My Lyme Disease Journey:
In April 2012 I bought a permanent camper at a campground in Deltaville. I raked leaves and cleared the lot. A couple days later in the shower, I found a tick crawling down my arm. I didn’t know if he bit me or not but now I’m assuming he did. Around the same time, I did have a large pink circle on the back of my leg that I thought was ring worm and treated it as such with antifungal medicine. It eventually cleared up.
Sometime around May 2012, I noticed that I was tired all the time. The feeling of fatigue was almost unbearable. I would wake up from sleeping 12 or so hours, walk to the bathroom and barely make it back to bed due to an overwhelming urge to lie down again. I also had frequent headaches that were sometimes as strong as a migraine. During this time I went to the doctor, I was emotional and unlike myself. I was given medicine for depression.
In September 2012, I was the same as above but also I began to have severe panic attacks that disrupted work and meetings. I would be completely fine one minute and the next I would feel like my throat was constricting, my heart was beating out of my chest and I would break out in a full body sweat. I went to the doctor again and was given something for anxiety. I was tested for thyroid issues among other things. All results were normal except for an increase in white blood count.
October 2012, I was taken off the anxiety medicine as it was only making me feel worse. My blood pressure began to be high at or around 170/80. I had headaches almost every day. I had outbursts of tears, anger and rage. I would cry uncontrollably and sleep and that’s all I would do. I’m normally very patient, calm and it takes a lot to upset or anger me.
November 2012, I began noticing a terrible pain in my left knee all the time that would make it hard to bend or stand up from a sitting position. I also began to notice a sharp stabbing pain in my neck. It would feel like a hot poker was stabbing thru my neck. This was the beginning of months of sharp stabbing pains. I began to wake up in the middle of the night soaking with sweat. I also noticed dizziness when lying down. I would have the feeling of falling every time I would try and lay on my back. I still slept a lot and hardly had energy enough to get out of bed. Nightly stomach cramps began. I would feel my heart beating through my chest when lying down as well.
March 2013, I noticed a weight gain of 20 pounds from the same time the year prior. I went from a weight of 150 in March 2012 that I maintained for years to 170 in March 2013 even though my eating habits didn’t change. I was still tired and depressed all the time. My back pain became worse. It was hard to sit in a chair all day. My lower back began hurting as well and my knee was still hurting all the time. I slept all the time and never once woke up feeling refreshed. I still couldn’t lay flat on my back due to the feeling of falling every time I did. I experienced weakness when lifting and started feeling like it was hard for me to walk or hold myself up. My leg would sometimes give out on me as I was standing still and I would get dizzy feelings occasionally where the room would spin when standing. My mind was cloudy and I couldn’t think straight. Memory started becoming a problem. I was still having nightly and sometimes early morning stomach cramps and daily headaches. My blood pressure was still high and I could still feel my heart “thump” hard throughout the day.
August 2013, I went back to the doctor in tears over my fatigue, pain and emotional issues. I was taken off the previous antidepressant and put on Cymbalta. I was also put on blood pressure medicine as my blood pressure was around 180/90. I was again tested for thyroid issues and other things. All results were normal except for an increase in white blood count again. My weight had increased another 15 pounds. I now weighed 185 despite diets including low carb, Weight Watchers, etc. There were days I didn’t even get out of bed to eat. I didn’t have any energy to get up and even walk for 30 minutes to get exercise. My knee, neck and back still hurt all the time. I also began to experience nightly gasping for air. I would wake up feeling like I forgot to breathe and gasping for air. I was still having hard heart beats that would sometimes wake me from my sleep. I went to a cardiologist and wore a heart monitor for a week. It was at this time I was told I had a heart arrhythmia. My heart would beat normal for a while, then pause and then beat really hard in order to catch up. That was the thump I was feeling. I was told this was normal and that I’d probably had it my whole life and never noticed it. I thought it was strange that I had never felt it for the 30 years prior to that though.
November 2013, I started feeling better emotionally but I still wasn’t “myself”. I went to an orthopedic about my knee and he gave me a shot of steroids which relieved the pain almost instantly. I started getting strange and easy bruising all over, I chalked it up to be all the pain medicine I was taking. I still had back pain and fatigue. I began forcing myself to get up and move. Some days were better than others. After walking or exercise I would be extremely tired afterwards and have to lie down as soon as I stepped foot in my house – I would be drained of all energy for the rest of the day. I was experiencing more night sweats and difficulty remembering things. I noticed that when I would take the stairs to get to my apartment, that I would forget which foot I had just used and try to use the same foot again which would cause me to stumble. I would feel so stupid, how can someone just forget how to walk up stairs? I would also fall into doors when I would go to open them, misjudging the distance from me to the door – I would grab at the door like it was closer than it really was – eventually falling into it. I would feel “off balance” often.
