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

I just wanted to share an overview of my story for Lyme Awareness May. In May 2002, I was working full time and on the day I celebrated my birthday in a backyard in Ohio, I pulled a black legged deer tick from my arm thinking it was a spider. I had the bulls eye rash but was not aware of Lyme Disease at the time and did not seek treatment. Today I am not working and trying to maintain on SSI. I still can’t get a positive diagnosis from doctors or accurate testing and on a limited income I’m left to suffer with Fibromyalgia, Chronic Fatigue Syndrome and a host of other illnesses and surgeries…I wouldn’t wish this on my worst enemy. Just wanted to share for awareness.

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

Every moment of my life is saturated in it. There is not even the smallest measure in time when I can steal away from it. My body is smothered in pain and my mind and soul ravaged by heartbreak. I can not even remember what it feels like to not be in pain. Now as I think about it and scan my body I can not find a single space inside me that is not in some form of agony. Not one single breath comes and goes easily. Everything I see, touch, taste, smell, feel, and think are first filtered through this crude sponge we call Lyme Disease. Too weak to lift my own body and too stimulated to fall asleep.

I just turned 29 and as I look back I realize that the past nine years of my life have really just passed me by. The whole decade of my twenties has been stolen away from me. The years when you are vibrant and adventurous, the years you spend going out into the world and discovering who you are and making your dreams a reality, or even figuring out what your dreams are. Don’t misunderstand me I did figure my dreams out but most of them have been shattered or smothered out of me. I did have to find new ones, they are far less exciting and I did not build them out in the world surrounded by my peers. I did it at home, one lonely hour after another.

I had always struggled with my health ever since I was born. I had constant asthma, infections, allergies, daily headaches, frequent migraines, digestive issues, constant stomach joint and muscle pain, poor blood sugar regulation, poor temperature regulation, what appeared to be hormonal issues and so much more. It was even once thought quite seriously that I had leukemia, following serous autoimmune type rash that covered most of my body and lasted well over the entire summer. I visited the doctor many times and went through test after test but when there was no obvious explanation they always just decided I was fine I told me to go home. So I naturally I started to tell myself that if it was all normal then I was obviously just being a cry baby and I needed to get over it. Thinking that was just life and not having a painless baseline to compare what I was feeling, I normalized my pains and just compensated for anything out of the ordinary.

Until I was suddenly blindsided when I was barely twenty years old. I had only one more semester to go before I graduated the cabinetmakers course at Georgian College. I was very fit and active, driven and ambitious with no idea what was really coming. It all started with a series of concussions from horseback riding that never seemed to heal the way they should when after some gains my symptoms again started to regress, thus I began my descent into my own personal Hell. My teachers found me sleeping on the floor in corners of the shop, and my friends noticed my confusion and inability to form full sentences sometimes. Brushing it off and telling them I was just fine I pushed myself to graduate. I moved home quickly and finally let myself unravel, when it was over I crashed so hard I was forced to admit to my family how much I had been suffering. For a few years I chased the diagnosis of Post concussion syndrome looking for help. Nothing was really helping and the whole time we all knew there was something else going on but it was so hard to put a finger on. Lyme Disease and co infections in my body all along were, for lack of a better term ‘woken up’ by the trauma of the head injury. The bacteria was taking full advantage of the damage my body and brain had sustained, using it as a way to really dig their feet in.

I was totally unaware, frustrated with my lack of progress I decided I would have to live with it and move on. I held on and tried to turn down a different path although it hurt me to leave behind my last dream. I turned to something that seemed noble. Over three years I worked really hard part time to get my Educational Assistant Diploma. Two classes a week were extremely difficult for my brain and I had to rely on others to drive me to class twice a week.

During my second year there I suddenly developed severe tremors and muscle spasms all over my whole body which would eventually become what is now a rare and severe movement disorder. Once they came they would not leave and stayed for weeks on end. Not only did I have to fight against the pain it brought I had to fight doctors to convince them I deserved to be tested and treated. It took years and finding someone to listen then, I was finally diagnosed with Lyme Disease. I started needing a cane for support as I was falling all the time. My leg muscle became very weak, and my joints would not hold. The worst part was my body would not respond to treatment. The doctors that would listen to me had no idea what to do with me.

During my last year in the E.A. Program I continued to decline and was only able to get out of bed for four hours at a time to go to class, where I felt like I was barely there. I spent the other 20 hours in bed. spasming uncontrollably for most of that time. Often the spasms would take over my chest muscles and would squeeze me so tight I would spend hours gasping for air. Soon after graduating I was in a wheelchair. At this time I was getting up to six injections a day into my legs to control my movements as best as I could. My legs became purple and swollen, the nerves began to become damaged and give me pains so bad I can’t think about that time in my life without feeling the tears well up inside me. It was up to my family to give them to me and I tried as hard as I could to put on a brave face and not to cry out because I could see their eyes welling up with tears every time they had to do it. I remember the worst part about all of this was watching my loved ones. They had to see my body give get eaten away in front of them and there was nothing they would do. This was when I started needing 24 hour supervision for my safety against my symptoms that I still have to this day.

It would take forever to explain all the important details from birth until now that just made me the perfect host for Lyme and many other infections. Instead I want to get to the heart of it. I feel as though everything I ever worked for has been taken away. All the things I used to love more then air itself are gone. Part of me feels like I woke up one day and it is was all suddenly a world away. Just out of my reach, and the closer I would try to move to it, the further it would get. I honestly try not to think about my horses too much because when I do my heart just aches so hard and longs to be close to them again.

