Here is the progression of what I thought was my life's first Lyme Disease infection, presented as a cautionary tale especially to those who spend a lot of their time in the woods and fields.  I'm in the Northeast, one small state away from Connecticut, where Lyme was first discovered as a distinct problem and named after the town.  I say "life's first" because once contracted, the Borrelia Burgdorferi bacteria can remain in the body basically forever, whether infection symptoms are produced or not.  It's kind of like AIDS, there's always a chance it can resurface months or years down the road whether triggered by new tick bites or not.

There are also no reliable direct blood-based tests for the bacillus yet, only various indirect ones that look for signatures of specific antibodies which may or may not even be there.  Especially in the earliest stages of an infection, before said antibodies have had much of a chance to develop.  But in my case the symptoms were severe enough that I had to do everything I could to knock it down pronto, and hope things didn't get too well-established in the interim.

Late June / early July:   I was at a weekend event in the Berkshires, then on my usual weekly outing in a local park, and then it was 4th of July weekend where we sit on the grass in town commons and school fields and watch fireworks.  The next week also held more outdoor events for me, including a big "knotweed knock-down" with the Friends of the Fells and then another Wednesday.  Mind you, I've always been super careful about ticks, since they're known to be so prevalent in this area.  I always DEET before going out, using the 100% stuff on all exposed skin and even under clothing around the midriff, and then do nekkid full-body tick checks with a flashlight and mirror after getting home.  I hadn't found a tick on me all summer, but didn't let that make me get cocky and take the possibility any less seriously.  Nonetheless, something must have gotten past the defenses and scans.

Thursday, July 10:   I woke up feeling a bit off, with a noticeable body chill.  That rapidly got worse over the course of the day, quickly turning into very flu-like deep chills alternating with fever and sweats -- thermal regulation was clearly out the window already.  I figured I had caught one of those "summer colds" people talk about, although such a thing is extremely rare for me.  Interestingly, though, there was no congestion at all in my nose or throat -- my typical cold/flu is 24 - 36 hours of the feel-like-shits with some degree of stuffy nose, and then it's gone.  This was different somehow. 

Friday - Saturday, July 11/12:   The chill/sweat cycles continued mostly unabated, coupled with an absolutely skull-crushing headache and general body/muscle aches and profound malaise.  The headache first centered ahead of my right ear, but then spread around a broader band into the typical behind-the-eyeballs sort of thing.  I basically spent most of the time in bed, trying to sleep.  All I had in the house to begin with was naproxin, which usually knocks such things down pretty effectively, but very high doses were barely taking the edge off it this time.  Naproxin is not designed for *frequent* dosing, but there I was feeling compelled to pop another one every couple of hours.  I know women whose answer to severe menstrual cramps is megadoses of Aleve, and they're not dead yet, so ...  [I also had aspirin but have more or less given up on that as it'e less effective and eventually has side-effects around the stomach.]  The headache flooded over me as intermittent peaks of pain -- a couple of seconds every 10 - 20 seconds or so, not "throbbing" with my pulse in the traditional sense of the word but definitely coming in repeated and relentless sharp waves.  Along with I had absolutely no energy; I poked halfheartedly at getting my gear together for the upcoming Readercon that I would (hopefully!) be working, but could barely drag myself around the house.  I also had no evident appetite, but forced myself to eat a little just for the sake of fuel.  I managed to participate somewhat in our weekly tech pow-wow Zoom Friday evening, but didn't feel on any kind of recovery path yet.

Sunday, July 13:   I concocted an experiment: I would try all the basic painkiller types one by one, to see which of ibuprofen or acetaminophen or even aspirin might have better and maybe safer effectiveness than naproxin.  I dragged myself down to the local pharmacy and picked up a bottle of each.  Longer story short, ibuprofen didn't touch it [never has worked for me, I confirmed that] but acetaminophen (Tylenol) seemed to have more effect.  So as it settled out, I would spend the next day or two basically poisoning myself on frequent doses of that but at least maybe be able to think.  My liver would just have to deal; it's handled its share of insults.

