Re: Hello and request for assistance, from interested newcomer

November 29, 2001

a,

My answers are written below...

Brady Barrows

On Thursday, November 29, 2001, at 03:38 PM, alecto_fury@...

wrote:

> Greetings all -

>

> My name is a Friedman, and let me apologize right off the top.

> I'm a list owner and community builder myself and know how annoying

> constant requests for help are. :-) I have read the List Highlights,

> and need to ask a question or two.

>

> I'm not a rosacea sufferer myself, I'm a professional researcher and

> have been asked to do some research into rosacea. This list seems like

> the number one community resource and I've been reading it with

> interest. Here's some questions that I'd love to have a few answers

> for, but please don't answer if this kind of thing annoys. :-)

>

> In general, how aware were you of rosacea before you were diagnosed?

Zero knowledge about rosacea, until my dermatologist told me I had it.

>

> Did you realize you had rosacea or did your doctor tell you?

Same answer as above.

>

> Once you realized you had rosacea, how effective did you find the

> treatments that your doctor prescribed?

tetracycline and metrogel worked to control my rosacea, fairly well, but

sometimes breakouts still occurred.

>

> If this sounds too much like market research, I apologize...I'm just a

> humble researcher trying to fill a request. LOL

>

> Thanks again for your time and cooperation!

>

> Cheers,

>

> a Friedman

>

> --

> Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html)

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to rosacea-support-

> unsubscribe

>

November 29, 2001

a,

After noticing tiny bumps on forehead that would not go away for over a year, I

looked for info on the web and then diagnosed myself with rosacea. I went to

three derms and an allergist after I made my diagnosis. Two derms said I did

NOT have rosacea and proceeded to give me products that irritated the hell out

of my skin, and the third doc said I might have rosacea and was not sure. The

allergist had no idea what was wrong with me.

I have found derms to me more than lacking in this area and some to be even

rude. None of the treatments they gave me were effective. This is what I was

prescribed:

1) Cortisone Cream

2) Noritate

3) MetroGel

4) Alpha Hydroxy Acid -high concentrations

5) AntiBiotics

After becoming increasingly frustrated, I searched on-line and found this group.

I also sent away for some info from the National cea Society (and by the

way, some of their advise is even erroneous). The info I have received from

this group has given me the largest improvement in my skin and my forehead is

now 95% clear of the papules. My remaining issue is the redness on my cheeks

and broken blood vessels on my nose.

Good Luck,

Michele

Hello and request for assistance, from interested newcomer

Greetings all -

My name is a Friedman, and let me apologize right off the top.

I'm a list owner and community builder myself and know how annoying

constant requests for help are. :-) I have read the List Highlights,

and need to ask a question or two.

I'm not a rosacea sufferer myself, I'm a professional researcher and

have been asked to do some research into rosacea. This list seems like

the number one community resource and I've been reading it with

interest. Here's some questions that I'd love to have a few answers

for, but please don't answer if this kind of thing annoys. :-)

In general, how aware were you of rosacea before you were diagnosed?

Did you realize you had rosacea or did your doctor tell you?

Once you realized you had rosacea, how effective did you find the

treatments that your doctor prescribed?

If this sounds too much like market research, I apologize...I'm just a

humble researcher trying to fill a request. LOL

Thanks again for your time and cooperation!

Cheers,

a Friedman

--

Please read the list highlights before posting to the whole group

(http://rosacea.ii.net/toc.html)

See http://www.drnase.com for info on his recently published book.

To leave the list send an email to rosacea-support-unsubscribe

November 29, 2001

In a message dated 11/29/01 8:12:58 PM Eastern Standard Time,

alecto_fury@... writes:

> In general, how aware were you of rosacea before you were diagnosed?

I didn't know a thing about it. I first saw information on it during a

commercial during this past years cea Awareness month.

>

> Did you realize you had rosacea or did your doctor tell you?

Went to my derm for an annual skin cancer " look me over " . And mentioned this

rash I get on occasion on my eyelids. After a close-up review of my face, I

was told I " have this skin condition woman of child bearing age get " . It was

never given a name, never any education, and I walked out of his office with

a prescription for cortisone. It wasn't until 6-7 years later that the

papules developed, went to another derm, was prescribed noritate. Still, it

was never given a name, nor any education. It was my neighbor, a nurse

practitioner, who suggested and questioned whether it was rosacea. Lots of

time wasted! And, oh, the damage to my skin by not being aware of my

condition, and adjusting my life accordingly ~ changing my skin products and

arranging for all the lifestyle changes this condition requires.

