on not knowing I had Lyme

Twenty-five years ago, we bought a farmette north of Pulaski Wisconsin and moved there from Wyoming. I was pregnant and not keen about coming to my then-husband’s home state but  I’d made a practice of following him and wasn’t ready to stop.

After living there a few months, I told a doctor that I was suddenly struggling to find words. I was dismissed in one word: “Stress.” I’d always thought I was healthy. When advancing through the ranks of tae kwon do, I could feel my muscles growing stronger. At home, I was aware that I burned out faster than expected but told myself I was doing a lot. 

I’d journaled off-and-on since I was a teenager, but it became a regular practice after I began serving churches in 2008. At the start of each week, even if only to write, “It’s Sunday so I’m writing,” I put pen to paper. It was in reading old entries that I realized how long I'd been tired. Now to be clear, pastoring was never easy for me. It was mentally consuming and, aware of my own deficiencies, I put in longish hours trying to be the pastor that people needed and expected. But not long before the disease ran over me like a Mack truck (and then back again for good measure) I finally took notice of how often words like “tired,” “worn out,” and “fatigue” were part of the written record. Something beyond my fear of “not being good enough” was a play.

A week before my fiftieth birthday (June 2010), Kay observed a tick embedded on the back of my arm. The ensuing fatigue followed by a bulls-eye rash prompted me to see a doctor who prescribed doxycycline and never suggested that this might not be the end of it. (I’ve written about this before.) Being rather busy I didn’t notice that I didn’t feel fine. Only in hindsight was I able to put things together. I’ll never know which parts are accurate but here's my hypothesis:

I had an acute Borrelia infection (Lyme) in 2010 but since ticks were a regular part of my life growing up this probably wasn’t my first encounter with the bacteria. I was likely exposed to that and/or other tick-borne infections as a child, and then again on moving to Wisconsin.

Two years after moving to Wisconsin, my left jaw froze. I couldn’t open my mouth enough to insert a finger between my teeth. (Singers notice such things.) Eating was painful so I stuck to soft vegetables for months until the muscles relaxed some. The pain continued; the jaw always cracking and grinding like sandpaper. Nothing helped so I assumed I’d have this for life. Until… three weeks ago when out of the blue my jaw was okay. Nothing had changed save that I'm a year into my Lyme treatment (and random symptoms have eased along the way) and had in February begun treating for mycoplasma.

I read the above and think, boring. I've laid this out hoping to convince you to take tick-borne illness seriously. Tests give lots of false negatives. The CDC doesn’t recognize that Lyme isn’t cured with a run of antibiotics, but many thousands know differently.

• One can get a borrelia-laced tick bite anywhere1
• in the woods
• in a city
• at the beach or 
• in their own yard (where I got mine in 2010).
• Like its cousin Syphilis, Lyme is known as a “great imitator.”
• Symptoms vary with the individual and can include: fatigue, brain fog, migraines, encephalitis, joint pain, balance or vertigo issues, heart problems, vision problems, tinnitus...
• People with Lyme are frequently diagnosed with MS, Parkinson's, or other autoimmune diseases before getting a correct diagnosis.
• The bacteria is present in blood as well as semen, vaginal secretions, and urine.
• Lyme has been found in every continent and in every U.S. state.
• Ticks carry Lyme
• So do mites, mosquitoes, and biting flies.
• Animal reservoirs include mice and deer, and also 
• desert tortoises, lizards,
• cows, horses, dogs, 
• raccoons, and songbirds. “You don’t have a bird feeder, do you?”2
• Nearly half a million are diagnosed and treated for Lyme disease in the U.S. annually.3 The number infected is likely much higher.
• A course of antibiotics will effectively cure 70-95% of them, depending on the study and antibiotic.
• This means it doesn't work for a lot of people!
• This also doesn't consider that up to 35% who relapse. 
• 476,000 in the U.S. are diagnosed and treated for Lyme disease. Diagnosed.
• This number doesn’t include those who don’t seek treatment because no one suggests that. 
• Most people who find themselves with Lyme never saw a tick. 
• Nymphs are the size of poppy seeds. 
• A lot of Lyme research is not making it into the hands of doctors and medical schools.

I don't mean to scare anyone but we need to get the word out. Someone wrote on the “Lyme Disease Support and Wellness” Facebook group page last year of telling her doctor she was thankful she didn't have cancer. The doctor looked at her oddly, “With cancer, there's an ending. You get better or you die.” For many, Lyme is a forever diagnosis. We work toward wellness while recognizing that any little thing can trigger a relapse.

Please, take your risk seriously. Get educated. And don't dismiss anyone else's journey.

1  To confirm information presented here, please consult the first chapters of Stephen Harrod Buhner, Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses, Second Edition, Raven Press, 2015 where he presents information from some of his extensive research.

2  Buhner's refrain in the first chapters of Healing Lyme, 2nd edition,

3  "How many people get Lyme disease?" https://www.cdc.gov/lyme/stats/humancases.html, last viewed on March 21, 2022.