Hi all, new here. I've lurked for a while reading threads and feeling comforted that I'm not alone. I have others in my life affected by this disease, but they haven't struggled quite like I have. So while they're empathetic and always listen, their experience is limited.
Background: Diagnosed with lyme as a child, it came back about 8 years ago, in my mid-20's. Treated with various abx for a few years through a LLMD, transitioned to herbals, and enjoyed an asymptomatic period. Fast forward to last year (early 30's), and I had some fog creep in and decided to try pulsing to clear out my system. Well, that triggered some new symptoms I didn't feel previously, starting about 6 months ago.
Over the past 6 months, I have been on a lot, not all at the same time, but the list includes Minocycline, Rifampin, Nystatin, Diflucan, Itraconazole, sida acuta, houttuynia, and a whole lot of supplements. Currently on Mino, Rifampin, and Nystatin. At some point during this phase of treatment I developed some neuropathy. This is something I haven't experienced previously, so I'm a bit scared, and looking for some moral support and advice.
The neuropathy I experience is a skin sensation. It's almost like pin-pokes, skin tingles, or a crawling sensation. This started on my legs, and I've had surface muscle twitches on my legs as well. I added some supplements to help with nerve repair (CoQ10, Carnitine, NT Factor), and this seemed to reduce the "intensity" of the issue. I'm not sure if this has masked symptoms, or actually healed them. However, as of late, I seem to be noticing neuropathy symptoms on my skin in other areas of my body (arms, core, face, scalp). The other areas of my body tend to be a bit more of an "itchy skin" sensation, although some of it is minor pin-pokes as well, while my face seems to be more of a "tightness" feeling. This "expansion" of neuropathy started around the time that I added Rifampin about 1-1/2 months ago, coincidence or not. Immediately after starting Rifampin I noticed that the leg neuropathy became more persistent, triggering me to add in the nerve supplements. It has gradually expanded since then.
The expansion of the neuropathy is mainly what has me concerned, scared of what could be coming next. Given that Rifampin targets not only Bart, but also cyst lyme, I'm not sure what bug (or bug die-off) might be causing this. I was hoping treatment would stop this stuff in it's tracks, rather than getting worse.
Long story short, Have others have similar expansion of neuropathy symptoms while on treatment for Lyme/Bart? Hoping I'm not in for another 2-3 year slog on abx...