November Part 1 – DC Appointment and 4th Antibiotic Protocol

 As soon as Dave and I got to DC we had one thing on our mind. Our favorite New Orleans style restaurant…. duh! I was trying to not worry since I really had no idea what the game plan was and I would know soon enough. Good gluten free food, to stuff my belly for the weigh in at Dr J’s. LOL

 

After we ate it was time to walk over to his office. Luckily, there wasn’t a lot of walking involved, since I was still half asleep from my nap on the plane. I actually remembered to ask for a copy of the previous month’s notes, since I never got them in the mail. His most concerning issues of September were: my ACA rash, no longer taking Abilify due to adverse rage issues possibly from brain swelling (he upped my Ativan instead), and my stuttering. Okie dokie. 

 

Then I read the last of the notes… IV Cipro. Oh shit. 

 

If you haven’t read my previous blogs, this Bartonella/Lyme treatment has been a terrible one for me. Nausea, severe ticking, body rocking, shaking so much I couldn’t even hold a fork. Bathtime assistance. Wheelchair necessary to go more than a short distance. Seizures. Chest pain. The antibiotic that I had briefly given up all hope and thought I was going to die in my sleep because I was in so much pain. 

 

Everything that I had feared was on this one piece of paper. When the infusion nurse saw the fear in my eyes looking at her paper that said to start the Cipro IV, she said she might see what she could do if I couldn’t tolerate it. I told her my past experiences were terrible, but I was going to go forward. It was obviously doing something, even though severe.

 

I needed to keep in mind, I was in a different place then. A very different place. I was tremendously worse as my immune system was completely shot and I had so many deficiencies and toxicities that my body was a wreck. That is not me now. Be brave, KimmieCakes! And that I was. 

 

And on another good note, not that I am overweight, after stuffing my face with our New Orleans good home-style cooking,I lost two pounds. Wooo. Probably would have been 5 if I didn’t just eat the equivalent of a man versus food competition. Don’t judge. If you ate there you would do the same.

 

The infusion nurse gave me a Zofran before I did my IV, and I instantly felt a feeling like I was completely out of it and wanted nothing more than to curl in a ball until it was over. And then probably after. Dr. J came in as I was doing the IV. 

 

Did you think you were going to read without my classic thumbs up pose? Of course not! 😉 

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I told him my concerns of the month. The rage and crying. My extreme stomach pain that radiated to my back on my left side. The exhaustion. 

 

He was immediately concerned about the stomach and back issue and felt around my stomach and back. He pin-pointed the exact spot that was causing me pain. I actually kind of wanted to punch him in the face as he got it right on the dot. 

 

Neuropathy. Nerve pain of the spine. He discussed what to do about it and upping the neurotropics was the option to try to get this pain under control. He told me I couldn’t up my Gabapentin anymore since I was already on a really high dose so upping my Lamictal was the next option. I was so relieved he figured it out, and no bloodwork had to be involved. Hopefully this will do the trick. At least I know I tolerate it well and it is not starting something new. Fingers crossed!

 

I asked him about my heart medication since for some strange reason my cardiologist is dropping me and gave me limited refills. I was diagnosed with tachycardia. He said once Lyme and co-infections are treated, That should go away and my heart rate should stabilize. So he told me to try to not take it and just use if there is an issue. Another fingers crossed. 

 

Dr J started to discuss what the next move would be for me. The Cipro IV and my hated IV Zithro.  It sounded like he wanted me to do the Zithro in the morning but I gave him a big no way! He asked why, and I told him it was because I have to work, and I am already always late. 

 

He looked at me in surprise and somewhat baffled. “You’re still working?!” 

 

Umm.. yes I am. I explained to him my flexibility and I would probably be fired at any other job but am still able to get what I need to done. I am going to make the assumption a lot of people that are going through what I am are no longer working by his look and comment.

 

For me personally, it helps me feel normal. No matter how I feel, I try to get everything done. I go crazy when I am just sitting on my couch, even though I really can’t do much of anything other than stare into outerspace. It makes me hate everything and lose positivity when I don’t try to at least feel like I am productive. I literally have dragged my body out to the car, throwing up in my driveway and have made it to work. It is just how I am and who I am. I use to be a workaholic. Now I work 20 hours a week on average. And that makes me very sad. 

 

I miss waitressing.  That was my second job. The relationships you build with regular customers and remembering exactly what they want to drink and what they are going to order. Knowing personal things about them such as their kids, their hobbies, and their pets. I just love it. But one day I will be able to get that back. I know it is possible. 

 

I heard more positivity once again, especially since my “holiday” and the end of Flagyl was not nearly as bad with the herxing. “Hopefully you will start seeing more good days for longer periods of time. You will see more blue skies. At the end of this protocol I believe you will be on the home stretch of your IV’s”. YES. YES YES YES. This sounds completely promising that even though he is going to beat the shit out of me with the next round or two, the finish line is near. 

