I'm new

[Guest guest]

Could she have been talking about the HBL 7 or the HBL 27? No blood

test for PA as a stand alone test that I know of. PatB

> Hey I just found out. Great, I'm member of a French on and I was

> looking for info and nobody seem to know.

>

> I went to see my rheumatologist on Tuesday and she talked to me

about

> a protein in the blood. And from there it's blank.

> She thinks that I have PA, which two of my cousin have.

>

> Is that protein in the blood is relate with PA or I did dream or

> heard

> what I want to hear?

>

> I'll give your adress to my cousins. I just heard about one today

and

> she need to go off work for 6 weeks for treatment. She'll have

planty

> of time to read you and practice her English.

>

> Thanks you for the info your gona give me.

>

> Carolynn

[Guest guest]

hi nancy,

welcome to the list--hope you get the info and support you are looking for!!! this list is full of great sources of both!!

glad you are here!

brigit,

in albany, ny

[Guest guest]

Glad you are here I am looking for support and reassurance and its been a

great place for that

[Guest guest]

At 05:09 PM 03/30/2001 EST, you wrote:

>Hi,

>

>I am the mother of a one-year-old daughter who is not vaccinated. She was

>also born at home with the help of a midwife. We use both a naturopath

and a

>pediatrician for her health care. At this time I am only considering the

>tetanus vaccine, but I am definitely in need of more information before I

>move forward with this. As I'm sure you know, there is always pressure from

>outsiders to vaccinate, or to question our health-care decisions. I'd like

>to be part of a discussion group for both support and information. I heard

>about this group through the Mothering Magazine discussion group.

>

>

>

http://www.nccn.net/~wwithin/tetanus.htm

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

Sheri Nakken, R.N., MA

Vaccination Information & Choice Network, Nevada City CA & UK

530-478-1242 Voicemail

http://www.nccn.net/~wwithin/vaccine.htm

" All that is necessary for the triumph of evil is that good men ( &

women) do nothing " ...Edmund Burke

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

Well Within's Earth Mysteries & Sacred Site Tours

http://www.nccn.net/~wwithin

International Tours, Homestudy Courses, ANTHRAX & OTHER Vaccine Dangers

Education, Homeopathic Education

CEU's for nurses, Books & Multi-Pure Water Filters

[Guest guest]

In a message dated 24/04/01 22:11:59 GMT Daylight Time, t1gg3r40@... writes:

How do you all cope with so much pain? there are some days when i can't even stand uup.

Welcome Gill,

We cope, because, like you, we have too !!! and of course, we have all 'been' there, days when we can't stand up!! (infact many days :-) )..

It is something, that over time, we come to accept, (to a certain degree!) our condition. We then adjust our lives accordingly to accomodate it !! (we are obliging people aren't we !!! lol)...

Take care.

Mike (from the UK)

[Guest guest]

In a message dated 04/24/2001 5:11:57 PM Eastern Daylight Time,

t1gg3r40@... writes:

<< How do you all cope with so much pain? there are some days when i

can't even stand uup. >>

Gill - I hope you are seeing a rheumatologist. There are many drug options

available to help you deal with the pain and inflammation, and you don't say

what you are taking if anything. Coping with pain is difficult and

exhausting. Get as much rest as you can and limit your stress as far as

possible. Maybe others could help you with your responsibilities - don't be

afraid to ask!

Best of luck,

[Guest guest]

Do you fantasize about being pain free? Sometimes as I try to fall asleep, and try not to hear my tinitus (constant ringing and noise in my ear due to shingles in my ear and head), and not feel the PA pain I wonder what it must have been like BEFORE. Been so long I can't recall.

[Guest guest]

In a message dated 04/26/2001 3:05:15 AM Mountain Daylight Time, Toadessa7@... writes:

try not to hear my tinitus (constant ringing and noise in my ear due to shingles in my ear and head),

I just wanted to let you know what works for me to rid myself of that ringing in my ears. It's silly--but it works! Hold your hand above your head, just like raising your hand in class, maybe 15 or 20 seconds. It works for me every time. I don't know why it works but I'm glad it does and hope it gives you some relief also.

