Intense nerve pains more often. Scared

I've had nerve issues since 2016 but just today I had 2 intense stabbing/burning pains. It was once every 2 weeks for 4 weeks.
I am looking into getting mold testing and will be seeing a mitochondrial doc as one of those snps are blocked. Also will get a small fiber Neuropathy punch test.
I've tried cbd, boswellia, curcumin, essential oils on my feet, mag on my feet.
I have yet to try protandim, cannabis card, and ldn.

This is the symptom, among many that I have, that has caused me to apply for disability and caused definite suicidal thoughts. Having it get worse makes me feel really hopeless, helpless and scared. I hate this pain.

Can pain like this cycle? As in could it calm down? I dunno if this is mold, metals, mitochondria, lyme, Bart, babs, mycoplasma....

Any advice?

Post Edited (6Hypnone) : 11/12/2018 5:12:51 PM (GMT-7)

So sorry you’re dealing with this. As sebreg said LDN helps a lot of people including myself. I’m on 4.5mg. I’m also on 50mg of Amitriptily for nerve pain. Heat packs or ice packs can help a bit as well. Make sure your diet is super clean. Best of luck,

Are you sure the P5P is mcg and not mg? It gave me peripheral neuropathy at 33 mg twice a day, which quickly resolved when I stopped taking it. The methylated B vitamins take guesswork to dose because too much or too little can cause the same symptoms, it can also contribute to a herx. At the moment I'm taking about 7 mg of P5P as well as cofactors TMG, methylfolate, B12, and B2 in a B complex called Homocystex Plus (Methyl Protect is a similar blend); I have to empty the capsules onto a milligram scale to keep my dosage consistent.

When I take too many B vitamins I get a persistent burning in my fingers, toes, hands or feet like I picked up something hot. The herx is more widespread and includes burning, but it migrates, this is probably bart. http://mthfr.net has all the info you need to get the doses right.

6Hypnone I went through the same thought processes on why my nerves were bad and in the end it's none of that stuff its the darn bugs causing your brain to misfire signals to your nervous system. Might be the same for you. Dr. J in DC says pretty much every person with Lyme and co's has some type of nerve issue.

Try gabapentin again and add Trileptal if you need to up the effectiveness. It works very well for calming down the neurotransmitters by giving you more GABA that your body doesn't produce.

I would've probably off'd myself if not for this combo nerve med. You should really look into going on it again. You can titrate up. FYI I'm currently on a daily regimen of 1800mg gabapentin (3x/day) and 1 pill of Trileptal 2x/day. Has really helped me function. Doesn't get rid of all the nerve pain but def helps.

To be clear i take 600mg gabapentin 3x/day for a total of 1800mg.

I have burning pain a lot and sometimes sharp, stabbing pains or electrical pains. I've never taken gabapentin. I've gotten some relief from quercetin (500 - 1000 mg).

This pain happens all the time when I'm herxing, which is most of the time.

I have Lyme, mold, bart, and probably babs. I had HORRIBLE burning for 6 months straight after leaving my moldy environment and trying to detox mold (all before attempting Lyme/co treatment). I also get intense burning from liposomal glutathione at times. For those two reasons, I believe mine is from toxins coming out of my tissues.

Rikky1 said...

WalkingbyFaith said...
I believe mine is from toxins coming out of my tissues.

have you tried a FIR sauna and if so how did you feel? A FIR sauna should settle the question whether toxins are really your issue as it'll move them quickly.

Unfortunately I have not, Rikky. My first doc had one but about a month later had to relocate her office due to water damage in the building. She had to leave the sauna behind.

I searched the internet and asked my chiro if he knew who had one, but no real luck. The YMCA has some kind of sauna, but the one closest had evidence of water damage in the building and strong smells from either mold or gym equipment.

I was going to buy one when I found a clean home to move to permanently, but finding that clean home that I don't react to and isn't moldy is going to require some serious divine intervention it seems.

I'm Scared to go on again due to side effects, and having to up the dose bc of tolerance. Plus going off and having the pain come back.

Seems many lymies don't suffer from nerve pain that I've seen on the groups at FB.

I'm surprised TMG was never brought up to me by any doc.

I think. I was on quercetin in a supp that was mixed with other things (boswelia, curcumin, and one other) and I didn't feel any different.

I have no idea if I herx at all. I can't tell what's causing the pain.

I take 100 mg of minocycline for neuropathy, it's improved some of my numbness, while causing other neuro symptoms to flare because of the infections.

Minocycline improves peripheral and autonomic neuropathy in type 2 diabetes

I'm just about to get my MM card as well. So I haven't tried full spectrum myself, but based on what other patients say it seems to have better potential to help with some of these issues.

There's a facebook group that might offer ideas on best brands to try, although I'm not sure if they talk about full spectrum: https://www.facebook.com/groups/cbdoileducation/

I think it might require a bit of experimenting to see if you can find a particular strain of CBD that works best for your issue. I'm sure there must be some strains that are more geared towards neuropathic issues...

Good idea to start the LDN at that lower dosage. Then you can gauge your response, normally it takes a few weeks to start feeling effects. I hope it helps!

Ahh, maybe the mino wasn't effective for you then...

I too have neuropathy from lyme and bartonella. Am currently dealing with intense nerve/neuropathy pain in my forearm, buttock and various places here and there. I am already on gralise (a time release gabapentin) and baclofen for trigeminal neuralgia, along with lots of other meds and herbals.

I have found that these symptoms in particular got so much worse after I stopped taking a prescription vitamin B combination called Podiapan. It is specifically for neuropathy pain. I cannot take vitamin B complex because it gives me the jitters terribly. As my insurance company stopped covering it, I stopped getting it but have just now renewed it and will pay myself ($44 bottle) to see if it can help.

I wonder if something like that would help you. I will try to remember to let you know if it helps me. Sometimes it is just finding the one thing you body is missing you know?

I talked to the med place that referred me to the doc that gave me my dx. And he said terpenes are the most important. For me, to most likely get indica w/certain terpenes for my symptoms. And that the dispensary would help w/that part.
Its so expensive. 175 for the dx, 99 to see a doc, which I have to see 3x/year for updates at 75 each, then the app fee (150 i think) and then buying the actual product. I so love getting continually buttraped just to stay alive. 'Murcia.

springsjean, I will look those up. I've had to ask my insurance (medicaid) multiple times for formulary exceptions. So far I've gotten all the ones I've asked for.