To be honest, I just read some stories on this thread about people who’s body wide nerve pain never has gone away and it’s jsut their life now and I am spiraling about it. Mine has definitely improved, when it flares bad it’s not AS bad as it was last fall when this all started. But hoky shit it still hurts every day. Little spasms everywhere. Throbs, sharp, dull aches, you name it. It’s definitely my nerves acting up.

I’ve always assumed the pain would go away once the infections have been actively treated. Whose pain has gone away? I’ve been treating with herbs for just a few months.

Title: Ongoing neuro symptoms after Lyme treatment — unsure what to think

Hi everyone,

I’m 20 and I’m looking for opinions or similar experiences. I know Reddit can’t diagnose me, but I’m feeling pretty lost and would appreciate thoughts on what could be going on or what I should ask doctors next.

In summer 2024 I started feeling unwell with heavy fatigue and brain fog. I had been in Latvia in May 2024, where there are a lot of ticks, but I don’t remember a definite tick bite.

In August 2024 my mother noticed a large circular rash on my leg. I went to a doctor, but Lyme wasn’t suspected at first. The rash kept getting bigger, and around 6 weeks later I asked my college GP for a Lyme test. I was told it came back positive, but I never got a copy of the result. I was treated with 10 days of doxycycline in November 2024.

After treatment I felt better for about 6 weeks, but around mid-February 2025 symptoms started coming back. My fatigue and brain fog are not as bad as before, but I’ve developed/persisted with neurological-type symptoms.

Current symptoms:

• Tingling in both feet, comes and goes every day
• Skin sensitivity, sometimes clothes feel uncomfortable against my skin
• Feelings of heaviness in different parts of my body, comes and goes
• Random muscle twitches, comes and goes
• Buzzing/painful/unusual nerve sensations in different parts of my body, comes and goes
• Visual snow, especially noticeable against a blue sky
• A lot of eye floaters
• Redness at the back of my throat for around a year, sometimes sore in the morning
• Lymph nodes sometimes noticeable in groin and right side of neck
• Anxiety/stress from not knowing what’s causing everything

I’ve been seen by infectious diseases more than once. They didn’t think I had ongoing active Lyme and felt some symptoms could be part of recovery, especially since fatigue/brain fog improved.

I also had blood tests in Latvia in 2025. From what I understand, they didn’t show active Lyme. One showed borderline Borrelia IgG, later Lyme results were negative. I also had high EBV VCA IgG and low copper/ceruloplasmin on one test. I had been taking supplements/herbs, including things recommended by a herbal practitioner, so I’m wondering if supplements or low copper could be relevant.

Recently while in Germany, my sensory symptoms got worse and I was admitted to neurology for a few nights. They considered neuroborreliosis and did blood tests, nerve tests and a lumbar puncture. The lumbar puncture didn’t show inflammation, and they didn’t find a clear cause. They suggested pregabalin for the nerve symptoms.

I’ve now seen a neurologist in Ireland. He didn’t give a clear explanation but ordered more bloods and prescribed pregabalin, though he said it may only help symptoms and not the root cause. My GP is also sending me for an MRI and testing for possible stomach/reflux-related issues because of the long-term red throat.

I also have an appointment coming up with a Lyme/infectious disease specialist.

What I’m wondering:

• Could this still be related to Lyme even if recent blood tests and lumbar puncture don’t show active infection?
• Could this be post-treatment Lyme symptoms, small fibre neuropathy, nervous-system sensitisation, nutritional deficiency like copper/B12, or something else?
• Has anyone had symptoms like tingling, buzzing, skin sensitivity, twitching and visual snow after Lyme or another infection?
• Is pregabalin worth trying at a low dose, or should I wait until more tests/MRI results come back?
• What should I ask neurology/infectious diseases/GP to check next?

I’m not trying to assume everything is Lyme, but I’m still having symptoms and don’t really know what direction to go in. Any advice or similar experiences would be appreciated.

https://www.facebook.com/share/r/17yHRKPMFk/

I got bit on Sunday, rash started that night and has continued to grow. Been on doxycycline since last night. ANYWAYS… this is embarrassing to ask and when googled I just got back a random study so heres my weird question… Monday morning I had vaginitis symptoms, and I swear its from the Lyme! I have very few lady parts issues in the past and this does seem like too much of a coincidence if it is not related. Anyone with a similar experience?

Does anyone know of an absolute BEAST doctor? I have lyme & all the cos. A parasite issue too BUT I need someone who thinks outside the box (and can run bloodwork) I forever feel like there is a missing link in my case. THANK YOU.

