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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

A life completely transformed due to a single tick bite. It’s crazy to think one tiny little bug can do such insane damage to a human’s body. Lyme Disease is very real and very scary. My organs fight hard every day to defeat the deadly bacteria. Even though my life has completely changed, I am grateful for this tick. It’s like it knew I needed to learn all these lessons about life and death. It is a difficult journey experiencing a chronic illness that has no cure or remedy. But with my faith I know healing is not impossible. God has my life in His hands and I know the lessons I’ve learned during this journey through illness have shaped me into a better human being. But don’t get me wrong, if I ever have another tick on my body… you will hear me screaming and running away like a screeching monkey!!

To my fellow Lymies: Don’t let Lyme overcome your life, let your strength overcome this disease. You are more than this disease. You are a beautiful warrior soul who has purpose. This may feel impossible to overcome. But it’s not. You can overcome anything if you set your heart and mind to it. Why? Because we are more than our diseases, we are more than Lyme. <3 Sending love, prayers, and hope out to you all!

Follow this Lyme warrior’s journey here.

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

When I was diagnosed with Lyme two years ago, I felt relief that I wasn’t crazy after years of misdiagnoses. I felt hopeful because I thought there would be a clear treatment plan. I’ve learned that a clear plan doesn’t exist. I’ve been lucky to work with some amazing doctors and am still pursuing many alternative treatments. I feel better today than I did two years ago, so I’m holding on to that. I’m hopeful that each day I will feel better. Let’s find a cure and Dear Universe, please let’s make it affordable!

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How has Lyme Disease affected your life?

I believe I have had lyme disease since October of 2008. I was undiagnosed for 6 months until I heard of a class mate’s sibling who had lyme and got tested myself. After multiple tests, I got positive one. I never saw a tick or the bite or the rash. I had no idea what or that anything was happening to me when it all began.

I do not like to complain about much and I tried to ignore the, at that time, minor symptoms. I was a straight A student in high school who put a lot of time and effort into my school work. I also ran cross country and indoor and outdoor track for 6 years and was the other component in my identity. I just blamed stress for the changes I initially saw in me and ignored them and kept going. I started to experience increasing fatigue and moderate dizzy/headache spells. My grades started to drop and I found it impossible to not fall asleep in class. My thought process, speech, and memory started to deteriorate. Cross country and track that year became much more difficult. Everything I found my identity in was slowly slipping away.

Eventually, my family started to notice and thought that I got to the point where medical intervention was required. I went to my family doctor for some common stress medication multiple times over the next 6 months. The worst health related injury that had ever happened to me was a severe case of the flu so I rejected the idea that something serious was happening to me. Over the months, I slowly started wondering if something was really wrong and what it was and what it was doing to my body and my life that I worked hard to build.

After the 6 months, I heard of a class mate’s older sister had lyme and how it had affected her. Luckily, I was able to get an appointment with her infectious disease doctor and after he suggested getting tested and a positive results on a third test, get accepted as a patient. At that point, it was summer and I spent the summer mostly indoor and missing out on a lot of good times with friends and was restricted to spending most of my days indoors. That’s when the pills started. It started with around 10 to 30 and at most 69 pills a day.
The next year consisted of everything falling apart even more. I was not able to do Cross country or track. My grades became the lowest they had ever been in high school. The list of symptoms got longer and more severe than before. Extreme fatigue, extreme “brain fog” to the point where I couldn’t even tie my shoes some days, migraines, dizzy spells, hypoglycemia, hypothyroidism, pots syndrome and more. I had to go on various diets to avoid sugars and gluten. Depression started to consume me. I don’t have to explain how alone I was and still am to anyone on this website because everyone already knows what that is like. My body was no longer under my control and in a way, it felt like I wasn’t even living inside my own body any more. As I said in the first paragraph, everything I found value in was taken. I no longer had my self-worth in my grades and intelligence. I no longer had my one and only outlet that was cross country or track. While I still socialized with my friends, I found that communication between them and I became empty and difficult even though nothing had changed between us.

