shingles

[Guest guest]

Do you feel that shingles affected your CMT? Thank you for the reply.

[Guest guest]

Thank you Alice. I really see how it may affect the nerve tips in a

non-positive way. As you will read there are several ideas on it's affect on

the nerves of CMT patient.

Jeanann

[Guest guest]

,

I'm with you on that I suffered for a long time with shingles!

My legs are at last clearing up.......boy was that painful.

Geri

[Guest guest]

Oh gosh.I thought I was going to die too.....I was so sick! They say you cant

get shingles but one time! Wrong!

Geri

Alice,

So sorry to hear about that. Although I've never had testing or anything I

know I had something going on ( wounds wouldn't heal, I was sick all the

time and swear I was dying. All because I listened to a dr. ), until I did

all my own research and mended myself through nutrition. Yes ,and I believe

lots of stuff is going to get a lot of people because some peoples body will

warn them and others it will be too late.

In a message dated 4/20/2009 11:32:17 A.M. Central Daylight Time,

alvozzo@... writes:

Hello, All.

I would highly recommend getting several medical opinions and doing a

lot of your own research before getting any kind of vaccination,

especially if you have an existing neuropathy such as CMT.

I got the flu shot for the first (and last) time in 2006, and I had a

severe neurological reaction. At the time I was unaware of having CMT.

I have never been the same since. I believe it greatly exacerbated my

existing neuropathy, and might have even accelerated its course.

I can also attest to coexisting autoimmune diseases. I just tested

borderline positive for Lupus.

Hope this information is helpful.

Best regards,

Alice

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[Guest guest]

Both my kids had chicken pox twice. My 29 yr old son, CMTer, at age 12 and

again at age 17. My 14 yr old, not a CMTer, at age 2 & 1/2 and age 9. I

didn't notice any progression of CMT with my son or any CMT symptoms with my

daughter.My mother exposed both my sister and I as tots ( that's what they did

then )and we both had normal developemental mile stones. We got symptoms

at age 6 ( me ) and her ( 4 ). I believe ( always will ) that nutrition is

better than vaccines and any toxins. If your immune system is working, if

anything comes your way, you can fight it and chances are you're gonna have

it licked before it gets too far. My sister and I never got chicken pox

again like they do now. I've been around people with shingles too and never got

it. I use myself for a guinea pig al the time. Nutrition wins every time.

[Guest guest]

Again, not directly related to only shingles ....

Chicken Pox, and Shingles, are both caused by the same virus.

If your immune system is out-of-balance, that can open the door for the virus to

charge on through.

One of the unfortunate, permanent, symptoms/results of Shingles, is neurological

pain.

I'm not sure what these nerves look like under the microscope, however, i.e.,

whether they bear any resemblance with CMT.

As an infant/toddler, I contracted a severe case of Chicken Pox - head to toe.

Shortly thereafter, the symptoms of 'CMT' began to manifest.

This is NOT to say it's a cause-effect relationship. Just a curious observation.

Does anyone else have a 'curious' connection between Chicken Pox/Shingles, and

CMT?

>

> Do you feel that shingles affected your CMT? Thank you for the reply.

>

>

[Guest guest]

I had shingles last year, my sister (also a CMTer) had them in the same place,

left scalp, the year before. We both get " flare ups " occasionally where you feel

that tingling parasthesia in the same spot but not as bad as when we had a full

blown case. That really hurt. My hair hurt. I felt like I had an axe in the side

of my head and when they gave me some percoset to help, I felt like throwing up

-- and like I had an axe in the side of my head.

Shingles is caused by Herpes Zoster Virus which is the same thing that causes

chicken pox. The virus never leaves but gets sequestered in the cell bodies of

the dorsal root ganglia, the nerves that run from your spine out to the

periphery. Our immune systems generally keep them in check and suppress the

virus that coexists with us for life. Sometimes it escapes and it is most

commonly seen in immunosuppressed people and the elderly (physiological

immunosuppression), though it is exceedingly common in the normal healthy

individual. We all know there are numerous things that depress our immunity like

stress, lack of sleep, chronic pain --another form of stress, etc. It is

probably just enough to let the virus out.

Since CMT neuropathy is a myelin problem, actually formed by another cell living

next to the neuron that makes the myelin sheath, called the oligodendricite, a

dormant virus in the neuron being reactivated is not likely to be related. Are

you more susceptible if stressed and/or in chronic pain? sure. So, in reality,

everything is inter-related, but CMT in and of itself does not cause or

exacerbate shingles.

You all remember the big deal about silicone implants causing autoimmune

diseases? Well, turns out, after all the hoopla died down and silicone implants

were banned, that the number of women who came down with autoimmune disease

after an implant was statistically the same as those women who had an autoimmune

disease and didn't have implants. It is just a fairly common disorder in middle

aged white women and those who probably would have gotten it anyway blamed it on

the implants. Thinking about these things is good but you have to be careful

about making leaps without good substantiation behind them.

