Who has non-stop nerve pain?

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bdoc
Regular Member


Date Joined Feb 2013
Total Posts : 126
   Posted 6/24/2015 6:11 PM (GMT -6)   
Just curious if anyone is experiencing similar symptoms. I treated for 9 months with IV abx, and have switched to pulsing oral abx. The biggest problem I have now is non-stop nerve pain (severe!) from my knees up to places unmentionable. The only relief I have is from taking Kratom. I thank God I found Kratom 3-4 months ago. Any thoughts on whether or not this is a herx, or is it from damage done by abx, or something completely different. Any and all opinions welcome. Thanks!

candleinthewind
Regular Member


Date Joined Mar 2015
Total Posts : 298
   Posted 6/24/2015 7:45 PM (GMT -6)   
Oooooo, I had nerve pain, it hurts! I remember that very well.

For me it was a herx, lasted a couple months...

Hopefully you're getting to the end soon..

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 6/24/2015 8:11 PM (GMT -6)   
I have nerve pain - but mine started before antibiotics...it was one of my first symptoms.
So, I know mine wasn't caused from the antibiotics.

At what point in treatment did the nerve pain start?

What is Kratom?
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

sweetpeaisme
Regular Member


Date Joined Feb 2015
Total Posts : 498
   Posted 6/25/2015 1:09 AM (GMT -6)   
What do you mean nerve pain? Is it like a pin trickling, because I get that. I have sciatica(hip/buttocks) nerve pain, and it feels like a nerve is being pinched in right elbow...Oh and when I sit on the toilet too long, my legs from feet to waist are completely 'asleep', which is nerve pain-it hurts! Oh I've also had a few isolated incidence of pin prickly sensations on top of head! Oh and my arm falls asleep when using the phone, or laying on it. Is that nerves?

bdoc
Regular Member


Date Joined Feb 2013
Total Posts : 126
   Posted 6/25/2015 4:53 AM (GMT -6)   
My nerve pain started right after I started treatment. However it's gotten worse as I've progressed in my treatment. It's at the po my nerve pain started right after I started treatment. However it's gotten worse as I've progressed in my treatment. It will not go away. It feels like burning lava under my skin. I also have a lot of "night sweats" which I think might be babesia? Kratom has been a miracle find for me. It's an herb that is a natural pain killer. It works better than opiates. It's helped me cut my pain meds/narcotics by 90%. Google the phrase "Kratom bible" and you will get a real nice summary of how it works. Let me know if you need more info. I've had success ordering mine from Kratom Underground, GreenLeaf Kratom, and PA Botanicals. Odus Kratom is another good one. I take it at least 3 times a day. My pain when I wake up is at an 8/10. 20 minutes after taking Kratom I'm at a 2/10. It's really awesome.

Bellyfull
Veteran Member


Date Joined May 2015
Total Posts : 633
   Posted 6/25/2015 5:04 AM (GMT -6)   
~bdoc

Can you share about your experience with Kratom... i have been very curious about it... yet still nervous to try. It sure would help to read first hand experience.

I know nerve pain very well... as i have had it from another condition for many years. I have been on vicoden for ten years now... and would like to stop taking it.

The pain in my knee is the worst... i can't imagine how it would be if i were not taking vicoden... i also take lyrica(which for me was a miracle drug)... but now i have developed a tolerance.

So yes...would very much appreciate hearing about your experience with Kratom... Thanks :)
When i come across an obstacle on the road to recovery.. I will want to figure a way around it, or how i can get over it.
But the greatest healing happens for me when i choose to go through it... to look deeper.. to listen to my own instincts.
And to learn from those that have traveled this road before me.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4427
   Posted 6/25/2015 6:40 AM (GMT -6)   
Hi bdoc,

Sorry you are having nerve pain.. I used to have nerve pain (my legs and all over my body) and found out that it was caused by neuro toxins. What helped me besides the detox baths, sauna, etc. was Dr. J's Neuro-Antitox CNS/PNS formula because it bound up not only the ammonia toxins but other toxins as well.

