My Lyme Disease Ailments

Here’s my first stab at compiling various things I’ve had trouble with since getting Lyme disease. Roughly chronological for now. Some categories: (1) cognition, (2) connective tissue, (3) respiratory.

One thing I just noticed: a lot of the problems have been on the left side of my body … I wonder if that’s the case in my brain, too!

Not all are directly caused by Lyme disease, and some may be completely unrelated. I’ve highlighted the more interesting/significant items.

Mid-July through early August 2007. Small, clear, occasionally weepy, pill-shaped blisters on my arm. I think I got the term ‘pill-shaped’ from my dermatologist (who passed away four years after he treated me, age 91). He was the only dermatologist I could get an appointment with on short notice; in the process of trying to find a dermatologist, I got the impression that most of them focus on non-urgent cosmetic issues and can book way out in advance.

Wednesday July 25 2007. I have a record of a doctor’s appointment (“General Internal Medicine”), but I don’t remember what for! Including this because the timing is intriguing.

August 2007 through mid-November 2022. Impaired cognitive function.

All the way back to when I was a kid studying math, I would have a tangible sensation that I knew how to prove a result before I was conscious of all of the details. Prior to getting infected with Borrelia afzelii I would then almost invariably correctly complete that work. This pattern of preliminary sensation followed by correct completion eventually extended to computer programming.

Since Lyme, this sensation has been largely incorrect except for trivial problems. I work on an idea and hit an unforeseen roadblock, or worse still, complete work that turns out much later to be wrong.¹ This extends beyond math and programming to everyday decisions and interactions. I’ve been thinking more clearly since last November (2022), but only time will tell if this time it will stick. More on this below in ‘brain fog’.

Late May 2008. First Borrelial lymphocytoma, on my left earlobe. I don’t recall the timing of my second lymphocytoma, or which ear it affected. Probably six to twelve months later.

Tuesday January 6, 2009. Soreness in my left testicle, which turned out to be a recurrence of inflammation of a (calcified?) cyst. This flareup may or may not have been Lyme disease related; certainly the first time this occurred was not Lyme related since it was many years before.

May 2009 through Spring 2010. Reduced throwing velocity. I’ve never had a cannon, but I’ve had respectable speed with good accuracy.² At a pre-season indoor baseball practice I was a bit surprised that I was only registering low 60s (mph) on my radar gun, as were some of my teammates who clocked higher but hadn’t been able to duplicate my clothesline throws from centerfield to home plate and third base in a previous outdoor practice. At the time, I figured my flat trajectory was due to getting tight backspin, thus giving an illusion of greater velocity, but perhaps I was already getting weaker.

Student’s elbow (see below) sidelined me completely, but even after I recovered from that, my shoulders became so arthritic that I couldn’t even lob the ball with a proper throwing motion. After weeks of conventional physical therapy, I managed to pass a range of motion test just as my insurance coverage ended; my therapists said they had done everything they could. I was maxing out at 39mph!

I’ll write more about throwing in the future.

Tuesday July 7, 2009. Quick onset of fatigue, arms and legs felt like jelly, ‘flushed’, achy joints, especially knees. Very mild chest congestion. This was when I realized something was wrong.

Mid-July 2009. Bone bruise just above my left knee (femur). Diagnosed via MRI in September 2009. This took several months to heal.

August 2009. Baker’s cyst behind left knee, which ruptured and subsided. Detected via MRI in September 2009, at which time it had pretty much healed.

September to November 2009. Student’s elbow — a form of bursitis in which the fluid sack cushioning my left elbow swelled up to the size of a tennis ball. My doctor drained it and it didn’t recur.³ Almost certainly an excess inflammatory response related to Lyme disease.

In December I figured out the proximal cause: while cleaning our 95 gallon aquarium — acquired in November 2007 — I noticed that some cartilage around my left elbow would roll a bit while I poured five-gallon buckets of water. I recalled this happening in the past, but it was only a minor irritation until the September tank cleaning.

July 2009 through, intermittently, Halloween 2017. Extended, mild respiratory illnesses. The common cold lasts seven to ten days, right? During this period, it typically took me two to three weeks to recover from mild colds. One slightly more severe respiratory illness lasted nearly seven weeks from late February to early April 2011. The last of these lengthy cold recoveries followed an Arcade Fire concert.

