Information needed

[Guest guest]

In a message dated 05/05/2000 12:26:24 AM Eastern Daylight Time,

User102241@... writes:

<< Can anyone give me the name of the organizations that support a halt in

the AVIP. >>

<A HREF= " http://www.majorbates.com/ " >http://www.majorbates.com/</A>

Go to the left menu -- " Endorsements " -- click on it.

Buzz

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

Moderator note: exact location of above info is here:

http://majorbates.com/endorsements_main.htm

[Guest guest]

In a message dated 05/05/2000 12:26:24 AM Eastern Daylight Time,

User102241@... writes:

<< " On a relaated note, the National Academy of Sciences, Institute of

Medicine, Presidential Advisory Committee on Gulf War Illness, Verterans

Administratin, National Insitutes of Health, and the Defense Science Board

have looked at the issue

and found no evidence to link the anthrax vaccine with Gulf War Illness. " >>

,

Please ask the author if it was ever studied? How do you find a link if you

don't study it? Curious?

Buzz

[Guest guest]

,

Do you still need help with this or am I too late....

[Guest guest]

My son left for the Stennis. Unfortunately the problem has grown to the

point that he is not sure of anything in the military anymore. He last got

a book on how to become a conscientious objector while already in the

military. I don't know. He is 19 and quite confused. I do know I don't

like what I read about the vaccine, and I don't like a lot of what the

military has done as a political tool. If you can give me some information

he can use to stand up against the order to have this vaccine, it might put

a little damper on the rest of his fears. He told me how when he was in

Nuke school, it was all a game. Now that he is going to a ship, it's

becoming too real. If he could feel he has some ability to say no to

something that he feels bad about I think it would do him a world of good.

Thanks.

>From: tawnyfern@...

>Reply-egroups

>egroups

>Subject: Re: Information Needed

>Date: Mon, 8 May 2000 15:02:26 EDT

>

>,

>Do you still need help with this or am I too late....

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

In a message dated 5/14/00 5:59:38 PM Eastern Daylight Time,

danishtune@... writes:

<< My son left for the Stennis. >>

,

I didn't even see this e-mail, but I responded to her today. I know of three

refusers on the USS Stennis. They weren't treated very nicely. I told Pat I

would put her in contact with those parents if she would like.

[Guest guest]

By putting " Rhizomelic Chondrodysplasia Punctata " (yes, you spelled it right) in

Google search engine I came up with this

http://www.google.com/search?q=Rhizomelic+Chondrodysplasia+Punctata and some 316

references to that type of dwarfism. Hope they find some information they can

use.

Karolyn

Information Needed

I need some info to help a family with a child who has

Rhizomelic Chondrodysplasia Punctata. (hope I spelled that right!) we met

this family at the last regional in Myrtle Beach, SC. My son, Tony, has

achondroplasia and we are long time (he's 20) members of LPA. I am one of the

silent readers on the list and just know that there is someone on here that

can provide us with some information. The baby is in the hospital right now

at MUSC and the parents are naturally scared and anxious for their daughter.

Any help you can provide is greatly appreciated.

Thanks.

Nora Guarino

[Guest guest]