Are you on any detox regime?

I believe it's wise to get to the root of the problem (i.e.: toxins) so a person can start getting rid of those nasty toxins that cause so many varieties of pain and other problems.

Hope this helps,
Denise
9 years well ~ used Dr. Jernigan's protocol from his book about Biological Medicine. Green Vibrance only

I still detox even though healed. I come back to help others for others helped me when I was sick. Pay it forward! :-)

http://javuviews.wordpress.com/2013/04/24/how-i-became-better-from-chronic-lyme

Bellyfull
Veteran Member


Date Joined May 2015
Total Posts : 633
   Posted 6/25/2015 7:18 AM (GMT -6)   
I am doing well on the anti-tox ... feel incrementally better each day... brain fog lifting, severe shoulder/neck pain diminished...very grateful for that.

But the knee pain is flaring since beginning infra red sauna... i tend to think it is a herx.

And i think the dry skin brushing is a key factor... because i forgot to do it before the sauna last night...and the knee pain is not so severe today... which further validates my herx theory.

I believe herxing is a good thing... but there is a balance to be found.
I do not intend to stop dry brushing or the sauna... but... would like to
find safe pain relief.

I have been dealing with arthritis in my spine and nerve damage from failed spine fusion... which can be intense pain at times.
I am fortunate that i have had "training" in dealing with chronic pain...
so it does not "throw me for a loop"... emotionally.

It still surprises me that the knee pain is more intense than the spine pain ever was. The other day i was grimacing, walking to bathrm and then kitchen...with one leg straight to lessen the "ice pic thrusts" into my knee.

Realizing that it was a herx... i found myself saying out loud to the pain
"Bring it on Blitch!" allowing myself to express that justified anger was therapuetic imo ... and made me laugh at myself.

Whats next? Donning boxing gloves lol.

*Afterthought... now im thinking about hangin a pair of boxing gloves on my bedrm wall... sometimes i just crack me up....humor is therapeutic as well!
When i come across an obstacle on the road to recovery.. I will want to figure a way around it, or how i can get over it.
But the greatest healing happens for me when i choose to go through it... to look deeper.. to listen to my own instincts.
And to learn from those that have traveled this road before me.

Tunaaa
Regular Member


Date Joined Apr 2015
Total Posts : 39
   Posted 6/25/2015 9:16 AM (GMT -6)   
Which ABX did you take? Some of them can definitely cause nerve pain

bdoc
Regular Member


Date Joined Feb 2013
Total Posts : 126
   Posted 6/26/2015 5:48 AM (GMT -6)   
Deejavu and Bellyful: thanks for the ideas. I will definitely try the Neuro-Antitox. I've also gotten away from taking something called "LOLA" which gets rid of ammonia in the body. I guess I probably need a few more things for my detox protocol, right? With regards to kratom, my experience has been amazing. It has saved me over the last bunch of months. I go from being unable to function to ready to go take on the world because of kratom. I must have found it reading through a bunch of forums and Facebook pages like this. IF you look at my previous post, I list the companies that I've purchased it from. I just need to make sure that I never run out. I try to buy a variety of the "flavors" because I'm still in the trial and error phase to see which strain works the best for me. That said, the 'reds", like Red Maeng Da and Red Borneo are the best for pain. Bentuangie is another great red strain for pain. I take about 3 teaspoons(maybe a little more) each time. This may sound weird, but I "parachute" it. Essentially, i get 3 separate squares of thin toilet paper(I know that sounds strange). I put a teaspoon on each square. I wrap up one square at a time and place it on my tongue, and then chug it down with water(hopefully without the toilet paper breaking open because it tastes pretty gross and you will cough a lot trying to wash it down). Let me know if you need more. I cannot recommend kratom enough.
TUNAAA_ I've pulsed a lot of different abx. I'm currently not on any and I'm seeing my doctor again next Tuesday.

