Hello new to this board. I have many DX but the mimosa recent is lyme and bartonella. I have horrible full body neuropathy that my LLMD says is not related to the disease after 6 was IV antobiotics followed by 3mos herbals. The infectious disease doc says don't rule it out. But said not typical of bartonella burning which is hands feet face usually. Both say I might have been infected up to 8 yrs ago when I was first DX with autoimmune mctd. It's so bad I can barely get out of bed as activity makes it so much worse. Neurologist can't find specific cause so thinks crps. I was on 5 weeks IV zithro with rocefin ending with 1 week iv zithro and rifampin. Diahrea constant issue so had to stop. Since herbals not causing improvement yet infectious doc put me on zithro 3x/ week to keep Bart at bay in his words. Anyone else have full body neuropathy this bad or close to it? Would appreciate any helpful suggestions. Oral pain Meds don't work lyrics anticonvulsants or opiates so nearing trial of a pain pump drugs. Thanks

Sorry to hear about all the trouble you are having with your pain, Allwrightann. I have late stage disseminated lyme, or neuroborelliosis, as it's also called. Sounds like you have it too. I went 36 years without being diagnosed/treated, and during that time developed an autoimmune disorder as well (Sjogren's).

Untreated lyme causes a great deal of damage to our bodies-sometimes this damage is permanent, sometimes it resolves with successful treatment. I've been treated for the past 2 1/2 years with various oral antibiotics, and I'm no where near cured. I think it's most likely that you are not cured either, despite the course of IV antibiotics you received. Borrellia are extremely hard to kill. I took Malarone for babesia, and it worked extremely well for me, but the lyme persists.

I have periperhal neuropathy too, but not to the extent you are experiencing. It is hard to control-finding meds to deal with the pain isn't easy. Most drs seem to recommend Cymbalta (an antidepressant). I was put on it, and it did work fabulously, but I had to discontinue it due to side effects. I was taking Topamax (an anticonvulsant) for it as well, and continued on the topamax after stopping the Cymbalta because it also worked to relieve the pain and pressure in my feet. I also discontinued it, not due to side effects (there are a few, but not enough to stop taking it) but because I replaced it with something else which also took the pain away just as well, with no side effects (dextromethorphan OTC).

I tried Lyrica as well and it didn't work for me either. If you haven't tried Topamax you might want to give it a chance. As for the dextromethorphan, it works well for me because it relieves the neuropathy as well as the various pains I experience due to Ankylosing (also an autoimmune disorder). I take 120 mgs daily and don't have any side effects from it. It's been a game changer for me.

I hope you find some relief. Living with pain is hard, especially when you're not sure about the cause. Good luck on your lyme treatment.

I think I tried cymbalta but as an antidepressant so for pain levels may be different. I take savella for fibromyalgia but again that was probably lyme and Bart. If cymbalta is an ssri I have to watch for serotonin toxicity as savella is an snri. I'll see if I can give topamax a whirl. Nortripteline has also been mentioned to me. Did I say I did 10 days of IV ketamine? Didn't help either. You've got quite a list of dx I hope things are going well for you.

Oh and I forgot. I did try dextromethorophan and high dose Lamictal. I looked at Marshall Protocol. I'd love to hear how it goes

I have heard that Savella doesn't work very well (this from my rheumatologist) so I never tried it. I'm glad it works for you. The Cymbalta provided great pain relief, but it wasn't worth the side effects (weight gain, spaciness, flat affect)-I felt like I wasn't really living, I was so out of it. It would definitely be an either/or situation for you--Savella or Cymbalta.

I asked for the Topamax, because it was weight neutral and I figured it couldn't hurt. I believe they also say it is a mood stabilizer. I'm not sure I noticed that effect, but it did work on the PN. Oh, and I used it as a sleep aid for the insomnia-it worked ok for that purpose. The side effects were dry hair (some people report it makes their hair fall out-not me) and a tingling sensation in my fingertips.