In 2011, the pills had not had any effect to that date so my doctor had me get my first picc line. In the surgery, the pain killer that they gave me for the surgery didn’t have an effect on me and the procedure was quite painful. I ended up having to receive 3 new lines due to scar tissue clogging the line. The spot where the line and bandage covered soon got irritated to the point where I would bleed when the bandage had to be changed each week. My fourth and last picc line gave me a blood clot in my arm which broke free, traveled through my heart, and then came to rest in my lungs. The hospital said it was severe cramps and to rest it off. Luckily I suffered through it and am still here today able to write this story. After that I had the line pulled out. And went back on pills.

Only two of the iv antibiotics ever had an effect. One I was allergic to and made for one rough day and night. The other was the only drug to actually make a positive reaction. It made my health increase to the point where I was able to live a normal life again. That only lasted for a month or two however. The last year of high school my health was so bad that I spent most of it coming home early from school because I couldn’t manage getting through the school day.

In August 2012, my health took a turn for the worse again and I graduated high school and went on to college. College was the hardest thing I have and might ever do. I’m still not sure how I made it through to this day. The first two years are a haze of depression and anger and struggle. It was the most alone I have ever been in my life. College was next to impossible with the brain fog and fatigue. Every class I sat through I had to silently push past what I thought I could in that hour.

April of 2013 I decided, against the advice of my doctor and my own body, I decided to go on a missions trip for two weeks in Brazil. It opened up my eyes again to the world and gave me hope again. When I got back, my health was back to what it was on the good iv drug. I’ve read about multiple things that could have helped my health that was on the trip. I can’t pin one down to this day. Since then, I’ve been off all medicine and have been able to manage a relatively normal life. The last two years of school was just as hard but at that point, but I was more use to school life and learned how to manage my time and energy more effectively to get through it. I was never able to go out and do anything social. I spent all my college days in class or in my room sleeping or working on school work.

I’m currently off any medication. I am able to live a low key normal life. I’m still struggling very much but I’m good enough to keep going and fighting to live my life. I’m very thankful for that fact. I just arrived home from another missions trip to south Africa. The experiences I experienced and knowledge I learned during the trip is immeasurable. I had to sit out some days and miss out on some things I wish I could have done. However, South Africa will stick with me for the rest of my life. In the beginning of January, I am planning on going on a third missions trip to Mexico.

My next goals are to find a job. I am hoping that my brain fog doesn’t make it difficult to do well in whatever job I find. I am also going to become a mentor for high school kids through an organization called Young Life. I am looking forward to helping and sharing my wisdom with the next generation. I still have to fight everything I want each day but my mind is use to the struggle and it doesn’t depress me as much. I am not able to run or do nearly as much as I use to those 8 years ago and I won’t ever be able to again. Every morning I am in physical and emotional pain from the moment I open my eyes and every night I dread waking up in the morning, but I’m content with having the ability to leave my house and being able to go to a job or spend time and socialize with friends.

What inspires you?

One quote I often refer to in my head is “The only thing necessary for the triumph of evil is for good men to do nothing.” (- Edmund Burke) I’ve seen and experienced evil in the world. Lyme disease resting towards the top but not the only one on that list. I can’t change anything about my lyme. But one of the few things that hasn’t been taken away is the choice to keep moving forward. It took me a few years to figure that out but it’s true, at least for me. The one thing that has consistently let me do that is doing the most I can to make sure more “evil” does not prevail in others’ lives. Either on the other side of the world or in my hometown. Helping others is the only thing that I have found through the years that keeps me moving forward.

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How has Lyme Disease affected your life?

I was a young girl when Lyme began to alter my life. I wouldn’t know why I had the persistent dizzy spells, infections, vertigo or any of the numerous other symptoms I experienced until I was nearly 27 years old.

Lyme took pieces of my normal at first. A missed day or two of school here, a week there. Limited ability to keep up in PE, but I would try to muscle through. ER visits that ended with pain meds without a clue as to the cause of my pain.

In college things began to progress more. I now recognize it was when I had some of my first bouts with depression, began to lose feeling in my right arm and hand, had trouble sleeping normal hours, and began experiences stronger neurological issues.

Since the age of 24, things have gradually spiraled downward with my health. The most significant change beginning at age 26, when I became too disabled to work or function normally.

In many ways, Lyme has stripped me of the life I used to live. Even though I was sick before the worst decline began, I could function. I could hike when I was up for it, work long days when needed, attend functions and be actively a part of society.

Now my days are spent at home. Treating, detoxing, healing. I spend my days focusing on beating this dang tick that stole so much of my ability and normal.

