Nerve Damage

[Guest guest]

Hi ,

I am so sorry you are so emotional about this symptom, it must be so

hard for you when it keeps recurring. I too have nerve damage at C5, C6, &

C7 and am scheduled soon for another mri of the cervical spine to learn what

else is happening in there. I am not sure what you mean by shoulder blades

winging out. I don't think I have that. Surgery was recommended for me by

a neurosurgeon when only C-5 and 6 were Herniated, but I declined. My

shoulder and back does cause occasional pain, but it is a come and go sort

of thing, like a lot of other LD symptoms. I usually just lie on a heating

pad set at medium and that helps relieve the pain, along with all the pain

meds I take too. I am aware that the herniations that appear on MRI's are

continuing nerve damage, I did not know that they could regrow. That's good

to know, but if we continually harbor these spirochetes and they continue to

damage this cervical area, we really don't have too much of a chance in

permitting it to heal. I hate to be such a downer, you don't need that,

especially when you are so depressed about this. I guess we have no choice

but to try to eliminate the bacteria and that means lots of abx and IV meds

if possible, I would never recommend surgery and neither would my LLMD,

there are just no guarantees that it would do any good. Sorry that I have

not been much help here, I guess the only thing to do is to learn to live

with it and try to get rid of the Lyme spirochetes that are doing the

damage,

Much love,

Marta

>From: BBHMM@...

>

>Good morning my Friends,

>

> I have nerve damage in my spine at the C5, C6 and C7 level. This

started

>about 2 & 1/2 yrs ago. Because of this nerve damage my Lyme was finally

>discovered. Whenever I have a relapse the nerve gets attacked and causes

my

>shoulder blades to wing out ( this is one of the ways I know it has

happened

>again, plus the pain it causes). It takes a long time for this nerve to

>regrow, so I get really discouraged when I essentially have to start all

over

>again. Has anyone else had this happen? Does anyone else have the problem

of

>a nerve being repeatedly attacked when ever they have a relapse ? I worry

>that with each episode the chances of recovery of the nerve become slimer

and

>slimer. My neurologist has said that they can go in and surgically tie down

>the shoulder blade, but that I would lose some mobility, so I am not sure I

>like this alternative, but after having this continually happen it is

>sounding more appealing. I don't know if anyone has any answer's, but it is

>starting to wear on me emotionally. Even the sunshine can't seem to dry the

>tears lately. I love you all so much for the love and support that you so

>freely share with us all. Thank you for letting me wipe some tears on your

>shoulders. Have a nice day !

>

>Your Lyme Friend,

> in VA

[Guest guest]

Hi ,

I am so sorry you are so emotional about this symptom, it must be so

hard for you when it keeps recurring. I too have nerve damage at C5, C6, &

C7 and am scheduled soon for another mri of the cervical spine to learn what

else is happening in there. I am not sure what you mean by shoulder blades

winging out. I don't think I have that. Surgery was recommended for me by

a neurosurgeon when only C-5 and 6 were Herniated, but I declined. My

shoulder and back does cause occasional pain, but it is a come and go sort

of thing, like a lot of other LD symptoms. I usually just lie on a heating

pad set at medium and that helps relieve the pain, along with all the pain

meds I take too. I am aware that the herniations that appear on MRI's are

continuing nerve damage, I did not know that they could regrow. That's good

to know, but if we continually harbor these spirochetes and they continue to

damage this cervical area, we really don't have too much of a chance in

permitting it to heal. I hate to be such a downer, you don't need that,

especially when you are so depressed about this. I guess we have no choice

but to try to eliminate the bacteria and that means lots of abx and IV meds

if possible, I would never recommend surgery and neither would my LLMD,

there are just no guarantees that it would do any good. Sorry that I have

not been much help here, I guess the only thing to do is to learn to live

with it and try to get rid of the Lyme spirochetes that are doing the

damage,

Much love,

Marta

>From: BBHMM@...

>

>Good morning my Friends,

>

> I have nerve damage in my spine at the C5, C6 and C7 level. This

started

>about 2 & 1/2 yrs ago. Because of this nerve damage my Lyme was finally

>discovered. Whenever I have a relapse the nerve gets attacked and causes

my

>shoulder blades to wing out ( this is one of the ways I know it has

happened

>again, plus the pain it causes). It takes a long time for this nerve to

>regrow, so I get really discouraged when I essentially have to start all

over

>again. Has anyone else had this happen? Does anyone else have the problem

of

>a nerve being repeatedly attacked when ever they have a relapse ? I worry

>that with each episode the chances of recovery of the nerve become slimer

and

>slimer. My neurologist has said that they can go in and surgically tie down

>the shoulder blade, but that I would lose some mobility, so I am not sure I

>like this alternative, but after having this continually happen it is

>sounding more appealing. I don't know if anyone has any answer's, but it is

>starting to wear on me emotionally. Even the sunshine can't seem to dry the

>tears lately. I love you all so much for the love and support that you so

>freely share with us all. Thank you for letting me wipe some tears on your

>shoulders. Have a nice day !

