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» LymeNet Flash » Questions and Discussion » Medical Questions » nerve pain - help please!

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Author Topic: nerve pain - help please!
Lioness
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Hi,

Does anyone know of a natural way to treat the nerve pain?

The dr wants to put me on Lyrica. I did not do well with Neurontin or amatryptaline. I have heard mixed things about the Lyrica.

I take Vicodin and it helps with some of the pain, but not enough. My new LLMD wants me to stop the Vicodin all together [Frown]

If there is something natural that does help with the nerves, I would really appreciate hearing about it.

Or anything else that will help!

Thanks

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AP
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I don't have a natural way to treat it, but I take Lyrica.

When I began taking it, it made me so tired, I could hardly function. It also made me twitch. I went up to the 200mg a day that was prescribed, but it was just too much. I now take 100mg at bedtime, and I seem to not be having problems.

Sorry I didn't have a homeopathic way. Just thought I'd give you a little info about Lyrica.

--------------------
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Jill E.
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I haven't found anything yet, either. I've had burning nerve pain for about four years throughout my body (started a few months after the bite), now have added tingling.

But the worst is now I have electric shocks that actually make my legs jump. I'm about out of my mind with this.

I couldn't function on even a tiny dose of Neurontin and gave up. I may try Lyrica at some point - I need to discuss this with my doctors.

I've tried all kinds of topical creams and gels and that has not helped.

When I first got symptomatic, before I knew it was Lyme, I tried supplements for neuropathy such as alpha-lipoic acid and n-acetyl-cysteine, but stopped when a nutritionist told me at high doses it can move heavy metals, particularly mercury, out of the tissues and into the brain and central nervous system.

If I find anything, I will post because this is such an overwhelming issue for me right now.

I am thinking that my nerve issues may be more related to Bartonella than Lyme because Lyme antibiotics have only lessened it slightly.

I had to stop Levaquin early for Bart due to tendonitis. I just started Rifampin but am dizzy on even the tiniest of doses.

Good luck!

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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ldfighter
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quote:
Originally posted by Jill E.:
When I first got symptomatic, before I knew it was Lyme, I tried supplements for neuropathy such as alpha-lipoic acid and n-acetyl-cysteine, but stopped when a nutritionist told me at high doses it can move heavy metals, particularly mercury, out of the tissues and into the brain and central nervous system.

A nutritionist told me the same thing about NAC (n-acetyl-cysteine) dragging mercury into the brain, but she also said that it was ok IF taken along with whey protein or another source of branched chain amino acids (which I never tried). Anyone know if this is true?
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Aniek
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Lioness,

Unfortunately, nerve pain is one of the hardest pains to control.

Did your LLMD explain why no vicodin? I've heard LLMD's discuss vicodin and was absolutely floored by how they talked about it. It was complete ignorance about pain medication.

It would be like listening to must ducks say that they would never put anybody on long-term abx for Lyme. They were much more concerned about pretty minor side effects from narcotics than they were about the long-term damage caused by pain.

Pain does cause damage. Studies have found chronic pain changes the nerves and it gets worse if not treated properly. It also weakens the immune system.

--------------------
"When there is pain, there are no words." - Toni Morrison

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Lioness
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[QUOTE]Originally posted by Aniek:

Did your LLMD explain why no vicodin? I've heard LLMD's discuss vicodin and was absolutely floored by how they talked about it. It was complete ignorance about pain medication.
/QUOTE]

Something about how my body wouldn't be able to fight the pain on it's own. (i think that is what they said)

But, if my body was fighting the pain, I wouldn't need the meds. I know having FM alone makes me have a low pain threshold.

I have taken a lot of other meds for pain. Too many to even remember them all.

The vicodin is the only one that has done anything with out the side effects.

Obviously, I don't want to take meds forever. And being cured is what I want more than anything.

But if it comes down to me snapping my neck, cutting off my legs or ending my life because the physical pain really gets that bad, then I will take the pill!

The thought was to get me on the Lyrica and off the Vicodin.

But don't they take care of different types of pain?

This all gets overwhelming some times... and trying to figure out what is best, and the time and money spent trying to get there really makes me crazy!

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Nebula2005
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Lyrica is a very similar drug to Neurontin. I would be surprised if a person could take one and not the other.

