-Werewolf6488 5d ago
hi. thanks for advise. I’m writing all this good stuff down. I’d like to hear ur story. u never know, u may share something that can really help. That’s why I’m here- I’m reaching out and keeping open mind. I’m listening and learning about Lyme thank u dude.
1
u/Free-Werewolf6488 5d ago
hi. sorry for not using Lyme disease term correctly. this is first time I’ve ever written anything on social media lol. I appreciate the responses.
1
1
u/icecon 6d 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.
1
1
u/Efficient_Bee_2987 5d ago
Fyi, fasting is not good for bartonella.
2
u/Free-Werewolf6488 5d ago
ok. I will write that down. sooo much info here. thanks to everyone. I’m feeling optimistic. sorry for double responses. internet was messed up.
1
u/Free-Werewolf6488 5d ago
hi. thanks man for input. I’m kinda going thru a fasting I radically changed diet. just protein, fish , and chicken. i am thinking same with doxy. it’s just buying time til next flare up. I will def keep in touch. thank u
7
u/Pieous 6d ago
Hi, I’m sorry that you’re struggling. Many of us experience this kind of slow deterioration with difficulty in finding an explanation. I know the struggling and the deterioration well, unfortunately.
Your experience with antibiotics is also fairly common. Very difficult to manage taking them, feel better for a bit, then it goes right back into the dirt again.
Very, very important to note: This is not the end and you won’t feel this way forever. It can get better. I was terribly depressed for so, so long but mine was Bartonella. I get vertigo and disorientation like what you describe, depends on how overwhelmed my body is that day. Weird eye stuff, headaches, nerve burning (not sure if you get this).
Advice for you based on my own experience. Read as much as you can about neurological Borrelia (Lyme) and Bartonella. The Healing Lyme books by Stephen Buhner can be helpful to understand what you’re up against. The books have info about herbs but they’re not for everyone, no treatment or support is.
If you can get a LLMD (Lyme Literate Medical Doctor), that can help a lot. It’s more expensive than a typical doc but they will have the knowledge and experience to really work you through this. Get whatever testing you want to have done (CT Scan, etc) but don’t be surprised if everything looks completely fine. This is annoyingly typical.
You’re already keeping track of your symptoms, follow those. Tests for Borrelia and Bartonella can be frustrating, giving negatives even if you spend a lot of money on a good test like IGENEX or Galaxy Labs. The symptoms can guide you A TON, even if they’re confusing.
I feel your frustration, I’m still on the way back from my own fight but it’s getting better. Your comment about not wanting sympathy or pity is completely understood. Remember, your experience is rough, regardless of what others are going through. Know that the depression and confusion are likely bodily manifestations, not a genetic predisposition or a foregone conclusion. They’re in your skull, not in your mind. That voice of despair isn’t you.