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needing encourgement...burning

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Posted 5/26/2016 1:18 PM (GMT 0)
My body burns all over almost all the time is seems I know this Is nerve damage...nothing and everything seems to trigger it I also have altered sensations throughout my body and I can't read it to know what is affecting and what is not...I am so scared..I try to have faith the body can heal ..but well this just seems like it is too much...detoxing..detoxing..detoxing...I feel like I have been detoxing for 2 years..however..I did have a few months in there I was doing PARMED treatment and probably killing things off and didn't know it...


I am miserable and so tired...the nervous system and circulatory system scares me the most...of anything I have...

I just want to feel better and have a life...very tired today..don't sleep much no matter how hard I try..I can't give up though

I have had this for 15 years give or take a few...its pretty advanced...I didn't put pieces together...didn't even know you could get lyme from something other than a tic back then....everytime I would have a joint pain or something it was usually due to some activity or something.....anyway long story...just wish I woud have paid closer attention to my body..I could have treated this a long time ago before this nerve pain the last 2 years.......

Post Edited (carla) : 5/26/2016 9:41:04 AM (GMT-6)

Posted 5/26/2016 2:35 PM (GMT 0)
Hi Carla-

I am sorry you are suffering with this.

Try to stay positive, I know it is easier said than done. But I have learned through my healing journey, that it definitely takes time. When given enough time and the right healing tools, are bodies are amazing at repairing itself.

Try not to focus so much on the killing of pathogens, but becoming healthy and preparing your body to help you out. Eating healthy -no gluten, dairy, etc, cutting down on inflammation, testing for autoimmune diseases, testing for thyroid levels, getting enough sleep, consuming enough probiotics, healing emotionally and spiritually to name a few.

I noticed the biggest gains in my battle when I got to optimal thyroid levels via the right medication combo, and began taking LDN for autoimmune thyroid. When I got to this place, I was definitely more functional on a daily basis and could more easily handle the die off that came from killing the infections.

But every person is different, you will need to find your biggest limiters through testing or maybe trial and error.

I wish you luck!
Posted 5/26/2016 3:16 PM (GMT 0)
I would say go outside and sit in the sun and listen to the birds for even 5 minutes. This always gives me a new perspective.
Posted 5/26/2016 3:38 PM (GMT 0)
thank you...


has anyone had this nerve pain throughout their body...I mean all over their body get any relief...I can't read my body..I have reactions to everthing..it is like my immune system is on high alert

My new doc yesterday said it was mitochondria ...issues


any sleeping is nearly impossible with this heat all through my body..it is really intense...I have to use ice packs to get comfort......

I just haven't heard this from other...this bad anyway...it is scarey.....I

I keep telling myself the body can heal...I tell it I love it and every time I have a negative thought...I replace with positive...but my body is getting tired....Im tired...it would be nice to just be comfortable....for a few days....I could even hadn't joint pain easier than this....but with this all acting up..I don't feel my joint pain
Posted 5/26/2016 4:09 PM (GMT 0)
Last summer I was a mess with pain and especially head pain.

I don't know how or why this worked for me but swimming in an icy lake was relief. Relief all over. Sometimes it lasted the rest of the day (5 or 6 hours) and sometimes I only got a couple of hours of relief. It was so worth it and I went to that COLD lake just for those glimpses of no pain.

Now I wonder what it will be like this summer. Will I tolerate the cold? Did my internal thermostat get changed with the healing? I went in up to my knees a week ago and it was fine, but there was a breeze and I knew if I went all the way in I would be sooooo cold when that breeze hit me when I got out. We had snow this last week at my house and the lake is 2,000 feet higher so I bet it got 4-5 inches. Now summer is coming and it will be time to swim - as soon as the tourists leave after Memorial weekend. I can hardly wait!
Posted 5/26/2016 4:16 PM (GMT 0)
Hi Carla-

The only time I have had similar sensations all over my body was when I was consuming gluten. I would wake up in the middle of the night and feel like my whole body was on fire - burning up from the inside out. I think I have mentioned this to you in a post before...have you eliminated gluten from your diet?
Posted 5/26/2016 4:29 PM (GMT 0)
I haven't had gluten in 2 years..I think with the heat and tingling..I think it is a neurological issues of some sort...I wish it wasn't but I think it much be...I have tingling nose...tingling on forehead...altered sensations throughout my body.... I can't find relief not matter what I do. my lip goes numb at times....mine sometimes feels like it is from the inside out..other times it feel like its on the outside...I really don't know how much more I can take...I am trying to be strong..I thought it would decrease with detoxing....
Posted 5/26/2016 4:52 PM (GMT 0)
Did your new Dr put you on a mitro support? It's recommended and there are a few good options.
Posted 5/26/2016 5:22 PM (GMT 0)
Carla,

Read my info and infections below.....I had full body neuro and over time with treatment this symptom will get better.....had it on every part of my body,some here know exactly what you speak of.

Work with your LLMD,there is hope,try to meditate or anything to get your mind off of it.