>

>Your Lyme Friend,

> in VA

[Guest guest]

Well, I just got back from LLMD's, who is a nuerologist and found out that

my C-5,6 +7 damage is much worse than 2 months ago. Now I have numbness

under arms down to pinky fingers, legs get numb. I have carpel tunnel in

left hand, 3 pinched nerves in left arm. He did some test involving electric

shock to those areas. Now I have a referral from him to a neurosurgeon, I am

not looking forward to having any type of surgery but I guess its to late

now! No more riding, mowing (not that I have in the last 7 months) I have

to be carefull how I get up etc. In case Ya'll dont know already, HAVING

LYME SUCKS!!!! big time! well I gotta go lay down, been driving since

6:30am and am about to fall out. Take care and talk to ya'll later! Pepi

[Guest guest]

Pepi,

I don't know what to say, but that I'm so sorry you are having these

problems. I know its scary and agree with 1000% Lyme SUCKS! Hang in there

and keeps us updated. Hope you get some sleep. Vicki, Md

>>From: " Pepi " <rod@...>

>>

>>Well, I just got back from LLMD's, who is a nuerologist and found out that

>>my C-5,6 +7 damage is much worse than 2 months ago. In case Ya'll dont

know already, HAVING

>>LYME SUCKS!!!! big time! well I gotta go lay down, been driving since

>>6:30am and am about to fall out. Take care and talk to ya'll later!

>Pepi

[Guest guest]

Oh Pepi,

I am so sorry, I have another referral for another cervical MRI, I just

haven't gotten around to making the appt. I have the exact herniations at

the same disks and the same symptoms, constant numbness in my hands, yet I

can type OK, holding a pen and writing is extremely difficult. I have had

the emg and nerve conduction studies too and have carpal tunnel in both

hands. I have numbness in my left calf, but not my right leg so much. Yes,

Lyme sucks big time. I hope you find a good neuro surgeon, and after you

see him go for another opinion. Since these chetes are constantly causing

this damage, I fear that surgery, at least in my case will be useless.

Unless the herniations are pressing on our spinal cords. It is scary.

Please keep me posted on what you find out, and I will tell you what shows

up on my next MRI. Try to get some sleep, you must be exhausted, I am too,

but have been awake since Midnight, want to lie down, but too damn restless,

sure hope it passes quick.

Gentle Hugs,

Marta

>From: " Pepi " <rod@...>

>

>Well, I just got back from LLMD's, who is a nuerologist and found out that

>my C-5,6 +7 damage is much worse than 2 months ago. Now I have numbness

>under arms down to pinky fingers, legs get numb. I have carpel tunnel in

>left hand, 3 pinched nerves in left arm. He did some test involving

electric

>shock to those areas. Now I have a referral from him to a neurosurgeon, I

am

>not looking forward to having any type of surgery but I guess its to late

>now! No more riding, mowing (not that I have in the last 7 months) I have

>to be carefull how I get up etc. In case Ya'll dont know already, HAVING

>LYME SUCKS!!!! big time! well I gotta go lay down, been driving since

>6:30am and am about to fall out. Take care and talk to ya'll later!

Pepi

>

>

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[Guest guest]

Does that just happen over time?? Anything I can do to help the repair?

My back is killing me...........have been using lidocaine patches..........

Conniek nwnj

Leave no stone unturned.......and ask questions!

[Guest guest]

What would the B-12 do for the damaged nerve?? Help in Repair? Anything

else I should take specifically for nerve repair?

Conniek nwnj

Leave no stone unturned.......and ask questions!

[Guest guest]

----- Original Message -----

From: " conniek " <conniek@...>

> Does that just happen over time?? Anything I can do to help the repair?

> My back is killing me...........have been using lidocaine

patches..........

> Conniek nwnj

> Leave no stone unturned.......and ask questions!

When I was diagnosed as having CFS and Fibro years ago, I started B12

(cyanocobalamin) injections. This is supposed to protect the nerves. Have no

idea how sound this is.. but after 8 years of not being treated, I don't

seem to have any nerve damage... maybe this treatment prevented it?

Methylcobalamin is generally a better choice now I'm told but it is more

expensive by far. Might be worth looking into.

