cea Ltd. disks

[Guest guest]

Excuse my ignorance, but if I send this message, does it automatically go to

everyone in the rosacea support? I hope so!

It is a great relief to communicate with others who have rosacea-I've been

feeling very alone for the last year and a half. My name is Kerry, and I'm

a 28-yr-old mother of three (ages 4,3,and1). cea affects my whole face.

My nose swells, my eyes get gritty and red, my cheeks, nose, chin, and

forehead all get red, and I get pimples all over, but mainly on my nose. I

use Metrogel and Benzamycin to control it, but I also have to wear a hat and

be very strict with my diet. Sunscreens disagree with me, and since even

fluorescent lights make my face and eyes red, I wear a sunhat most of the

time. Can anyone suggest lotions with sunscreen that don't make them break

out? I also would like to find a nice powder to wear on special occasions.

I used to use Oil of Olay and Covergirl non-comodogenic respectively, but

the lotion makes me break out, and the powder has oat flour in it (which

isn't any good now that we know our whole family has celiac disease).

Incidently, does anyone else have celiac disease or multiple food allergies?

I've been wondering if there is any connection since food can cause rosacea

problems. For me, sunlight is the worst trigger, then food. I have many

food allergies, and things that I'm allergic to seem to cause as much or

more trouble than the foods I was told to avoid. The worst things for me

which aren't on the regular rosacea list are rice, corn, nuts, and sugar.

If you know what celiac disease is, you now know that I can't eat wheat,

rye, barley, oats, rice, or corn. So what do I eat, you ask? It's even

worse than that! I'm also nursing a highly allergic baby and for her can't

eat dairy, nuts, gluten, rice, corn, apples, white potatoes, citrus, eggs,

carrots, celery... I survive mostly on a few fruits and vegetables, meat,

and specialty breads made from things like buckwheat, amaranth, and sweet

potato flour. I have some interesting recipes if anyone is interested!

I would love to hear other people's stories. I often walk around feeling

like a shadow of my former self, and feel wretched when people make fun of

my hat. Things are much, much better than they were a year ago, but I don't

think I'm fully adjusted yet and wonder if I ever will be. Hello to all of

you out there- it's a real pleasure to " meet " you.

Kerry T-S

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[Guest guest]

PAUL TOWNLEY-SMITH wrote:

> Excuse my ignorance, but if I send this message, does it automatically go to

> everyone in the rosacea support? I hope so!

>

> It is a great relief to communicate with others who have rosacea-I've been

> feeling very alone for the last year and a half. My name is Kerry, and I'm

> a 28-yr-old mother of three (ages 4,3,and1). cea affects my whole face.

> My nose swells, my eyes get gritty and red, my cheeks, nose, chin, and

> forehead all get red, and I get pimples all over, but mainly on my nose. I

> use Metrogel and Benzamycin to control it, but I also have to wear a hat and

> be very strict with my diet. Sunscreens disagree with me, and since even

> fluorescent lights make my face and eyes red, I wear a sunhat most of the

> time. Can anyone suggest lotions with sunscreen that don't make them break

> out? I also would like to find a nice powder to wear on special occasions.

> I used to use Oil of Olay and Covergirl non-comodogenic respectively, but

> the lotion makes me break out, and the powder has oat flour in it (which

> isn't any good now that we know our whole family has celiac disease).

>

> Incidently, does anyone else have celiac disease or multiple food allergies?

> I've been wondering if there is any connection since food can cause rosacea

> problems. For me, sunlight is the worst trigger, then food. I have many

> food allergies, and things that I'm allergic to seem to cause as much or

> more trouble than the foods I was told to avoid. The worst things for me

> which aren't on the regular rosacea list are rice, corn, nuts, and sugar.

> If you know what celiac disease is, you now know that I can't eat wheat,

> rye, barley, oats, rice, or corn. So what do I eat, you ask? It's even

> worse than that! I'm also nursing a highly allergic baby and for her can't

> eat dairy, nuts, gluten, rice, corn, apples, white potatoes, citrus, eggs,

> carrots, celery... I survive mostly on a few fruits and vegetables, meat,

> and specialty breads made from things like buckwheat, amaranth, and sweet

> potato flour. I have some interesting recipes if anyone is interested!