I have watched people break their own hearts over me while they sit up with me night after night, and day after day. Holding me down to keep me safe and watching me in agony as spasms in my body dislocates my own bones over and over again, tearing muscle, and bursting blood vessels. Or watching me vomit up everything but my shoes as I sweat through my clothes and cry that I am so cold it hurts. Or as I scream and cry like a child because simple tasks confuse me so much I can not tolerate the frustration, because I forget everything I did today or what I was talking about mid sentence. At times my body is rendered paralyzed and even if I am screaming on the inside no words can be forced out of my mouth. Any bit of sensory stimulation (touch, taste, smell or sound) feels as though it has been amplified by ten million. So the world is stuck walking on eggshells around me. I feel like I am in a glass box and often find myself avoided out of love and worry.

My movement/seizure disorder is triggered by literally everything and I have to plan my entire life around it. No doctor can name it and it makes most of the poor doctors so afraid of admitting they have no answers that they have gone so far as to tell me I am just faking it. But then it makes all the good doctors too afraid to try to help me for fear of making me worse. So here I am still stuck in the middle, and just doing the best I can with what I have got.

Like so many others with Lyme disease I am left to fend for myself. With tremendous brain fog I have to do my own research and figure out what I need and how to get it. Then each time I find something that may help I have to just try it and see what happens. Because not everything works for everyone and it is all trial by fire. Then if the treatment therapy is for you, you have to go through what they call a Herx or healing crisis. Which means you are making things inside you very angry and you will suffer the consequences. Each one of these things only makes up a small part of what is going on inside you so after all that you have to go right back to the books to try to figure out what else your body needs.

I have over one hundred symptoms, I do not have them all everyday but each day I can have any combination of as many as I can take of them. I have to force myself to live some dim reflection of some kind of life, for fear of feeling any less purposeless or more of a burden then I do now already, and with no promise of ever really feeling any better. The truth is I believe that I will get better some day, because for my own sake I have to trust that it will happen. Unfortunately though I will always have Lyme Disease on some level. With this disease you don’t really get ‘cured’ you can go into remission but it can always come back. So you have to live your life doing constant maintenance to keep it at bay. So although not everyone will be able to see it, I will always be fighting.

I have been blessed by the good Lord for my passion for art. I am very thankful for the time I can spend lost in my drawings. So on the days that the pain is too much, emotions are out of control, I can not go outside, when I can hardly move, at least I can draw. Even when it hurts, I always draw. It is a form of therapy that transports me to a weightless place. It helps me find purpose on my own. A new dream. It gives me strength and courage, bringing a little light into my life.

Lyme Disease and this journey I have been on has given me great opportunities to gain perspective. I guess the real question is, what will I do with it?

“Strength, does not come from physical capacity. It comes from an indomitable will.” -Mahatma Gandhi

Brianna Kerr-Baker
Follow my blog on Facebook: @lifeinthelymelight and @briannakerrbakerart
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How has Lyme affected your life? What inspires you?

Lyme is hard, even harder in a Podunk town no one knows.. I found a tick embedded in me June of 2016, the first time in my entire life I had ever been bitten.. I’ve lived my life outdoors, I’m from NEPA and that’s what we do. I mean, I LITERALLY live in the mountains.. hunted, fished, camped, hiked, swam, gardened, quad rides, snow boarded, horseback riding, everything you can think of, I did! Now I feel like I can’t even muster up the energy to take a shower; much less go to the bank. I went untreated for almost an entire year! My family, friends, bf, they all sort of forgot it was happening. I didn’t talk about it much, and when I did they pushed it aside because two doctors told me I didn’t have it.. when I was bit, I had every sign and symptom of Lyme except a bull’s-eye. I started the doxy, and bam! There it was! Huge, and in your face. I knew for a year, I had not had any other changes in my life for me to feel so horrible. I would be told to go to a Doctor if I felt so bad, and to do something about it. I made an appointment, but with Lyme being such an epidemic in NEPA, the specialist has a wait list of 3 months for people trying to get in on their own. I’d tell people I have an appointment and their response was that I made one with “a Lyme disease doctor..” like I was crazy. They didn’t get it. I itch like a junkie from one of the three other diseases that came along with this sh*t and I can’t even itch it without hurting! I didn’t want friends to know, for fear of more leery attitudes towards my thoughts so I acted fine. My act only made things worse, made people think even more that I wasn’t really sick. Lyme is hard. I am on seven different medications and I now have to give myself B12 shots daily.. Just because you cannot see it, does not mean it is not there.

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

The story of my Lyme Journey:

Hello fellow Lyme Warriors and those who love and support us..

My name is Danielle. I’m a 30 year old Paramedic, Daughter, sister, wife and now a Lyme Warrior.

My journey with Lyme began long before my diagnosis in May of 2018… 9 years before, infact. I’ll admit I was a victim to the naive idea that Lyme could only be contracted in the northern states, that you’d see a large tick on you or see the Bullseye rash.. But for me this was not the case.

I was born and raised in Texas and have only traveled between here and Louisiana to visit family, hunting and fishing with my Dad. Lyme Disease is actually something that is not ever mentioned in these parts because many believe it doesn’t exist here. I am among the unfortunates who did not know they were bitten, so timely treatment was not an option. I never developed a Bullseye rash, no sudden onset of flu-like symptoms, no accidental finding of the tick. My LLMD has decided that the timeline that I was possibly infected was when the symptoms began, at the age of only 21..

