My battle with Lyme Disease

I am writing because I believe that the world needs to become more aware of a terrible disease that I am suffering from. If the awareness can be raised, so much could be done for those who suffer from this terrible sickness known as lyme disease.

I'm 26 years old. A few years ago I was a college athlete. I was in the finest shape of anyone that I knew. At so many points in the past year I have felt near death, and have felt that I was about 70 years old. About a year ago in february 2008 my entire world started to fall apart and bring me into this personal hell that I am in today because at some point in my past I was bit by a tick that carried a lyme spirochet.

My story is so similar in several areas to individuals that suffer from this disease. I've gone from thinking I'm insane to realizing I'm very common to others at my exact same age that have similar problems. In the past year I've gone through it all it seems. I've went from being a guy who still carried himself like a college kid in a lot of ways to being an adult in what seems overnight. This disease can do that to you. I've been through doctors who tell me I need anxiety medicine, insurance companies who deny my claims and leave me without money to pay my bills or get proper treatment, superiors in the workplace that mock my illness and use it to my disadvantage, loved ones who told me I was crazy, a test for Lou Gehrig's Disease, sleeping on my mother's basement couch because I couldn't afford to eat. I've felt like I couldn't breathe so many times I was sure I wouldn't wake up the next morning. I've watched my peers have children, get promoted, and get married while my engagement got broke off and my fiance moved home. I gained weight because I'd been fighting infection for so long my thyroid stopped working. I've been so dizzy I couldn't walk. I've had panic attacks at Bruce Springsteen concerts--but I couldn't figure out why I couldn't sit still and had to run to the bathroom every song to freak out. I've seen cardiologists. I've driven hours to get treatment from a doctor who knows how to treat Lyme. If it is possible for a person to live an entire lifetime within a year; I believe I've came close. The most amazing thing is NOT what I've been through. It is rather that there are thousands of people around the world that are going through the same thing as me and probably worse. It astonishes me and scares me. I want to tell you my story to give you a sneak preview. I want to tell you my story because if it hits one set of ears and one person remembers it, it will make a difference I believe. At this point, raising the awareness of this disease and educating someone, ANYONE; is a victory.

Before my story begins, I'd say to whoever is reading this that someday in your life you will probably know someone with Lyme disease. It could be someone close to you. When you meet them; you will know that it is no joke. I pity them, and any loved ones they have. It will be the hardest battle of their entire life. It will test them emotionally and physically. I used to be able to hit a 90 MPH fastball over 400 feet like it was nothing. I could run for endless miles. I could bench press twice my body weight. Nothing I've ever done or tried to conquer in my life comes close to this. Nothing. If there is something worse, I'd be interested in hearing about it. People often say "at least it isn't cancer." No it's not. It's not terminal my doctor says. I promise you, there are days I feel as badly as someone who is going through the hell that is cancer. This disease ravages one's body.

Back in february of 2008, I noticed some funny things began to happen to me. While I'd experienced weird anxiety in the past; nothing was like this before. I'd be running on the treadmill and all the sudden my heart would skip a beat, or a rush of adrenaline would hit my chest. I would have to jump off the treadmill and run outdoors and get fresh air, calm myself down. I thought, man I am surely going crazy if I all the sudden feel I'm struggling to breathe. I started to worry about heart attacks when I'd run. I also had been routinely running 2 to 5 miles for years almost every night. These runs began to really cause me to labor. I stopped losing weight no matter how much salad I ate or how many nights I worked out. I'd cut my runs short all the time because my legs felt heavy. My joints hurt. I would find myself gasping for air, bent over after just a few short strides. I remember saying to my girlfriend at the park that I couldn't have possibly gotten old overnight or gotten out of shape that fast; but that is how it felt.

By March I had seen my doctor about the horrible chest pains I’d been having. It felt like a heart attack almost nightly and by this time I had developed sleep apnea almost overnight. I spent many nights awake all night long, as I would drift off to sleep I would wake myself up as soon as I would achieve rest because my body would stop automatically breathing. I went to work many mornings on no sleep at all. When I saw my general practitioner about the chest pain I was having in my left side, he said it was a torn pectoral muscle. He said I’d probably done it lifting although I admittedly hadn’t been lifting much at that point.

