Other than the approximately seven days when the antibiotic worked, I was sick in a way that was hard to explain to anyone, and even harder for me to understand or make sense of.  Most of my symptoms changed daily, even hourly.  The only common threads were a slightly sore throat, sometimes a headache, a debilitating weakness, and those fevers that would come and go rapidly.  The rest of my symptoms varied.  Sometimes I felt pain in my muscles, especially on the right side of my body.  During those times, the smallest activity could leave me sore for hours.  Plucking my eyebrows would result in hours of shoulder muscle pain.  Walking from a building to my car would leave my legs sore.  Talking on the phone was even too taxing for my oddly weakened body.

I started getting sick again while I was still on the antibiotic, so I had to go back to the hospital clinic.  The doctor I saw that day refused to consider that my relapse was the same thing.   I had pain in my abdominal organs that day, so he decided I must have a urinary tract infection, even though I had just finished a two week course of antibiotics.  So I peed in a cup, had my arm poked for blood samples, and listened to a doctor tell me absurd things like how my fevers and muscle weakness that made it difficult to move around MUST be a urinary tract infection.

The UTI test came back negative, as did the test for Lyme, but I was still sick and getting more sick.  For the next week I would spend almost every waking moment that I had any energy researching what could be the cause of my strange illness.  I called doctors, specialists, researched tick-borne related illnesses, auto-immune illnesses, ran my symptoms through symptom checker websites, until I was spent for the day.  I learned some stuff I never knew.  The test for Lyme is often negative, in fact it’s negative in over 60% of actual Lyme disease cases.  I also learned that the AG of Connecticut opened an investigation into the governing body of infectious disease because they seemed to be ignoring peer reviewed research in establishing the diagnostic and treatment protocols for Lyme.

Then I got in to see another doctor who said she would be willing to run more tests.  I had my arm poked some more, I described the strange array of symptoms, and the doctor prescribed me another round of the same exact antibiotic for the same period of time.

Now, I’m not a doctor, but I know enough to know that if an antibiotic doesn’t work the first time around on something, it sure as hell isn’t going to work the second time around.  I tried to persuade her to give me a different antibiotic or a higher dose, or a longer period of time.  She was, as most doctors are, good at making me feel like I couldn’t possibly have a clue what I was talking about, and she practically patted me on the head as she shooed me out the door.

All my bloodwork came back “normal”.  No Lupus, no Rheumatoid Arthritis, no Rocky Mountain Spotted Fever, no Lyme, no anything.  I was three days into the antibiotic and STILL sick, and had developed a new symptom.  The feeling that a tight band was wrapped around my lower ribs squeezing ever tighter and tighter.  I would later figure out this symptom was a severe side effect of Doxycycline and landed myself in the ER again where I was told two different things about the cause (and the following day told still two more different things by a pharmacist and the doc I had seen in Boston).   I had no choice but to go off the antibiotic.   Within a few days my breathing was back to normal, and then I promptly caught a cold – germs I probably picked up during all my ER and doctor visits, but the weakness and fevers were gone.

So far I’ve still not had a return of the odd symptoms – oh, except for that heart arrythmia that showed up a few days ago…

With love,