I tried Neurontin and it didn't help--made me feel WEIRD like being drunk and strung out on caffeine at the same time.

Vicodin is the only thing that even takes the edge off of my nerve pain. Because it's an addictive opioid, and abused by some people, doctors think it's "bad."

I don't know about you, but it doesn't take me more than half to a whole pill to ease the pain.

Chronic pain is so difficult. No one can really feel what your pain is like.

I know that sometimes I don't think I could take any more pain without losing it.

I fantasize running around the house screaming at the top of my lungs, smashing walls and pulling out my hair. I imagine having a toe cut off to counter the pain in my face.

What most of us with chronic pain want is to NOT have to take any pills at all, to just not hurt.

Passionflower, valerian, L-theanine--for me these were all a waste of money. I'm allergic to camomile and St. John's Wort makes me dizzy. Aspirin and ibuprofen kill my stomach.

If anyone else knows of anything that helps. . .

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MariaA
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I don't know if you're referring to the same kind of pain that I have, but I've found that accupuncture was REALLY good at getting rid of my pain. Mine was a sorta all-over burning sensation, mostly on my back, a soreness not related to joints or specific muscles. It felt like it was very 'surface'- again, not like sore muscles.

In different towns accupuncture costs vary, but it's a very effective treatment for pain. Sometimes you might be able to find free or inexpensive accupuncture through one of the accupuncture schools .

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Lioness
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Nebula2005, reading your post was SO funny for me!

Not the pain part, but that I was driving home and all I wanted to do was get out of my car and run around screaming.

Then, I got home and wanted to put my head through a wall. I actually picture doing these things in my mind. So I was thinking, "why do I think of putting my head through a wall" and I came to the conclusion that it was a way to "off set" the rest of the pain I was feeling.

And, I always wish I could touch someone and they would feel the pain I feel. Then they would REALLY understand. I don't think most people could ever begin to imagine it.

I don't wish this pain on anyone, but if only for a minute they could feel what it is like.

Some days the vicodin works better and quicker than others. Lately, not so much.

I don't take the same amount every day. A few years ago, I was really sick. I was at the point I could only have one protein shake a day, and it took the whole day to get it down. It was mostly pain keeping me from eating.

They were getting ready to put a feeding tube in me.

And I LOVE food! When I was first having trouble eating, I would put turkey, pizza or what ever in a blender with water so I could eat. But, that became too much too.

Any ways, I was seeing several doctors. Neuro, pain managment, dr's for the FM, and for Eagles Syndrome (we didn't know about the Lyme yet).

The pain management dr had me taking the vicodin at scheduled doses.

Then I sort of went in to a remission. So I cut back. Sometimes I would only need it to sleep. But, now it has been getting real bad again.

I am sorry you feel so much pain too. It is a little comforting to know that someone else thinks the same way I do though. To know I am not crazy for the way my mind thinks when the pain gets unbearable.

I do believe that the pain alone can push someone over the edge. I just wish it would stop.

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Lioness
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Thank you MariaA. My pain is not all the same. I have the muscle pain, the myofacia pain and the nerve pain. I also have it in my joints now, real bad.

It varies. Lately, I have had a lot of the deep burning. My back, neck, knees and legs seem to be the worse.

I used to see a massage therapist who also teaches Reiki and is a physical therapist. I was seeing a Chiropractor too. It helped a lot but is too expensive for me right now.

My old LLMD who moved away suggested I try acupuncture. I know my father did but had so-so results.

I will look into the schools. That is a good idea.

Do you have to go often for results?

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Andie333
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I also second what Maria suggested about acupuncture. I've gotten weekly treatments since prior to starting abx, and I really believe it's made a world of difference in my recovery.

That, plus the Chinese herbs and teas my acpuncturist formulates for me.

It IS expensive, but maybe there are ways to cut down the costs. I barter for acupuncture treatments. If you don't have a way to do that, maybe approach the best acupuncturist in your area and suggest he or she treat you as a Lyme test case.

I live in an endemic area, Lioness, and your part of the country is also seeing a swell of Lyme cases. my acupuncturist has learned a LOT about Lyme from treating me and is now getting an influx of Lyme patients.