>

> Once you realized you had rosacea, how effective did you find the

> treatments that your doctor prescribed?

I was as compliant to my prescribed treatment as one can be, and I saw no

results after 3 months of not missing one dose of medication or topical

creme. Is wasn't until I tried a more natural product I was told about from

this great group I belong to, did I see any improvement. Any and all

education I have learned about this condition has been through our group, Dr.

Nase, and the companies who are supporting us with their products over the

internet. And I don't mean the pharmaceutical prescription required

companies. The pharmaceutical companies' help and information has been

useful albeit minimal. But, by far, our rosacea group, and our wonderful,

dedicated guru, Dr. Nase has provided more helpful information than anyone.

I even leant my cea bible, Dr. Nases book, to my dermatologist. Felt it

was my duty to educate her!!

For whom are you doing research for?

>

Thanks for your interest.

~~~Beth~~~

November 29, 2001

In a message dated 11/29/01 8:12:58 PM Eastern Standard Time,

alecto_fury@... writes:

> If this sounds too much like market research, I apologize...I'm just a

> humble researcher trying to fill a request. LOL

>

> Thanks again for your time and cooperation!

>

a,

May I add something to my last post. I am of the medical profession myself,

and have always believed in conventional treatment for medical conditions. I

was educated in a scientific manner to believe that if you understand how the

body works, that there are logical answers to medical problems and one should

have great faith in conventional medical treatments. A sort-of 2 + 2 will

always = 4 mentality to medicine and the human body. As far as I believed,

holistic treatment to medical conditions were available, but there really

just to pacify. Boy have my eyes been opened with this diagnosis and fight

to treat rosacea. For the first time, I feel that medicine has failed me in

the treatment of this disease. The dermatologist are ill-informed, and my

opinion after my personal experience and reading about many others, is that

we are pests that just won't get better, nor go away. They go about treating

us, initially, with the " textbook " treatment regime ~ some sort of

metro-products and either tetracycline or minocin antibiotics. If that

doesn't work.....most of them are at a loss. Conventional medicine only. By

far, in my opinion, what is lacking with these medical visits is education,

education, education. Why didn't anybody tell me about this disease? Tell

me what I need to do for myself? Offer the address of this support group?

Tell me about non-conventional treatments? Vitamins, natural skin

products/hair products? Etc.....

Everyone seems as though they are grasping for straws......patients,

dermatologists, researchers, pharmaceutical companies. Trying to provide

treatments to something no one really understands. Dr. Nase feels as though

this is a vascular problem. O.K. A vascular problem that manifests itself on

the exterior of the body. But, for heavens sake, what does that mean

systemically??? I mean, if we are only seeing the exterior results of a

vascular problem......what is it doing to the rest of the vascular system?

Also, there doesn't seem to be any coordination between health care providers

on this topic. Some people are seeking treatment from opthamologist, some

from derms, some from Dr's providing photoderm or laser treatments, some from

internists/family practitioners, some even from gastroenterologists. No one

knows what the other hand is doing. No continuity of care between them. My

theory is that they just do not understand it enough to figure out what to

tell us. All the treatment seems to go towards treating the symptoms only,

because the cause is unknown. Gosh, isn't there a handful of them, besides

Dr. Nase, who thinks, " none of this stuff I keep giving these peoples is

working!, and that's not good enough? Why isn't it working and how can I

understand it better to provide effective treatment? " Or are they all

expecting someone else to do something about it. Well, who are those people

anyway? Where are they? I find myself walking around, looking at peoples

faces, and diagnosing 1/4 of the people I look at with cea. Are they

aware of it? Are they doing anything to help themselves with it? Because I

feel that it is 90% our own responsibility to seek improvement, as for the

first time, I feel abandoned by medicine and what it can offer me. And,

being a nurse, I am ashamed!

~~vent, vent, vent~~~

~~~Beth~~~

November 30, 2001

beth,

your insight into this malaise is thoughtful and why this group is

formed. if a cause for rosacea was found, there may be a way to treat

it into submission, but alas, too many theories and triggers are

suggested and not any real solutions, only a bewildering list of

treatments for the symptoms.....and as we read more comments each day,

this list of treatments grows!

brady barrows

On Friday, November 30, 2001, at 07:04 AM, Begardella@... wrote:

> In a message dated 11/29/01 8:12:58 PM Eastern Standard Time,

> alecto_fury@... writes:

>

>> If this sounds too much like market research, I apologize...I'm just a

>> humble researcher trying to fill a request. LOL

>>

>> Thanks again for your time and cooperation!