Hi Hal,

Your daughter has pauciarticular JRA meaning 4 or fewer joints are involved.Don't get me wrong Pauci can really pick on a particular joint and can be troublesome,but your little one has an excellant chance of a full remission with no permenant damage.If she is ANA positive you really,really need to make sure she sees an Opthomoligist every 3 months to check for eye inflimation even if the arthritis is under control.If you want to get involved call your local chapter of the arthritis foundation or go to www.arthritis.org,they have a wonderful website full of info and you can print out their pamphlets for free.I dont know the URL but N.I.A.M.S is another good site.In all honestly the JRA list is your one stop spot for all the info you need.Just ask us any question or concerns you have.Never feal like you are bothersome or whining,that is what we are here for.You can only read the definition of JRA so many times,you need to hear real life experiances,what other children have gone through and what has worked for them.You can never get a real feal for things until you talk to real people that know and have gone through similar situations.There is just so much info out there and not all of it is acurate,you have to be very careful of what you read.I really can't say I have a favorite site other than this list,I know as much as the rheumy's most of the time,don't get me wrong I can not treat my own child,but I have the knowledge to make important medical decisions concerning treatment options,actually my son would not be getting such aggressive treatment if I hadn't learned so much from all these wonderful paople.Please Hal,just ask away.What do you want to know?Once you get an idea, then it's helpful to go look up things like Methotrexate,NSAIDS,joint injections and such.What you said about sleeping,oh God yes,the JRA can interupt sleep.It's hard to sleep good if your in pain and unfortunatelly lack of sleep can make the JRA worse.Try a heated blanket,on top of the bottom sheet,blanket sleepers or any warm PJ,sleeping bags can help.Keep your daughter as warm as possible duiring the night to help with stiffness.If it gets to bad put her in a hot bath.It is an inconvenience in the middle of the night,but it is well worth it when it brings relief.You will not learn everything over night,but you are on the right track.Knowledge is power,and the more you know the more power you have to help your daughter.Fire those questions away,we are all at your service,more than ready and willing to help you.Looking forward to hearing from you again.My son is systemic and is borderline of being classified as medicated remission.There is not much to tell about him so I really enjoy helping others.Everyone helped me when I was totally lost and scared and fealing like it was the end of the world,so now its my turn to return the favor.

Hugs

Becki and 4systemic

[Guest guest]

Hal-

Have you subscribed to the News and Views group also sponsored by the moderator of this list? Georgina posts all the latest research and articles, and it's very helpful. Also with this group, you'll find an invaluable source of information. My daughter also has pauciarticular jra. I found that asking questions of parents who've gone through it all was most helpful because the questions I had were usually more practicle questions that those typically addressed in web articles. But if you go to the home page for this group, you'll find a list of suggested websites. As you go on, you'll likely have questions about particular medications or issues which arise regarding your child's treatment you might want to ask questions about. And Georgina is great at finding articles pertinent to questions that come up. Difficulty sleeping is pretty common during a flare. Try warm jammies, warm baths, maybe an electric blanket -- are you getting a "warm" theme here?? My daughter had one real remission after a joint injection. No meds for a year. She's now in what I'd call a medicated remission. With pauciarticular jra, your probably have a better shot for a remission. :-) Do watch out for eye trouble. Pauci kids with a positive ANA are at highest risk, and my daughter has had one flare-up of iritis. Hope this helps a little. Best of luck.

Diane (, 3, pauci)

[Guest guest]

Hal-

You also asked about getting involved and support groups . . . Have you talked with anyone at your local Arthritis Foundation chapter? Ours here in AZ is great . . . has lots of activities, speakers and a support group. I understand others are not so great. But I'd give it a try.

Diane (, 3, pauci)

[Guest guest]

Thank you, as I have questions I will ask..... The info below about the sleeping is great, thank you!

