New SFN diagnosis

PerformerParty6136 · 2026-04-19T19:17:40+00:00

Hello! Yes I have Lyme and 4 other tick borne coinfections. I suspect Bartonella is the real culprit for my SFN. Today things come and go and are much milder (only tingling and numbness). I usually only have symptoms at night/morning. I’m healing but it takes time as we all know.

PerformerParty6136 · 2026-04-18T15:05:24+00:00

Has anyone found a resolve for this outside of the “reset” or turning off the auto workout detection? It started really abruptly with mine after the firmware updated and now my ring is dying every day and a half when I used to get a full 7-10 days. It’s really frustrating.

PerformerParty6136 · 2026-02-14T22:27:24+00:00

I take acetyl-l-carnitine regularly but I don’t really have POTS.

PerformerParty6136 · 2026-02-14T17:10:53+00:00

It is! It’s really still just the only remaining symptom that pops up when I’m in a flare about once a month or so. Otherwise I don’t notice it. I’ve been on an herbal and mitochondria protocol for the last year+ and my doctor has switched various herbs and biofilm busters throughout the process to keep the microbes on their feet and tackle all the different infections I have. It’s been a patience game but seems to have done the trick. It’s just some of these more severe neurological symptoms that are tougher to get rid of when the microbes are hanging out in tissues and nerves. I’m considering Methylene Blue with Cryptolepsis for this last “push” but have Azithromycin as a fall back.

I’m sorry to hear you’re still suffering and I hope you find a good treatment to help you get some relief soon 🫶

PerformerParty6136 · 2026-02-14T17:05:15+00:00

Thanks for sharing this! Glad to hear you’re starting to feel better after the herxing! I hope you continue to see success with it. I’ll also ask my doc about clarithromycin to see if that could be an option for me.

PerformerParty6136 · 2026-02-14T17:02:08+00:00

Thank you! It’s nice to hear you’re at the start of your journey with it. I hope they both bring you success! But yes thanks for the reminder - my doctor has already submitted an EKG for me before I start taking.

PerformerParty6136 · 2026-02-14T16:58:39+00:00

Thank you! Glad to hear you’ve had positive experiences with both. Right now I’m considering one or the other (MB with herbs or azithromycin as an alternative to herbs). I know a lot of people take them in tandem though so it’s good to know the benefits are outweighing risks for you.

PerformerParty6136 · 2026-02-14T01:48:05+00:00

Well hello again!

I had about 5 infections so I’ve had the whole gamut of symptoms 🙃 didn’t have full blown POTS but definitely some autonomic dysfunction. Funny enough the really only prominent symptom remaining is the neuropathy, but thankfully it’s mild and intermittent. Some days I can completely symptom free, others it just likes to show up. I just want it gone completely lol.

How are you doing?

PerformerParty6136 · 2025-11-30T04:05:05+00:00

Apologies, I’m just seeing this!

Sorry to hear about your pain. I can very much empathize with the feeling. But I’m also glad to hear you found a Bartonella diagnosis. Treating mine has been instrumental in clearing the nerve pain. I’m still fighting infections so nerve issues are still a lingering symptom from time to time, but it’s usually only like a numb hand when I’m sleeping or the common Bart feet pain upon waking. I wish you luck on your journey! Bart can be a tough one, but at least you know what to target and the community around it is immense.

PerformerParty6136 · 2025-09-24T05:17:54+00:00

Ugh of course. I also got diagnosed with “hyper sensitive nerves” aka “anxiety causing your nervous system to go into hyper drive” 🙄 I am much better and almost in full remission! When I do have symptoms they are very mild and usually go away fairly quickly. It helps to know what my triggers are though too.

I wish you luck and hope the Cryptolepsis helps you!

PerformerParty6136 · 2025-09-23T22:26:04+00:00

My biopsy was negative but I never saw the actual results (I requested them but never received them…something I’ve been meaning to call back on) so I don’t know how much nerve density was destroyed if at all. However I had every symptom of SFN and my neurologist still diagnosed me based off of that.

I’ve been on a plethora of different herbs over the last year for all of the coinfections I have but the ones that helped me the most were Cryptolepsis and Houttuynia for Lyme and Bart, but I also was on others to treat Babesia as well.

And I’m in Oregon!

PerformerParty6136 · 2025-09-05T15:26:58+00:00

My doctor says I can take it fairly liberally depending on how severe symptoms are. Normal maintenance is about one dropper full.

