Lyme, human edition

[RooTheDay]

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?

[Simkie]

Yeah, it’s reasonable to treat for Lyme here. You may have to pay out of pocket for a “Lyme literate” doctor. I eventually saw Cameron:

Welcome To Dr. Daniel Cameron's Practice - Lyme disease doctor

(A couple rounds of Lyme are 100% what triggered my idiopathic hypersomnia/narcolepsy thing. Sometimes that need to sleep doesn’t go away.)

Do you…uh…have any doxy or mino left over from your horse’s Lyme treatment? Not that anyone should ever take meds not prescribed. But.

[RooTheDay]

Yeah, very fortunate that I can both self-refer and pay out of pocket if necessary.

I did read about the Lyme-literate provider list but it seemed to have quite a bit of overlap with homeopathy, naturopathy, chiropracty, etc., as well as a focus on folks for whom conventional treatment has failed. Which might, obviously, be me at some point! But I was hoping to start by talking to someone with Lyme expertise, but also a more conventional medical background. (There may well be some of those people on the list, but it’s difficult to figure out who they are, so really appreciate the specific recommendation.)

Of course no one is suggesting that anyone take any leftover horse meds! Especially because I don’t have any except some powdered compounded mino that I may or may not have shared with a barn mate whose horse also had Lyme, which is of course something else we would never do.

(Honestly my vet would probably be more than happy to wink if it comes to that, but also, with the neuro manifestations, if it is Lyme, I’m concerned I might ultimately need IV ceftriaxone, and I would prefer not to go into that conversation with “I started out by self-administering doxy from my vet and that didn’t work so now I’m here.”)

Thanks for the confirmation that I’m not totally off-track. I have some medical training and am usually pretty good at advocating for myself… but ironically, the brain fog is making that really, really difficult.

[Renn_aissance]

Because you are in MD: if you can’t get into Hopkins, another doctor recommendation is Dr. Alina Sanda at Mercy. She practices primary care but her background is in infectious disease and she previously did research work on the original Lyme human vaccine.

ETA: considering they have a whole Lyme research department, I think you are right to call Hopkins first.

[RooTheDay]

@Renn_aissance

Because you are in MD: if you can’t get into Hopkins, another doctor recommendation is Dr. Alina Sanda at Mercy. She practices primary care but her background is in infectious disease and she previously did research work on the original Lyme human vaccine.

ETA: considering they have a whole Lyme research department, I think you are right to call Hopkins first.

Thank you for the recommendation!

I was initially going to call Hopkins and just try to make an appointment, but their website is very clear that they’re referral-only if you don’t have a rash. I guess I could try calling them and explaining my reasoning + labs to see if they’ll make an exception, but hopefully my PCP thinks it’s reasonable since they were suggesting a rheumatologist anyway and just does it, and hopefully they’re willing to see me.

Really appreciate the additional option, though, because this feels pretty time-sensitive: I know my work performance is suffering. Plus, I’m also moving in about a month, and even starting to prep for that has been… A Struggle ™.

[beowulf]

No advice, just commiseration. Good luck with your move and please keep us updated.

[Inimitable]

Yes, Lyme is a reasonable - and likely - assumption. I have a very similar story, but I’ve likely been infected for 3-4 years and didn’t get a diagnosis until this past spring. Start on doxy - one month (not 21 days) is the recommended treatment for Lyme arthritis and joint involvement - and get referrals lined up in the meantime. I did two full months of doxy, at the end of which I felt about 90% better. A month exactly after I stopped antibiotics, my symptoms started to come back. My PCP prescribed yet another round of doxy while I queued up a referral to a Lyme specialist. The doxy is keeping my symptoms manageable while I wait for my appointment.

I had the same reservations about Lyme literate doctors (some of them are just too “woo” for me, but that’s not to say I won’t go there eventually if I get desperate enough) so I found an infectious disease MD who specializes in treating long-Lyme. I have an appointment next month and I’m anxious to get started on a more aggressive treatment to hopefully knock it out.

Good luck. It’s really awful and it’s wild to me how far behind the science most doctors are.

[GreyDes]

I’ll add that the Lyme tests are notoriously bad for picking up chronic Lyme. They’re only designed for acute diagnosis so you’re right to be pushing for this as a possibility based on where you live and risk factors.

I used to work in infectious disease testing and there have been several unsuccessful efforts to get the CDC to update its criteria for Lyme. I saw an article recently that with all the data on long COVID there is now more research being done on chronic Lyme as well.

Also, is there any chance you’re in or starting perimenopause? That’s another possibility for several of your symptoms and you could easily check it with a hormone level test.

[trubandloki]

@RooTheDay

“I started out by self-administering doxy from my vet and that didn’t work so now I’m here.”)

If you are lucky enough to get a doctor who is a horse person they would totally get this.

Jingles for you, hope you are feeling better quickly.

[RooTheDay]

@GreyDes

Also, is there any chance you’re in or starting perimenopause? That’s another possibility for several of your symptoms and you could easily check it with a hormone level test.

Good shout but I’m actually a dude—in similar vein, though, did check T levels and they’re right where they need to be. Still an excellent suggestion, though!

[GreyDes]

@RooTheDay - Good to be able to rule something out

I re-read your OP and the high IgG means that you had Lyme exposure/infection in the past. Unfortunately, to the best of my knowledge there’s no direct way to determine if it’s now causing your symptoms but it certainly supports being suspicious that you may be dealing with Lyme. IgG will remain elevated post infection and it’s possible to get an infection that your body fights off without it becoming chronic.