In the meantime I was frantically googling for what these symptoms might mean, and the answer was a broad class of "just about anything".  I did one of those "trivalent" antigen tests for Covid/flu/RSV; all negative.  My oxygen was a mostly normal 96 or so; slightly elevated pulse but nothing crazy.  So WTF was this??  A "sentinel headache" before having an aneurysm?  Was I developing ALS or myalgia something?  I had actually mentally ruled out Lyme, because I was always careful and had not found any ticks on myself recently let alone let one stay attached for more than 24 hours.  I dropped some brief recounting of this into a couple of communities and got more than one "go get tested for Lyme" response.  So then I went back and took the different approach of looking up the symptom progression of Lyme itself, and basically found the closest match for what I was going through.  And that there's no specific or simple "test for Lyme", per numerous evidence-based papers and references at places like Lymedisease and ILADS -- organizations dedicated to the study of this specific disease.  Ironically, I found pointers to a lot of these resources on Reddit of all places.  Turns out there's a really supportive community around this ailment, as with many others.

Okay, at a minimum it was clearly time to try antibiotics.  Now, who do we contact for that on a random Sunday afternoon?  Likely not my seldom-visited PCP, although I did hop onto their "patient gateway" thing and sent their office a message with the symptoms so they could at least read about it Monday morning.  Meanwhile, other folks were saying "go to Urgent Care".  I drive past one routinely, but had never been in such a place and had no idea what they even do.

Monday, July 14:   Well, apparently urgent-care places are where you can actually get seen and attended to faster than visiting your established primary-care physician.  How fucking ironic is that?  Then it was up against an assortment of balky websites, where the local UC place that seemed to have the highest Google reviews said there were no appointment slots that entire week; then, another one down the road whose site said "online scheduling is unavailable at this time".  And these outfits are supposed to be helping people?!

I finally called the secondary (of several more possible) choice's office and was told no appointment needed, just show up, and they didn't have any wait right now.  Their website had actually mentioned Lyme among ailments they handled, so that was a little confidence-booster.  By now I was more convinced of that as the issue, despite checking myself multiple times for a bullseye EM rash that still wasn't there.  I got there and did paperwork and they took me in, did some basic vitals, and I finally got to talk to a doctor.  I threw on the fakeouts to go in just to keep the front-end people from freaking out, but the doctor eventually realized that my "shoes" had no soles and was actually quite amused and impressed that my life simply doesn't include shoes.  She agreed that what I was going through was very Lyme-like for its earliest stages, said they couldn't do blood lab work on-site and sending it out would take a long time for results, and we decided as sort of an "experiment" to prescribe me a 10-day course of Doxycycline.  She sent the scrip to my usual pharmacy, and that was my next stop, and then back home to pop the first 100 mg and continue being miserable. 

Tuesday, July 15, and short-term onward:   After the first two doses on Monday and a reasonable night's sleep, I woke up Tuesday morning and basically had my life back.  Still not 100%, but headache at a low ebb and I felt much more able to think and function.  Clearly, the Doxy was already working!  I spent the day catching up on stuff and felt pretty much back to rights that evening, and then went for my normal Wednesday outing the next morning like always.  And then Thursday it was off to the hotel to build the convention tech, and I had plenty of energy going into that.  It was like a fucking miracle, and I still had eight more days to go with the antibiotics.  Longer story-tail short, I went to the con and worked it, felt perfectly fine, and the gear I had provided functioned really well and helped make the conference rooms basically set-n-forget instead of needing constant babysitting by a sound volunteer.

However, if you check some of the Lyme references above you'll find that the modern accepted wisdom is that 10 days of Doxycycline at 200 mg/day is actually *not* enough, the recommendation is *minimum* 21 days and possibly 4 - 6 *weeks* of the stuff.  And plenty of probiotics to try and counter the impact on gut bacteria.  This seems a bit of a tradeoff, but I happen to love banana slices in yogurt and that's about as probiotic as it gets.  But not right on top of the Doxy, because the calcium in dairy can interfere with its absorption if they're consumed together.  All these crazy subtle interactions to know about!

