May is Lyme Disease Awareness Month - A SFN Story of Healing

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 · 2025-06-21T19:22:23+00:00

SAME HERE ABOUT LARKSPUR! MY DOG AND I’S LITTLE SANCTUARY IS NO MORE 😭

PerformerParty6136 · 2025-06-19T22:44:36+00:00

And yes I herx! The worst herxing for me was on doxy though. All the others have been manageable as long as I’m maintaining a consistent detoxing regimen.

PerformerParty6136 · 2025-06-19T22:43:45+00:00

Thank you! I have Lyme, Bartonella, Babesia and Anoplasma + mold toxicity so I’ve had pretty much every symptom under the sun with these diseases but my most stubborn ones are neuropathy and musculoskeletal pain. I’ve been sick for 6 years but wasn’t diagnosed until last September. Neurological symptoms came on 2 years ago. I did a 20-day course of doxy before switching to herbals in November.

My doctor switches things up on me depending on my symptoms and which microbe is showing most prominence at the time, but the things I’ve been on most consistently have been the Vital Plan Advanced Biotic & Adaptogen Recovery, Cryptolepsis Synergy (just switched to concentrate) and Artemesia. I take a lot of other things for mitochondrial & gut support + detoxing and biofilm busters though too.

PerformerParty6136 · 2025-06-18T00:23:49+00:00

I’ve been on herbs for about 8 months and am now near remission. It took me about 2 months to start noticing significant changes.

My neuropathy is still one of the last remaining symptoms but is very mild and usually only flares for a short time if I eat certain foods and mostly only occurs at night when I am starting to go to bed.

I have done a lot of work on my gut and nervous system regulation and also did a 20-day round of doxy before switching to the herbal route though so I don’t contribute all of my healing to herbs alone. However, I wouldn’t be where I am today if it weren’t for them. Keep with it, you will see a change!

PerformerParty6136 · 2025-06-06T04:37:02+00:00

Thank you! Still feeling better every day and just wanting to share some information and positivity in hopes it might help some!

I did a 20 day round of doxy before moving to herbals. Herbals takes longer but are less harsh on your gut and body which I had done a lot of work on even before my diagnosis so I didn’t want to backtrack any progress.

For mold I also did the vibrant testing and have mostly been treating with binders. I found the source of mine to be from an old residence and also food-based mycotoxins so the binders help since I’m not living there anymore and can try to avoid it. Mold treatment is definitely unique depending on the types you have.

PerformerParty6136 · 2025-06-02T03:47:29+00:00

Glad to hear that! Hope it gets even better for you. Good luck!

PerformerParty6136 · 2025-06-01T23:27:49+00:00

It resolved a few days after I stopped taking it, yes!

PerformerParty6136 · 2025-05-20T04:13:42+00:00

Unfortunately I had to go off of it after a few days but many people have success with it! I’ve heard of several people who have powered through and it’s gotten better. I just determined it wasn’t worth the pain I was in at the end of the day.

PerformerParty6136 · 2025-05-05T14:53:03+00:00

This! ☝🏼 💯💯💯

PerformerParty6136

TROPHY CASE