u/Adventurous_Dot_1719

I’m trying to find anyone whose symptoms actually resemble mine, because mine don’t always look like the classic pictures/descriptions of EM (current dx is Lyme, Bartonella, Raynaud’s and EM-like symptoms).

For about 8 months I’ve had episodes involving my feet where I get internal burning/heat, stinging, raw or sandpaper-like nerve pain, and sometimes visible pink/redness and warmth. This time last year, I was running 50 miles a week. My body has been historically very resilient, but these days—not so much.

Heat, standing, walking and having my feet dependent can provoke it, but not consistently. Sometimes I can walk 15–20 minutes and recover pretty quickly once I stop; other times one part of my foot starts burning with very little provocation.

What’s especially strange is that the flares have become increasingly focal and spontaneous 5 months into treating Lyme, etc. I’ll be lying down at night and suddenly just my right big toe, one heel, or part of the ball of my foot will become hot/burning. I’ve also had episodes in individual fingers/hands. Entire foot/hand used to be involved. Nighttime flares have resurfaced recently become frequent enough to interfere significantly with sleep.

Other things I notice:

• Feet can feel warm/full and look pink/red after getting up in the morning.
• Standing still/dependency often seems worse than elevation.
• Elevation frequently helps, although not always immediately.
• Cooling can shut down a flare quickly, but very cold ice can actually be painful/uncomfortable for the nerves, it seems.
• Sometimes the foot feels intensely hot internally while it isn’t particularly hot to the touch.
• Other times the affected area genuinely is warmer/redder.
• Hot weather and warm pools are much harder to tolerate.

EMG was normal, ANA negative, and genetic testing for primary EM mutations was negative. I’m waiting for neuromuscular/autonomic evaluation for possible small-fiber/autonomic involvement.

Has anyone here had this kind of mixed vascular + nerve pattern, especially the one-toe/one-heel flares, internal heat without always being externally hot, or major nighttime flaring? And if so, did doctors eventually figure out what was driving it or find medication that controlled the flares? I know there’s a root cause in here

Not looking for a Reddit diagnosis — mostly hoping to speak with people whose phenotype is genuinely similar.

Been treating Bartonella via LLMD for almost 5 months with some very slight progress around a few specific symptoms (tested IND via IGeneX). Went to a new PCP the other day and got a really polarizing POV from him after testing negative at standard lab for the classic 2 Bart species.

LLMD just switched up some of my meds, thinking I may have Babesia too. Just sent out more blood to IGeneX. PCP added a few symptom-lowering meds to my stack (increased gapabentin which I hate and don't think works anyway, and Duloxetine which is new so TBD), but again, said: don't think you have Bartonella, consider stopping abx.

Feeling confused and discouraged as I really bought into the Bart of it all, and believed my LLMD that getting my feet back under me (literally, as I've been dealing extensively with nerves/vascular issues since early this year) would just take time. Now, preparing to be put back through the ringer with neuro, etc.

Anyone else have this happen?

I don't have an official small fiber neuropathy (SFN) diagnosis yet, but my doctors and I believe Bartonella (which I have been diagnosed with) likely triggered many of the symptoms I'm dealing with.

In the beginning, my symptoms were mostly vascular. My feet would become red, feel swollen, and burn with heat when standing or walking—very similar to erythromelalgia. Since starting Bartonella treatment several months ago, those symptoms have changed. The intense surface heat has improved, but now I have a lot more neuropathic symptoms: cold feet unless they're dependent or I'm "active", tingling, sensitivity, and feet that feel uncomfortable unless barefoot.

Honestly, one of the hardest parts has been feeling like I'll never be able to wear normal shoes again. Even shoes that used to be incredibly comfortable now seem to irritate my feet, and it's hard not to wonder if this is permanent.

I'm looking for people who had Bartonella-related SFN (or similar neuropathy) who eventually improved. Did your feet become less sensitive over time? Were you eventually able to wear normal shoes again? How long did recovery take, and what do you think helped?

I know everyone's experience is different, but I'd really appreciate hearing some positive recovery stories. Thank you.

Title says it all. Have Bartonella and am being treated by an LLMD where I no longer live, so need to find a new one. Also open to an NP with experience in this realm. Give me your best shot.

For any of you who were dx with SFN, did you have a root cause of infection? I have Bartonella and Lyme - the former especially is known to cause peripheral neuropathy. Super painful and very over this. Want to know if anyone got dx with reasoning (not just skin punch and a dx without cause) and your timeline for healing.

Hi all,

Been fighting Bartonella for 4 months now (Rifampin, Minocycline, herbs, Lumbrokinase, EBOO) with symptoms at one point making me bedbound, then housebound, then sort of able to move around outside/errands within reason.

I went through some old texts/notes with myself from my marathon training block last summer (yes, I was well enough to run a marathon last fall, now I can barely walk), and surprised to find that I was documenting some of the symptoms I have now at very early stages as early as a 7/2025 (zaps in toes, heat in feet during runs, nerve pain all up and down my hamstrings from spring through EOY).

In trying to chase what I thought was a herniated disc, I got a bunch of steroid injections, was on oral steroids, as well as Skyrizi for other reasons, so obviously my immune system was in a perfect spot to get hit. Generally, super sad to see that it was all coming on way back then - just reminds me how deep it is in my system.

This journey is very non-linear as we all know, but curious what other folks med stacks/activity levels looked like at this point (16 weeks-ish in) - and welcoming any positivity. Know this is a beast and a long haul.