Time marched on and I began to decline rapidly. My then fiancé began to think I was absolutely crazy. My family began to think I was losing my mind as well. I had a doctor who was considered a very smart man telling me I was as healthy as could be yet every day it was a new symptom. I began to research symptoms on the internet. I started a new job in April of 2008 and was determined to be the finest employee they’d ever had. My body had other ideas. During the orientation on my first day on the job I had to stop the orientation leader mid-sentence and go to the restroom. I was having a panic attack during the presentation. When I returned I told the gentleman I was just feeling faint and that my blood sugar was low. I knew it was more then that.

I continued to have nightly panic attacks. My resting heart rate would jump to 120 beats per minute when I would be laying in bed at night. I called 911 on more then one occasion thinking I was having a heart attack; with the chest pains, anxiety, and irregular heartbeats wreaking havoc on my system. About the third time the guys showed up, they were just laughing at me. My fiancé was also telling me I was crazy and went to bed many nights so mad at me she wouldn’t even speak to me. She said unless I got help with my mental problems she was going to leave me. She changed my computer password to “whack job” so I could no longer research symptoms on the internet. I spent many sleepless nights on my couch, with tears streaming down my face wondering how everything would end for me.

One night in early May before my diagnosis I hit rock bottom. I had an aching left leg all day long that throbbed and hurt so insanely I couldn’t even begin to describe the pain. I went for a run that night and when I came back in I was so drained I lay on my couch just wondering what would make a leg throb like that so badly. I was convinced that I was suffering from a blood clot in my leg. I called my mother after midnight to see what I should do. She suggested if I was worried, that I should go to the emergency room. With my girlfiend asleep, I realized I wouldn’t dare wake her and tell her that I needed another trip to the emergency room. I got in my truck and started heading up the road to the hospital. As I began to drive there, I felt an intense rush of adrenaline in my chest and the ache in my leg left my leg and entered my chest. I put my hand on my pulse and my heart rate was going out of the ceiling. I suddenly couldn’t breathe and could feel myself passing out behind the wheel while driving. I pulled my car off to the first access road I could and dialed 911. I could barely tell them what was wrong with me. Just to send help. As I sat in my truck, I looked over and saw that it was my high school baseball field off in the distance, where just a few short years ago I’d been one of the better players on one of the better teams in school history. I was young and strong then, and those days seemed so far away from my present state. As the ambulance arrived, I climbed in the back to see my heart rate up. When I got to the hospital they ran a myriad of tests, and I was treated once again like a crazy person. The doctor in the ER told me it was an anxiety attack and sent me home. The problem was when I stepped outside, I’d realized that I did not have a car there, my truck had been left 15 miles away parked on the access road. I was not allowed to stay in the waiting room. I was told the cab service didn’t begin until around 6 am. It was 3 in the morning and I had to be at work at 7 am. I called my mother who told me I needed to stop my craziness; and then she hung up on me and told me to call my girlfriend. They were not getting along at this time with my girlfriend constantly threatening to move home; and when I called my girlfriend she angrily hung up on me and told me to call my mother. I began to walk home, wondering if I’d make it back to my truck in time to get to work. I wept just wondering what was troubling me, what so awful could be doing this to my once amazing life. My girlfriend eventually showed up to pick me up and we fought the entire way home, with me pleading with her that I knew something was wrong.

In June my father was doing a lot of work on his horse farm. As bad as I felt, I could not let my dad do this work alone. He is older and he needed someone to help him. I felt it was my duty. I would show up after work and help him bail hay. For anyone that grew up doing this task, they know it is very hard work for a healthy person. I did the best I could for several nights. On the last night it was a 90 degree day with heat reaching higher then that inside my father’s barn. I really labored through this work. I would throw a bail to my father to stack and then I’d bend over and have to suck wind and catch my breath for several minutes. I looked up and I could see it in my dads eyes. He knew something was wrong with me. He could not believe the level of fatigue and the struggle I was having. He’d seen me run up and down the road too many times with ease. He’d seen me outwork groups of guys when I’d bail hay. He just knew and right then he started to put things together that something was really going on with me.

Around that same time I began to develop horrible cramping in my left foot arch. I had widespread muscle twitches constantly, all over my body. My bones were creaky and ached when I walked. The pain was now in both legs and arms. My arms felt like 100 pounds hanging from each side of me. I was literally falling apart; along with all the other symptoms I mentioned earlier.

By this time an internet search had led me to ALS, as my symptoms were this exactly. I was convinced I had the disease. I now had trouble talking. I had trouble breathing laying down. I was beginning to lose feeling in my left hand, it would not work correctly. I would be typing at work and my left hand would lock up and I’d have to use my right hand to get it to unlock and straighten out. I told my general practitioner of these symptoms and my ALS suspicion and he told me while it was highly unlikely and probably just anxiety, that he’d schedule me with a doctor who specialized in ALS testing. This was late June 2008.

