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Bethany’s Story (Lyme Disease)

Bethany Lyme DiseaseI envy the fortunate people who can live their lives healthy. I’ve forgotten what its like to actually feel healthful and whole. I would be such a different person today if I never had to live life the way I have. But I guess I can say the last time I was healthy was when I was a kid, before we moved to North Carolina. I had a great childhood and always had energy and liveliness when we lived in New Orleans. But it all changed when I got away from the city and played in the woods every day with some neighborhood friends. I don’t remember a time in the beginning where I felt really strong, sickly symptoms after the bite, so it’s hard to tell when I was bitten. But after all, I don’t remember a tick bite OR a bulls-eye rash, either!

I’m used to being sick because I had been ill for years without any type of diagnosis. I’ve kind of just learned to tough it out, or at least try. I would wonder why I was more challenged than the others. I was an unusual teenager, and I couldn’t figure out why. But I knew that ordinary people my age aren’t so weary like me and could walk reasonable distances without having to catch their breath and their heart thumping and having to look for a place to sit down like an old person. And they don’t randomly get ringing high pitch noises in their ears and shakes in their hands. Or little aching, pinching pains in their elbow joints. And they don’t get asked why they look sick or tired all the time, or asked what’s wrong with them by their family because they are too drained of energy and don’t want to walk as far as they do. Normal people don’t look “out of it” most of the time, and they’re not clumsy like me. And for the most part, they don’t get called stupid or slow a lot. And they aren’t so irritable and outcast.

I couldn’t accomplish the simplest of things, and I just sort of felt like a worthless being with no potential. Everyone always asked me what I did with my life and why I didn’t dance or play sports. All I’m really talented at is writing and art. I was never able to play sports like other kids. Although my dad forced me to because he just thought I was too lazy. I had a low self-esteem and low self-confidence through the years. I could rarely be myself. I felt frail and vulnerable. And inferior. But that was “just Bethany” (so I thought).

I had concentration issues in school and would get home every day at 3 and “nap” until 9. Then it was time to go to bed, and I would do it all over again the next day. In class, I would just give up because I never understood or had the motivation to try. I didn’t think I was smart enough.

I wasn’t exactly what you’d call a well-behaved teen. I was rebellious against my parents, and some nights I’d go as far as sneaking out to be with the wrong crowd. I was hungry for attention from the wrong boyfriends that only hurt me more. I was just a young, confused and immature 15-year-old kid.

My dad really knows how to get under my skin, and he would usually bring out a rage in me when he said certain things. I would react in a very abnormal, uncontrollably angry way, but I didn’t know why and neither did my parents. They just thought it was because there was something mentally wrong with me, or I was just a spoiled brat. I wanted some type of release for my frustration. I had friends that self-harmed as their way of coping with their problems, so I thought maybe it would help me when I felt so angry and distressed. I kinda thought I was just troubled and crazy, because well, that’s what people told me. But I needed as much relief from stress as I could get, so I’d just take it out on myself, and it distracted me until the episode of rage subsided. It became something that I did more than once. I couldn’t calm down in any other way, like listening to music or breathing slowly, because I felt like I was LOSING my mind. And the only thing I COULD do was cut. I’d be so worked up, my abs would be sore from breathing so fast and hard. My family would ask me why I looked so unhappy every day and what would make me happy again like that precious, little, joyful, curly blonde baby girl that I used to be.

Since I seemed to be acting so odd, they decided to send me to a group home for troubled teen girls to get therapy. I spent eight long, hardworking, tense and STRESSFUL months in that home. Only to waste time and money and get no answer as to why I acted the way I did.

