Karla's battle against Lyme Disease
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My name is Karla Stack, I’m a twenty-year-old student from Dublin, Ireland. I have late stage Lyme Disease and many of its associated co-infections . Due to the fact that I went undiagnosed for almost five years and the lack of recognition of Lyme Disease by the H.S.E, I have had to obtain treatment from a specialised clinic in Washington D.C, U.S.A. The significant financial overhead of Lyme has meant that I’m now making every effort to raise funds to cover the high costs associated with my treatment and recovery from this debilitating disease in order to get my life back.
I am a private person and if were up to me nobody would know about the health struggles that I’ve kept hidden up to this point. My parents (Pat & Vera) have been my rock. However, my current circumstances now mean that as a family we can no longer carry this burden alone and need all the help and support that we can get. By sharing my own story and situation I hope to spread awareness about Lyme Disease.
Lyme disease is a multi-systemic infectious disease transmitted by the bite of an infected tick. It’s relatively easily treated if detected at an early stage and the appropriate antibiotic treatment is prescribed. Most people (approx. 2/3) get the tell-tale red “bulls eye rash” which alerts them to the fact that they have been bitten by a tick. However, I was not so fortunate and was left suffering for nearly five years undiagnosed. If Lyme is left untreated it can cause serious long-term problems.
Nobody could figure out what was wrong with me and as such I was left suffering for years undiagnosed. I ended up in A&E several times and there were many nights where I thought I wouldn’t make it to the morning. I was only fifteen when it started and I was terrified. I met with 13 consultants and had various medical tests. I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. However, my condition continued to deteriorate. I was finally diagnosed with Lyme Disease in January 2017. I feel both let down and deeply disappointed by the Irish Health System’s inability to detect, diagnose or treat me for chronic Lyme Disease. They repeatedly dismissed my concerns.
The disease attacks all the major organs and systems within my body. My symptoms are varied. Some days I am crippled with arthritic pain in my knees, hips and neck. My joints feel like they are on fire and they swell up meaning each step I take hurts. Whereas another day, I can suffer from severe migraines. My brain swells and crushes against my skull. The back of my head and forehead throb. I can’t think straight. I vomit from the pain. My body becomes sensitive to light, sound and smells. On a bad day it all comes at once. The pain is unimaginable and unbearable. I wouldn’t wish it on anyone. Not to mention the everlasting fatigue and flattened immune system. I never feel fully refreshed from sleep. I can get tired from doing practically nothing. I have to rest regularly throughout the day. I have experienced several other symptoms but I can’t mention them all.
I am not as okay as I pretend to be. My illness is invisible which makes it even more difficult and isolating. To look at me I look “normal”, some would even say “healthy”. However, that is far from the truth. I live the majority of my life in pain. I do things at pain levels others wouldn’t even consider moving at because if I don’t I won’t have a life. I make the most of the good days and fight through the bad ones. I want to still be me and not just my illness. I can hide it beneath a smile and say that I’m fine but that doesn’t mean that it’s not there. It’s nearly always there. Despite having a high pain threshold, nobody can continue to tolerate physical pain forever. A normal life is a distant memory to me.
It’s a thief. I have lost five years of my life that I will never get back and I often feel like I only survive to be bedridden, eat (if I can) and sleep. I don’t fully live anymore. I used to love music, I played the flute and was a member of a concert band but had to give this up due to my deteriorating health. I also loved drama when I was younger and enjoyed going for long walks or jogs. I can only manage the occasional short walk to clear my head nowadays. My hobbies now include going to physio, acupuncture and bio-magnetism! For me it is not enough. I want my freedom, independence and dignity back.
The hardest thing for me was not being able to complete my Leaving Cert in 2015 due to missing so much time from school in 5th and 6th Year. I was suffering from memory problems and concentration issues owing to the disease. It was taking me twice as long to complete homework and study. I had been a good student prior to this. I did my leaving cert maths exam and had to leave the other six subjects until the following year. It was heart-breaking having to watch my friends go off to college and start the next chapter in their lives without me. I was determined to make every effort to not let my circumstances hold me back and as such I somehow managed to get through the exams in 2016 despite constantly missing class time and playing catch up. I’ve since begun studying in UCD, which leads people to presume that I must be doing better. However, I’m unable to fully engage myself in college life as I’m still battling this disease.
As I have been living with Lyme for nearly five years, it means that treating it is and will continue to be difficult. The Irish Health systems lack of ability to diagnose along with their subsequent misdiagnosis of my illness has led me to seek medical assistance elsewhere. I have chosen the U.S as they have the necessary experience and expertise to treat my disease. I went state-side for an assessment and consultation in May. I was advised that it is uncertain as to how many rounds of treatment I will need to get rid of the disease due to the fact that each case is unique. However, the doctors are optimistic that I will recover.
I have since begun intensive oral antibiotic treatment in conjunction with herbs, supplements and vitamins. I was advised to continue with physio, acupuncture and bio-magnetism and also to make significant changes to my diet. I am returning in January for a further consultation and will have to return bi-annually whilst receiving treatment. Phone consultations are used in between face to face visits. Treatment is and will continue to be difficult and side effects include nausea, swelling of the brain, vomiting and diarrhoea due to a Herxheimer reaction (when the bacteria dies off and increases inflammation and toxicity in the body).
My parents have been paying for all my treatments both medical and alternative which is financially draining on them. As much as they would like to, they cannot afford to cover these costs. Lyme being an unrecognised disease also means that our health insurance is affectively null and void. We estimate that we will need to raise in the region of €50,000 to cover the growing costs of my treatments. I know that this is a lot to ask for but any assistance whatsoever would be hugely appreciated. I am determined to get my life back and overcome this disease.
