hello!

[Guest guest]

List,

From Diane Diamond, producer of CNBC Up Front Tonight with Geraldo .

Just wanted to update you all.

Lori

----------

| From: DiDimond@...

| david.greenleaf@...

| Subject: Hello!

| Date: Monday, March 01, 1999 6:44 AM

|

| Lori!

| Sorry it took so long to get back to you. First, there was a delay in

getting

| the tapes from our affiliate in upstate New York - then we had to send

them

| out to have them dubbed because they use an old/old format ... so,

anyway!

| Our reporter Jane Wells is so interested in this story. One of us is

going to

| do it soon - just got to clear our calendars. Isn't it odd that the

stories

| you want to do the most always have to come after everything else!

| Anyway - the tapes should be back from dubbing today - I'm looking at 'em

and

| pushing to get this on the sked.

| Let you know WHEN when I know.

| All the best

| Diane

[Guest guest]

Dear Joy,

Welcome. Voltaren is a relatively safe, strong non-steroidal anti

inflammatory (along the lines of a super Advil). It should help

significantly with moderate pain you may have. It will do nothing to stop

the progression of the disease destroying your tendons, ligaments and joints.

Before you decide to go all natural or even to grit your teeth and bear it, I

would recommend that you discuss with your rheumatologist how much damage is

already done and what he forsees for your particular case. Remember, once

you lose it , the only way to get a joint back is with big time surgery -

joint replacement.

Just some food for thought.

[Guest guest]

At 01:01 AM 7/29/99 -0400, you wrote:

>From: " Joy " <joyt@...>

>Is anyone out there getting relief through natural means (herbs, foods,

>exercise)? Since there doesn't seem to be a fast progression to my disease

>right now....my rhemy seems willing to give me some leeway. Any advice?

>Joy Tarleton

I'm having some amazing results with some supplements I'm taking from a

company called Usana based in Salt Lake City, UT. They're vitamins,

minerals, and antioxidants (like grape seed extract), and they're

pharmaceutical-grade, meaning their manufacturing process is regulated by

the FDA for pharmaceuticals, and their products that I'm taking are listed

in the 1999 Physician's Desk Reference under prescriptions, even though they

are just nutritional supplements. The founder of the company is a

scientist--microbiologist and immunologist--whose first company, Gull

Laboratories, developed the first commercially available epstein-barr virus

test kits that are used today in doctor's offices all over the world. These

aren't your average nutritionals. They're also a publically-traded debt free

company. I'm giving this background because I've never found any other

supplements so carefully made as these are--made as carefully as

pharmaceuticals, and that matters a lot to me. I like to know what's in this

stuff. I won't bore you with further details, but if you want to check them

out further, their website is www.usana.com.

Anyway, I'm taking their Essentials, which is a mega-antioxidant and a

chelated mineral that's been carefully balanced so all the nutrients work

together for optimum health, rather than minimum health like most

supplements. I've compared the labels and I can't find anything with the

amounts that are in these. They've been formulated based on 20 years of

human-cell culture research. I'm also taking their Poly C and Proflavanol.

The proflavanol is grape-seed extract, the most powerful antioxidant known.

The Poly C is vitamin C from organic sources, along with the other nutrients

needed to make the C longer lasting in the body and more able to be

utilized. I'm adding their Opt-Omega product starting today. It's an oil

that provides the EFA's the body needs. It's a natural anti-inflammatory and

is really important for the body's health. I've seen a lot of articles in

the last year or two about needing EFA's. Usana only uses organic raw

materials in their products, btw.

When I started researching this condition and realized PA was an auto-immune

disorder, I decided to go at this by building up my immune system instead of

suppressing it like many of the traditional drugs do. It seemed logical to

me that if the immune system was strengthened, it was more likely to

function properly than not. If the body is given what it needs for good

health, it is designed to be able to heal itself. If it doesn't have what it

needs, no matter what, it can't function properly. So I'm giving it what it

needs, since obviously it wasn't getting it from the foods I was eating.

Also, a lot of the research on arthritis is finding that there are a lot

more free radicals in an arthritic joint than in a healthy joint. The way

to neutralize free radicals is with anti-oxidants, so that's why I'm taking

as much as I can of those. There's a really good article about oxidation and

degenerative diseases at wwww.raystrand.com.