The burning question I have and have not had adequately answered is: Is there

any value in getting the vaccine once you've had a case of shingles? Would it

prevent recurrances? Hated having an axe in my head.

Holli

[Guest guest]

To answer your question regarding any connection between shingles and chicken

pox;

I had my case of shingles long before I knew I had CMT, I was pregnant with my

first child (she has just recently celebrated her 30th birthday). This of

course made the ordeal even more difficult (the ordeal of shingles not

pregnancy) as I could not take anything for the pain. The shingles actually

circled my much lager than usual stomach!

I was sent to a clinic in Toronto to see a specialist and one of the first

questions they asked, was if I agree to have a photo of my shingles (along with

my protruding baby belly) taken for a medical journal. At least it didn't show

my face..lol...but I guess at least my stomach found it's way into the medical

journals!

Both my second and third child contracted chicken pox...at a very inconvenient

time...we were on our way to visit Disneyworld...I fully expected my oldest

daughter to also get them but she didn't and our family doctor said that because

I had the shingles whilst pregnant with her she may never get them (almost like

she had been vaccinated). As I mentioned she is now 30 and has still never had

chicken pox. Sorry for the long story your post just reminded me of this.

Warm wishes,

[Guest guest]

Elaina,

I hate to contradict, but I think you got shingles all on your own. Since it is

a reactivation of your previous case of chicken pox (which tracks along the

dermatome supplied by the particular nerve body the reactivated virus had been

living in), you could not have picked it up from your father. Just an unhappy

coincidence.

Shingles is not contagious as shingles BUT (!!!) be very cautious of exposing

someone who has never had chicken pox to shingles, especially adults.

Shingles can be transmitted to others as a new 1st time chicken pox, which in

adults can be serious, even deadly.

But if you've had it (CP) before, you can be comfortable helping out a family

member who has shingles.

Once the crusts have dried and fallen off you are safe for the general public

again. Another reason you probably didn't get them from him as his was past the

infectious stage. ---and I feel your pain too!

Holli

> I had shingles years ago. Very painful! I caught them from my father. He had

> them on his head and face, poor man, and had given him a hug on Thanksgiving

> day. He had no sign of them left except a little scar here and there. But it

> was like a week later and I had the beginnings of this rash on my back.

> Within a day I was home with shingles. Gold bond powder helps alot. All you

can

> do is wait it out. The thing I remember most is the nerve endings hurting for

> months afterwards. I feel your pain.

> Elaina/NY

>

>

>

[Guest guest]

Give me some tips as to how you eat?Nutrition always interested me,my family

thinks I'm nuts perhaps, I am.

I know when I doctored allot I got very , I told the doc I feel like I'm toxic

and I feel like I'm dieing I said....

Another thing that sounds like I'm a nut case.

Now that's all one hears is how toxic meds are!Many docs have given up on me

and I have yet to find one that I trust, they have made me very sick...don't

even look into cmt and have given me meds that I shouldn't have had.

I hope one day I will find a doc that cares!

Geri

Minnesota

Both my kids had chicken pox twice. My 29 yr old son, CMTer, at age 12 and

again at age 17. My 14 yr old, not a CMTer, at age 2 & 1/2 and age 9. I

didn't notice any progression of CMT with my son or any CMT symptoms with my

daughter.My mother exposed both my sister and I as tots ( that's what they did

then )and we both had normal developemental mile stones. We got symptoms

at age 6 ( me ) and her ( 4 ). I believe ( always will ) that nutrition is

better than vaccines and any toxins. If your immune system is working, if

anything comes your way, you can fight it and chances are you're gonna have

it licked before it gets too far. My sister and I never got chicken pox

again like they do now. I've been around people with shingles too and never

got

it. I use myself for a guinea pig al the time. Nutrition wins every time.

[Guest guest]

Geri,

You are not nuts. You just listened to the dr because you believed in him.

I am very fortunate to have had a grandma who knew a lot because she was a

nurse. Plus I joined weight watchers in my early 20's so I learned a lot.

When my son was little I took him to the dr for every tiny sniffle and grandma

always came over to see what meds they put him on. She'd tell me which ones not

to give him. She always said food is the best medicine. Plus I had experience

watching my aunt and mom die after numerous health issues I know were caused by

meds, only I only realised it after having my own couple little episodes with

meds and by reading things and thinking back to moms and aunts problems and

things my grarndma would say. That was enough conforrmaton for me.

And really medicine is really for sick or dying people. It has

its place but it isn't for killing. If you go to _www.mypyramid.gov_

(http://www.mypyramid.gov) it will show you how much of each food group you

should have. It goes by your height and weight. Keep in mind though, they don't

mention that the food you consume needs to be organic in order for you to reach

your nutritional needs. It didn't when I went there. anyhow. It could have

changed but I doubt it.

