This article came out Friday in the Mercury News: Learning about Lyme disease the hard way.
The short version is that Bart, the 69-year-old man featured in the article was diagnosed with Lou Gehrig's disease. His family was told he had two months to live, to take him home, and to call a hospice. Then his son remembered a tick bite he got six years ago near a percolation pond in Morgan Hill. They got another opinion. You can imagine the rest. The important thing for Bart is that right now he's on antibiotics and his family says he's improving.
I’m glad this article was published in a mainstream newspaper. We need this kind of awareness. Sadly, though Bart’s story is not unique, as the story implies. If you read Cure Unknown or see the film Under Our Skin you'll be inundated by similar stories of misdiagnosis.
You might have read a version of my story before. I suffered with undiagnosed Lyme for 20 years--was diagnosed with fibromyalgia, chronic pain syndrome, depression, Hashimotos, food allergies, and more. After my second child was born, all my systems crashed. Although I was diagnosed with Psoriatic Arthritis in 10/08, I had symptoms way beyond that and for a period believed it was actually MS. I was told to stop breastfeeding my five-month old baby so I could go on methotrexate--a chemo drug--indefinitely.
Not only did I find that prospect daunting, but the diagnosis didn't address all my symptoms (panic attacks, seizures, memory loss, reduced cognitive function, joint and muscle pain, eye infections, blurred vision, sore throat, jaw pain, digestive issues, chest pain, shortness of breath, tingling in my shoulders, hands, and feet, psoriasis and more) and caring for my two kids was nearly impossible. It sounds so crazy, you probably don't believe me. Fortunately, for me and my family's sake I found a doctor who DID believe me and dug deeper, did more tests, and I came out positive for Lyme and multiple co-infections (Bartonella, Babesia, Mycoplasma, and more).
It's been a year of oral antibiotics and I just recently had a PICC line put in for IV Rocephin. And I'm improving. As my primary care physician said (who originally was on board with the Psoriatic Arthritis diagnosis), I am a completely different person now than I was a year ago. She is amazed at my recovery and even asked for some names of LLMDs. If I had done the methotrexate, I would have only gotten sicker, since it's an immune suppressant and would have let the infection take an even stronger hold and then who knows what kind of diagnosis they would have come up with next.
I'm thankful beyond measure for my LLMD, my supportive family, and my own intuition and perseverance to find the right diagnosis and treatment. BUT, I continue to be pissed off at the IDSA, insurance companies, and corrupt or clueless doctors that continue to bleep with people's lives. The other four SpiroChicks have not the same, but eerily similar stories. And if you visit the Mercury News site and read the comments posted at the end of the article you'll read even more of the same stories about people suffering from Lyme.
No, Bart's story is not unique, and Lyme disease is NOT RARE. While I send my healing thoughts and prayers for Bart's recovery, I hope this story continues to ignite the fire in all of us Lymies to continue the fight for awareness, funding, and legislation to protect doctors and patients. And I really hope Patty Fisher does a more in-depth story about the prevalence and real risks of Lyme in the Bay Area.