>

> I would love to hear other people's stories. I often walk around feeling

> like a shadow of my former self, and feel wretched when people make fun of

> my hat. Things are much, much better than they were a year ago, but I don't

> think I'm fully adjusted yet and wonder if I ever will be. Hello to all of

> you out there- it's a real pleasure to " meet " you.

>

> Kerry T-S

>

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

>

>

[Guest guest]

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[Guest guest]

Townley ,

Hi,

You might try the Bare minerals powders. They just contain

minerals......nothing else!!!!! They are made specifically for sensitive skin.

Their # is1-.

Good luck........sorry about all your allergies........do antihistamines

help???? I know alot of people have good luck with them that have roscaea.

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[Guest guest]

Kerry

<< Excuse my ignorance, but if I send this message, does it automatically go

to

> everyone in the rosacea support? I hope so! >>

I don't know. <g> This is my first post too.

This is a wonderful idea. I'm glad to see it going. Been on AOL for a few

years and there are two support boards there. It's a big help to share tips

and triggers and whatever. <g>

For me, my worst triggers are sun, heat and chemicals. Stress is no longer a

trigger for me. Don't know why, it just disappeared. Never did drink

alcohol, so I don't know about that one. I only react to about five

chemicals, just my bad luck they seem to be in everything. I have found

taking Claritin really helpful.

I use Cleocin T lotion on the bumps. Zinc oxide and vaseline everyday,

everywhere on my face (my skin is unbelievably dry). I use nizoral or

clotrizole cream when I see the seb/derm kicking up. And Claritin. Daily. I

seem to be in decent control, which is amazing cause I really do have severe

rosacea. Anyway, I real interested in what others are using that works for

them.

Esther

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[Guest guest]

Oh, Kerry, I constantly wear a big, really big, straw hat too. I just think

of it as my contribution to the fashion world. <g>

Esther

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[Guest guest]

Donna,

I'm glad you can use the Bare MInerals!!!! yea!!!!!

Gretchen

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[Guest guest]

Gretchen12@... wrote:

> You might try the Bare minerals powders. They just contain

> minerals......nothing else!!!!! They are made specifically for sensitive skin.

> Their # is1-.

I use Bare Minerals as my only makeup. It covers redness well, and it doesn't

break my face out.

--

Donna

mailto:johnson@...

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

[Guest guest]

I'm glad someone else wears a hat! People keep telling me to use sunscreen,

but all I've tried so far make me break out. I shall try to think of it as

being fashionable! This summer I found a good straw hat that ties on-a

necessity in our windy climate, but I'm always looking for good hats for all

weather, so if anyone is aware of a particular brand and style that works

well, please let me know. I should mention that I seem to have kind of a

small head and many hats don't fit.

Kerry

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

[Guest guest]

Hi Debbie,

I found your message on the e-mail while I was checking my

e-correspondence this afternoon.

I am curious about your treatment and history, as I am having excellent

luck with the cea Ltd. disks; better luck than with Cleocin, Retin-A,

doxycycline (allergic to), tetracycline (just OK) and erythromycin, which

didn't seem to help at all (no difference in skin).

An interesting effect occured with me quite recently. I had been placed

on a prescription for Fosamax since I'm showing some " bone thinning " in my

DEXA scans. I must be allergic to the Fosamax--I thought, at first, I

was having a really terrible " flare-up " of rosacea; then I figured that

the " flare up " began about the time I started this prescription. Within

two days of quitting the medication, the blobby hivelike rash on my face

was beginning to look a lot better; within a week, it was 100% gone. I'd

be interested in knowing if allergy to certain meds have been mistaken for

a rosacea flare up.

The disks, I think, are helping to make less noticeable, the small

capillaries too! This is great because I suspect those little veins act

as " fertilizer " for outcroppings of zits--a personal " Carol " theory, only.

> I did have good luck with the cea Ltd. disks and was wondering if anyone

else did. I would be willing to post my experience about my rosacea history of

medications, " the good, the bad and the ugly " as it were, if anyone is

interested.

> Debbie.