I buy most of my food organic most of the time now and for supplements I take

the turmeric, organic life vitamins liquid,

minerals and vitamins E and C. I take the bee pollen when the food supply is low

at the end of the month because of the amino acid profile.I also buy real salt

and use it to take a mineral bath or soak my feet. Makes my muscles and joints

feel fantastic. And I have a water filter on my kitchen faucet and soon to have

one for the shower.

[Non-text portions of this message have been removed]

[Guest guest]

Shingles can be a horrible disease. The vaccine is safe. While it isn't

completely effective, if you do get shingles, your case will be less severe. As

people with and without CMT age, their immune systems get weaker and shingles

can rear its ugly head. If you are over 60, follow Dr. 's advice and get

the shot. Relying on nutrition is not as effective.

Both my husband, who has CMT, and I had the vaccine as soon as it was available

because we remembered how very miserable my mother was when she had shingles;

neither of us had any reaction from the shot.

Elinor

[Guest guest]

I got Chicken pox for the first time when I was 21. Head to toe, inside every

orface of my body, yes EVERY (going to the bathroom was really not fun). I had

only had orthopedic problems (bursitis in my hip, scoliosis, ect.) before then

and after having chicken pox I started having nerve pain in my feet and loss of

sensation and loss or reflexes. Could be a co-incident but maybe not.

[Guest guest]

Hi:

If you are worried about shingles, there is a vaccine for it. Just ask your Dr.

Victor

[Guest guest]

Chicken Pox is not always as benign as we like to think.

My daughter had chicken pox at 9. Her case was quite severe and she was

hospitalized. She was passing out, and had passed out several times before we,

her parents, found out. We found out shortly after we found a puddle of urine

on the bathroom floor and no one could explain it. We asked her to get a towel

to clean it up, and she passed out. So we had our answer to how the mysterious

puddle of urine magically appeared. Called the DR and he had us take her to the

hospital, where she was quarantined. Dr said that her throat, nose, and

esophagus were riddled with chicken pox (curiously she did not complain of pain

about that) and that he thought that she was passing out and exhibiting " bizarre

behavior " because the C-pox had broken out on her brain. Oddly, her skin was not

badly broken out with chicken pox, which led us to believe she had a mild case.

This was all quite serious, but my husband and I laughed to ourselves about the

'bizarre behavior' comment - my daughter invented the term " Drama Queen " and

sometimes her behavior was 'out there'. At 34, she still proudly wears the

" Drama Queen " crown, but her behavior evolved as she matured. Thank goodness.

With her c-pox history, I pray she never gets shingles.

[Guest guest]

dab shingles with white vinegar as it will help with the pain . Do not use on

broken areas of skin . .

cathy from ma

[Guest guest]

Kate,

I had Shingles back about 18 years ago. I was having Fevers of

Unknown origin and I had chronic Hives of unknown origin( Its autimmune

I found out) Still suffer from bouts of Hives. I then Had Shingles on

my back, and still have numbness their. So, Could you get it again? I

had Imuran and some other stuff. Mine was slightly painful at the time

and My fevers were far worse. I had psoriasis patches at the time and

wonder if that was my first bout with the onset of PSA. My Mom has

shingles and it was painful for her. I suffer from Cysts. Those are

painful.

[Guest guest]

Hi Kathy,

Have you seen your rheumy Or Dermatologist? I am asking because I have

experienced similar and it was NOT shingles, but Psoriasis.

I have had eruptions in my mouth that are canker like and was told it was

psoriasis or manifestation thereof, Also what you describe on your feet also

sounds like Psoriasis. And Yes both are painful.

Also, I may be wrong, but I was under the impression that PA or P do NOT cause

make me more suseptable to infections and or colds/flu, BUT rather it is the

DRUGS like MTX, Enbrel, etc than CAN cuse us to be more suseptable. These drugs

supress our immune systems, NOT the disease.

IF (check with your rheumatolgist) what I have said is true, and I believe it to

be. Then perhaps you might want to be on MTX, Enbrel, or something otherthan

Humira to actually try to reduce and clear the symptoms you are experiencing. Is

the Humira working for you otherwise? Relieving joint pain?

I am on MTX and while it works wonderfully in relieving my joint pain, I do

still experience skin problems with P. Topicals keep it at bay, but stress or

injury tends to set off a skin flare for me.

Stay Well,

[Guest guest]

Hi Katzme

  I am currently taking Humira, I am considering stopping it because I do not

feel any better after 2-1/2 months on it. Since I have started taking it, I have

broken out with what I believe is acne all over my face, chest, shoulders and

upper back; some of them look like blisters but do not hurt any more than a

pimple would. I get sores in my mouth even without the Humira. I am sorry you

are having such a bad time and I hope you find something that works for you

without the horrible side effects.

