Does bartonella neuropathy go away??

Also that mylein shieth can repair at 1mm a week ...look at terry wahls ...paused it with low dose mino then feed the mitochondria. ...lyme and bart is a intercellular infection ....treatment has to outlast blood cells (120 days )and leave them no quarter ...bvt and h202 lyses bloods cells open ..maybe why it works

I pray you are right ..i was just regurgiting lou's literate neurologist ..but we all know they are no smarter than gerbils ...

Welcome Madisongrrl,

You came to the right place.

I just wanted to add that I use Sida Acuta consistently for nerve pain. I get a lot of buzzing in my feet and have constant nerve pain/numbness in my arms. It has helped me a lot with that. I have not tried the Lion's Mane as Traveler suggested but wonder if that would further the healing. The burning pain that I used to get in my feet is pretty much gone.

Something you could do is use the search button at the top of the page. Type in Lyme-nerve pain and you may get more ideas as to things you could do for help.

Best wishes for healing.

I forgot to say that I use Avena sativa (oats in the milky stage) and it helps lower the amount of "restless leg" symptoms that I get. My husband gets this bad as well, even though not due to these infections, but from another condition and he's now using the avena sativa as well, and says that it gives him more relief than the amitriptyline that he was using.

Yes, as a matter of fact, when I first tried avena sativa, I purchased it from Gaia herbs and was really surprised with it! If I'm having a lot of anxiety, I take it in very warm water and it's effects are felt nearly immediately, in cool/cold water, the effects come on more slowly and last longer for me.

But oats are so easy to grow, and this way I can save a ton of money, since it's a tincture I will likely be using it for a very long time!

Thank you everyone for your replies. I'll try to answer everyone's questions below.

My symptoms are extreme burning, I'm not sweating properly, I have temperature loss up my arms, skin hypersensitivity, warm water sensations, pins and needles etc. I was an elite mountain bike racer in Lyme endemic Wisconsin prior to all my medical problems. I had more tick bites in a week than most people experience in a lifetime, so there is no mystery how I got into this terrible situation.

My presentation of SFN is known as non-length dependent - meaning I have burning on my face and trunk in addition to my extremities. I'm on 2400 mg of gabapentin, 25 mg of Nortriptyline and 3mg of LDN, just so I can live my life....but it's difficult with all the searing pain.

My symptoms started acutely in FEB 2014 (but I had milder symptoms before that). Buring started in my ankle and spread over my body in a number of weeks. The pain was awful and I almost had to quit my job. It was all terrifying I was at urgent care and the ER several times. My primary (who I fired) told me that I had fibro, which is ridiculous. No one took me seriously until I finally got into the neurologist at the teaching hospital. I also experienced hyperacusis in my left ear, the nerve in my ear was damaged so my balance is off, and I have atypical face pain (trigeminal neuralgia type 2). My PT who specializes in neurology wants me to see an autonomic cardiologist because she thinks I have damage there as well.

Lyme was found via the iSpot test. I started oral antibiotics in OCT 2015 and did them for 1 year. I recently had a PICC line placed and have been doing IV antibiotics for the last 3 weeks. MY LLMDs want me to do IV for 3-6 months. So far my hands have gotten better, the burning on the back of my head has stopped and my atypical face pain continues to improve....but I have a long way to go.

Small fiber neuropathy is immune-mediated per all the top LLMDs - Dr. B, Dr. H, and Dr. J, which is why they all recommend IVIG and have never seen people it heal without it. There are no to little myelin in your small fiber nerves (A delta and C), which means they take a longer time to heal than someone who has large fiber damage (which I have damage in my peroneal nerve too). And they don't always grow back in the same way, which leaves some people with symptoms.

Here is one of the best graphics that explains how all nerves are constructed.
VIEW IMAGE

Dr. J talks about SFN and IVIG.
lymemd.blogspot.com/2013/04/peripheral-neuropathy-very-common-lyme.html

Dr. J with a complex CIPD patient.
lymemd.blogspot.com/2009/01/lyme-and-cidp.html

Scroll down to #12. Dr H. talks about SFN, CIPD presentations, and resistant neuropathies. He also talks about immune mediated SFN in his book, Why can't I get Better?
/travelerslymelinks.wordpress.com/2016/04/23/dr-richard-horowitz-question-and-answer-session-5112015/

I've also heard Dr. H say that the myelin on your large fiber nerves looks like the tail of the flagella. Your immune system gets confused when it goes after it and creates antibodies against the myelin, which is how it gets damaged.

I appreciate all your personal stories and ideas how to approach this neuropathy problem. I'm encouraged that many of you have improved your health situations. I'm going to take all your suggestions listed in this thread to heart and start trying some of these things. I definitely look forward to participating on this message board.

Post Edited (madisongrrl) : 11/1/2016 8:22:08 PM (GMT-6)

Nerves will regrow, I experienced that after slamming my hand thoroughly in a car door not too many years ago. But of course the more of the nerve that has died, the longer it will take to regenerate.

That is good to know about Lion's mane Traveler, thanks for the additional ideas bluelyme, I've got to get my Dr. back on board with the B12 shots. My insurance tried to make it complicated, and when my routines get stonewalled, I don't like hassles and I have to just leave it alone to keep from overstressing.

Madisongrrl my sister had REALLY SEVERE NEUROPATHY for months. It was literally on her while body and none of the herbs etc worked. So it got to the point where she said it felt like her whole body got poured gasoline on it and she was set afire. We no joke took her screaming and screaming to the emergency room. They tried opiods even which did nothing but thankfully ❤❤❤❤❤❤❤ gabapentin worked like a miracle for her in about a week!!! Also her antibiotics (rifampin, tini, and azrithomycin) have also helped as time has passed she needs less gabapentin. But her neuropathy is pretty much nonexistent now

Yes it was very severe. If she stops taking her antibiotics though the neuropathy flares a lot the gabapentin alone doesnt take care of it. Have you tried lyrica? She takes about 1,200 mgs a day but before it was much higher

Madison it was actually very mild before she started the antibiotics but after taking azrithomycin daily and accidentally skipping a day when she took it I guess some cysts exploded or something, because in one day the neuropathy came out of nowhere and it steadily got worse over the course of maybe a month and a half before we had to go to the emergency room.

I have been burning for 11 months ..... I just want to die sometimes.😢😢😢

Most of the times periods now...

Girlie said...
Hmmm...maybe I should start taking the sida acuta again...thanks for sharing that, Denikeef!

I thought the same thing! Going to add it back in and see if it helps with the buzzing in my feet and the shaking sensation in my trunk at night. I did lion's mane for awhile and decided to stop because I wasn't sure if it was doing anything and I was tired of taking so much stuff. Think I will add both back in.