New month, time for my next visit. My doctor had me come in previously because some of my pee tests had blood in them. Weird, but whatever. My blood work test results had came back in and I was CDC and ISDA POSITIVE for Lyme and he had emailed me with those results and suggested I bring Dave to my appointment to hear it all.
He went through the Lyme spiel with Dave and explained that it would probably be a long time of antibiotics to get to a good place but had confidence that I could get better. I let him know everything that was going on and he added a few more supplements to the collection and started the azithromycin/omnicef combination. Hallafrigginlujah for getting off the doxy!
Once I first started my new meds, the “spasms” in my hands and feet had stopped and the fireball that was in my throat subsided. The nausea lessened. I would still body rock, kind of like an autistic person, but that was much easier to deal with. It’s not like that was “hurting” me… I just looked a little awkward.
I continued to have joint pain, numbness in my legs, and started to have a weird head pressure. I also developed a horrible light sensitivity. At one point I had to wear my sunglasses to watch TV, with all the lights out in my house. If I didn’t my eyes would be in so much pain I felt like someone was repeatedly punching me in the face.
Nighttime had begun to be terrible for me. I was awake for hours on end even with sleep aids. As soon as I got to bed, my mind was racing. My feet felt as though they were being stabbed with chards of glass. If I finally got to sleep I would end up having night terrors that would have me screaming bloody murder in the middle of the night.
My mind was even foggier and I felt really spacey. I had completely lost my memory, my ability to focus. When I say lost my memory, I don’t mean the “Hunny, where’s my keys?” I mean, I had to develop sticky notes as to where I was driving when I got in the car. My sticky notes for my car said things like “HOME” or “WORK” or “BANK”. I had notes to brush my teeth, put deodorant on, etc. I really was beginning to suck at my job as a bookkeeper, and my hours dwindled down even more as I could not handle it. My mind was MUSH.
I started to have weird occurrences (which I later found out were different types of seizures). Most of the time they would occur if I did “too much”. If I walked up a set of stairs, or tried to run errands, was when this would usually happen. My first occurrences were completely spacing out. I would sit and watch my new favorite channel, the TV guide channel, for long periods and be completely unaware of it. I would have no idea of what else was going on, what it said, or any concept of how long I was sitting there, nodding off into space.
Also, out of the blue, I would completely go limp, and not be able to hold my head up and I’d lose all function of my legs. This would usually only last for a minute or two, but the exhaustion was overwhelming afterwards.
I started to lose weight on the doxycycline, but weight continued to drop on the new medicine. I had gone from 125 to 110-ish. ( As I reference I am 5’4″, so not Etheopian skinny, just much smaller than I had ever been) I guess I would rather lose weight than gain it though, which I thought would happen as I spent all my days on my couch.
At the very end of the month was the start of one of my worst symptoms as of yet. I started to have Tourette’s like outbursts, like yelling, and my hands began to have a mind of their own. My arms would flail about, my hands would clench. I have recently found out from the neurologist that this is called myoclonus, but I am still waiting for the next neurologist appointment to review his findings for my MRI. This ‘tic’ made me completely not want to go in public anymore.
The rude stares of people, watching me shaking and walking, kind of like I shit my pants, was one thing, but drawing attention verbally made it so much worse. I am no stranger to people being rude as it is, after having a bad car accident, it left me with a large scar n my forehead which has faded a lot since my highschool years, but I got a lot of Harry Potter and Frankenstein jokes. I am glad now I have been a little more comfortable in my own skin with that, and as long as Dave helps me, and no walking is required, I can get out of the house for an hour or so without having any issues.
Ok. Let’s talk about the stuff I said I would share everything, so I will… lucky you, reader. I was warned that omnicef could cause severe diarrhea. I didn’t know that I might as well sit on the toilet while eating or drinking anything or moving at all. At LEAST 15-20 times a day. Poop Poop Poopedy Poop. All fucking day. My ovary cramps came back with a vengeance and ahem…yeast. (Not an uncommon problem with long term antibiotics. ) Let me tell you NOTHING is more embarrassing than contacting your MALE doctor and telling him you are baking sourdough bread down there and to give me suppositories and pills to help. I started sweating a disgusting amount and my face and hair became so oily. At this point I am officially the least sexy girl alive.