Thoughts from a Lyme Patient Pt. 2

So this is what I’ve been thinking about lately, I know it may be similar to previous posts, but I hope it’s still interesting.

The emotional things you go through with a chronic illness can be even harder then the physical symptoms…

The other day I cried for hours. I felt so horrible about myself. I just wanted everything to stop. I almost wanted to curl up in a ball and die. Sometimes I feel like I don’t have any more energy to keep fighting. Like there’s so many what ifs. I can’t think like that, but it’s so hard. I don’t know if I’ll ever get better. Why fight if I’m going to be sick for life or die anyways?

I remember watching a video and a man said he thinks Lyme disease is worse then prison. In prison you have a time of when you will get out. You know, okay I’ll be here for three years or if it will be a lifelong sentence. I honestly think it would be better if someone could say to me, you have however many years to live. I could have some kind of understanding of what’s going to happen to me. Right now I have no idea.

The other day I watched RENT with my mom. I love the story and lyrics in that musical. It’s about the AIDS epidemic which is very similar to the Lyme epidemic. If you haven’t watched it you should. My mom and I cried the whole movie. It felt good seeing a story similar to ours. Often we see Cancer on TV or in movies. Most of the time Cancer is a different experience, at least from what I’ve seen.

Last week everyone started school again. It’s so hard for me to watch everyone around me live their lives. I’ve talked about it before, but I think it’s the hardest part for me.

I want to watch my old friends having fun and living life, but it can make me feel so sad. I see their photos on social media and it sucks. Sometimes I think maybe it would be better if I didn’t see it, but then I crave to. It’s such a weird thing.

I’ve lost basically all my friends. Only one has stuck with me, Sara. She has been amazing and so supportive. Everyone else moved on with their lives. I know that they didn’t mean to hurt me or anything, but sometimes it still hurts to think about everything I have lost.

Sometimes I feel like I’ve lost myself. I feel un-human, worthless, and pathetic. I know that isn’t true, but when you can’t do anything, its hard to believe you’re important.

I see everyone around me succeeding at various things. People younger then me, driving, taking the SAT’s, and doing things I thought I would have done years ago.

This year I would have been a senior. I feel like I didn’t get any high school experience. I dropped out the middle of tenth grade and even when I was in school, I still hardly ever went.

Now I am going to get my GED. I’m hoping that will help me feel proud of something.

My parents say I should feel proud of what I’ve gone through, but it’s different to me. Yes I should, and I do; but I want to be proud of something happy. I don’t want to be known as the sick girl. I want to be proud of something I did, because I wanted to. Not something that I had to get through.

I want people to smile at me. Not cry and hope I’m not dying.

I realize I’ve also gained a lot of things. I’ve gained experience that a lot of people will probably never have. I’ve gained my best friend, Anais. She’s my massage/physical therapist and I wouldn’t have met her if  I wasn’t in so much pain.

This disease is really hard, but I have to stay strong and hope for better days. I have to focus on the things I am able to do, not the things I can’t. Someday I’ll look back and remember what I’ve gone through. I’ll remember how strong I am.

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Klinik St. George in Germany

I haven’t posted in a couple months, because I have been super super sick. This post is going to be about my experience at a clinic I went to in Germany. I went for a little over three weeks.

Before I went to Germany I was so sick. I was unresponsive, having seizures, couldn’t eat or drink, couldn’t get out of bed, super bad vertigo and neurological problems etc. I was going to the ER 1-2x a week. Now I am able to walk short distances, I’m able to eat and drink, I’m able to speak, I haven’t had a seizure, I can get out of bed at least to get food and go to the bathroom. Sometimes I’m even able to leave the house and hang out with friends. Like today I went to the swimming pool with my friend Anais. I can’t swim, but it was nice getting fresh air. I am definitely better. I still have a long way to go until I’m 100%, but I’m getting better instead of worse. I still have to detox and kill my co-infections. Co-infections are basically other diseases you can get with Lyme. I’m pretty sure that I don’t have Lyme though, because that’s what the doctors in Germany said. I still have most of my symptoms though. I’ve heard that the co-infections are usually what’s making you so ill. Anyways here’s what happened in Germany…

My mom and I went on June 11th 2016. Neither of us had ever been to Europe before. We took a direct flight from Denver to Munich. It was about a 10 hour flight. We then took a shuttle to the clinic which was about an hour away. The clinic is named Klinik St. George and it’s in Bad Aibling Germany.

When we got there one of the doctors met us and showed us our room. It was a nice room, but still looked like a hospital. It had buttons to press, so you could call for a nurse. It also had an IV stand and hospital beds. The kind that your feet can raise or you can lay on an incline. I remember us thinking that the pillows were huge too. We then went down to eat lunch. After lunch I was supposed to do tests, but they didn’t have my schedule yet. We didn’t do anything until the next day.

First day of treatment I did some tests and got IVs. We still had to wait for my schedule, so I didn’t start treatments until the afternoon. I had different treatments depending on the day.

Initial and Final Lab Controls

– Dark field blood analysis (when indicated by our physicians, this may also be substituted by other tests like VCS)


– Infusions with Vitamin C, chelation, selenium, procaine, antibiotic

– Ozone Therapy (intravenous and rectally)

– Singulet Oxygen Therapy

– Laser Therapy (red and green)

– Magnetic Field Treatment

– Detox footbath

– Colon cleansing

– Systemic Whole Body Hyperthermia

– Detoxification Program

– Infusions/detoxification program are established by the physicians according to the individual situation of the patient.