Since then I’ve had three or four ridiculously mild and short colds, lasting one to three days. Recently — mid-December 2022 — I had a very mild cold with respiratory symptoms that lasted a week — negative for Covid-19 throughout — but I continued to feel fatigued through late January. Lab tests in mid-February showed Epstein-Barr virus (mononucleosis) was still active.⁴

January 2010 through November 2022. Intermittent ‘brain fog.’ The first episode was from a Jarisch-Herxheimer reaction when my integrative doctor put me on a month of doxycycline. Since then, my guess is that not all of my brain fog has been due to Herxing. For me at least, joint aches and other physical inflammatory symptoms usual subside at the end of treatment or soon thereafter, while my brain fog sometimes arises independently and episodes can last for months.

For quite a while I went through this cycle: brain fog subsides; work on projects;⁵ burn out; relapse into brain fog.

My most recent episode ended mid-November last year. In the preceding months, I’d been reducing consumption of animal products because my doctor wanted me to reduce the level of Trimethylamine N-Oxide (TMAO) in my bloodstream. For the final two weeks of this campaign, I went totally vegan.

After completing the lab draw at the end of October, I resumed my usual animal product consumption, particularly emphasizing choline. I started feeling better two weeks into November and have been almost continuously productive — at least, I seem to be thinking, writing and coding pretty successfully and steadily — for five months now, the longest such stretch in at least five years.⁶

When my TMAO lab result arrived in early December it was nearly the highest it had ever been!⁷

Summer 2012. Bone bruise at the bottom of the left shin bone (tibia). It’s possible this began as early Fall 2007. Every now and then I’d feel a sharp pain high on my foot or at the base of my ankle when wearing softball cleats. In the summer of 2012, this became so severe that I finally sought medical treatment. Even now the bone bruise hasn’t completely healed, although I have found ways to ameliorate it; someday I’ll write about this in more detail.

October 2013 and April 2020. Shingles. Mid-July 2020. Shingrix vaccine reaction. The shingles outbreaks were possibly due to Lyme disease weakening my immune function. I’ve written elsewhere about my Shingrix vaccine reaction.

January 2019 to present. Chilblains. This might be due to a co-infection with Lyme disease — most likely bartonella. The immediate cause has been cramped, cold toes while speed skating. The chilblains clear up at the end of winter. Somewhat like Borrelial lymphocytoma, the dead skin peels off, leaving behind relatively healthy skin, but usually not as pink as with Bl.

In August 2018 I did a relatively new lab test for tick-borne diseases, which was weakly positive for Lyme, positive for Bartonella and strongly positive for Babesia. I wasn’t surprised by the weak positive for Lyme due to the ability of borrelia species, when not immediately treated, to leave behind spores that can re-emerge particularly when the immune system is weakened. But I’d had negative lab results for Babesia microti, Ehrlichia chafeensis, Anaplasma phagocytophilum, and Bartonella henselae back in December 2009. It’s possible that I contracted the bartonella and babesia some time after that — possibly from a dog bite a few years earlier; it’s also possible that the 2009 lab didn’t have sufficient sensitivity.⁸

During the 2019-2020 speed skating season, the chilblains began earlier. Due to the pandemic, I didn’t speed skate in 2020-2021 and stayed chilblain free. The next season I developed chilblains almost immediately, in early October 2021. For the start of the 2022 season, I took nattokinase until a family Christmas trip, when I forgot to pack it. I started getting chilblains on Christmas after a snowy hike. After getting home and resuming nattokinase, the chilblains started healing. One of my current doctors recommends that I cycle nattokinase, one month on, one month off. When I cycled off at the end of January, the chilblains immediately worsened. So next year I plan to maintain nattokinase throughout the winter.

1. The first truly awful occurrence was my 2009 work on the Netflix Prize. I failed to notice an early oversight, plowed on to complete my implementation just ahead of the deadline, only to find that its dominant component was total garbage.

2. My first season playing in a 40+ softball league, I had 22 outfield assists in 21 games.

3. In retrospect, it would have been neat if I had thought to get a sample of that fluid.

4. Some cases of long covid are likely similar in nature.

5. Usually unsuccessful, see ‘impaired cognition’ above.

6. My handwritten math is still fairly error prone, but fortunately there are symbolic mathematical tools like Mathematica.

7. I plan to write more about TMAO!

8. My initial symptoms warming up for the July 7 2009 baseball game could well have been Babesiosis.