Silver Lining: I called the infectious disease doctor that denied me care three times this spring because he didn't get positive test results. I had his cell phone number from years ago and he answered when I called. I was stunned for a second, but quickly got it together and explained that I had in my hands a CDC-worthy positive blood test for a current or new infection of Lyme from Stony Brook University's Lyme Disease Research Lab and challenged him to re-think his protocol. He was actually pretty cool about it, but in response to my statement about getting treatment, he asked with a little sneer in his voice "yeah, but are you getting better?" Irksome man. I said I wasn't getting better yet, but I stopped getting horrifically worse. He softly repeated what I said as if considering it seriously and then became quite inquisitive. I asked if I could send him a copy of the test results and he said he would love to see them and compare them to what he had.
The first time I saw this doctor was in 2002. He didn't believe I still had Lyme then either. I had been on oral antibiotics for 2 1/2 years and he was very stubborn about it all, but I was more so. I kept showing up, pleading my case, refusing to be silenced or go away, and he finally gave me the PICC line (IV antibiotics) in 2003 that changed my life for the better. I also remember that he was horrified when I had a herx from the first dose and felt like I was going to die, and that he backed off the dose and worked me back up to the full amount. Somehow, I expected that we had worked through all of this and it would be different this time, but it was awful when I went to see him in March of this year. He denied my reality over and over again. I went to his office 3 times for various tests and consultations. I felt like I had to bring this back to him, not just to say "I told you so" but to pave the way for better care and attention to the people that come to him after me. It's a very small piece of activism, but important to me. I will admit that I was shaking with adrenaline when I hung up, but don't think it showed in my voice.
I am so very grateful to my doctor in MD who started treating me immediately based on my symptoms and medical history, and I am more grateful than I can ever say to Karen for sharing her resources with me and to Janice for bending the rules for me.
And now the big news, which I'm tucking away down here at the bottom of a long post, because it's a tough one to admit and perhaps fewer readers will make it this far. Yes, I know the reasoning is silly, but it's my brain. I filed for disability days before I got my test results. I am prepared for a long haul but pray for FEGG - fast, easy, gentle, graceful. I am unable to work reliably, even for the simplest tasks like dishes and laundry. Crow has been picking up more and more of the slack at home - like I haven't been able to mow the lawn in over a year now - and we're losing about $1000 a month. This feels like the responsible thing to do and I hope the impact on my mind and health will be manageable with good friends and therapists.
Hopefully, this piece of paper will help soothe the minds and erase any vestiges of doubt from my healthcare providers and help them focus on the best possible treatment for me. More tests for co-infections will start next month.
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