This story was originally published by the Bay Area Lyme Foundation.
Singer/Songwriter & Spokesperson for LymeLight
Infected: 2007
Diagnosed: 2008
Current Health: Fighting strong. Pushing through, even on the bad days.
Here I am, living my dream… But I continue to fight. And it’s a hard fight. I cry my eyes out sometimes. It can be hard to be happy at times. But this life is all I have and I have to make the most of it … What do I have to loose? -Kêta
“My name is Kêta. I am 17 years old and am currently living in Los Angeles CA. I am a recording artist / songwriter and a spokesperson for the LymeLight Foundation. This is my Lyme story…
“I am originally from Southern Indiana. I was an average, healthy girl, living a very healthy and active lifestyle. When I was a child, my best friend was a Boy Scout and I was very much a tomboy at the time. We would spend most our days outside, in the woods, hiking, climbing trees, etc. That is how and when I contracted Lyme disease.
It was in Floyd County, Indiana in 2007, when I was 10 yrs old. I had been at this friend’s house and been hiking in a very wooded area. We came home late that evening and didn’t check for ticks. The next morning a tick was discovered on my scalp that had been there the previous day and overnight. My mom removed the tick, cleaned the area with alcohol, and didn’t think a thing of it.
“Not long after this, my health started to rapidly decline… it started with flu-like symptoms and fatigue. We assumed it was just a virus and that it would pass. Weeks and months passed and more symptoms began to pile up. At one point I had a list of daily symptoms that was almost two pages long. I went from being a very active, healthy little girl, to a young girl spending most of her days laying on her back and in so much pain.
“We would make doctors appointments and my pediatrician would send my blood off to be tested, testing me for everything imaginable … except Lyme! I was offered sleeping pills (I had a hard time sleeping) and asked if I was ‘depressed’ (when you’re sick and no one knows what is wrong with you, it is indeed depressing!). Finally, after much pressure, my doctor ran a basic, standard and unreliable ‘tick-titer’ test that came back negative. I tested positive for mononucleosis (most all Lyme patients do) and at that point, my doctor felt that was the answer for my overall condition. In addition to all of the mysterious neurological pain, tingling, numbness, and muscle/joint pain, I also had Bell’s palsy twice, a condition that is not associated with mono, but is a common Lyme symptom. My parents kept asking for a more comprehensive Lyme panel test from IGeneX Labs, but the doctor did not want to order this test because ‘Lyme doesn’t exist here anyway.’
“As my health continued to decline, my parents became more impatient and were very persistent about the need for this additional test. We eventually approached a doctor my grandparents knew and he agreed to order the test. When the test results came back, the doctor said the results showed that I had late-stage Lyme.
“I went undiagnosed for 12 months before they discovered it was Lyme. It had totally destroyed my health and vitality. We traveled to see a Lyme specialist in New York immediately to begin a treatment protocol. By that time, it was painful to walk up and down stairs (I had to scoot on my bottom) and was using a cane on bad days. Just holding a book up to read was exhausting. I couldn’t concentrate, along with the many other common symptoms of Lyme.
“I made two trips to New York within the first six months of my diagnosis and to start my treatment on high dose, long-term antibiotics. We later found a doctor in Missouri, closer to where we live, and began making trips to there for continued antibiotic treatment. His protocol was basically the same as the doctor I was seeing in NY: high dosage, long term antibiotics. This therapy continued on for 12 months. After those 12 months, we made the decision to go a more naturopathic route.
“Desperate to find relief from my lingering symptoms, we began a steady regimen of all-natural anti-inflammatory, nutrient rich supplements. After 6 months, my symptoms lessened to the point to where I could feel myself begin to start to recover and heal. I also changed my diet to a strict anti-inflammatory diet. In the process of making healthy choices and taking nutritional supplements, I lost 50 pounds, which also helped tremendously in my healing. I even started martial arts full time and began working out with a trainer to gain mobility and strength.
“Fast forward almost 8 years now, and here I am, living my dream in spite of my health conditions. Having Lyme was the inspiration for my first album that got my career started here in the entertainment business. Today, I continue to fight this battle… And it is still a hard fight. I deal with a list of daily symptoms ranging from fatigue, severe shooting pains in various areas, constant joint pains, headaches, etc. I look completely healthy so I have to deal with people who don’t understand the pain I go through… They may think I’m complaining or that I’m just having an “off day”, when the reality is, I face pain on any “good day”.
“I am thankful for the Lyme community. We need each other. We understand each other. I have learned so much through my journey. I appreciate the good days so much more. As ‘Lymies,’ we don’t have that much control over the way we feel physically, but we can control our mindset. I believe that a positive, hopeful mindset helps with recovery. I cry my eyes out sometimes. It can be hard to be happy at times. But this life is all I have and I have to make the most of it… What do I have to lose?
“You wouldn’t think by looking at me and knowing what I do for a living that I deal with so much everyday. I perform on stage, I go on tour, I work long hours in the studio… My social media (@ketamusic) is full of smiling pictures and positive quotes. But I work and pray and suffer through to get to where I am today. I’ve battled and continue to battle both the physical and mental effects of Lyme and I am using it to be a voice for our community.
“A lot of the inspiration for my music is driven from my struggles. I address the negative and draw out the positive. (You can find my music on iTunes by looking up my name KÊTA or the name of my EP Generation Call.)
“Some lyrics to my songs are :
Have you felt pain you thought never would go away? Don’t be afraid, and never give up your faith. — Kingdom Rising
When you’re alone, it’s just a house it’s not a home. And when you’re alone, there’s a chill inside your bones. There is a fire in your heart you just have to find it. Fear is a liar, don’t let it break you and leave you blinded. — Hearts On Parade
All these giants don’t seem so big to me. Heart of a lion, I’m stronger than I seem. — Giants
“I remember laying on our couch, silently crying to myself as a little girl because I could’t see a light at the end of the tunnel. I still have those moments. Those moments where I just want to give up. It’s okay to have those moments. What we deal with is VERY REAL! It’s hard, it hurts, it’s taken so much from us.
“We have to educate others on how real Lyme is. The impact it is making on our lives… People need to know! We have to move forward in finding a cure! Lyme is the fastest-growing infectious disease in the world. It is so hard to get proper treatment because most insurance companies only pay for a few months worth of treatment, if even that much. Lyme has over 300 different symptoms…
“Use your voice to make positive change. It is the only voice we have. Speak up. Speak often. God bless.”
