Warning..there is lots of information in this post and it's very long...
Last Thursday we went to Children's Hospital for my appointment with the pain management team. It's actually a team of pediatric anesthesiologists. I've been seeing them for a little over a year and they have helped a lot! Unlike most doctors in Oklahoma, they believe that Lyme is a big problem here, and they have taken care of several kids with Lyme. They understand how hard it is to find doctors who support Lyme.
Last year, they put me on Amitriptyline (Elavil) to help with pain and most of all, sleep. It is the only medicine that has helped me sleep, and believe me, we have tried everything. There is a little problem though with this medicine. It can cause tachycardia (super fast heart rate) and heart arrhythmia. I had to be on the highest dose that they can give because nothing knocks me out. Because I was on such a high dose, I was having the tachycardia and arrhythmias. Earlier this year I landed in the hospital because of that. We stopped the medicine for a while, but then I started not sleeping again. So we decided to start me back on the medicine, but at a lower dose. Right now I'm on the lowest dose and it's working pretty well! I don't think we need to go back up on it.
On Thursday at my appointment, we discussed the risks of the medicine vs no sleep. They also told us about a medicine like Amitriptyline, but for some people it doesn't have as bad of side effects as Amitriptyline. I forgot what it's called. They didn't know if it would work for me though. We talked about switching to that, but for right now we decided to just stay with Amitriptyline since we know it works. We will just have to monitor my heart and make sure everything is okay.
Friday, my mom had a phone conference with my Lyme doctor in Nevada. We've talked to him several times in the past couple of weeks.
The main problem right now is brain problems. I wish I could completely explain what is going on, but it is so hard to describe. I'm having headaches almost daily. There are memory problems that I'm having. When I read things, I really can't remember anything. This summer I read some books but it was so frustrating because I would have to re-read every chapter several times before I could kind of remember what happened.
I haven't mentioned a lot about the brain problems because it's one of the most frustrating things. It can change you into a completely different person. I know of a person who was my age that had Lyme and one day woke up and she didn't even know who her family was. She would try to run away from home because she thought they had kidnapped her. It's so sad to hear about things like that. I will have conversations, and then immediately have the same conversation because I don't know that I just talked about that. Simple tasks now become so overwhelming. Tasks like looking for something that someone asked me to find. It just overwhelms my brain and I forget everything they said. I'll go downstairs to get something I need, and find myself just standing there for ten minutes not knowing what I'm doing.
I hope this doesn't sound like I'm bragging, but before I got sick, I didn't have to try in school. I just made good grades and planned on graduating with straight A's. Now, I can't even do 20 minutes of work at a time without getting overwhelmed. I just sit there are stare at my work trying to figure out what to do. There's so many things that Lyme does to the brain...
So we talked with my doctor about that and what to do about it. He said part of the brain problem is from toxins. As you kill the Lyme bacteria and co-infections, they give off horrible toxins. Lyme patients bodies are so unbelievably toxic. I'm starting lots of detoxing to try and cut back on the toxins. I'm also starting back up on all of my shots and medicines. I had stopped when the gallbladder problems started.
My doctor was so glad to know that I had surgery to take out my gallbladder. He suspects that I've been having gallbladder problems for several months. After we went to the clinic in Nevada in May, I started having stomach problems. He said that even though the surgery is laparoscopic and supposedly "not a big deal", it's a big deal to have gallbladder problems. He's so glad that we got that taken care of because you do not want to mess around with that.
A few times this weekend, I have eaten spicy and fatty foods and then have gotten sick with nausea and abdominal pain. We told my doctor this and he told me to stay away from spicy and fatty foods for a while. He explained what the gallbladder does and so it makes since as to why my body needs time to adjust. I'm glad to know why I've been getting sick!
Last week I was feeling pretty good! I left the house almost everyday last week! Thursday night my parents and I went to a thing for Oklahoma Christian University. It was 'A night with the president'. There was a reception at the president of Oklahoma Christian's house for juniors and seniors looking at OC. It was great! We were the last ones to leave because we were talking to the president and first lady. It's funny because at church or any event my family is always the last to leave. It's like a law or something. It never fails.
On Friday I got to go to senior lunch and then to a movie that night!
On Saturday I did IV fluids at home. I started not feeling well Saturday afternoon and am still not feeling well. I've been achy, had a little fever, and just feel terrible. I went to church Sunday morning which wasn't a smart idea. Yesterday I took a nap and felt a little better. Hopefully I'll feel better soon!