Focus on all the things you are going to do to get better.

r
Posted 5/27/2016 6:34 AM (GMT 0)
Oh I hear you on this one. I was 9 threshold /10 pain for month. I had a couple months on and off near that. I will never use that number on scale again. Ever. I don't feel most can even understand the depth of that pain and what that means. I can't compare the entire body burning to anything. Here is the good news..... it does get better. I believe I was having an adrenaline crisis due to massive bartonella kill with crazy thyroid issues. I also backed that up with a massive babesia herx. I have corrected both cortisol & thyroid issues and the pain is so much more manageable the last year. I also do high dose glutathione IVs and it probably helps the most of all the above. It cools the internal inflammation down.
Posted 5/27/2016 8:26 AM (GMT 0)
I had alot of burning issues and it came on the worst when I had anxiety I always noticed. Thankfully its a thing of the past and Doxy actually helped my burning so much(almost instantaneously).

I hope you feel better soon xx's


-Courtney
Posted 5/27/2016 4:36 PM (GMT 0)
My nerve pain always ramps up when I am overwhelmed with something.
The more recent one was doing our income taxes...nothing too difficult...except I kept getting a different total when adding up the medical expenses...
I started to vibrate...and "BAM" - nerve pain all around.....

interesting about the doxy, Courtney.

Dang, I was only on it for about 6 weeks in the very beginning of my treatment. (Was prescribed for two months....but it was July/August...so had to stop for a couple weeks)

I wish I'd done a longer round of it.
Posted 5/28/2016 5:06 AM (GMT 0)
Hey Girlie, well heres the thing...In hindsight, I dont think my burning was actually "nerve pain" but more of an actual symptom of the either lyme or one of the co's. Originally I 'thought' what I had going on was some form of neuropathy or nerve burning pain but it wasnt. When I had brought it up to my llmd he did some sort of vibrating test with a tool on my feet and also said "I dont think what your experiencing is neuropathy" and also thought it was an actual symptom from the infection(s). I had that darn burning for months and it drove me CRAZY but literally within like a week of starting Doxy, it subsided so much and I *rarely get it now if ever.

So, dont beat yourself up for not taking the doxy for longer because it sounds like you may have true nerve pain, where mine was not, so the doxy may or may not have helped ya know. Also, I dont blame you...doxy is SO darned HARD to take in the summer months!! I hate to say...but guess who pulled a tick off them the other day...um yeah sux so bad :(. So, I started some doxy that night I pulled it off just as a safety measure since doxy hits a lil of mostly everything. Im on herbs also. After all that rain I was complaining about the other week...now Im STILL stuck in the house avoiding the sunshine we finally have since im taking doxy now! sheesh.

Oh-have you maybe tried some alpha lipoic acid? Thats what I originally took when I thought what I was experiencing was nerve pain. I remember reading alot of diabetics take it for nerve pain. Or, maybe some neurotonin(gabapentin). I recently took some of that for an issue I was having. Its not something Im taking all the time but it really helped me feel relaxed with no anxiety(I dont have anxiety anywhere like I did in the beginning but I def noticed a super calming effect from it!).



-Courtney
Posted 5/28/2016 5:14 AM (GMT 0)
Speaking of Carla & Girlie, I should have asked: What is your burning like? Is it a migrating burning on diff parts of the body at diff times? Or is it more of a located burning to only a few area's? Mine literally would go in numerous places with one of the weirdest places being on top of my head/scalp(and between my shoulder blades, pelvic region, lower back, arms, feet). I think true nerve pain has tingling with it from what Ive read....but who knows, everybodys different.. but mine was just straight burning and no tingling with it.

I hope neither one of your's is actual nerve damage from the infections but even if it is, the bright side is nerves CAN HEAL with time...

-Courtney
Posted 5/28/2016 5:32 AM (GMT 0)
I was taking ALA for several months...didn't seem to help - so I stopped it.
I would like something to take once in a while - as needed, for nerve pain, but my GP said Gabapentin was something you had to take daily..not as needed.

I don't have many areas that tingle - my left heel does - but no nerve pain there.
My nerve pain is sometimes just an overall burning pain that I can't pinpoint where it is.
Other times it's in a specific area..like my upper back on my left side.
I also sometimes get small areas of burning pain - like my left shin and it's a stabbing, burning pain.

I also have non-burning nerve pain - left arm,hand,finger.

I do have days when I don't get the nerve pain..or its minimal...a couple days a week.
So the way I'm looking at it - if I can be free of the pain on some days, then msybe it's not damage, but toxins/inflammation from die-off.

Even if it's damage to the nerves....I do believe they can heal with time.
Posted 5/28/2016 6:08 AM (GMT 0)
Yeah I think you would have to take it daily too. I been having a whole another array of issues going on recently so I 'tried' the Gaba to see if what I was experiencing was nerve related and it didnt seem to be so I didnt take it anymore...but again, boy did it relax my overall nerves in general! I think some of my issues are actually from candida doing some wild stuff in my body so Im upping my anti-fungal stuff and Ive broke out my Diflucan/Nystatin Powder stashes and sure enough my body has responded in a positive way (shout out to Pirouette for my Nystat P--I lovve that stuff! ;-))

Its hard to say whether yours is from the infections/herxing or true nerve pain. The burning symptom always through me for a loop. You say have non-burning nerve pain in your arm, hand and finger....those areas actually go numb on me(esp my pinky fingers)! The stuff we deal with..smh.

My doc had did a test but I dont know if theres a name for the test he did on me to test for the nerve pain but maybe thats worth asking about to see and go from there to treat it.


-Courtney

Post Edited (orchid_rain) : 5/28/2016 12:15:57 AM (GMT-6)

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