Tuesday, June 22, 2010

And for my 37th Birthday...

I got a new pair of Lucky Jeans for my birthday. They fit like a glove, which is hard for me to say about jeans. I also got 4 new apple trees, installed. Oh, and I also got lyme disease.

I knew the very moment Claire discovered the tick on my back that it would be a ten second period of my life that I would never forget- how she said in surprise, "Mommy, you have a bug on your back and there is a red ring around it," how the late morning light was shining through the windows in my bathroom, and how the boys were watching me get dressed after my shower, and how we were all going to leave on an airplane to Arizona when I was ready.

I knew in my heart of hearts that it wasn't good. I procured two 100 mg of doxycyclin that day. And five days later my joint pain surfaced. It arrived slowly like a bad cold comes first to your throat. But then it started to get worse, and it didn't take long for me to put two and two together. I didn't wait long and went right to the Health Center on the Saturday after my symptoms showed up. I was given a three week course of antibiotics, which made my symptoms get worse at first, but then completely disappear.

Five days after I was done with my three weeks of "Doxy" my migratory joint and muscle pain resurfaced. I knew what this meant- I hadn't killed the bacteria "Borrelia burgdorferi" off completely. But I needed to get a positive test for Lyme before anyone gave me more antibiotics. This would prove to be my biggest challenge.

I had heard of a doctor who knew of a more "accurate" test. My first and second Western Blot titers came back negative. I went to see said doctor who drew blood that day for a private lab in California. She said it would take three weeks for the test results to come in. It turned out to only be two weeks, but overall I've had to wait four weeks since going off my first round of Doxy. In those four weeks I started to experience major dizziness and an acute feeling that I was going to fall backwards. I started to feel extreme pain in my spine and thoracic area in my back. I was mixing up words and not being able to find the right word in a sentence. I had a few bouts of insomnia, early awakening and definitely felt heightened anxiety and/or depression. None of the symptoms stuck around, everything came and went, including my migratory joint and ligament pain. But overall I felt like I wanted to crawl into a hole and die. After one particularly hard night, I decided to see if they could discover anything at the E.R.

It was definitely not a good decision. Despite having an empathetic nurse (not my husband) who experienced her own hellish symptoms of lyme ten years before, I had four doctors look me over (and even had an MRI on my spine) and all decided that they were 100% sure I didn't have lyme, mostly because my Western Blot tests were negative. I was 100% sure I did have lyme and felt that I was text book with my symptoms and progression. The infectious disease doctor on call knew that I was frightened and scared, but couldn't find any reason to think that my symptoms were directly related to my tick bite (and felt that 3 weeks of Doxy should have been enough to kill any bacteria). I left feeling crazy and was prescribed Valium.

And the waiting and the dizziness and the dizziness and the waiting and the fear of waiting. Everything I read said that the longer you wait for treatment the greater the chance you have of chronic or persistent lyme. I'm still struggling to get rid of those images of me having to be this dizzy for the rest of my waking hours. But Paul Bunyan is trying to keep me hopeful.

And then today....a positive test from IGeneX, a lab not "recognized" by the CDC. But I'm going with it anyway, because I want to fight this fucker as soon as I can and as strong as I can. So here goes another round of the fight. I'm hearing all sorts of stories about how antibiotics don't always work, how I'll need to drink Kale juice for the rest of my days, how I'll have to stop eating meat, stop drinking beer, stop drinking tea, stop. stop. stop. I'm frightened my life has just stopped.

And then today...my wombats arrive with a bag of sunshine and cookies and cards and magazines and strawberries and candles and anti-stress shower gel and lots of love. And then today...my kids arrive home from miniature golf where Claire got a hole in one. And then today...even though parts of me feel like my life is over, it's the friends and family who remind me that this little bug, this dangerous little bug, isn't worth the hopelessness. In fact, it's taught me that there many tiny big people worth fighting for, including myself.

I just have to learn to not search for hope in a four leaf clover lost in a clover patch.

***my brain synapses have not been firing correctly, which is why it's been hard for me to write. I have so needed to portray my desperation and haven't been able to find the words. Things are not working properly yet, but at some point I have to believe they will. If things don't make sense or are spelled incorrectly know that my fight against the spirochete will be over soon. I have to believe it.


  1. Oh no! I had no idea of all this!!! If there is anything I can do, or if you just might like some company let me know! Glad you went ahead with the other test and were so persistent, shows how well you know your own body. Get better and keep me posted...I'll be thinking of you!

  2. keep writing and fighting for all the tiny folks who adore you, incl. yourself, and your hubby:) YOU ARE WORTH IT! STAY POSITIVE MARY, THIS TOO SHALL PASS!
    XXoo your empathetic RN keeping track of you via the internet!

  3. C- your advice to do what makes me happy was the best thing you could have said to me. Thank you so much for being there for me that day!!

  4. I'm always here.....