I do pay for the herbs, though, and I suspect any practitioner would need that payment. Just a thought.

For me, pain meds did nothing against that searing, awful pain. I hope you're able to find some relief!

Andie

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MariaA
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Hmmm, I was going about every two weeks for several months becasuse I had tendinitis. It was great for both the tendinitis and the Lyme pain. At the time we didn't know it was Lyme that was wrong with me, and it was only moderately successful at helping my other Lyme symptoms (primarily energy) but I didn't stick with it long enough to give it a real try. They would have recommended going much longer.

The pain reduction lasted for many weeks after the accupuncture stopped, though, and the accupuncture was instantly effective for the type of pain I had.

traditional chinese herbalism and accupuncture
My accupuncturist also gave Chinese herbs for the condition she detected. It's a really different approach to herbalism- they might take, for example, several ulcer patients, and prescribe completely different herb combinations for different people depending on the patient's constitution, pulse type, and individual ulcer symptoms (there's actually a study that showed that they were very effective by Western standards at treating the ulcers regardless of which method they used to treat those patients).

I have been told that traditionally in China, they focused mostly on herbs (and diet), with a smaller focus on accupuncture. However, in the West, TCM (traditional chinese medicine) practitioners tend to emphasise accupuncture over herbs, partially because of the extreme bias against herbalism that exists in Western allopathic medicine.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
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SunRa
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Hi Lioness
if you're in the Boston area and want more info on affordable acupuncturists/clinics, PM me.

also, Hypericum Perforatum (in classical homeopathic form, not the herb) is a great remedy for nerve pain...may not help, but it can't hurt. best wishes [Smile]

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MariaA
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There is a big difference in pricing for accupuncture in different cities (I've seen it be anything from $170 (pricey clinic in a town with only one practitioner and no Chinese population) to $25 (the latter is the Chinatown price in some cities).

Sometimes accupuncturists offer low-cost accupuncture through charity programs, for instance I've seen it offered at various drop-in clinics that offer services to drug users, prostitutes, and HIV patients (To go looking for this low-cost accupuncture ask at the accupuncture schools if there is a low-cost session being offered anywhere in your area).

The folks offering charity low-cost sessions are usually willing to work with people who don't fall into their 'crisis' patient category (ie YOU don't have to be a drug addict seeking addiction help- because the treatment they're giving at these sessions isn't specifically just for addiction, it's more for balancing whatever symptoms you have that are out of balance. You won't find accupuncurists who specialise in Lyme, for instance, it's not how the modality works).

If you're disabled from Lyme and can't afford your medical bills, it's quite possible that you might find someone who will give you low-cost care, more likely than talking an MD down in price.

I've heard that the people practicing in Chinatowns will have a totally different manner than you might be used to from MD's, but they're probably much more talented accupunturists than American-born folks. I've also heard that not all of them will treat non-Chinese Americans (I heard this from several very sympathetic-to-accupuncure, sympathetic-to-the-Chinese-community healthcare practitioners, at least in my town of Oakland).

--------------------
Symptom Free!!! Thank you all!!!!

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stella marie
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Lioness,

I have just started Lyrica and it has help me get a certain quality of life back.

I had such pain/numbness in my face, mouth, hands & feet. I also had the head {{{vibrations}}}.

I would wake up and think "Oh crap I'm still here." [Frown]

I was doing pretty good until the last 4 months and bam, it just got worse and worse. Down I slid.

It does nothing for the joint pain but I can live ok so far w/ that.

Just my experience so far, good luck.

Stella Marie

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Stella Marie

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Laurie
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I have had acupuncture for sinus pain and am a great believer in it, but it did NOTHING for my neuropathic pain. I was so desperate I was collecting coins and rolling them out on a TV tray and taking them to the bank to get money to pay for the treatments.

What saved my life was Neurontin, which is tough sometimes to handle -- sleepiness and weight gain -- plus a $1 tub of blue menthol gel I found in an odd lot store. But what about this GABA I have heard of?

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BartonFink
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Well I have this same problem. Burning pain in the limbs mostly. Like there is acid below the skin. It's just awful. Has anyone tried hemp seed oil? I tried it a couple of days ago and I felt a helped a bit but at the same time it made me feel strangely dizzy and anxious so I stopped it.