So I sent my PCP another message toward the end of the 10 days, detailing my research and asking if they could scrip up like another 10 or maybe 20 days for me.  20 would take the treatment to a full month, which I'd be willing to keep up with if it gives any better assurance that I've squashed this thing.  At this point I'm waiting for an answer.  In light of the most recent research, them refusing to give me that would feel like borderline malpractice, since it's pretty obvious what the situation is by now and the correct course of action.  I'm not happy about facing the possibility of random future flare-ups, but at least I know what to look for and how to deal with it.  Hopefully I caught that very initial stage early enough to eradicate all the spirochetes, but one can never tell especially if they go into their "cyst" or "biofilm" passive forms -- one of several creative ways they can hide in the body.  In that state they basically look like little rocks floating around in the bloodstream and the immune system ignores it.  Scary stuff.

So I always DEETed, checked myself, never found a tick this year, never had a rash.  My bare and relatively hairless legs slathered in DEET have been a pretty reliable defense against ticks -- unlikely to attach, and if one does hook on despite the repellent stinky it's easy to spot heading upward.  Although the incubation time would have been awfully short, maybe a tiny young one got on me and under my hairline while I was thrashing around in the knotweed, as that's about the only place I would have been off-trail and contacting foliage at head level.  They usually don't "quest" that high up, but maybe one hopped over while I was carrying bundles of cut stuff to the big pile that DCR would eventually come pick up?  Falling sick would have only been two days after that, though, and the usual incubation is 3 to 10.  Maybe I just missed something during that camping event in the Berkshires.  In hindsight, maybe sitting on the grass for an hour-plus at the park [in the dark!] where I watched the fireworks may not have received enough of a check afterward, as that didn't feel like "being in the woods".  At this point I'll likely never know what that original vector was.

What's kind of ironic is how some folks say that Japanese knotweed extract is effective against Borrelia bacteria, and there I was romping in it for several hours that one invasives-clearing day.  Of course any "herbal remedy" source trying to peddle such things is totally gouging the market, because that's what those people do.  Actual (and safe) extraction instructions don't seem anywhere to be found.

Anyway, this is undoubtedly an ongoing situation, and I expect that the rest of this will become kind of a running blog as I go forward.

While at the PCP I had an interaction I *really* didn't expect or want, when some office-manager type took it upon herself to bully me about my feet and tried to prevent me from going to the blood lab without shoes [which I had certainly been to in the past with no problem].  So another use for the gateway's messaging system was to file my official complaint about that nonsense, fairly self-explanatory below.

My otherwise pleasant visit today was marred by an unpleasant interaction with
one of your office workers.  Many of your staff know that I do not wear shoes,
having no need or desire for them, and any medical practitioner or associate
thereof should understand the health benefits of that.  Dr. K... certainly
does, and he and I had an extensive and very favorable conversation about it
on my first visit to him.  He grew up frequently barefoot himself in his home
country, so he totally gets it.  The receiving nurse and Dr. Costas today were
also cordial and even a bit curious about my lifestyle, especially around
outdoor activities.

However, when it came time to draw blood for lab tests, "Amy" who said she was
a "front-end supervisor" tried to BLOCK my visit to the blood lab that the
doctor had already ordered, only on the basis of my footwear choice.  Nobody
in the NSPG has *ever* done that to me, they've always been accepting and
understanding and positive.  But Amy just wanted to go on some petty power-trip
based on her own personal prejudice, citing some weak excuse about "safety" and
"needles".   For her to express that kind of ignorant attitude and try to make
it a showstopper was nothing more than rude and unprofessional.  The
interaction left me feeling upset and shaken.
  
I would therefore like to file a formal complaint against "Amy" and her
behavior.  You do not discriminate against clients based on improbable
theoreticals and outdated mythology.  I suggest a visit to various helpful
websites like barefooters.org and outbarefoot.org for a bit of truth and
sanity-check.  Finally, someone else came along and overruled her, and sent
me off to the blood lab anyway.  The phlebotomist welcomed me and was totally
receptive, aptly saying "I want your arm, not your feet".  Neither of us could
find that supposed litter of used needles all over the floors there, and she
even seemed somewhat taken aback that anyone would imply suspicion about
careless disposal procedures.

"Amy" needs to be in some other position and possibly career path, where she
never interacts with the general public at all.