My story is sadly similar to far too many others living with Chronic Lyme:
My story is ever changing. As I learn more about these illnesses and look back into my past, I find more answers......I will rewrite this, when I have more answers....
I was bitten as a young child, probably while I was off slaying imaginary dragons in golden fields, running down green grassy hills flying kites, or wading through the soggy edges of streams looking for Frog Princes. The days before video games and ipads.
My story is ever changing. As I learn more about these illnesses and look back into my past, I find more answers......I will rewrite this, when I have more answers....
I was bitten as a young child, probably while I was off slaying imaginary dragons in golden fields, running down green grassy hills flying kites, or wading through the soggy edges of streams looking for Frog Princes. The days before video games and ipads.
I was really sick as a child, I had asthma, so it's hard to say exactly what was making me sick – the Lyme or the Asthma. I don’t even remember exactly when I was bitten. I remember I was wearing long pants, so it had to be in the spring, fall, or winter. Yes – ticks can hunt in the winter. The only thing I remember is the rash on my upper leg that I never showed to anyone.
When I was 21 I caught mono from the first guy I kissed in over six months. I was devastated and ended up on strict bed rest for an entire year. My doctor had never seen a case of mono like mine. My throat was covered in thick white gunk, my tonsils and glands were huge, and what was supposed to only be a 3-6 week illness lasted 11 months. I never fully recovered from the mono, but eventually I was able to function enough to hold down a job.
Before and after the mono hit, I was never able to finish a semester in college. I attempted multiple times, each time failing. It was frustrating beyond belief because in high school I graduated with honors and 3 college courses under my belt. But as each year passed, my brain became more and more unable to focus and retain information.
Six years ago I caught a "flu" - my fever spiked to 105 for a week, I was achy and miserable, my throat swelled up and was covered in sores. After that "cold" I was worse and I began "catching colds" every month or so. I didn't think to journal my symptoms or keep a log specifically for my health, but I did mention the colds in my daily journal. I know that is when my lyme and probably the babesia "woke up" again.
My doctor ran blood work after that cold and found out I was dangerously anemic - my iron stores were at 6, my iron levels were worse. It took four years of iron supplements to reach a low-normal level.
While waiting for my iron levels to rise, we began testing everything, trying to figure out what was wrong. Just about every test came back normal. But the reality was: I was getting sicker.
I was isolating myself. The energy I should have had as a young adult, was nonexistent. I would go to work then go home and go straight to bed. I lost all of my friends - none of them understanding what was wrong with me. All of them telling me I was "just depressed" and to "snap out of it", that "everyone is tired".
I was in pain all the time. Horrible pain. My feet felt like I was walking on hot coals each morning, but I never said a word. I told myself I had bad shoes, and so invested in “better” more expensive ones. When those didn’t help I told myself I was walking too much. When the pain in my joints would flare, I’d tell myself I was getting older – at the ripe old age of 24, I was “getting older”! I told myself aches and pains were just a part of life, so suck it up. I never mentioned any of it to my doctor.
Then three years ago I had a break down. I quit my job and knew that I had to figure out what was wrong or I wouldn't survive. I had been bouncing around jobs for half a year, not able to stay put anywhere, constantly paranoid and anxious. In my heart I knew something was wrong, but I didn’t know what or where to look. I thought the “something wrong” was my job or my apartment or my routine.
My pain was getting worse, my exhaustion was overwhelming. I couldn’t climb the stairs to my 3rd floor apartment anymore. The thought of having to walk up them brought me to tears. This aggravated me to no end – because I was the girl who hiked for hours every weekend, practiced power yoga for 2 hours and walked 4 miles every day. I ended up moving home. For the first month I did nothing but sleep. Then the search for what was wrong continued.
My doctor was getting ready to tell me I needed to ask my therapist for a psychiatrist referral, because she was beginning to think it was "all in my head".... She is a great doctor and really did listen to me, test me for everything, and try to treat what she could symptomatically.
I arrived that day in terrible condition. I broke down and told her we had to figure out what was wrong, or I would die by the following year. I knew I was sick, and I knew it was serious. That day I also complained of nerve pain (a pain I had had for years but didn't mention), and she jokingly brought up lyme disease. I went home and read about it, and knew that was it. We tested for it the next week.
When the initial tests came back - they were negative. By that time I had spent the week buried in research, and learned how unreliable testing is for these illnesses. So I came ready to prove why I had Lyme Disease. I knew in my gut that this was the answer. The diagnoses’ of Chronic Fatigue, Fibromyalgia, and all the other labels thrown at me – they snagged one or two of the things going on, but not all of them. Lyme Disease was the only one that every single symptom could fit into. I knew it was right the moment I read a story and saw a photo of a rash. The memory of my own rash came back, and I knew….