My daughter has had Lyme + coinfections for 12 years, since she was 10. Six months ago she started sleeping more than usual. Her doctor said that this was normal; her body is fighting the infections. Now she is sleeping 20 hours a day. She’ll sit up to eat meals, then she’ll go back to sleep.

She was on antibiotics, but she was getting really sick from them, probably because she had been taking them for years. So she’s on antibiotics abx break to restore her gut flora.
Currently she’s taking a few DesBio and NutraMedix herbals.

She has started with Tesla light therapy and will begin Rife treatment next week.

Has anyone experienced this?
Has anyone tried Tesla light therapy? Was it effective?
Advice is greatly appreciated!

After 17 years of mystery illness I got diagnosed with Lyme, Bartonella, babesia, h-pylori, and ehrlichiosis. I started treatment and responded incredibly well, but accidentally got pregnant like 4 months into treatment and obviously had to go off my protocol. That sucked. I restarted treatment after weaning her, and am basically 100% with some mild lingering things, but they don’t affect my quality of life.

My daughter is 13 now, and the suspected she has my same ailments. She’s generally healthy, and not sick sick like I was. But she definitely has some symptoms, and it’s time to treat her. Her stutter that hasn’t resolved with months of speech therapy is her biggest issue, followed by migraines, and heat intolerance. My doctor doesn’t take pediatrics but because she’s 13 now, and he had me as a patient, he’s taking her on.

Our appointment is tomorrow, and he’ll order her the blood tests. I think he uses Great Plaines laboratories, so I’m hopeful they’ll catch if she has anything. (Conventional testing missed my Lyme and co-infections 6 years before I officially got diagnosed.).

Is there anything I can do to stir up the infections so that they’re more likely to be caught? I’d sit her in the sauna, but again, she’s incredibly heat intolerant.

Sounds insane, but I want to put a drop of each of my Byron white formulas in a foot bath for her, so I’m not dosing her, but her skin can absorb a little of them.
I’m not sure if that’s appropriate or not. I formation on that idea of mine isn’t widely available.

I don’t want to get her sick, but I also don’t want to chance missing an infection, even with the high standards of testing. Especially because she’s so miserable with her stutter, and I’m paying out of pocket for the appointments and testing.

Thanks in advance!

GLXG tests are expensive but Dr claims they are reliable, specifically the ISPOT tests that measure T cell response

However, the 2023 VICTORY study seemed to suggest this method produces lots of false positives

Salut, je voulais vous expliquer un peu la situation. Les premières photos, celles que vous voyez au début, datent d’il y a environ 4 jours jours. Au départ, il y a eu deux petits boutons qui sont apparus, et franchement je pensais juste à une piqûre de moustique, parce qu’il m’arrive parfois de faire des réactions cutanées un peu bizarres après une piqûre.

J’avais écarté l’idée de punaises de lit, parce que je dors avec mon copain et, si c’était ça, je pense que j’aurais eu d’autres boutons ailleurs que sur ma jambe droite et lui aussi du coup. Là, pour le moment, je n’ai des boutons que sur la jambe droite, et mon copain n’a rien du tout. Ensuite, un ou deux jours après, la marque violacée est apparue. Et c’est surtout ça qui m’inquiète, parce que je ne sais pas d’où ça vient. Depuis, j’ai l’impression que ça s’étend un peu, et il y a aussi deux petits boutons violacés à côté. J’ai pris des antihistaminiques et mis de la crème sur les boutons, mais ça ne change pas grand-chose.

J’ai aussi essayé de vérifier s’il pouvait y avoir un moustique ou autre, et j’ai mis du répulsif un peu partout, mais je n’ai rien trouvé. Du coup, je commence à m’inquiéter, parce que ce n’est pas du tout la première fois que j’ai des boutons, mais c’est la première fois qu’ils réagissent comme ça. Je me demandais donc ce que ça pouvait être, et surtout si ça pouvait être quelque chose de sérieux comme la maladie de Lyme, même si je n’ai trouvé aucune tique sur moi.

pitié avez vous eu des trucs similaires et si oui est-ce que ça va mieux ?

