Today begins the story that I couldn’t (and wouldn’t) openly share with the whole wide internet because it isn’t my story to tell. With permission and careful rendering, I’m coming out with a chapter that has been stuck in edits for almost a year.
Last fall, as part of my comprehensive lyme treatment, my doctor insisted that she also needed to test Jim for Lyme. (My personal version of lyme had bypassed my joints and tendons to take up residence in my liver and kidneys. I didn’t understand why testing Jim, who had no issues with his liver or kidneys, could make a difference to my treatment plan.) And then she explained that couples can “share” lyme. You know… the way couples share things.
Well, crap. And that’s all I’ve got to say about that. For now. Until we warn our kids and set up some therapy appointments.
When I approached Jim about being tested for Lyme, he was relieved to turn the research over to the experts. (In our case, the experts are “LLMD’s” – Lyme Literate Medical Doctors.) He had been scouring the internet on his own for answers for what seemed to be constant, but separate issues for over a year.
When we finally added it up, it seemed extreme to us that in the span of one year, he could develop hypoglycemia, frequent episodes of gout, recurrent heartburn, a strange, creaking neck pain, but most disturbingly, issues with word recall. He was repeatedly reassured by his medical team that these were isolated issues, each with an independent explanation.
Jim and I knew before the lab results were in that we had an answer.
Jim had Lyme disease. As I wrote in May, Lyme doesn’t just give you one “disease.” It’s not like strep throat where a course of antibiotics knocks it out. Once you get a positive Lyme diagnosis, you have to start looking for the possibility of hundreds of different infections you could have been given, triage the most severe ones, and commence treatment. I remember calling him when the tests came in, and it felt like I was giving him good news. How twisted is that?
Like me (and over 70% of lyme patients) Jim cannot recall having a tick bite. He never had a bulls-eye rash, because only 30% of people in the U.S. actually have that rash. But the number of symptoms he experienced suggest that he had been living with Lyme for at least three years. Wanna take a guess as to when my health really began to decline?
A diagnosis of Lyme is never good news. But finally having an explanation for a set of symptoms that makes question your own state of mind offers a giant “TOLD YOU SO” to practitioners who patted you on the head and sent you off with Tums.
For us, relief and grief were knit together, with shock and fear intertwined. How were we to write the next chapter of our future while fighting a disease that threatened our future? And if you go back and re-read last year’s blogs with this year’s knowledge, our struggle (and erratic posting) makes a lot more sense. Stupid hindsight, instigator of regrets.
The next chapter is not my story….but because nine people have been tested and diagnosed as a result of this erratic little blog, Jim has bravely offered to tell his story – because it is very different from mine. And because we want to shout to the world the fact that no lyme diagnosis is the same.
We were devastated to learn that you can have two people in the same house at the same time suffering vastly different symptoms, caused by the same enemy.
And by now you can probably tell that I’ve moved from embracing to being pissed. I promise I’ll try again. But now, I will turn this blog over to my very own Iron Man.