I had posted recently on RSD which I had suspected, but it turns out to be peripheral neuropathy, diagnosed now by a neuro. consult. I will get an EMG (is that right?) in a week or two, but she was fairly certain of this diagnosis.

So, in addition to Lyme, I am now saddled with another diagnosis that has no cure, only a pain management approach.

I am on Neurontin, Oxycontin and Vicodin, with the hope that once the Neurontin kicks in, I can get off the opiates.

The oxycontin isn't holding me, and I am taking Vicodin for breakthrough pain. I am also on Ketek and Tini for Lyme.

Aside from needing to vent, I need some expert opinions from those of you who are dealing with this.

I had started to research as I do with everything, but it depressed me too much to read and I stopped.

If any of you have had neuropathy and it either went away or the pain was livable with meds, I would love to hear from you for hope.

I am at the bottom of the ladder right now.

I don't have neuropathy, so I couldn't give you good suggestions. I'll try doing a search for you though.

Here, they say you can reverse PN with this natural product: http://www.benfotiamine.net/

They say significant reduction in neuropathy symptoms- 90% success rate. There are studies on this too: http://www.realfoodnutrients.com/neu/home.htm?SID=GNeuropathy

I was recently tested for diabetic neuropathy....they found none. It sure was a shock to the system when they used electrical shock to test me; how about you?

I know others w/experience will come on & give you their personal experience. Best wishes to you, and do NOT give up.

It's just another lemon where we need to make more lemonade! I know, your taste buds want something else right now...LOL.

That said, I'd suggest trying to find a really good pain specialist. Even if that doctor won't agree that you have Lyme, you may still be able to get good pain relief. It may also take time of trying many different medicines before you find the right one.

Are you with an experoenced LLMD? I'm sorry, I'm not familiar with your story..

I would be leary of many 'separate diagnosis' from Lyme, when Lyme can mimic so many 'conditions' and there are so many specialists specializing in the various 'conditions' who know nothing about diagnosing infectious causes or contribution.

I imagine your best bet is specialized TBD care, and good pain management in the interim.

Flagyl can also cause periferal neuropathey as either a side effect or herx..

Are you on Flagyl?

As far as alternative pain therapy..I remember reading interesting stuff on pain management with the application of cayenne pepper extract/creams to the skin. If that may interest you to look at in the future..

Pain

Capsaicin cream is well established as a modestly helpful pain-relieving treatment for post-herpetic neuropathy (the pain that lingers after an attack of shingles) peripheral neuropathy (nerve pain that occurs most commonly as a side effect of diabetes, but may occur with HIV as well as other conditions), nerve pain after cancer surgery and arthritis.

Capsaicin instilled into the nose may be helpful for cluster headache. (The fact that this has even been considered a viable treatment option shows how painful cluster headaches can be!)

Actual cayenne rather than capsaicin has been tested for pain as well. A 3-week, double-blind trial of 154 individuals with back pain found that cayenne applied topically as a plaster improved pain to a greater extent than placebo.

But..right now, sounds like you need something effective asap..and be sure and get at treating the TBD's that are causing all this.

Mo

Hospital stays for pain- that is INTENSE!

The pain I had is a fading memory, but I remember it was daily, nightly unrelenting, crying a lot and taking lots of meds and drinking lots of booze to dull my pain. IT was AWFUL!

I was diagnosed with radicular neuropathy...that is pain that starts at the nerve roots. And thoracic outlet syndrome and scapular dyskinesia, and rotator cuff injury and and and. And guess what?

It was all coming from LYME and coinfections.

All that pain is now G-O-N-E. gone. And there is no reason for it to just GO away. Except that the lyme is now in other parts of my body and not bothering those parts.

You can recover from this. Hang in there. Keep taking your ABX. Are you detoxing and relaxing with epsom salts baths and peroxide? Really helps take the toxic load of all those meds down.

I cant imagine how much pain you are in right now, but I hope I can offer you hope that it will not last your lifetime. I SWEAR I would not have believed it myself even two months ago.