I was taking the supplements for two weeks and was almost completely pain

free, except for a twinge here and there, especially during my water

aerobics class. My fatigue had also been minimized. I wasn't stiff in the

mornings, my knees didn't hurt after sitting for a while, and I had energy

to get through the day without having to nap. I have a new baby (which is

what triggered this first major flare-up of all my joints) and when this hit

when she was 5 weeks old, I couldn't even hold her for longer than a few

minutes the pain was so bad. On the supplements I wasn't having any trouble

holding her all day long. I had so much energy I wasn't sure what to do with

myself! It had been so very long since I had any to spare.

I ran out of the supplements about a week and a half ago and didn't have

money to buy more for about a week. Each day I went without them the pain

came back a little at a time until I was back to being unable to hold Abbie

for longer than a few minutes, and the fatigue was back too. But my order

came yesterday and last night I had enough energy to go to a party with my

husband. The pain had also diminished, although it's not all gone yet of

course. It's light enough that I don't feel the need to take any ibuprofen

at this point. Not that the ibuprofen was doing much before! This morning

for the first time I actually woke up *before* my baby, and had energy to

just get up and get moving for the day. She woke up 15 minutes later, but

hey! To me that's major progress ;-). The water aerobics class three times a

week is a big help too, and I've been going faithfully. My blood-shot eyes

are proof of that ;-). I was taking the herb chapparal, but found that it

wasn't doing anything after all. It could have been the brand I was using

-- who knows what's in it, since I don't know anything about the company

that makes the product. If I decide to add it again, I'm going to grow and

dry it myself and use it in a tea infusion. But right now I don't see the

need for it.

Well, that's what I'm doing and it seems to be working. I have a friend in

Colorado who has Rheumatoid Arthritis. She's also an RN. She told me she's

been able to stay of prescription meds (the same that are given for PA) by

taking these same supplements I'm taking. I can fwd her msgs to you if you

want to hear it from someone else as well. RA and PA are both inflammatory

arthritises, and they're treated the same except of course for the P, from

all I've been able to figure out.

Kathy Fowkes

fowkes@...

[Guest guest]

Thanks Kathy,

I'll definately check this out! Your view of treatment is similar to

mine...treat the immune system. My PA was brought on from stress and very

little sleep for almost 2 years (I had a baby with a sleep disorder....slept

only 30 minutes at a time...day and night...was/is mostly or all food

allergies..but that is a whole other email loop isn't it!) My whole immune

system just shut down....got every cold, flu, virus that I came in contact

with...got athletes feet that would not go away and even went into my

toenails....gained weight...feet started hurting so bad I couldn't hardly

walk...had chest pains (now I think it was pleurisy....stabbing pain as I

breathed)...and all of a sudden I had mitral valve damage (very slight

though), and several bad cases of Psoriasis. My doctor would have not tested

me for RA except I had been reading on my own and begged him to run the RA

blood test. He said I didn't have RA but would run it to humor me. He was

surprised to have it come back positive for RA related disease! I'm glad I

do my own research....I may have been like my friend who has had RA for 8

years (VERY severe for the last 5 years) and was not diagnosed until 2

months ago AFTER much damage has already been done!

I have already gone on a general vitamin, glucosamine HCL, and yucca. I feel

better when on the vitamin and Glucosamine than when off....I haven't

decided about the yucca yet.

Joy

>When I started researching this condition and realized PA was an

auto-immune

>disorder, I decided to go at this by building up my immune system instead

of

>suppressing it like many of the traditional drugs do. It seemed logical to

>me that if the immune system was strengthened, it was more likely to

>function properly than not. If the body is given what it needs for good

>health, it is designed to be able to heal itself. If it doesn't have what

it

>needs, no matter what, it can't function properly. So I'm giving it what it

>needs, since obviously it wasn't getting it from the foods I was eating.

>Also, a lot of the research on arthritis is finding that there are a lot

>more free radicals in an arthritic joint than in a healthy joint. The way

>to neutralize free radicals is with anti-oxidants, so that's why I'm taking

>as much as I can of those. There's a really good article about oxidation

and

>degenerative diseases at wwww.raystrand.com.

[Guest guest]

Kathy...

That is some excellent information on the " natural " things to try. THANK

YOU!! I am going to look into it. I would always rather go the holistic way

vs some of the modern med way. Also I am going to start seeing a lady who is

certified in homeopathy (sp). She had helped me with my irritable bowel, so

why not this!. Also massage therapy with aromatherapy has been wonderful in

addition to swimming.

Keep me posted on all the herbs stuff you find out!

