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

[Guest guest]

 

Thank you so much Maz.

 

I really wish it was Lyme becasue then its more treatable but if it was,

although I am not in high risk group being I rarely get out of the city and dont

have pets, but then woudlnt have the doxy worked by now I wonder? Have been

taking it since September. My god now I am itching like nuts, head the worst. If

not one thing then another, but usually its all at once. The local lyme

specialist wanted me to do these special cleanses for 1K a week! She wanted me

to do ten to start! She's nuts, no way can I drop 10K like that. 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.

From: momazmat@... <momazmat@...>

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

rheumatic

Date: Sunday, April 27, 2008, 11:57 AM

Hi Vicki,

>>>I sometimes cant even walk, but everynight the pain keeps me up, feels

like constant electrecutions that won't go away.<<<

Reading your post brought to mind an article entitled, " A Plague of Ignorance

Regarding The Ignorance of a Plague, " authored by Dr . I think

you might find it interesting in light of the symptoms you mention above. I've

cut an pasted the bit that seemed relevant to your question. Not saying Lyme is

your problem...it may or may not be...but just something that may help in

some way.

http://www.autoimmu nityresearch. org/lyme- disease/

" Another interesting symptom often noticed is an increased susceptibility to

electrostatic shock. This is likely due to the BLPs causing a change in the

electro-potential in our cells/nervous system. Some of these toxins are likely

sodium channel agonists and can change the electrical potential of our body.

Thus, the likelihood of electro-static shock. "

It's a very long article, but very worth the read, as there is much relevant

information to all our diseases. I've looked at many articles over the past

couple of years and this is one of the best and most informative to date, but

you'll need a good half hour to read and absorb.

Peace, Maz

[Guest guest]

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]

I have RA and am having nerve issues in my hands...Is anyone familiar with a

product for neuropathy by Wellness Support Network (WSN) called Nerve Support

Formula (NSF)? Supposed to help with more absorbable and bio-available B-12

(which protects nerve sheathing).

Thanks.

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]

I use Methylcobalamin (Vit B 12) by Life Extension for nerve support and it is

the most bioavailable, so I have read, on the market...they have a website... I

know if you are a member, we are, you get it substantially reduced...what I like

are the support advisors available for phone consults...re interactions,

etc...800 number....I like that...I have taken t heir B12 for years since my

initial testing showed some damage to the nerve sheaths.

Hope this helps, Debbie

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]

Thank you for your help, Debbie. Wishing you health...

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]

To both of you..

Have you tried ALA... Alpha Lipoic Acid? It is a supplement for diabetes

and nerve endings.

Also Gabapentin.. It is a prescription used for the same.

My husband had RLS and I put him on B6 (only 50 mgms) and pantothentic acid.

He sleeps like a babe.

Have you had your ferritin levels checked? Not the CBC. It's iron levels.

Most allopathic docs will tell you your blood levels are normal. You must

ask specifically for FERRITIN levels.

Cooky

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

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

Neuropathy -MAZ

I have RA and am having nerve issues in my hands...Is anyone familiar with a

product for neuropathy by Wellness Support Network (WSN) called Nerve

Support Formula (NSF)? Supposed to help with more absorbable and

bio-available B-12 (which protects nerve sheathing).

Thanks.

..

<http://geo./serv?s=97359714/grpId=93429/grpspId=1705061610/msgId=4

8016/stime=1210103709/nc1=5191949/nc2=5191951/nc3=3848642>

[Guest guest]

I have numbing of my hands at night, especially. Sometimes one of my feet goes

numb as well. I find that if I can keep my wrists and elbows straight at night,

I have much less numbing. I usually wake in the night and flex my hands until I

get feeling back. Most nights I will end up sleeping with a back rest behind

me...this gets circulation from my shoulders down my arms...and have less

numbing. The worst numbing happens when my hands are flexed at the wrists and if

I sleep and my hands end up near my face...cuts off circulation, starts

inflammation, causes swelling...and all this leads to the numbing. I have

discovered that two aspirin at bedtime reduces the swelling and numbness (past 2

weeks).

I started having " nerve issues " a few days ago. I had read that all the above

may lead to nerve damage (neuropathy), as the sheath around the nerves fails

from the inflammation (BTW, many diagnose the above as carpal tunnel...it may

be). I had done some ill-advised yard work with a power hedge trimmer...seemed

very light...but we have to be so careful. I have had shaking in my hands,

especially left. I cannot hold anything in my hand for over a few

seconds...causes severe shaking and cannot hold on to whatever it is. I have

gotten a little better with resting my arm from use...but have read that B12 is

recommended.

This is from the Medicinenet website:

Numbness or Tingling: When a joint swells, it can pinch the nerves of sensation

that pass next to it. If the swelling irritates the nerve, either because of the

inflammation or simply because of pressure, the nerve can send sensations of

pain, numbness, and/or tingling to the brain. This is called nerve entrapment.

Nerve entrapment most frequently occurs at the wrist (carpal tunnel syndrome)

and elbow (ulnar nerve entrapment). It is important to have nerve entrapment

treated early for best results. A rare form of nerve disease in patients with

rheumatoid arthritis that causes numbness and/or tingling is neuropathy.

Neuropathy is nerve damage that in persons with rheumatoid arthritis can result

from inflammation of blood vessels (vasculitis). Vasculitis is not common, but

it is very dangerous. Therefore, it is important to notify the doctor if

numbness and/or tingling occurs.

Thanks for your responses.

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]

Some drs. and patients recommend wrist splints for overnight. Did you say yours

is worse at night? I can only sleep in one position because of the RA and bad

pain to shoulders and hips if I try to lie on my side. I have read that this

" pools " the sinovial fluid (in the shoulders) and increases inflammation greatly

(why most folks experience greatest shoulder/arm pain at night). I also think

this is why we get the most numbing at night as well. The back rest does help in

this respect, as I am half sitting. I am so sorry about your pain. I hope that

you have a more sympathetic Rheumatologist than I did. Be careful about what the

drs. prescribe...I think they are guessing most of the time...I will let you

know if the NSF helps. I ordered some today. Here is the website:

http://www.realfoodnutrients.com/NEU/ProductInformation.htm Also the response

from Cookie has good advice that I will keep handy in case the NSF doesn't kick

in. I have had my anti-oxident levels tested and show good AO levels (not

needing ALA). Good iron levels (not Ferritin tested, though). I will research

pantothenic acid...

Thanks, Cookie.

mary

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]

I asked my rheumatologist to let me have physical and occupational therapy. This

has helped my hands greatly and also strengthened my upper body. I have also DM

and that weakened a lot of my muscles.. They showed me some ways to help with

the night numbness. I also doing upper body strength exercises.

Maybe you can ask your Dr. for that.

I wish you well.

Eva

Sue Emrick <semrick@...> wrote:

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]

Vicki, I think I mentioned this once before but I seriously think you should

look into different antibiotics. NOT Metronizol but Cipro, Zithromax or even

add them to the Minocin, there is even the old Keflex you might try. If

your physician cooperates I would try each one for 3 weeks. I know a lot of

people say you need to take them longer but I feel as long as yuo have been

doing this that you should see a difference in 3 weeks if it's going to

happen.

If your doc is not cooperative there are a few web sites that will send meds

without scripts and I have the names of a few if you need them..

Lots of empathy and sympathy .hugs,

cooky

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.,___