Last summer I spent several months tramping on foot, around some large and mostly unmowed pastures, with my neuro horse. Who incidentally wound up having chronic Lyme herself, though she came from New Jersey and had a history of it when she came.
A bit after that, I started to notice some symptoms that were consistent with Lyme: fatigue, knee and finger joint pain, brain fog. I additionally experienced significant burning sciatic pain originating in the low back/hip and running down one leg; while the timing correlated, this could also have been due to my fairly recent hip surgery. I went to my PCP and asked to be tested, which they obliged; I also noted that it was possible that the symptoms were due to stress/fatigue/getting old (there were significant external life stressors occurring.) At the time, my PCP said that the test came back negative, which it did by CDC criteria, and I let it drop.
I did feel better somewhat after some of the external stressors decreased, though not at my baseline. Over the spring, I noticed that my heat tolerance was much less than it usually is, but chalked it up to getting unfit. But about six weeks ago now, I started having really significant symptoms again: everything from the previous list plus headaches, full-body muscle aches, neck pain and stiffness, peripheral neuropathy in my hands/feet, subjective slight decrease in balance, and absolutely crippling fatigue, to the point where I actually took a lunchtime nap or two from my desk job because I just could not keep my eyelids open.
This is incredibly unusual for me; like many on this forum, I am pretty high-energy. Most recently, this past winter (while still not feeling 100%!) I rode 2-3 horses a day, worked full-time, taught three days a week, and was tired but fine. Now I’m riding one horse, not working out, sleeping 8-10 hours a night (or more–one weekend I napped for four hours, slept for another 11 that night, and still woke up feeling like crap), and can’t keep my eyes open at my desk job. Plus the brain fog continues to worsen: the other day, I couldn’t remember the name of my trainee instructor, with whom I taught 3x/week for the last six months. My nickname literally used to be The Human Tape Recorder, so this is a definite aberration.
So I looked at the previous blood work in detail, and when I did I found that my PCP had done a line blot, which–while, again, this doesn’t meet CDC criteria, since it’s only one band of 10–was positive for IgG P39 in Sep 2024, which is apparently highly specific for Lyme? I went back this week and got another round of labs, and I am now still positive for IgG P39, but also for IgG P41 and IgG P58. Everything else looks fine (we also checked iron, B12, other tick-borne illness, etc.)
I am aware that Lyme is a somewhat controversial topic in medicine, but also, I have a strong history supporting this, Borrellia-specific proteins in bloodwork, and a really compelling symptom cluster. PCP offered a rheumatologist referral based on the joint aches. I’ve countered by asking them either to try a 21-day oral doxy course based on symptoms, environmental history, and the fact that I’m in an endemic area (Maryland), or to refer me to a Lyme-knowledgable rheumatologist (I suggested John Aucott at Hopkins.)
I’m waiting to hear back, but I know many others here have dealt with this. Am I on the right track here thinking this is likely Lyme, and if so, thoughts/suggestions for next steps?