For Vicki - Re: Please help~ Peripheral Neuropathy -MAZ

[Guest guest]

what kind of nerve issues? i was losing feeling in my fingers in right

hand...they said carpal tunnel so i had that surgery. feelings in fingers still

gone and now my left arm/hand goes numb from the shoulder down. i was wondering

what the hell was going on now. i have ra too....oh the joy!

sue

rheumatic Re: For Vicki - Re: Please help~ Peripheral Neuropathy

-MAZ

Hi Vicki,

Jeff makes a very good point...for something as serious as PN, one should

seek out several medical opinions to get a proper diagnosis. Having covered

all

those corners, at least you will know what you're dealing with and more able

to

make an informed choice as to what treatments you wish to pursue.

Having said that, it seems you have already covered a lot of corners,

deciding you aren't willing to go the conventional treatment route, and have a

bit of

the ol' " maverick " in you, wanting to be your own health advocate. Can't

blame you - while there are some fabulous doctors out there who are great

diagnositicians and treat the best they know how with the meds at their

disposal, they

don't always have all the answers. So, on the flipside, it's also true that

we can run around to any number of specialists and receive a number of

diagnoses based on each one's area of expertise! If for no other reason, being

proactive in your own health and road back to wellness should serve you very

well, so

you can at least decide for yourself.

Just including a few links that may help in your search....

Here is a link to some interesting video clips from a Lyme Conference. My

doc, Dr P (seventh down in the list), is speaking on the pleomorphic nature of

Bb

and its relationship to MS. You'll also find some interesting video clips of

talks by Garth Nicholson, Trevor Marshall and Lida Mattman...all experts in

the field of the " Infection Connection. "

http://www.ctlymedisease.org/videoclips.htm

Columbia University is doing some fascinating research on the

neurodegenerative disorders associated with chronic Lyme.

http://www.columbia-lyme.org/

Chronic neurotoxins are also something you may find interesting to research:

http://www.neuraltherapy.com/NeurotoxinProtocol040406.pdf

These are only suggestions for you to research and do hope you find your

answers soon. If you're willing to travel as far as southwestern CT (about 90

mins

out of NYC) then I'd be happy to give you the contact info of my my LLMD

whose area of interest is in Lyme and its connection to " autoimmunity. " Just

send

me an email with the subject header, " Lyme Doc. " He may or may not be able to

help you, but if you're looking for a new LLMD, he's considered to be one of

the best in the US.

All the best to you in your seaches, Vicki.

Peace, Maz

[Guest guest]

thanks mary.....i guess i should mention this numbness to my rheumy. it is from

inflammation i know that...it cannot be from flexing wrists even in sleep

because i have no range of motion at all. well i guess it will probably be yet

another drug he will put me on.

sue

rheumatic Re: For Vicki - Re: Please help~ Peripheral Neuropathy

-MAZ

Hi Vicki,

Jeff makes a very good point...for something as serious as PN, one should

seek out several medical opinions to get a proper diagnosis. Having covered

all

those corners, at least you will know what you're dealing with and more able

to

make an informed choice as to what treatments you wish to pursue.

Having said that, it seems you have already covered a lot of corners,

deciding you aren't willing to go the conventional treatment route, and have a

bit of

the ol' " maverick " in you, wanting to be your own health advocate. Can't

blame you - while there are some fabulous doctors out there who are great

diagnositicians and treat the best they know how with the meds at their

disposal, they

don't always have all the answers. So, on the flipside, it's also true that

we can run around to any number of specialists and receive a number of

diagnoses based on each one's area of expertise! If for no other reason, being

proactive in your own health and road back to wellness should serve you very

well, so

you can at least decide for yourself.

Just including a few links that may help in your search....

Here is a link to some interesting video clips from a Lyme Conference. My

doc, Dr P (seventh down in the list), is speaking on the pleomorphic nature of

Bb

and its relationship to MS. You'll also find some interesting video clips of

talks by Garth Nicholson, Trevor Marshall and Lida Mattman...all experts in

the field of the " Infection Connection. "

http://www.ctlymedisease.org/videoclips.htm

Columbia University is doing some fascinating research on the

neurodegenerative disorders associated with chronic Lyme.

http://www.columbia-lyme.org/

Chronic neurotoxins are also something you may find interesting to research:

http://www.neuraltherapy.com/NeurotoxinProtocol040406.pdf

These are only suggestions for you to research and do hope you find your

answers soon. If you're willing to travel as far as southwestern CT (about 90

mins

out of NYC) then I'd be happy to give you the contact info of my my LLMD

whose area of interest is in Lyme and its connection to " autoimmunity. " Just

send

me an email with the subject header, " Lyme Doc. " He may or may not be able to

help you, but if you're looking for a new LLMD, he's considered to be one of

the best in the US.

All the best to you in your seaches, Vicki.

Peace, Maz

[Guest guest]

Thanks everyone for your help. I am already taking VitB12 the methyl one,

CQ10 as well as ALA and maybe will add ALC although not sure how much to take. I

take more than the recommended dosage since I am taking for major issue but dont

know when it can be too much. I am also constantly massaging my hands and feet

but its not enough and cant do that at work or when out. Some people on

here sounds like they have carpal tunnel which too is nerve related but

different. Online there was a lot of explanation on PN, it is some center in

Chicago that specializes in it and they talk about the different types. But dont

offer a solution. Medicine has failed me so much, I still cant believe doctors

are allowing for me to walk around dizzy, with nerve pain that allegedly is

damaging my nerves and they cant stop, i say allegedly as i cant believe what

they tell me without wanting to shoot myself so I try to stay positive, not to

mention the sjogrens, I wont believe

my secretion glands are being destroyed being that people with joints  being

destroyed do so well in Mino or Doxy but RA and some other conditions also seem

to generally respond better to AP more than other rheumatic diseases and I dont

know why.

