What are your weird symptoms?

Hi, I'm new to this site. I've had Lyme since I was 13 or 14 years old or maybe even earlier. I was always getting bit by ticks because of where I live and how much time I loved spending outdoors. Anyways I'm 25 now and whenever I happen to read up on Lyme symptoms I find weird symptoms that I had just thought where just me not Lyme.

What are some of your weird symptoms?

Mine are this buzzing sensation that feels just like my phone vibrating but my phone isn't anywhere near me. This weird heaviness that I usually get when trying to fall asleep. It also feels like parts of me are bigger or smaller or heavy and I always feel dizzy with it. Really cold hands, colder than room temperature. Weak tooth enamel, luckily no tooth pain. Of course I have most of the usual symptoms too but these are the ones that I didn't peg as Lyme Disease for a long time.

Sundame,

I get the same head symptoms too. Sometimes it feels like my head is way too big for my body. I also get tingling, ringing (ears too), buzzing, itchy scalp, and random sore spots. My LLMD said head problems can be a symptom of Lyme and many of the co-infections. I also get cold hands, eye soreness, and gums/jaw pain.

The strangest for me was when it hurt to brush my hair. I have mid back length hair and it felt horrible to brush it. I wore it in a bun all tangled up for a few days. Then *poof* that symptom went away. It came back a couple of times but hasn't now in months. I thought it was so weird.

Welcome to our community, Sundame!

Sorry you have Lyme Disease, but glad you found us here!

Early on in my symptoms - I had the vibrations - in my upper body. When I told the Doctors - it was like I was telling them I had a third eye.
I would say it was like my finger was plugged into an electrical socket.
Later on, I got the vibrations in other areas of my body...oh joy!

The other one I have is shivering - when I'm not even cold...but even worse when I am cold.

I believe they are both nervous system related...and part of my bartonella symptom package.

Do you have a LLMD to treat you?

Because you are new here, you should take a look at the "New to Lyme?..Start here!" thread at the top of the page - lots of great information in there.

The popcorn popping - sounds like muscle twitches (or fasciculations).

I get the head tingling too. Before diagnosis and treatment my whole face and head would get numb and tingly. The worst! Luckily now it's mostly just my fingers occasionally. For me on my face it was mostly focused on my mouth and would spread out from there.

I also will get grooves in my skin like you do when you sleep and had something digging in but it happens really quickly for me. It's really annoying and kind of painful if I sit in a chair that is wicker or just not totally smooth.

Hi Sundame!
Welcome to our community! I'm so glad you found us.

With a title like this, I just HAD to share!!

I had the things mentioned plus walking into walls - not occasionally either. It was very embarrassing how often I actually did this.

Trying to set things down and although I was paying attention, I would end up tipping whatever it was over just as it came in contact with the surface I was trying to place it on.

Biting the inside of my lip frequently.

Disorientation - in my own home! I would forget where the bathroom was even!

Putting things like the milk in the pantry, and the crackers in the freezer.

And I would be sweating on the upper half of my body (waist up) and freezing (goose bumps and all!) on the lower half of my body all at the same time.

Narcolepsy

Every inch of my skin being on fire for months. I couldn't wear clothes or even shower. That got tricky! LOL!

The more serious rather than annoying:
seizures

muscle fasciculations so severe that I would "bounce" off of whatever I was sitting or laying on

numbness so severe that I would sew my fingers to the back of the quilt I was working on, or being able to wash dishes in water hot enough to sanitize dishes (170 degrees) and not hardly feel anything more than "warm" water.


And as Girlie said, if you haven't yet, please do read through the "New to Lyme? Start here!" thread even though you aren't "new" to Lyme. There is a ton of information in that thread.

Also as Girlie asked, do you have a doctor?

Ack accidentally pressed submit anyways when I did IV antibiotics I could smell and taste some of the antibiotics and saline tastes and feels cool sort of like a breeze that moved through my body.

When I was really bad my hands would curl up and I would just randomly move body parts. I could stop the movement if I focused but when I stopped focusing I would shake my hands or head or arms or something. Happened a couple times in class in college. Not fun!

Echoing Girlie's thoughts here - and please don't assume that you have damage you just need to live with. I was undiagnosed for 37 years and untreated for 40 years by the time I found what worked for me, as I'm an abx failure.

Nerves are what take the longest to heal, up to 7 years, but don't give up hope for those to heal as well. Almost all of my nerve issues were gone - until I got reinfected and now I'm back in treatment again. But I WILL heal again and my nerves will also heal again, because I done it once and refuse to accept anything else this time as well.

Many choose to transition to herbs after treating with abx, and find that they have even more improvements. No one here will push you to do herbs, but if you've spent much time on here watching to see who uses what, you'll notice that many do use herbs either along side of their abx, finishing up with herbs or use an all herbal protocol. Maybe it's something for you to consider?

My concern is that you said treatment is 'winding down' for you...but it does seem like you have symptoms that could be active infection.

Do you mind me asking how long you have been treating?

The eye socket feeling of being pulled. ..pirannas on ankles...did iv abx help...did you do clindamycin?

I've been treated for 5-6 years now and did IV antibiotics for about 9 months of that. I think I may be kept on for 6 more months probably. My llmd is also a bit concerned that I'm still not great but I'm much much better than I was and I've been plateaued health wise for about a year now. I'm still reactive on antibiotics but I wonder if some of it isn't just intolerance for antibiotics instead of herxing.

@sweetpeaisme glad I'm not the only one with that weird symptom! To me it always reminds me of the way my Mom described the one time she tripped on LSD. She was a hippie during the classic rock and roll era, she said it felt like parts of her were bigger or smaller and heavy and that if she stepped out the second story window her leg would be able to reach the ground (hence the single use only). I also had really bad vertigo early on. I even went to a ENT doctor for it. For me I felt like I was spinning instead of the world spinning. Like the world was flat and stable but I was just off from it. Did you ever do that heavy leg fall because your brain told you the world was closer than it was? It's a really disorienting feeling.

And the thing is I knew just two years ago that my eyesight was completely different. My eyesight went to crap after a meningitis like episode due to Lyme.