-----Original Message-----From: Arthurnator@... [mailto:Arthurnator@...] Sent: Monday, November 18, 2002 12:46 PM Subject: Re: Information NeededHi Hal, Your daughter has pauciarticular JRA meaning 4 or fewer joints are involved.Don't get me wrong Pauci can really pick on a particular joint and can be troublesome,but your little one has an excellant chance of a full remission with no permenant damage.If she is ANA positive you really,really need to make sure she sees an Opthomoligist every 3 months to check for eye inflimation even if the arthritis is under control.If you want to get involved call your local chapter of the arthritis foundation or go to www.arthritis.org,they have a wonderful website full of info and you can print out their pamphlets for free.I dont know the URL but N.I.A.M.S is another good site.In all honestly the JRA list is your one stop spot for all the info you need.Just ask us any question or concerns you have.Never feal like you are bothersome or whining,that is what we are here for.You can only read the definition of JRA so many times,you need to hear real life experiances,what other children hav! e gone through and what has worked for them.You can never get a real feal for things until you talk to real people that know and have gone through similar situations.There is just so much info out there and not all of it is acurate,you have to be very careful of what you read.I really can't say I have a favorite site other than this list,I know as much as the rheumy's most of the time,don't get me wrong I can not treat my own child,but I have the knowledge to make important medical decisions concerning treatment options,actually my son would not be getting such aggressive treatment if I hadn't learned so much from all these wonderful paople.Please Hal,just ask away.What do you want to know?Once you get an idea, then it's helpful to go look up things like Methotrexate,NSAIDS,joint injections and such.What you said about sleeping,oh God yes,the JRA can interupt sleep.It's hard to sleep good if your in pain and unfortunatelly lack of sleep can make the JRA worse.Try a heated bl! anket,on top of the bottom sheet,blanket sleepers or any warm PJ,sleeping bags can help.Keep your daughter as warm as possible duiring the night to help with stiffness.If it gets to bad put her in a hot bath.It is an inconvenience in the middle of the night,but it is well worth it when it brings relief.You will not learn everything over night,but you are on the right track.Knowledge is power,and the more you know the more power you have to help your daughter.Fire those questions away,we are all at your service,more than ready and willing to help you.Looking forward to hearing from you again.My son is systemic and is borderline of being classified as medicated remission.There is not much to tell about him so I really enjoy helping others.Everyone helped me when I was totally lost and scared and fealing like it was the end of the world,so now its my turn to return the favor. Hugs Becki and 4systemic

[Guest guest]

Hi. I just wanted to second that statement of seeing an ophthalmologist every 3 mos. I was told every 6 mos and so we did that faithfully only what happened is that one appt there was no sign of problems at all and at the next appt (5 mos later) her eyes were very bad and they said they'd been bad for a long time. We figure that she started having problems just after the previous appt and no one knew for 5 mos. I had taken her in a month early because her eyes didn't seem to be dilating the way they should and the pupil looked kind of odd shaped. I had no idea that she couldn't see well at all. She never said a thing, guess she just thought that's what things really looked like. 6 mos would be way too long and 3 would be much better. It's important to keep a close check on the eyes.

Lorie

-----Original Message-----From: Arthurnator@... [mailto:Arthurnator@...]Sent: Monday, November 18, 2002 11:46 AM Subject: Re: Information NeededHi Hal, Your daughter has pauciarticular JRA meaning 4 or fewer joints are involved.Don't get me wrong Pauci can really pick on a particular joint and can be troublesome,but your little one has an excellant chance of a full remission with no permenant damage.If she is ANA positive you really,really need to make sure she sees an Opthomoligist every 3 months to check for eye inflimation even if the arthritis is under control.If you want to get involved call your local chapter of the arthritis foundation or go to www.arthritis.org,they have a wonderful website full of info and you can print out their pamphlets for free.I dont know the URL but N.I.A.M.S is another good site.In all honestly the JRA list is your one stop spot for all the info you need.Just ask us any question or concerns you have.Never feal like you are bothersome or whining,that is what we are here for.You can only read the definition of JRA so many times,you need to hear real life experiances,what other children have gone through and what has worked for them.You can never get a real feal for things until you talk to real people that know and have gone through similar situations.There is just so much info out there and not all of it is acurate,you have to be very careful of what you read.I really can't say I have a favorite site other than this list,I know as much as the rheumy's most of the time,don't get me wrong I can not treat my own child,but I have the knowledge to make important medical decisions concerning treatment options,actually my son would not be getting such aggressive treatment if I hadn't learned so much from all these wonderful paople.Please Hal,just ask away.What do you want to know?Once you get an idea, then it's helpful to go look up things like Methotrexate,NSAIDS,joint injections and such.What you said about sleeping,oh God yes,the JRA can interupt sleep.It's hard to sleep good if your in pain and unfortunatelly lack of sleep can make the JRA worse.Try a heated blanket,on top of the bottom sheet,blanket sleepers or any warm PJ,sleeping bags can help.Keep your daughter as warm as possible duiring the night to help with stiffness.If it gets to bad put her in a hot bath.It is an inconvenience in the middle of the night,but it is well worth it when it brings relief.You will not learn everything over night,but you are on the right track.Knowledge is power,and the more you know the more power you have to help your daughter.Fire those questions away,we are all at your service,more than ready and willing to help you.Looking forward to hearing from you again.My son is systemic and is borderline of being classified as medicated remission.There is not much to tell about him so I really enjoy helping others.Everyone helped me when I was totally lost and scared and fealing like it was the end of the world,so now its my turn to return the favor. Hugs Becki and 4systemic

[Guest guest]

I have briefly, but I am looking for more contacts.