[Guest guest]

Joy,

Your case sounds almost exactly as mine except my feet were quite

painful at first. Voltaren is merely an anti inflammatory and as you

will find from most of us—we are for aggressive treatment. Once you have

allowed the disease to take over and damage is done it is permanent. It

is better to keep things at bay to reduce your risk of damage.

Dez

[Guest guest]

But is Voltaren perscribed to stop progression of the disease or for my

comfort. I read that it can damage your liver also. I know that sometimes

the cure can be as bad in the long run as the disease in some instances. I

also am noticing that a lot of people are saying they had to move on to

other anti-inflammatory medication....is this because it loses its

effectiveness after taking it for a time?

Joy

Re: [ ] Hello!

>From: Stimson <directgrafx@...>

>

>Joy,

>Your case sounds almost exactly as mine except my feet were quite

>painful at first. Voltaren is merely an anti inflammatory and as you

>will find from most of us—we are for aggressive treatment. Once you have

>allowed the disease to take over and damage is done it is permanent. It

>is better to keep things at bay to reduce your risk of damage.

>Dez

>

>

>---------------------------

[Guest guest]

Hi Lucas,

Sorry to hear you had to get out. We sure are trying to change the

course of this issue. Just sent my husband to DC to testify, what we

need is prayer! The best thing you can do is educate yourself on all

aspects of this vaccine then start hollering real loud, also try to

educate others around you. Write the newspapers in your area, get ahold

of the media; tv and radio. Call into talk shows and bring up this

issue. That is about all we can do right now. Keep in touch, brother!

Just remember God is leading this thing, also beat Goliath!

Your sister in Christ,

Bonita

lucas marshall wrote:

>

> From: " lucas marshall " <coolhandluke1@...>

>

> Hello my name is Lucas Marshall. I was recently discharged from the USAF

> for refusing the Anthrax vaccine. Please send me any info on how to fight

> this. I never wanted to get out. Thank you.

>

> Your brother in Christ

> Lucas Marshall

>

[Guest guest]

I suggest that you talk to Mark Zaid, whose e-mail address is Zaidms@...

He is an attorney in Washington D.C. and he helps servicemembers who are

refusing the anthrax vaccine.

Perhaps he can help you have your discharge classification(OTH, etc.) changed

down the road with an appeals process. I would also suggest contacting the

DAV or the VFW or the American Legion...maybe they can put you in the right

direction.

Also, contact a local Air National Guard unit or an Air Force REserve

unit...maybe they can help you out.

Also, contact your senator or congressman and ask for help with the appeals

process.

Also, perhaps look in the back of the Air Force Times or the Navy or Marine

Corps or Army Times and read under the classified section for an attorney,

especially one with prior military attorney experience.

Hope this helps.

From: " lucas marshall " <coolhandluke1@...>

Hello my name is Lucas Marshall. I was recently discharged from the USAF

for refusing the Anthrax vaccine. Please send me any info on how to fight

this. I never wanted to get out. Thank you.

Your brother in Christ

Lucas Marshall

Our Anthrax information web site: http://www.dallasnw.quik.com/cyberella/

To visit Dr. Meryl Nass's web site, go to: http://www.anthraxvaccine.org

Contact list owner: Gretchen Whitney at: anna_nim@...

[Guest guest]

In a message dated 9/30/99 12:44:24 PM Pacific Daylight Time,

Lyn_55@... writes:

<< So...that's me...I will be listening intently to learn about this.... >>

Lyn..welcome and please give us your input also. I have learned so much from

this PA list...it is amazing all the symptoms that are not listed in the

research I have done...but are common among the PAers on this list.

I hope the stress of that divorce is soon behind you and you are feeling

better soon...take care,

Annette

[Guest guest]

Hello:

My name is Sisha and I will be getting discharged from the Air Force

soon for refusing the anthrax vaccination. I was just curious as to what

kind of discharge you recieved? My first shirt told me that I would get

General Under Honorable.

Thanks- Sisha

Hello!

> From: " lucas marshall " <coolhandluke1@...>

>

> Hello my name is Lucas Marshall. I was recently discharged from the USAF

> for refusing the Anthrax vaccine. Please send me any info on how to fight

> this. I never wanted to get out. Thank you.

>

>

> Your brother in Christ

> Lucas Marshall

>

[Guest guest]

Dear Toni,

Welcome, and may I make a suggestion as to a remedy that will help clear

up the eczema your baby has, I have had great success myself with this

product, it is called grapefruit seed extract, you can buy it a healthfood

store, you will dilute it with water and pat the areas with it, there is a

book out on this product and it really is a cure all for many skin problems

Good Luck, Theresa

[Guest guest]

Thanks Theresa,

We have tried everything else and it was on our list but she has cleared up

pretty good. We might try it on the few spots she still has but nothing

else worked except a severe change in my diet. I mean we tried EVERYTHING

else. We have heard good things about grapefruit seed extract so it might

be worth a shot.

