Lyme Disease: Episode I - Why Couldn't I Just Catch A Cold?

[Opening Crawl]

A long time ago, in a suburb of New York City…

LYME DISEASE

Episode 1

WHY COULDN’T I JUST CATCH A COLD?

It is an internal period of unrest for Julie as undetected Lyme disease bacteria is invading various parts of her body causing joint pain/swelling, lack of energy, trouble focusing, poor memory, rage and blurry vision.

Little do Julie’s parents know that hormone imbalance is not fully accountable for her teenage attitude problem; a much darker issue has secretly been constructing a powerful empire of bacteria that are slowly wreaking havoc on her being and behavior.

Meanwhile with the help of an infectious disease doctor a powerful IV drug has been dispatched in an attempt to drive the bacteria out of its hiding place and wipe it out forever…

[Camera tilts down through space and focuses on a house in Cross River, NY]

“Julie, please take the garbage out,” to which I replied “Okay.”

5 Minutes Later

“Julie, come on, take the garbage out,” to which I replied “Okay, in a second.”

10 Minutes Later

“JULIE… TAKE THE GARBAGE OUT,” to which I replied “SHUT UP!!! No need to yell at me, just ask nicely and I’ll do it”.

It was 1994, I was a senior in high school, and I couldn’t remember what my mom was asking me, or why I was yelling at her. Irrational, irritable, short fuse, frustration; Lyme rage or typical teen rage? I think I possessed the perfect balance of both. 

In previous posts, I have talked about how Lyme disease bacteria are sneaky and can go undetected by mimicking other ailments/diseases. My joint pain and inflammation was attributed to tendonitis from over use. I swam competitively from the time I was five years old, and had no shortage of knee, shoulder and neck issues leading up to my Lyme disease diagnosis. It was the memory lapses, lack of energy and a vision problem that seemed to develop overnight that landed me in the doctor’s office. 

Before I finished listing my symptoms the doctor told me I had Lyme disease, and judging by the neurological issues I was experiencing, I had been living with it for quite some time. We discussed the fact that just because I never saw any ticks on my body or developed the tell-tale Lyme disease rash that the rest of my family and half of my friends I grew up with developed when they got Lyme disease, didn’t mean I didn’t have Lyme disease.  Blood work was drawn, and I left the doctor’s office with a prescription for Doxycycline. A few days later my Lyme disease test came back negative. I was told to continue the treatment for Lyme disease because the tests were not always accurate (not much has changed in regards to Lyme testing in the past 17 years). 

After a few weeks of treatment the doctor was not pleased with my progress and wanted to prescribe a one month course of IV medication. Without a positive Lyme disease test the medication wouldn't have been covered by my health insurance. My blood was drawn two additional times, and then sent to two different labs to be analyzed; one test came back negative, and one test came back “barely positive”. Shortly after the positive result was received, an intravenous catheter was placed in my right arm, and I administered my own medication when I was not at school. How bad ass is that?

I don’t know about you guys, but I hate needles, I hate IV’s and I hate having tubes hanging out of my arms. I am well versed in the emergency room visits where IV’s have been necessary; so this is not an exaggeration. I can never relax my arm, I always have to have it pointing out straight away from my body with my palm open toward the ceiling which causes my shoulder to hurt, but I never want to set my arm down on the bed or across my own body because it feels weird and uncomfortable. I know some of you are nodding in agreement right now. 

Imagine having an intravenous catheter in your arm for a month. I couldn’t sleep well because my arm was throbbing and sore, and I could never find a comfortable position. I couldn’t get the catheter wet, so I became an expert at showering with my arm taped up in plastic. I couldn’t swim, but that didn’t stop me from weight training with an ace bandage wrapped around the catheter so it wouldn't get knocked out of my arm. The weight training led to a couple of vein collapsing incidents, which led to the catheter having to be moved to various locations along my hand and arm, which led to bruising and egg-sized lumps scattered about. Why yes, it looked like I was a junky. Why didn’t I just take a month off from physical activity and let the medicine work its magic? The doctor never told me I had to rest, truth be told, he cleared me for weight lifting. Since swimmers do not get their broad shoulders from sitting on the couch and watching IV medication drip out of a bag into their veins, resting never crossed my mind. 

After what seemed like the longest month ever, the catheter was removed from my arm, and I felt great. I had responded well to the treatment and was told I was better. By the time I left for Washington DC to attend college in late August of 1995, my miserable Lyme disease experience was the furthest thing from my mind. 

My Lyme disease came out of remission my junior year of college. If I knew then what I know now, I would have realized the “chronic tendonitis” diagnosis in my shoulders and neck, which knocked me out of swimming for a season, was actually inflammation from Lyme disease... and I would have gotten treated for it again.