An update is LOOONGGGGG overdue on here so this post might be lengthy. So much has happened since my last post it’s almost unreal!!!😬😬😬 I will just take it back to about 4 weeks ago….
About a month after I got my picc line placed I began to get a little too ‘comfortable’ (best word to describe it) with my line and I began to exercise again and take showers. This turned out to be a HUGE mistake as I developed what appeared to be a rash under my picc line dressing. At first we thought it was a reaction to the type of bandage we were using but it just kept getting worse and worse over the course of a week. It was UNBELIEVABLY itchy and bumpy and just all around BAD. We concluded that it was a fungal infection/rash that most likely began as a result of me exercising and getting moisture under the dressing. So eventually my nurse put a dry bandage which is just basically gauze and we hoped the rash would just dry out because Fungus can’t live in air. That didn’t happen so unfortunately by Saturday it had gotten so uncomfortable and large that my nurse had to pull my picc line. The rash was horrible. It wrapped around my whole upper arm and it was blistery and disgusting. Luckily though it didn’t spread to inside my actual picc line hole. THAT would have been a disaster and a half! It was actually so worrisome that my LLMD Made a special visit to my house💚. He prescribed some fungal cream and for the next week my nurse would come and dress my arm with the cream. The itchiness eventually went away (thank god) and as of now my arm is ALMOST back to normal. (Yay). So that 2 week time period was pretty uncomfortable to say the least.
I was off IV antibiotics for a week and I could definitely feel myself slipping bAckwards. That was a pretty scary feeling. I got a new picc line put in my other arm on the 29th to resume my IV medicine. Since then I haven’t even tried to take a full shower. I pretty much ‘half bathe’ now😅.
Also, during the same time as this fungal picc line rash I developed anther full body allergic reaction type rash. I couldn’t believe it. I had two horrible rashes at the same time!!! This rash was different though. It wasn’t as itchy and it was spread throughout my chest, stomach, back, and left arm. This rash started on Sunday and it took us until Friday to determine the cause….I am allergic to BACTRIM!! I had been taking it for 2 months already but Bactrim is a really weird drug and it is actually common to develop an allergy to it after being on it for awhile. Almost immediately After stopping it the rash went away. I will never take Bactrim again!!
I absolutely cannot stand having a picc line. I think they are more miserable than the actual disease itself haha. I can’t shower or wash my hair (I go to best cuts and have a lady wash it for me:/), I can’t exercise, and I can’t really use my left arm at all. It is actually pretty debilitating having it. I know i sound really whiney right now but I cannot do it justice how much it SUCKS having a picc line. After my first line got pulled we made the decision that I would be getting an internal chest port placed after my rash cleared up. We didn’t think it would be good to be off IV medicine for that long so I got this new picc line placed while the rash heals. Since the rash is basically fine now we are planning to get the port placed either this Friday or next Monday. Fingers crossed.
As far as medicine and symptoms go I switched my IV Doxy to IV Zithromax last Thursday. I do 375mg everyday and I am still doing IV rocephin 2g 3x a week. I also added cats claw. I am still improving on the IV a lot faster than I did on the orals. (Despite having that huge rash setback). I don’t seem to herx as bad on the IV as I did on the orals. Overall I’m really glad I did IV. I am hoping that by having a port and being able to have it deaccessed some of the time will make my life easier (and my hair cleaner🎉🎉🎉).
Living with Lyme you literally never know what to expect. It’s crazy all the problems that can happen and how random they are. Lyme really helps a person to learn how to adapt and deal with different problems.
That’s all for now but I’m sure somethig else will happen soon worthy of an update!! I’ll try to keep you posted if master Lyme allows me to 😉