Origin Story
How I got infected with Borrelia afzelii, and how I figured it out
Baseball!
In the summer of 2009 I returned to playing baseball for the first time since high school, in a 48+ league — that is, players had to be at least 48 years old. I’d been playing softball exclusively for over thirty years and it was my first year of eligibility for 50+ senior softball, but this season I was focused on baseball.1
Midway through the season I was playing really well: on the leaderboard in every offensive category — tied for the lead in homeruns … with zero! — and catching everything in sight in centerfield (and beyond).
July 7, 2009. I started my pregame warmup feeling great. From my LiveJournal:
"best I've felt in years."
Mystery illness
Walking back to the field from the port-a-potty, I started to feel tired. Within seconds, my arms and legs felt like jelly. I felt “flushed”. My joints, especially my knees, felt achy.
I led off our half of the first inning with a single, then tried to steal second. Out by a mile! A month earlier I’d just barely been caught stealing despite only taking a very short leadoff and getting a poor ‘jump’. Since then, I’d been paying better attention to the pitcher and was now leading the league in stolen bases.
That night I had very mild chest congestion and occasionally coughed up clear phlegm. I wasn’t too concerned about coughing up phlegm since I often do that while healthy.
The next day I had to stop a workout with my personal trainer because I couldn’t work hard enough to get my heart rate to even 75% of my usual maximum of 180 beats per minute. My top sprint speed was 25% slower than it had been the previous session — e.g., about 7 seconds for a 40 yard dash instead of 5.5.
We played our next game five days later. I was still sluggish and got caught stealing again.
“I was ... very weak from a strange illness — almost no other symptoms except mild chest congestion ...”
Somehow I went 4 for 4 — the last one a walk-off single — but I ran into another out on the bases and failed to catch a couple of balls that I should have.
Doctors
My wife Gretchen had to see her doctor that week and I accompanied her. At the end of Gretchen’s appointment I reported my symptoms and asked the doctor for her opinion. She recommended waiting a couple more weeks to see if I recovered.
Two weeks later — with no improvement — I saw my primary care physician. Several tests, nothing conclusive. He prescribed Zithromax (azithromycin).
I was pretty sure there was more going on and began searching for someone more helpful. Gretchen rejected my first candidate as too crazy. We settled on a functional medicine M.D. I found in the American College for Advancement in Medicine directory. Two weeks after that I had the first visit of my life with an integrative, rather than conventional, physician. He ordered several more lab tests.
Results: positive for mycoplasma (“walking”) pneumonia and extremely high thyroglobulin antibodies (possibly thyroid cancer or Hashimoto’s thyroiditis). Also, two (out of fifteen) Lyme disease markers, below the CDC standard of five for conclusive diagnosis. Further tests suggested ‘adrenal exhaustion’.2
Treatment: three weeks of doxycyclyine, since the zithromax had failed to knock out m. pneumonia, and in case I was also battling Lyme disease; six weeks of rest — nothing more strenuous than walking; nutrient and hormone supplementation for thyroid and adrenal glands.
At this point, I dismissed Lyme disease since I’d never had the bullseye rash (erythema migrans or “EM”),3 and the other illnesses seemed sufficient to account for all of my symptoms. But I went along with my new doctor’s recommendations to take Southern Blot + PCR tests for Lyme disease, which might detect genetic material indicating infection by Borrelia burgdoferi (“Bb”), despite the high cost — not covered by insurance — and some misgivings due to the PCR test’s low sensitivity — i.e., often failing to detect Lyme disease even if present — and doubts about its specificity — for example, I’d read of concerns that positive results were sometimes due to sample contamination at the lab.4
Lyme disease
After returning from a family Christmas trip, there was a message on our answering machine — remember those days! — that my doctor wanted “to start me on something right away.” The PCR test showed plasmid DNA from Bb, with the Lyme disease corroborated by the Southern Blot.
NOW I took the Lyme disease diagnosis seriously and began investigating much more thoroughly.
Reading about Lyme disease on Wikipedia, I noticed that it could also cause Borrelial lymphocytoma (“Bl”), a purplish lump on the ear. I’d had this twice! … But when?
Reviewing my iPhoto album, I found a picture taken on May 22, 2008, during a Boundary Waters trip where my red swollen earlobe was clearly visible!
At the time, I figured it was from a bug bite — which was correct (!) but the bite was ten months ago, not during the canoe trip. I also remembered that this was the first of the two times the swelling had developed. Both times the lesion subsided within a week or so without treatment, ending with a thick black scab that peeled off, leaving behind healthy pink skin.
Borrelia afzelii
Further googling turned up an article stating that Bl typically occurred about six to twelve months after infection, had only been reported in Europe — so due to infection by Borrelia afzelii, rather than the North American Bb sensu stricto — and only in about 2% of cases.5
Aha!
I’d been to Great Britain twice in the previous five years. The main European vector for Lyme disease is the sheep tick, and during both trips I did plenty of hiking through sheep fields.
The six to eighteen month window made the more recent trip — to England’s Lake District in July 2007 — the likely culprit. (Also, it was much warmer in July than it was during the March 2004 trip through Wales, and ticks are much more active at warmer temperatures.)
In fact, it’s almost certain that I was bitten by a sheep tick (and infected by B. afzelii) on July 15 or 17. After our hike to Scafell Pike6 on the 17th ...
... I developed small, clear, occasionally weepy, little blisters on my arm — “pill-shaped” rather than circular. At the time, I thought it might have been an allergic reaction to some plant I scraped.7 When it persisted for over a week after I returned home, and started getting itchy, I finally saw a dermatologist who prescribed prednisone and it cleared up.
In retrospect, this was exactly the wrong treatment because prednisone suppresses the immune system, helping B. afzelii infiltrate my body unchallenged for over two years. (…!)
There is no better feeling than squaring up a baseball with a wood bat!
Adrenal fatigue/exhaustion is still not an accepted mainstream medical diagnosis.
The CDC says (🤪) that EM occurs in as many as 80% of cases ... but I now suspect the frequency of this symptom is below 50%, perhaps well below.
Since then, it appears that, properly handled, PCR test specificity could be 100%.
Unfortunately, I can no longer find a link to that article; here’s a link that resembles what I recall. This time around, I’ve found an article reporting Bl in Mexico City — I guess that’s technically Central rather than North America — and also articles reporting shorter times to Bl development after infection.
The highest ‘mountain’ in England, 978 meters (3209 feet) above sea level.
I still have no idea if these blisters had anything to do with Lyme; I haven’t found any reported association.