From: Sue Emrick <semrick@...>

Subject: Re: rheumatic Re: For Vicki - Re: Please help~ Peripheral Neuropathy

-MAZ

rheumatic

Date: Tuesday, May 6, 2008, 5:58 PM

thanks mary.....i guess i should mention this numbness to my rheumy. it is from

inflammation i know that...it cannot be from flexing wrists even in sleep

because i have no range of motion at all. well i guess it will probably be yet

another drug he will put me on.

sue

rheumatic Re: For Vicki - Re: Please help~ Peripheral Neuropathy -MAZ

Hi Vicki,

Jeff makes a very good point...for something as serious as PN, one should

seek out several medical opinions to get a proper diagnosis. Having covered all

those corners, at least you will know what you're dealing with and more able to

make an informed choice as to what treatments you wish to pursue.

Having said that, it seems you have already covered a lot of corners,

deciding you aren't willing to go the conventional treatment route, and have a

bit of

the ol' " maverick " in you, wanting to be your own health advocate. Can't

blame you - while there are some fabulous doctors out there who are great

diagnositicians and treat the best they know how with the meds at their

disposal, they

don't always have all the answers. So, on the flipside, it's also true that

we can run around to any number of specialists and receive a number of

diagnoses based on each one's area of expertise! If for no other reason, being

proactive in your own health and road back to wellness should serve you very

well, so

you can at least decide for yourself.

Just including a few links that may help in your search....

Here is a link to some interesting video clips from a Lyme Conference. My

doc, Dr P (seventh down in the list), is speaking on the pleomorphic nature of

Bb

and its relationship to MS. You'll also find some interesting video clips of

talks by Garth Nicholson, Trevor Marshall and Lida Mattman...all experts in

the field of the " Infection Connection. "

http://www.ctlymedi sease.org/ videoclips. htm

Columbia University is doing some fascinating research on the

neurodegenerative disorders associated with chronic Lyme.

http://www.columbia -lyme.org/

Chronic neurotoxins are also something you may find interesting to research:

http://www.neuralth erapy.com/ NeurotoxinProtoc ol040406. pdf

These are only suggestions for you to research and do hope you find your

answers soon. If you're willing to travel as far as southwestern CT (about 90

mins

out of NYC) then I'd be happy to give you the contact info of my my LLMD

whose area of interest is in Lyme and its connection to " autoimmunity. " Just

send

me an email with the subject header, " Lyme Doc. " He may or may not be able to

help you, but if you're looking for a new LLMD, he's considered to be one of

the best in the US.

All the best to you in your seaches, Vicki.

Peace, Maz

[Guest guest]

So I dont really know if I should try to find another Lyme doc or if

I am barking up the wrong tree. It would be nice if it could be at

least ruled out. I never got the rash but I know not all people do.

* * * * *

I'm just a newbie and still working on understanding all

the various ramifications.

However, it seems to me that you would need to have the

full range of bacterial and microplama testing. It's important

to know which bacteria one is dealing with, in order to know which

antibiotic would work best.

In addition, have you been having regular tests of your Neutrophils

and Lymphocytes and Monocytes and Eosinophils ... absolute and

regular.

These tests over time will indicate if you are deaing with a virus,

bacteria, parasite or allergic reaction. If you have the tests, send

me the numbers for the last 3 reports, and I'll tell you what my

research indicates about them. Not that I'm an expert, but it will

give you something to discuss with your doctor.

It was the steady increase in Mr Perfects Neutriphil tests that we

pointed out to the Dr that caused her to order the full range of

bacteria and macrophile tests for Mr Perfect. Only one of which came

back positive. But one is all we needed, and it was 300% higher than

needed to be considered a positive infection needing acute treatment.

It was also one of the major bacteria associated with RA.

There are 4 basic bacteria that associate with Lyme to cause chronic

Lyme disease, if you test negative for all these, then it probably

isn't Lyme. (Your doctor should know which 4 bacteria these are)

There are two major bacteria associated with Multiple Sclerosis and

several minor ones, and four major ones for RA. I haven't checked

further than that, but if you get the full testing range using

individual tests, not group tests, you will be able to identify the

probable cause. (according to the microplasma report, you need to

stop taking antibiotics for 4 weeks prior to the testing, or you may

end up with false negatives)

One major reason that I've noticed for the tetracycline antibiotics

not to work for some people, is that they either aren't aware, or

haven't paid attention to the warning NOT to consume calcium, Iron,

magnesium or any other metal or mineral containing food, vitamin, or

supplement while taking it. No milk, cheese, butter, antacids or

other. It bonds with the tetracycline antibiotic and can make it

worthless. (doxy and mino are both of the tectracycline family)

Anyway, as I said, I'm just a newbie to all this and everything I

know is based on research and Mr Perfect. So, there may be lots that

I still don't understand yet. But I don't think anything I've

mentioned would hurt, and it might help.

Blessings