For the next few weeks I was living in a depression of a young man who’d felt that he had a death sentence. I couldn’t eat. I couldn’t sleep. I couldn’t enjoy anything. I cried and sobbed. One day an internet search led me to a link that talked about Lyme Disease being the great imitator of diseases like ALS and MS, and that even some long term undiagnosed cases of Lyme were turning into ALS. I wasn’t crazy. I pulled my girlfriend into my room and told her to look at what I had found. She told me I was nuts. Ironically, I had made fun of my girlfriend for years calling her “my little lymie”. She had a very acute case of lyme disease when she was younger, getting over it after 3 weeks of antibiotics. It is cases like hers that cause the myriad of problems that face people like me who are chronically ill today. It is cases like the one she had that cause people to be uneducated about the disease. Little did I know that I would learn a lot more about Lyme disease, a wealth of knowledge and information and that it would work to destroy my life and everything I’d ever worked to earn. Lyme was then in the back of my mind but my focus was still on ALS, Lou Gehrig’s Disease.

The day for my tests at the neurologist came and as I sat in the waiting room with my girlfriend she wouldn’t even speak to me. I sat there and shook with nervousness about my fate that I’d soon know. As we went into the testing room I had dozens of needles stuck into my muscles. I was shocked with small waves of electricity to see how fast my neurons were reacting and sending signals from my brain to my muscles. My times were within normal range. I was told I did not have ALS. As I was relieved when I walked out of the clinic, my girlfriend was angry. She gave me an ultimatum that I needed to get my mental state together or she was gone for good. I didn’t blame her, but I still knew something was wrong. What could explain all that was going on with me? One cannot possibly imagine how incredibly puzzled I was.

That July 4th, I went to my fathers farm for a cookout. He set up a lawn chair in front of his house, as I was so sick I could not walk. I could not get out of the chair. I couldn’t eat. I was having trouble breathing and speaking. He told me that night as we talked in the moonlight that he’d seen a special on Lyme disease on television. He said that it sounded an awful lot like what I was going through. I told him I had the same suspicion as a lot of the symptoms matched me. He suggested I have a test and so I called my GP and told him that I wanted to be tested for lyme. One thing that is important to note is that doctors here in Ohio and so many regions of this country know nothing about lyme disease. They know the basics but they have no clue about how to diagnose, how to test, or anything about it because it is so very scarce in some areas. Columbus, Ohio is one of those areas. On the east coast such as New Jersey where my girlfriend is from, Lyme disease is much more prevalent. This is where I believe at some point I was bitten by a tick and contracted the disease.

I got tested for Lyme disease and several weeks later my doctors secretary called. I did not have lyme disease she said. From there I did not know where to go. Maybe I really was crazy. I began taking anxiety medication daily. The dizziness and drowsiness got worse. All other symptoms continued. I just kept asking myself how could I be so crazy. Then a call came from the doctor’s office, suddenly I did have lyme disease they told me. He said I had “an acute case, that it was a grandfather infection meaning it was half old and half new”. He said it was good news because it was easy to treat! Hallelujah. My troubles would soon be coming to an end. Ironically, my journey was just beginning.

I was given doxycycline, a 3-week supply. Doxy is known to be the lyme disease wonder drug. After 3 weeks I actually felt worse. Everything was worse. When my antibiotics ran out my doctor was on vacation and unable to meet with me for several more days. When I went back to his office I presented him with some knowledge about my condition, and that I’d read it takes some people a long time to get over lyme disease. He told me I was well, and told me he didn’t know how much of my remaining symptoms were lyme disease and how many of them were my anxiety issues. I couldn’t believe it. It was just like so many people had warned me about in an online support group known as LymeNet. They told me that a general practitioner would never get me well, never be able to treat it; but I believed otherwise. They were completely right. He then said well if you think you still have it you’ll be sent to an infectious disease doctor (which I was told they also are part of the conventional thinking that lyme is easy to treat and get rid of). Finally, I convinced him for 3 more weeks of antibiotics to get me well for good. As I took these antibiotics I became violently ill. Later, this process would become more common to me. This process is known as “Herxing”, short for a Herxheimer Reaction. These reactions happen when the toxins in the body are being killed off by the drugs. The toxins are exploding in the body causing an intensifying of all the symptoms. Everything got worse. Anxiety so bad I was convinced I’d drop dead at any minute. Everything hurt. I shook from fever chills. All the while I continued on at my new job, doing the best I could and informing my boss that I was afflicted with lyme disease. Each day he’d ask “are you better yet” and I’d lie and tell him that I was getting better. The same thing happened with a lot of my peers. They’d ask if I was better as well. Even my family thought I’d be out of the woods in a few weeks.