February 2014, I got influenza and was in bed for a week.
March 2014, a follow-up showed a still increase in white blood count but normal levels everywhere else. I was scheduled to see a Hematologist at the end of April. I still had fatigue, mental issues, sharp pains, headaches and night sweats. I noticed I was getting easily confused. I would be driving down the road and suddenly not know where I was or where I was supposed to be going. I would also get dizzy and in pain while driving to the point where one time on the interstate, I went over instructions on what to do if mommy passed out while driving with my son.
April 2014, I got swimmers ear and an inner ear infection and was put on 10 days augmentin twice a day. I expanded this out to 20 days, once a day, because I had the feeling it might help with all my other problems. It was worth a shot anyways. At the end of April I visited the hematologist and my wbc was normal. Night sweats stopped, but I still had episodes of fatigue, stabbing pains and a cloudy brain.
June 2014, Frustrated that I was not getting better - I went back to the doctor with a check list of items to be tested for and a checklist of symptoms I’d experienced – including the more recent symptom of continuous dry, red eyes. I was tested for Cushings, Lupus, Graves, Thyroid issues, etc. This was when I was also tested for Lyme Disease.
July 2014 - I got the results back that I tested positive for Lyme disease, all others were normal. I began taking the antibiotics. The first 2 weeks I seemed to be doing better. Then my hip began to hurt, my neck again, then after about 3 weeks on antibiotic I woke up with flu like symptoms that lasted for a day or two with vomiting and upset stomach. During that time my whole body was shooting with pains and I was having trouble walking on my right leg because my hip hurt so badly. I noticed I lost my knee reflex in that leg. The doctor could hit my knee all over and it wouldn’t flinch or reflex. I finished the first dose of antibiotics and was symptom free except for foggy brain and memory issues for about 2 weeks and then they started again. I was put on a second dose of 3 week antibiotics. After those 3 weeks, I noticed my symptoms begin to disappear almost as suddenly as they began.
July 2015 – It has been a full year since being diagnosed and treated for Lyme Disease. I am happy to report that I am completely symptom free except for occasional memory lapses. I’m not sure if the memory issues are from the Lyme disease or the period of having Lyme as I have a hard time remembering movies I watched or events that occurred during the time that I had Lyme. Life is good now. I have my normal energy levels back. I’m off all medications, even blood pressure medicine which has maintained at about 140/80. I don’t experience any pain in my neck, knee or back anymore. No more headaches, upset stomach, dizziness, night sweats, nightly gasping for air or the feeling of falling when I lay on my back. My overall weight gain topped out at 40 pounds. I’m down 16 lbs now with 24 more to go to be at my normal weight.
I am very cautious when going outside and use Off bug spray on me and my children whenever we are going for a hike, or walk in the woods. I check for ticks and will keep any that we find in case they need to be tested. Lyme disease temporarily turned my life up-side down but it made me so much more alert and appreciative of my health. I try to not eat processed foods or do anything damaging to my body as I know how it feels to live with health issues and I don’t want to ever experience that feeling again. During my whole ordeal, one of the things that bothered me the most was how people treated me like I was a hypochondriac when I was sick. They didn’t believe I had all the symptoms I had, not only the doctors I saw but my friends and family as well. Even after being diagnosed with a positive blood test, friends and family still have a hard time accepting what I went through or not fully understanding the severity of it. Not that I’m fishing for attention because of it but I get frustrated when people hold it against me that during those 2 years I was a different person. Someone they didn’t recognize. I was different because I was sick, not because I was choosing to be this other person that was much moodier and slept all the time. They don’t seem to understand that there were times when I thought I was slowly dying, I would picture my headstone reading “I told you I was sick”. Even looking through this diary of events that led up to my diagnosis – I can tell by the style of my writing how much I struggled with the simplest tasks like speaking my mind, and writing. Things that are much clearer now than they were a year ago. I’m able to write more freely, something I always loved and enjoyed doing.
For the record: Lyme disease is real folks. It can make a person the sickest they’ve ever felt in their entire lives. So many symptoms it’s hard to list them all. If you know someone that may have Lyme disease, go to their house. Check on them, help them to get up and get dressed for work because even the simplest tasks are extremely difficult. Drive them to their doctors appointments even if they refuse because it’s dangerous for them to be driving. Take their illness seriously because it is and some people die from it.
My advice for anyone that is struggling with symptoms similar to Lyme or believe they do have Lyme but haven’t been diagnosed is to not give up. Don’t think for one second that anyone is going to step up and be your hero and save you. You have to do all the work. You have to go to the doctors over and over again. You have to request the tests and keep on requesting tests until a positive result comes back that explains your symptoms. Living with Lyme is no way to live. I know it will be hard but it will also be one of the biggest things you will ever overcome and you will, eventually, as long as you never give up.