I also use lidocaine patches from time to time... my pain seems to change in

severity depending on the herxheimers now. During the last severe bout of

herxing it was VERY severe. Is back pain necessarily nerve damage?

Jen

[Guest guest]

Hi Jen,

<<<<<<<<. During the last severe bout of

herxing it was VERY severe. Is back pain necessarily nerve damage?>>>>>>>>>

Seems to be in my case..................in my testing of the nerves, some of

the nerves got absolutely no response.

My neurologist, said in August, I had moderate damage, now she is calling it

severe damage. I have been flat on my back since Saturday.

Don't know for sure, if this is a combination of lyme damage and something

I'm doing.........or what.......we are in the investigation process now.

I am a PE teacher, and have started a new class using dynabands, yoga, etc.

Connie nwnj

Leave no stone unturned.......and ask questions!

[Guest guest]

----- Original Message -----

From: " conniek " <conniek@...>

> Seems to be in my case..................in my testing of the nerves, some

of

> the nerves got absolutely no response.

> My neurologist, said in August, I had moderate damage, now she is calling

it

> severe damage. I have been flat on my back since Saturday.

> Don't know for sure, if this is a combination of lyme damage and

something

> I'm doing.........or what.......we are in the investigation process now.

> I am a PE teacher, and have started a new class using dynabands, yoga,

etc.

>

> Connie nwnj

I hope you find out what's what and that it gets better Connie! Sounds

miserable.

Jen

[Guest guest]

In a message dated 01/11/2002 12:14:12 AM Eastern Standard Time,

rod@... writes:

> That sounds like a topic that would interest me too since I have nerve

> damage

> > from my lme, Dr. D said iitt's embedded in my nerve tisse

>

> I think that the nerves may eventual remyelinate. Mine seem to be, hope

> so

> LOL

>

What do you mean eventual remyleninate???

YYYY Jody YYYY

To handle yourself, use your head;

to handle others, use your heart.

o <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> <A

HREF= " http://www.picturetrail.com/gallery/view?username=tarabencaitysmom " >Jody's

Photo Albums</A>o

H

[Guest guest]

In a message dated 01/11/2002 9:53:52 PM Eastern Standard Time,

conniek@... writes:

>

> Does that just happen over time?? Anything I can do to help the repair?

> My back is killing me...........have been using lidocaine patches..........

>

How do those work? they want to wean me off the percoset because they are

addicting BUT they are the only thing tht takes care of these headaches and

neck pain......the pharmacist suggested that......

YYYY Jody YYYY

To handle yourself, use your head;

to handle others, use your heart.

o <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> <A

HREF= " http://www.picturetrail.com/gallery/view?username=tarabencaitysmom " >Jody's

Photo Albums</A>o

H

[Guest guest]

Hi Jody:

I am familiar with de/remylenation from MS. In MS and Lyme the

protective coating around the newves called Myelin is attacked and so to

speak eaten away. With MS because the immune system continually attacks

this protective sheath its attempt to " grow back " usually is not

successful, but in Lyme this " growing back " can occur when the Lyme is not

attacking. this is called remyelination.

(Any one else correct me if you know of a better explaination)

-GLEN

At 01:09 AM 2/1/2002 -0500, you wrote:

>In a message dated 01/11/2002 12:14:12 AM Eastern Standard Time,

>rod@... writes:

>

>

> > That sounds like a topic that would interest me too since I have nerve

> > damage

> > > from my lme, Dr. D said iitt's embedded in my nerve tisse

> >

> > I think that the nerves may eventual remyelinate. Mine seem to be, hope

> > so

> > LOL

> >

>

>What do you mean eventual remyleninate???

>YYYY Jody YYYY

>To handle yourself, use your head;

> to handle others, use your heart.

>o <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff &

>Jody's Family</A> <A

>HREF= " http://www.picturetrail.com/gallery/view?username=tarabencaitysmom " >Jody'\

s

>Photo Albums</A>o

>H

[Guest guest]

Have you asked or mentioned to your doctor about having an EMG done to see if

there is nerve damage, if so it will show the extent of it. I think that would

be the first step for that part of your pain problem? I'm guessing here, maybe

there's something else that happens first, if so someone else will speak up and

let us both know, but I'd say ask about having an EMG done.

Connie

Nerve damage

> I have varying degrees of numbness and sensation loss in my legs, and

> an almost complete loss of sensation in my penis . . . I am unable to

> reach orgasm. I realize that this is probably indicative of nerve

> damage, so my question is, is this something that can be corrected

> surgically or might resolve itself over time? I am seeking answers,

> even if they are not what I want to hear . . . the neuro I was seeing

> has pretty much given up on me, that's why I may be taking a trip to

> UCLA soon. I would like to know what caused my leg and groin

> tingling and subsequent numbness. Any info people can provide would

> be greatly appreciated.

