DC Appointment and Month 2’s Protocol

This time around for my trip, since it was a weekday, Dave and I spent the night in Boston the night before and flew out to DC in the morning. We both didn’t end up going anywhere and just stayed in the hotel, watching episodes of “Face Off” and just relaxed.

Here is the look of disappointment on my face, however, since he wouldn’t go and get me candy from the vending machine, even though it was after 10 at night. LOL

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So, morning came, no candy in my belly (he probably did me a favor) and away we went!

You probably read my previous post, about talking to the man in a wheelchair, as we were waiting for my appointment. It made me so sad but gave me such appreciation even though I am in a situation I wouldn’t wish upon my worst enemy.

They were finally ready for me, and I met with a new infusion nurse, but I had met her previously as she helped get the stitching out of my power line that was not suppose to be there in the first place. The first thing she did was take my weight and drumroll please……..  I lost a pound! Must be all my happy couch dances lately… or the fact Dave gipped me on candy the night before.

She took some notes about how I was feeling, took my blood pressure and explained how I would be doing my new IV, clindamycin. I was to do my previous month’s IV first, then do a clindamycin IV. She hooked me all up to go for a test whirl.

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No serious reactions 🙂 I was sleepy, felt a little high, thirsty, and it left a terrible taste in my mouth. But doable. I am a little worried about how it will play out doing both IV’s, but I will have to see. It is also a bummer that the IV’s will take up between set up, infusion, flushing etc. around 3 1/2 hours a day. No biggie though. I have done morning, afternoon, and night IV’s when I had my PICC line in. All the more time to play Temple Run, grow my MyTown city, check on my Sims, and stalk people on Facebook 😉 Yes, I am lame. But I have to occupy myself somehow.

I was especially nervous this time around, seeing Dr. J again, as I didn’t want him to think I looked like poo or was slow at responding. But this time, my body decided to tic, doing the thriller dance and incorporate a few porky pig stutters. Oy. I can’t wait to read my notes about myself once they come in the mail this time.

I told him about what was going on this month and his main concern was to be blatantly honest…ummm… get me a little less crazy. So, we will be adding a low dose of Abilify to see if that makes a difference.

I showed him my leopard spots and he said he was sure I had vitiligo. So of course, time for a Google search! “It is a skin disease in which the pigment cells of the skin, melanocytes, are destroyed. The exact cause is unknown, although experts believe that it is an autoimmune condition in which the body’s immune system mistakenly attacks and destroys certain cell walls within the body.” Thanks Medicinenet!

Okie Dokie. Add it to my laundry list of shit.

We went on to talk about what this month was going to look like. I have the rest of the week off but will need to do a few lactated ringers. He now wants me to do bloodwork every week instead of every other week. A few of my bloodwork tests were slightly low such as RBC, HCT, and sodium. My glucose was high. Nothing alarming though. But adding more to the mix and my prior history of liver and pancreas issues, better to be safe than sorry!

My new antibiotic schedule goes as follows:

Week 1 – IV meropenum, IV clindamycin, and Septra DS morning and night, Monday Wednesday, and Friday

Week 2 – Same as above, add mepron twice a day, Monday, Wednesday, and Friday

Week 3 – Same as above, add artiminisin twice a day, Monday, Wednesday, and Friday, Tindamax twice a day on Thursday and Friday

Week 4 – off all, return to DC

My other supplements also changed a bit. No longer taking CoQ10 as it has an adverse affect to one of the new medications. I am not sure which. Adding vitamin C as it is a natural antihistamine and he thinks it will help with the itchy feeling I have. Also adding nattokinase as another blood thinner.

Altogether, my IV’s and my oral antibiotics, aspirin regimen, lamictal, gabapentin, ativan, abilify, alpha lipoid acid, deplin or cheaper folate depending on the day, fish oil, vitamin c, mineral 650, b-12 shots, NAC,  nattokinase, klonopin, diazepam, vitamin D, glutamine, magnesium, l-carnitine, tri-methyl glycine, saccharomyces, probiotics and an array of anti nausea meds I hope I won’t be needing.

So… lot’s to do this month, and already warned it was going to be more in the following months. I feel like it’s a blast from the past as it is an abundance of meds and supplements once again. It is just unbelievable that this disease does not get the attention it deserves.

This month could be the start of more tough ones, but I am so ready for these buggers to go away. Time to get crackin’!

12 thoughts on “DC Appointment and Month 2’s Protocol

  1. I love reading your posts….it is like looking into the future. I see Dr J next week and it sounds like many of the same antibiotics, meds, supplements are used on me too. I am a week or two behind you in treatment…let’s hope it all goes well for us both!!! Cheers!

  2. Hi Kimmie! Bless your little Heart…you are just the sweetest! I enjoy your posts so much…hoping to read how much you are improving on treatment! I was just diagnosed in July, and have been to see three Doctors so far. Your treatment plan sounds complex, but I’m sure it will be very effective…sounds as if your Doctors have all the bases covered! The Docs I’ve seen really only talk about Doxycycline… and only one Dr. recommended a combination of Minocycline and Azithromycin. It’s not that I’m dying to go on a ton of meds, but I feel as if my “treatment plan” is so cookie-cutter and simplistic. I also read that you wrote one should not stay on one type of antibiotic more than 45 days. I don’t see an end in sight for me, with regard to the same antibiotic, or the combination of the two. Does your Doctor do phone consultations too?? I’m not sure I could afford to go every four weeks in the long term!! (I’m in Upstate NY)
    There was one thing I didn’t see on your supplement list, and wondered if you had ever supplemented with L-Lysine?? Supposed to be very beneficial!
    Best of luck to you, Kimmie….I am looking forward to hearing good news about this next phase in your treatment!

    • I know of two very good NY LLMDs.

      I haven’t taken l-lysine… I don’t think. I can’t keep up with everything I’ve taken lol. I am going to email you the names of the 2 Drs.

  3. Thank you, Kim! I received your email! I have heard of Dr. Horowitz…I had pre-ordered a book that he authored, through Amazon, due to be released in November. He’s about six hours away! I will definately check into the availability of both Dr.’s! I do have an appt. w/Dr. Daniel Cameron in Mt. Kisco, NY on Sept. 5th. Thanks for getting back to me!

  4. Kim…I’m sorry, I just realized maybe I should not mention Doctors by name…these are two NY Dr.’s that I had heard of. The Infectious Disease Specialist I saw earlier this month told me he would not treat me for Lyme Disease told me to “go down the road” (to Poukeepsie…six hours away) and see Dr. H.

    • Yea infectious disease specialists abide by CDC guidelines. I was told I either belonged at a hospital if I was that sick or occasionally people fake symptoms after their 2-4 weeks of treatment for attention LOL

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