posted
As all of you know, I talk endlessly about my neuropathy in my neck and how it's spread to my face and now it's on my belly. It never stops and I've been living with this since Feb/March and I'm at the end of my rope with it.
I'm tired of not wanting to do ANYTHING because I'm in so much pain. I'm tired of my 2 year old seeing me cry and I'm tired of not being able to play with my kids like I used to and how I want to. I used to be so active, energetic, happy, and always being silly & teasing everyone.
So neuro Lymies, not that I'm all neuro (I have never ending sore throats, ear pain, horrible bone pain etc) but the debilitating symptom of mine is the burning stabbing pains in my neck/tight, pulling muscles, and "crispy" or "burned" or "tight" feelings on the topical layer of my skin.
I did 2 rounds of Doxy, 1 of Amoxy, and 30 days of I.V. Rocephin along with Flagyl.
I did a little bit of Levaquin but had to quit as my tendons were absolutely getting ruined and they pulled me off of it. Then I tried Rifampin without success as well, it made me incredibly sick to the point where I couldn't take care of myself or chase after a 2 year old all day.
My neuropathic pain is so bad, and it hasn't let up at all with the treatment that I have had. I am without an llmd at this point and my gut is so rotten from all of the abx - I am just sick to my stomach THINKING about taking any more abx right now. I can't even stomach the thought.
My question is: Is there ANY treatment that helped you get rid of your neuropathy permanently? Whether it be a certain abx, herbs, or a regimen of doing Botox (I know that's NOT permanent), anything.
I am so sick of not being able to think straight because of this pain. I feel like my life will NEVER even resemble that of a half way normal person's and I question my ability to accept living a life like this, in so much pain. My brain is blown with pain. I feel like I'm starting to lose my sense of resolve in this.
Is there something that I'm missing here? Do people with neuropathy ever get better? Neuro Lymies that have been cured? Is this damage that is just "done" to my body or a dang active infection?
Any words of advice with what helped you? Encouragement, anything? I'M SO SICK OF THIS LIFE. I want my old one back.
-------------------- ~*~Lyme POW~*~
I will escape. Posts: 100 | From n/a | Registered: Oct 2008
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Angelica
Unregistered
posted
I wish I had some better words of advice for you. I wonder if acupuncture might help?
I just want to say I hope you get your answers and you start feeling better and get to a MD who can help you. I am sorry you are going through this and wish there was some way I could help you more.
Hang in there and hopefully you will get rid of this pain in the neck - Lyme and coinfections. Your current symptoms sound like bart to me.
I will hold good thoughts for you getting better soon.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I wish I knew the answer. I'm in the same boat. I can't handle the muscle tension anymore.
Most people I talk to that know of others with Lyme say they had sharp pains deep in joints. This muscle tension just doesn't fit the story. I wonder if I'm barking up the wrong tree?
Have you tried Cymbalta? My neuro said it's wonderful for neuroipathic pain. I'm strongly considering it. While some here have made negative comements, I don't find the route of endless antibiotics good either. That seems to be well accepted though.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I've tried it seems like all of the muscle relaxers and they don't work. I've never tried Skelaxin (or whatever it's called). Have you tried different ones and found this one worked better or was this the first one you tried?
The Klonopin type drugs help all of my pain. I've found that when I started with this illness and I was rxd Klonopin (the ole' it's anxiety dx) it worked great and stopped my tight muscles and burning skin SO WELL. Then as time went on, 1mg didn't work good. I got up to 2, 3x daily since Feb just TRYING to stay out of pain.
It sad that I have built up a tolerance. I've taken long breaks from it, trying to renew it's effectiveness.
Since I've gotten sick, I've wondered what pot would do to help. But I would never, ever, ever do that again, I've got kids and too much to lose it I ever got caught! Plus, I'd feel silly trying to even find out where to get it! I've moved since those good ole days. :)If it were just me, I'd probably try it as I've read that it's good for neuropathic pain. It's amazing that something that comes out of the ground and is so mellow can be outlawed, but they can give me a pill that kind of does the same thing.
I've tried Lyrica. It didn't help. But the thing I recently remembered about it was that I got up to full dose and I started twitching. I equated the horrible twitching with the Lyrica (as I looked up that it was one of the side effects), I immediately stopped (and it wasn't helping at all) but the twitching kept on. It was an actual Lyme symptom but the timing of the two made me think it was the Lyrica.
I think I have a refill on it from forever ago. I wonder if it's still valid. I might give it another try. It was so dang expensive with supposedly great insurance. No generics suck.