And as much as this disease has taken from me, Lyme has not, WILL NOT take my spirit. My passion. My drive for wellness and for finding purpose, even in this disabled life.

The fire in my heart for comforting others in their own fight with Lyme and spreading awareness is fanned into a blaze with each day of suffering I face, each day I step closer to healing. This is not the end of my story…this is merely one chapter that happens to be tinted Lyme.

What inspires you?

Every time I hear another Lyme patient’s story, my heart is filled with gratitude and inspiration. I can see the fight within them, the strength and courage it takes to face each day of suffering.

This road is not easy, and the stories of all the other warriors fighting their own daily battle encourages me to keep going. To keep fighting for health, for awareness.

Their light and honesty in the struggle give me comfort. They inspire me to find my own strength and keep climbing.

“Healing comes in waves
and maybe today
the wave hits the rocks
and that’s ok,
that’s ok, darling
you are still healing
you are still healing.”

-Ijeoma Umebinyuo

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© Tick girl illustration by It’sNotJustLyme.com

How has Lyme Disease affected your life?

I was a wild thing – backpacking through Europe and Africa, drinking, sleeping in train stations and generally not giving a rats a$$. I came home with Lyme but didn’t know it. All I know was something was very wrong – a few somethings were wrong with my body. I tested negative for Lyme initially and carried on seeing a mary-go-round of specialists for 3 years. It was rough. I couldn’t walk for a few days at my worst. How did Lyme affect my life? Well, my days of traveling the world came to a gloomy end, but I found this insane passion for medical research. It began with Lyme and ventured off into physiology, anatomy, nutrition, genetics, immunity, etc. I love research and one of my favorite pastimes – no joke – is shopping for used medical text books. Lyme ultimately affected me in a bittersweet way. I didn’t get the life I thought I’d have, but I became more compassionate and started living my life not just for me but for everyone in this boat with me. I am happy – not that I got Lyme – but that I experienced hardships in my life that have put me on the next level of spirituality than I previously had reached. My travels were about soul-searching, afterall, so Lyme has been quite the journey.

What inspires you?

Strength. When I see others and myself genuinely and confidently share that they are feeling great because of x, y, or z, it motivates me. When I feel grrrreat, physically, I keep rolling with it, exercising, hanging out with the world and loving life. Being strong and healthy is the easiest and most effective way to stay in remission. I don’t like losing momentum. I don’t take any day off from good health, from my blog ItsNotJustLyme.com, or from remembering to be grateful. I don’t like losing momentum.

“The more grateful you are, the more goodies you get.” – Louise Hay

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© Photograph by ColorMeLyme.net

How has Lyme Disease affected your life?

My Lyme disease journey began over 39 years ago at the age of 10, but I spent the next 25 years of my life fighting for an accurate diagnosis.

In the summer of 1977 a bite appeared on my leg, surrounded by a red rash (not a bulls-eye rash), followed by a severe case of the flu: 105 degree fever, delirium, debilitating fatigue, extreme bone and muscle pain, excruciating headache, nausea – all the tale tell signs of Lyme disease.  There was no testing, accurate or otherwise, for Lyme disease in the Midwest, where I grew up as a child.  Treated for a spider bite with a short round of antibiotics, and after a short hospital stay I was sent on my merry way.  My parents and I assumed everything was going to be OK, because the doctor told me I’d be fine.  This could not have been further from the true reality of what was in store for me and my long and winding health journey.

Throughout my remaining school years, my 20’s, and into my early 30’s, I battled a multitude of chronic illnesses.  Collecting a trail of countless specialists, diagnostic testing, misdiagnosis after misdiagnosis, ER visits and hospital stays spanning all across this country.

Despite my sickliness, I fought fiercely to be strong, fit, and an active athlete.  I also worked hard to achieve a successful career, beginning in public accounting and then making my way into the profession of healthcare administration.  But over the years, as my work life and stress accelerated, my body became more and more weary.  The constant bouts of the flu and unexplained viruses began to take over.

In January of 2001, I was struck down by a severe case of the flu once again.  A significant health relapse leaving me bedridden, weighing less than 85lbs, and fearing death.  I was forced to resign the position I had worked purposefully to achieve and valued greatly.  The independent, strong-willed, I am woman hear me roar, fierce and feisty woman had faded.  I was withering away and completely dependent upon my husband and others for every aspect of my life.  No longer able to even manage the simplest of tasks.