I would also like to ask about shingles. I was diagnosed yesterday with a patch on my back. I guess I don't know enough about it. I was given an anti-itch pill and an antibiotic. The itching is definitely better. I've been banned from my arthritis aquatic exercise class for a few weeks (that makes me very sad and a little frightened) and have been taken off the Methotrexate until the lesions heal (that is bittersweet--I hate the drug because it make me sick for 2 days after the injection but I am also a little frightened to be without it). No mention was made of the Remicade infusion because I'm not due for another injection for about 6 weeks.

I'm really confused at the moment but hope to become more educated about shingles. It does go away? Are there after effects? Am I contagious? Why can't I swim?

Hoping you are all feeling better today,

Jeanne In Idaho

[Guest guest]

Hi,

don't know that I fantasize but I often try to

think of the beach / ocean and hear the sound of

the waves rolling in....basically a thought

process of something that is peaceful to me.

doesn't always work but worth the try.

nanc

--- Toadessa7@... wrote:

> Do you fantasize about being pain free?

> Sometimes as I try to fall asleep,

> and try not to hear my tinitus (constant

> ringing and noise in my ear due to

> shingles in my ear and head), and not feel the

> PA pain I wonder what it must

> have been like BEFORE. Been so long I can't

> recall.

------

Think of it as a simple form of meditation. Relax and think pleasant thoughts to

alleviate any stress that aggravates the PA. PatB

[Guest guest]

> In a message dated 04/26/2001 3:05:15 AM Mountain Daylight Time,

> Toadessa7@a... writes:

>

>

> > try not to hear my tinitus (constant ringing and noise in my ear

due to etter. I've

> been banned from my arthritis aquatic exercise class for a few

weeks (that

> makes me very sad and a little frightened) and have been taken off

the

> Methotrexate until the lesions heal (that is bittersweet--I hate

the drug

> because it make me sick for 2 days after the injection but I am

also a little

> frightened to be without it). No mention was made of the Remicade

infusion

> because I'm not due for another injection for about 6 weeks.

>

> I'm really confused at the moment but hope to become more educated

about

> shingles. It does go away? Are there after effects? Am I

contagious? Why

> can't I swim?

> Hoping you are all feeling better today,

> Jeanne In

Idaho

Jeanne, Where in Idaho do you live? My name is Dena and I live in

Idaho Falls. Anyway you asked about Shingles. The very most important

thing for you is to take the antibiotic faithfully! I assume it is

Famvir or something similar. They give you this also when you begin

chickenpox, Since they are both part of the Herpes complex virus and

they have found that these viral RXs will actually lessen the amount

of overall skin rash and they can also make you recover faster,

Without the antibiotic you would be at the mercy of letting it run

its course and with Shingles it varies in severity and time. Some

people will continue with symptons for years. BUT you won't because

they started you on RXs. You must have a good Dr. Incidently just in

case you don't see much difference in your rash take inventory of

your spots. I let my kids play follow the dots with a pen--Just

kidding, but you do feel like a dot to dot picture book sometimes

don,t you? Anyway if you find that your spots are not following the

nerve pattern (like all on one side of your body) you may want to ask

your Dr. about Guttate psoriasis. I was initially diagnosed with

shingles but they continued to spread all over me and was later

diagnosed with this rare form of PA. It can look just like Shingles,

BUT for heavens sake do not stop taking your anti-biotics until your

Dr. says or you'll be sorry. As for the swimming I'm not exactly sure

why they asked you to stop-maybe water(chlorine) can aggravate the

condition. Also as with chicken pox or any open rash you could

develop infection. Is the pool outside? Some of the RXs make you much

more sun sensitve. Oh Yeah- This is Idaho in April -even though it

was 80 degrees yesterday here you probably do not have access to an

outdoor pool yet. Hang in there and I hope you nip it in the bud with

those RXs. Feel better Dena from Idaho

[Guest guest]

> In a message dated 04/26/2001 3:05:15 AM Mountain Daylight Time,

> Toadessa7@a... writes:

>

>

> > try not to hear my tinitus (constant ringing and noise in my ear

due to

> >

>

> I just wanted to let you know what works for me to rid myself of

that ringing

> in my ears. It's silly--but it works! Hold your hand above your

head, just

> like raising your hand in class, maybe 15 or 20 seconds. It works

for me

> every time. I don't know why it works but I'm glad it does and

hope it gives

> you some relief also.