Sometimes if I walked down some stairs or something, I’d be so out of breath and weak that I’d need to sit somewhere and recuperate. I knew it was a problem and needed to be checked. Time passed, and this overall fatigued feeling wouldn’t stop, so my mom thought maybe it was a thyroid problem. I went to my pediatrician, and they tested me for illnesses that cause fatigue. They decided to throw Lyme in as one of the tests. I was on vacation in summer 2013 when my mom got a call from the pediatrician telling me I have Lyme disease. I was so nervous and scared because I had no knowledge about Lyme and neither did my family. But they went by what the doctor said to do, and that was to take doxycycline for 21 days, and then my Lyme disease would be cleared! Everyone was telling me it’s not serious and that it’s nothing to be too concerned about. So when I got home, my mom started the intensive research about Lyme and chronic Lyme. We eventually decided to visit a Lyme specialist in DC and start treatment. After she inspected me and learned about all my symptoms, she diagnosed me with chronic neurological Lyme. She recommended a brain scan, and when she showed it to my mom, she told her I was “very sick.”

I went into treatment not knowing how intense it was and how much it was going to affect my everyday life. After a few months, I got to the point where I couldn’t swallow another pill. I was discouraged to the point of giving up. I was getting so many strange symptoms and big painful bumps on my lip, and I felt Bell’s palsy starting to take place on the left side of my face, and I was just done. I didn’t feel like I had the potency or ability to do that to my body for so long. I knew I wasn’t as strong of a person as some of the other Lymies that are fighting this battle. Since I’d had Lyme in my body for this long, I didn’t feel like it would ever be treated. And if it was possible, it would take years of precise treatment which I felt was impossible for me. I don’t and have never had enough motivation to do even simple everyday life things. How can I push through treatment with no motivation? After all I was so used to living that way and felt like I was helpless. I had accepted that Lyme was a part of me and maybe it wouldn’t get too much worse and maybe I could deal with toughing it out on my own. I didn’t care anymore. In the back of my head, I thought maybe one day suicide would be my way out of this, when this disease got bad enough to where life was just too difficult for me and wasn’t worth it anymore.

My doctor didn’t quite make it clear that I needed to be weened off of the pill Neurontin. And because of that, I began to have terribly dangerous withdrawals. Neurontin withdrawals, which are similar to alcohol withdrawals. Without even knowing this, I stopped taking Neurontin when I quit the treatment. I began to feel extremely depressed every day at school, and I had constant thoughts of hurting myself and suicide, to where I felt the need to leave the classroom to cry and cut my arms in the bathroom so I wouldn’t cry in class. I knew that I was not in my right mind, and it was scary. I felt so much worse. I didn’t know what was wrong with me. I thought I was insane. I wasn’t thinking about how those razor deep cuts would be permanently scarred on my arm forever to remind me of this awful and dreadful point in my life. It was as if I felt so psychotically numbed that I didn’t even feel the pain as much as I should have. It was very bizarre. But I was so relieved to discover that those deranged thoughts were just withdrawal.

All of a sudden, when the new year started, I noticed a new branch of symptoms that I’d never felt before, and my other symptoms worsened. I was now constantly forgetting where I put things, especially when I was getting ready to go somewhere. And when the non-stop forgetting stressed me out, another new symptom came on. I would start to panic uncontrollably because I was so frustrated that I kept on forgetting where I put what I had JUST had in my hand. If I started sweating a little, it would bring the panic out even more, and make me sweat  to where I wouldn’t be able to dry my hair because the blow dryer heat would make me hot and sweaty. And sometimes the panic would just get so bad that my mom would have to give me a Xanax to calm me down. I just felt like my brain was freaking out.

I always felt perplexed or disoriented like I couldn’t find my way around without help. I’m eighteen and have no license or permit because I’m scared to drive, and I can’t quite find the concentration to pass the first written test at the DMV. I hate when everyone asks me why I don’t have my license because I never know what to say back. Another symptom I began to have was loss in appetite. I always used to eat so much, even out of boredom, but now sometimes I couldn’t swallow one bite of food, even though my stomach was growling. I couldn’t taste the food when I tried to eat it.