A high IgM typically means a current (acute) infection. This marker will go away, so it’s not helpful for assessing chronic Lyme.

You may want to check ILADS for a local Lyme savvy physician. I hear you that some of the “Lyme specialists” can be a bit out there, but you don’t want to mess around if this is Lyme.

Unfortunately, because the CDC hasn’t updated their guidelines in eons the testing and treatments are highly physician/healthcare system dependent.

You can screen for someone with an approach that works for you. https://www.ilads.org/patient-care/provider-search/

[4horses]

Welcome to the club of misery. I have alpha gal syndrome from tick bites. I did test negative for Lyme twice but my doctors don’t know a thing about tick borne illness. I have repeated asked every doctor I have seen to run a full tick borne disease panel and even went to see an infectious disease doctor and all have refused to run the panel.

I also have fatigue and joint pain and asked for a rheumatologist referral and was denied and told to see pain management instead. The infectious disease doctor told me to definitely see rhumatology but my primary won’t give the referral. I give up… So I am set to see a new doctor next week and ask again for the testing and referral.

At this point I’m about ready to order some doxycycline online and self treat. Yes it could be autoimmune and I would like testing for that as well, but who knows at this point when every doctor refuses to do the tests. They just aren’t interested in helping.

[Bogey2]

I test positive for having had Lyme over many years…I only get tested when I have a high fever from one of the other tick borne diseases or pulling a tick off myself. Don’t rule out Lyme but also look at long COVID. I have a friend with similar symptoms who had COVID for the first time that she knows of and she was lethargic as well as had brain fog.

For the record I only take the short course of Doxy when needed and it works. I do the same with the horses and have never had a problem.

[RooTheDay]

Small update: did try giving Hopkins a call in hopes that the lab findings plus lack of treatment to date might convince them, but since the initial lab work was from last Sept they are holding fast on the “have your PCP send a referral and we’ll let you know if we’ll see you a month or so after that” thing. Still no word from the PCP. Fun times.

[LaurieB]

I had Lyme disease three times in the 1990s (I’m sure–or at least I hope–that medicine has moved on since then.) At the time I was living in CT, basically ground zero for Lyme. The first time I got the rash, the second time “just” symptoms–my MD was skeptical when I asked for doxy, but a friend referred me to the best Lyme doctor in the area and I got the med right away.

Third time, that MD put me on doxy and said, ‘just stay on it, it’s safer’. So I did, for 2+ years until I moved to Atlanta. I never had any ill effects from the long-term doxy, and was fortunate not to be exposed again. In CT I had many friends who had worse, and much worse symptoms than I did, one of whom was out of work for more than a year. A course of doxy seems to me like a relatively benign thing to try (I am NOT a doctor, and have no real medical knowledge!) if you can get an MD to give you a prescription.

[beowulf]

Sorry to hijack your thread Roo, but since there’s people chiming in with their own experiences I wanted to ask –
I went to a multi-day adult riding camp in early July. Lodging wasn’t provided so I camped at a local state park and did tons of hiking in my off-time. Halfway through the camp I felt exhausted, but chalked it up to the physical labor, heat, and (TMI warning) Aunt Flo arriving just as I settled in . I lost sensation in my left leg from knee to the end of my feet, but I’m riding and hiking fine. Two days after camp’s over I find a tiny tick that’s partially engorged on the back of my left thigh, the same leg. Pull it off, call my PCP. They don’t get back to me until a week later, they give me a one-day script for Doxy, I take it and within 20m I’ve puked up the pill. It’s been 2 weeks since the dose and I’ve had all sorts of weirdness; the top of my hands and arms are somewhat tingly, my teeth and jaw are killing me, and any time I eat something I have an awful stomach ache which is really unusual for me. I called my PCP and they are supposed to be getting back to me, but last night I couldn’t sleep at all because my jaw and teeth hurt so much. The jaw/teeth symptoms sometimes overlap with a cold for me but the stomach thing is new - should I be pushing harder to be seen? Wait a few days and see if things level out?

[Inimitable]

Push to get seen and for a longer course of abx. I know you know this, but there’s all sorts of other tick-borne diseases to be concerned about as well, not just Lyme. Bartonella, babesia, ehrlichiosis, anaplasmosis, etc. You do NOT want to deal with a long-term or chronic infection. I went to my PCP in July '21 with what I thought might be a bullseye rash. It was written off as fungal and I wasn’t given any abx - here I am 4 years later dealing with long Lyme and some pretty debilitating symptoms. How I wish I had advocated for myself.

[Simkie]

@beowulf

These symptoms sometimes overlap with a cold for me - should I be pushing harder to be seen? Wait a few days and see if things level out?

If your PCP won’t get you in, or just send a script, I’d honestly head to urgent care.

[GreyDes]

@beowulf - The one day Doxy is only effective for IMMEDIATE treatment. It’s a prophylactic, not a treatment for full blown infection.

The CDC says one dose of Doxy within 72 hours of the bite. If you didn’t get it for a week plus then there is time for an infection (Lyme or other TBD) to take hold and it will need more to treat.

lyme-pep-low-ink-p.pdf

I agree with the posters saying get it checked. If you’re a few weeks post bite you’ll have antibodies if you got something and it’s worth pushing for a full tick borne disease panel. At minimum it’s a good rule out.

[phantomhorse]

@beowulf

I lost sensation in my left leg from knee to the end of my feet, but I’m riding and hiking fine. Two days after camp’s over I find a tiny tick that’s partially engorged on the back of my left thigh, the same leg.

This sounds alarmingly like tick paralysis to me. I would be at urgent care asap.