Since I was in the service of others as a practicing Paramedic in Emergency Medicine on the Ambulance, Fatigue was never a stranger due to the strenuous 48-72hr shifts with little to no sleep.. The horrors that we witnessed on a daily basis that true nightmares are made of was my explanation of the anxiety, depression that I felt and ADHD was another Doctor’s explanation for my inability to concentrate, retain information and short term memory loss. The back and joint pain was chalked up to all the heavy lifting, and moving all the bags and equipment while carrying patients three times my size down stairs and into my ambulance. Little did I know that these were the early symptoms of the Lyme Disease beginning to dig its claws into me.

As the psychiatric presentation tore away at me with anxiety attacks and deepening depression, the desire for isolation and crowd avoidance, I began to experience several new symptoms that were also disregarded by local Specialists. My friends and I had began to regard to myself as the “Medical Unicorn” because no one was ever able to explain what was happening to me and why.

At the age of 23, I had my first Colonoscopy that came back inconclusive and SITZ marker tests that showed the illuminated markers still in my intestinal tract a week later due to “Delayed Gastric Transit” or as its otherwise known as, Chronic Constipation. I would not be able to go to the restroom for up to two weeks without the assistance of laxatives. When you have specialists shrug their shoulders and expect you to accept that as an explanation and an answer for your pain and condition, it’s very disheartening… I began to feel like I was crazy; that it was quite possible that I was imagining all of these things because after all, every Doctor i sought answers from kept telling me nothing was wrong?

At 25, the cardiac symptoms began… Palpitations, runs of SVT…

As a Paramedic, I had the luxury of having a cardiac monitor at my disposal to catch the event of a dangerously high and erratic heart rate on an EKG and also knowing how to “convert” out of the rhythm by stimulating the vagus nerve by bearing down. I was on shift and was woken up due to severe chest pressure and the pounding of my heart beating at a rate of 170.. Needless to say I was terrified.

So, I caught the event on the monitor just how the Cardiologist expected us to with a patient and made an appointment with the best Cardiologist in the area. I had been in the operating room with this man several times as he cut open patients that I had brought to him having active cardiac events and watched him save countless lives..

So you can imagine the fear, humiliation and confusion that flooded me when he looked at my EKG, and asked me “Who gave you permission to take this EKG?!?”

When I explained to him that I was a Paramedic, that I captured the event as it was happening just as he had always requested of other patients so he could see what was happening.. He responded with “There’s nothing I can do for you. You’ve just wasted my time. Don’t come back..” And tossed my precious proof that I wasn’t crazy carelessly across the desk as he walked out.

For the next four years I would go on to experience multiple events like this.. Each one more terrifying than the last.

I finally found another Cardiologist who took me seriously, treating the symptoms but again I was met with the same confused look and statement, “We can attempt to manage your symptoms but we don’t know what’s causing your condition”.

I had worn several 30 day cardiac monitors, they wanted me to have an ablation for a condition that they diagnosed as “AVRT” but what was later confirmed to be Lyme Carditis with an incomplete right bundle branch block after my Lyme Diagnosis..

My body steadily began failing me more and more.. What took me off of the ambulance for a time was me fracturing two metatarsals in my left foot by accidentally dropping a gas pump handle on my foot. The Doctors were shocked at how fragile my bones were and what I didn’t know at the time was Lyme robbed my body of almost all of my Vitamin D, as well as multiple vital hormones.

After I had healed from the fracture 6 months later, I found a different job working in the refineries as a Paramedic first responder because my body was slowing down and I could no longer keep up with my crews and no one could explain why. I was slowly being robbed of my dreams; my passion. What I felt was my purpose in life.

One day a year later at work while walking, my right knee popped. It felt like a rubber band had snapped in the inside of my knee and a warm sensation immediately spread, followed by significant inflammation causing an inability to bend my knee or bare weight on my leg for several weeks. What I had experienced was torn meniscus due to the lyme eating away at my knee. My left knee was soon to follow. To make a long story short, it rapidly progressed to high grade chondromalacia patella with bone exposure, leading me to require bilateral knee replacements before I’m 40.

Fast forward to 2018..

I had been seen by over 9 Physicians including specialists and still no one could tell me what was going on… I finally met a NP who specializes in hormone replacement therapy. I made an appointment and had complained of chronic fatigue, relentless insomnia, anxiety, depression, daily headaches, neck, back, joint pain, muscle spasms in my neck and shoulders, swollen glands in my throat, low grade fevers, unexplainable weight gain, hair loss, mood swings, ADHD symptoms and so many other odd symptoms.

He performed a wide panel lab test to rule out anything and everything including autoimmune and he found that my hormone levels were critically low (testosterone and progesterone), my Vitamin D significantly low and also an abnormal lab result of a positive ANA level with a 1:180 titer which is normally indicative of Lupus… He referred me out to a Rheumatoid Doctor but the wait time was 3 months so with the news that they were “99% sure I had Lupus”, time was of the essence. I wasn’t willing to wait…

Thanks to my Mom, I was blessed to be referred a doctor who specializes in the strange and unusual 2.5 hours away from my house who happened to specialize in infectious disease and also is an LLMD. My initial consultation was very informative and so many tests were ran. She was the first person with a Medical Degree aside from the first NP to listen to me, and truly appreciate the significance of the symptoms and search for answers.