>

> -Kenny

>

>

>

>

[Guest guest]

> I have varying degrees of numbness and sensation loss in my legs,

and

> an almost complete loss of sensation in my penis . . . I am unable

to

> reach orgasm. I realize that this is probably indicative of nerve

> damage, so my question is, is this something that can be corrected

> surgically or might resolve itself over time? I am seeking

answers,

> even if they are not what I want to hear . . . the neuro I was

seeing

> has pretty much given up on me, that's why I may be taking a trip

to

> UCLA soon. I would like to know what caused my leg and groin

> tingling and subsequent numbness. Any info people can provide

would

> be greatly appreciated.

>

> -Kenny

[Guest guest]

Vern,

Thanks for the post, glad to know I'm not alone. The neuro I've been

seeing is supposed to be top notch, but considering my recent suicide

attempts and subsequent hospitalization, followed by a (mis)diagnosis

of somatization disorder, my neuro has been kind of stand-offish.

Basically he has said that in the films he has not isolated anything

surgical, so I may do well in seeking another opinion from UCLA or

USC. He did want another cervical MRI done, this time in contrast.

I haven't had a lumbar MRI done. I've been told that if you have

nerve damage that it's permanent and nothing can be done about it. I

guess that sucks for me and my future sex life, since I can't feel a

frickin' thing down there anymore. Anyway, keep me posted on your

situation, and I'll let you know how things go at UCLA, assuming I am

able to go that route as my neuro has suggested.

> > I have varying degrees of numbness and sensation loss in my legs,

> and

> > an almost complete loss of sensation in my penis . . . I am

unable

> to

> > reach orgasm. I realize that this is probably indicative of

nerve

> > damage, so my question is, is this something that can be

corrected

> > surgically or might resolve itself over time? I am seeking

> answers,

> > even if they are not what I want to hear . . . the neuro I was

> seeing

> > has pretty much given up on me, that's why I may be taking a trip

> to

> > UCLA soon. I would like to know what caused my leg and groin

> > tingling and subsequent numbness. Any info people can provide

> would

> > be greatly appreciated.

> >

> > -Kenny

[Guest guest]

> has anyone ever gotten nerve damage in their thigh

> from injecting humira or enbrel? > Joy

Hi Joy,

I had to stop taking Enbrel about three months ago because it argued

quite severely with my nervous system. I had increased pain in some

places and loss of control in several others. It also effected my

cognitive abilties. Your problems may not be related to medication at

all. If you have had any arthritis in your spine (particularly your

sacrum/sacro-illiac joint), then there is a chance that your nerves in

your leg have been effected by that. The problem would be physical

rather than chemical. Good luck with your neurologist. I hope that he

or she finds your problem to be relatively minor.

Brent

[Guest guest]

The times I injected Enbrel, into the upper thigh, I did have some

strange feelings of nerves running down the back of my hip/leg.

Would that be what you are mentioning?

I've used the abdomen lately and have no repercussions there.

This is only my fifth injection.....

Still learning!

Hiker

BTW, I have found some heavy latex, type gloves that really help the

hands - I speak of this for the lady rowing - I feel sure this would

make a difference.

>

> > has anyone ever gotten nerve damage in their thigh

> > from injecting humira or enbrel? > Joy

>

> Hi Joy,

[Guest guest]

No Nerve damage here from Humira or Enbrel. That sounds more like Neuropathy.

Some of us with PsA get this. If you have nerve damage or numbing,

talk to your rheumy about trying Cymbalta. It REALLY helps! It helps on the

pain and the depression as well.

LeAnn & Furbrats Blossom & Meriko

Born Deaf-Blind due to Congenital Rubella Syndrome (CRS), dx'ed with

FMS/CMP, Psoriasis, Psoriatic Arthritis (PsA), Osteoarthritis (OA), Major

Depression, Schuermanns Kyphosis, Glaucoma, GERD, Endometrosis, IBS,

PVC--Premature Ventricular Contractions and Narcolepsy

Oklahoma City, OK

" There is no psychiatrist in the world like a puppy licking your face. " Ben

[Guest guest]

I ALSO HAD THE OXALIPLATIN IN MY CHEMO. CAUSED SEVERE DAMAGE TO HANDS AND FEET

ALSO. I HAVE USED ALA, VITAMIN B AND NEUROTIN WITH NO HELP. DOES ANYONE KNOW

OF ANY OTHER WAYS TO TRY AND TURN THE NERVE DAMAGE AROUND>>

AL

________________________________

From: jrrjim <jim.mcelroy10@...>

One of the standard chemotherapies for colon cancer is oxaliplatin, a

plantinum containing compound. This chemotherapy produced permanent

and extensive nerve damage in my hands and feet, which I will

probably never recover from. There are days when I wonder if it is

worth trying to continue fighting the cancer due to the extreme

discomfort of my neuropathy.