>

> I would also like to ask about shingles. I was diagnosed yesterday

with a

> patch on my back. I guess I don't know enough about it. I was

given an

> anti-itch pill and an antibiotic. The itching is definitely

better. I've

> been banned from my arthritis aquatic exercise class for a few

weeks (that

> makes me very sad and a little frightened) and have been taken off

the

> Methotrexate until the lesions heal (that is bittersweet--I hate

the drug

> because it make me sick for 2 days after the injection but I am

also a little

> frightened to be without it). No mention was made of the Remicade

infusion

> because I'm not due for another injection for about 6 weeks.

>

> I'm really confused at the moment but hope to become more educated

about

> shingles. It does go away? Are there after effects? Am I

contagious? Why

> can't I swim?

> Hoping you are all feeling better today,

> Jeanne In Idaho

JEANNE- THIS IS DENA AGAIN. YOU CAN BE CONTAGIOUS.If there is anyone

around you that has not had chicken pox or the vaccine there is the

possibility they could aquire them. Usually they would have to be

vulnerable or aged to get shingles from you. If they have had

chickenpox before and are under stress they are more likely to get

shingles. Like one time my dad broke his ribs (really bad) and he

contracted shingles due to his physical injury. I'm not a doctor but

I hope this has helped. You also might want to look up Shingles on

the internet for more up to date information.

[Guest guest]

In a message dated 4/26/01 7:22:43 PM Pacific Daylight Time, now4now5@... writes:

I'm really confused at the moment but hope to become more educated about shingles. It does go away? Are there after effects? Am I contagious?

Why

My sister had shingles a couple of years ago and they stayed with her for almost 6 months sorry to say. Her doc told her that shingles was an adult form of the chicken pox virus--go figure??He told her they could-not necessarily be-contagious. Needless to say I stayed away from touching distance until they cleared up. That's about all the input I have on that. Hope yours go away quicker..

[Guest guest]

Hi Dena,

Thanks for the info about shingles. I am beginning to understand more so I am also beginning to feel better about the whole thing. The lesions seem to be healing well so I hope to be back in the pool next week. I laughed about the outdoor pool remark in Idaho in April. You're right though about the weather--it has been wonderful. Which makes me think about something that happened last summer that I hadn't associated with PA. I'm not sure if it's heat or sun but I seem to swell quite a bit in the summer. I can't wear rings because before I know it my hands can be quite swollen and removing the rings is difficult. I remember that during the fair last year I had plans to go with friends but was feeling poorly the night before and nearly canceled.

However, I woke up the next morning feeling great and we spent hours in the sun enjoying the fair. I paid for it dearly the next day though--very swollen and barely able to walk. At that time I blamed it on too much walking the day before but now I think I understand I need to stay out of the sun. Since summer is coming I'm sure I'll have more chances to confirm this though. I live in Boise and there is always so much to do here in the summer. I guess maybe I'll invest in large hats and umbrellas! Hoping all are doing well today.

Jeanne In Idaho

[Guest guest]

> Jeanne,

This is Dena. I'm sure glad you got a grip on those Shingles!

Catching them early and getting on the antibiotic is KEY to a good

outcome. Boise is a beautiful place. I've got some cousins and Aunt-

Uncle that live there. My oldest daughter moved there about 2 years

ago to attend B.S.U. She really likes it there.She comes home and

says it is so much colder in I.F. I know what you mean about the sun

and heat. Although I can just walk through the mall and everything

swells,even my face! I hate it. I actually have a pool in the back

yard and find that if I go out before about 4:00 P.M. I get sick. I

sometimes can't decide if it is the illness or the meds or a little

of both. Anyway in the winter when the pool is FROZEN SOLID I can

really feel like I go downhill. The swimming is the only thing I seem

to be able to do as far as excercise.OOOH_It makes me mad!! I used to

be sooo active. Oh well, I should be thankful for what I can do.Hang

in there and I hope great days are ahead for all of us!! Dena

> Thanks for the info about shingles. I am beginning to understand

more so I

> am also beginning to feel better about the whole thing. The

lesions seem to

> be healing well so I hope to be back in the pool next week. I

laughed about

> the outdoor pool remark in Idaho in April. You're right though

about the

> weather--it has been wonderful. Which makes me think about

something that

> happened last summer that I hadn't associated with PA. I'm not

sure if it's

> heat or sun but I seem to swell quite a bit in the summer. I can't

wear

> rings because before I know it my hands can be quite swollen and

removing the

> rings is difficult. I remember that during the fair last year I

had plans to

> go with friends but was feeling poorly the night before and nearly

canceled.