I was diagnosed with Raynaud’s Phenomenon, Fibromyalgia and she ran a battery of tests on me. She told me in great confidence that she did not believe it was Lupus but Lyme disease even though I had told her that I did not ever remember being bitten by a tick but I do go hunting with my Dad and have ever since I was a little girl.

When I received the call a week later with the diagnosis, I was relieved because I was so naive. All I could think was i finally had a name for what had been plaguing me for almost a decade!! I called my Husband, my parents and Mawmaw with the “amazing news” that I wasn’t crazy and that I had a name for the problem I’d been struggling with..

I thought Lyme was a quick fix..

Simple and easy..

A round of antibiotics for 30 days and I’d be good as new..

We celebrated the idea that I’d be healed soon of my troubles, pains and symptoms and to finally know what “normal” would feel like, but I could not have been more wrong. What was given a name was truly a thief that I would learn had been busy stealing pieces of me as Doctors turned the other way… I was about embark on a journey to my own personal Hell on earth…

To experience the worst kinds of pain and be forced to try to lead a normal life at pain levels most never experience in their entire existence. To rely on medications just to get out of bed to make it to the restroom and back and give me the false illusion of a quality of life that doesn’t even hold a candle to the one I once had. And although no one prepared me for this, I truly don’t believe that anyone can…

My LLMD told me “You must get worse before you get better“, and I was silly enough to think, “Can it truly get much worse than this?” And “How bad can it be? You don’t know what I’ve dealt with for the last 9 years..”

But I would soon find out I was so wrong.

Once the treatments began, I thought I was dying.

I still feel like I am from time to time when I have a flare in symptoms… No one tells you that you will experience nausea at the slightest smell of food even when you’re starving… That you will become sick to your stomach and want to vomit after eating. The carb and sugar cravings that come from the Lyme wanting to recharge itself… And as soon as you give into the cravings, you are writhing in pain because you’ve allowed the Lyme to feed and get stronger.

The excruciating headaches from the muscle spasms in my neck and shoulders because my spine is shifting from the muscle atrophy that has caused the development of scoliosis… I was also never properly informed about detox methods so all the bacteria that was dying off was trapped in my body with no way to escape. I was stuck in a constant Herxheimer reaction… It causes an exacerbation of all of your symptoms tenfold.

I thank God for another Lymie who reached out and even though she never had met me in person, she bestowed so much kindness and compassion just to see me heal and have courage, and because of her she did help me..

I’ve experienced so many life altering changes:

My Husband and I had to move in with my brother in law because I was no longer able to climb the stairs at the house we were renting..

I had to take medical leave from my wonderful job that I put my heart into since Emergency Medicine was no longer an option for me.

Lyme has truly robbed me of my dreams, my memories with the short term memory loss, my career, my ability to heal others and “save lives” because now trying to save mine is a full time job..

Lyme Disease comes as a thief in the night and steals the most precious of things.

Once where I used to be able to rattle off treatment protocols and drug calculations to my EMT students is now replaced with empty shelves in my mind, covered in dust where there once sat an abundance of books, full of knowledge that I could pull from and recite at will, word for word.

Lyme has made me a prisoner in my own body..

I’m 30 years old and bed bound on my bad days.

On my good days, I’m able to “enjoy” an hour of activities before the pain overcomes me. Having Lyme will humble you in ways you never knew possible… Asking for help and relying heavily on your spouse and family, using a wheelchair if there is a lot of walking just so you can be a part of the festivities… Having to have someone shop for my groceries because the Chemo makes me too weak to even make it through a grocery store. It will make you a new, compassionate and grateful creature.

If you thought you cherished the little things, prepare to become even deeper than that… You will cherish the days when you don’t have to convince yourself for 3 hours to get up and shower because today you have enough spoons… You will cherish the days when you have a good night’s sleep and didn’t stay up all night because of the pain.

You will cherish the kindness of random strangers, who when they see you struggling, they stop and ask to pray with you instead of just walk past and stare… You will be grateful for the unconditional love of those who stick around, even though you’re not a fraction of the person you were but they love you regardless.

I’m grateful for my Husband, who has lived out his vows to me a million times over; who chose to marry me even when he knew I was very sick and may not get better.. He chose to take on this battle with me, fighting by my side every step of the way and refuses to let me give up.

You will be grateful for the family who understands, loves, supports and lifts you up daily. To remind you that your battle is going to bring Glory to God and has not been fought in vain.

You will be grateful for those who take the time to listen even though they don’t understand what you’re going through- these people are beautiful.

You will be grateful for those who believe in you, believe in your fight and refuse to let you give up or feel sorry for yourself. You will be grateful that through word of mouth or just a like and share on social media, others give you and so many others like you a voice..

To give you an insight of a day in the life of a Lymie:

When I wake, I feel like my bones are breaking and have the worst “toothache” like sensation in my bones. The lyme arthritis in my neck, back and knees caused limited movement, muscle spasms, and changes in my spinal structure as well as integrity. I’m helpless against full moons and weather changes, as those also intensify my symptoms. I went from saving lives to fighting for my own life.. But on a positive note, I will say the anxiety, depression, and also cardiac symptoms have resolved with treatment.