Oh tried acupuncture once too. It did nothing.

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Please dont suggest "ask your LLMD" because we dont have them here in this country... [Frown] I just have to count on you fellow patients. [Smile]

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TerryK
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quote:
Does anyone know of a natural way to treat the nerve pain?
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm
"... Vitamins E, B1, B6, B12, and niacin are essential to healthy nerve function. Thiamine deficiency, in particular, is common among people with alcoholism because they often also have poor dietary habits. Thiamine deficiency can cause a painful neuropathy of the extremities. Some researchers believe that excessive alcohol consumption may, in itself, contribute directly to nerve damage, a condition referred to as alcoholic neuropathy."

Sorry, I haven't read everyones responses but I do use all the vitamins listed here. I've never been a drinker. I'm sure my pain is from lyme. The burning pain for me was much better on minocycline. I'm on doxycycline now and it is better than it was before treatment but my feet are bothering me quite a bit still - hands are much better though. Also, keep blood sugars under control. That can often yield immediate relief for some people.

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davidx
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One thing I wanted to add was that if you have nerve pain in certain areas, lidocaine patches might be helpful. I have nerve pain in my legs and have tried these patches and they do help a little bit at least.

I hate to even use the word "pain" when it comes to these nerve sensations because it's almost not even an appropriate word. The pain felt by nerves, in my mind, is so much different that pain felt when you twist your ankle sprain your wrist.

I tried accupuncture for a period of time in NYC not to far from where I work. The one thing I would say about accupuncture is that it is very relaxing but for me at least it did not help the symptoms.

I have read that bart can cause nerve pain but also that lyme can. Does anyone know whether both can cause the same type of pain?

-David

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Same nightmare, different day!

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TerryK
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Townsend letter is usually a good source of info.
http://www.townsendletter.com/AugSept2006/painfree0806.htm

The article is too long to post here but you will find some interesting info in it.

I will say that I've had very good pain relief using amino acids. Tryptophan in particular. I had a 50% reduction in pain using tryptophan and mixing in a few others to balance. Get with a naturopathic doc and get some help since you can have difficulties supplementing with amino acids depending on your body. I had an amino acid test done to determine my status before supplementing.
Terry

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davidx
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I wanted to post a follow-up to everyone here with nerve-related pain. Have you all been on IV treatment for your lyme or co-infections? I have not been on IV in the 1 year I have been treated and continue to wonder whether this is the "key" to getting rid of the nerve related pain.

Thanks,
David

--------------------
Same nightmare, different day!

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BartonFink
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quote:
Originally posted by TerryK:
Townsend letter is usually a good source of info.
http://www.townsendletter.com/AugSept2006/painfree0806.htm

The article is too long to post here but you will find some interesting info in it.

I will say that I've had very good pain relief using amino acids. Tryptophan in particular. I had a 50% reduction in pain using tryptophan and mixing in a few others to balance. Get with a naturopathic doc and get some help since you can have difficulties supplementing with amino acids depending on your body. I had an amino acid test done to determine my status before supplementing.
Terry

Terry, what kind of amino acid test did you do? Expensive?

--------------------
Please dont suggest "ask your LLMD" because we dont have them here in this country... [Frown] I just have to count on you fellow patients. [Smile]

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BartonFink
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quote:
Originally posted by davidx:
I wanted to post a follow-up to everyone here with nerve-related pain. Have you all been on IV treatment for your lyme or co-infections? I have not been on IV in the 1 year I have been treated and continue to wonder whether this is the "key" to getting rid of the nerve related pain.

Thanks,
David

Nope, never been on IV treatment.

--------------------
Please dont suggest "ask your LLMD" because we dont have them here in this country... [Frown] I just have to count on you fellow patients. [Smile]

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BartonFink
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About those natural treatments: has anybody tried a product called NerveFix? Here is some info about it: http://www.discountvitaminsandherbs.com/system/module-product_page-detail_bytype-_typeval-_pid-4151#

--------------------
Please dont suggest "ask your LLMD" because we dont have them here in this country... [Frown] I just have to count on you fellow patients. [Smile]

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Jill E.
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I haven't tried the NerveFix formula, but I see in contains Benfotiamine (which is a type of thiamine that is supposed to be absorbed better, I think). I have seen on another Lyme website some fans of Benfotiamine for nerve issues.