-----Original Message-----From: dbornscheu@... [mailto:dbornscheu@...] Sent: Monday, November 18, 2002 2:11 PM Subject: Re: Information NeededHal- You also asked about getting involved and support groups . . . Have you talked with anyone at your local Arthritis Foundation chapter? Ours here in AZ is great . . . has lots of activities, speakers and a support group. I understand others are not so great. But I'd give it a try. Diane (, 3, pauci)

[Guest guest]

When my son was diagnosised (we live in FL) we flew to NY to see Dr. Lehman. He has a great website with lots of information. www.goldscout.com. Hope this helps.

Information Needed

The JRA was confirmed by a second doctor. She seems to have the one that is four joints or less. I have tons of questions and hope that this group might be able to answer some of them for me:

Web sites? Other groups? etc - I need information, I have been surfing the web for the last four days but if you have a favorite web site please send it to me. I feel like the only way I can keep sane right now is with information.

Does anyone live in Western NY? Is/are there a support group in the Buffalo area?

Sleeping: has been having a harder time sleeping as the JRA has been getting worse... is the normal?

I want to get involved - how? suggestions?

Thank you!

Hal.

-----------------------------------------------------------------RoncoNet, Ronco Communications and Electronics www.RoncoNet.netHal P. Kingsley, DirectorPhone: 716-879-8696 Fax: 716-879-8043 Mobile: 716-480-228684 Grand Island BlvdTonawanda, NY 14150

[Guest guest]

Hi Hal,

I've put together a list of JRA related websites, that you can access through: http://www.geocities.com/gmckin/Links.html

Though I was born and raised in New York (Long Island) I live very far away, now. In Hawaii.

About the sleep issues; yes, very common for many of our children. It can be hard to get a good nights sleep if you are uncomfortable and/or in pain. A warm bath to soak in before bedtime, an electric blanket, a good mattress, careful use of pillows .... these are some of the things I've heard mentioned that seem to help a bit. Hopefully, once a treatment plan is helping to relieve your daughter's pain she'll be able to rest better in the pm.

On the other side of the coin, when my son is flaring he sleeps many more hours than is usual. A very deep slumber. He usually gets about 9 hours of sleep each night but when he's not feeling well he sleeps way beyond this. I'll wake him to eat and to have his meds and often he'll go right back to sleep again. He also feels more tired after taking his weekly methotrexate and sleeps late the next morning, which is why many of us give that med to our kids on a Friday or Saturday night.

Aloha,

Georgina

Information Needed

The JRA was confirmed by a second doctor. She seems to have the one that is four joints or less. I have tons of questions and hope that this group might be able to answer some of them for me:

Web sites? Other groups? etc - I need information, I have been surfing the web for the last four days but if you have a favorite web site please send it to me. I feel like the only way I can keep sane right now is with information.

Does anyone live in Western NY? Is/are there a support group in the Buffalo area?

Sleeping: has been having a harder time sleeping as the JRA has been getting worse... is the normal?

I want to get involved - how? suggestions?

Thank you!

Hal.

[Guest guest]

Hi, my friend said that Wild Oats or Whole Foods Market were a good

source of organic foods. Sprouts may not be in Denver and at least here

has a limited amount of organic vegetables. Henry's is also limited

compared to WO or WFM. Have fun. Diane

mamaterri47 wrote:

>Hi all,

>

>This is way off-topic, but I need some information. I am in the

>beginning planning stage for a trip in October. We will be going to

>Copper Mountain, CO but will be spending a night in Denver first. I

>will be able to prepare food where we are staying, but it's a little

>too far to take much food with us. I will have a little time in

>Denver, and I'd like to buy organic food supplies to take to Copper

>Mountain. Does anyone know of a good health/food store, or a store

>that sells organic produce?

