Burning nerve pain throughout body

I cannot answer this because I am so new.

However, I cannot just click out of this thread when you are hurting so.

Please know I care.

Were you tested and treated for Bart?

I so far have tested negative for Bartonella but have high EBV levels. It is just so crazy because in the the 3.5 years of treating this disease I have never had burning pain throughout my entire body like this. It is so hard to tell if it is from lyme, possible a coinfection, viral, or just damage by antibiotics but it is so hard to keep treating because antibiotics increase the burning ten fold. Feeling so frustrated!!!!

luna - you said you tested negative for bart. That doesn't really mean anything...as testing is so unreliable/inaccurate...that we can't rely on it.

Does that mean in the 3 1/2 years of treatment - you weren't treated for Bartonella?

If so, I'm wondering if that might be why you've developed burning pain - the Bartonella infection is growing?
Bartonella does cause nerve issues.

I do have nerve pain...but I had mine prior to any treatment...and it didn't go away with lyme treatment, so now we are treating the Bart with antiibotics...and I have started to add an herbal protocol in.

I have had neuro Lyme for at least 3 years. Among other neuro symptoms I have burning nerve pain and I can relate! I'm still trying different things and trying to deal with it. I truly think it is the spirochetes waking up and creating havoc. But sometimes I wonder if I can prevent or mitigate it, by avoiding certain foods and stress. It might be a cascade of pain triggered by something. Often there is no trigger I can determine. My pain lasts minutes, hours or days.

My pain is in the abdomen. Some things that I find might help: avoid foods that are problematic. Pain was terrible after I cheated on gluten free diet and ate some pretzels. No more cheating for me! I try to avoid acid foods, and to stop eating after 7 pm seems to help because the pain is worse at night. Small meals. My LLMD has me take Enzalase for digestive help. Antacids don't seem to help.

I also take curcumin to combat inflammation. Magnesium calms symptoms and perhaps gives the spirochetes what they want so they go back to sleep. I have headed off some burning pain that started up by taking this combo as soon as it started up: Enzalase, Aloe Vera tablet, 525 mg magnesium tablet, drinking a full glass of water, then resting and relaxing and get mind off the pain and my problems. I'm not sure which of the combo is working or if all 4 things are needed. I'll keep using this method.

I also suspect the antibiotics are (partly) at fault. It is very interesting someone mentioned Biaxin because I was on that. I recently stopped all antibiotics for a while and pain has been much less. Since stopping the AB, I've been able to tamp down the pain twice when it starts as described above.

I also get burning pain in chest area, but not limbs.

I will also comment that my ILADS LLMD is not good at listening to my complaints of nerve pain. Doesn't seem to take it seriously. When the pain is bad you need a pain med or something major. I did take ibuprofen and that helps but I try not to take that very often since it damages the gut. I believe nerve pain is mostly some kind of inflammation. You need to calm the inflammation.

Interesting that your burning pain is less when off antibiotics. For me I thought that was because my gut was healing, but if your pain is in other parts of the body then the AB would be directly causing the pain. fortunately my other symptoms are bearable right now so I will stay off AB a while as a trial and then go back on. Maybe I could ask LLMD to replace the Biaxin with something else. Are you on Biaxin/clarithromycin Luna123?

I'd like to hear from others who have burning type pains.

Hi Blue flower - welcome to our community!

I have burning nerve pain. i am now treating Bartonella - was on minocycline and Rifampin for about three months, and recently switched to biaxin (stopped mino).

If you stop antibiotics, and you feel better, it could be because they have stopped the 'killing' of the bacteria, so your inflammation is reduced. It's not necessarily a side effect of the medication.

Have you thought about adding in some herbs to treat at the same time - especially since you are taking a break from the antibiotics. You don't want to allow the infection to grow.

Since you're new here - I'd like to point out the thread at the top of the page titled: "New to Lyme?..Start Here!" It's full of good information - symptom lists, info on probiotics, detoxing suggestions and more.

Ive had burning pain on My thighs all the way down to my ankles, also in my nose and eyes, like shooting fire through my eyes and nostrils. I have pain on my feet but not exactly on my heels, it's like nails going through my arches, like the bones are broken, really hard to stand for more than 5 min, I need crutches, could this be Bart?? Can I get rid of Bart with mino and tindamax??

mijos81 - just a quick reply regarding bart treatment

mino and tindamax won't do it.

Rifampin plus doxy or mino or biaxin or zithromax.

fluoroquinolone are another treatment - but they come with a black box warning. (risk of tendon rupture)


Dr. M. R (Seattle) - on his website one of the bart protocols is a macrolide with a tetracycline. I don't think that one is used very often.

Sometimes bactrim is used (can't remember what it's paired with)