there is an old post on here somewhere about "wierdest" lyme experiences we have had. it got really long...but i can't find it. does any one know where it is? i have a friend who has something to add to it. thanks.
Posted by mlkeen (Member # 1260) on :
I don't remember the other thread.
Our weird lyme experience is that we are well! My son has been symptom free since last Spring and me since the summer.
He completed his Eagle Scout Award and has been accepted at Penn State for Engineering. He was a very sick camper during ninth and tenth grade.
I hope that others can have this "weird" lyme experiance too.
Mel
Posted by lpkayak (Member # 5230) on :
hmmmmm. so no one else remembers the post? i can't even think what my wierdest experience would be...maybe when i got my words mixed up and told the kids to "get in the oven" when i meant "get in bed."
Posted by AlisonP (Member # 7771) on :
I think my weirdest one is that I see yellow -- pretty much all the time. Not mild, light, pastel yellow, but bright, shocking, highlighter yellow whenever I look at a white wall or anything that has a white background. Usually it's not so bad, but when I'm herxing, or standing up, or I stretch, or change my blood circulation in any way -- whabamm, yellow.
Alison
Posted by Geneal (Member # 10375) on :
Okay I have a lot of weird symptoms, but a really weird one is that my ears hurt at night.
Just the outside of the ear. Not the inside. I've had this for a long time, but saw a thread on this not to long ago with Lyme and coinfections.
I mean it is like sleeping on cement the way they feel. I have to wait 20-30 min for the pain to go away so I can go back to sleep.
Geneal
Posted by mtnwoman (Member # 8385) on :
I guess it was lyme, but on a meditation retreat (in India) I kept heaing the song Old Susannah -- and the same time every day.
It was so real that I remember puzzling over why village Indians would play that evening after evening!
I read that there are musical hallucinations with Bb...
Posted by geniveve (Member # 8646) on :
hallucinations -- oh yeah. my worst symptom was seeing this death figure, you know, the one with the hood and scythe, tall and jet black.
i saw him (could be her, i don't know), in my bedroom doorway one night. it just floated.
scared me out of my mind. i thought lyme is going to kill me, this is a sign.
Posted by lpkayak (Member # 5230) on :
i really wish i could find the old thread about this...it was really long. it could make a book. then maybe we could sell it and start a fund for those having a really ruff time financially.
Posted by meg (Member # 22) on :
I barely remember it and did look for that thread using other names, couldn't find it!
Maybe it was titled something we wouldn't think of looking for....?
Posted by trueblue (Member # 7348) on :
quote:Originally posted by Geneal: Okay I have a lot of weird symptoms, but a really weird one is that my ears hurt at night.
Just the outside of the ear. Not the inside. I've had this for a long time, but saw a thread on this not to long ago with Lyme and coinfections.
I mean it is like sleeping on cement the way they feel. I have to wait 20-30 min for the pain to go away so I can go back to sleep.
Geneal
I have this one! It comes and goes but for a few days running I'll wake up with my ear bright red and hot and hurting (makes the whole side of my head hurt).
I have to stay up for a long time until it goes away. It's not the ear lobe just the cartiledge part.
I'm afraid to go to sleep a lot of nights because it could happen anytime. I took pictures of one ear red and the other normal to show the doctors. I figure how in the world would anyone believe me otherwise.
Posted by LisaS (Member # 10581) on :
i wake up in the middle of the nights and see spiders or black shapes. They mobve along the wall and then slowly disappear.
I was too scared to even tell my LLMD this one. I thought I ws going crazy until I read another post about this.
Posted by Nebula2005 (Member # 8244) on :
OMG My outer ears hurt, too! It wakes me up they hurt so bad to lay on them. They get bright red and hot and the skin gets chapped and swollen looking.
And they wiggle. Especially my left ear.
I think it's the seventh cranial nerve, and borrelia in the cartilage.
Several duck doctors didn't even want to look at it because it's too weird. I had one (supposedly LL) tell me I was "unique." I'm so freakin' proud, let me tell ya!
Posted by SouthernCO (Member # 11167) on :
Slowly walking less than 1/4 mile to another building for a meeting, by the time I walked up the stairs the floor seemed to roll under my feet as if in an earthquake. This was about 2 years after the initial infection and a few months after the weak knees/rubbery legs had become a permanent symptom, so I knew what the problem was. But that didn't make it any less scary.
Posted by Andie333 (Member # 7370) on :
Two five-hour bouts of full-body paralysis definitely got my attention.