[Guest guest]

I have the same sensation but I found that ALA and B6 help. I think the

Oxali also made my tinnitus worse. Exercise, if your neuropathy isn't too

severe, also helps

From: jrrjim

One of the standard chemotherapies for colon cancer is oxaliplatin, a

plantinum containing compound. This chemotherapy produced permanent

and extensive nerve damage in my hands and feet, which I will

probably never recover from. There are days when I wonder if it is

worth trying to continue fighting the cancer due to the extreme

discomfort of my neuropathy.

[Guest guest]

Have you tried a product called Benfotamine? You buy it online. It is

specifically for neuropathy - several BVitamins and other stuff. I have had

success.

R

[Guest guest]

I did not use Avastin at the time because my blood pressure was not in the

parameters for the study going on for Avastin.

Al

____________ ___

From: Gubi <gubisarazahav (DOT) net.il>

Sent: Wednesday, December 31, 2008 10:41:56 PM

Hi Al,

May I ask weather you also used Avastin concurrently with the oxaliplatin? what

dosage of ALA have you used?

Gubi

____________ ___

From: Al Hurt

I ALSO HAD THE OXALIPLATIN IN MY CHEMO. CAUSED SEVERE DAMAGE TO HANDS AND FEET

ALSO. I HAVE USED ALA, VITAMIN B AND NEUROTIN WITH NO HELP. DOES ANYONE KNOW OF

ANY OTHER WAYS TO TRY AND TURN THE NERVE DAMAGE AROUND

[Guest guest]

I was using about 600 MG of ALA a day.

Al

From: Gubi <gubisara@...>

Hi Al,

May I ask weather you also used Avastin concurrently with the oxaliplatin? what

dosage of ALA have you used?

[Guest guest]

Successful auricular neural therapy in oxaliplatin-induced sensory

neuropathy

Sub-category: Lower Gastrointestinal Cancer

Category: Gastrointestinal Cancer

Meeting: 2003 ASCO Annual Meeting

Abstract No: 1454

Citation: Proc Am Soc Clin Oncol 22: 2003 (abstr 1454)

Author(s): J. Preiss, O. Meisel; Caritas-Clinic St. Theresia,

Saarbruecken, Germany

Abstract: Acute and chronic sensory neuropathy (SN) is the most

common and dose limiting toxicity in chemotherapy of advanced

colorectal cancer with Oxaliplatin. It leads to a substantial

reduction in quality of life, especially in patients (P) with

prolonged survival. Treatments with antiepileptic drugs or B-vitamins

are useless. A prophylactic infusion with magnesium glucuronate and

calcium chloride can partially prevent SN (Proc. ASCO 2002: #624). We

tried out another approach with neural therapy (NT). From 08/02 to

11/02 22 P* with acute or chronic SN (WHO Grad 1-3) during or after

Oxaliplatin therapy (cumulative dose 625, range 350 to 1100 mg/sqm)

received NT. 0.5% procaine was injected SQ auricular. Acupuncture

points were according to NAGER: projections of the paravertebral

sympathetic ganglion of cervical and lumbar spine** and projections

of the skeleton of hands and feet (if necessary forearms and lower

legs). In 20/22 cases (90%) SN could be reduced to grade 1 or 0.

Patients with acute SN needed 1 or 2 settings. In chronic NS most of

the time 4 to 6 settings were necessary. Successful treatment was

paralleled by an increase of blood supply in hands and feet, measured

with a high sensitive infrared camera. Nevertheless NT in SN due to

Vincaalkaloids was ineffective although increase of blood supply was

seen in the same way. We thus suggest that the increased blood stream

is not the underlying reason for the effect of NT in SN due to

Oxaliplatin. With the study still being under way, we will report the

results of NT in more than 50 P with Oxaliplatin-induced SN. Already

it seems to be clear that NT is an efficient, cost- and timesaving

alternative with few side effects. * P with known Procaine allergy or

risk of tumor bleeding were excluded ** In P in remission without

therapy the acupuncture points corresponding to primary or secondary

tumors should be excluded. Increase of blood supply may favor tumor

enhancement