> However, I woke up the next morning feeling great and we spent

hours in the

> sun enjoying the fair. I paid for it dearly the next day though--

very

> swollen and barely able to walk. At that time I blamed it on too

much

> walking the day before but now I think I understand I need to stay

out of the

> sun. Since summer is coming I'm sure I'll have more chances to

confirm this

> though. I live in Boise and there is always so much to do here in

the

> summer. I guess maybe I'll invest in large hats and umbrellas!

> Hoping all are doing well today.

> Jeanne In Idaho

[Guest guest]

In a message dated 4/28/01 5:26:17 PM US Eastern Standard Time,

now4now5@... writes:

<< I'm not sure if it's

heat or sun but I seem to swell quite a bit in the summer. >>

Jeanne - My tennis balls (feet) turn into bowling balls in the summer. Don't

know why the heat or humidity or whatever cause this, but for years my

swelling has always been twice as big and twice as uncomfortable in the

summer months. I've heard that drinking a lot of water helps REDUCE

swelling. Apparently, you hold water if your body thinks you aren't taking

in enough? But tons of water and even lasix don't make a bit of difference

for me. Neither does elevation. I just live with it, but it's uncomfortable

until about October.

[Guest guest]

& lt; & lt;I just went up to 1.25mg today. & gt; & gt;<br><br>Whoops...I meant .125mg

<br>~K

[Guest guest]

Hi kiki_blue. Welcome. I have Hashimoto's. It was

passed to me from my birth father's side. I have two

sisters who have it, and my thirteen-year-old daughter

and twelve-year-old son have it also. I suffered from

depression for years. Now that I'm taking Armour Thyroid, I

am doing much better. My kids are doing very well on

it too. I have no experience with rheumatologists,

but I hope yours can help you find the answers you're

looking for. <br><br>Tammie

[Guest guest]

I take 125 mcgs.. not sure what that translates in to in mg. Sorry.<br><br>Ree

[Guest guest]

Hi K....<br><br>Welcome to the club! I also have

Hashi's -- diagnosed in May/June. I don't know who I got

this disease from -- no one on either side has it that

we know of. My children's pediatrician suggested

waiting a couple of years (until my oldest is 9) before

testing to see if they, too, have Hashi's. <br><br>I'm

doing great since being on Armour Thyroid (6 weeks

now). I was on Levoxyl before that and had a lot of

hairloss and my symptoms weren't improving (very sluggish

and sleepy all the time, trouble concentrating --

brain fog).<br><br>I've never been to a Rheumatologist

-- let us know how your visit turns out.<br><br>Good

luck!<br><br>Yvette

[Guest guest]

welcome Bev, it is great to have you onboard.

Donna

[Guest guest]

Hi Bev,

Welcome to the group! This is a wonderful, friendly place, I

think you will like it here. Sounds like your husband is pretty lucky

to have you around! If you have questions, never be afraid to ask.

All of us here started out knowing NOTHING, and there are no dumb

questions.

Did your husband just find out he has HCV? Has he had a biopsy

yet, or found out his genotype? Hummm.... guess I should warn you, we

are a nosy bunch too, lol! Welcome to the family!

Claudine

__________________________________________________

[Guest guest]

Hi Beverly, your husband is a lucky man. Welcome to

you both.

C

__________________________________________________

[Guest guest]

Welcome to our group...we're glad you joined us. Don't hesitate to ask

us any questions....lots of us will have answers for you.

Blessings

Tatezi

cwlistmom wrote:

> Hello everyone!

>

> My name is Beverly and I just joined your group.

--

If you talk to the animals they will talk with you and you will know

each other. If you do not talk to them, you will not know them, And what

you do not know you will fear. What one fears one destroys. ~Chief Dan

~

[Guest guest]

Welcome to our group...we're glad you joined us. Don't hesitate to ask

us any questions....lots of us will have answers for you.

Blessings

Tatezi

cwlistmom wrote:

> Hello everyone!

>

> My name is Beverly and I just joined your group.

--

If you talk to the animals they will talk with you and you will know

each other. If you do not talk to them, you will not know them, And what

you do not know you will fear. What one fears one destroys. ~Chief Dan

~

[Guest guest]

Welcome william and betsy

hope you can learn and gain from your time here , I certainly have! A lot of

great people come here and post and offer support and LOTS of info

Suzy

_________________________________________________________________

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