My doctor was able to confirm my Lyme Diagnosis with the Western Blot as well as CD57 level. I can’t stress enough the significance of the CD57. It checks to see how impacted your immune system is, and if you have Lyme that may be lying dormant, this is how they will confirm it. It is possible to have a negative Western Blot but still have active Lyme during treatment phases due to the Lyme bacteria hiding from the immune system. With my CD57 Level, I was diagnosed with Late stage lyme disease with a level of 22. My initial testing only showed one band but 6 months into treatment, the second one showed up that had been hiding. Trust the CD57. With recent treatment of a pill form Lyme Chemo, my numbers have jumped to 59 after almost a year of different treatments that my body wasn’t responding to, finally this one is working.. Trust the process. If you have a doctor who’s unwilling to utilize the CD57 level, find yourself a new Doctor. It may save your life.

If there is something that I may say to other Lymies:

1. DETOX is the most important part of your treatment. I have found that Alka-seltzer Gold that you can purchase From Amazon is a God send. Luke warm Epsom salt baths help to pull the toxins from your skin. Anything hotter will cause a herx reaction and cause significant complications such as shortness of breath, elevated heart rate, migraines, and severe weakness… Dry saunas help you detox as well. Without the humidity, I find that it helps reduce my symptoms. Regular colon cleansing removes toxins that may be hanging around… I can’t stress enough how important this is to your healing and improvement. Drink plenty of water through all of these methods to flush your kidneys and liver. If not, you will stay in a constant HERX reaction.
2. Remember you’re not alone. Although I’m bed bound 80% of the time, the Lyme communities that have opened their arms to me have made me feel understood and not alone. You’re not alone. I promise. Join them. There are beautiful people there.
3. Self care is the utmost priority. Don’t ever feel guilty for taking a day or even a week to rest. You are healing.. I will personally attest to that I go through guilt from time to time because I have went from being the caretaker to the one asking for help and being cared for. There is no shame in this. Dedicate your time to healing. You deserve it.
4. Never ever under anything circumstance give up or give in. I know the treatments hurt. I know that you get tired of taking countless pills just to survive. I know the pain pulls us down like tidal waves but I promise there is hope. We must cling to that and never let go.

For those who care for us; friends, family, etc.

1. Please be patient with us. We are doing the best that we can. We are not lazy; we are healing. We feel guilty for being prisoners in our own body so please know that on our bad days, that we are doing everything we can to survive this storm. I know you think there is nothing you can do, but the sweetest and most uplifting thing you can do is to love us through this. Just be there for us. Know that we are still in this body and we will return one day. That we love you despite everything and are grateful for you never giving up on us.
2. Advocate for us at Doctor’s appointments, against those who are skeptical of our conditions because we force smiles through our pain to give the illusion of a normal life… Be our voice when we need it the most. Help us spread awareness. With awareness comes a cure..
3. Thank you for the love, support, prayers and friendship.. Because of you, we are Lyme Warriors.

Thank you for taking time to read my story. I pray each of you that are struggling with a disease/illness; that you find remission soon. Thank you for being there for me and know I’m here for you. Remember, you are not alone and you are loved. Keep an active prayer life and don’t lose faith. I believe that we will be healed in His time..

“Let go and let God.”

Danielle Clary, “Medic Dee” The Lyme Warrior. Follow her brand new blog journey by clicking here.

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

I hope that one day my life will not be centered around being sick. I am 25 years old, and that is all that I have ever known. My name is Michaela, and I have chronic Lyme disease. Ever since I can remember, I have known that something was wrong with me. I can go back to being in elementary school, and feeling like I was standing on the outside of life, and all that was good in it, looking in and wanting so desperately to be a part of it. To this day I still feel like that life, that wholeness and joy, are simply right out of my grasp.

As a child, I was always sad. I started to write dark, tragic poetry when I was ten years old, because it was the only way to express how I felt on the inside. I never had any friends, because no one wants to be around sad people, especially not when you’re a kid. I began having mental health issues around that same time, developing obsessive compulsive tendencies and paranoia. My parents didn’t know what was causing my behavior, so nothing was done to address it.

As I got older, and hit puberty, I started to develop more and more unexplained symptoms. When I entered high school, I suddenly gained a bunch of weight, and my face became super red, round, and swollen, and my eyes got squinty and I always looked like I had just woken up. Of course, as a teenage girl, and especially one that had grown up in the dance world with low self-esteem, this was an absolute nightmare. In high school, I suddenly weighed about 40 pounds more than all of my friends, and I had no idea why. I had never been an overeater, and I was always extremely active, dancing most days of the week, and loving to be outside.

Naturally, feeling devastated and hating my looks, I developed an eating disorder. My body would not respond to anything that I was doing, and I began to attempt “fasts” and experimented with purging. Over the years, my body continued to fight me at every attempt to lose weight and feel good about myself. I became obsessed with food and exercise to the point that I never would take a day off of running, and truly thought that if I didn’t run, I couldn’t eat. To this day, I still struggle with this. I have tried every diet and exercise routine known to man, and have become more and more obsessed with looks and body size, to the point of it inhibiting my ability to function at work, school, etc.

I also have experienced extreme fatigue, terrible joint pain, headaches, insomnia, water retention, hot flashes, horrible PMS, allergies, and panic attacks. I often feel like I am being possessed by demons that want to destroy me, and make me destroy myself. This is just the tip of the ice berg, and it is very difficult to put into words how it feels to wake up every morning on the verge of tears, wishing you would die, because life was nothing but pain and hopelessness.

I have dealt with extreme depression and anxiety for my whole life, and have felt like I was incapable of being a human, because I felt so alone. I went to doctor after doctor for years, trying to understand what was causing my physical, mental, and emotional symptoms, that made it impossible for me to have a normal life.