>>

> a,

> May I add something to my last post. I am of the medical profession

> myself,

> and have always believed in conventional treatment for medical

> conditions. I

> was educated in a scientific manner to believe that if you understand

> how the

> body works, that there are logical answers to medical problems and one

> should

> have great faith in conventional medical treatments. A sort-of 2 + 2

> will

> always = 4 mentality to medicine and the human body. As far as I

> believed,

> holistic treatment to medical conditions were available, but there

> really

> just to pacify. Boy have my eyes been opened with this diagnosis and

> fight

> to treat rosacea. For the first time, I feel that medicine has failed

> me in

> the treatment of this disease. The dermatologist are ill-informed, and

> my

> opinion after my personal experience and reading about many others, is

> that

> we are pests that just won't get better, nor go away. They go about

> treating

> us, initially, with the " textbook " treatment regime ~ some sort of

> metro-products and either tetracycline or minocin antibiotics. If that

> doesn't work.....most of them are at a loss. Conventional medicine

> only. By

> far, in my opinion, what is lacking with these medical visits is

> education,

> education, education. Why didn't anybody tell me about this disease?

> Tell

> me what I need to do for myself? Offer the address of this support

> group?

> Tell me about non-conventional treatments? Vitamins, natural skin

> products/hair products? Etc.....

> Everyone seems as though they are grasping for straws......patients,

> dermatologists, researchers, pharmaceutical companies. Trying to

> provide

> treatments to something no one really understands. Dr. Nase feels as

> though

> this is a vascular problem. O.K. A vascular problem that manifests

> itself on

> the exterior of the body. But, for heavens sake, what does that mean

> systemically??? I mean, if we are only seeing the exterior results of a

> vascular problem......what is it doing to the rest of the vascular

> system?

> Also, there doesn't seem to be any coordination between health care

> providers

> on this topic. Some people are seeking treatment from opthamologist,

> some

> from derms, some from Dr's providing photoderm or laser treatments,

> some from

> internists/family practitioners, some even from gastroenterologists.

> No one

> knows what the other hand is doing. No continuity of care between

> them. My

> theory is that they just do not understand it enough to figure out what

> to

> tell us. All the treatment seems to go towards treating the symptoms

> only,

> because the cause is unknown. Gosh, isn't there a handful of them,

> besides

> Dr. Nase, who thinks, " none of this stuff I keep giving these peoples is

> working!, and that's not good enough? Why isn't it working and how

> can I

> understand it better to provide effective treatment? " Or are they all

> expecting someone else to do something about it. Well, who are those

> people

> anyway? Where are they? I find myself walking around, looking at

> peoples

> faces, and diagnosing 1/4 of the people I look at with cea. Are

> they

> aware of it? Are they doing anything to help themselves with it?

> Because I

> feel that it is 90% our own responsibility to seek improvement, as for

> the

> first time, I feel abandoned by medicine and what it can offer me. And,

> being a nurse, I am ashamed!

> ~~vent, vent, vent~~~

> ~~~Beth~~~

>

November 30, 2001

In a message dated 11/29/2001 8:13:05 PM Eastern Standard Time,

alecto_fury@... writes:

Hi a, here are the answers based on my experience.

In general, how aware were you of rosacea before you were diagnosed?

> I was aware due to an infomercial I saw on TV.

>

> Did you realize you had rosacea or did your doctor tell you?

> I realized it by seeing the infomercial. The first derm I went to

> incorrectly diagnosed me. It wasn't until about 6 months later (when it

> was of course much worse) that I was correctly diagnosed by a second

> dermatologist.

> Once you realized you had rosacea, how effective did you find the

> treatments that your doctor prescribed?

