new member

[Guest guest]

Hi,

I'm new to the group but not to chronic pain. I began in 2000 to

have sciatic pain down my left leg.

I had several injections which helped in the beginning, but by 2002 had stopped

working except right after each injection. Then it was suggested that a

laminectomy would help so one was done at the L4-L5 level.

This didn't stop the pain. It increased and now was in both hips and up my

back.

I was referred to a neurosurgeon who worked with me for a year to try to correct

the pain. Finally he told me that my spine was very unstable and that he would

recommend a fusion at the L5-S1 level which would hopefully ease the pain.

It did stabilize my spine but didn't stop the pain. I was put on duragesic patch

and ultimately as high as 100mg with Oxycodone as a kicker.

At this point, I began seeing a pain management specialist who has been working

with me ever since. She has withdrawn me (very slowly) from the narcotics and

implanted a Spinal Cord Stimulator.

This device does help and I am able to get through each day with the help of a

low dose Vicodin and Advil. I am still in pain, but have found that getting up

and getting out of my house--working instead of feeling sorry for myself is my

best therapy.

I do work out with a trainer 1-2 days a week and also go to PT every other week.

My life is far from perfect, but I have come a long, long way.

All I can say to any of you who suffer is that sometimes it gets better but it

requires patience and endurance. I have been fortunate to find incredibly great

and caring doctors all of whom believe that God works through their hands and

without God, they would not be able to work the miracles that they do. Thanks

for letting me share my story.

Miriam

[Guest guest]

Hi Arlene (and others),

You asked about the Spinal Cord Stimulator. I will refer you to the

ANS web site. That is what I have had implanted and you can find

information there. www.ans-medical.com.

What I can tell you is that NOTHING is 100%. It is not like a TENS unit, in

that the stimulator is implanted in your hip and works on a 7 year battery. The

battery has to be recharged about every two weeks, depending on how often you

use the stimulator.

It sends impulses to your brain, which interfere with the pain and " tell " your

brain that there is no pain. This technology has been around for 30 years, so

it is tried and tested.

It has given me quite a bit of relief and I use it fairly often. I would be VERY

careful with any more surgery if I were you.

I know that I would not have surgery if I had it to do over again. I feel that

the surgery, especially the laminectomy was the major cause of my having to have

a fusion. It seems that one led to the other and in the laminectomy, too much

bone was shaved off, leaving my spine very shaky and fragile.

My neurosurgeon did the fusion, only as a last resort to restore stability to my

spine. I hope I have helped you some. I think you will get lots of info from

the above web site.

Miriam

[Guest guest]

Dear Miriam...Thanks for the website about the spinal cord stimulator. Also for

the advice about having another surgery. In fact, I was told by the referring

neurosurgeon that second surgeries always carry more risks. I don't need that

concern, nor do I need any more pain. Thanks...Arleen

Miriam wrote: Hi Arlene (and others),

You asked about the Spinal Cord Stimulator. I will refer you to the

ANS web site. That is what I have had implanted and you can find

information there. www.ans-medical.com.

[Guest guest]

Dear Miriam...Thanks for the website about the spinal cord stimulator. Also for

the advice about having another surgery. In fact, I was told by the referring

neurosurgeon that second surgeries always carry more risks. I don't need that

concern, nor do I need any more pain. Thanks...Arleen

Miriam wrote: Hi Arlene (and others),

You asked about the Spinal Cord Stimulator. I will refer you to the

ANS web site. That is what I have had implanted and you can find

information there. www.ans-medical.com.

What I can tell you is that NOTHING is 100%. It is not like a TENS unit, in that

the stimulator is implanted in your hip and works on a 7 year battery. The

battery has to be recharged about every two weeks, depending on how often you

use the stimulator.

It sends impulses to your brain, which interfere with the pain and " tell " your

brain that there is no pain. This technology has been around for 30 years, so it

is tried and tested.

It has given me quite a bit of relief and I use it fairly often. I would be VERY

careful with any more surgery if I were you.

I know that I would not have surgery if I had it to do over again. I feel that

the surgery, especially the laminectomy was the major cause of my having to have

a fusion. It seems that one led to the other and in the laminectomy, too much

bone was shaved off, leaving my spine very shaky and fragile.

My neurosurgeon did the fusion, only as a last resort to restore stability to my

spine. I hope I have helped you some. I think you will get lots of info from the

above web site.