Every doctor I went to told me nothing was wrong with me, and that it was in my head. I was prescribed anti-depressants so many times that I lost count, all the while knowing that I didn’t just have “clinical depression”. I KNEW there was more. I KNEW that the way that my body had been malfunctioning wasn’t in my head.

I experienced horrific varying symptoms such as the ones I’ve mentioned along with others through the years of college, making me feel entirely alone and like I would never belong anywhere, and preventing me from making friends, dating, or performing up to my potential in any aspect of life.

About two years ago, things got way worse. After many years of fluctuating symptoms, suddenly I always felt horrible. Suddenly my body progressively started to swell up. It started with my face, and then moved to the rest of my body. It got so bad that I couldn’t fit into any of my clothes, and didn’t recognize myself at all. I became increasingly sensitive to all foods and substances, I lost all of my stamina to exercise, and had no energy or desire to even be around my family. I would go to school or work because I “had to”, and then I would come home and lay in bed and cry. Every single day. I had lost all hope or will to live. I experienced constant thoughts of suicide, and saw no light in life or end to the symptoms.

Again, I KNEW something was wrong. I sobbed and wailed and tried to explain to everyone in my life, including the doctors and specialists I went to, all with no one believing me. Even my family, who have always been my biggest supporters and closest people in my life, didn’t believe me. I became a Google-freak, desperately trying to figure out what could possibly be making me so sick. I went down hundreds of rabbit holes of self-diagnosis, including Hypothyroidism, Cushing’s Syndrome, Cancer, Brain tumors, etc.

I still had hopes and aspirations for what I wanted my life to be, but thought I would never be able to have any of those things because of being sick, and not even knowing why.

I felt isolated in every context of the word, and didn’t know anything different.

Last July, at my lowest and most desperate point, my mom found a doctor that specialized in mold sickness, which was what my most recent self-diagnosis was at the time, due to growing up sleeping in a moldy basement room. When I went to this naturopathic specialist, I was so beaten and broken down that all I could do was cry when she asked why I had come in. My mom started to explain to her what she could, and then I filled in the gaps to the best of my ability.

She acknowledged that I did have a mold-exposure issue, but after hearing my story and asking me a few diagnostic questions, she instructed me to go get a CD-57 blood test, to see if I had Lyme Disease. She stated that 80% of patients that came to her desperate for answers had Lyme unknowingly. At this point in time, I had no idea what Lyme even was, let alone the devastation it can create in one’s life.

She started me on some supplements after completing an extensive urine test, indicating that I had no mitochondrial function whatsoever. And then, two weeks later, I found out that I did have Lyme, and that my blood test number was so low, that it indicated that I had had Lyme for at least ten years.

She started me on some intense herbal therapy, and within a month or so, I started to notice a difference. The swelling started to go down. I started to fit back into some of my clothes, and felt like I could breathe again. I started to smile again, and wanted to be around people a little bit more. I finally had a little bit of hope.

Since then, I have had constant ups and downs throughout my treatment, and have had days that have felt so low that I fall back into that place I was before getting diagnosed. But I have to continuously remind myself that healing is not linear. And keep reminding myself how huge it is that I have a diagnosis finally, and AM treating it.

I have done a tremendous amount of research about Lyme since being diagnosed, and understand my life now in ways that I never thought possible. I now know that every case is different, and different treatments work for different people. I also know that it can take a long time to get well, especially when you’ve been sick for as long as I have. I have learned that the longer you have Lyme, the more complex and progressed it becomes. I know that I have several co-infections, and that every single organ and system in my body and brain has been compromised due to the late-stage of Lyme that I have been in.

I AM healing, and as hard as getting through one day often can be, I am extremely grateful that I know why, and that I am in the process of recovery, after a lifetime of misery with no answers. I know now how many undiagnosed cases of Lyme there are, and it absolutely sickens me that there is such little knowledge or awareness of this life-destroying illness.

Although it is and has been an extremely painful, difficult road for me, it inspires me to fight for this cause in any way that I can. I have never been so passionate about anything, and I will do whatever it takes to help spread awareness about Lyme Disease.

Life gave me Lyme instead of lemons

How has Lyme Disease affected your life?

There are so many ways Lyme has effected my life. Lyme effects every bit of my everyday. The pain, the fatigue, the depression, anxiety, memory loss, lack of energy, lack of sleep, the supplements the STRUGGLE everything is at least 10x harder than they use to be. Not one part of my life is untouched by my Lyme. I’m a high school student and each day is nearly unbearable. My goal when I drag myself out of bed is to just make it though the day and come home to rest and do it all over the next day. The frustration of not being able to remember anything is probably one of the hardest things I have to deal with. Socializing is Nearly impossible and being able to retain information for my schooling is difficult. Many times I been stared at funny because I repeat myself or I look like an idiot. But it’s okay. I’ve had Lyme symptoms for nearly 2 years and but have just recently found out I had it 3 months ago. And I’m incredibly blessed to have had Lyme for such a short period of time before I found I had it. I read some of these stories and realize I don’t got it too bad.  I’m just beginning my journey with treating my Lyme. My treatment date has been postponed many times because my body is too weak to even receive treatment but hopefully on the 15th that will change and I can get to treating my Lyme.  I have an amazing mom (who also has Lyme) and team of doctors to help my though this. Very grateful for the community of lymies and their support. Just take one day at a time and don’t stress. You can only do your best and some days that may look like laying around all day in your Snuggie. P.S. let the C.D.C. know I got my Lyme in Arkansas;)

What inspires you?