The neuropathy has since gotten worse, my tongue is also tingly. I have another EMG next week.

There is an alternative it's IVIG which is antibodies. You can Google it to get info, my lyme brain is spacing out, can't explain what it does. HOwever the doc doesn't think insurance will cover. Very expensive $4,000 mo?

I have talked with others who have PN due to Lyme, and this too eventually disappeared with the Lyme symptoms.

Sorry you're in so much pain. Keep the faith.

"It's a long way out - but we're gonna make it out"

Before the diagnosis I allowed the docs to do many tests including nerve conduction testing-it made me worse and they are very painful. The problem is once they make the diagnosis of PN, how do they treat it. With our without the testing they treat it the same.
So consider the testing. Ask your doc what he will do differently once it is diagnosed. When our skin burns, we can diagnose that ourselves.
PN is difficult to treat. There has not been a pain med that has touched it. I was even on 3600mg of Nuerotin- no help.

I beleive the Nuerotoxins, a consequence of Lyme can cause the skin to burn.

I take MANY warm baths with epson salts and hydrogen peroxide. Alpha Lipoic Aicid may help also. Vit b12 def can cause burning also.

Just thought you may want to know that there are lots of us with Lyme that PN is our primary problem.
If I can help please feel free to email me.

The pain feels like my feet and leg muscles are being ripped out, it's not necessarily burning except for some minor warmth in my feet.

As for the baths recommended, it sounds like epsom salt and hydrogen peroxide might work. I've used epsom salt and baking soda, always feel worse. What are the amts. of each please? And we are talking about warm, not hot, water?

I was blessed with a Lyme friendly neurologist who has never questioned my diagnosis and treats me like a normal person. While in the hospital, I had a pain management consult with a doctor who knows her, and he said she should be able to handle my pain management due to how skilled she is. He said he would take my case if she needs to refer to him, so I am covered there. I also have a good LLMD.

The neurologist was in no hurry to do the EMG. I had heard that it hurts, is this true? She suggested a lower body EMG. I also had the thought that I didn't need the test if it wouldn't change the outcome of the treatment. Betty, was it the EMG you had that shocked your body?

Sak, those are some interesting websites, I will check them out further, thanks.

I will resume my coffee enemas today to detox, had stopped them a while ago. I also plan to call the acupuncturist I just saw once and ask if she has handled neuropathy.

Eventually it improved, but is by no means gone...(perhaps some day..sigh..)

But, I did go to a Pain Management Clinic for ideas with meds.- it didn't help a lot..but I did try some things. My pain is definitly burning...

I did get that test- it was called a 'nerve conduction study'- it was painful, but considering how much pain I was already in...it was bearable & don't be scared if you decide to do it.

There were two parts: the part where they 'shock you' (this was not so bad) & the part where they stick something in you & turn it to test your nerve some how? That was pretty unpleasent..but I wasn't screaming in agony or anything..

However, the outcome? Oh, everything "seems" normal (hahahahaha)- but the pain guy wanted to run his tests just to make sure...so there you go.

Thinking of you.

I had several nerve conduction tests and I still ask the question WHY?

If it shows PN then what?
If it does not show PN, then what.
The docs will treat it with pain meds, that probaly will not be affective.

Do research on Nuerotoxins.

Based on the pain and the possibility of triggering the critters, why have it done?

Also, be aware of any prednisone. Not good for us.

Dosage for bath-
Warm, not hot.
2 C ES
1 bottle of 16oz HP.

ES first,add HP after 10 min.
soak and enjoy.

I understand your pain, again I have burned for 3 yrs. I cannot wear shoes, sheets hurt.

Warm baths, hot tubs are the best.
Take Care

I had several nerve conduction tests and I still ask the question WHY?

If it shows PN then what?
If it does not show PN, then what.
The docs will treat it with pain meds, that probaly will not be affective.

Do research on Nuerotoxins.

Based on the pain and the possibility of triggering the critters, why have it done?