Miriam

---------------------------------

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[Guest guest]

Hi all,I have just recently been diagnosed with Lyme disease, after 20 years of symptoms and been misdiagnosed with motor neuron disease (like ALS) for 10 years. Sadly and luckily there is only one doctor in Western Australia where I live that will treat people with chronic Lyme. He has just given me abx for babesia which scares me because I don't know how he diagnosed me with it, he doesn't explain thing very well and it probably didn't help that I had a emotional breakdown in his office. I have never had abx for lyme or babesia before and after doing research and reading lots of post here I'm really worried about starting them and potentially

making everything thing worse. The problem is that after reading the posts of this group I am not sure how to get hold of some of the things you guys talk about. Like essiac tea does anyone know where I can get it from, I don't think mountain rose herbs sends to Australia. Also trying to get a rife

machine, I've sent some email inquiries about doug coils but haven't had responses as yet. I'm not sure if I can get one sent her. Does anyone know who is the best person to contact about one.it is really hard getting advice or help in australia because lyme is not well known about and 95% of health practitioners and doctors either don't know about or deny it exists here. But I definitely got bitten in western australia however I don't remember, what I do remember is that my life completely changed at 15 and I just thought it was puberty.So any help or advice for me as I start the treatment for Lyme would be appreciated Thx so much Sharee

[Guest guest]

Sharee welcome i am sure jimjax will be responding to you hes a encycopedia of info.He will guide you with great sound advice and get you on your way here.

Subject: new memberTo: "Lyme_and_Rife " <Lyme_and_Rife >Date: Friday, August 10, 2012, 11:51 PM

Hi all,

I have just recently been diagnosed with Lyme disease, after 20 years of symptoms and been misdiagnosed with motor neuron disease (like ALS) for 10 years. Sadly and luckily there is only one doctor in Western Australia where I live that will treat people with chronic Lyme. He has just given me abx for babesia which scares me because I don't know how he diagnosed me with it, he doesn't explain thing very well and it probably didn't help that I had a emotional breakdown in his office. I have never had abx for lyme or babesia before and after doing research and reading lots of post here I'm really worried about starting them and potentially making everything thing worse.

The problem is that after reading the posts of this group I am not sure how to get hold of some of the things you guys talk about. Like essiac tea does anyone know where I can get it from, I don't think mountain rose herbs sends to Australia.

Also trying to get a rife machine, I've sent some email inquiries about doug coils but haven't had responses as yet. I'm not sure if I can get one sent her. Does anyone know who is the best person to contact about one.

it is really hard getting advice or help in australia because lyme is not well known about and 95% of health practitioners and doctors either don't know about or deny it exists here. But I definitely got bitten in western australia however I don't remember, what I do remember is that my life completely changed at 15 and I just thought it was puberty.

So any help or advice for me as I start the treatment for Lyme would be appreciated

Thx so much

Sharee

[Guest guest]