Thank You,
Karla
“Be strong enough to stand alone,
smart enough to know when you need help,
and brave enough to ask for it “
I am a private person and if were up to me nobody would know about the health struggles that I’ve kept hidden up to this point. My parents (Pat & Vera) have been my rock. However, my current circumstances now mean that as a family we can no longer carry this burden alone and need all the help and support that we can get. By sharing my own story and situation I hope to spread awareness about Lyme Disease.
Lyme disease is a multi-systemic infectious disease transmitted by the bite of an infected tick. It’s relatively easily treated if detected at an early stage and the appropriate antibiotic treatment is prescribed. Most people (approx. 2/3) get the tell-tale red “bulls eye rash” which alerts them to the fact that they have been bitten by a tick. However, I was not so fortunate and was left suffering for nearly five years undiagnosed. If Lyme is left untreated it can cause serious long-term problems.
Nobody could figure out what was wrong with me and as such I was left suffering for years undiagnosed. I ended up in A&E several times and there were many nights where I thought I wouldn’t make it to the morning. I was only fifteen when it started and I was terrified. I met with 13 consultants and had various medical tests. I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. However, my condition continued to deteriorate. I was finally diagnosed with Lyme Disease in January 2017. I feel both let down and deeply disappointed by the Irish Health System’s inability to detect, diagnose or treat me for chronic Lyme Disease. They repeatedly dismissed my concerns.
The disease attacks all the major organs and systems within my body. My symptoms are varied. Some days I am crippled with arthritic pain in my knees, hips and neck. My joints feel like they are on fire and they swell up meaning each step I take hurts. Whereas another day, I can suffer from severe migraines. My brain swells and crushes against my skull. The back of my head and forehead throb. I can’t think straight. I vomit from the pain. My body becomes sensitive to light, sound and smells. On a bad day it all comes at once. The pain is unimaginable and unbearable. I wouldn’t wish it on anyone. Not to mention the everlasting fatigue and flattened immune system. I never feel fully refreshed from sleep. I can get tired from doing practically nothing. I have to rest regularly throughout the day. I have experienced several other symptoms but I can’t mention them all.
I am not as okay as I pretend to be. My illness is invisible which makes it even more difficult and isolating. To look at me I look “normal”, some would even say “healthy”. However, that is far from the truth. I live the majority of my life in pain. I do things at pain levels others wouldn’t even consider moving at because if I don’t I won’t have a life. I make the most of the good days and fight through the bad ones. I want to still be me and not just my illness. I can hide it beneath a smile and say that I’m fine but that doesn’t mean that it’s not there. It’s nearly always there. Despite having a high pain threshold, nobody can continue to tolerate physical pain forever. A normal life is a distant memory to me.
It’s a thief. I have lost five years of my life that I will never get back and I often feel like I only survive to be bedridden, eat (if I can) and sleep. I don’t fully live anymore. I used to love music, I played the flute and was a member of a concert band but had to give this up due to my deteriorating health. I also loved drama when I was younger and enjoyed going for long walks or jogs. I can only manage the occasional short walk to clear my head nowadays. My hobbies now include going to physio, acupuncture and bio-magnetism! For me it is not enough. I want my freedom, independence and dignity back.
The hardest thing for me was not being able to complete my Leaving Cert in 2015 due to missing so much time from school in 5th and 6th Year. I was suffering from memory problems and concentration issues owing to the disease. It was taking me twice as long to complete homework and study. I had been a good student prior to this. I did my leaving cert maths exam and had to leave the other six subjects until the following year. It was heart-breaking having to watch my friends go off to college and start the next chapter in their lives without me. I was determined to make every effort to not let my circumstances hold me back and as such I somehow managed to get through the exams in 2016 despite constantly missing class time and playing catch up. I’ve since begun studying in UCD, which leads people to presume that I must be doing better. However, I’m unable to fully engage myself in college life as I’m still battling this disease.
As I have been living with Lyme for nearly five years, it means that treating it is and will continue to be difficult. The Irish Health systems lack of ability to diagnose along with their subsequent misdiagnosis of my illness has led me to seek medical assistance elsewhere. I have chosen the U.S as they have the necessary experience and expertise to treat my disease. I went state-side for an assessment and consultation in May. I was advised that it is uncertain as to how many rounds of treatment I will need to get rid of the disease due to the fact that each case is unique. However, the doctors are optimistic that I will recover.
I have since begun intensive oral antibiotic treatment in conjunction with herbs, supplements and vitamins. I was advised to continue with physio, acupuncture and bio-magnetism and also to make significant changes to my diet. I am returning in January for a further consultation and will have to return bi-annually whilst receiving treatment. Phone consultations are used in between face to face visits. Treatment is and will continue to be difficult and side effects include nausea, swelling of the brain, vomiting and diarrhoea due to a Herxheimer reaction (when the bacteria dies off and increases inflammation and toxicity in the body).
My parents have been paying for all my treatments both medical and alternative which is financially draining on them. As much as they would like to, they cannot afford to cover these costs. Lyme being an unrecognised disease also means that our health insurance is affectively null and void. We estimate that we will need to raise in the region of €50,000 to cover the growing costs of my treatments. I know that this is a lot to ask for but any assistance whatsoever would be hugely appreciated. I am determined to get my life back and overcome this disease.
Thank You,
Karla
“Be strong enough to stand alone,
smart enough to know when you need help,
and brave enough to ask for it “
Organizer
Karla Stack
Organizer
