San Francisco BayArea, CA
Cured: Almost better! Still struggles a bit, but continues to fight on.
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 combating the persistent Lyme bacteria that wrought havoc on her health and immune system for much of her young life. Like many patients, and despite having experience with Lyme disease in her own family, Kyla was not diagnosed till many years after the initial onset of the infection. In the meantime, doctors treated her for a number of symptoms and manifestation before finally discovering the battery in her blood. It was a long road, one that she hopes to help others avoid. She wants to let others know they are not their illness, and they are not alone in this battle. Here she 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 bulls-eye rash or known tell-tale symptoms.
By age 11, I was continuously sick and covered in a rash. I had a constant 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 as well, like learning disability and ADHD-like symptoms. It was a mystery as to why these things were happening I was always known as an active and adventurous child, but by then was diminished to crutches, pain, fatigue, and asthma attacks.
By the Mid-middle of middle school, I had developed the 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 and I had to quit the things I loved like gymnastics and competitive rock climbing. I developed several allergies which induced 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, twice on IV for a week as the infection streaked up my limbs, 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 stageLyme. My swollen body, hurting joints, and impaired immune system and mindscreamed ‘Lyme disease!," but somehow it wasn’t heard, leaving me feeling invalidated and alone.
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, 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 on most of my missed work on my own time.
In April 2014, I tested PCR-positive for Lyme disease bacterium ( 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, within 3 months I had made a complete 180 degree turn. For a period of time, my ability to function had greatly increased, and I was even able to fully read again, process information, and get out with friends. I’m currently on my second round of antibiotics after an unfortunate relapse back in January 2015. It’s a constant struggle for my mind and body, and I hope for a cure. 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. I still struggle but continue to fight on.
My experience has spurred my passion for medicine and infectious disease diagnostics. In inspiration of my past, I’ve shadowed scientists, gone to YPO youth medical and leadership seminars, and have even tied in 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.
It’s still a huge struggle, but I've made such progress compared to 2 years ago, its unreal. Pain is relative, and although it may seem like its 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.
Almost better! I still struggle a bit, but continue to fight on.
Don’t give up. —Kyla C.
What I understand about Lyme Disease
As unfortunate as it is, you can go from a fully functioning human being to a mere shadow of what you once were: sick and debilitated, caused by a tick as small as a pin head. What was once thought as rare is now as much as 7% of ticks are infected with Lyme Disease in the state of California, and that’s the short end of the stick as far as infection percentage. There are some counties in the east coast that have as much as a 90% infected tick rate. Lyme is an epidemic, impacting millions, one tick at a time. It is unsure 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.
Lyme is a silent epidemic. In 2013 the CDC released the actual infection rate of 300,000 new cases yearly, which is 10 times more than originally thought by the public. Millions are currently infected, and many remain undiagnosed and debilitated. Lyme disease is caused by a bacterium in the spirochete class: BorreliaBurgdorferi. It exists mainly in North America and Europe, and is transferred to humans or dogs from the bite of a hard-bodied tick (ixodes), the carrier being the white-footed mouse. B. burgdorferi is an obligate parasite, which makes it so it cannot complete its life cycle without exploiting a viable host, and it is anaerobic, which means it thrives where there is less oxygen. Since the Borrelia spirochete is shaped like a corkscrew, it drills through the bodywithout mercy, causing a slew of problems such as joint deterioration, nerve damage, and vision problems. It also causes a chronic secretion of the stress hormone, disrupts neurotransmitters, interferes with immune function, disrupts grey matter connections in the brain, and wreaks havoc in the central nervous system; which is where the infection often mainly targets. All of these things cause symptoms that are difficult to find the root of like: attention issues, memory loss, complex cognitive impairment, emotional impairment, and neuropsychiatric conditions. A long-lived and damaged inflammatory response is often the most damaging factor.
Lyme disease impairs the immune system so that after the initial onset of the disease, the body cannot fight Lyme, or other disease off any longer.This presents by an initial high fever, or series of fevers, and then a complete drop in body temperature. This means that the disease has over ruled the body’s inflammatory response. It evades the immune system and antibiotic treatment by changing forms and hiding in the host where the antibiotics cannot reach like the fascia, collagen, heart lining, and intracellular matrix. In order to hide from the NK cells and macrophages, the spirochete must hide by decreasing expression of the surface proteins that are targeted by those antibodies, and uses antigenic variation by coating itself in CD47 to evade immune response. When the Lyme changes form to resemble the own host’s tissues, it can trigger an autoimmune response, which causes the body to attack its own tissues. Lyme inactivates key immune components, which lets other dangerous bacteria’s and coinfections that would not normally be able to pass through first defense, or tagged by natural killer cells.