“You’ll get better, maybe not today or tomorrow or next week but you will. So hang in there hun.”

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

I’ve had many struggles in life but I overcame them all. I fought hard to make something of my life. I was finally where I wanted to be. A successful career in banking as an Asst. Vice President and a family who I adore and love with all my heart. I didn’t take much for granted knowing how hard life can be. I knew how blessed I truly was. But looking back now, I did take one thing for granted. My health. I watched my son battle cancer at age 9 and after that realized the gift of health for my children. But myself? I’ve always been very healthy, ate right, worked out, lots of energy. I kept our family and home running with the help of my husband of course. I never thought for second what happens if I get sick?

In September 2014 after my back went out like it often did, I started having issues with my legs. It went on for a month. Nerve pain, tingling sensation, left foot drop, zapping shock sensations, etc. Then joint and muscle pain began to set in. Seeing many doctors who had no clue. It grew worse until one day at work I got up to walk and my feet were stuck to the floor as if cemented down. I was rushed to the local hospital who then sent me to San Antonio to a larger hospital. After a week of testing, they had no idea what was wrong. I’ll never forget those next words. ” you may never walk again”. I was in a wheelchair off and on(mostly on) for 6 months. Doctor after doctor. The Mayo Clinic diagnosed me with functional gait disorder brought on my severe nerve pain. Again saying I may never walk again. I refused to accept that. I was determined to get my life back. I continued to work at my career and fought more than ever to get my legs back. I eventually got out of the wheelchair. However, I still had episodes when I’d lose my legs and be back in it for a few days or so. It started spreading to affect my arms as well. Nevertheless, I was managing it the best I could and not letting it ruin my life. “I’ve got this “, or so I thought.

Three years later. I woke up on the floor hearing cops pounding at my door getting ready to knock it in. I finally get to the door only to pass out again. My place was flooded with the police and ambulance workers. I had gone to lunch from work and never returned. That was the start of my heart becoming affected. I was passing out 3 or 4 times a day. Had to go on temporary disability. My heart issues began flaring what other symptoms I had. I’d wake up many times on the floor of my home, too weak to move. I’d lay there for hours until someone found me. I’ve passed out in the bathtub found nearly submerged under water and pulled out. I’ve fallen down stairs, passed out in the yard, had many bumps and bruises and have scared friends or family who found me unconscious. Yet my condition grew worse. I began waking up many times unable to move my legs or arms and unable to speak. I was trapped in my body with no way to communicate. Just tears of fear rolled down my cheeks. My body began shaking terribly(seizure like episodes), waking up during the night many times drenched in sweat, my heart racing so fast and a feeling I can’t describe in my body. I felt as if I were dying. I’d also wake up a lot because I quit breathing. Insomnia sets in, trouble breathing, severe nausea, flu like symptoms. The long list continues but far too much to list.

I ended up losing my career of 18 years due to becoming extremely ill. A career I worked so hard at. I knew I was dying. I could feel it. Doctors had no clue what was wrong. I finally came across a YouTube video of a singer with lyme. I knew immediately that’s what I had. So I traveled to another state where I was tested by a lyme literate doctor. Sure enough I tested positive with chronic lyme disease, co infections, molds, heavy metals and other things. I had a port put in and quickly began treatment. 5 days a week, 4 to 7 hours a day of ivs dripping into my body. Two months and over $50,000.00 out of pocket spent, I had to quit treatment. I only have one kidney and it was too hard on my body. My doctor said I fall into that small category where treatment wont work. He told me without treatment, I will die.

I’ve been in bed more days than not for about a year. Everyday is a fight. I push through the pain. The pain. Let’s talk about the pain. Have you ever stepped into an ice cold river or lake? You remember how bad it hurts your feet and you quickly jump out? That is exactly how my nerve pain feels. It started from my knees down. Then my entire legs, my arms and now my back. Only I can’t jump out. I’m trapped in this body that hurts so bad at times it shakes uncontrollably. All my joints hurts, my muscles hurt and my nerves hurt. It triggers severe anxiety because there is no escaping the pain. Nowhere to run, no way to make it stop. During those bouts of severe pain, I cry a lot. Begging God to make it stop. To please just take me and spare me anymore pain.

My lyme is now in my joints, spine, heart, brain and nervous system(that I know of). I have what they call neurological lyme disease. There are so many symptoms that plague your body with this disease. It attacks your brain leaving your memory deteriorating. I sometimes feel like a child because my brain doesn’t work like it should. You no longer feel anything about certain things(it just shuts down that part of your brain), you do and say things that are not you, emotions are everywhere and the lyme rage is scary in itself. So many of us don’t even know who we are anymore. You feel like you have literally been possessed by a demon . Your body is under attack, your brain is inflamed and under attack. You hate this person lyme has made you, yet, you have no control over it. You’re so sick, friends disappear due to having their own lives, doctors can’t help, some won’t help, insurance won’t cover treatment. We’re trapped in this body that is now a torture chamber. We’re dying a slow, painful and agonizing death and we’re dying alone with no help. Someone once said, imagine being told you have stage 4 cancer. Then being told we really can’t help you or there is some doctors who can try to help you but insurance won’t cover it. It will cost you thousands of dollars with no guarantee. That is what lyme patients outlook is like. Many families lose their homes because they are spending all their money to stay alive. Our lives are being held hostage by those who could change our helplessness(CDC). It would be as simple as recognizing lyme disease as the bonafide and destructive, even deadly disease that it is.