Bellyfull
Veteran Member


Date Joined May 2015
Total Posts : 633
   Posted 6/26/2015 5:56 AM (GMT -6)   
~bdoc

Is your doctor aware that you are using kratom? Is it a LLMD? just curiosities popping in my mind while gathering info.

Thanks so much for sharing about the kratom.

I had thought about buying the plant... to help avoid running out...which is pricey...but i would need to find the right type for me...before making that investment...otherwise it would become a horribly over priced houseplant...lol
When i come across an obstacle on the road to recovery.. I will want to figure a way around it, or how i can get over it.
But the greatest healing happens for me when i choose to go through it... to look deeper.. to listen to my own instincts.
And to learn from those that have traveled this road before me.

bdoc
Regular Member


Date Joined Feb 2013
Total Posts : 126
   Posted 6/26/2015 2:18 PM (GMT -6)   
Yes I did tell my doctor I was taking it and he is an LLMD. I think he thought it was interesting and took some notes down.

Bellyfull
Veteran Member


Date Joined May 2015
Total Posts : 633
   Posted 6/26/2015 6:23 PM (GMT -6)   
Very interesting... thanks again... its good to have these options in my arsenal.
When i come across an obstacle on the road to recovery.. I will want to figure a way around it, or how i can get over it.
But the greatest healing happens for me when i choose to go through it... to look deeper.. to listen to my own instincts.
And to learn from those that have traveled this road before me.

ValentineBaby
Regular Member


Date Joined Dec 2013
Total Posts : 95
   Posted 6/26/2015 6:51 PM (GMT -6)   
Horrible nerve pain in feet, shins and hands & wrists. Also pin prickling internal vibrations from abdomen down through legs. I was recently diagnosed with small fiber neuropathy. It is horrendous, especially at night.

bdoc
Regular Member


Date Joined Feb 2013
Total Posts : 126
   Posted 6/26/2015 8:24 PM (GMT -6)   
Belly full. Just do it

Sniogra
Regular Member


Date Joined May 2015
Total Posts : 202
   Posted 6/26/2015 10:38 PM (GMT -6)   
Deejavu- I just ordered Dr. j's neuro antitox CNS based off of your recommendation. I believe the neurotoxins are causing my nerve pain as well. It's worse on the days I don't detox enough. Did you notice it helping you right away or did it take some time? I have yet to try saunas either. Would you say that was also beneficial? I do detox baths, dry brush, and drink lemon water but think I need to up my detoxing game.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1896
   Posted 3/19/2018 3:38 PM (GMT -6)   
bumping because I am experiencing sciatica nerve pain all day today. My hips, butt and sometimes leg. It's not severe but painful enough to be really annoying and make it difficult to sleep.

I just stated a new herb protocol/brand. It contain many herbs that I have taken often the last 2 years. However there are 2 herbs in it that I've never taken before.

It cautions in the direction to start with 5 drops per day and work your way up every 3 days with 5 more drops (until you reach 40 drops).

Thinking I'm a herb veteran I went from 5 drops to 15 drops to 30 drops in like 10 days. This weekend was my first 30 drop days and today I wake up with sciatica nerve pain.

If I back off the herbs will this dissipate? Is this just herxing? I just hope it doesn't last forever.

Edit: I experienced this symptom before in the first few months of lyme. It's been almost 2 years since I had this symptom. I'm a little worried.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1896
   Posted 3/20/2018 7:12 AM (GMT -6)   
What have others done to help with this? Mine comes and goes randomly which is a very lymie characteristic versus a structural problem.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 3/20/2018 11:29 AM (GMT -6)   
My nerve pain comes and goes - so not 24/7

The past several weeks (6-8 weeks) I have had more good days and parts of days... so I am hoping that this is a trend.

I tried a few things to no avail: CBD oil, Gabapentin, greater celandine and kudzu herbs.

I just recently tried Gabapentin again but I am now weaning off because it doesn’t appear to be helping - as when I am late taking a dose - I don’t feel worse - in fact I feel better sometimes.