Lori in AZ

[Guest guest]

Avoid foods high in arginine if you are battling shingles.

http://nutritiondata.self.com/foods-000089000000000000000.html

No sea lion liver for you! That is the top on the list.

Pam

>

>

> I've been away, waiting to get a cavitate out. Might have shingles, doc's not

for sure, but gave Valtrex. I know some of our kids took it.

>

> L-Lysine & what else?

>

> I'm concerned about the wax, dyes.  I get swelling anaphylactic reaction from

from beeswax. I have MCS since we lived in a place w mold.

>

> http://www.rxlist.com/valtrex-drug.htm

>

>

>

> valacyclovir hydrochloride equivalent to 500 mg or 1 gram valacyclovir,

>

> inactive ingred: carnauba wax, colloidal silicon dioxide, crospovidone,

> FD & C Blue No. 2 Lake, hypromellose, magnesium stearate,

> microcrystalline cellulose, polyethylene glycol, polysorbate 80,

> povidone, and titanium dioxide. caplets are printed with edible white

> ink.

>

>

>

> Thanks, Kathy

>

>

>

>

[Guest guest]

> I've been away, waiting to get a cavitate out. Might have shingles, doc's not

for sure, but gave Valtrex. I know some of our kids took it.

> L-Lysine & what else?

Take lysine, avoid arginine.

Die off tends to increase yeast, so watch for that.

Dana

[Guest guest]

And of course I could be mistaken about the kind of shot she gave me,

LOL. But whatever she did certainly did work! And actually it was more

than three days before I got in, so I was really lucky that I had such

an easy time of it.

My RA symptoms started in January of March of 2001, and it was in

March that I got shingles. And, oh yes, it was a steroid shot, because

now I remember how good it made my joints feel--- for two or three

days. After that, the RA seemed to settle in my shoulders and hands,

whereas before it went from joint to joint. So I did get shingles when

my immune system was busy attacking my joints.

I have heard of people having the disease in the eye and losing vision

as a result.

Sue

On Aug 12, 2010, at 5:14 PM, Deb wrote:

> Sue

>

> I know.just read up on the vaccine.I have a friend who said she had

> shingles, took the vaccine and has never had another outbreak..huh?

> That

> didn't make sense. The funny thing is that we are the ones getting

> the

> shingles. I didn't seek treatment till a month later.I thought that

> it was

> poison ivy..I went to the ER because my eye swelled up (I had

> cellulitis)

> and at that point I thought oh no, I have this thing in my eye...

>

> If its TREATED aggressively (with in 3 days) most people have no

> residual

> pain left..So the motto is.ANY PAINFUL RASH IS SHINGLES TILL PROVEN

> OTHERWISE...

>

> I am surprised that they treated the shingles with steroids.

>

> Deb Rn

[Guest guest]

Thanks Sue, I'll follow that up with my specialist.  The pain tonight is almost

unbearable, even with all the pain meds he has me on.  I'll call him tomorrow

and see what he says.

Judy T

[Guest guest]

Hi all.

This is just to let you know that Lyrica has been prescribed for shingles. My

sister-in-law had it and she said it helped a great deal.

Sandi

>

> Hi Judy,

>

> So sorry to hear you have the shingles they certainly are horrible. Caladryl

lotion does help a bit as it as lidnocaine (small amount local anaesthetic in

it), which is the old treatment we always used.

>

> With Gavapentin - it is extremely expensive in Oz - @ $90+ as not on PBS. My

husband has trigeminal nerve damage from his stroke and finally after many

consults, the specialist said to try Gavapentin, but is only available for

epilepsy here and realistically we couldn't afford it. The other alternatives

were Amitryptiline (didn't do anything) and Tegretol another epilepsy drug which

has helped a lot. Best of luck and so sorry to hear you have had to put off your

Canada trip as I know how much you were looking forward to it.

>

> Regards

>

> From: Judy Telford <judy_telford@...>

>

> Cc:

> Sent: Monday, 13 December, 2010 12:31:13 AM

> Subject: [ ] shingles

>

>

>  

> Thanks Sue, I'll follow that up with my specialist.  The pain tonight is

almost

> unbearable, even with all the pain meds he has me on.  I'll call him tomorrow

> and see what he says.

> Judy T

>

>

[Guest guest]

Hi Everyone,

LDN has been a miracle for me. But now my bride of 53 years has shingles. Does anyone have any experience with LDN in the treatment of shingles. She has a very bad case and is taking antiviral and steroid medications which seem to be helping a little.

You all have been great in helping me over the past 3 years as I took my prostate cancer into remission with LDN alone.

Philip Flournoy