So I had gone back through years of daily journals. I was and am an avid journal keeper. I was able to go back to the year 2000 and dig up symptoms I had written about, "colds", etc. As I pulled each bit of information out of my writing - I was finding patterns. When my appointment came, I was able to give my doctor 15 pages of notes, including a detailed timeline of my medical history.
Then three years ago I had a break down. I quit my job and knew that I had to figure out what was wrong or I wouldn't survive. I had been bouncing around jobs for half a year, not able to stay put anywhere, constantly paranoid and anxious. In my heart I knew something was wrong, but I didn’t know what or where to look. I thought the “something wrong” was my job or my apartment or my routine.
My pain was getting worse, my exhaustion was overwhelming. I couldn’t climb the stairs to my 3rd floor apartment anymore. The thought of having to walk up them brought me to tears. This aggravated me to no end – because I was the girl who hiked for hours every weekend, practiced power yoga for 2 hours and walked 4 miles every day. I ended up moving home. For the first month I did nothing but sleep. Then the search for what was wrong continued.
My doctor was getting ready to tell me I needed to ask my therapist for a psychiatrist referral, because she was beginning to think it was "all in my head".... She is a great doctor and really did listen to me, test me for everything, and try to treat what she could symptomatically.
I arrived that day in terrible condition. I broke down and told her we had to figure out what was wrong, or I would die by the following year. I knew I was sick, and I knew it was serious. That day I also complained of nerve pain (a pain I had had for years but didn't mention), and she jokingly brought up lyme disease. I went home and read about it, and knew that was it. We tested for it the next week.
When the initial tests came back - they were negative. By that time I had spent the week buried in research, and learned how unreliable testing is for these illnesses. So I came ready to prove why I had Lyme Disease. I knew in my gut that this was the answer. The diagnoses’ of Chronic Fatigue, Fibromyalgia, and all the other labels thrown at me – they snagged one or two of the things going on, but not all of them. Lyme Disease was the only one that every single symptom could fit into. I knew it was right the moment I read a story and saw a photo of a rash. The memory of my own rash came back, and I knew….
So I had gone back through years of daily journals. I was and am an avid journal keeper. I was able to go back to the year 2000 and dig up symptoms I had written about, "colds", etc. As I pulled each bit of information out of my writing - I was finding patterns. When my appointment came, I was able to give my doctor 15 pages of notes, including a detailed timeline of my medical history.
When I read them to her, I broke down crying. She asked me what I was crying about. I answered, "I used to be so much more." It was all I could say....
I used to be so much more - energetic, lively, happy. Even while I was still sick - in the beginning - I was still so much more then what I had become.
I used to be so much more - energetic, lively, happy. Even while I was still sick - in the beginning - I was still so much more then what I had become.
After that appointment we set up more testing - testing sent to the specialty labs. While waiting we started a "trial" treatment of Doxycycline. By the time the tests came back, it didn't matter. I had herxed, my doctor was comfortable with a clinical diagnosis, and so I was diagnosed with Lyme, and as time went on, co-infections.
I have Lyme Disease... however, I prefer the label: Multi-Systemic Infectious Diseases Syndrome (MSIDS) that started surfacing at ILADS this past year. Because I have multiple chronic infections - not just Lyme.
I live with my parents who support me, who pay for all my treatment. At a time when I should have a solid career and be starting a family - I am completely dependent on my parents.
I have no friends, no significant others. I have learned the isolation of this illness far too well. I lost all of my friends before diagnosis, and it is much too difficult to make new friends during treatment.
After diagnosis I went through a really rough time. Getting a diagnosis was a relief. Finally I had a name for what was wrong with me, and finally we could do something about it. However, the more and more I learned about Chronic Lyme, the more discouraged and depressed I became. The first year was very hard. I went through a long mourning phase. I was depressed and angry over all this illness has stolen from me, and all it will continue to steal. I still have moments of grieving, but they are just that: moments.
I try to keep my head up, keep my thoughts positive. I practice yoga daily. Even when I can't get out of bed, I practice yoga. It helps me recenter and refocus. It helps me be present. Most importantly - It reconnects me to my spirituality, to God. And that has been a vital piece of my treatment and healing.
This road is long and it is hard. It is not for the faint of heart, that's for sure! But every single person I've met with Lyme - be it a veteran survivor or a newly diagnosed - they are strong. They may not always feel it - I don't always feel it - but the strength is there, we are all fighters.