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

>

>

>

[Guest guest]

Carol,

Hope I got your name right.

For me, my allergies are part of my triggers. The chemicals that I tested

allergic to are also the main triggers for my rosacea. For some people, it

seems to be more food related. I have most of the traditional rosacea

triggers (heat, sun, yadda, yadda) but I have these wacko ones too - chlorine,

urea, etc. So it makes sense to me that the script you were using could cause

a flare.

The cea Ltd disks are interesting. I haven't tried them but keep hearing

decent stuff about them. Only thing to watch is that they can be drying.

Esther

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

[Guest guest]

From: Self <Single-user mode>

To: " PAUL TOWNLEY-SMITH "

Subject: Re: Re: cea Ltd. disks

Date: Sat, 14 Nov 1998 01:13:39

>

> Excuse my ignorance, but if I send this message, does it automatically go

> to everyone in the rosacea support? I hope so!

sure does, there are 30 people on the list at the moment. I'm hoping that

more will join over time so am putting the mailing list in all the search

engines. There seems to be so little out there for skin diseases on the

internet. Does anyone out there know if there are some internal aol mailing

list databases that I could add this one to ?

> I would love to hear other people's stories. I often walk around feeling

> like a shadow of my former self, and feel wretched when people make fun of

> my hat. Things are much, much better than they were a year ago, but I

> don't think I'm fully adjusted yet and wonder if I ever will be. Hello to

> all of you out there- it's a real pleasure to " meet " you.

I got quite used to people pointing out my red nose over the years. Got used

to, but didn't like. Because of the climate here you often see people who

are genuinely sunburnt, so people just assumed that I didn't know about

sunscreens. Of course I wore them but they didn't stop the red colour. I

have had rosacea for about 8 years, I'm 29. I even had to face the prospect

of getting married, and being in all the wedding photos with a rudolph

appendage. Looking at some of the photos on the internet, especially on the

medical pages and metrogel advertising page made me feel that there were

lots of people out there worse off than me, but still I felt pretty

miserable on and off.

kind regards,

davidp.

--

J. Pascoe, pascoedj@..., http://fly.to/davidp

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

[Guest guest]

Re: cea Ltd. disks

Carol,

Hope I got your name right.

For me, my allergies are part of my triggers. The chemicals that I tested

allergic to are also the main triggers for my rosacea. For some people, it

seems to be more food related. I have most of the traditional rosacea triggers

(heat, sun, yadda, yadda) but I have these wacko ones too - chlorine, urea, etc.

So it makes sense to me that the script you were using could cause a flare.

The cea Ltd disks are interesting. I haven't tried them but keep hearing

decent stuff about them. Only thing to watch is that they can be drying.

Esther

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

[Guest guest]

Hi

Hey! appreciate hearing other folks' feelings about this. There are

" flare-up " days where all I want to do is pull the covers over my head

(face, to be specific!!!) and stay in bed where I won't have to face

anyone!

Thanks for sharing!

PS--have had good luck, so far, with the rosacea-ltd disks!

Carol

> From: Self <Single-user mode>

> To: " PAUL TOWNLEY-SMITH "

> Subject: Re: Re: cea Ltd. disks

> Date: Sat, 14 Nov 1998 01:13:39

>

> >

>

> > Excuse my ignorance, but if I send this message, does it automatically go

> > to everyone in the rosacea support? I hope so!

>

> sure does, there are 30 people on the list at the moment. I'm hoping that

> more will join over time so am putting the mailing list in all the search

> engines. There seems to be so little out there for skin diseases on the

> internet. Does anyone out there know if there are some internal aol mailing

> list databases that I could add this one to ?

>

> > I would love to hear other people's stories. I often walk around feeling

> > like a shadow of my former self, and feel wretched when people make fun of

> > my hat. Things are much, much better than they were a year ago, but I

> > don't think I'm fully adjusted yet and wonder if I ever will be. Hello to

> > all of you out there- it's a real pleasure to " meet " you.

