Good articles on neuropathy/autoimmunity questions

If you have autoimmunity and neuropathy you probably have small fiber neuropathy. This isnt a guess, autoimmunity often leads to SFN, and if youre having neuropathy and you have an autoimmune disease I'd put hte odds of this being autoimmune SFN >70%. This is NOT something to mess around with, and if its gotten to that point antibiotics alone wont cure it. You need to see a neurologist immediately.

All that being said, maybe you have looked into all this already. Just wanted to get that info out in case you hadnt. If youve looked into SFN, did they do a biopsy? Describe your autoimmune diseases and symptoms?

And I don't have diabetes btw..Seem to show up when I do a google neuropathy search..

Girlie said...
A skin punch biopsy is used to diagnose the SFN.
Emg and ncs can’t diagnose it.

Thanks!

Do you know how they usually treat it?

Also read that some of Buhners herbs is supposed to be good for this..

RJD76, the only way to confirm SFN (small fiber neuropathy) is through a punch biopsy. The EMG test will only check your LARGE nerve fibers, which are almost always normal. Based on what you told me, the exact symptoms and the fact that it never stops and where its located, this sounds like SFN, probably due to autoimmunity. Bartonella can also cause nerve pain like this.


You DO NOT mess around w/ SFN. You need to get this diagnosed asap. Assuming its autoimmune, the best treatment is IVIG. The quicker you catch it the better. It will take time to get approval form insurance because its costly.

I would say do not bother with Buhner herbs for now. If it is SFN and it is autoimmune, they can be added later and may be of some benefit assuming you know how to use them, but they are not a cure in themselves. The single most important thing you can spend your time doing right now is getting a proper diagnosis.

I'm very experienced with SFN and it may make sense to email privately or talk on the phone. It's not a fun diagnosis and can be overwhelming, but there are things they can do. email me you can get my address from my profile

Post Edited (dcd2103) : 1/13/2020 12:08:04 PM (GMT-7)

sdarrah,

If you click on my forum name - to the left - my email address will come up.


I will look for your email this evening.

Hey saraeli,

Well I should state there are so many causes for SFN. From ion channel gene mutations to bacterial to diabetes to cancer to autoimmune. I was assuming his is autoimmune, like mine, given the severity and unrelenting symptomology, but I admit that is a large assumption.

It’s been my impression from talking to multiple experts in the NYC area, two of whom are LLMDs, that when the cause is autoimmune (Or autoimmune/autoinflammatory caused by an infection) that these things do not reverse on their own. Even the famed Dr H in his book Why Can’t I get Better says that IVIG is the preferred treatment for SFN in his patients, although he mentions antibiotics are sometimes needed in concert to remove the trigger. Dr H also mentions Dr Y as being one of the foremost experts on this area, and Dr Y concurs IVIG is needed, I’ve been to see him. Pretty much unless the cause is genetic or diabetes, they will use IVIG. I’ve written in these boards a few times and explained the pathology behind autoimmune SFN. It’s thought of as being a B Cell mediated disease, part of the immune system which has memory, and that memory is very hard to erase.

Now ive seen others state that Bartonella and Lyme can cause nerve pain that I guess is technically SFN (in that it affects the small nerve fibers) but isn’t autoimmune, and it heals with treatment of the underlying bacteria like any other symptom. But this from my experience is generally much milder, more transient and wandering like you said, and probably won’t show up in a biopsy.

I guess it’s hard to explain, but from my experience when most people and drs talk about SFN, they’re referring to what I’m talking about which is a chronic PROGRESSIVE disease, not just another symptom of Lyme, if that makes sense? If you google it the description of progression and the prognosis should be similar to what I described, although I don’t google it anymore I’m too afraid I know its a scary diagnosis and my life is changed forever because of it.

Ugh that’s the rub. There’s no actual test. Generally they look for signs of autoimmunity like a positive ANA, any antibodies against connective tissue disorders, low WBC/RBC, low complements. Then they try IVIG and if it responds it’s probably autoimmune.

