An Open Letter to Lyme Disease Sufferers

Subject: An Open Letter to Lyme Disease Sufferers
From: Sandy Landin
Date: 13 Jan 2016

I wanted to share my daughter's story with you, in case there is someone out there who needs to hear it.

Our nightmare started, in December of 2014, when my fourteen year old daughter told me that she'd been thinking of taking her own life. This wasn't an idol threat, she meant it, and she was telling me because she didn't want me to leave her alone...she didn't trust herself.

Thus began our quest to discover what was wrong with her.

Kayla had been a joyful, happy child since the day she was born. She woke with a smile on her face and went to bed smiling. Her favorite phrase was "This is the best day of my entire life" and she had many of those days. She loved music and when she wasn't singing along to a song, she was making up her own. She sang throughout the day, she often answered questions with a sing-song voice. She loved musical theater and she was an absolute joy to have around.

Prior to her coming to talk to me that day in December, she had complained of being tired, but she was a teen, aren't teens tired all the time? She didn't want to go out with friends anymore, and I was happy to have her at home. She mentioned that she felt depressed a number of times, the teen years are hard, she would grow out of it. She dropped musical theatre, didn't even want to audition anymore, in fact, she dropped out of her singing classes too because she didn't want to practice, and I thought she was being lazy. She told me her joints ached, but I told her it was growing pains. She told me she had headaches and I gave her Tylenol. She said she couldn't concentrate and I thought she just needed to focus. She was struggling in school and I said she needed discipline. Looking back, it's hard to believe that I didn't see what all of this added up to.

What should have tipped me off was the fact that she had stopped singing. The house was quiet and I didn't even notice.

It wasn't until that day, in early December, when she came to me and said, "Mom, I really need you to hear what I'm saying..." I could see the pain in her eyes and I knew that whatever she was about to tell me was big. I sat up and listened. This is when she told me that she'd been thinking of taking her own life.

She had made plans for how she would go about it, and she knew that these were dangerous thoughts, so she came to me (thank God). She told me that she was so tired of everything - tired of living. That all she wanted to do was sleep - all the time.

She said that no matter how long she slept, she never felt rested.

Nothing mattered to her anymore and she didn't see any point in remaining alive. Her joints ached, her head hurt, her eyes hurt, she couldn't think right, and felt that her brain wasn't processing information properly. She couldn't concentrate and felt like her head was full of cotton balls. She said she was faking her way through her life and didn't want to make the effort anymore; that it was even difficult to get through the next minute.

I was terrified.

We got her in to see a therapist and we made sure she was never left alone during this time. We got her on anti-depressants as an emergency measure. Then we started going for tests. No one seemed to know what was wrong with her and her symptoms were getting worse, but she had our attention, and I think it helped her to know that we understood the serious nature of her concerns.

This beautiful girl who sang every single day, who was joyful and laughing and loved life, had become moody and sullen and silent. We had many talks during this time. I stressed upon her the importance of hanging on. That we would figure out what was going on, and that no matter how tired she was, she had to keep going because at some point, she would get to the other side of this.

We had multiple interviews with teachers trying to modify her schedule and her work load because of the "depression" diagnosis and the special accommodations did relieve the pressure she was feeling. Lyme disease was just one of the many tests we finally got around to doing (sometime in the spring). When the results were positive (on all three blood tests) and we finally knew what was wrong, it was a huge relief. We still had a long way to go, but now we knew what we were dealing with.

She was put on a course of strong anti-biotics, but it wasn't clear if this would help. We figured she had been bitten some time toward the end of summer the previous year. Now, in spring we wondered if the anti-biotics would even help. After several weeks we began to see improvements. Her mood changed gradually. She barely got through the school year.

She spent the summer sleeping. She slept at least 17 hrs a day at first. But slowly, week after week we began to see improvements. She turned fifteen in the summer. She had a pool party and it was so great to see her smiling and laughing again. By the end of the summer she only had to sleep 10 hrs a day and her mood was much better. She began the tenth grade in September and insisted on taking the AP courses.

She was beginning to enjoy the company of her friends in school. She went to a couple of football games and dances. She was talking about her subjects again, telling me about her teachers, participating in class, having fun. She started laughing again.

Then I heard her sing. It was only part of a little song and she didn't know I was listening. I didn't say anything, didn't want to jinx it, but she was singing and I knew that was a very good sign.

The singing continued, sporadically at first, then a little every day. One day she came to me and said she had written me a song. It was about her struggle and how I had helped her. She played it for me, and I cried, not because she was thanking me, but because she had found her music again, and I knew she was out of the woods. She has written a number of songs since then and sings every single day.

It was a remarkably fast recovery, considering she was only diagnosed eight months ago. Gradually, over the last couple of months, she cut back on the anti-depressants and finally, took the last pill over a week ago and that has gone well.

She isn't 100% yet. She still has trouble focusing and her grades aren't great, but she is improving. She will get through the tenth grade without a modified schedule and has kept up with the AP classes, although that was a challenge. Her teachers say that she not only participates, but that she is the life and energy of the class. That's what she is here at home too, the energy and the spark that keeps us going...it's a long way to have come, but her passion is back and she's talking about her future again.

Lyme disease nearly took her life. She is young and strong and has bounced back. She is nearly her old self again. We expect the improvements to continue, but what I can tell you is that she is finally happy.

Hang in there. You will get your health back. Be patient. Let your body heal, you have to give it whatever time it needs. Everyone may not be able to wait for you, but you're the only one who really matters. It's only you who has to be patient and allow your body the time it needs to heal, it doesn't matter what the rest of the world does or thinks. Just don't give up on yourself...don't ever give up. You will be yourself again. You will come out the other side and you will be happy again, just hang in there.

Sandy Landin

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