small fiber neuropathy/neurological issues/damages caused by lyme

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Dog lover556
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/27/2017 7:17 PM (GMT -6)   
Hello my girlfriend has been struggling with Cronic Lyme for ten years now. She is about to undergo another IvIg treatment that seems to be a reoccurring procedure she has to do annually . Does anyone know if the nerve damage eventually heals ?

Girlie
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Date Joined May 2014
Total Posts : 33965
   Posted 12/27/2017 8:19 PM (GMT -6)   
Hi Dog lover - welcome to our community.

I'm so sorry your wife is suffering with the sfn.
I also have nerve pain..not been identified as sfn though.

Is she still treating? Or in remission and the sfn is leftover damage? I'm just wondering if it's possible still active infection.
Does she get a good response with the IVIG?

I do know nerves take a long time to heal...as in years sometimes.
I'm not sure if all nerves do heal - I think it depends on how badly they are damaged and for how long.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

April23
New Member


Date Joined Dec 2017
Total Posts : 1
   Posted 12/28/2017 12:29 AM (GMT -6)   
I'm convinced that it can. In fact, I now think that the nerves likely are not even damaged, but that the pain is a simply a result of their being constantly under attack by the Lyme and/or co-infection(s). I came to this conclusion because of an astonishing thing that happened to my mother last week. She's suffered from neuropathy for over 20 years since contracting Lyme disease. Her worst symptom has always been painful peripheral neuropathy in her hands, feet and legs. It initially started in her fingers and soles, then progressed and has become more and more painful over the years.

Then the astonishing thing happened. Last week she was given Bactrim (which she'd never had) for a suspected UTI. She had terrible side effects from it, so we stopped it after three doses. The day after the third and last dose, her neuropathy completely disappeared! We don't know why, but my best guess is that the Bactrim zapped a co-infection that's been causing the neuropathy all these years. She's never had Bactrim, which isn't very effective against Lyme, and has taken several other antibiotics specifically for Lyme that haven't helped her neuropathy much. So, in her case, I think the neuropathy has been caused by a different bug. It's coming back now (obviously, three doses wouldn't have been enough to kill of whatever's causing it) - but the point is, after 20 years of neuropathy, the nerves weren't damaged. Once the bug was zapped that caused it, all the feeling came back with no pain!

Now we need to figure out which co-infection is causing the neuropathy and find out how to treat it (with something other than Bactrim, of course - the side effects were horrendous).

Also, Dr. Horowitz (New York Lyme expert) reports many cases of neuropathy having been resolved after the Lyme and/or co-infection(s) have been successfully treated.

So take heart! I really think that if your girlfriend can get well, her nerve pain will go away.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 12/28/2017 1:35 AM (GMT -6)   
Hi April, welcome to our community.

Bactrim is effective for lyme. It also can be used to treat bartonella (co-infection) - although not as good as Rifampin.

Rifampin (or Rifabutin) would be an option if you're wanting something to treat bartonella.


Are you certain it was side effects she was experiencing from the bactrim...and not a herx?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1305
   Posted 12/28/2017 6:26 AM (GMT -6)   
Have you treated parasite?

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2556
   Posted 12/28/2017 9:27 AM (GMT -6)   
I just wanted to echo what Girlie said - Bactrim is actually a very good drug for Lyme and can also be somewhat effective on persister cells (according to dr. h).

Dog Lover - I have neuropathy (but it's not painful). Mine is numbness, burning, buzzing. It has gotten better over time but still comes and goes.

Does the IVIG help her? Is she doing anything else to treat lyme disease?

Dog lover556
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/29/2017 3:48 AM (GMT -6)   
Hey everyone ,

Thank you for the replies ! This gives me hope ! IvIg does help but seems to only help for a little while . Happy New year everyone !

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 95
   Posted 12/29/2017 8:16 AM (GMT -6)   
Does Lyme/ Bart cause tongue to tingle, mild but constant, plus jaw/chin feels like tremors or tingling all day, very fine but there!
My hands also visibly have a fine tremor too
I only get relief when asleep.
I get alot of tingling pains in my legs like pins and needles.
Does successful treatment resolve this please?
Thanks for any feedback



Also does the Lyme affect your digestion,as l feel either starving hungry, or totally not interested in eating,by turns
Really my body feels quite out of control!

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1355
   Posted 12/29/2017 8:30 AM (GMT -6)   
Yeah hard to say. But when I treat I have noticed temporary cessation of my nerve pain. My feeling is that nerves can heal quite well when not impeded by things like chronic inflammation. The hard part is getting rid of the little ****s that are causing it. Of all my symptoms it has been the most stubborn. Again, not because they can't heal, but because I can't seem to get my treatment there. For example I take my knotweed and herx bad all over my joints and muscles and heart and then my symptoms get better as the herxing stops. But nothing in my nerves. Only a few things have caused neuroherxes (cryptolepis and sida acuta). And unfortunately I don't think they're very effective long term because my disease seems to become rapidly resistant much like people report with doxycycline. 3 drops I'm herxing bad. two days later 6 drops I'm herxing a little. Then up to 30 drops over the week and no reaction what soever and no remission. When I take those 30 drops at once I could land myself in the hospital bed. So it seems like a drug tolerance. By contrast knotweed continues to be effective as I up the dose. Just gotta find something that works long term and goes deeper into my nervous system. But yes the short of this ramble is that I have experienced periods of my nerve pain reducing substantially with treatment which wouldn't be possible if the damage were permanent imo. In fact, the reduction in pain is literally overnight when it does happen. Certain animals build nerve fibers much quicker after damaged and it's linked to timely phagocytosis of dead cellular debris. In other words a healthy immune system is just as important in the rebuilding process

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2556
   Posted 12/29/2017 9:04 AM (GMT -6)   
Lions Mane may be something she wants to try for nerves. Some say it works, I didn't really notice much but have not stayed on it longer than maybe 3 months.

I too find that I backslide when I stop taking the herbs. It takes a few months but the neuropathy creeps back it. The combo of japanese knotweed, cats claw and andrographis helps a lot. I think the main contributor is the knotweed.

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 882
   Posted 12/29/2017 10:07 AM (GMT -6)   
April23 said...


Now we need to figure out which co-infection is causing the neuropathy and find out how to treat it (with something other than Bactrim, of course - the side effects were horrendous).

Also, Dr. Horowitz (New York Lyme expert) reports many cases of neuropathy having been resolved after the Lyme and/or co-infection(s) have been successfully treated.

So take heart! I really think that if your girlfriend can get well, her nerve pain will go away.


brucella, which is a lyme co-inf, is treated with bactrim. so that is something to look into and get tested for for sure
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