When???

So lately we have been looking back into my medical history and have decided i have probably had this disease since I was about 5 years old. One of the many symptoms of this disease is personality changes. Which makes me wonder if i even know who I am? I can't remember when I was five, let alone before that. So how do I know what my true personality is? It's a very scary thought.

Pain

I am in pain all day of every day. But, a few days ago I was an unbearable amount of pain. All I could get my body to do was lay there while I screamed. The only thing I would imagine could even come close to comparable is being trapped in a burning building. Unable to free yourself from the horrible pain, but wanting to so bad! Your mind says "fight this, get free!". But your body screams "I CAN'T!" With Lyme it is a constant battle between the mind and body in many ways. This disease causes alot of indescribable things, pain being one of them. I mean everyone has been through pain. A paper cut or migraine, maybe even a broken bone. But I have broken bones and been through surgery and that pain does not even come close to the pain caused from Lyme. I guess what I'm trying to say is if you don't have Lyme and you think you can comprehend what I go through.. think again.. Unless you have endured what I have, and screamed in horrible, excruciating, pain that you cannot escape, then you have no room to judge. And that's all there is to it.

Depression/Anxiety

Lyme Disease is a serious disease. The leading cause of death with Lyme Disease is suicide. Many, if not all, Chronic Lyme Disease sufferers are affected by some sort of depression/anxiety.

Sadness. Hopelessness. Fear. Anxiousness. Stress. Anger. These are only a few words to describe the feelings of a person enduring depression/anxiety with Lyme. There are many reasons why Lyme would bring these horrid feelings to life. In my life its mainly caused by feeling alone all the time. I have never met a Lymie, face to face, that is close to my age. Of course, I have my facebook support system (ily all), however, on the rare occasion that I feel well enough to go go out with friends, or maybe just watch a movie at my house, there is no one for me to be around that understands how I feel and why I feel that way. This is very frustrating sometimes.

These feelings of sadness and hopelessness obviously don't last forever. I have days where I have the pleasure of experiencing feelings of joy, or at the least contentment. Unfortunately, these are the days that I generally endure the anxiousness, stress, and sometimes fear. Many days I am unable to sit still, whether my leg twitches, or my fingers are tapping, my body is not happy unless I am moving in some way. Take for example, right now I am in my computer chair and swiveling it back and forth. If I stop myself moments later when I stop thinking about it I will catch myself doing it again.

The anger is by far the worst. Feeling hopeless, anxious, and sad all the time often leads to frustration. Frustration easily leads to anger. It is very angering to be sick all the time, to not be able to do what other people my age are doing, and the most frustrating of them all is how differently I get treated. It's as if people think im going to keel over and die any second, or that I might forget them tomorrow. Which the chances of both are very slim.

I know that it is very hard to understand and to empathize without undergoing the same hell as us Lymies. Sympathizing, however, is one of the worst things a person could do to me. If anything I would love to be treated normally, rather than being felt sorry for.

My Lyme Story

Hello... I'm Lauren. I am 16 years old, a sophomore in High School, and I have Lyme Disease. All my life I have been an outdoorsy person. We have many pictures of me as a child in the woods or out at the barn. Well, in the 6th grade, 5 years ago, I began having symptoms of late stage Lyme Disease. Now, joint pain, muscle pain, fatigue, and depression/anxiety are not major symptoms, so I just shrugged them off and decided not to worry about it. All through middle school these symptoms remained and even worsened. In 8th grade my depression/anxiety got much, much worse. I lost my motivation to do anything. I had always been very active in school and extra-curricular activities both, my grades rarely dropping below a B, playing basketball, volleyball, riding horses, fourwheelers, hunting... etc. I then lacked the desire to participate in any of these. Unfortunately, things progessively got worse, and fast. My freshman year I did not join the volleyball or basketball team, I barely rode my horses or fourwheelers and all I cared to do was lay around and listen to music. My joint/muscle pain had intensified tremendously and my doctor kept telling me it was just growing pains and it was nothing to worry about. But it was.





The summer between freshman and sophomore year I began having very irregular periods. My doctor gave me birth control and said that should take care of it. Heartburn was only to follow. My doctor then gave me an antacid pill to take once a day for acid reflux and said I should be fine. Shortly after that I started having Mono like symptoms, and was misdiagnosed with mono, at the same doctor visit a rash on my leg was misdiagnosed as ringworm. I had no idea all of these symptoms were from one cause.





