© Image by Life in Lyme Light.

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.

© Image by Life in Lyme Light.

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

© Image by Life in Lyme Light.

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.

© Image by Life in Lyme Light.

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!”

I decided to go get a 2nd opinion at another neurologist which took months to get into. In the meantime, I went to physical therapy for months which they made my neck/spine/shoulder blades and foot feel worse. So, my friend referred me to a 2nd physical therapist. I had relief some days but other days I felt worse. They ended up discharging me because I made no progress.

The 2nd neurologist saw me for maybe 5 minutes and didn’t listen to me as I complained about the knife in my neck and put me on a, “migraine diet.” I logged everything I ate and wrote it down on paper for him.  Months later I went back to the neurologist for a check up for my “migraines.” The nurse in the room stuck up for me and told him I was there because of the knife in my neck and spine. To make a long story short he referred me to go get an MRI on my neck and spine. Of course that took months again to get in the place and another month to get the results read by the neurologist. The neurologist laughed at me and said, “Everything looks great, your in great health.” So I felt hopeless at this point and cried like a big baby the whole way home on the 20 minute ride with my poor precious daughter sitting in the back seat. As she watched me ball my eyes out because I spent the whole year with her bringing her to appointments with me trying to find out what was wrong with me.

So, around my daughter’s 2nd birthday. Everything just keeps getting worse. I thought I had cancer and I was dying. I struggled to take care of my child. I dreaded having to take care of a human being when I wasn’t well enough to take care of myself. I was a stay at home mom by myself with little help because her dad works 60 plus hours to support us and I don’t have grandparents that help. I had shooting pains in my neck just to change her diaper with the knife stuck in my neck. I felt weak. I couldn’t even open a milk container to get my child a glass of milk. Both feet started hurting. I had really bad shooting pains in random spots and muscle aches. The worst headaches. I had cramps in my stomach and I couldn’t sleep at night with night sweats and pain.

I called my PCP to help me and he told me I might have Lyme disease and he wanted to get me tested for it again. The test came back positive for Lyme disease. He started me on doxycycline for a week but the pains in my stomach just kept getting worse and I had persistent diarrhea. He put me on Amoxicillin for a month which at least I woke up and I didn’t feel like I was hungover! But I still had symptoms. I was put on Cerofrom or something(21 days) I can’t remember but I still had symptoms. I was put back on doxycycline for 30 days. It took away my headaches everyday, and the knife in my neck and spine but I still had symptoms.

I starting getting arthritis like pain in my hands, joint pain, my muscles in my thighs hurt along with pains down the top of my arms. My PCP referred me to a rheumatologist. They tested me for 15 more blood tests and got more X-rays. But, of course they told me I had fibromyalgia too. My PCP then referred me to an infectious disease specialist in Altoona. Of course I got more blood work and still no answers. And he wasn’t doing anything to help me because he said “Lyme disease is complicated.”

I then was referred to a infectious disease specialist in Pittsburgh. Which he told me I may have a thyroid problem or I have syphilis. Both tests came back negative and told me to go back to my PCP. Which, I later read an article about the same hospital that I went to was being sued for mistreatment and misdiagnosed for Lyme disease. The numbers keep rising apparently for people suing because all their symptoms got worse over time(as all of us Lymies already know).

Currently going on 2 years of this I just have learned I have to fend for myself. I cannot afford an LLMD.  I plugged myself into a Lyme support group that has been super helpful. I am changing my diet slowly and drinking tons of lemon water and green tea. I take a detox bath two times a week. I am taking Amoxicillin again for the 2nd month along with probiotics and vitamins. I heard acupuncture works so I plan on doing that soon!!! Because I still am not well and still have really bad “Lyme days.”

Lyme disease has robbed my experience as a mother. I wasn’t able to enjoy my daughter the way I wanted to. On my good days I try to enjoy her as much as possible. As she just turned 2 and a half years old. I just thank God everyday that my daughter is the happiest, healthiest, most awesome, funny, cool little girl and I didn’t destroy her personality bc of my miserable disease as I faked being healthy (except the ride home crying that day) every step of the way so she would be a happy little girl unlike her sad, depressed, miserable, “dying” mother. I am hopeful that I will get better in time and I can live a normal life and start enjoying my daughter. I don’t wish this disease on my worst enemy. This disease sucks and someone needs to find a cure so people don’t suffer for years. Thank you for reading my story.

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

How has Lyme Disease affected your life?