I noticed more word reversals when talking and could no longer make sentences make sense as well as I used to. I couldn’t explain myself or my thoughts. I had almost continuous brain fog. My brain just always felt jumbled up. I was and still am pretty much ALWAYS irritable, and it comes out when I talk, so people just think I’m a mean person. I would get so down about all these brain issues that were getting in the way of my life. Lyme affects the primary parts of your body which makes everyday life more challenging. But of course, no one understands that. They just think it’s all in my head. It’s hard for me to even communicate with my brother when he tells me this is all in my head and that I’m blaming my problems on Lyme and that Lyme isn’t really a thing. He says, “I get headaches a lot, too,” and he bet me that if he went to get tested, he would test positive also. But I know for a fact that he wouldn’t, or else he would understand.

My body temperature is off more than it used to be, and my teeth chatter in chills when everyone else is perfectly fine. This happens a lot. I feel the random shooting pains more than usual now also. But body pain wasn’t ever really a big issue. The bacteria just likes my brain a lot more than my joints, I should say. When I’m standing, I always find myself looking for somewhere to sit. My heart thumps a lot faster than when I’m sitting, and my legs feel faint and weak. It just gives me this drained feeling when everyone else is standing just fine.

At times, I felt so emotionally oversensitive, and my Lyme rage became worse to where, as the rage consumed my brain, I would suddenly throw things and shriek or shout at the top of my lungs with almost no deliberation. I feel like I’m going insane when this happens, and almost nothing can calm me down until the episode subsides. During the raging or usually after the rage calms, I get extremely negative thoughts that I can’t make go away. For example, I’ll think about a tree outside that I could hang myself in. I just feel like I’m sick in my head, and life isn’t worth living if this is how I have to live it. I don’t know why, but I get this vibe that I won’t live a full life. Whether because of suicide, or because my brain was in disarray as I took a wrong turn on the road, and I died in a car crash. I feel like I’m gonna die young, like I won’t grow old and die an ordinary death.

I am a marijuana smoker, but there are reasons behind it. I smoke because it quickly aids most of my symptoms, like loss in appetite, head pressure, depression, irritability and panic or rage. Since I have Lyme, I usually have an overall sluggish feeling that marijuana also helps ease. And even if someone stresses me out, I won’t react in an abnormal way because I’m calm and relaxed. I hate that I sometimes rely on marijuana for temporary relief, but it’s the only thing that will give me immediate alleviation. Of course, my brother and others probably think I just use that as an excuse to smoke marijuana, but it really does ease me overall. I wish I had the drive to do long-term antibiotics and all that comes with it. But for now, what I’m doing is trying to figure out different ways for me to calm my symptoms, like essential oils and lots of vitamins and eating right. Maybe I will eventually decide to visit another Lyme doctor and give treatment another try if I feel like I can do it.

My life would be so much different if I had never been infected with this devastating disease. It has made my life so much more troublesome and complicated than what it should have been. And up until last summer, I didn’t even know why this life was so problematic. I would probably be on my way to college right now if I was able to think in class during all those school years, and I would have a car and my license just like everybody else, and of course I would be healthy and functioning. But I’m stuck with no promising way out of this, and all I can do is HOPE for a cure.

Bethany
North Carolina
Submitted 10/06/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Bethany,

    I can relate to a lot of things you go through and have gone through. I am 23 years old. I have been diagnosed with Chronic Fatigue Syndrome by an Endocrinologist, Fibromyalgia by a Rheumotologist, and ADD, Bipolar, Major Depression, and Generalized Anxiety Disorder by a Psychiatrist. While I very well could have CFS and Fibro (which I have accepted), I could be one of the many who have been misdiagnosed. However, a lot of autoimmune disorders have overlapping symptoms. As for the psychiatric stuff, that all could be part of the Fibro, I could be misdiagnosed, I could be correctly diagnosed- who knows? I take medication for all of my mental illnesses. I am constantly trying different medications because most don’t work and when some seem to have even a tiny bit of effect, they stop working after a month. If you ever want to talk about any of this or talk in general, reach out to me @ askaytche@gmail.com

    http://dogmomchic.blogspot.com/

    -Heather

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