Specialist and hospital after specialist and hospital continued.  I was finally diagnosed with Lyme disease in 2002, and later with Babesia, Bartonella, Mycoplasma, MTHFR gene mutation, and a myriad of other chronic conditions.  The decades of misdiagnoses only exacerbated the severity of my illness, allowing these diseases to invade and completely break down my once strong and healthy body.

If only I had been properly diagnosed and treated when my original tick bite occurred in 1977, or anytime prior to my Lyme relapse in 2001.  Perhaps my health journey would have been completely different.  Perhaps I would still be the independent, athletic, active, fire ball of a woman I used to be.

My life has changed tremendously, especially over these past 16 years, due to my battle with Lyme disease, co-infections, and the multitude of chronic illnesses that have consumed my body.   And while I am still battling and fighting fiercely – every day – to find wellness once again, I hope and pray to learn from this trying and challenging journey.  I remain optimistic and lean on my faith, my adoring and caring husband, my family, and my friends, as I continue this fight.

My hope and prayers are for others, especially children, to be spared years – decades – of constant pain and suffering, to be spared a lifetime of chronic illness and all of the debilitating and life altering challenges that can follow.

There is a need, a hope, and desperation for prayers to be answered.   Change is needed.  Accurate testing is needed.   Improved treatment options are needed.   Advanced research is needed.   Healthcare coverage is needed.   Better understanding and treatment for all tick-borne diseases is needed.   The voices of the suffering need to be heard.

With constant effort and emphasis toward awareness, someday, change WILL happen.

What inspires you?

I am in awe of all nature has to offer. I am a wannabe photographer.

I love capturing beautiful sunrises – representing a new day – a new beginning.

“If you must look back, do so forgivingly.
If you must look forward, do so prayerfully.
However, the wisest thing you can do is be present in the present… gratefully.”  ~Maya Angelou

To follow more of this Lyme warrior’s journey, click here.

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

Transcribed from video entry, click here to view. My name is Bonnie and through the grace of God I met this woman, Karen and thank God she’s helping me out. Anyway, I am a property manager, and/or I should say I was a property manager for eight years. In January of 2015 I began to have pain in my shoulder and my neck. I went to a pain management doctor who gave me a shot, who gave me a shot in my shoulder, but the pain didn’t go away.

I have to read this because I can’t remember what to say, that’s how bad I have Lyme Disease. Next I went to a chiropractor who after three weeks, said he couldn’t touch my nerves, they were too sensitive. Then I tried a physical therapist, I went eleven times. He said the swelling was too much, and he saw swelling in my elbows and told me to get checked for Lupus. My pain management then sent me for MRIs of my neck and my back and he gave me pain meds. And he sent me to a neurologist, since then I have seen five different neurologists. And rheumatologist and whatever, but I’ve been on five different pain medications. Right now I’m on Nucynta, the immediate release and the extended release. Which my pain goes right through that. I can’t be on Oxycontin or any of that because it makes me itch too much. I scratch up my whole entire body.

Finally I saw an infectious disease doctor, that thank God he was Lyme literate. He tested me for Lyme disease and sixteen weeks later, I’m still on the Rocephin drip and of course the Nucynta, for pain.

I can’t sleep at night because the pain is too severe. The pain goes from my neck, all the way down my neck, up to behind my ear, to the front of my head. Pains in my elbows, pains in my ribs and my knees and my feet. It’s in my left eye, it’s in my fingers, my wrists. I have pain in my shoulders, I can’t remember what I did five minutes ago. So I don’t know whether this Rocephin will.. well Rocephin is helping because I’m not in a brain fog anymore.

My husband was so afraid that one day I would wake up and not know who he was. Anyway, I want to say thank you Karen, from the bottom of my heart, and I believe in God. I met you Karen and you changed my life. And I met all these people on Facebook, that changed my life. So, thank you Karen, and thank you to all the people on Facebook that I haven’t met and call my friends. God bless you all, bye now.

