March 2013 Part 1 – IV Rocephin and Return of the Cipro

I was all done with my Erythromycin. I had a visit with my neurologist and he said I definitely still have Lyme, but wanted to have his name off of the IV treatment. He told me 30 more days and that’s it.  Unfortunately, the way it is with the treatment of Lyme, many doctors don’t want to treat long term, fear of long term antibiotic use or persecution from long term treatment. It is what it is. 

 The same day I saw Dr. S., and he really wanted to incorporate oral medication with the IVs and make the most of treatment. 

 He decided to try Cipro again; with thoughts that maybe it was my gallbladder that was causing me to be so ill, and not necessarily the Cipro. Part of it was definitely the Cipro, as I was about to find out.

 Within the first 24 hours of restarting my Ciprofloxin, I was a hot mess. My whole body was shaking like I had advanced Parkinson’s, my body rocking was back and felt like I had the worst flu like muscle pain I have ever experienced. My verbal “tics” were out of control. 

 During this first day I decided I’d have to skip my Thursday night ritual of wings at Jo’s. All along I have tried to make my 4-5 10 cent wing special, but there had been quite a few times that Dave had to go without me. It was defiantely one of those days.

Dave came home with some dinner for me and had a mortified look on his face as I was struggling so much just to hold the fork to eat my salad. My hands were shaking so much and my body was rocking back and forth while I was sitting at the kitchen table. He kept asking me, “what can I do, what can I do?” and the look of sadness on his face made me feel horrible because I wished there was something he could do to make it all better. 

 After a few days, the scariness of beginning the Cipro began to wear off and I was leveling out a bit. I wasn’t rocking and shaking quite as bad and began to have a little more life in me once again even though I was still very weak and had a hard time walking and being on my feet. My speech issues, however, had continued to get worse. I continued to stutter and my head was in such a fog I would begin sentences and often forget what I was talking about. 

 I never looked forward to nighttime. I would always find myself in a half awake-half asleep state and I started to develop anxiety and panic attacks in the middle of the night. Even if I had a relatively pain free day, the second I hit the bed my fingers and toes would begin to be in excruciating pain. It was impossible to find some comfort. I craved sleep; I needed it so badly. Once I would finally find a way to sleep, I would often not wake despite the alarm I set, for work. My Dad has gotten use to my being late, fortunately, and was reasonably tolerant. Most people think that it would be the easiest thing to work for a parent, but that is not always the case. In my case, I feel like my Dad expects more from me, so it is hard for him to grasp what I am capable of right now. At this point, I am fortunate to have the career that I do, because I would not be able to work a 9-5 job. 

 The nausea that I was hoping was solely from my gallbladder returned to me. I also began a supplement, called Allicin, which is basically really strong garlic, so I was hoping to blame that. Constant burping of garlic and garlic heartburn did not help the nausea situation AT ALL. It was so frustrating, I would actually look forward to throwing up in order to get some relief, but the nausea never went away once I threw up. It was like clockwork. About 45 minutes after I took my pill every morning and night I would throw up. As time went on, I started to get sick every time I ate or thought about food. I would have to prop my head up at night in order to not have the awful feeling in my throat like I was choking and try to hold myself back. My mouth was constantly watering and every single smell in my house intensified. 

 I was having more frequent seizures and many different types. I would often stare into space, an absence seizure, or my body would become a limp noodle, which I believe is an atonic seizure.  I also began having issues in which my body would turn into a “mummy” and I was completely stiff. Most of the time these never last a long time, but afterward I would be so exhausted I would sleep for 14 or 15 hours straight without getting up a single time. 

 I was also having a lot of emotional issues, which could possibly be simple partial type seizures that I could not control. One of my newfound emotions that I have continued to deal with is extreme fits of rage. This is actually fairly common with people that suffer from Lyme. Whenever reflecting among my Lyme rage, I think of the movie “Mean Girls” with Lindsay Lohan and best describe it as “word vomit”. I literally have no control over what comes out of my mouth. Some of the things I say I want to smack myself afterwards because I can hear myself saying things, but cannot believe it actually came out of my mouth. 

 One example, which I feel horrible about, if you know me I really AM a NICE PERSON, there was a heavyset woman that started crossing at the local grocery store/bank, and I had to wait for her to go by. Of course, because of the hot flashes in the middle of winter my window was rolled down and I could hear myself screaming at her calling her a “fat c*nt” and told her she should hang herself. That is absolutely horrible and I literally have zero control over it. 

 Another “seizure activity” I would spend an entire afternoon uncontrollably crying, and would not know why I was crying in the first place and not be able to stop. I hated when this would happen, as it would inevitably lead to myself having a panic attack because I wanted to stop crying but couldn’t. 

 One of these experiences had to have been one of the scariest, worst days of my life. One day, when Dave went out of town for one of his mud truck events, I had another episode, which I will blame on myself. I had overdone it. I desperately wanted to rent a movie, and tried to walk into Harvest Market (the local grocery) to the red box to get the movie. I don’t even know why I had tried to do this, it had been since the beginning of September I had as much as walked into a grocery store. Anyways, I made it about half way into the store and began to feel intensely like I was going to pass out and felt like the walls were closing in on me. My vision began to be blurred, very much like tunnel vision. I barely made it to the car and rested for about 20 minutes or so before I made my drive back to my home, which is about five minutes away. As soon as I pulled in my driveway, I could feel the tears begin to flow down my face. I still don’t know if it was a partial seizure or the pure frustration that I couldn’t even do the simple task of walking into a store and renting a movie. I was sad and frustrated for sure, but I am not much of a crier. I made it to my couch, movie-less, and the uncontrollable tears came as I lay there by myself.

 The tears led to a panic attack then it all stopped and I began to have that mummy like feeling throughout my body. My hands were in an unnatural state in which I could not even show you ( I call them my raptor claws), my body was like a rock but I somehow managed to slip off the couch. I was paralyzed, I couldn’t speak, call anyone for help, nothing. I do not know how long I was like this, but it felt like it was an eternity. Once the feeling went away, I took a long nap on the couch and woke up feeling incredibly lonely and sorry for myself not having anyone there, even though Dave was just out of town. That day scared me because it made me realize that no matter how independent I was or wanted to be, I no longer am. 

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