Dr. S. originally wanted me to be on a combo therapy, being cipro/the IV rocephin and adding flagyl, but obviously the Cipro/ Rocephin combo wasn’t doing me any favors, especially in the nausea department. Dr. N. wanted to up my IV dosage of Rocephin, as I did not have much time left until the neurologist wanted the picc to come out. So now it was time for Flagyl and the increased dosage of Rocephin.
Surprise, surprise; always something new, and weird everytime I started something else. It seemed like lately every time I started something new I started my period again. 2 weeks of the Cipro, now onto Flagyl, period again. Dr. S. warned me of bathroom issues with the Flagyl before I took it and thank goodness it was no worse than the usual.
My tinea versicolor rash seemed to get much worse on the Flagyl, which would indicate that I was having a yeast problem. I wasn’t having any issues below the belt but there was definitely some skin issues going on as well as the fact I often looked either ghostly white or as Helen liked to call it, “My fifty shades of green” face.
My face muscles started to become very odd, almost like they were pulling down. Kind of like the beginnings of Bell’s palsy, but it wouldn’t last all day, just for parts of it. I am a very attractive girl when this happens. Dave has given me the nicknames “Stroky” and “Rocky Balboa” when my face wants to behave like this.
Another part of my attractiveness was my newfound drenching night sweats. Dr. S. had mentioned the possibility of going on a babesia treatment, another co-infection, due to the shortness of breathe and excessive sweating issues I was having.
Sometimes you don’t think of the cause and effects of things, especially if you are ill you just think of in the now. In this case, I didn’t think of the fact that I would often wake up pretty soaked in the middle of the night with sweating.
I like to experiment with my hair, and change it up as often as possible. My good friend, Sarah, who has been so great to me throughout all this, is also my hairdresser. She has helped me tremendously, with having the Picc line in and the difficulties with showering, she has been my designated hair washer so I don’t have to feel or be any grosser than I have to be at this point.
I wanted blue hair. Well not all over like Marge Simpson, but on the bottom part of it so it would be just enough to peek through. She gave me the instructions of ‘just wait until I wash your hair again’, because I had to separate the blue from the bottom in order for it to not “bleed” into the rest of my hair. Well…. forgot about those drenching night sweats and the following day after having it dyed, the rest of my hair turned a lovely shade of green pea soup. It kind of matched my face at that point.
On Day 3 of the Flagyl, I began to have the wonderful sensation of nausea again. I had finally spoken with Dr. N about my line coming out, and she decided to up my Rocephin dosage, 2g x2 day. I was also still taking my supportive IVs, so sometimes I was “hooked up” for 2 1/2 hours a day.
I feel like I might have been overdosing on the antibiotic. I am not a doctor, but I am pretty sure that vomiting during your second 30-minute push of Rocephin is NOT OKAY. I am not sure if antibiotics should go by weight or how one would measure the correct dosage, but it was definately way too much for my then 105 pound frame.
At this point I had kind of dismissed my seacoast doctor, Dr N. Dr S had communicated with her about my care once or twice before, and I feel like she was in a competition with Dr. S about my care and started to act pretty unprofessional to me on the phone in hopes to keep me as a patient. I think she was hoping to win some gold stars for “curing the really sick lyme girl”, as I was her first actual PICC patient, or so her staff told me anyways.
Bad mouthing my Dr. whom was the first person to listen to me for years, actually figured out what was wrong with me and has been so helpful along the way isn’t going to do you any favors. Silly her, Dr. S. would win that fight either way. He is just way more awesome.
It was also discouraging as I was starting to consider seeking help outside of NH to incorporate neuro meds along with different IV’S i had not tried before and she told me she could get me a new line at a different hospital but would only offer the rocephin, but I would need another lyme test to make sure I still had it. What?! She also at that point told me although she respected me to seek another opinion, it would be a waste of time because she was more knowledgable than most about lyme. Goodbye Dr. N. It’s been real.
I was starting to have some new pains that I was not use to having. I kept getting weird pain and pressure on the back of my skull; my massage therapist told me it was connective tissue that was bothering me.
I was starting to experience chest pain again, but not the usual chest pain. This almost felt like my heart itself was hurting, if that makes any sense, and I started blacking out once again and constantly feeling short of breath. Like I had run a marathon, but at most it would be a walk from my kitchen to the couch, or my couch to the bathroom.
At this point, I could not wait for the Picc line to come out. I wanted to shower like a normal person. I couldn’t wait to feel the warmth and just stand there under the hot water. I counted down the days until my line was ready to come out.
( As you can see, my dog, Chance, was always pretty excited when I did my IV’s. On the little table, you can see my supplies and the syringe that is standing up, that is what I would hook into my PICC line. Every time I did my IV’s, he would come running in all excited when he heard me opening the package for the saline syringes because he knew I would squirt him with the last little bit of saline from the flushes. At least he was having fun with it all!)