Re: Hello!

> From: TMod@...

>

> Dear Toni,

> Welcome, and may I make a suggestion as to a remedy that will help

clear

> up the eczema your baby has, I have had great success myself with this

> product, it is called grapefruit seed extract, you can buy it a

healthfood

> store, you will dilute it with water and pat the areas with it, there is

a

> book out on this product and it really is a cure all for many skin

problems

> Good Luck, Theresa

>

> >

[Guest guest]

it is strange that yo say that about your daughter I was just having the

same conversation with my daughters () doctor about the difference

between her and other children her age we never really see it until she is

at school or the play ground it is simple thing like the way she runs (she

runs on her toes) and she is not as agile as the rest of them as far as her

hands they seldom hurt her and when they do she tucks them in her shirt like

as you said a broken wing that is hart wrenching . She cant jump around or

just do general play she is slower and she is sooooooo shy no body can get

near her and some times people say hello to her and get put off because she

just lookes away well good luck with you daughter it sound like you have a

busy home I have 3 children as well they are 11 3 and 2 my youngest was only

a baby like yours is when got sick it was tough it was like having

twins ha ha ha except needed more than the baby well see you

>From: Amy Fox <foxpro@...>

>Reply- onelist

> onelist

>Subject: [ ] Hello!

>Date: Tue, 02 Nov 1999 23:08:47 -0800

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>

>From: Amy Fox <foxpro@...>

>

>First, I have a *suggestion*. After your name could you write your

>children names and which one has JRA. This would be helpful for me to get

>to know you better.

>

>Today we were playing games after gymnastic class and I had crawl

>like a kitty cat. On her right side, she would drop down to her

>forearm. So, she looked like a wounded bird when she was crawling. So,

>tonight hubby had her make fist instead of putting her hands down. She

>could do it for a little while. But on that same side she stuck out her

>index finger. Anyway, it is very hard to watch your child not do the stuff

>like other kids.

>

>I have also noticed that she makes fist when she is getting off the ground

>(instead of putting her hands flat). Anyone else have kids doing the same

>thing?

>

>~Amy

>Mommy to - 3years old JRA

>Mommy to Andy - will 2 years old at Thanksgiving

>Mommy to Maddie - 5 1/2 months old

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Amy,

My daughter Mandy, is 12 with JRA.

I have a son Josh, 14. Janet Moyer

[Guest guest]

Hi Amy:

FYI- In the beginnig, when my daughter was first diagnosed with JRA, she used to

crawl with her left hand fingers held upright (instead of her palm being flat on

the floor). It seemed she had limited range of motion in her left wrist and also

her wrist hurt. So every time she did that we tried to correct it. Also, we

used to take her to an occupational therapist who gave us some wrist exercises

which helped alot. Now she does not do that any more and even if she does it at

times we know it's out of habit than limitation in range of motion or her wrist

hurting. Are you seeing any type occupational therapist?

Afsi - Mommy to Mazi 8 and Sara 3

Amy Fox <foxpro@...> on 11/03/99 02:08:47 AM

Please respond to onelist

onelist

cc: (bcc: Afsi Goodarzpoor/C/Fairfax/Mobil-Notes)

Subject: [ ] Hello!

From: Amy Fox <foxpro@...>

First, I have a *suggestion*. After your name could you write your

children names and which one has JRA. This would be helpful for me to get

to know you better.

Today we were playing games after gymnastic class and I had crawl

like a kitty cat. On her right side, she would drop down to her

forearm. So, she looked like a wounded bird when she was crawling. So,

tonight hubby had her make fist instead of putting her hands down. She

could do it for a little while. But on that same side she stuck out her

index finger. Anyway, it is very hard to watch your child not do the stuff

like other kids.

I have also noticed that she makes fist when she is getting off the ground

(instead of putting her hands flat). Anyone else have kids doing the same

thing?

~Amy

Mommy to - 3years old JRA

Mommy to Andy - will 2 years old at Thanksgiving

Mommy to Maddie - 5 1/2 months old

Visit my homepage for a list of sites with info on childhood arthritis:

http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Yes has always used her fist for getting up, still does.