>

> I got quite used to people pointing out my red nose over the years. Got used

> to, but didn't like. Because of the climate here you often see people who

> are genuinely sunburnt, so people just assumed that I didn't know about

> sunscreens. Of course I wore them but they didn't stop the red colour. I

> have had rosacea for about 8 years, I'm 29. I even had to face the prospect

> of getting married, and being in all the wedding photos with a rudolph

> appendage. Looking at some of the photos on the internet, especially on the

> medical pages and metrogel advertising page made me feel that there were

> lots of people out there worse off than me, but still I felt pretty

> miserable on and off.

>

> kind regards,

> davidp.

> --

> J. Pascoe, pascoedj@..., http://fly.to/davidp

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

>

>

>

[Guest guest]

In a message dated 11/18/98 10:16:54 PM Eastern Standard Time,

pcohen@... writes:

<< My eyes are

miserable almost always. I've been on 100mg/daily of doxycycline for 15

months now & I use the eye scrub & an antibiotic eye ointment. >>

Have you tryed the warm eye compresses?

Esther

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

[Guest guest]

Thanks for the info Skylar. Where did you get your hat? Do you know where

I might be able to get one? I have ocular rosacea too, and a perpetually

pink but relatively normal looking face (most of the time). I find that the

main thing that causes problems with my eyes is food that I'm allergic to

(especially corn) and something that's in clothing stores (probably some

kind of chemical). If I avoid these things, my eyes don't hurt, but if I

shop for too long or cheat on my diet, ow, ow, ow...

The things that are bothering me the most these days are that the end of my

nose swells bigtime if I eat the wrong thing, and the skin between my nose

and mouth kind of puckers which changes the look of my mouth. I find this

really distressing and wish I could find a way to stop it. (metrogel and

benzamycin seem to control everything else pretty well) Problem is, it

seems to be food that causes it, and my physician says he's going to string

me up if I lose any more weight. Has anybody else been through this?

Suggestions...please!

Kerry

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[Guest guest]

In a message dated 11/19/98 12:21:48 AM Central Standard Time,

pcohen@... writes:

> 2) be on the web for every spammer in the world to

> collect your address.

I am a systems administrator and Network Engineer, when I get spam I have a

script that send them 1,000 email a minute until they call my phone to stop!

It fills their hard drive fast :-) locks up their system! Fun fun fun!

Needless to say I almost get any spam now after doing that for about a year

:-)

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

[Guest guest]

I'm very intrigued by this corn & corn syrup

connection that people seem

to be making. It's the first I've heard of this as a trigger

-- I drink

soda (not cola) during the day & I'm wondering if I should switch

to

diet (although Nutrasweet is probably a trigger, too!).

Skylar

Skylar-

Unfortunately, Nutrasweet is derived from corn. I tried it because

I had problems with sugar and it bothered me even worse.

For the past year, the only thing I drink is water. Everything else

seems to aggravate the rosacea.

Donna

[Guest guest]

In a message dated 11/19/98 3:59:05 PM Central Standard Time,

gardndmg@... writes:

> Unfortunately, Nutrasweet is derived from corn

I thought is was the binding of the molecule in milk and bananas?

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

[Guest guest]

I ordered these a few days ago and received them yesterday. Does anyone who

has used the disks have any tips? I thought I'd start this morning.

Donna J.

mailto:johnson@...

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[Guest guest]

I want to thank folks in this e-group for mentioning ocular rosacea. My

opthalmology check-up is due in February, and I positively must ask about

this aspect of the problem. I've been told I have " dry eyes " and that all

ocular tissue is " healthy " --well now, how come my eyes always feel as if I

want to tear them out of my skull??? My opthalmologist recommended I have

the " plug-the-tear-ducts " type surgery. I think this is a little extreme!

Best drops I've found so far: " Vive Drops " sold at Walgreens; and one

called " Oxy Drops " from Gero Vita Int'l, out of Canada (expensive!!!)

Carol

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[Guest guest]

Carol,

The advice I got was to use preservative-free artificial tears. Is this what you're using? I was also told that oral antibiotics were needed if you really have trouble with this, because it can lead to vision loss. Mine comes and goes, and since I'm nursing a baby I can't use the antibiotics right now. I have found that certain foods and chemicals are the cause of the eye grittiness for me, so you might try to take note of possible triggers. Good luck.

Kerry