However when I asked about it on Lymenet quite some time ago, people did not have many positive things to say.

Anyone try it lately?

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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BartonFink
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Yes I have tried benfotiamine. Helps a bit maybe but not enough. Havent taken it for long though and megadoses like 600 mg.

--------------------
Please dont suggest "ask your LLMD" because we dont have them here in this country... [Frown] I just have to count on you fellow patients. [Smile]

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Sonja
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Hi there,

I apologize for posting almost the same question,but this pain makes you want to jump out of your skin, doesn't it?!?

Well, I felt very confused when taking Neurontin, I took 600 mg a day and fell into a coma for 20 hours.

Lyrica made me so sick, that I only took one pill and decided, I couldn't tolerate it. Amytriptilin did nothing for me, I now take Tegretol and Dilantin plus Vicodin when it's getting too bad. I need about 750mg to get the pain under control and wouldn't want to be without it.

Ask your doc about Tegretol. Painwise, I don't know. Buhner has some advice on herbs for pain, but with the seizure drugs it could be a problem.

I hope for all of us pain patients, that it will go away soon and we get our lives back!!

Keep us posted and good luck,

Sonja

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Sonja
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Hi there,

I apologize for posting almost the same question,but this pain makes you want to jump out of your skin, doesn't it?!?

Well, I felt very confused when taking Neurontin, I took 600 mg a day and fell into a coma for 20 hours.

Lyrica made me so sick, that I only took one pill and decided, I couldn't tolerate it. Amytriptilin did nothing for me, I now take Tegretol and Dilantin plus Vicodin when it's getting too bad. I need about 750mg to get the pain under control and wouldn't want to be without it.

Ask your doc about Tegretol. Painwise, I don't know. Buhner has some advice on herbs for pain, but with the seizure drugs it could be a problem.

I hope for all of us pain patients, that it will go away soon and we get our lives back!!

Keep us posted and good luck,

Sonja

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TerryK
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quote:
Terry, what kind of amino acid test did you do? Expensive?
I had the Metamatrix test 0490 ION profile with amino acid 40.

http://www.metametrix.com/FAQs/#FAQID4

I don't know how much just the amino acid test would be. You could call them and get pricing.
Terry

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DolphinLady
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The photonic stimulator helps me with all types of pain but it is especially effective for nerve pain. It uses near infrared light and is manufactured by Bales Scientific.

You may want to contact them for info on a practitioner in your area. Sometimes 15 minutes of light application is all that is needed. Sometimes you need to do a series (3 or more).

Good luck to you.

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BartonFink
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quote:
Originally posted by DolphinLady:
The photonic stimulator helps me with all types of pain but it is especially effective for nerve pain. It uses near infrared light and is manufactured by Bales Scientific.

You may want to contact them for info on a practitioner in your area. Sometimes 15 minutes of light application is all that is needed. Sometimes you need to do a series (3 or more).

Good luck to you.

Hmm. Is that same as LLLT (low laser therapy)?

--------------------
Please dont suggest "ask your LLMD" because we dont have them here in this country... [Frown] I just have to count on you fellow patients. [Smile]

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Aniek
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BartonFink,

I got an amino acid level test through LabCorp. I don't know the official name, but it was a 24 hour urine catch. That means I had to collect all my urine and keep it in the fridge for 24 hours.

In my case, it was covered by insurance. So I have no idea the price.

My doctor is very knowledgeable about amino acids, so he then picket which essential amino acid supplement was best for me, and added some individual aminos too.

--------------------
"When there is pain, there are no words." - Toni Morrison

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lymiebean
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Hi lioness and all,

I can hardly believe what is happening to me. I am 10 years with lyme and probably coinfections as well given the number of bites I havehad. I had to stop pain meds due to side effects, no abx due to a lifetime of having taken them for other stuff.

I was just like you, I wanted to scream, sometimes I did, I wanted to claw my eyes out and peel my skin off. The pain in my joints crippled me and the migrating chest pains kept me from sleep.

I had halluciations of all the senses and I wanted to die. I came here, to lymenet and all that started to change. A member called farah posted about her esperiences with essential oils. It didn't seem possible, that essential oils could take the place of my beloved opiates, but I had no choice.