The biggest treatment was Hyperthermia. They heated my body to 108º and the chamber I was in was about 148º. I had this done twice. This was the hardest treatment. I was put to sleep and hooked up to many machines, so they could monitor me. It takes about 7-8 hours. I don’t remember two days after that treatment. All I know is that I got really sick. I was unable to eat so they gave TPN, I couldn’t move, had bad vertigo, horrible nausea, pain, fatigue, and the second hyperthermia I was unresponsive. Both times I had it on Friday, so on Monday I would start the detoxing treatments. The second time I remember more. I actually woke up in the chamber after the treatment was done. A nurse helped me into a wheelchair and brought me to a recovery room. You stay in a recovery room for a night just to make sure you’re okay. I thought I was fine. I felt tired, but not overly sick. I watched Modern Family with my friend Kaitlyn. The next day I felt super sick though. Basically the same as the first one. I didn’t start detoxing until a bit later then I was supposed to, because I couldn’t make it out of bed, but I got a lot of IV’s. Through my whole time at the clinic I was almost always hooked up to some kind of IV. I’m so glad I got a port!

I stayed a third week, because of how sick I was. I got Plasmapheresis and Cell therapy. The Plasmapheresis was pretty intense too. Not as intense as Hyperthermia, but still not too fun. I was totally awake during it. They took out half my blood, maybe a bit more and cleaned it. They separate the blood into bad plasma and cells. Then they gave me new plasma in an IV with the rest of my good blood. I remember feeling faint, but 100x more. I looked at my arm and it was white and purple like a dead person. I wasn’t told what was going to happen before the treatment, so I didn’t know what to expect. Plus the doctors didn’t speak much English, so I couldn’t ask them questions. It’s supposed to take 4 hours, but mine took 7. They had to use my port and the needle was small. The machine beeped the entire 7 hours. Apparently it was still working though. It also kept stopping, so they had to give me a lot of heparin. I passed out a few times. It was super weird, I thought I was going to die at the end.When it was done I felt like the inside of my body was buzzing. I then went back to my room and ate, so that I would feel better. That night I went out to dinner with my mom, crazy! I wish I had done two, because it’s very good for detoxing.

The last week I also had two shots a day for 5 days. These were the Cell therapy shots. They were cells from sheep and pigs specific for different parts of my body. I don’t know much about it, but it’s supposed to help your body create new healthy cells. It lasts for a year.

The best part though, other then getting a bit better, was meeting so many people who understood me. The community was great. We were all going through something so hard. It didn’t matter if you had Cancer or Lyme. We all did very similar treatments. We all felt horrible. It was amazing! I wish I had that community here in Boulder. The doctors and nurses were nice too. My favorite doctor was Urs, he was very sweet and kind. The nurses I liked were Kristof, Mo, and Christine. They treated me like a person, not just another patient. I hope I never have to go back there, but at the same time I miss all the people. It get’s pretty isolating at home. I’ve lost all my friends, but two. I’m so grateful that Sara stayed with me through all of this. I also have Anais who is my massage/physical therapist, she is my best friend. I see her at least twice a week for a couple hours. I’m glad I get some kind of social interaction regularly. I wish I had Lyme friends I saw in person, but it’s actually looking up. I’ve talked to two girls who live in Boulder who have Lyme. Both would like to meet me. Hopefully I can become friends with them. I have Gabbi and some other Lyme friends who live in other states, but I want to be able to physically see people.

I know people wanted to know what my experience at the clinic was like, so I hope this helps. If you have more questions, you can comment and I’ll try to answer them. I didn’t go into too much detail, since I was there for 3 weeks. If I did this would have been a very long post.

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A New Beginning for a Lyme Disease Patient

The last few days has been going well for me. I’m so happy! I’m still sick, but I’m pushing myself to get back into my life as much as possible. I started going to a LGBTQ+ youth group on Wednesday nights. That has been fun. It’s nice to be around people again. Everyone was super nice and supportive. This coming week is Pride where I live. I’m volunteering to help when I can, that should be fun. I am also going to start going to my voice teacher again. She does voice rehabilitation, which I think would be good for me. I have major lung/breathing problems, so I’m hoping she can help.

Today I did a lot. I woke up at 7:00am and didn’t rest all day. I went to my GED orientation and took several pre-tests. This was so they could see where I need help. I tested in math and literature. I didn’t think I would do well on the math tests, but surprisingly I did nicely. I also got advanced on my writing and reading. The tests took a couple of hours. Luckily I finished early and I could leave when I was done. I’m proud of myself, because I have many brain issues due to my Lyme disease, but I still succeeded. Plus I haven’t been in school for a long time.

After I was done my mom and I went to lunch. That was really nice. We ate outside in the sun and talked. It felt like I was really living again. My mom kept saying that she would look at me and couldn’t believe I am able to do what I’ve been doing. After lunch we went to go get a gift for a friend we met in Germany. All of this took up most of the day.

I’m really tired, but I haven’t crashed yet. I’m trying to push myself as much as possible. I’ve been walking more, even though it’s hard. I didn’t use my wheelchair at all today, only my cane! It’s amazing how far I’ve come. I still have most of my symptoms, but they are less severe. I realized that once you’ve gone through so much, you get pretty tough. I think if I was like this a year ago, I would be in bed. Now that I’ve gone through much worse I have became stronger.

I hope this inspires other Lymies that you can get better. It may be slow, but you just have to stick it out. I know it’s really hard to do that sometimes, but keep hope. Like I said, I’m not 100% better, not even close, but I’m on my way to being healthy. It may take years, but eventually I’ll be symptom free.

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