After that cycle of antibiotics ran out, I called my doctor feeling as sick as ever and said I’m not well and I need more. I was told he was discontinuing me as a patient, that if I felt I was still sick I’d need to find someone better served to treat it. He told me himself that he’d only treated one case about every 8 years or so since he’d been in practice. All of this would have been nice to know before I’d racked up around $1,000 in doctor bills for someone who did not get me close to well.

I struggled with what move to make next. Someone from the internet forum on LymeNet messaged me with 2 doctor names, but neither took insurance. I had no choice. My life was falling apart and slipping away. I called and scheduled an appointment with this doctor; who we’ll call Dr. J. I had been told that she had a wealth of knowledge and success and that she had gotten rid of tons of lyme through the years. The problem was that the appointments were over $300 per appointment, and she did not accept insurance. She also was in Cleveland, which is over a 2 hour drive both ways to get to her office. Stil, I was willing to pay the price to get well. With the help of my family I was going to start her treatment regimen in September. The week before I was scheduled to see her, my fiancé gave me back her engagement ring and told me that she was moving home. She was homesick and we had been through so much through the months. I couldn’t blame her for being a bit freaked out. While it hurt worse then anything in my life to be left alone on my couch that night, so sick I couldn’t lift my head up; I wondered how I could ever get through my battle basically alone.

She moved back to New Jersey. I was strapped into a new house payment for the condo I’d purchased in February of 2007. Things were supposed to be so much different. I was supposed to be married. This house was for both of us. There I was, so sick and broken I couldn’t even move and left alone to pay for my home for two all by myself. My body felt like a broken down piece of farm equipment. As my date to see the LLMD (a Lyme Literate Doctor) approached, I often laid alone in the dark late at night in my lonely house and felt trapped in my very own body. I’ve heard others describe that common feeling as well.

When I went to the Dr. J, my father accompanied me. We talked a lot on the way to Cleveland. When I arrived I filled up about 30 test tubes of blood. In a few weeks my tests would reveal some shocking things. In the meantime based on my symptoms I was being treated with Doxycycline, Flagyl, and Zithromax. I would return in 6 weeks for my results and to go over everything. My doctor said to me that I just “had to be a patient patient”. She assured me and my father that she would get me well.

By this time at my place of employment, things were starting to go downhill. I’d missed some days of work because I couldn’t get out of bed. I was literally so sick some days I couldn’t move. In addition to that I had some other symptoms that were puzzling. I’d stopped eating pretty much because everytime that I ate, I’d start to feel sick. I’d start to feel achy and my heart rate would beat wildly. It would cause my heart to race. I came to find out this is because I suffered from thyroid problems from suffering from illness for so long. The dizziness was so bad that walking at work became something that made me look at the clock all day long. While my boss (who was the man who hired me) was kind about my illness, I had a superior named Joe who was very mocking in nature about it from almost day 1 when he found out. He’d ask me things like “aren’t you well yet”. He’d talk to other employees about how I used Lyme disease as an excuse to miss work. He constantly tried to make me do physical labor when my job that I was hired into was accounting work and deskwork that met my doctors restrictions. Anytime at all that I did anything physically exerting, I’d start feeling weak, dizzy, shaky and my brain became foggy and groggy. Soon another upper level employee who I had a good relationship with began to bother me about my lyme disease. He was almost brainwashed into thinking something about me that wasn’t true, as Joe had told him things about me that made him form a certain opinion about me. He asked me “when is the lyme disease going to clear up!” and I told him I wished I had an answer. There was also a rumor circulating that the data center I worked at would be going to a 24 hour schedule, with a day crew working 12 hours and a night crew working 12 hours. The rumor was, that I’d be moved to the night schedule and doing maintenance work.