[Guest guest]

At 11:32 PM 11/3/99 -0500, you wrote:

>From: LinGS544@...

>

>Hi Yes has always used her fist for getting up, still does.

>

>

,

I'm curious what your dr. had to say about her using her

fist? doesn't see her dr. until next Thursday. I'm not sure if I

should be concerned about this or not.

Amy

[Guest guest]

Hi!

My son Robbie is 12 and has JRA. I also have a 16 year old daughter, Hailey.

(Robbie will be 13 on Nov 14th, 2 teenagers!) My husband is Rob, in case he

ever joins in.

Jana Becker

[Guest guest]

Hello Amy,

My son Josh has been having increased difficulties with hiw wrists and

fingers again. And we once thought that was a thing of the past, after

it first migrated and seemed to settle in his feet and ankles. I hope

you saw the post I made recently about PT exercises. Very helpful

suggestions were given. For a while, Josh was doing sqeezing exercises

with a foamy rubber ball. And more specifically for his wrists, playing

with a yo yo was a fun way for him to get the exercise he needed. It

seems like right now he has some limited range of movement in his wrists

but he's been exercising them today by playing the ukulele. Play dough

or clay is another good activity that will allow for more finger

movements and at the same time it's very fun for younger kids. You can

even let some of the creations dry for keepsakes. Relatives and friends

love to receive them for holiday gifts :-)

Take Care,

Georgina

10 year old Josh's Mom

8 year old Kayla's Mom .... I remembered!!!!

Amy Fox wrote:

>

> From: Amy Fox <foxpro@...>

>

> First, I have a *suggestion*. After your name could you write your

> children names and which one has JRA. This would be helpful for me to get

> to know you better.

>

> Today we were playing games after gymnastic class and I had crawl

> like a kitty cat. On her right side, she would drop down to her

> forearm. So, she looked like a wounded bird when she was crawling. So,

> tonight hubby had her make fist instead of putting her hands down. She

> could do it for a little while. But on that same side she stuck out her

> index finger. Anyway, it is very hard to watch your child not do the stuff

> like other kids.

>

> I have also noticed that she makes fist when she is getting off the ground

> (instead of putting her hands flat). Anyone else have kids doing the same

> thing?

>

> ~Amy

> Mommy to - 3years old JRA

> Mommy to Andy - will 2 years old at Thanksgiving

> Mommy to Maddie - 5 1/2 months old

[Guest guest]

Hi Laurie,

Welcome to the rest of us who ask lots of questions.

You wrote about your husband: He has the arthritis in his

feet, knees, hips, sternum (often very bothersome), hands, and

the worst is his neck. He has almost no flexibility left in his neck. "

You're the first one to give a description so close to what I

experience.

No one else has admitted to the arthritis in the sternum and neck along

with the other places. Just last night I had to get up to take more

medication

and sit up for awhile to get that part to settle down. Of course, I was

having

trouble with my shoulders, hips, ankles and one great toe that didn't

even

want the blankets on it.

Has the dr. definitely diagnosed these symptoms your husband has

in these places as caused by PA?

Hope he finds the right combination soon to relieve his pain.

Patty Bacon in the Pineywoods of East Texas

[Guest guest]

Hi,

You'll find some answers here, I hope, www.whale.to/vaccines.html

www.whale.to

hello!

From: " Brad Withers " <spungulas@...>

Hi from Brad and Melody,

We're new to the list, we wanted to introduce ourselves.

We have two beautiful children, , 13 years, and Angelina, 20 months.

Our son had just about all of his vaccinations, we're not sure if he had

reactions to them or not, he had a lot of ear infections, and had trouble

breathing a lot, and broke out a lot (pimples). He was a long term breastfed

child, so thought he wouldn't get so many infections, and have so many problems,

so we didn't understand this. Our daughter had her first 2 sets of shots, and

got real sick after them. Her development seemed to slow down after them too.

We're not sure if the shots had anything to do with this but it seemed to happen

right after the shots, so we haven't continued the vaccination series.

Anyhow, we're glad there's a list like this for concerned and like-minded

people.

Brad+Melody

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[Guest guest]

I'm here, i figure everyone must be enjoying the last days of summer. glad

somone else is here. Mogdrmom

[Guest guest]

Christgine

Hi! You are not the only thinking this.. it's just nobody has posted for a while now.

[Guest guest]

Perhaps we all got better.

I am unsubscribing now. Thanks a million to all of you who replied to me

and to others, and for being there to listen to me and others

I wish you all well on your road to recovery.

Loads and loads of love

Lee