April Part 18 – Hello Again, Dr J!

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As soon as we got to the hotel in Boston, we were STARVING, so we headed downstairs to the Margarita’s to grab a bite to eat. I had an Ahi tuna salad, and my altered margarita that I had been thinking about all day. It hit me like a ton of bricks, not going to lie. I don’t have the tolerance I use to. But hey, it made me sleep like a baby. 

 

I slept so soundly I completely forgot to take out my contacts before I went to bed. I woke up with painful, red, and goopy eyes. I took my contacts out, and put a hot washcloth on them. Sure as shit, it was the only time that I have ever traveled without my glasses. Blind as a bat, I got ready without any contacts in to try to give my eyes a break. God damnit. What a wonderful way to start what I knew was going to be a long day. 

 

We went downstairs to grab a bite to eat, and so I could take all of my pills, then took the shuttle to the airport. On the way to the airport, the dizziness took over and all I wanted to do was go back to bed. I made it through the airport lines without a problem (yay!), and was happy we got to sit around for a bit before boarding the plane. I started ticking pretty bad, *AHH* AHHH* *Thriller dance*, so I was worried they were going to take me off the plane, thinking I was some sort of crazy lady. Well, maybe I am, but this is my Tourrette’s like symptom, not the craziness. Fortunately, as soon as we sat down and buckled our seat belts, I fell right back to sleep until we landed. 

 

Dave wanted to do a bit of exploring, but after one look at me, he decided there was no way I was going to make it anywhere. We took a taxi and grabbed some lunch, and headed to Dr J’s about an hour early, just to stay out of the rain. 

 

While waiting, I got to meet another Lyme patient that I have been talking to for quite some time, so that was pretty nice! It is always good to meet someone in person. There was another fellow patient I know that had an appointment a little later than me, but I missed her, although I think she saw me. I will get to that later. LOL

 

My appointment went okay. I lost .2 pounds, so that is something right? Haha. While going over the paperwork I had filled out with the nurse, she got me excited, saying that once I was done my appointment and if all went well with Dr J, they would call the hospital and have my line taken out. Oh my god YAY! That obviously didn’t happen. But I already knew that. Hearing that really did make me excited, but I wish she didn’t say something like that to me, without knowing any of my clinical history. Blah.

 

I had a really hard time with my appointment. I was really not feeling good at that point, and was completely spacing out, not hearing a word he was saying, so he often had to repeat himself. I am interested to see what he writes in his notes, as I wouldn’t be surprised if I had an absence seizure, as I got completely exhausted instantly after coming out of one of my trances. I sure am glad Dave was there to tell me everything. 

 

As I knew, he wanted to up my vitamin D to try to bring up my very low levels. I had already gotten on that as I already realized I wasn’t taking enough when I changed over to pills instead of drops. He wants to work on my testosterone levels, by adding a small dose of DHEA. I told him as long as I didn’t grow a mustache I was okay with that. 😉 

 

With a lot of my issues, lately the instantly passing out, are seizures coming from my brain stem. He didn’t end up changing any of my seizure medications, as I am already taking a lot, but he thinks part of my problem is that I am detoxing too hard, but it isn’t actually coming out of my body… if that makes any sense. I think he used the term overmethylization? Some of my supplements were adjusted to try to calm things down, as he thinks that may be a big part of why I am doing so cruddy off of antibiotics, and why I am having so many seizures. 

 

Dave helped me out with talking about the month as I was getting pretty useless, and we told Dr J about the positives of the month. A trip to the grocery store, and physical therapy being very beneficial. At least there was a very big positive to report back to him!

 

The decision: Dr J thinks my protocols might be too aggressive for me, as he said it was one of the most aggressive ones he gives. So things got dropped back. A lot. I will be taking the same antibiotics I have been on, but a few days have been dropped off and I no longer have my “bomb” day. He said part of it might be because we broke up a lot of the biofilm in the past few months, so I am hitting things very very hard. He also chose to give me another week to regroup.

 

I got another blood work sheet with a few extra tests. I am getting retested for some thyroid tests, vitamin D, and testosterone. I will be getting tested for DHEA, and tested for ammonia. I had to look that one up and I guess sometimes your liver can hold too much of it, and symptoms can be confusion and hand tremors. 

 

I was told that it was my choice to get my line out, as they were going to make a tentative appointment for when I go back. He seemed like he would be okay with it, but him and the nurse also suggested using it for ringers, and also that most switch to an oral regimen before getting their line out. This was a rock and a hard place for me. I will get to that another day… 

 

Paying and making my next appointment, I was feeling an episode coming on. I was leaning on the counter, and knew I needed an Ativan ASAP or I would drop to the floor. I couldn’t find them in my purse, and began to freak out. I was getting really hot, so I ripped off my jacket and was getting even more flustered. I would have probably seen the other Lyme patient that I know, but I was in a tunnel vision panic LOL. Someday. 

 

 I was so miserable at the airport. I had to keep leaning on the walls in line, or on Dave so I wouldn’t fall over. Dave and I were both stuck at the airport, as many of the flights were delayed. I think it was probably because of all the terrible storms going on in the midwest. I was not a happy camper. 

 

Literally nearly four hours later, we got on our plane to go home. I was so mad I could not fall asleep for the life of me, so TV time on the plane it was. It really sucked getting off the plane then realizing we still had to wait for our shuttle, then Dave had to drive the two hours to get back to our house in New Hampshire. I was bummed that it was too late to pick up our dog and wait the following day. 

 

Once we brought our luggage of antibiotics, supplies, and clothes, we went right to bed. I was NOT looking forward to work the next day.

 

Of course, here is the classic Kimmiecakes thumbs up at Dr J’s. 🙂 P.S. I know my pants have holes in them, but I love them so don’t tell me I need to throw them away. Ahem, Dave.. my parents… 

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4 thoughts on “April Part 18 – Hello Again, Dr J!

  1. Keep on kicking it, Kim! You are an inspiration to me as I’m just about to get my port in and officially start treatment (undiagnosed Lyme for over 20 years probably means a long road). Anyone who says anything about your stylin’ ripped jeans just hasn’t clicked in on comfort is EVERYTHING. Plus, it is almost summer! (I’m 42 and I totally dig them!)

    • lol thanks 🙂 Think positive. Everyone’s symptoms are different and treatment is different for everyone. I have had Lyme for over 20 years too. I wish you luck getting your port in and starting treatment!

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