Hi Sharee! I also have lyme and live in Australia! I was very sick with balance problems, cronic fatigue and neuro lyme and struggled to get help and understand what to do. Buying a doug coil from the states was overwhelming...most of the builders were swamped and took 6 months or more to supply....you also had to buy all of the components separately which from Australia with the time zone differences and huge postage charges was expensive and difficult. I eventually found a company called Action coil run by roger sirmon who was very helpful. I bought a machine from him and called him when it arrived and he talked me through set up and use as I was so neuro I couldn’t make sense of it on my own. He was so horrified by how hard it was to order from Australia for the other parts needed to run the coil, that he called the companies on my behalf and chased the parts for me at no extra cost. When my mum ordered one from him he gave her an upfront price for the lot and organised it all to by pass the dramas. The only thing she bought from here was the transformer to step the aussie power down to run the American made machine. Much cheaper to buy here and much cheaper postage...if you decide to buy I’ll try to find the name of the company mum bought the transformer from as their price , postage and service were fantastic. It is hard to treat for lyme and co infections but it is the only thing that seems to make us better long term and stop the ‘down ward slide’. Remember to Detox as much as possible and stay on the groups for support when you need it. Toxins from die off are what makes us so sick and we Have to deal with them!!!! Don’t worry about breaking down in his office lyme docs are used to this, just ask more questions when you see him next...With lyme brain I pre write my questions on a pad until my next visit and then hit my doc with them. I have ordered herb from mountain rose herbs with no problems, but not the essaic tea yet. I bought elsewhere at an exhorbitant cost in Australia and will not do so again. I buy most things overseas as even with postage it is a fraction of the cost. All the best with your start. From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of Sharee Sent: Saturday, 11 August 2012 1:52 PMTo: Lyme_and_Rife Subject: new member Hi all, I have just recently been diagnosed with Lyme disease, after 20 years of symptoms and been misdiagnosed with motor neuron disease (like ALS) for 10 years. Sadly and luckily there is only one doctor in Western Australia where I live that will treat people with chronic Lyme. He has just given me abx for babesia which scares me because I don't know how he diagnosed me with it, he doesn't explain thing very well and it probably didn't help that I had a emotional breakdown in his office. I have never had abx for lyme or babesia before and after doing research and reading lots of post here I'm really worried about starting them and potentially making everything thing worse. The problem is that after reading the posts of this group I am not sure how to get hold of some of the things you guys talk about. Like essiac tea does anyone know where I can get it from, I don't think mountain rose herbs sends to Australia. Also trying to get a rife machine, I've sent some email inquiries about doug coils but haven't had responses as yet. I'm not sure if I can get one sent her. Does anyone know who is the best person to contact about one. it is really hard getting advice or help in australia because lyme is not well known about and 95% of health practitioners and doctors either don't know about or deny it exists here. But I definitely got bitten in western australia however I don't remember, what I do remember is that my life completely changed at 15 and I just thought it was puberty. So any help or advice for me as I start the treatment for Lyme would be appreciated Thx so much Sharee

[Guest guest]

Hi SylviaApparently in order to use a rife machine effectively, you first have to know the frequency effective for each of the buglets that you want to kill off. Each has its own frequency.So the treatment seems to be absolutely specific to the disease elements, as long as you are properly informed of the frequencies, and know which bugs you actually have.I have not yet got a rife machine and am waiting for someone to test which frequency kills Borrelia, which I hope he will get round to doing this summer. Then I am planning to buy one, or if possible, hire one. Then of course you need someone to show you how to use it, and how to know how long and how frequently you should use it.Sue To: Lyme_and_Rife Sent: Tuesday, August 7, 2012 2:52 PM Subject: New member

pparentlyciding which one since I don't really understand the differences of all the various types even though Ive read up on them. It's just too complicated!

I need something that will be easy to use and understand! That treats lyme and bartonella and other possible co-infections.

Any help is much appreciated!

Ricci

[Guest guest]

Hi Sharee,

I come form where you are went out of the weel chair and grave I will post today for you what i did to get outof past progressing paralysis that were first diagnosed as MS then as ALS . I did all the reatement of the hearth before I fond the right combination fo rme and it was not antibiotics

Talk to you later to day I am in a hurry now

Kinldy marie

To: "Lyme_and_Rife " <Lyme_and_Rife > Sent: Friday, August 10, 2012 11:51 PMSubject: new member

Hi all,

I have just recently been diagnosed with Lyme disease, after 20 years of symptoms and been misdiagnosed with motor neuron disease (like ALS) for 10 years. Sadly and luckily there is only one doctor in Western Australia where I live that will treat people with chronic Lyme. He has just given me abx for babesia which scares me because I don't know how he diagnosed me with it, he doesn't explain thing very well and it probably didn't help that I had a emotional breakdown in his office. I have never had abx for lyme or babesia before and after doing research and reading lots of post here I'm really worried about starting them and potentially making everything thing worse.

The problem is that after reading the posts of this group I am not sure how to get hold of some of the things you guys talk about. Like essiac tea does anyone know where I can get it from, I don't think mountain rose herbs sends to Australia.

Also trying to get a rife machine, I've sent some email inquiries about doug coils but haven't had responses as yet. I'm not sure if I can get one sent her. Does anyone know who is the best person to contact about one.

it is really hard getting advice or help in australia because lyme is not well known about and 95% of health practitioners and doctors either don't know about or deny it exists here. But I definitely got bitten in western australia however I don't remember, what I do remember is that my life completely changed at 15 and I just thought it was puberty.

So any help or advice for me as I start the treatment for Lyme would be appreciated

Thx so much

Sharee