Yeah, I have quite a few health problems-that's what happens when you go 36 years without being properly diagnosed or treated for lyme. I really believe all of my problems stem from the undiagnosed lyme. If I could eradicate the lyme, I believe I would lose most of my pain and a few diagnoses.

As for the Marshall Protocol, I totally agree with Dr. Marshall's theory of inflammation being caused by bacterial infections of all kinds. Right now my Sjogrens and Lyme treatments are totally stalled because of the raging inflammation that refuses to die down inside of me. Neither treatment (the antibiotics for the lyme and the Plaquenil for the Sjogrens) is adequately addressing the inflammation, and without addressing the inflammation, nothing will work...at least it hasn't for the past 3 years. I've been going nowhere but down hill. So when I read about the Benicar eradicating inflammation by actually inhibiting NF-Kb, thereby eracaditing TNF-a, I knew that Dr. Marshall had hit on an actual direction to treat BOTH my Sjogren's & the Lyme (through the addition of minocycline then clindamycin). Luckily, my LLMD agreed and I'm supposed to start it once my insurance kicks in (the necessary Benicar is $700/month...ouch)..hopefully next week. I will definitely keep you posted.

I meant to ask you how many mgs of dextro you worked up to? I've been taking it for 2 mths now and upping the dose slowly, since there are no guidelines to follow. I tried 90 mgs for a while & it didn't work for me-however, when I hit the 120 mg mark and above (150 mg at most) the relief kicked in-not just PN relief, but relief from the constant ache in my SI joint, as well as constant tendon pain. But it doesn't touch the fibro pain AT all. Not a bit. That's where the Low Dose Naltrexone saved the day. It melted the leg pain away and it hasn't returned since I've been taking it.

The best I can figure, the LDN works on substance P pain. There aren't a lot of meds that do. Dextro works on NMDA pain. I know that may not make a lot of sense, but I've been researching the anatomy of pain and inflammation lately, learning the mechanisms which drive pain so I can find some solution to relieve it. That's how I discovered Dextro-it is an NMDA antagonist. So is Ketamine, to which it is related. Since neither Dextro nor Ketamine helped your pain, perhaps the mechanism behind yours is Substance P, rather than NMDA. Just guessing though. If so, maybe you need to look for a Substance P antagonist?

I do take LDN 4.5 mg. But I also tried 15 mg. Thanks for the explanation on the causes of pain. Maybe I should try Marshall protocol too. I forget. Do you have scs unit?

I think they said amounts of LDN over 10 mg are counterproductive. The original researcher who discovered this new use for LDN used 4.5 mgs in his study to produce the beneficial effect, so that's what he recommends and most people follow it. Sorry it isn't working for you. How long have you been taking it?

Have you tried tramadol to blunt the pain? It also works on substance p pain. The hydrocodone did nothing for it, but the tramadol dissolved it eventually-not as quickly as the LDN, and it didn't take the pain away for long, but it did mask the pain, which nothing else did.

No I don't have a scs unit...hopefully it will never come to that. The Marshall protocol has some restrictions and rules -like wearing NOIR sunglasses whenever you are out in the sun, which is no biggie..already got mine and they are cute! You might consider it, but it is a long haul type of proposition-I plan on doing it for at least 2-3 years. If it works sooner, that will be just fine with me. Personally, I believe it's the only viable method of totally eradicating lyme for people who are sick as we are. All our other disease(s) stem from the lyme-until our inflammation is effectively addressed, no antibiotic will be able to eradicate it. And until the lyme's eradicated, the inflammation continues....a classic Catch-22.

I found this today during my research-

http://www.ncbi.nlm.nih.gov/pubmed/23546884

It showed that LDN has been helpful with CRPS, but unfortunately, the abstract doesn't indicate the dosage used.

I also found this article, indicating memantine, an NMDA antagonist, (name brand Namenda) reduced the pain involved in CRPS:

http://www.ncbi.nlm.nih.gov/pubmed/17314583

Have you tried memantine?

Hi thanks for the help. I already take LDN. It's usually 4.5mg. I also tried namenda. No good either. Did 10 day outpatient ketamine also I think nmda. No good. Sigh. Oh well