-------------------- ~*~Lyme POW~*~
I will escape. Posts: 100 | From n/a | Registered: Oct 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
have you tried Baclofen? It is used for spascity (rigidty of muscles) in MS?
Not a typical muscle relaxer.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I use Baclofen..doesn't touch the tight muscles produced by Lyme. I never took more than 30 mg a day though. Muscle relaxers aren't too effective I believe because I believe the issue is coming from the brain.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
That's what worked for me. I hope you get some relief soon!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
I feel your pain. I am diagnosed with Chronic Demeylinating Polyneuropathy, for which IVIG treatment has done nothing. It is an immune-mediated response to the Lyme infection, so the antibiotics are not much help either.
It's a horrible thing.
Have you had an EMG, NCS, Evoked Potentials, Small/Large Nerve Fiber biopsy, etc? Did they show any Demeylination, or just Neuropathy? Did it show sensory involvement? Small or large fiber? Did the nerve biopsy show anything abnormal? ...I might be able to recommend some meds that have helped me, if I know a few of the basic features of your Neuropathy.
Feel better!
Posts: 43 | From NY | Registered: Oct 2008
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bettyg
Unregistered
posted
mom, so sorry you have this and a 2-yr. old who needs lots of loving!
i've had this for 2-3 decades; not fun; i have frozen ice packs on me all the time while up! my neck/shoulders and lower back!
i've been on baclofen, 3 daily, for 10-11 years now.
have you had xrays taken to show any damage done to neck/spine area? mine show the problem areas in them.
have you had any physical therapy your INSURANCE CO. WILL PAY FOR? best wishes! we share your pain daily.
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Effective Treatment for Neuropathic (Nerve) Pain
posted
Realize that what may work for one person may not work for another. But here is a list of what Ive been taking. Ive been on some sort of abx for the past 5 mos, but I have made progress, especially with neuro problems, in the last two months.
I started on doxy 3x a day for 2-28 periods (56 days) first...then went onto the following protocol:
To say that Ive been taking some sort of med/supplement on a regular basis is an understatement. The only way I could keep track of it all was by using spreadsheets, checklists, and automatic daily reminders. Im starting to feel like Pavlovs dog... get a reminder, take a pill, another reminder, more pills...etc.
Ive already had two of the abx end in the past few weeks with the last one ending next week. Ill find out from my LLMD tomorrow if I stay off abx now, or if he refills the prescription, or if I go onto something else.
Good luck!!
Posts: 514 | From . | Registered: Apr 2008
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posted
I have heard good things about Cymbalta from other Lymies, I am getting to try it, neurontin isn't enough, the nerve pain is a 'Whole another animal - per my doctor"
Posts: 315 | From USA | Registered: May 2005
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posted
I have heard good things about Cymbalta from other Lymies, I am getting to try it, neurontin isn't enough, the nerve pain is a 'Whole another animal - per my doctor"
Posts: 315 | From USA | Registered: May 2005
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posted
I have heard good things about Cymbalta from other Lymies, I am getting to try it, neurontin isn't enough, the nerve pain is a 'Whole another animal - per my doctor"
Posts: 315 | From USA | Registered: May 2005
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posted
I had neuro lyme, was on pairs of antibiotics for 6 years. Time and abx did the trick. I recovered 95% of my neuro function and the neuropathy went away. Fast forward a few years....Neuropathy of unknown origin and the docs I've seen got tired of me and stopped looking. I have an appointment with a new neuro soon. For now, it is 2400mg neurontin....I need more, getting the burning prickles in the evenings. Oh well. I will keep up the fight. So, keep up the antibiotics. it is the only true weapon against lyme. I felt that it was either them or a slow painful decline. Life it is!
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Acupuncture helped my peripheral neuropathy a lot. Then I added direct moxabustion using a smokeless moxa pole (a pole made of the herb mugwort that you burn over acupuncture points) -- an acupuncturist can show you how to do this on yourself at home -- over acupuncture points specific to pain in the extremities (i.e. GB-34).
That combination helped a great deal, but recently I added Garlicin (garlic supplement) and it really helped. Dr. Zhang uses garlic to treat neuro Lyme (though you have to get a brand high in allicin).
Posts: 929 | From Massachusetts | Registered: Oct 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Lyrica began the change of retrieving life.
I tried Neurontin: Useless.
I'd speak with your doctor about trying the Lyrica again, if that doesn't help significantly, try the Neurontin or vice versa.
I've noted from this board that often it is reported that one helped while the other did virtually nothing.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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