>

>Also, does anyone know of any restaurants in that area that serves

>real food, made on premises from (wishful thinking?) organic foods?

>

>Terri

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Terri:

I was in Denver two weeks ago for 8 days. There is a Whole Foods Market

near the Cherry Creek Shopping District on 1st avenue: directions are

available on the web. I also went to a great vegan restaurant a little off

the beaten path that is run by the Hare Krishnas. I found it by googling

" Denver vegetarian restaurants " . Excellent food, very nice atmosphere, a

regular restaurant in most respects.

Have a great trip,

Bob

_____

mamaterri47 wrote:

>Hi all,

>

>This is way off-topic, but I need some information. I am in the

>beginning planning stage for a trip in October. We will be going to

>Copper Mountain, CO but will be spending a night in Denver first. I

>will be able to prepare food where we are staying, but it's a little

>too far to take much food with us. I will have a little time in

>Denver, and I'd like to buy organic food supplies to take to Copper

>Mountain. Does anyone know of a good health/food store, or a store

>that sells organic produce?

>

>Also, does anyone know of any restaurants in that area that serves

>real food, made on premises from (wishful thinking?) organic foods?

>

>Terri

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Vitamin Cottage Natural Grocers is a Denver-based family-owned health store

chain and has approximately 15 stores in the greater Denver area and other parts

of Colorado www.VitaminCottage.com. They have a mail order website

www.NaturalGrocers.com. Because of the numerous locations in Colorado, it may

be easier/closer and more convenient to shop. We've always been pleased with

their customer service, fresh produce, and product selection. Welcome to

Colorado and enjoy! ****TheLadyN

Bob Winstead <rewinstead@...> wrote:

Terri:

I was in Denver two weeks ago for 8 days. There is a Whole Foods Marketnear the

Cherry Creek Shopping District on 1st avenue: directions are

available on the web. I also went to a great vegan restaurant a little off the

beaten path that is run by the Hare Krishnas. I found it by googling

" Denver vegetarian restaurants " . Excellent food, very nice atmosphere, a regular

restaurant in most respects.

Have a great trip,

Bob

_____

mamaterri47 wrote:

>Hi all,

>

>This is way off-topic, but I need some information. I am in the

>beginning planning stage for a trip in October. We will be going to

>Copper Mountain, CO but will be spending a night in Denver first. I

>will be able to prepare food where we are staying, but it's a little

>too far to take much food with us. I will have a little time in

>Denver, and I'd like to buy organic food supplies to take to Copper

>Mountain. Does anyone know of a good health/food store, or a store

>that sells organic produce?

>

>Also, does anyone know of any restaurants in that area that serves

>real food, made on premises from (wishful thinking?) organic foods?

>

>Terri

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I want to thank everyone for all the wonderful suggestions. It's been a

great help.

I really like this suggestion from because it's a locally-owned,

family-based store. I'm going to try to schedule time to go to several

places, but this will definitely be one of them. It's especially nice to

have a personal recommendation about the freshness, variety and customer

service. Thanks!

Terri

RE: Information needed

Date: Fri, 7 Apr 2006 21:47:57 -0700 (PDT)

Vitamin Cottage Natural Grocers is a Denver-based family-owned health

store chain and has approximately 15 stores in the greater Denver

area and other parts of Colorado www.VitaminCottage.com. They have

a mail order website www.NaturalGrocers.com. Because of the numerous

locations in Colorado, it may be easier/closer and more convenient

to shop. We've always been pleased with their customer service,

fresh produce, and product selection. Welcome to Colorado and enjoy!

****TheLadyN

Bob Winstead <rewinstead@...> wrote:

Terri:

I was in Denver two weeks ago for 8 days. There is a Whole Foods

Marketnear the Cherry Creek Shopping District on 1st avenue:

directions are

available on the web. I also went to a great vegan restaurant a

little off the beaten path that is run by the Hare Krishnas. I found

it by googling

" Denver vegetarian restaurants " . Excellent food, very nice

atmosphere, a regular restaurant in most respects.