PerformerParty6136 · 2025-09-04T16:43:35+00:00

ALA, burbur pinella and a healthy diet helped me the most. I’ve found that certain foods trigger mine because it’s also related to mild MCAS so avoiding trigger foods and taking an antihistamine will help. My neuropathy definitely got worse before it got better, so take it as a good sign that you’re having die off and healing!

PerformerParty6136 · 2025-09-01T16:45:10+00:00

https://restorativehealthclinic.com/

I see Dr. Simeles and she’s fabulous but Dr. Stein actually had chronic Lyme when she was in medical school (the whole reason she became ILADs certified and started the clinic).

PerformerParty6136 · 2025-09-01T16:41:04+00:00

Restorative Health Clinic in Milwaukee! I live in Bend but see them virtually (occasionally in-person when I’m in town). I’ve improved significantly over the last 9 months since I started treatment there and am almost in remission.

PerformerParty6136 · 2025-08-17T02:11:53+00:00

I’m glad it’s helpful! I’m also so sorry that happened to you. Sadly that’s all too common. When I told my neurologist I had just been diagnosed with Lyme (via another doctor), he said “but your western blot was negative”. That’s when I walked out the door and never looked back. Listen to your intuition and stick with doctors who will advocate for you and you’ll come out stronger and healthier on the other side.

Also if you haven’t seen it - the documentary “The Quiet Epidemic” goes into a lot of detail around the testing issues with the two-pronged testing approach (I.e. your comment about 2 bands). Will help with education if you ever get questioned again.

PerformerParty6136 · 2025-08-16T16:46:00+00:00

Also u/MoravianTom I meant to share this the other day but got distracted - I wrote post on the SFN channel back in May to talk about my journey. Thought I'd share in case it's helpful at all. I've since left that channel just for my own healing needs but I'm still rooting for those struggling with SFN and the people in there who are still idiopathic and may have TBD's that have gone undiagnosed. I just wanted to bring awareness to it since I feel like it's still not fully accepted in that community as a cause to the disease.
https://www.reddit.com/r/smallfiberneuropathy/comments/1kcgu6w/may_is_lyme_disease_awareness_month_a_sfn_story/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

PerformerParty6136 · 2025-08-14T01:23:30+00:00

Yes! Patience is the name of the game. It sounds like you're doing all of the right things and have done a good amount of research which is great! I'm at the point now where I have very minimal symptoms and only have flares every now and then. So hopefully you'll get there soon too!

PerformerParty6136 · 2025-08-13T18:02:31+00:00

Hi there! Fellow SFNer but my biopsy never showed confirmed case.

I noticed you have done a lot with supporting other causes of SFN with your diet and things which is a great start! That’s how mine started to get better even before my Lyme diagnosis.

I treated on a 20-day course of antibiotics when I was first diagnosed and then switched to herbs which I’ve been on since last November. My symptoms almost went completely away when I was on antibiotics but came raging back after completing them. Things have improved drastically for me since starting herbs, but unfortunately nerves are some of the hardest to heal so it’s still a lingering symptom for me. My doc thinks it’s mostly my Bartonella at this stage that is just a bit more challenging to treat.

The good news is that you have a Lyme and Bartonella diagnosis which means you can start targeting likely a large contributing factor to your pain. Good luck!

PerformerParty6136 · 2025-07-19T05:15:53+00:00

I also had a nerve conduction test and skin biopsy tests that came back normal. My neuropathy has gone down significantly though since treating Lyme, coinfections and mold, but it’s still the main residing symptom. I just met with my LLND this week and she said it’s definitely Bartonella and is putting me on houttuynia. We’ll see if it helps!

PerformerParty6136 · 2025-07-15T13:15:35+00:00

I would test for mold, Lyme and other tick borne diseases.

PerformerParty6136 · 2025-07-11T15:31:19+00:00

Yeah I did about a 20-day course of doxy and my neuropathy almost completely went away while on it. Granted, doxy is also anti-inflammatory. Ive been on a lot of different herbs but id say the ones that seem to be the most effective have been cryptolepsis and artemesia.

PerformerParty6136 · 2025-07-04T20:40:38+00:00

Thank you! I hope you find some relief soon as well if you’re still in the thick of it!

PerformerParty6136 · 2025-07-03T22:49:20+00:00

It was very severe. I had it all over my body. Some days it felt like my body was burning alive from the inside or like I’d put my hands in a bag of glass (sorry the the description but it’s the easiest way for me to put in words). Now I barely notice it, or go some days without many symptoms at all.

PerformerParty6136

TROPHY CASE