 

In a couple months I am reaching the end of having this line in my chest. I have had it since the end of July, and my PICC for 5 months. Nearly 9 months of IVs so far. No bueno. Ready for normal showers again. No splashing water to clean myself, alcohol swabs, and dixie cup baths. No washing my hair under the spicket of the tub. No flushing my line and sitting next to a pole for hours on end. 

 

He gives me so much promise that I really will be “me” again. And I really do think he is right. I went to the bank, the pharmacy, and the grocery to get a drink. I got around in the airport without a wheelchair. Amazing progress. I KNOW he is right. 

 

After the appointment, we were really early to the airport but unfortunately since it was the World Series in Boston (Boston Strong! Woohoo!), and President Obama was there, we could not get an earlier flight. So we waited. On another note we saw Paul Ryan at the airport. He is really tall. Haha. Not going to lie, I was more excited when saw Flava Flav on a vacation. Not too excited about any politicians these days. 🙂 

 

Sitting there, I felt like shit. Loopy. Pain. We finally boarded the plane and were stuck up in the sky because Obama was leaving. Boo. So 40 minutes later we finally landed. We got off the plane and walked outside and waited for our shuttle. While walking to where the shuttle was, I noticed I was “stomping” around. I could not feel my feet at all. My calves, thighs, knees, everything was fine but my feet were completely lame. With the strength I have left of the other parts of my legs I was able to make it. Phew. I haven’t had the numbness to that extent in a long time. I didn’t miss it.

 

The ride home was great. No traffic and we made good time. Pajamas and couch. I wished I could fall asleep but I just couldn’t as I was thinking too much. This treatment was going to suck and I wasn’t looking forward to it one bit. But he promised me. Home stretch is coming. 🙂

 

 

The antibiotic protocol this round:

 

Week 1 – IV Cipro morning, IV Zithro night, Mepron, Septra DS, Artemisinin Mondays, Wednesdays, and Fridays

Week 2 – Same and add Flagyl Thursday and Friday

Week 3 – Coartem Monday- Wednesday

Week 4 – Same as Week 1

Week 5 – Same as Week 2

Week 6 – Same as Week 3

Week 7 – OFF – Back to DC

 

Also on week one and week 4, Monday through Monday (8 days), adding Lactoferrin and Xylitol to break up the biofilm. 

 

My pretty picture of Dr J’s treacherous handwriting and now it is looking like a coloring book. 😀

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Yup. So it’s a lot this time around. Not looking forward to it whatsoever but I have made it this far! Butterflies, rainbows, and unicorns 🙂

 

14 thoughts on “November Part 1 – DC Appointment and 4th Antibiotic Protocol

  1. Kim stay strong hun, you are a beautiful young woman and can get through this!! Love you kimmy keeping you in my prayers!!

  2. Kim, make a special note of this blog so you can easily find it. It sounds like a very tough period of drugs coming up, but there is SO MANY POSITIVE comments from the doctor, you may want to reread what you wrote. Yeah Kimmie!!

    • Yeah there was a lot of positivity and I will definately look back at this and see how far I’ve come so far and keep the entry to remember it. I’m scared since I have the feeling this is going to be brutal but I just know I am going to feel even better after this round!

  3. I was just diagnosed, after 5 years of misdiagnosis and probably 5 more of illness, and will be moving home to my parents in Northern VA for treatment in a few weeks. Reading your blog has helped me accept it and this post especially gives me hope. Is there any way I can get your doc’s info? I’ll be living 17 miles from DC and want to see a doctor that knows what he’s doing. Thanks for sharing so much, I will be blogging my way through this fight too. 🙂

    • Yes I have started to see some progress! I have the feeling the next few months are going to really suck but who knows, maybe I will be dancin’ after this all, and not the couch dance! 😉

  4. I’ve been on IV, off and on, but they haven’t ever had me on two different IV meds at once (always an IV with a different oral or two). Have you noticed a big difference doing that?

    • I feel like it is making a difference. I like the combo/pulse therapy and seems to be working for me, even though I am getting beat up, it seems to be worth it.

      Sounds like you are doing a combination therapy which is good. Fighting the Lyme and co-infections at the same time is the way to go, in my personal opinon.

      I think one of the reasons I have seen improvement is that I was never treated for Babesia before seeing Dr J.

      • Very early on, my doc only had me on one antibiotic, but since then I’ve been almost always on some kind of combo therapy. Nothing came up in my co-infections panels, but I’ve been on every class of antibiotics, so I think Babesia would be the only one that I hadn’t sort of accidentally treated for.

        At this point, my problem seems to be that I can’t stay off of the antibiotics. I was treatment and symptom free for a year, then relapsed. I went off of meds again for three months, relapsed. I’d actually been looking at Dr. J’s group, but them not taking insurance is a pretty big stumbling block at the moment (my guy does). Visits get expensive.

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