Velvet Verbosity

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,

It was the first week of April and I was busy.  Busy with a flooded basement, a job, two teenagers, and the what-nots of life.   On this particular evening, I was going up and down the basement stairs dumping buckets of water I had sucked up with the shop-vac.  I noticed I had an unusual pain in my right thigh, the kind of pain that made me think, “that’s weird, did I pull a muscle or something”, but not the kind of pain that stopped me from what I was doing.  That night I had a fitful sleep interrupted by the itching and pain in my right thigh, but I was too exhausted and never conscious enough to sit up and investigate.  I wouldn’t find the tick until the next morning when I was getting dressed and my hand brushed against the little parasite attached to the back of my thigh as I distractedly scratched at the itchy area.

Let me interrupt this story to tell you what torture is.  Torture is knowing that something is attached to you that doesn’t belong there and having to put your pants on OVER that parasitic something and DRIVE to the pharmacy with that thing STILL attached underneath your clothing to buy tweezers and tea tree oil and then STAND IN LINE behind all the elderlies who are the only people at the pharmacy at such an early hour.  Yes, if you want to make me confess to any crime then just HINT at making me repeat this scenario.  No way in hell I would make it through intact a second time round.

I applied the tea tree oil, waited several secons, and then pulled the tick off without too much event.  I placed the tick on a tissue and carefully inspected it, not unlike a new mother, counting legs and ensuring all parts were there and in order.  Once satisfied, I wrapped it up in the tissue and put the tissue in a Ziploc.

My whole right leg was sore from just below the knee up to my upper thigh.  The back of my leg was on fire and punctuated visually by a sizable fiery red circle surrounding where the tick had been.  I couldn’t help wonder at how something so tiny could wreak such havoc on an organism thousands of times its size.  I also couldn’t help being petrified.  It was terrifyingly clear that my body was reacting in a big way to a very small invasion.

I was later sufficiently calmed down by a talk with someone who had experience with Lyme, so I flushed the tick and went on with my day.  And the next day, and the day after that I went on with life, by which time the swelling in my leg had diminished.  I mostly forgot about the tick bite until a few days later when I came down with a fever out of the blue and with virtually no other symptoms except a weird fatigue that was more like weakness than tiredness.  I also had a bit of a sore neck, and a sore throat.  I was burning up, and by coincidence had lunch with a friend and his brother. The brother had been diagnosed with Lyme two years prior and spent a long, expensive and exhausting battle fighting his Lyme.  He told me I needed to go to the doc stat, and he made no apologies for being harsh with me in his recommendations.

I didn’t have a doctor of my own since I hadn’t needed one in years and I was starting to feel so sick I decided to go to the ER.  The doctor I saw didn’t feel a Lyme test would show anything conclusive since it was so early, but the symptoms were sufficient enough that he wanted to put me on antibiotics.  He prescribed two weeks of Doxycycline.  Over the next few days before the antibiotic kicked in I woud spike sudden fevers that left me extremely weak.  Then the antibiotic seemed to start taking effect…

…to be continued…

With love,

The saga is long and, including last night, I have racked up 5 ER visits in a month.  That has to be some kind of record.  The good news is that I think I’m finally getting better.  I will be back with a bona fide update by the weekend.  I have lots of stories to tell and I’ve missed you all!