#piqure

Hello, I was in Chesapeake VA golfing when I saw a tick on my knee, it was definitely burrowed In me but we’ve only been golfing about an Hour so it couldn’t have been on me for long. My dumb dumb self didn’t take a picture or keep it like I was supposed to but I tried to brush it off, didn’t come off so I had to pull it off. Fast forward to today (4 days later), have had a headache almost all day. Not sure if it’s a regular head ache or if I should be concerned. Should I start a doxycycline treatment? I’m just terrified I see all this stuff about ticks and Alpha Gal syndrome I swear if I become allergic to red meat my life is over. Crazy how a tiny bug can do so much damage.
Edit there’s no bullseye rash however the area does look a little red…

yesterday the older gentleman my husband and i have cut our grass asked me to take a look at his leg (he's had Lyme previously) to see if there was a tick. i affirmed there was no tick, just a small bite mark but insisted on taking a photo in case it was something that needed to be monitored.

i just checked it with Google lens and immediately Google suggested it was likely a tick bite. should i insist he go to the doctor? he's not especially financially stable, but i don't want him to get horrifically sick :(

What is the best/most sensitive Lyme + co testing available with insurance (specifically Medicaid)? Looking for experience with any of the following panels, or other labs I didn’t come across.

Quest tick-borne illness panels (Ab or PCR)
Labcorp tick-borne illness panels (Ab or PCR)
ARUP tick-borne illness panels (Ab or PCR)
MAYO Clinic tick-borne illness panels (Ab or PCR)

Don’t come for me, I know none of these are great but I’m unable to work so no income and I’m still waiting on Medicare. I got sick in college at 20 years old (now 25) so I don’t have any financial resources. Planning better testing when Medicare comes through but it could take 1-2 years.

Symptoms include extreme fatigue, brain fog, unexplained weekly fevers, burning headache pain, obscene insomnia/hyper-vigilance, joint and facial rashes, nausea and vomiting (gastroparesis), joint pain, extremely low WBCs (2.0) with abnormal bone marrow biopsy, elevated liver enzymes, tachycardia, and more.

In 2023-2024 I had positive ELISA tests on two dates 90 days apart, and positive IgMs for band 23 and bands 23 + 41 on those same dates. Never any IgGs. I was told this was a negative test but I keep coming back to “is it Lyme”

hi, i need help to identify my situation.

on july 5th i found this extremely itchy bite on my leg. By the evening it was huge, and very itchy. i got a cortisone cream the next day, which seemed to help as the swelling and itchiness faded. Around 10 days later a rash appeared around the spot, again very itchy.

on saturday, july 18th, I went to the pharmacy to get another dose of cream, as the bite was red and extremely itchy. I still thought it is an allergic reaction to a bug bite, but the pharmacist recommended me to check it for lyme. worried i went on the morning to the ER where they prescribed penicillin for 3 days. Did blood test on Monday, negative for antibodies. the bite is still kind of pink, not as itchy (but still some itchiness there) and a bit warm touch.

In the first 10 days after the bite I did notice im a bit more tired than usual but i thought it had to do with me being very busy with a packed schedule. I also had a strong headache and a stiff back on some days. but in the past 5-6 days, there were no unusual symptoms or anything suspicious like that.

ive been spiraling ever since. I live in a city in southern germany- i haven’t been to nature or anything like that recently. Nor did i notice being bitten by a tick.

i attached all of the photos. the last one from sunday in the ER.

What do you say? What should I ask my doctor for?

thank you all in advance.

Two months ago, I woke up and both of my arms felt very heavy. Within about three days, my left hand started becoming very hard to use. I would literally reach into a bag of peanuts, and when I would pull my hand out and try to drop them in my mouth, my hands would not release them. Then came the muscle fasciculations, the muscle atrophy, and the very clumsy feet. My legs hurt all the time, my voice is raspy when I wake up in the morning, and my bladder gets full quicker than usual. I am in the process of getting tested through my LLMD. I do not recall getting bit by a tick ever. Anyone experience this but it wasn’t ALS? I think the atrophy and the heaviness of my arms is the scariest. I would like to add that my hands are starting to become easier to use again and my walking has improved here and there.

Hi all!

I went for a walk in the woods (southern Ontario) on Friday and found this beautiful guy this morning (Tuesday) on my lower back when i was showering. Surprisingly not as fat as I was expecting so not 100% sure when it actually bit me

A friend helped me pull it out and said it looked like a dog tick but I’m too paranoid to trust him. It doesn’t look like the traditional “bullseye“ pattern but I can’t help but fear the light ring around the purple is indicative of something

If it’s helpful, I was bitten about a year ago on top of my head and nothing seemed to come from that.

I’m not feeling any different than I usually do aside from maybe the tiniest bit of soreness (only noticeable when thinking about it) and anxiety.

Any advice would be appreciated. Thank you!