Update!!!

Sooo I have not been on my blog in two months?! So much has changed and happened!  Last time I wrote a blog I had a picc line and I was planning on getting a port a cath placed in my chest. I was able to finally get my port placed on June 3rd. The actual port insertion was not bad at all. It really was very similar to getting a picc line placed. The pain was about the same as well (which isn’t too terrible).

Getting my port placed

I’m actually surprised to say that two months later I STILL have my port in! With all the issues I had with my other two catheters I’m really surprised I’ve managed to keep this line in. However, (typical in sams world) I’ve had some issues with it… Won’t go into a lot of detail on here about what happened but let’s just say that  it is VITAL to have a good home health nurse if you have a central line..

Stupid.

So interestingly when my problems arose with my port I was not able to access my port for almost 4 weeks (today is the first day it’s been accessed since July 10). That means I haven’t had any iv antibiotics since July 10th. I have only been taking one antibiotic orally (rifampin). At first I was really nervous that being off all ivs would cause me to backslide almost immediately. However, the first two weeks I was off my ivs I felt surprisingly well. I felt almost almost normal and symptom free. Weird right? Saturday July 23 was the best day I’ve had in over a year. I was able to be outside in the sun and heat almost all day and walk around and have virtually NO symptoms. It was awesome and kinda weird at the same time. I’m treating this disease the least aggressively I have since the start and I feel the best??? Doesn’t make sense but ill take it.

Getting tan ☀️☀️☀️

Took this video July 23rd

On a walk around Akron

Now I wish I could say every day since that day has been the same with relatively no symptoms but sadly that hasn’t been the case. Toward the end of last week I started having more symptoms start to slowly creep back up which brings me to today: getting my port accessed by a new nurse ready to start back on IV doxy tomorrow.

My fluffy companion helping

For the past few weeks, (since I’ve been off doxycycline) I’ve been able to go outside and enjoy the sun and the warm weather like a normal person and its been AWESOME. I’ve gotten a tan and it felt so good to be able to lay outside after being cooped up inside since September 2015. I’m pretty bummed I’ll have to start covering up when I go out for walks during the day :/. BUT one thing I have noticed is that every time I go off doxycycline ~ 3 weeks later I start to regress significantly. Apparently whatever infection I have does not like doxy. The good thing is that I know it really helps me. The bad thing is that I have to goodbye to the sun. I swear there’s always a trade off with Lyme disease (Sigh).

 

Soooo starting tomorrow I’ll be back on IV Doxycycline 300 mg and IV rocephin 2g everyday for four weeks and then taking a two week break of all my antibitoics. I’m going to be doing a four week on, two week off treatment to help my body detox the bad stuff and to not overwhelm my body with all the medicine. I’m bracing for this weekend to be filled with some herxing 😁

That’s it for my update! Thanks for reading ☀️

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