Did you have a positive punch biopsy? Any signs of autoimmunity? Is your nerve pain stocking and sleeve or everywhere? Describe it. Has it gotten worse over time? Do you feel reprieve from antibiotics or do you feel like most supplements make it worse?

I feel like I've hijacked this thread (sorry, Tommy) but I appreciate the advice, dcd! I can tell this is something you have looked into a lot.

I have no autoimmune markers, not sure about antibodies against connective tissues, normal WBC, nearly high RBC, normal or high complements. Never had a punch biopsy. My main symptom of autoimmunity (as far as I can tell) is that I get ligament pain and neuropathy flares when I take echinacea and elderberry regularly. Pain mostly in my fingers and backs of hands. Rarely tops of feet and forearms as well. Definitely aggravated by cold, injury, and strenuous use (like hand sewing or weeding). It has come and gone several times over the past year and started with tingly feelings after a virus. Trouble telling hot from cold was common for me when I first got Lyme four years ago but not since. Peripheral neuropathy seems to flare when I am herxing (from the inflammation) so I suppose active treatment makes it worse, but I have not done much antimicrobial treatment this year.

I don’t have a compressed disc.

The area of nerve pain is the first symptom I had and is the most difficult to irradicate.

I did have frozen shoulder but it’s not frozen anymore - all range of motion is back - but can’t shake this nerve pain.

It is better some days - so I’m hoping that is a good sign.
I have days where I’m pain free for many hours. But those days are not regular - ie maybe one or two days a week.

dcd2103 said...
RJD76, the only way to confirm SFN (small fiber neuropathy) is through a punch biopsy. The EMG test will only check your LARGE nerve fibers, which are almost always normal. Based on what you told me, the exact symptoms and the fact that it never stops and where its located, this sounds like SFN, probably due to autoimmunity. Bartonella can also cause nerve pain like this.

You DO NOT mess around w/ SFN. You need to get this diagnosed asap. Assuming its autoimmune, the best treatment is IVIG. The quicker you catch it the better. It will take time to get approval form insurance because its costly.
I would say do not bother with Buhner herbs for now. If it is SFN and it is autoimmune, they can be added later and may be of some benefit assuming you know how to use them, but they are not a cure in themselves. The single most important thing you can spend your time doing right now is getting a proper diagnosis.
I'm very experienced with SFN and it may make sense to email privately or talk on the phone. It's not a fun diagnosis and can be overwhelming, but there are things they can do. email me you can get my address from my profile

Thank you, dcd2103!

I will probably send you an email later if that is OK. I will see my doctor monday next week. I'll ask her to refer me to a neurologist once again for the skin biopsy. This will go through my insurance I have at work so I'll have that covered. I'll probably have an appintment within the next 10-15 days. If the test comes out positive and they decide to treat, i'm not sure if that will be covered though..We'll see. I've had my leg/neuro symptoms probably for 2 to 3 months maybe a little more. I recall my ANA test came out negative about 7 months ago, but there was another test that was slightly positive. Cannot remember what it was. Somewhere I read that if you have SFN they will not treat if it is genetics or if you have diabetes.

Anyways, hopefully I will get the test done soon. I will get back to you on your email.

Thank you!

WbF - I have taken JK early on (years ago)
and more recently DrJ prescribed it... I need to order it - I am going to do an order with Woodland Essence - as I need Cryptolepis as well.

You think it could help my nerve pain?

I’m now worrying that maybe there’s something structural going on... in that area.

WbF
My husband will be happy you mentioned DMSO. He’s been using it for many years on injuries with amazing results.

I did try it early on - before diagnosis - but maybe it wasn’t effective because of the high bacterial level at the time

Re: Injury - My journey did start with an event - but when I was finally diagnosed with lyme - I assumed that it was lyme from the get go.
Maybe I did have an injury when I first went to the ER in 2013 - IDK