Have a great trip,

Bob

_____

mamaterri47 wrote:

>Hi all,

>

>This is way off-topic, but I need some information. I am in the

>beginning planning stage for a trip in October. We will be going to

>Copper Mountain, CO but will be spending a night in Denver first. I

>will be able to prepare food where we are staying, but it's a little

>too far to take much food with us. I will have a little time in

>Denver, and I'd like to buy organic food supplies to take to Copper

>Mountain. Does anyone know of a good health/food store, or a store

>that sells organic produce?

>

>Also, does anyone know of any restaurants in that area that serves

>real food, made on premises from (wishful thinking?) organic foods?

>

>Terri

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Im new to using VCO myself but I find lots of great information by

going to and reading the archives on this forum.

Sue

On Mar 26, 2007, at 7:34 AM, lawrita2002 wrote:

> Hello everyone,

>

> Kindly inform me on the benefit of VCO on diabetics,tratment of

> eczema,candidiasis,and how can i obtain coconut oil from coconut?

>

> Thank you,

> Lawrita

>

>

>

[Guest guest]

If you live in the UK as your e-mail address implies, making coconut

oil would be vey very expensive. All these topics have been covered

numberous times on this list. Have you looked thru the list

archives?

Alobar

On 3/26/07, lawrita2002 <lawrita2002@...> wrote:

> Hello every one,

>

> Kindly inform me on the following:

>

> 1. How do i process coconut oil from coconut?

> 2. How can diabetics benefit from coconut oil

> 3. What is the dosage for both adult and children?

> 4. Can it benefit someone suffering from cadidiasis and how can it be

> applied?

> 5. what about eczema, can it also help?

>

> Thank you.

>

> Lawrita

>

>

>

[Guest guest]

Perhaps we need to change our sign up to this group and let newcomers know

better how to find the initial information that is available here.

All the information requested by several new members is available on the

actual site. Should be have an area marked " newbies " would this be

helpful???

SeaLady

[Guest guest]

Most of the interesting links are in the link sectionat the left of our group

site page. Any member of this group can add to our links and files.If someone

wants to produce an introductory letter and knows how to set it up to

automaticly send to the new members ,that would be a great project.Alobar ,

Carolsea, and IN NC are the moderators here.I dont know about the how

technically minded Alobar and Carol are , but Im rather low tech so any

volunteers are welcome.

I do appreciate everyones patience and willingness to help newbees learn about

coconut oil and coconut products. I once was a newbee too and new to groups and

internet searches and all this- not too long ago so I know how frustrating it

can be to ask a question and get no reply.In fact this group exists because of

another forum's extreme modderation. I would write to the group and my messages

were not even allowed to post. Yep they were basic questions,how much to take

and does it help with problem X.

Thanks

IN NC

KC <kaylee4848@...> wrote:

Perhaps we need to change our sign up to this group and let newcomers know

better how to find the initial information that is available here.

All the information requested by several new members is available on the

actual site. Should be have an area marked " newbies " would this be

helpful???

SeaLady

[Guest guest]

Lawrita,

Most people buy the coconut oil in jars, unless you live where coconuts

are bountiful, even then it is not an easy process to extract your own

oil from the coconut flesh.

The process was explained on the site some weeks ago, if you are

interested, you will have to do a search of old posts.

[Guest guest]

Lawrita,

Most people buy the coconut oil in jars, unless you live where coconuts

are bountiful, even then it is not an easy process to extract your own

oil from the coconut flesh.

The process was explained on the site some weeks ago, if you are

interested, you will have to do a search of old posts.

[Guest guest]

i have buddy who purchase some 250 ml exclusively from the ines. She got

me the brand. (strange aren't they the one who makes Mounds candy?

It was $3 paer 250 ml

<slyan2007@...> wrote:

Lawrita,

Most people buy the coconut oil in jars, unless you live where coconuts

are bountiful, even then it is not an easy process to extract your own

oil from the coconut flesh.

The process was explained on the site some weeks ago, if you are

interested, you will have to do a search of old posts.

Please drive safely!

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