More appointments, more treatmentment plans

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!

Medicine and more medicine

I am on day 6 of the 190 day treatment plan I am starting. That's right, 6 and a half months of this. This is not the only only treatment I am doing though. That would be way too easy if I only did one kind of treatment...I wish I could do that!

This treatment is all natural things from plants in South America I think. Here's a schedule of what I'm doing right now.

30 Minutes before breakfast:

Banderol-5 drops

Burbur-10 drops

Magnesium-2 caps

Serrapeptase-1 cap

30 Minutes before lunch:

Parsley-10 drops

Pinella-10 drops

Samento-5 drops

Sparga-10 drops

Trace Minerals-30 drops

30 Minutes before dinner:

Banderol-6 drops

Burbur-10 drops

Mangesium-2 caps

Serrapeptase-1 cap

Bedtime:

Parsley-10 drops

Pinella-10 drops

Samento-6 drops

Sparga-10 drops

Banderol and Samento are the 2 that kill the Lyme bacteria. I started out on 1 drop a day because they cause herx reactions. Everyday I go up on 2 drops on both of those medicines.

So the drops increase as time goes on. Also, we start adding more medicines.

When I start having herx reactions, I can take 10 drops of the Burbur every 10 minutes. It helps some!

Yesterday I had a rough morning. I woke up and took the medicines. After I took a shower, I started coughing a lot. I couldn't stop and it was causing me to throw up. Since I didn't have any food in my stomach yet, I was dry heaving. It was horrible. I got to get out of the house all yesterday which was so great!!

I have to carry all these medicines around with me since I take them all through the day. Yesterday and today I have had a major headache and my legs hurt a lot. It's just reactions from the medicines.

Along with this treatment, I am starting shots and more pills. That is where the 40 pills a day comes from. I'm start Collagen and that will be 18 pills a day. So I've got a lot to keep up with!

"Do not take this medicine if you are allergic to it."

That is the warning on one of my medicines. I'm glad they cleared that up for me...Do they really need to say that? I guess so...

Also, if you ever read the side effects for your medicine, you might get really confused . For example, the beta blocker I was on, said it might cause drowsiness and dizziness. I was put on this medicine to try to help the dizziness along with many other things. My sleep medicine says may cause drowsiness. Umm isn't that the reason I'm taking it? There are so many funny things like this. Like anti-depressants cause depression. What? Some things I will never understand.

I'm still sick with whatever I have and I'm up a lot during the night coughing. At least I can talk now!

I'm starting the new treatment plans soon. We're working on getting a schedule made because there is so much to take. I have started 3 medicines already. They are liquids and I put 2 of them in 4 ounces water in a glass cup. I put 10 drops of each in the water and then let it sit for 1 minute. Those don't taste too bad. The other liquid, I just swallow. It is so gross. I'm pretty good at taking medicines no matter their taste but this one is a little over the line. I put 30 drops of it in my mouth for 30 seconds then swallow. It has a nasty texture of something that should be illegal to swallow. It tastes like extreme salt water mixed with some other nasty stuff. I am supposed to do all of that 4 times a day...

Tonight I am going to a unique Bible study about spiritual disciplines. I will tell you how it goes! I'm really excited.

Side effects just stink

Side effects really stink. I'm tired of all these side effects. I'm tired of having to take medicine for the side effects caused by another medicine. This beta blocker medicine is making me CRAZY. I am not myself at all. I'm not in a good mood about anything and I can't control how I act. It's like I'm a completely different person. I am spastic sometimes and then suddenly I will just crash. I feel so weird... My mom called my cardiologist so we are waiting for him to call us back. I'm just not tolerating this medicine at all. The doctor should call us by tomorrow.

We got the okay from my Lyme doctor to resume treatments again. We really need to kill the Lyme so that it doesn't damage my heart or anything more than it has. So I am starting the new medicine that helps my joints. Guess how many pills I have to take a day? Okay I'll just tell you... Eighteen pills a day. That's right, eighteen a day. I'm starting back on all my other medicines too. That means that I'm going back to the 20 pills of supplements too. I'm also starting back on the butt shot everyday. There's a new medicine to kill the Lyme that comes in a liquid. I start with 1 drop a day because it is so strong. We are praying that I don't have bad herx reactions from the toxins from the bacteria. There are a few other liquids I will take.

I'm also still taking my heart medicine and sleep medicine and sometimes pain medicine.

So in one day I will take over 40 pills, a couple shots, liquid medicines, and an iv.

Good thing I am a pro at swallowing pills.

That's a quick update about everything. We are praying that we will hear from my cardiologist tomorrow and can come up with a new plan.

New Treatment plans..

On Tuesday I went to the pain management team at Children's hospital. They were very nice and open to discuss anything. All they did was put me on Elevil at bedtime. It's suppose to help with sleep and pain, but it won't start working for 3-4 weeks. I had an EKG there because the medicine I'm on can mess up your heart.

Wednesday I went to Seminole. The doctor was really great! She knows about all the controversies with Lyme. She said she has treated so many people with Lyme. What?! Lyme in Oklahoma..it's true. I'm glad at least one doctor in the state actually knows that it is becoming a big problem. We were at the doctor for about 4 hours talking to her. She also did some blood work on my thyroid. I'm having more neurological symptoms so she said that the Lyme is spreading more to my brain. That's not good at all. She wants me to do IV antibiotics everyday for at least 3 months. So I got my first dose yesterday at her clinic. Antibiotics make me so sick. Last time I was on them I was in the Emergency Room several nights in a row..it was bad. Last night I was up all night with a migraine and today I feel horrible. She also put me on more shots and supplements. It's crazy how much I'm on right now. So please pray that the 3 months of antibiotics do more help than harm.. I'm really scared to be on them, but it's our only option right now. I'm so thankful that we found a doctor that is actually on our side of this battle!

I hope you have a great weekend!

"The LORD will fight for you; you need only to be still." Exodus 14:14

“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” Isaiah 46:4