How did I get here?

As I’ve mentioned, I was 12 years old when I was first diagnosed with Lyme disease. One morning I woke up and my left knee was extremely swollen and hot to the touch. I felt achy and overall just not well. I told my mom that I must have gotten hurt playing basketball, which we both know wasn’t true. I was terrified of needles and hated going to the doctors, but after one week of limping around, my mom bribed me into going. A few days later, the doctor left a message on the answering machine saying I had Lyme disease and about 2-3 weeks of antibiotics were called into my pharmacy. I remember just hysterically crying. I didn’t really know what Lyme disease was, all I knew was I had a DISEASE. I knew kids at school were going to make fun of me and stay away from me, even though it isn’t contagious. But I had a disease and that made me weird. Not only that but I was nervous about taking medicine. I never had taken any medicine except in liquid form and was dreading having to take this massive size pill multiple times a day.

After 2 weeks on crutches, my knee finally went back to its normal size, I finished my course of antibiotics and followed up with my doctor. He said I could have had it from anywhere to 6 months- 2 years prior to being diagnosed and the symptom I developed meant it was stage 3 Lyme. However, “Lyme disease wasn’t serious and I had nothing to worry about.” The only repercussions I could experience was possibly needing physical therapy for knee, maybe at 30 or 40 years old.

He had forgotten to mention, because he likely didn’t know — since there is so much we have yet to learn about the lyme-causing bacteria — that I would end up here…three times.

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The picture above is from 2011, where I’m getting one of a series of several PICC lines for IV antibiotics. I had one of the nurses take pictures for two reasons. First, I needed to document for insurance purposes (since Lyme is so controversial and there is no scientific evidence supporting that more than 28 days of antibiotics is beneficial for Lyme patients). Second, I was in college at the time, and were extremely strict about absences, no matter how many doctors notes you had–so I figured a picture would have a bigger impact, showing what I was going through while in school.

Once or twice a week, I had a nurse come to change the dressing of my PICC line and draw blood to make sure there weren’t any infections or complications.

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Unfortunately, things did not go as planned. After 4 months, I developed contact and allergic reaction dermatitis; I now had become allergic to rubbing alcohol and all adhesives (even paper tape) from the constant exposure. I had no choice but to remove the PICC line so I did not develop an infection. I was devastated but convinced I could finish my treatment of IV antibiotics.

I waited for my skin to clear up and gave it time to heal before I had another PICC line put in my opposite arm a month later. To my surprise, I developed the same allergic reaction in only 3 days. Again, I knew it was not worth the risk, and had it removed. I was only able to complete 4 months of my estimated 8 months- 1 year of treatment. However, I did feel better and my lab work did show improvements.

A few months later, my labs showed that I was (once again) positive for Lyme. In fact, I still met the CDC standards for the diagnosis of an active Lyme infection. Many people do not test positive but still have Lyme or post-lyme symptoms. I decided no more antibiotics, which I later found out was a good decision, since they only killed the good bacteria and made my immune system weaker.

Once I somehow made it through school, even though it meant pushing myself to the extreme, causing me to become physically ill and mentally drained…that was it. I was sicker than ever because my body could only compensate for so long.

So here I am, a college graduate, unable to go back to school or have a regular 9-5 job. For a 23-year old, my grandmother always used to tell me she was in better health than I was. Sadly, she was right. She was 90 years old and in better health than I was. This and my inability to do simple, daily tasks made undergoing whole body hyperthermia in Germany a realistic goal to get my life back once and for all.

Sharing what it is like to live with Lyme disease & other chronic illnesses to spread awareness; health advocate;

2 Comments

  1. Hello Stacia – I hope you will come visit The NC Lyme Advocacy website. I’m not sure if you are in North Carolina, but you may have Lyme friends in North Carolina. This NC Lyme Advocacy blog is to keep North Carolinians apprised of advocacy and awareness events happening about Lyme Disease. We hope you will share our blog and we hope that you will find some answers to help clear up your symptoms. Thank you so much for fighting the difficult fight., http://nclymeadvocacy.wordpress.com

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