Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Happy Sunday, everyone.
So for the past year and change I've been having odd symptoms -- actually even before that I was having strange things; all through 2014 -a terrible, TERRIBLE flu thing, stomach roiling, increasing anemia. I started having hot flashes I thought were menopause but they were not what other women my age described. I knew something was wrong and for the first time in a long life of ignoring the medical profession altogether I started showing up at the doctor's office.
Then...around October last year, I started to feel Very Weird. I thought it was bad sleep or I was just going crazy or getting exhausted. I felt a little off balance, couldn't think right, but I kept pushing through.
Then...November. A terrible stomach flu that had me doubled over going ow ow ow ow ow. It never let up, just kept sort of waxing and waning in intensity. Two weeks later I woke up with a swollen parotid gland. Never had that before in my life, it lasted a day and then went away.
Then the headache started. It was less a headache and more of a very bad place I never want to go again. It started right at the occiput of my skull and filled my ear with a pulse, pulse, pulse, pulse of pain. It felt like I had been shot in the head. My stomach was still roiling, and then...
A couple days later, I felt my left leg separate from the rest of my pelvis at the hip. It was as if some very important set of ligaments had just given way, and after that the same thing happened at the back of my neck. It was a slipped disc, but why? I was just sitting there.
By this time I was convinced I had meningitis but I didn't have any of the signs, just the headache. I went to the walkin clinic and asked for meds for an ear infection.
I have meningitis, I told the PA.
You don't have meningitis, she told me. You'd be in the hospital.
She wrote me a scrip for a week of Levquin.
My stomach calmed down. It was never much better but at least it wasn't waking me up at night from dreams that a leopard was trying to escape from my bellybutton.
So I took the Levaquin. My ear still hurt. My head felt like it was stuffed with cement.
Then...suddenly my face stopped working. This was odd. It felt like all the muscles at the top of my head had been soaked with novacaine. I could not lift my eyebrows. The only thing that worked on my face was my mouth. I could still talk but I felt very *very* strange. That lasted a while, seemed to get better until it was only one side of my face that seemed paralyzed.
For some reason no one I knew or talked to noticed any of this.
I went back to the walking clinic, and asked for Bactrim, which had always been my goto drug for ear infections. It seemed to help, but I went back again after seven days, this time for ten days of cipro.
That was the beginning.
If you're still here, I'll tell you the next thing.
A couple days later I was running across the street. As my foot hit the curb I felt something like hot glass running down the back of my neck. I seemed to have twisted something in my hip also, and as I mentioned before, even though no one else seemed to notice my entire face was not working right.
When I woke up the next morning I was ataxic. And I had pain like I had never felt at the back of my neck and my pelvis. I started sleeping on my couch in this weird way, with my arm stuffed straight down between the cushions so I didn't have to move my neck.
First ER visit. I was convinced I had broken my pelvis. There was this weird interaction with an ER doctor who decided to give me an emergency pelvic exam for no reason I can think of.
He sent me home with a prescription for Flagyl for bacterial vaginosis.
This whole time I felt drunk. I also felt like I was just this massive head attached to a body.
Second ER visit: I think I have whiplash. I get an xray of my neck, then an mri. The disc that slipped is "abutting the thecal sac".
Then the shaking started. At one point I was trembling up and down through my body while my head tremored back and forth. Also every day around 2 PM I'd get this sensation that the nerves inside my limbs were exploding. I started seeing a neuromuscular and craniosacral specialist. When she first met me she said:
Well. You're completely crooked.
Yes, my spine had somehow twisted and I was taking all the weight on one side. I would walk home from that appointment in near tears, not from pain, but because the noise in the street was somehow unbearable.
My eyes were full of floaters, weird, black, blurry things. The double vision came and went but all the vitamin bottles on my countertops looked like what 3D images look like before you put the red and blue glasses on.
When I would lay down to sleep at night, everything on me would vibrate. The only position that worked at the point was flat on my back with a towel under my neck.
My face turned red and swelled up, lymph nodes swelled up everywhere. That went away. I tried to exercise but somehow I had lost all my strength. My arms would tremble just holding them up, or holding them out away from me.
Then the sweating started. Sheets of water that would not quit. Then another type of fine trembling from the nerves. I could not stand up without having to hold on to something.
Time elapsed: Four months.
So I tried vitamin C to bowel tolerance. I thought if I had a virus I would knock this thing out.
What happened instead...well...
I started losing half my weight in water. I found myself lying on the floor of my apartment, ready to die. I did not know what to do, there was a strange metallic taste in my mouth and my bowels went into overdrive, expelling orange water.
I got up.
I went to the ER.
My temperature was 102. Blood pressure 225/120. I felt like the drunk person they haul in at the ER - I could barely communicate with anyone. The doctor there worked me up for everything in the world.
My potassium was 2.5, she gave me enormous potassium pills to swallow and, after finding absolutely nothing wrong, she sent me away with a piece of paper describing my condition:
Fever of Unknown Origin.
Oh, I was screwed.
I made the only decision I could possibly make.
Within about a week, using some kind of unknown, hidden capability to save my own life, I got my crap packed and quit Florida, flew back to Chicago and dumped 50 pounds of belongings on the floor of the upstairs bedroom of my brother's house.
When I got here, eight months ago, that was actually really the worst of it, My whole body vibrated, all the time, all day. I could not stand on my left leg. I could not raise my arms over my head without them trembling as if I was trying to hold up the world. I sweated like a banshee and convulsed at night, my whole body just contracting and releasing. Every time I moved there was an aftershock in my nerves and muscles as if bells were being rung.
Meantime, I developed endless, nearly intolerable secretory diarrhea. My bowels twisted, I sweated; basically a good part of my day was spent in unbearable belly pain followed by insane events at the toilet and at one point I began to think I was going to have to go visit the adult diaper aisle at the drugstore. Months of this went by. I could not have a conversation with anyone without suddenly being unable to continue due to the urgency of my belly.
This is sort of better. Now at least it only happens once a day and I can be somewhat functional in the hours surrounding it.
I obtained a new profession. Patient. All I have done for the past eight months is go to doctors who told me patiently, and really politely, they had no idea what was wrong with me. I had EMGs and Holter monitors. I've gotten the main line to an endless supply of benzos and heart slowers.
Two months ago, my gallbladder was plucked out of my body in four days while I was under the influence of pharmaceutical heroin.
I felt nearly normal for almost three weeks. Then I had a "bladder infection" and got antibiotics. I felt normal for another ten days.
So how do I know I have Lyme? Despite testing?
Remember back a million years ago when I took the vitamin c, ended up laying on the floor ready to die and then got the stupid piece of paper calling my illness Fever of Unknown Origin?
Well, after a while I figured out the Origin.
That was my first herx.
Posts: 2057 | From Florida | Registered: Feb 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You should copy this post and print it for your records. Date it.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
One thing you mentioned is that somewhere along the way you were prescribed Levaquin. Were you prescribed any other fluoroquinolone antibiotics (e.g., Cipro, Avelox) prior to that time? This class of antibiotics can do very nasty and very strange things to people some of which rival Lyme in severity.
Posts: 2 | From Greater Boston Area, USA | Registered: Jan 2016
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