When I returned to my LLMD Dr. J, she had the results back of my blood tests that I’d taken weeks earlier. They were staggering and even more shocking since I’d been told how crazy I was and healthy I was all along. The truth was, I was a very very sick young man, and more then just Lyme was ailing me. I had not only a VERY positive test for Lyme disease (keep in mind my GP had told me I was cured) but also mononucleosis which had never been cleared up from my senior year in high school! I also suffered from chronic fatigue, fibromyalgia, and many low vitamin and hormone deficiency because my body was trying to fight off multiple illnesses for so long. I had dangerously low vitamin D, dangerously low testosterone (mine was in the 200’s while a young guy my age should be in the 700-800’s easily) and dangerously low cortisol. I had low thyroid which was causing problems, as my doctor said I couldn’t lose weight if I tried. That explained a lot to me. Also the low testosterone explained a lot to me as well. For a long time my girlfriend complained about my lack of sex drive. Anyone who has ever seen my girl would agree she is a beautiful young lady. In my opinion she is the best looking girl I’ve seen (favoritism). It wasn’t that I wasn’t attracted to her. But I made excuses. I took different guesses at what it could possibly be causing me to not want to have much physical relationship with her. But I had no idea really and it sounded like I was making excuses because I’d always guess something different. What it was, was a sign that my body was very far from being healthy and headed in the wrong direction. My doctor said many of my levels were so off that they resembled someone who was dying; which is how I felt. I asked her if I was going to be okay. She said while I wouldn’t drop dead we had to address these things right away. She takes a whole body approach to treatment, she said to win the war we have to get my soldiers healthy first. She started me on all kinds of supplements in addition to the multiple antibiotics treatment. These supplements were also very expensive, between $20-60 for a months supply per bottle, with multiple bottles. I also have to buy thyroid medication from a compound pharmacy as well as testosterone shots I take daily. These are over $100 a month.

As we drove home from Cleveland that night it was one of the first and only times I’d seen my father cry. We were talking about me researching my symptoms on the internet and how crazy it was that me and him had been correct from pulling lyme disease out of nowhere. As he wept, he said he was sorry that everyone thought I was crazy; with the image of me frantically just trying to save myself going undiagnosed. My mind then shifted to all the people out in the world now who haven’t been diagnosed with lyme disease yet. They’re the really unlucky people.

The long and winding journey was still in the beginning stages. I’d suffer through so many symptoms, and every day was a new challenge presented. I was told by a long sufferer that “when you have a new symptom and your body is going nuts and you don’t know what it is just know its lyme”. I had awful hot burning skin. I would wake up each morning shivering like I had a fever. The herxing I experienced was incredible headaches, so bad I was sure I was having a brain aneurysm one night. I got in a pattern. I’d go to work, come home, lay on my couch the rest of the evening; wake up, and do it again and again and again. I literally was wiped out after an 8 hour shift. Then my company hit me with a bombshell around Thanksgiving of 2008.

I was going to be moved to night shift, and the decision came down from Joe who had designed the new schedule which was designed to reduce overtime at the facility. I was being stripped of my office work duties that met my job restriction and the man who hired me was abruptly leaving the company. A man who had done everything he could to harass me about my disability was now my boss. I had 3 days to prepare for the shift change. My doctor said that this was not a good idea, that by doing this I’d make myself sicker since I’d been living on a day clock and day hours my entire life, this would be hazardous to my health, altering the bodies’ natural circadian rhythm. I told my company that I needed them to work with me as they had been doing, as my old boss had been doing; that I had work restrictions. Joe did not budge and talk of terminating me was openly discussed and rumored around my workplace. Finally, at the advice of a family member who is an attorney I got in touch with my HR department and let them know what was going on. I was placed on short term disability, which I was told was 75% of my pay. This was going to hurt me; but I agreed to do it because I physically couldn’t handle the shift to nights and physical labor of managing the data center (which was sadly one man’s personal vendetta against me). To afford my rent which is around $1,500 a month; along with my other bills and treatment, I did the math. I wouldn’t have enough money but my family members have been a big help to me. My mother has been a blessing, supplementing my income as best she could. Whenever my girlfriend came into town she paid for everything. While being very humbling, the people I love have shown me they care by helping me. I had to also get a roommate.

Some of the darker days then ensued for me while off on my first month of disability. The insurance company called to say that they’d denied my claim. It wasn’t supposed to be this way. I was led to believe that I would get approved, as sick as I was I don’t know how I could possibly get denied. A “cream will rise to the top” type of thing. The insurance company told me that people with lyme disease usually aren’t treated like I am being treated by my doctor. They said that my LLMD’s notes didn’t support my claim, and my symptoms had “gone away”. They gathered this from the fact that at my most recent appointment, I had told my doctor that a lot of my symptoms were improving. They still weren’t anywhere near being gone! I went without pay for over a month. This is a perfect example of how ignorant insurance companies and common doctors are to this illness. In a documentary that I had seen called “Under our Skin” about Lyme Disease, they had a segment about insurance companies and their war with chronic lyme disease. Now I was seeing what they were talking about firsthand.

