November Part 4 – Start of the 4th Protocol

Cipro and Zithro IVs, Septra DS, Artimisinin, Mepron, Xylitol, and Lactoferrin. Ready, set go! Of course, as I go on, I will be adding more antibiotics to these, but starting “small” (sarcasm).


Work was optional. I finished what I really needed to on Sunday, and my Dad (my boss as I am the bookkeeper for his business) understood that it could be a really bad day.


I got up somewhat past my alarm but not too much, fortunately. This was a change for me. 


Before I even dared to do my Cipro IV, I popped a Marinol to try to combat the nausea. My IV time was super fun. I did a lot of venturing, which I have never done before. I tried once and the pole was not high enough so blood came up my line. The only other time my friends helped me go to the window since a friend was setting of a few small fireworks in the back yard.

About 10 minutes into the IV… oh shit, I gotta shit! Wheel myself into the bathroom, do what I need to do, then back to the couch. Then the phone rang. Wheel across the living room to our cat house, which is now accumulated with mail and junk, so our cat Lucy no longer has her place to lay. I have the feeling this IV is going to slim me down. LOL


After my meds, all I can say is oh my god. I felt the bomb in a million ways once I took my giant cocktail. These feelings were those I wouldn’t wish upon anyone. So loopy. In pain. Bed, Bed, Bed. That’s what I wanted so badly. I was running behind even though I woke up at a decent hour as it took me forever to do my IV, take all my medications, and just plain get ready in the morning. Hairy armpits a getting your dressing change is cool, right?


I didn’t know if I should drive.. probably not so I rested before I had to leave for awhile and kept thinking mind over matter, mind over matter. You can do it. And so I did. I had to stop at the pharmacy  to pick up my scripts, including Nasonex for my dressing change. It contains antihistamines so maybe it will calm everything down. As you have seen in previous posts I have had some tegaderm issues. Luckily I don’t have to drive very far and I am usually not that bad and have gotten a few rides when needed. 


Even though I was still pretty much in the same state of feeling loopy and in pain, I had no choice but to rough it out. Remember, I am a rockstar. Mind over matter is a powerful tool to accomplish and conquer. 


As soon as I went outside to my car the sun even with sunglasses caused my head to feel like it was going to explode. Needles in my eyeballs. my eye sockets just plain giving me a big “fuck you”.  Okay. Not cool. SEVERE light sensitivity is back. Fabulous. 


My dressing change was a disaster. My skin was raw on my tape part of the tegaderm from itching and bleeding , (pics on past posts) so it was starting to get infected looking. And now although my insertion site looked okay, there was a pus leakage from it. Luckily, it appeared to be dry like it had done it a few days back. Yummy. Hope you weren’t eating while reading that.


My new plan is to try the Nasonex where the tape is. And she moved it as much as she could to try to get my skin to heal up a little bit. 


After my dressing change, I had a slight burst of energy. It was time to get a coffee.  This time I held it for dear life in dear I was going to drop it again. And no spills this time around 😉 I decided to dub at work. My life is a simple one these days haha. I don’t have the chance to be adventurous so that’s about all I can do for excitement. I went to work and finished a few simple things and cleaned up my desk a bit. By the time I got home, I was starting to fade again. Stress didn’t help.


It didn’t help getting a zillion medical bills in the mail.  


Luckily it is the balance that my insurance didn’t pay for dressing changes and bloodwork. My mind is stressing out since I am already battling with the hotel I usually stay at, as they charged me twice, and an additional 50$ charge, and the desk person doesn’t have a clue, and literally no one will not respond to me, as I e-mailed the manager, and Dave called and left a message with accounting. Honesty here ( I will be that rude one and do a blog about the cost of Lyme this year once 2013 is over with… because I think people should know! And to take it seriously!)… I don’t even know if I can book my flights until I get that money back. Getting close to maxing it out. That is Lyme. $$$$$


A disgustingly expensive, misunderstood disease. Many need to travel because they can’t find a doctor to treat them! Mainstream medicine is completely wrong with their head up their ass. One day I hope Lymies can go to a hospital and not be judged, and those who might have Lyme get proper testing (western blot or PCR antigen testing), and the treatment they need, not a month’s worth of doxy and you are cured. Insurance pays for everything.  A huge reason why I share my story in hopes people will read and learn. The more stories maybe people will realize this is a very real nightmare that too many people face.   *End Rant*


As Dave calls it, I had the weebles wobbles once again, and my knees and hands were on fire. I felt like I was above my body doing all my actions and speaking, if that makes any sense This comes to me in waves, exactly how I say it, there is a wave that comes over to me and then my mind and body are just there. With me above it.. I believe it is called depersonalization. Either way, for some reason I weeble wobbled into the coat hanger and slammed my shoulder, knocking half the coats and sweatshirts down. But hey, “weebles wobble but they don’t fall down!” And I didn’t technically fall .;) 


My Zithro IV was long once again. I think you all know that by now 🙂 I ticked a few times and I was wide awake yet half asleep even after my sleep meds so I decided to do some writing. 


Right when I knew I would be able to fall asleep in bed, I began to freeze. My house was 80 degrees  because the wood stove is cranking, but I touched my feet and they were like icicles. A picture of my hands earlier in the day. I was not as bad earlier in the day temperature wise, but starting to get cold. A lot of blue/grey. 


Lastly, the bugs came back once again. Thanks Cipro! I didn’t miss it when it went away as soon as I stopped it the last time. Spiders in my hair. crawling around in my peripheral vision. Scratchy scratchy!!! Maybe it’s a Bartonella thing. I have no idea. 


Overall, I had just a few short hours of “being me”. Aware. Not feeling like my head was using a remote control to try to get things that weren’t working to work right and be able to speak. Not having the look of death. Now that I have a taste of what is yet to come, I am not excited for this protocol. But by the end of it, MORE hours “being me” are to come! I just know it. 



4 thoughts on “November Part 4 – Start of the 4th Protocol

  1. Kim, I have the crawly feeling on my skin too! Also, the feelings of spikes in my eyes when the sun hits them, even for a second…Did not test positive for co-infections, as you mentioned it may be a Bartonella thing for you…but, as we know, bloodwork is so unreliable…Seems like your team has you covered, though! Your antibiotic rotations are impressive…I’m on very small dose antibiotics (100 mg Minocycline daily, and Azithromycin 250 mg daily)…I keep thinking this is inadequate and my Lyme disease is being undertreated. I always look forward to your posts, to see how you’re doing, await your improvements…and you sound really good, as though you’re turning a corner and feeling very optimisitc! I hope you enjoy more hours, days, weeks, months and years of “being you” again! Best~ Lisa

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