I think for me it is treating infections and time to heal that’s helping
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

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1896
   Posted 3/20/2018 3:50 PM (GMT -6)   
Girlie said...
My nerve pain comes and goes - so not 24/7

The past several weeks (6-8 weeks) I have had more good days and parts of days... so I am hoping that this is a trend.

I tried a few things to no avail: CBD oil, Gabapentin, greater celandine and kudzu herbs.

I just recently tried Gabapentin again but I am now weaning off because it doesn’t appear to be helping - as when I am late taking a dose - I don’t feel worse - in fact I feel better sometimes.

I think for me it is treating infections and time to heal that’s helping


But now the conundrum. I was feeling great for a while. My last mycoplasma test showed the score increased (and an active lyme band). My LLMD gave me a mycoplasma protocol concoction. Got to nearly full dose (probably too quickly) and now this.

If these infections will technically always been in my body forever, then when one feels fine, shouldn't treatment stop?

I feel like I just stirred the hornets nest. So now I'm questioning using these herbs.

I hope this is just a 5-7 day herx and isn't an on going chronic symptom.

Next time I feel good and go a while symptom free, I don't care what test show, I'm just going to do maintenance herbs until I have reason to treat more aggressively.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 3/20/2018 4:56 PM (GMT -6)   
If you're feeling great i.e. symptom free - I would just treat for several more weeks...and then stop - I wouldn't retest and start treating again.

But, maybe in your case...it's good that you stirred something up and can now blast it.

Lyme may stay positive even after you're in remission...I would assume the same for mycoplasma.

(if it's an antibody test)
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

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1896
   Posted 3/20/2018 5:36 PM (GMT -6)   
Girlie said...
If you're feeling great i.e. symptom free - I would just treat for several more weeks...and then stop - I wouldn't retest and start treating again.

But, maybe in your case...it's good that you stirred something up and can now blast it.

Lyme may stay positive even after you're in remission...I would assume the same for mycoplasma.

(if it's an antibody test)


Yea this concoction has 8 herbs in it and believe it's a more potent brand then I've historically used.

I think I need to start looking at lyme from the angle of if I find a good "balance" with the microbe(s) in my body then just go with it (the reality of having these microbes). Instead of seeing a test score and then trying to go after it harder.

I've never taken 8 lyme herbs at once before. This may be a bit too much for my system.

This is day two of being off of them. When this herx subsides I'm going to actually following the directions and go super slow.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1896
   Posted 3/21/2018 3:42 PM (GMT -6)   
This issue has 90% subsided (*knock on wood). *whew* "just" a herx and not a permanent structural problem.

Going to start back on the herbs tomorrow, starting from the very beginning dose. Wish me luck.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 3/21/2018 3:53 PM (GMT -6)   
dacarte3 said...
This issue has 90% subsided (*knock on wood). *whew* "just" a herx and not a permanent structural problem.

Going to start back on the herbs tomorrow, starting from the very beginning dose. Wish me luck.




YAY! Good Luck...and keep us posted, dacarte3!
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

Mind body spirit
Regular Member


Date Joined Jun 2018
Total Posts : 49
   Posted 6/10/2018 8:19 PM (GMT -6)   
Peripheral neuropathy- I have been dealing with the burning inside my bones and nerves lately.
It is an

Walking helps me. I force myself to get out although have not been doing the best job lately.

Strictly no sugar, wheat. Up your magnesium, b-12, egosque method of light restorative yoga stretches out the body and cbd relaxes the nerves.
headaches>stroke>bells palsey>trigeminal neuralgia. abx, more ticks. Seizures, fog, bedridden. Stage 4 Lyme w 10 coinfections. 30 days iv rochephin. Buhner+, parasite cleanse, mms, colloidal silver, cacao, mg, b-12, enzymes, Vit c, ozone h2o, fire cider. No sugar, wheat, grain, dairy. Probiotics, kambo, magnets, dry brush, sauna, cold showers, walking, advaita meditation, egosque method. Emf free
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