Hi! Welcome to BorreliaEtc, a site about a family’s journey through tick-borne infections while living in Washington State.
Thanks for joining us! You’ll mostly hear from me, Anna Willo Hart, the “BorreliaEtc” patient of this house.
I will turn 38 at the end of the year, but all I’ve known my entire adult life is battling chronic illness. Throughout my childhood (I was born on Long Island in New York State two days before John Lennon was shot) I always had unexplained low immunity.
Oh if I only knew then what I know now… but as my English Nan used to say, if wishes were horses beggars would ride.
We moved out West to WA State in the summer of 1996. In June of 1998, when I was 17 years old, I had finished a year of college along with my last year of high school ~ so I thought I had earned some time for travel, to learn from the School of Hard Knocks, and travel I did: through the Midwest USA, through Ontario, Canada, a train ride through upstate New York and buses to get back to my childhood home of Long Island.
During my time in the Midwest, I was invited on a camping and canoeing trip with Lakota Elders and had the time of my life. My spirituality strengthened, my resolve about helping our planet strengthened (we were canoeing the Wabash River, then the 9th most polluted river in the USA, and tried to educate the local towns we stopped in about taking care of Our Earth), but unfortunately I still had a weak immune system. When I came off the river (my back had started to hurt suddenly, I thought it was the constant canoeing and camping on the ground but danget I was 17! I should have sailed through that, no pun intended) I was on the porch of our host in Indiana and I noticed my legs felt weird when I crossed them.
So I went inside, hiked my skirt up and saw two large bull’s eye rashes growing on my left leg. At the time I asked the locals and this is what I was told:
“Everything ’round here bites and gives rashes, don’t worry about it!”
So I didn’t. Even though I should have recognized that damn rash from health class back in New York! Yet out here in WA, it seemed no one knew about tick-borne infections.
I had the classic presentation of Lyme disease starting with a rash (well, two), developing what seemed like a cold, started to get aches and pains that a teenager should not have… and then the first clue started that something was seriously wrong: constant, daily nausea for 8 months during 1999 and for 6 of those months I woke up every morning at just past 7a having to run down to the bathroom to throw up. Every morning for 6 months straight. It got to the point where I couldn’t keep water down!
I went to over 50 doctors up and down Puget Sound – from general practitioners, to naturopaths, to specialists (neurologists, endocrinologists, ear nose throat, gastroenterologists, and many others) until I ended up in the University of WA’s Medical Center. But even when I had put together the rashes, the wide range of symptoms I was having, the doctors didn’t listen. They just kept saying, “We can’t find anything wrong with your stomach.”
There is woefully little public education on tick-borne infections on the West Coast, and the reason behind that is because doctors and scientists are involved in what we have dubbed the “Lyme Wars” – two schools of thought as to what dangers tick bites can pose.
At 23 years old I moved back in with my parents, Lorraine and Matthew. I was going through a divorce (marital rape, but that’s a story for another time) and could not live by myself. My health problems had multiplied, including scary symptoms like seizures, paralysis, and other neurological troubles among other systemic problems (I have a symptom list three pages long). Thankfully my mother became my official caregiver – but my family was tossed down the rabbit hole of activism for Lyme and tick infections. We enjoy what we do, but no one would choose this life.
So stay tuned, this is just a little introduction, all created from my bed.
Nice to meet you!
Good company in a journey makes the way seem shorter. — Izaak Walton