Many lyme sufferers commit suicide because there isn’t much hope for us right now. I’d be lying if I didn’t say on those days my pain is so horrific and I can’t escape it, my body is so sick and so tired that my mind hasn’t gone there. I fight everyday to stay alive. I fight every day to be as normal as I can for everyone else. Many days I fake it to the best I can. Some days I do great. Put on a little makeup, smile, snap a picture, try to participate in life. Some days I have nothing in me to try. I hurt too bad, too weak, just too sick. I push myself to attend things when I can. But not without a cost. It can knock me down and take me days to weeks to recover.

This disease stole my career, my friends, it took my husband’s wife and my children’s mother, its caused havoc on our finances and put a lot of stress on my family. Our home struggles to stay afloat. I went from a healthy, active and happy wife/mom, a successful career woman to a very sick woman that I don’t even recognize any longer. A woman who is using what strength I have just to stay alive.

Please help me and so many like me get help by bringing awareness to this horrific disease. Help us to not have to fight this alone. #lymeawareness

I walk by faith not by sight

                          2 Corinthians 5:7

How has Lyme Disease affected your life?

Lyme has affected absolutely every part of my life. I had to give up my dream of living in London to return home to focus on treatment, and go on medical leave from my first “real” full-time job. I was no longer able to do the things that I loved the most, such as traveling, hiking, paddle boarding, doing fun things with friends whenever I wanted, and scuba diving with sharks (my favorite hobby). Instead, my life revolved around treatment and my intense protocol’s daily schedule. My entire day and meals revolved around my health. I lost friends when I was less available to them, I received criticism for the treatments that I was doing, and I felt like no one understood me. I slowly became more and more isolated over time, and had a select few friends that really stuck by my side and were flexible with me. I felt like a burden on my family, for spending all of their money on my expensive treatments that many times were not visibly making a difference to my health. I felt lost and hopeless and desperately wanted my life back. However, on a more positive note, my journey with Lyme has also forced me to look inward and grow. I spent much, much more time alone. I got to know myself better and my priorities completely changed. I feel like I grew into the best version of myself, despite the terrible circumstances. My friends told me they admired my strength and positivity despite all I was going through, and this inspired me to start my blog, which I am now very passionate about. I want to share my story in hopes of raising awareness, helping others feel less alone, and inspiring others. I hope reading my story and the various treatments I’ve tried and what I’ve learned along the way will be helpful to others, as Lyme is so difficult to navigate alone.

What inspires you?

I am inspired by fellow Lyme warriors, what they go through, and what they’re up against. Many of them have such an amazing attitude, even when they’re going through hell, which I find incredibly inspiring. There is such an amazing Lyme community out there. I am inspired by my body’s resilience despite all it has been up against. I try to keep my eyes on the light at the end of the tunnel and envision what my life will be like once I am out of this mess and in remission, which I WILL reach, which inspires me to get through each day. I will truly have a new appreciation for life and a new mindset, I believe I will flourish due to all I’ve learned through this journey and life will unfold for me beautifully.

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

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

When my daughter was around 6 months old I started getting really sick. I had the flu or a bad cold every two to three weeks. I was convinced that my lack of sleep was causing me to get sick. I even thought our house had mold and I had our basement cleaned with bleach. But, no one else in my house was getting sick. I never remember getting a bite, nor had the bullseye rash.

Around my daughter’s 1st birthday, the top of my right foot, toe and ankle started hurting really bad. I couldn’t hardly walk especially after taking walks. My PCP referred me to a Podiatrist. The Podiatrist couldn’t figure out what was wrong with my foot so he referred me to a neurologist.

By the time I was able to get an appointment a couple months later to the neurologist I started having all these other problems. I woke up every morning like I drank a whole bottle of vodka the night before. I felt so hungover, but yet I didn’t have a drink of alcohol the night before. I woke up with the worst headaches and I had nausea. My whole body hurt. I felt like I was in a car accident. My back hurt, and I had this knife in my neck that transferred to my spine down into my shoulder blades. My muscles were so weak I struggled to carry my daughter downstairs without my arm feeling like it was going to fall off. The neurologist did test me for Lyme disease along with 15 other tests, but the Lyme disease test came back negative. They diagnosed me with fibromyalgia and told me I was depressed. I didn’t want on depression medicine. The only reason I was depressed was because I felt like $#!* Every day of my life! I asked them to, “Please, help me, there’s something wrong with me.” They told me they were trying to help me. “We are trying to put you on depression medicine for fibromyalgia.” I got mad and said, “I don’t have fibromyalgia!”

How has Lyme Disease affected your life?

I got infected or so we think on my 21st birthday. I never knew Lyme disease was such a big deal and I come from the place it was discovered. For a long time it took my health, my love for exercise and sports, my love for cooking and even my dream of becoming a vet. I have pain daily in my arms and legs. The fatigue some days is enough to make you want to go back to sleep before you even get up. It’s affected relationships I’ve lost a lot of friends but also gained some. It’s made me see the value in family and a support system.

What inspires you?

My career inspires me, I am currently in school getting my DVM. I never thought I could do this, but here I am starting my 2nd year of vet school coming up on my 4th year diagnosis anniversary.

“For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.” – Romans 8:18