Trigemial Neuropathy

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intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/17/2017 4:57 PM (GMT -7)   
Has anyone suffered from this as a result of Lyme adieease and if so once treatment began how long did it take to resolve?

intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/17/2017 5:00 PM (GMT -7)   
I ask because I am 4 weeks in to abx and really struggling. I can't go about my normal day as I am in constant discomfort - ranging from pressure in the upper and lower jaw, burning in the gums, aching and full tongue numbness.
500mg Oxytetracycline 4x Daily.
500mg Cefuroxime 2x Daily.
400mg Metronidazole 2x Daily.
60mg Codeine Phosphate (320mg max.)
Diagnosed via C6 ELISA (western blot neg. all bands) May 2017
Main Symptom - Perpherial Neuropathy in mouth and "boxer short region"

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27867
   Posted 6/17/2017 5:25 PM (GMT -7)   
intrepidakira - i'm sorry you are dealing with this. I don't have that...but this will bump the thread back up to the top for more views.
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

intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/17/2017 5:27 PM (GMT -7)   
Thank you Girlie. Each day I live with this it's getting harder.
500mg Oxytetracycline 4x Daily.
500mg Cefuroxime 2x Daily.
400mg Metronidazole 2x Daily.
60mg Codeine Phosphate (320mg max.)
Diagnosed via C6 ELISA (western blot neg. all bands) May 2017
Main Symptom - Perpherial Neuropathy in mouth and "boxer short region"

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27867
   Posted 6/17/2017 5:30 PM (GMT -7)   
Is your LLMD going to have you try a bartonella protocol at some point?

It could be bart causing those symptoms.

Are you doing enough to detox?
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

intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/17/2017 5:35 PM (GMT -7)   
I was tested for Bartonella and negative for both IgM and IgG.. I am on Doxycycline at the moment; wouldn't that help with a Bartonella infection?
500mg Oxytetracycline 4x Daily.
500mg Cefuroxime 2x Daily.
400mg Metronidazole 2x Daily.
60mg Codeine Phosphate (320mg max.)
Diagnosed via C6 ELISA (western blot neg. all bands) May 2017
Main Symptom - Perpherial Neuropathy in mouth and "boxer short region"

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27867
   Posted 6/17/2017 5:55 PM (GMT -7)   
intrepidakira said...
I was tested for Bartonella and negative for both IgM and IgG.. I am on Doxycycline at the moment; wouldn't that help with a Bartonella infection?


Don't rely on the testing...many, many false negatives.
Many LLMD's will treat lyme,bart and babs to cover all bases.

It's rare for lyme to travel alone. (if it ever does)

Doxycycline alone won't be good enough for a chronic bartonella infection.
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

intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/17/2017 5:59 PM (GMT -7)   
What is the best treatment for Bartonella?
500mg Oxytetracycline 4x Daily. (4 weeks - completed)
500mg Cefuroxime 2x Daily. (4 weeks - completed)
400mg Metronidazole 2x Daily. (2 weeks - completed)
Doxycycline 200mg 2x Daily (current)
60mg Codeine Phosphate (320mg max.)
Diagnosed via C6 ELISA (western blot neg. all bands) May 2017
Main Symptom - Perpherial Neuropathy in mouth and "boxer short region"

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27867
   Posted 6/17/2017 6:02 PM (GMT -7)   
I believe the fluoroquinolone class of abx is most effective (cipro and levaquin) BUT - many some LLMD's don't prescribe them (unless last resort) because of the black box warning label: Risk of tendon rupture and peripheral neuropathy.

The next ones are Riampin or Rifabutin.

They do need to be paired with another antibiotic - some choices are: minocycline, biaxin, Azithromycin, doxycycline, bactrim ds (maybe Ceftin/omnicef or amoxicillin?)
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

intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/18/2017 1:59 PM (GMT -7)   
I am seeing my GP tomorrow so will ask for some cipro as the doxy is making me very sleepy, itchy and I think it is actually making me depressed! I've heard the tetracyclines can do that.

My neurological symptoms have become transitory over the last few days, waxing and waning. Hoping this is a step towards them resolving. Fingers, legs, arms, toes and everything else crossed!
500mg Oxytetracycline 4x Daily. (4 weeks - completed)
500mg Cefuroxime 2x Daily. (4 weeks - completed)
400mg Metronidazole 2x Daily. (2 weeks - completed)
Doxycycline 200mg 2x Daily (current)
60mg Codeine Phosphate (320mg max.)
Diagnosed via C6 ELISA (western blot neg. all bands) May 2017
Main Symptom - Perpherial Neuropathy in mouth and "boxer short region"

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27867
   Posted 6/18/2017 2:38 PM (GMT -7)   
intrepidakira said...
I am seeing my GP tomorrow so will ask for some cipro as the doxy is making me very sleepy, itchy and I think it is actually making me depressed! I've heard the tetracyclines can do that.

My neurological symptoms have become transitory over the last few days, waxing and waning. Hoping this is a step towards them resolving. Fingers, legs, arms, toes and everything else crossed!


What about Rifampin? It's less 'risky' then the Cipro.
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

intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/18/2017 4:44 PM (GMT -7)   
I think you might be right. Cipro has the side effect of neuropathy. I don't need anymore of that - I've had my fill over the last year. Thank you for the suggestion. This board has been so helpful. smile

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 948
   Posted 6/18/2017 5:35 PM (GMT -7)   
You may consider getting checked by a biological dds-this could be a cavitation

intrepidakira
New Member


Date Joined Jun 2017
Total Posts : 17
   Posted 6/19/2017 6:58 AM (GMT -7)   
As part of my investigations I've had an MRI, a face x-ray and a CT scan. None of the shade any gaps holes or abrasions... this is what has led them to believe that it is a neuropathic condition being aggravated by some underlying illness.

Thank you for your suggestion though 😊

Milocat
Regular Member


Date Joined May 2017
Total Posts : 36
   Posted 6/19/2017 1:43 PM (GMT -7)   
I struggle with this symptom and herx often. Not sure if it's due to lyme or bartonella or both. I've tested negative for bart, but am treating based on symptoms. I've used more herbs than antibiotics, the herbs that give me a drastic trigeminal neuralgia herx are japanese knotweed, andrographis and the CSA combo (cryptolepis, sida acuta, and alchornea). After getting over the initial herx with these herbs, my symptoms really improved, it took about 3 weeks-2 months to really see results.
If you are doing the herb route be sure to increase your doses very gradually and make sure you are detoxing A LOT!
Good luck, I know this symptom is super painful!

madisongrrl
Regular Member


Date Joined Oct 2016
Total Posts : 230
   Posted 6/19/2017 6:56 PM (GMT -7)   
intrepidakira said...
As part of my investigations I've had an MRI, a face x-ray and a CT scan. None of the shade any gaps holes or abrasions... this is what has led them to believe that it is a neuropathic condition being aggravated by some underlying illness.

Thank you for your suggestion though 😊


MRI and CT can't see everything in your TN nerve. TN type 2 or atypical face pain is caused by damage to small fibers (ophthalmic branch of your TN nerve has small fibers). This is a diagnosis of exclusion, generally.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 948
   Posted 6/19/2017 8:01 PM (GMT -7)   
You may consider seeing a biological dds who uses a cavitat or EAV.
Often a dds will not see issues using other methods
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