San Mateo County, CA

Infected: 2009
Diagnosed: 2014
Current Health: Almost better! Still struggles a bit, but continues to fight on.

I want to let people know they are not alone in this battle.  -Kyla C.

At 16 years of age, an honor-roll student, aspiring veterinarian, and budding philanthropist, just finishing her sophomore year of high school, Kyla no longer shows signs of the illness that ruled her life for the past 5-plus years. With several months of antibiotic treatment behind her, Kyla is successfully combating the persistent Lyme bacteria that wrought havoc on her health and immune system for much of her young life. But it was a long road, and one she hopes to help others avoid. Like many patients, and despite having experience with Lyme disease in her own family, Kyla was not diagnosed till many years after the infection. In the meantime, doctors treated her for a number of symptoms and manifestations before finally discovering the bacteria in her blood.

Here Kyla, age 16, shares her story:

“For many decades, Lyme was thought to only be on the east coast. It never occurred to anyone that life might be dramatically altered by a small tick picked up in the tall grass of California. As a child, I was always found outside, stalking the reptilian wildlife and playing in the heavy brush. Unfortunately for me, I was probably bitten by a tick somewhere around this time. A nymph or small tick could have easily latched on to my neck or scalp, going unnoticed until the disease peaked years later. Although I did have several fevers, a series of severe body rashes and allergic skin reactions, I never developed any kind of bullseye rash or known tell-tale symptoms. 

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“By age 11, I was continuously sick and covered in a rash. I had a consistent low-grade fever that accompanied my seemingly constant sore throat or irritated “asthma”. In 5th grade my tonsils were removed, and since the tonsils are a vital part to the bodies filtering of bacteria and pathogens, having them removed only worsened my already struggling immune system. My health declined and I started getting MRSA infections, as well as falling down frequently and breaking bones — causing me to be in a cast, a brace, or using crutches constantly. I suddenly seemed to develop a lack of motor skills. There was also a strong onset of cognitive issues like learning disability and ADHD-like symptoms. It was a mystery why these things were happening. I was always known as an active and adventurous child, but by then was diminished to crutches, fatigue, and asthma attacks.

“By the middle of -middle school, I had developed theKyla Cagan_rash_300 more severe psychological and neurological conditions such as depression, anxiety, panic attacks, and dyslexia, in addition to all the previously existing problems. I was crippled with poor health. I was too sick and didn’t feel well enough for anything. I am a passionate artist but had to stop drawing for over a year because my hands hurt too much to draw. I had to quit the things I loved like gymnastics and competitive rock climbing. I developed several allergies, which led to GI reactions and severe skin rashes. At this point I had been to the emergency room several times for mysterious pre-systemic MRSA staph infections and nothing seemed to make sense or fit together. 

“There was a series of misdiagnoses and mistreatments for years, including strong steroids and numbing psychiatric medications, which all caused terrible adverse reactions. I felt very ‘unfixable,’ and crazy, because I was continuously labeled and told I was something I didn’t believe I was. During this time, I did have multiple blood tests done for Lyme, but since they were the “standard” ELISA and western blot, it didn’t detect my late stage Lyme. My swollen body, hurting joints, and impaired immune system and mind screamed ‘Lyme disease!,’ but somehow it wasn’t heard, leaving me feeling invalidated and alone. 

Kyla Cagan_knee_300“As my health continued to decline and I became practically bedridden, the push for finding the right diagnosis became top priority. At 14 years old, my brain was riddled with Lyme disease, causing me to be so sick I had to stop going to school for 6 months. Although I found a more flexible school situation at Fusion Academy, a one-on-one school, the great struggle still continued. Although my health was still a mystery, transferring from a private school to a one-on-one school gave me the ability to catch up most of my missed work on my own time. 

“In April 2014, I tested PCR-positive for Lyme disease (the DNA of the Lyme spirochete was identified in my blood) as well as several co-infections such as Mycoplasma and Bartonella. Shortly after, I was put on my first round of treatment, and within 3 months I had made a complete 180 degree turn. For a period of time, my ability to function greatly increased, and I was even able to fully read again, process information, and get out with friends.

Kyla Cagan_wanimals_300“I’m currently on my second round of antibiotics after an unfortunate relapse back in January 2015. It’s still a huge struggle, but I’ve made such progress compared to two years ago, it’s unreal. Pain is relative, and although it may seem like it is horrible and unbearable sometimes, I always look at how much progress I’ve made in the last couple of years. I’ve gone from a barely functional, debilitated, and autistic-like girl to someone who still struggles physically but has her mind and true self back.

“My experience has spurred my passion for medicine and infectious disease diagnostics. I’ve shadowed scientists, gone to youth medical seminars, and have even tied my own love of animals into medicine and now want to be a vet. I volunteer at Lucille Packard Children’s Hospital, the Palo Alto Junior Museum and Zoo, and am starting to intern at a vet hospital. I want to help with the research on finding a cure for Lyme so we can put an end to this insidious disease. I have thrown fundraisers to donate money to the Bay Area Lyme Foundation and the medical teams currently funded by them. I have since learned about the enormous number of children who are misdiagnosed when in fact it is the Lyme bacterium in the brain or body. I am at the starting point of writing a book on Lyme disease from the young person’s perspective. I want to let people know they are not their illness, and that they are not alone in this battle.

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“As unfortunate as it is, a tiny tick — as small as a pinhead — can cause you to go from a fully functioning human being to a mere shadow of what you once were, leaving you sick and debilitated. As many as 7% of California ticks are infected with Lyme Disease and we are lucky…there are some counties on the east coast that have an infection rate as high as 90%! Lyme is an epidemic, impacting millions, one tick at a time. It is uncertain when the cure or even a reliable diagnostic method will be discovered, but there are many dedicated medical teams currently working hard on researching the best solution to this tremendous problem. The great efforts that the Bay Area Lyme Foundation has contributed will hopefully accelerate the road to a cure. I no longer take the simple things for granted, and although I have always been self-motivated by nature, I now have greater aspirations to make a difference in the world.”

 

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