May 2013 Part 1 – My First Trip to DC

The day finally came that Dave and I headed to our first appointment at the specialty clinic. The intake was pretty intense, as they had sent a lot of paperwork for me to mail back to them, and Dr. S. had mailed a bunch of his notes, tests, etc. as well.  


Dave previously called to make flight reservations, which we would have normally done online, but we had a bunch of credit to use up as we canceled our January vacation to Hawaii that was already paid for. We flew out on a Sunday afternoon, and he made sure that there was handicap service available to me as it is difficult for me to walk long distances. Let me tell ya, you sure do get through security way faster being in a wheelchair. Our flight was short, and there was a chair waiting for me as soon as I got off the plane and we got a taxi to our hotel. 


This was our first time going to DC, and although I wasn’t well enough to really do a ton of exploring, I hope one of my future trips I can get around a little easier to look around. It really is a beautiful city. We got to our hotel and relaxed for a bit, then headed a block down the street to grab a quick bite to eat and try to get a general idea of where the clinic was as 9 o clock in the morning is pretty early for a no longer early riser. 


My first appointment was very long, about 3 hours, as if I was starting from square one. We both really liked the woman (Dr K) that we spoke with, although I am not sure she will be our actual Dr. throughout the process .  I felt a little bit depressed as I got my weigh-in as I had gained a substantial amount of weight ( almost 20 lbs) since I had come off of the IV’s. Still a healthy weight and on the lower end of BMI for my height/weight ratio, but no one likes to hear that they have gained. After that I felt like Shamu for the rest of the day. Who knows, maybe my flip flops were 10 lbs a piece. lol. A girl can wish! I am assuming my weight gain is because of my couch potato state and the fact I am no longer puking multiple times a day. 


 She was very kind and was patient with all of our questions.  I felt comfortable and was happy to hear they had a few patients that went there that also suffered from the same type of tics I have. Once we discussed my lengthy medical history, she had me get in a johnny for a physical exam. This time at least I didn’t give anyone a show. 😉 


She did the usual type of exam and did a variety of reflex tests and, move my fingers to my nose, and felt my stomach. She had told me because of the soreness there was definately a concern for babesia, a co-infection that I have not yet been treated for that Dr S was also suspicious of me having as well due to the hot flashes, night sweats and shortness of breath.


She pressed a tuning bar onto my foot and told me to say when I could not feel it anymore. After about 10 seconds I could no longer feel the vibrations, and she showed me on my wrist that it was still going pretty good. She said it was a common neuro issue among lyme patients. It wasn’t a huge surprise to me though since all along I have had numbing sensations in my feet and legs. 


She agreed that not being on antibiotics was the best thing for me right now, as my bloodwork had been all over the place and she said that in order for a treatment to work, your immune system needs to be in a good place for the antibiotics to do their thing and be productive. When you aren’t healthy and your immune system isn’t working properly,  you aren’t going to fight anything, you are more counterproductive if anything. That makes sense to me. 


She gave me several neurotropics to start off on, to try to calm the tics down a bit as well as a list of a couple more supplements she wanted to add to the mix.  I was kind of hesitant to this but I knew it was going to end up happening, but I also know that this is a process and I really wanted to do as they said. 


One of my biggest hobbies is target shooting, and a list of “crazy” pills put me off, especially being a permitted hand gun owner. I was worried that it would affect my future gun permits if they start looking at medications even though they are to calm down the tics among my other neuro symptoms. I haven’t done any shooting these days, anyways, as I would probably wind up having one of my tics and shooting myself or Dave somehow. All in good time I am hoping to get back out there. Probably not the best of ideas for the time being. 


 I was put back on gabapentin, which I had previously taken for months, but this time a higher dose, adivan, lamactil, and klonopin for sleep.  A nurse came in and showed me how to do my own B12 shots. Dr. S had been giving me oral B12 for several months, but this was just a stronger version. Kind of funny, it turns your pee hot pink the first time you have to go after taking the shot. 



I was told I was definately a good candidate for IV treatment and although I wasn’t given a prognosis yet, as they were waiting for many test results to decide the course of treatment, I heard exactly what I needed to hear out of their mouth…that my past eight months of treatment weren’t a waste of time. Dr. K told me that it wasn’t a waste what I had done, it was just that a lot of things weren’t necessarily addressed yet and there were a lot of treatments that they could do that I haven’t tried before. My worst fear was that everything I have done for the past eight months, everything that I had gone through,  would be back to square one and be a complete wash. That was a huge relief. 



She scheduled me for a phone appointment in six weeks and gave me a variety of tests and bloodwork to get done before my next appointment, a phone conference in 6 weeks. I would have thought it would have been earlier, but they said it was probably going to take awhile to get all my tests done. I had an order for a chest x-ray, throat ultrasound, abdominal CT, Spect scan, gynecologist and cardiologist appointment. So it was lots and lots to get done! 



The trip home was a long one for sure. For some reason, the airport at DC missed the memo for the wheelchair request upon ordering my plane ticket and did not have a chair available to me. Dave was pretty angry as he knew I wasn’t going to make a stink about it, as it’s not like I can’t walk, I just can’t be on my feet for a long period of time but he knew it was going to be really hard for me and knew what was likely going to happen. I did make it, and once we flew to Boston, I was feeling very confident and wanted to continue to walk and make it to the car. I made it to the end of the airport, almost to the parking lot and then completely collapsed and passed out. Damnit, I ALMOST made it! At least I can say I tried 🙂


My pup was very happy to have us back home! As you can tell I was glad to be home too, I was beat!

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