September Part 10- DC Trip and New Antibiotic Protocol

The past few days have been really long, and I am so glad to be home, even though it’s a little lonely at my house since it was too late to pick up my dog at my parents. We got to Boston later than usual on Tuesday night, and after the long day of work, therapeutic massage, going home to take a quick bath and hair wash, seeing Dr. S, and scrambling to get packed up, I was already wiped out. 

 

As soon as we got to the hotel, I got in my pajamas and watched TV with Dave until we went to bed, around 11, which is actually early for me these days. We got up and ready and got through the airport pretty quickly, as I decided I wanted to walk instead of use a wheelchair. And so, we were able to hop on an earlier flight! I slept the entire trip there, with Dave having to wake me up even after we had landed.

 

What to do, what to do.. we had about 4 hours until our appointment, so we decided to do some sight seeing. We got dropped off at the Lincoln Memorial, and there are a few other monuments right there, like the Veteran’s wall, so we decided to take a peek. 😉 

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And this is how far I made it on the steps of the Lincoln Memorial. LOL Pretty sad, huh? My body said no.

 

I would have probably tried, but Dave told me it really wasn’t a good idea, considering I was turning off-color, shaking like crazy, and weeble wobbling all around. My body was already exhausted from the airport. At least he went to the top and took some pictures for me, being the good guy that he is. One day, I will make it up to the top. Once I do, I will know I am really better.

 

We sat for quite awhile to give my body a rest and until my legs decided they were going to work again. We then headed to the Veteran’s wall for a quick walk through and then took a taxi to a New Orleans style restaurant near Dr. J’s office that is delicious. Blackened catfish and collared greens. MmmMM 🙂

 

And so began my appointment. I was very unpleased to hear I not only gained my pound I lost back, but an additional one as well! Feeling a little porky now… 😦 Oink Oink. I am going to blame it on lunch. 

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You didn’t think you were going to read my month’s protocol without a classic Kimmiecakes thumbs up pose did you? I started my new IV of the month, Azithromycin. I have done the oral form with no adverse effects, but this is definitely going to be a rugged one in IV form, I can already tell. I can feel it in my body, almost like a hot sensation running through my veins. It is in a much bigger saline bag, and took about 2 hours to do. Ugh. 

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Here is Dave, taking a nap. Thank god he never reads my blogs, he would probably be pissed I took a picture of him. haha. I was bored out of my mind during the drip, and although I could have taken another nap as this IV seemed to make me even more tired than my other ones, I didn’t want to be passed out in case Dr J came in or one of the infusion nurses to check up on me. 

 

Awhile after the ridiculously long infusion, Dr J came in. We went over some concerns over the month: pain issues, rage issues, maybe thinking loud noises triggering it, the loopyness, the oral thrush, alternatives to Abilify, just anything and everything on my mind. Of course I forgot about my eye, and forgot to put it in my notes, but I will figure that one out on my own this month.

 

Dr J at least wasn’t mad at me when I told him about my Abilify issues and the fact it made my rage completely out of control and I didn’t go #2 the entire time I was on it. I asked him if there was anything else to take, and he said, unfortunately, probably nothing that would help me out.

What? There is no pill to control Kimmiecakes craziness and uncontrollable anger and rage? He said that a lot of the other prescriptions would likely not help me as they are pretty much the same thing. So he recommended that I could take Ativan more often and at a higher dose as I currently am not (I thought I was.. I take it 3 times a day). He said there is something definitely going on with my amygdala because of my severe responses. 

 

I also showed him what has begun on my feet since I stopped taking antibiotics. It has gotten a little better now, but all the skin is peeling on my feet. He immediately told me it was an ACA rash, a type of herx rash. I am wide awake but half asleep as I am writing this, so I haven’t felt like looking into it, but I will definitely look it up… maybe some research and a blog entry in my future?!

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Either way, it’s gross. I wanted to get a pedicure the beginning of when I stopped taking the antibiotics, but no one’s going to want to touch that. I showed him the big red spot on my foot, that I have had for a few weeks now, even before my break, that I thought was probably poison ivy and he said it wasn’t and it was part of the rash. Interesting. 

The oral thrush he did not doubt, especially since Dr S took a look at it, but he also told me to watch out for any weird discoloration on a day to day basis, as toxicity in your body can make your tongue change yellow or green as well. Good to know.

This month’s protocol is different than the rest of mine. I am happy and not happy about it. I am psyched that I don’t have to go down to DC for 6 weeks, and have TWO off weeks, but I am going to get beat up during my pulse treatments. The new protocol goes as follows:

 Week One – Monday Wednesday and Friday – IV Clindamycin AM and PM, IV Zithro at night only, Septra DS, Mepron, Artimisinin

 

Week Two – Same as week one, add my best friend Flagyl on Thursday and Friday. (That Friday I am probably going to hate my life)

 

Week Three –  OFF (No beer and brownies for this girl!)

 

Week Four and Five – Same as week one and two

 

Week Six – OFF and return to DC

 

So a total of 6 antibiotics during this month. Poop on a stick. That’s a lot. I was already forewarned that this month will probably make me nauseous, which I am not looking forward to as I have been nauseous every single off day that I have had this week. 

 

I lastly told him that since my treatment with him, even though it has been two months, my worse days although are pretty bad, they are not nearly what they were, and that my better days have been better than I have seen in months.

 

 I told him my tics are not even remotely as bad as they once were, even though I did through in a yell and a hand clap, and a few thriller moves during the appointment, but I have definitely had leaps and bounds of improvement as I can go almost an entire good day without bouts of tics.

 

Dr J told me that I have a long way to go, but I was making good progress and said I was definitely headed in the right direction and I was responding to treatment extremely well. Maybe it is because I am already a year into it, maybe it is because the pulse therapy is a better choice for me, but I will take any good news. 🙂

 
 🙂 To some of you good morning! To some of you goodnight! 

 

4 thoughts on “September Part 10- DC Trip and New Antibiotic Protocol

  1. Kimmee, I read your blog and wonder if all this will work. I really do, you have a terrific spirit. I chose the unconventional approach with alternative methods (no antibiotics). I am doing good, accessing daily what my body needs to keep getting better. I am curious about this protocol you are on because our society relies on western medicine and hopefully your doctor’s protocol will help others. Thank you again for sharing.

    • I am so glad that method is working for you! Anything natural that is helping is a big bonus.

      I have done a few natural treatments and it didn’t seem to make a big difference for me, but my naturopath seemed to think it was because of all my neurological issues and the IVs really help penatrate the brain barrier better than anything else.

      I think that his protocol will eventually become the thoughts of many Lyme literate doctors that will emerge in the future. The pulse therapy, although very aggressive you get a break so you aren’t killing your immune system and your organs quite as bad. He is one of the best, with people coming from everywhere to see him, and he has a 90% success rate, which is beyond amazing.

      I am hoping once I am finally on the road to remission, I can use naturals only as a maintenance therapy ( I will likely have to be on some treatment forever as a preventative from relapse)

      And thank you 🙂

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