Have suffered for 18yrs. Also lost my career and now have to live on Social Security. Would have committed suicide also a long time ago because all of those around me have not given the support they should. But I am a Born Again Christian and Jesus is with me. > One CRUCIAL POINT I NEED TO MAKE is that when the lyme was the worst, I heard the audible voice of God tell me to take the herb SHEEP SORREL. I did for awhile but in my screwed up “flesh” decided it was not showing enough progress and quit. HUGH MISTAKE. I mean I literally heard the audible voice of God say, “sheep sorrel”. I didn’t know what he was even saying because I had never heard of the herb – so I wrote the words down, called local health food store and learned it was in fact an herb….So I quit taking it. To this day I cannot believe I did that. Have endured said disease and lost so much only to find out that SHEEP SORREL CLEANSES THE BLOOD – EXACTLY WHERE THE SPIROCHETES LIVE. So, I strongly advise anyone who comes down with this disease to TAKE THAT HERB AND NEVER STOP. It is water soluble, so you cannot become toxic by it.

What inspires you?

What most inspires me is the Bible.” – BJ

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

In high school, I was around 125 pounds, athletic, averagely in shape, had good grades, and was very social. During my senior year I had put on weight in a matter of months and the following summer after graduation is when everything started to really go down hill. I was moody, slept constantly, wasn’t doing well in school couldn’t remember things here and there, had stretch mark like scars all over and they went around my entire waist like a belt, under my arms and the side of me, and down my inner thighs, my hair got thinner, and I was severely anti social. I thought I was losing my mind because no doctor knew what was wrong so they would just send me on my way and tell me it’s all in my head or that I just need to take better care of myself. I got through my first semester of college (failed everything) and moved into the second semester still thinking I was just crazy because no one thought anything was wrong and that college must clearly not be for me even though I did well in high school. So middle of the second spring semester, (2014) I was working for my mom at her preschool and a parent had come in telling her about her 13-year-old daughter and 3-year-old son who were very sick and was telling my mom about their symptoms and when she started talking about her daughter my mom started noticing similarities between her and I and called me up to talk to this parent. Turns out this parent is also a doctor and asked if she could see my waist- not knowing the slightest bit what was happening I showed her the scars and she went into full doctor mode and started going to town with information to my mom about what to to do. And instead of going on a spring break trip with my friends, I sat in a doctor’s office talking about treatments and taking a medical leave from college and pretty much saying goodbye to life for a while which included the classes I was currently in at community college, I had just been accepted into an internship and been accepted into an out of state university-  all just a couple days before being diagnosed.

I started out detoxing, then supplements. And I thought the supplements were horrible just by themselves. I also changed my diet- no gluten, no sugar, no dairy. Then by May was finally starting on antibiotics and oh my word I have never felt so sick and helpless in my life. The summer was brutal now mind you I live in Texas so on top of feeling horrible it was also raging hot. I did the normal working up to different antibiotics and doses but every higher dose or new drug made me feel more and more helpless. And by the end of the summer I was ready to give up. I felt like my body was no longer indestructible and that if I even got through this than there would be no way to have a normal life after because I knew things would be different. Come September I was finally clearing up and feeling better and from there it was a steady climb uphill and everything went smoothly, I was able to slowly decrease antibiotics and I was able to go out and not be stuck in bed. January 2015 I was finally declared in remission and the weight that was lifted off my shoulders is indescribable. I was left with a couple of set bacs that I refer to as” permanent damage” being that it was in my brain so my emotions are pretty much shot, my nervous system which causes severe anxiety, faulty hearing, my MTHR gene needs a supplement, and I cannot have kids. And I stay on a gluten free diet but I wouldn’t consider that horrible.

But I got my life back.

© Image by Life in Lyme Light.

How has Lyme Disease affected your life?

I have been battling Lyme Disease for over 5 years now. I know that is a very short time compared to others who have been battling for, sometimes, decades. However, when I was first diagnosed and going through different treatments, I began to feel like my whole life was affected by Lyme. I didn’t know who I was and I felt like I had lost myself and I had become this awful disease. Then I came to the realization, which has now become my mantra: “I am not Lyme Disease and Lyme Disease is not me, but I am who I am today because of Lyme Disease.”

What inspires you?

This mantra (above), inspires me. However, there is another quote that inspires me also:

“If you ever have a bad thought about yourself send it back to hell because that is where it came from.” -Brigham Young

This quote has helped me get through some really hard days with Lyme. It has helped me keep going when I just want to give up, and give in to this disease.