The beginning of my sophomore year I joined the cheerleading squad because my friend forced me to. Now, homecoming week for a cheerleader is very stressful. I was dreading the quickly approaching week. When it came I had 5 tests that week, had to make cookies for the football players, and had practice/pep-rally/game every night. With anxiety problems already I was stressed beyond comprehention, when I think about that week it almost makes me cry because of the tremendous amount of stress I had undergone. Friday night was the homecoming game and it went GREAT! We won it in the last 4 seconds, literally, and it was an awesome night. Saturday night was the homecoming dance, I went and had a nice time there as well. However, Sunday morning I went bow hunting in the afternoon and got very confused and scared. I followed my moms advice and went to bed early to get some much needed rest from the long night before. Monday morning I woke up with no knowledge of what day it was how I got where I was or why my mom was waking me up. My memory was completely blank and I was also unable to walk and barely able to sit up in bed. So my mom took me to the Emergency Room where I was misdiagnosed with encephilitis and sent to a neurologist. The next day the neurologist informed me that my problems could only be addressed by a psychiatrist/counselor. Fortunately, I had already been seeing a counselor and had an appointment set up for the following week. When we arrived at her office she took one look at me and said, "She has Lyme." plain and simple. We discussed some of the symptoms of Lyme and she gave us the name and number of her doctor and told us ultimately it was up to us but she felt very strongly that I had Lyme. We got an appointment with her doctor in Columbia, MO at the end of October, about 3 weeks away.





At my doctor visit it was diagnosed as probable Borelliosis (Lyme) and I was sent home with a prescription for doxycycline, ceftin, zithromax, and flagyl. To be used in that order. I used the doxycycline until November and had wonderful results. In December things took a turn for the worst and I ended up in the mental health unit of my local hospital.



Shortly after being released from the hospital I began taking ceftin. It did not help me in any way. I slowly got worse. So after a month of moving backwards I started taking zithromax. I took 2 pills and began having seizures. It would begin with vertigo like symptoms, dizzyness, nausea, upset stomach...etc. I would then begin having the convulsions, uncontrollable twitches and jerking movements. I was completely aware during the entire thing and it was very very uncomfortable and scary. The first time it happened my mom took me to the Emergency Room where the doctor told me I couldn't have Lyme because I was not diagnosed by a neurologist. This was very frustrating and made me very nervous, if I was to get deathly ill there were no doctors in my area that had the slightest idea of what to do with me. After this scare I stopped all antibiotics but continued to take my 40 supplement pills a day. We continued with this until April when I visited my Lyme doctor again. He started me taking progesterone and estrogen horomone replacements in hopes of helping with my moodiness and irritablility.

In May I started having troubles swallowing pills. I stopped taking my supplements for a couple weeks but the pain in my throat soon became unbearable. I was unable to eat or drink anymore. On that Sunday I stopped eating and my pain was completely unbearable in my legs and feet. It felt as if someone was burning through my skin into my bones with super cold air. It felt much like a frost bite only worse. That night I went to the Emergency Room with the hopes of getting pain meds and I.V. fluids. The doctor I got in the E.R. did neither. I walked into the E.R. and had to be wheeled out of it, I was in far worse shape leaving than when I arrived. On the next day I went to my family doctor and she scheduled me to get an upper endoscopy of my throat on Thursday. On Tuesday I went and got I.V. fluids at my family doctor. They had to stick me 7 times with the needle before they got my vein because I was so dehydrated. On Thursday I had the endoscopy done and the next day I was admitted to the hospital to get I.V. fluids and to try to get some food down me. I stayed 5 days in the hospital and had a total of 10 bags of I.V. fluids, and 4 bags of rocephin. I left the hospital the following Tuesday with a prescription for 3 days worth of rocephin at the local hospital. I am currently trying to start I.V. antibiotics at home to hopefully see some noticeable improvement. However, the insurance has other plans for me.

Lyme Disease is an ongoing battle, and I am fully aware that there is a good chance I will be on antibiotics the rest of my life. Hopefully that wont happen and I will eventually be healthy enough to go back to living somewhat normally. Whoever is reading this please please if you find you have been bitten by a tick, go to the doctor and keep requesting to get one round of doxycycline until you get it. If it is caught and treated early it will go away forever. I hope this can help at least one person from going through what I have gone through and will go through!