Diagnosis
Today we have an answer for what seems to be at the root of the medical issues I’ve been struggling with since April. Blood test results indicate exposure to 3 different tick-borne bacteria, including the one which causes Lyme disease.
We were in northern Arizona, the Prescott/Cottonwood/Sedona area, when I started waking up exhausted every morning, no matter how much I slept. Just dragging and tired every day. Kristin pointed out that I would stop breathing sometimes when I sleep. Sounds like sleep apnea? Strange that it would come on suddenly. We pursued treatment for that for several months - no easy thing on the road.
In June, my right ankle swelled up and started to hurt. It looked like a sprain, and we treated it like one for months (again, no easy thing on the road). Then I was treated for gout. The swelling didn’t diminish, though the pain did somewhat.
In August, my left hand swelled up and started to hurt. At this point we realized it was something systemic. Still no doctors had a clue.
Several doctors asked if I remember a bite. I don’t, though based on the timeline, I must have gotten one somewhere in Arizona. Not exactly a hotbed for Lyme, but it turns out that it’s everywhere in the US now.
The Lyme test that I finally took is costly and not covered by insurance, which is one reason why we put it off so long (well, that and no memory of a bite). The state of Lyme treatment is pretty bad in the US healthcare system. I’m very thankful to be connected to a doctor here in Oregon that has been treating it for a long time. His background gave me the confidence to move forward with the test, even if it seemed like a long shot. And sure enough, the shot landed, and it’s Lyme.
My prognosis is 3-12 months of treatment, mostly antibiotics and anti-parasite drugs, along with a handful of supplements to offset the negative effects of so many antibiotics. The good news is, we can pursue treatment on the road - all this stuff can be picked up at nationwide pharmacies or shipped to us wherever we go.
So this means - we can leave! We have a diagnosis and a treatment plan, the plan doesn’t require us to be treated in person, and we have a path forward to me feeling better. Between Lyme and a separate infection back in December 2020, I have spent just 3 months of this entire adventure in good health. But it’s exciting to consider that I could get back there again.
If you spent any amount of time in wild places, take precautions! Lyme is everywhere in the US. Here’s a handout from my doctor’s practice.