The stress made me a lot sicker. I couldn’t eat or sleep. I laid awake so many nights until 4 or 5 am worrying about life. I thought to myself that it was at these moments when the rest of the world was sleeping and I laid awake helpless and worried that this wasn’t how anyone should live their life. I wondered if I was actually dying. I had no money for food after paying my bills for the month on my little amount of savings so I had to move in with my mother for weeks at a time. I burdened her with my stresses. I slept on her couch in her basement. Finally at the end of December the insurance company decided to overturn their ruling, however it was only approved until the end of December, and they added that they’d need updated doctors notes to approve me any further.

I attended my next appointment early January, making sure my doctor took detailed notes. She also said that in addition she’d be providing the insurance company with a letter saying that I was still very sick and that her restrictions on me remained. She noted that this time would help in getting me better and maybe when the 6 months that was allotted for short term disability was up, I’d be well enough to return to work.

As I waited for my next claim to get approved, I was subject to rude and harassing calls from my case manager. She would call me and ask me questions that she should have been asking my doctor. Asking me what symptoms bothered me, reminding me every step of the way that I wasn’t like the typical lyme disease patient. I told her that I was not able to afford any treatment and not eat some days because I had no income. She said that it was taking them longer because “Lyme disease isn’t like a broken leg”. I replied that I’d rather have a broken leg, in fact two. I told her I thought that they’d approve my claim for longer then a month, and she continued to ask when I was going to get well. I realized the conversation was going nowhere. The next time I heard from her, I knew bad news would be given.

I continued to live with my mother and the drill of living in her basement. I carted to her house my box of pills, which looked like an old person would take. I take about 30 to 40 pills a day. Amazing for someone who wasn’t sick. I wasn’t able to get out of bed for hours in the morning after I awoke because I was in so much pain. I would try to work out at my mothers house, but a simple 20 or 30 minute walk on the treadmill made me so dizzy. How sad it was for me to fall this far from the guy who just years ago could run endlessly and lift huge amounts of weights. It depressed me more and more. Time marched on, another friend would announce they were going to be a parent. Another friend would get engaged. Another acquaintance would get promoted. It became agonizing for me. I was stuck in a permanent freeze of hell that this disease had created for me. Then Hell got worse.

I got a call from my company. They had called to inform me that they’d given away my position; something that as of the time of I’m writing this my lawyer is looking into but says is highly illegal. They told me that if no position was available when my doctor declared me well, that they’d be discontinuing my employment with them. I was crushed. I’ve since learned that the VP who called and told me the news (along with an HR rep) told another employee that I was no longer employed there—revealing their ugly plan to really just push me out the door. They never planned to bring me back and I knew it. I had no job to go back to; but they said to continue working for my short term disability here in the immediate future and let them know when I’m well. I told them I knew exactly what they were doing. It was predictable.

Another employee who stuck up for my being harassed about my illness was fired from the company for doing exactly that, telling HR that I had been violated and discriminated for my disability.

Things continued to snowball when at the beginning of February I got a call from the insurance company. They said; to no surprise, that they again were denying my claim. The reason that they denied it was because their doctor said that my doctor was planning on treating me with antibiotics way longer then the “normal” lyme disease patient. They told me that typically people weren’t treated with antibiotics as long as I was. I told them actually that I knew many folks who’d been on antibiotics for a number of years. They said “well yeah but that is not normal”. Any loophole to escape giving me what I deserved, I told myself. As I hung up the phone and as I am today, I am without any real plan going forward; I just know I have to go forward.

Ironic and kind of silly that the insurance company first denied me because I wasn’t sick enough, then came back the second time around and denied me because I was too sick. As I was told, they’re paying their “Doctor” a lot of money to look for reasons to deny people. They don’t make their money by taking care of people, especially Lyme disease patients. Just another terrible aspect to this horrifying disease that will leave you tortured, ridiculed, and left with nothing unless you are willing to fight.

TO anyone who reads this who has been there for me, you know who you are. I love you for it. You are my lifeline in this world and I promise I'll never forget you for it. If and when I ever get well I'm going to pay you all back two-fold.

Thanks for reading my story, and God Bless you.