I don’t think my wings would be very fancy, or very beautiful at all. I thing they would look frayed and worn on the edges. I would want them to look that way. I might have a few tears in them, but I am still able to fly. This shows that I have been through a lot, however, I am still making it. I am still able to fly.

© Illustration by Life in Lyme Light.

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

‘A Thief Named Lyme’

Undetected Lyme Disease is a stealthy, insidious, and patient thief that robs you of your life with no prejudice or mercy. Late Stage Chronic Lyme Disease, Babesia and Bartonella have taken my money, my job, and obviously my once taken-for-granted healthy life. Lyme and ‘friends’ (other TBD’s- Tick Borne Diseases) are sneaky. If you aren’t one of the ‘lucky ones’ to have found the tick and/or gotten the tell-tale bullseye rash then the chances of you having Lyme Disease and its ‘friends’ probably wouldn’t even cross your mind. It didn’t mine, especially after many negative test results.

My symptoms started in 2004 as left facial numbness, headaches, tinnitus, fatigue, and neck pain which are fairly classic Early Stage Lyme Disease symptoms. However, without ever seeing a tick (which can be the size of a grain of sand) and/or a rash it’s difficult to know for sure when I was infected. I have worked many summers on the island and grown up here as a child so I knew I had a higher chance of exposure, but not having found a tick I really wasn’t that concerned. I started seeing a neurologist who over the course of 6 years tested me 7 times for Lyme Disease- twice by spinal tap- all with negative results. At this point I was convinced I did not have Lyme Disease. Little did I know.

By 2008 my symptoms had progressed and seemed unrelated. I was being sent from one specialist to the next. Nobody connecting the dots that the facial numbness and migrating joint pain were related to the continuous sinus infections I was having for a year, or to the bouts of GI symptoms that kept me out of work for months or the year long fever I had for no apparent reason. By then the chest pains, dizziness, vertigo, anxiety and mood swings (lovingly called Lyme-Rage by us Lyme Warriors) had also joined in on the fun.

Fast track to 2012 when literally overnight my world got turned upside down. I had full body tremors, difficulty walking, cognitive issues, and my hands became painful and nonfunctional. Over the next 3 years I went to neurologists, rheumatologists, gastroenterologists, urologists, and my primary care doc more times than I care to remember. I even went to the Mayo Clinic for a week. The only diagnosis anyone could come up with was neuropathy (a disease condition of the nerves), but no one could figure out what was causing it.

With neuropathy my symptoms are shooting, stabbing, pins and needles, burning nerve pain anywhere and everywhere in my body. My toes, fingers, nose and ears always feel frost bitten. I can’t control my body temperature. Other symptoms include night soaks, urinary incontinence, light and sound sensitivities, coma-like fatigue, and insomnia. My muscles ache like I’ve run a marathon and then got hit by a truck, and also have the flu. The horrible body ache is my constant pain. I have confirmed memory loss, and major problems reading/writing/multitasking because of this. I have not been able to work since 2013.

On Christmas day 2014 someone suggested I watch Under Our Skin a documentary about Chronic Lyme Disease. After watching and relating wholeheartedly to it I immediately contacted ILADS.org for a local LLMD (Lyme Literate Doctor) and got tested at the right lab (Igenex) and low and behold I was positive for Lyme Disease (a spirochetal infection), Babesia (a malarial type disease), and Bartonella (cat-scratch fever: a bacterial disease). I have been in treatment ever since and unfortunately I will be fighting these diseases for the rest of my life. When Lyme is caught this late in the game it is termed Late Stage Neurological Lyme Disease and is the most serious form.

While I was waiting on a correct diagnosis, Lyme and ‘friends’ were pillaging one room of my house to the next. Moving from one organ system to the next- including my brain, heart, and nervous system. It’s taken over every organ system in my body and it doesn’t plan on leaving. If I had known the conventional testing was no better than flipping a coin I may not be in this situation.

Learn more about Chronic Lyme Disease and Tick Borne Diseases by visiting ILADS.org, columbia-lyme.org and watching Under Our Skin. Lyme and company can be misdiagnosed as MS, Parkinson’s, Alzheimer’s, Chronic Fatigue, Fibromyalgia, and many psychiatric conditions. My hope is that no one else’s life get’s robbed like mine or taken like the countless Lyme Warriors who have lost their lives.

(Published in the Washington Island Observer in Wisconsin about my Lyme journey. My family has a cabin there. It’s a 26 square mile island with more deer than people. Roughly 700 year round residents.)