July Part 4 – Off to the LLMD I Go!


This week I kind of promised myself that I would not be anxiety ridden trying to get everything in order for my LLMD appointment, even though we were gone for one day, I feel the need to compulsively clean, and check what I packed 80 thousand times. Well.. that is a bit of an exaggeration, but you get the idea.

I was beaming with excitement earlier this week, as I checked my hospital’s patient portal, and I finally got my drug test results back. Dr S really did test me for everything under the sun, and apparently, I am NOT a drug addict! My cardiologist was not at the hospital that day, and I want to hand deliver those notes to him, so they don’t go “missing”, but my other doctor that called and told me they “really wanted to see my drug test results when they came in” was there. I withheld my true feelings of letting them have it, and instead wrote in big capital letters “ALL NEGATIVE” and underlined it. Dinks. You all lose. I win. So there. 😛

I had planned to get ahead at work, but I needed people at the other end, such as the mail lady and an email showing electronic payment so I could credit our invoices, and of course they were running behind. I did a bit of dub work, but nothing like I would have liked. I knew when I got home from my trip and went into work the following day, my desk would be sky high with papers, and that is what exactly happened.

Good thing that this morning I was in “Kimmiecakes kicks ass” mode, and got everything that I needed done. Without crying, throwing papers, or having a tantrum I should add. That is pretty good for me, especially since this past week nearly every day ended up with tears, tantrums, and feeling completely overwhelmed having so much brain fog.

The night before we left for our trip, we treated ourselves to dinner at Margarita’s. I ended up having a margarita with my vegetarian/gluten free dinner. Even though I thought I was well behaved and opted for pineapple juice instead of ridiculously sugary sour mix, I could feel the back of my head begin to fill with toxins.

I keep thinking that this feeling will change, but maybe it is just something that I will have to deal with from now on. That’s okay though. It is probably better off. I miss the social aspect, but it really isn’t worth the reaction I get. Plus it is a big money saver.

Getting ready for my trip, I had intentions to look the very best I could. In my mind, I figured if I looked healthy and well groomed (which I have been really lacking in that department), then maybe the doc would think that things were all and well.

Maybe I could fool them a little bit. I made sure my toenails were painted, and made sure to wash my hair. Unfortunately, the hotel didn’t have conditioner. What hotel doesn’t have conditioner? Cheap asses… so intend, I had a greasy, frizzy, yet split end and dry looking rats nest that left me pretty disappointed. Damnit.

Dave and I had to be up at the butt crack of dawn yesterday morning for our flight. 3 a.m. What is 3 a.m.? Oh dear lord. FML. I was so surprised that I somehow made it alive navigating through the airport, and even standing in line. I was surprised, my heart monitor didn’t even set the alarm off.

Dave relentlessly teased me, since I presented my medical card to the security and let them know I might set the alarm off, and they offered a pat down instead. I said that would be okay, and Dave piped in and said, “No, she will be fine going through the detector”. Once I thought about it, why the hell would I want a pat down? Dave told me I just wanted some creepy security man to give me a rub down.

Yeah… I wasn’t quite thinking on that one… but to be fair it was 4:30 in the morning at that time. I have trouble functioning and answering simple questions at my best times of day. Asking me at 4:30 in the morning I really wouldn’t process anything in my Lyme riddled brain. Haha.

Here we are, waiting to board!!!

We had just enough time to grab a bagel (gasp.. I have not eaten gluten in over a month now), and headed to my appointment. I didn’t have my regular LLMD, since he isn’t taking appointments at the moment due to a surgery, so I had his PA as my doctor for the day.

We discussed some of the issues I have been having, and one that I was adamant about was my wish to no longer take Klonopin. She was on board and told me I could taper off and see how I feel, and that I know my own body and what will work for me. That was much easier than I thought.

I really hope that I am right about this particular drug contributing to some of my depression, paranoia, anxiety, and hallucination issues, as stopping Cipro has cleared up most of it, but these issues are still very much still there.

She did some feeling around, and I was very pleased that I no longer have an enlarged spleen or liver (YAY!), and I could feel her touching my stomach, doing some sort of test. She never explained what she was doing, and I am not sure what my reaction was to be honest. My shirt was blocking what she was doing. She did another test, touching my hands and fingertips to see what my reaction was. She continued talking with me about my symptoms the past few months and how treatment has been going, I think so that I wasn’t paying attention to my hands. I couldn’t really feel anything… but I knew she was touching them.

At that moment, my usual LLMD happened to swing by the office, and she told me that she wanted to talk to him about my game plan. It was kind of perfect timing, so I could still get his take on what has been going on with me, and what he feels is right for me in the next few months.

After awhile, she came back into the exam room, and there was some bad news.. I am going to be on one more round of my disgustingly aggressive Babesia focused protocol. Bummer. But, Dr J felt that it was really needed.

She told me after this round, we would start a new protocol. She apologized to me, telling me that although I pretty much begged for a much lighter protocol, I still really need a heavier treatment. She told me although it was a tiny bit lighter load, it was still going to be a heavy load. I must have failed miserably at whatever stomach and finger/hand test she did, as well as knowing I am still not where I should be at this point.

I never reveal protocols, for the protection of my doctor, but all I can say is my first week is going to be pretty brutal, then my second week will be lighter. A nice thing about this time around, I was given the option of having a two or three week break before I start another round of treatment. I will know. With what I have currently been doing, I can feel a difference in my body, and as much as treatment sucks, I know I am ready to start again.

Although I didn’t get a complete butterfly, rainbow, and unicorn appointment (maybe it was my hair? Only kidding), I am happy with my next course of treatment. As requested, I will still have something for Babesia, as I have this huge fear I will be set back even further behind, and most of all, it is something different. Change is good. I do have to keep an eye on my blood work however, as I had a brain fart, and I think one of the particular drugs caused a little bit of kidney issues in the past. At least I get tested very regularly, and I even have my own card, so if I feel really “off”, I go to the hospital and have them run some blood work for me. Call me a frequent flyer I guess. 😉

One of the best things about my appointment was that because my organs were no longer enlarged, I can do a phone conference! Horrayyyy!!!! This is a great thing, as it costs a fortune to travel, and the cost of staying overnight at a hotel.

As soon as I was done my appointment, Dave and I headed straight to the airport to fly back home. What a long day! Needless to say, I was able to fall asleep shortly after I got home. I start my wretched protocol tomorrow. Knowing this will be my very last time to do it makes me pretty happy, and I am not even scared or nervous. I will finish this one out strong, and a new chapter will soon begin. One that I hope I will start to see big changes. Positive thinking, I think I will.

Did you think I would forget my usual thumbs up appointment photo? Nope, I didn’t!

Happy weekend!

4 thoughts on “July Part 4 – Off to the LLMD I Go!

  1. I can so relate to the travel chaos of going to the LLMD appointments. We drive 5 hours to ours and stay overnight two nights. Drive down in the evening. The next morning I do the LLMD in the morning and go for some biofeedback treatment in the afternoon. Then home the next day. I get very worked up before the trip also, making sure I have remembered to pack everything, making sure I have my notes and my journal. then I have to analyze the journal and my symptoms. Such fun! Some advice if you are weaning off the Klonapin, do it VERY slowly- cut little slivers off the pills to reduce the amount ever so slightly each time you take a step down. good luck with the new treatment. Hang in there! It is so good you have Dave for support.

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