I remember how shocked I was when I came here to post about my experience only to find that other pepole had been through something similar.
My other weird thing was suddenly being unable to write. Correction: I could write, but it was this weird mishmash-- words left out, simple words completely confused, sentences that made absolutely NO sense.
This was weird for me, because I'm a professional writer.
Andie
Posted by 5dana8 (Member # 7935) on :
chanting...but not in a good zen buddhist way.
If you've ever seen the movie "Nell" its that kinda of chanting. Not good.
Posted by bejoy (Member # 11129) on :
How about putting the keys in the toaster for breakfast?
Posted by surg (Member # 6937) on :
Seeing black shapes out of the corner of my eye that looked like black dogs and cats running around but nothing was there.
Now I have ringing in my ears a day before an earthquake. I have become earth sensitive thanks to a bug.
Posted by thomps14 (Member # 3334) on :
Rattling vibrations in my brain whenever I would almost fall asleep. Felt like my whole head was being electrocuted. Horrible, horrible, horrible.
Posted by meg (Member # 22) on :
Drooling and walking into door jambs....
weird huh?
Posted by CaliforniaLyme (Member # 7136) on :
I remember that seeing yellow thing- that is from Mepron/Babesiosis- there was a thread on that once and I had that- yes- WEIRD!!!!!!!!
I have had a few memoriable weirdnesses-
1. After IV Rocephin it took me a year to be able to really hike or walk and I was in our local Forest State Park which I live at the base of and I walked up on a log and crossed the stream. It was about 5 feet above the water. I did not notice anything weird about it. My ex husband said in a strange voice, "Sarah, what are you doing?" I said, "Crossing the stream!" in a (dummy!~) voice. There was nothing weird about it to me. He said, "Sarah, since I have known you you have been afraid to go 5 INCHES above something." I had a lfielong fear of heights, a phobia. and would react VISCERALLY to any height.
IT WAS GONE!!!!! Just gone, and has been to this day. IV Rocepihn took away my fear of heights and leads me to wonder HOW LONG I had really been infected!!!!
2. At the beginning when I still had Ehrlichiosis I had HUGE fevers and once I had a 104 fever for 4 days and someone was coming OVER! So I had TO CLEAN THE HOUSE! So I cleaned the hosue with a 104 fever!!!! So...
months later I was still FINDING things in the weirdest places. My daughters dolls I put in the FREEZER~!!!!! The next day my husband opened it for ice cream and was like, "Um, Sarah...>?" I had no memory of it because my fever had me in this delirium.
3. CHOREA.
The WEIRDEST body thing ever was chorea in my left hand. IT IS SO SO WEIRD. All of a sudden my left hand (or was it right>? I htink left) was MOVING BY ITSELF and it HAD NO BONES!!! Meaning it was moving like I haev NEVER EVER seen a hand move, snakey and creepy!!! IT WAS SO WEIRD!!! I just looked at it going MY GOD WHATS NEXT>? HOLY HOLY!!!!!!!!!!!!!!!!!!!!! IT WAS SCARY!!!!!!!!!
OH MY GOD!! THIS IS EVEN WEIRDER- I went just now to find an image of a hand with chorea and instead I found my body jolts- I had THESE too!!!
THIS IS WHAT my body would do too at the end before Rocephin worked- I would JOLT up in the are 2 or 3 FEET!!!! NOT the first picture on this page but the second of the boy!!!! YES that is my body jolts- so that was chorea too- "circle arch postion (arc de cercle) of a 12 year old youth afflicted with chorea major." THAT was creepy too- I would jolt upwards like a fish on a line!!!! 2 feet IN THE AIR!!! IT WAS CREEPY!!!!
quote:Originally posted by lpkayak: there is an old post on here somewhere about "wierdest" lyme experiences we have had. it got really long...but i can't find it. does any one know where it is?
Do a search with General Support.
Posted by Lauren M. (Member # 10868) on :
quote:Originally posted by thomps14: Rattling vibrations in my brain whenever I would almost fall asleep. Felt like my whole head was being electrocuted. Horrible, horrible, horrible.
I get this one too! I also get flashing lights, like a strobe-light is going off in my head. For the longest time I thought it was my heart-rate going up, but then one night I took my pulse during an "episode" and it was normal. But my whole body and brain feels like it's vibrating. Sooo weird.
Posted by Kendrick (Member # 10990) on :
I can pat my head and rub my belly. Just not at the same time.
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