It has been three months that I have followed farah's protocol and the results have been amazing. Sp[irochetes in my face poured out (no, not the keets, but their toxins, right?) from weird cones that formed along my jaw line and oozed.

After the first treatment, my sleep improved and now I can get 6 or 7 hours before the keets get me up. When they zap at me I zap right back with the oils. God help me, I got another bite just a few days ago and I went after it with an obsessive vengence. So far, I haven't felt any extra or renewed symptoms.

Every single symptom has improved with this treatment, especially pain. Although sometimes I would give an arm to have that soothing rest from pain that opiates give, the terror that I felt at the thought of this disease wityhout pain meds has eased. With this treatment, I have been three months and have had to resort to a xanax on only one occasion.

--------------------
na

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farah
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Hi Lioness,

You may want to use essential oils diluted and used externally at the site of the nerve pain.

The essential oils were the cornerstone of my recovery from Lyme. They helped incredibly well with my pain issues.

Even the zinging nerve pain, and the weird creepy crawlies, the migraines.

I also used them in places I was having weakness, spasms, and other symptoms.

I have noticed that prescription painkillers often aren't that effective for people with Lyme, because they don't deal with the root of the pain problem.

I found that the essential oils worked very well for me in this regard. I believe they work because they actually kill off bacteria in the area of the pain, thus getting rid of the root cause.

The essential oils are natural but very potent. I think they help not just pain but alleviate Lyme in general.

None of this is proven of course, but I am speaking from my personal experience using the oils consistently over time.

I have lots of other posts about the essential oils, if you do a search on previous posts of mine, you can find a lot of info on this therapy.

Farah

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Marnie
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You could try a local warm castor oil pack applied topically to the effected area.

Research this and the name "Edgar Cayce".

Posts: 9402 | From Sunshine State | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Radha
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could you please list the essential oils that helped for the pain? thanks
radha

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DolphinLady
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BaartonFink, sorry I've never heard of the LLLT machine so can't compare.
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susan2health
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Low carb diet dramatically reduces "zaps" for me.

Also, Celadrin, natural supplement/fat reduces inflammation and does not hurt my stomache at all.

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farah
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Hi Radha,

I used a combination of eucalyptus, lemon, frankincense, thyme, patchouli, geranium, and lavender oil in a base of grapeseed oil. I used a very strong concentration of essential oils where 15%-20% is essential oil in a base of 80-85% grapeseed oil.

Farah

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hopingandpraying
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I just wanted to suggest using MSM (an organic sulfur, not to be confused with sulfites) which I read about on this website and in Dr. Jacob's book called "The Miracle of MSM". Many people use it for Rheumatoid Arthritis and other sorts of inflammation and pain.

My 14 yr. old son uses it (2,000mg/day) plus goes for acupuncture once a week. He says it helps with spasms and pain. He started out at 1,000 mg/day.

You need to ramp up on it but higher doses are not toxic. For adults you probably need to slowly take more up to bowel tolerance. Check out the recommendations in the book.

Hope this helps!

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BugBarb
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Currently, my only symptom is "nerve pain" in its many manifestations. It makes me anxious and the thought of having it uncontrolled is...well....I will do whatever it takes to control it.

I started on 50mg of lyrica. Worked great. Felt like I smoked marijuana and gained 10 pounds, couldn't think to work, and had insomnia.

Now I'm on225mg of Lyrica, will need approval for more next visit. I think it has decreased my ability to clot(blood). Still works great.

I take it after work or at the end of the day when I don't need the educated part of my brain. I take benadryl and melatonin to sleep. I get up in the middle of the night and eat and barely remember it. I have gained at least 15 pounds. I do need to exercise. Taking vitamin K in addition to the b12, folic acid, e, alpha lipoic and omega 3.

I look at it as a temporary measure, until I can get my GP to "fix" me somehow. I'd like a trial of antibiotics...they won't hurt..

--------------------
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  |  IP: Logged | Report this post to a Moderator
bv
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I have horrible buning skin on my back, face, stomach & legs. Also get muscle twitches in my legs.

Temazepam (sleep aid) really calms down the burning skin & muscle twitches. Doc says it is b/c of gabba created by the temazepam.

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