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

Last summer I worked and travelled in America and half way through I got very sick. I tried to brush it aside, telling myself it was a combination of hangovers, late nights and early mornings, days spent running around after little kids. Anyone would be tired and achy right? Except after a month of working I couldn’t run after the kids anymore, I’d fall asleep with my sunglasses on during swim time, it felt like every conversation was happening through a glass window, in slow motion, it didn’t feel like my skin or my body belonged to me. Deep down I knew something was wrong but I kept pushing through.

One day after work I went on a bike ride. I collapsed and hyperventilated on the side of the road. It made no sense?! I use to go to the gym for a couple hours every day. After the job ended, I travelled with people I’d met there, but I felt like a grandma. My back was in agony, alcohol made me feel terrible (more than usual terrible) and I could barely walk a couple miles without feeling like I needed to vomit and collapse. I wanted to say yes to everything they did but my body was telling me not to.

I had a few days where I just couldn’t move and didn’t know why. When I eventually got back to England and still felt awful, I told myself it was jet lag… yeah the jet lag that still hasn’t ended. Well, the test for Lyme Disease came back positive and here we are. After a month of IV treatment for Lyme I’ve been told I have post-viral ME/CFS. A friend said to me, “but it looked like you had the summer of a life time.” Yeah I met amazing people and I got to live in and travel America, but the majority of my time was spent agonizing over what was wrong with me, thousands of miles away from home. Smiling photos don’t show the half of it • I am what a person with an invisible illness looks like •

© Illustration by Life in Lyme Light.

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

My name is Chloe and I am 14 years old. I have had Severe Chronic Neurological Lyme Disease, along with Ehrlich, Bart, and Babesia for 3 years now. I never got a rash and it started out by severe strep throat like symptoms when I was 11. Bad fatigue, sore throat, headaches, and a high fever of 103 for over a month without the fever breaking. It was the beginning of December when this started and by Christmas I got a level 10 headache and basically as my mom and doctors put it, I was shutting down.

A couple days after that I went almost completely blind. So they sent me to our local hospital where I stayed for 1 week, during this time they tested me for a lot of things and everything was coming back normal. My fever had broken but I still had a level 10 headache, despite the heavy pain killers, and was still almost completely blind. From there they rushed me to Washington DC where they ran every test known to man and everything was coming back okay, they gave me varied tests like spinal taps. At this point I was pretty much a vegetable and have very few memories from this time, but I remember a doctor telling me I was faking and that it was in my head and I needed to get over it. They discharged me and at this point I was still blind and temporarily paralyzed and couldn’t feed myself. But my parents didn’t give up they had heard of Lyme disease since we live on the Eastern Shore of Maryland and we drove several hours away to a LLMD who sent my blood to IGNEX.

While waiting for the blood test to come back I got worse and they had to send me to a Hospital in Florida. Where I spent a week which included painful tests. At the end of my stay I remember the doctor and a Social worker coming and telling my Parents that they needed to speak in private, during which they told my parents that I was faking and that they needed to control me and it was my head. At the end of the conversation he said and also your LLMD called, you tested positive for Rocky Mountain Spotted Fever. My parents just smiled and walked out.

I immediately started treatment and my vision came back and my headache got better. The next winter I was back in the hospital, but it wasn’t as bad. But after that I was only having a couple bad days a month, I mean everyday is a struggle but getting to where you can function is a blessing. Last year was pretty good. This year has been rough I haven’t been in school for 2 months and am starting to get tics which is terrifying. Lyme has now damaged my liver, heart, and thyroid.

I have to say the scariest thing is being blind and paralyzed, fearing that you would be like this for the rest of your life. However, I am starting to feel better and I am going back to school Monday . So YAYYAYYAYAYAY! I would have to say my future inspires me, along with my family and Lyme Friends. It is hard to see a future with Lyme Disease, but I refuse to give up my mind and that is what pushes me.

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

I am 21 years old, and I have been dealing with Lyme for 7 years. Lyme has taken and made my life full of sad feelings and the belief that I was never good enough. I have missed so many things, and let’s not forget the horrible symptoms and pain. I thought that I was lazy and stupid.. Not did I know that I had Lyme. 1 1/5 years ago I got my diagnosis, the happiest and the worst day in my life.

What inspires you?

Much of my inspiration comes from the nature. It is beautiful here in Norway. But I also find inspiration in music and my absolutely amazing boyfriend.

Stand your ground and fight.