Also, be aware of any prednisone. Not good for us.

Dosage for bath-
Warm, not hot.
2 C ES
1 bottle of 16oz HP.

ES first,add HP after 10 min.
soak and enjoy.

I understand your pain, again I have burned for 3 yrs. I cannot wear shoes, sheets hurt.

Warm baths, hot tubs are the best.
Take Care

quote:

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Originally posted by lhm312:
I had heard that it hurts, is this true? She suggested a lower body EMG. I also had the thought that I didn't need the test if it wouldn't change the outcome of the treatment.

I also plan to call the acupuncturist I just saw once and ask if she has handled neuropathy.

---

I reached the point of unbearable nerve pain about 2 years ago. (It had been intermittant and not as severe, in the past. It's left sided, leg and arm.)

I got a referal to a nuerologist and was on neurontin for a while. It helped for a while. When it started to flare again I made a fuss and they did the nerve conduction/EMG thing.

My experience was exactly opposite of fiddler's the needle part, which they told me would hurt, didn't. The part that wasn't supposed to, did (where they send the current back and forth). Go figure.

They did my left side. The results showed basically nothing.

Oh, right, mild carpal tunnel in my left wrist. Which may explain the flinging but tells me nothing about the left leg pain.

I hope you get some relief soon.

edited because I can't tell right from left.

I would avoid it unless you want specifics about where the pain is coming from. This can sometimes be helpful b/c you can do nerve blocks. But I dont know about those too much.

I have severe nerve pain -- is that the same as PN?

I would be cautious about nerve block injections, at least start slowly. I had 3 different sets of several nerve blocks, and each set made my pain increase. It did not work. Mine is in my ribs and chest.

I am on slow release morphine sulfate now, w. Percocet for breakthrough pain. It is the best pain relief I have found. I tried neurontin and topomax. Pain Clinic came up with it.

I am sorry you are dealing with this. Ask about MSContin, and be cautious about nerve blocks.

quote:

---

Originally posted by Mo:

Flagyl can also cause periferal neuropathey as either a side effect or herx..

Are you on Flagyl?

---

I would go off the Tini to see if it helps. Tini is a cousin of flagyl.

Hope the pain eases SOON!!!

I didn't know so many of us suffer from PN, and it certainly makes me feel better to know I am not alone in my pain.

I didn't have any breakthrough pain today, and consider that a miracle. I took the Oxycontin this morning and it held me all day.

I am now taking 300 mg Neurontin at night only. It knocks me right out, better than any sleeping pill. Once I get used to it, I hope to be able to eliminate the pain pills, but it may take some time since I am real sensitive to meds.

I will pray for healing for us all. God bless.

Linda

It is an antidepressant that is also approved to treat diabetic peripheral neuropathy. It has been a wonderful drug for me! It has taken my daily pain level from 7/8 to a 2/3 or none at all. I think that it has bought me time to let the abx do their work - I weaned off of it after 6 months and the intense neuropathy sensation has not returned.

AT the time I did not know I had late stage Lyme- But this pain **IS** a symptom of neuro Lyme (and even though I, like you, received a diag. having nothing to do with Lyme.. it really was Lyme.

It lasted 3 months for me. I was debilitated, miseed almost 3 months of work. Narcotics didn't touch it for me.. but 2.8 grams of ibuprofen in my blood every day brought the pain level down where I stopped considering just packin it in totally. (Other prescription NSAIDS didn't touch it) Interestingly, I had an extremely high white blood count during this time - like 18K...( and it was suggested that I had a 'viral' infection, but they never looked for one - I was not on any abx at this time.

DO you have an elevated WBC ?

I had that pain return as a flash-back symptom in 2002 while on Lyme therapy - and I stopped by abx until it passed.. then resumed.
Because this is a CNS problem-
some ant-depressants or some anti anxeity drugs work to also calm inflammation - one of those classes of drugs may work better than narcotics.

It's worth a try. That pain is excrutiating.

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