Unlike commonly thought, most Lyme patients never get the initial “bulls eye rash”which has been the media trademark of Lyme for decades, and this is why it often goes unnoticed. In reality, only around 30% of patients with Lyme disease get the bulls eye rash. The most common onset symptoms are unusually high fever(s), extreme dizziness, extreme nausea, as well as general achiness andpain. These initial symptoms can often be overlooked as mono or a strong flu. Lyme is the mimicking bird of diseases, closely copying symptoms from different diseases such as ALS, MS, rheumatoid arthritis, and autism. If left untreated past the point of 3-5 months, Lyme disease can persist to its debilitating later stages. The most common symptoms follow: Joint pain, muscle pain, muscle weakness, shortness of breath, sore feet, impaired vision, light sensitivity, vertigo, dizziness, nausea, neurological impairment, working processing disorder, brain fog, memory loss, psychological impairment, spinal pain, motorand sensory impairment, and migraines. Although there are many overlapping symptoms, manifestations are very different for each Lyme patient and can range in severity depending on age, time of infection, strain, and type of coinfection(s). Most Lyme patients also contract a few co infections from the tick bite such as Mycoplasma, Babesia, Bartonella, Ehrlichia, and Rocky Mountain Spotted Fever, all of which have different symptoms and methods of treatment and diagnosis in addition to the Lyme. Although now proven to be a legitimate condition, “Chronic Lyme disease” is highly controversial and still notbelieved to be true by some.
The diagnostics of Lyme Disease is very faulty and not accurate since there is not yet much known about how the disease fully works and how it affects the host. Blood tests or Lumbar punctures (CSF) are the only current ways we have to test for Lyme disease. The Western Blot and ELISA are the most commonly known Lyme tests, but are only around 60% accurate and only for the onset of the disease. If positive, the PCR tests are 99.8% accurate, but there are many false negatives as well, and has around a 60% accuracy if negative. The flawed diagnostics leaves patients in question of their health. Although there aren’t many Lyme induced deaths, the disabled immune system can make it where the individual symptoms are the killers, rather than the disease itself. Complications can lead to many potentially deadly diseases such as systemic MRSA Staph infection, and Cancer.
There is no current cure for Lyme disease, but there are treatments. However, the treatments are not well studied, and can be unpredictable and very damaging to the body. It usually takes about 2+ years to be put into potential remission by treatment, with great possibility of relapse. The route of treatment for Lyme disease is very much dependent on an individual basis and several factors such as: how long they’ve been infected, disease severity, strain, and what co infections the patient has contracted. For oral antibiotics, the most common are minocycline, erythromycin, ceftin and doxycycline and for IV treatment, the most commonly used is Rocephin. There are many dangers to long-term use of both oral and IV antibiotics, but they are all we have presently to regain our lives back.
Minocycline is a broad spectrum tetracycline antibiotic, and is used to treat bacterial infections. It is the most common drug used in combination to treat Lyme disease. The timed-release pills prevents a spike of the drug in the system, hopefully keeping it balanced throughout the day and night. Minocycline crosses the blood brain barrier, which is very important in the process of targeting Lyme disease since Lyme can cause infection in the brain and it loves to hide in places where typical antibiotics cannot reach. This drug is very powerful in treating Lyme, but can also cause great harm to the body, like in the kidneys and GI tract. Medicines such as Azithromycin, Macrolides,Fluoroquinolones, and Tetracyclines target bacteria and organisms that reside intracellular. They prevent the bacteria from growing by interfering with their protein synthesis, inhibiting its mRNA translation. It is the most common drug for co-infections such as mycoplasma and other skin, ear, or respiratory infections. When used in non-Lyme patients, it is usually taken for short bursts of 5 or so days, but with Lyme patients it can be taken daily for months at a time. This can cause damage to the liver, kidneys, and digestive tract due to long term usage of a strong drug. Septra is yet another medication used to treat bacterial co infections such as Bartonella, and is supposed to target and stop the growth of bacterium. I have added Loratadine, which is commonly in allergy medications such as Claritin or other over the counter allergy medication. A study funded by the Bay Area Lyme Foundation at StanfordUniversity proved that Loratadine blocks the spirochete from absorbing the mineral manganese, which is necessary for its survival.
All antibiotics are very similar in the sense that in the process of ridding of an infections or bacteria, it also destroys important good bacteria in the patients body and gut. The process of antibiotics treatment of high doses can cause both short term and long term or even permanent organ damage, with great health risks. It’s a toss up whether or not long-term antibiotics are worth the bodily torment or not. But what is ones alternative with the present situation of such lack of medical information around Lyme, the unreliable diagnostics and ineffective treatments of curing the disease. This is presently all we have. However, I have faith a cure will soon be discovered in our near future.