Ongoing symptoms after Lyme treatment — post-treatment symptoms, recovery, or possible ongoing infection?
Hi everyone,
I’m looking for opinions/experiences, not a diagnosis. I’m already under medical care and I’m due to see a neurologist in July.
In 2024, I found a circular rash on my right knee around late August. It was quite large, maybe around the size of a mini football at first. By the time I was diagnosed in November, the rash had expanded a lot, probably around the size of three footballs across my leg.
I was treated for Lyme disease with 10 days of doxycycline. After treatment, I felt pretty good for about a month and a half. Then new symptoms started appearing, mostly neurological-type symptoms.
The symptoms included:
- Pins and needles / tingling
- Brain fog
- Heavier mental fatigue
- Muscle twitching, including facial twitching
- Body soreness
- Sensitive skin / muscles
- Skin feeling uncomfortable against clothes
- Fatigue, especially after college or long days
In May 2025, I started using herbs like cat’s claw, Baikal skullcap, and Japanese knotweed. Around summer 2025, I actually felt pretty good at times, but I still had flare-ups. Things seemed to get worse again when I started college in September 2025.
At the moment, I do feel better in some ways compared to a year ago, but worse in other ways. The deep fatigue is not as bad as before, but I still get fatigue after long days. The twitching has calmed down a bit, but still appears sometimes. The main symptom I notice now is that my skin and muscles feel sensitive, especially against clothes.
I saw an infectious disease specialist recently. He does not suspect active Lyme now and thinks it may be recovery/post-treatment symptoms or possibly another underlying condition. I’m waiting to see a neurologist.
I’m also supposed to go to Germany soon for a work placement. The days are long, around 6am to 5pm including travel/work, and I’m worried about whether I’ll manage. At the same time, I feel like routine and staying busy might help me, and sitting at home worrying probably won’t.
So I’m wondering:
Do these symptoms sound familiar to anyone after Lyme treatment?
Could this be post-treatment Lyme symptoms/recovery, nervous system sensitisation, or something else?
Has anyone had skin sensitivity/allodynia, twitching, tingling, and brain fog after Lyme?
Did routine/work help you recover, or did it make you crash?
I know Reddit can’t diagnose me. I’m just looking for experiences and opinions while I wait for neurology.