> Initially, very effective. I was put on Noritate and 100 mg of

minocycline. However, lately it seems to be getting a little worse. I've

had rosacea for about 3 yrs now.

Thanks for taking an interest!

Donna

November 30, 2001

I agree TOTALLY with you.

Re: Hello and request for assistance, from interested

newcomer

> In a message dated 11/29/01 8:12:58 PM Eastern Standard Time,

> alecto_fury@... writes:

>

> > If this sounds too much like market research, I apologize...I'm just a

> > humble researcher trying to fill a request. LOL

> >

> > Thanks again for your time and cooperation!

> >

> a,

> May I add something to my last post. I am of the medical profession

myself,

> and have always believed in conventional treatment for medical conditions.

I

> was educated in a scientific manner to believe that if you understand how

the

> body works, that there are logical answers to medical problems and one

should

> have great faith in conventional medical treatments. A sort-of 2 + 2 will

> always = 4 mentality to medicine and the human body. As far as I

believed,

> holistic treatment to medical conditions were available, but there really

> just to pacify. Boy have my eyes been opened with this diagnosis and

fight

> to treat rosacea. For the first time, I feel that medicine has failed me

in

> the treatment of this disease. The dermatologist are ill-informed, and my

> opinion after my personal experience and reading about many others, is

that

> we are pests that just won't get better, nor go away. They go about

treating

> us, initially, with the " textbook " treatment regime ~ some sort of

> metro-products and either tetracycline or minocin antibiotics. If that

> doesn't work.....most of them are at a loss. Conventional medicine only.

By

> far, in my opinion, what is lacking with these medical visits is

education,

> education, education. Why didn't anybody tell me about this disease?

Tell

> me what I need to do for myself? Offer the address of this support group?

> Tell me about non-conventional treatments? Vitamins, natural skin

> products/hair products? Etc.....

> Everyone seems as though they are grasping for straws......patients,

> dermatologists, researchers, pharmaceutical companies. Trying to provide

> treatments to something no one really understands. Dr. Nase feels as

though

> this is a vascular problem. O.K. A vascular problem that manifests itself

on

> the exterior of the body. But, for heavens sake, what does that mean

> systemically??? I mean, if we are only seeing the exterior results of a

> vascular problem......what is it doing to the rest of the vascular system?

> Also, there doesn't seem to be any coordination between health care

providers

> on this topic. Some people are seeking treatment from opthamologist, some

> from derms, some from Dr's providing photoderm or laser treatments, some

from

> internists/family practitioners, some even from gastroenterologists. No

one

> knows what the other hand is doing. No continuity of care between them.

My

> theory is that they just do not understand it enough to figure out what to

> tell us. All the treatment seems to go towards treating the symptoms

only,

> because the cause is unknown. Gosh, isn't there a handful of them,

besides

> Dr. Nase, who thinks, " none of this stuff I keep giving these peoples is

> working!, and that's not good enough? Why isn't it working and how can I

> understand it better to provide effective treatment? " Or are they all

> expecting someone else to do something about it. Well, who are those

people

> anyway? Where are they? I find myself walking around, looking at peoples

> faces, and diagnosing 1/4 of the people I look at with cea. Are they

> aware of it? Are they doing anything to help themselves with it? Because

I

> feel that it is 90% our own responsibility to seek improvement, as for the

> first time, I feel abandoned by medicine and what it can offer me. And,

> being a nurse, I am ashamed!

> ~~vent, vent, vent~~~

> ~~~Beth~~~

>

November 30, 2001

> In general, how aware were you of rosacea before you

> were diagnosed?

>

> Did you realize you had rosacea or did your doctor

> tell you?

Finally realizing that the symptoms I was experiencing

did not correspond to other skin disorders, I did a

search on the internet and found some info on rosacea.

Didn't know what it was before. Sounded like it

matched my experiences best. But it was still a

hunch. I took my complaints to my GP about 1-2 weeks

later, and she confirmed my suspicion, giving me a

diagnosis that was eventually corroborated by a derm.

She was surprised to see it in someone my age (25 at

the time).

> Once you realized you had rosacea, how effective did

> you find the

> treatments that your doctor prescribed?

I've had bad experiences with topical prescriptives in

the past, so I told my doc flat out that I wouldn't

use Metro or Noritate. I used oral minocycline, which

was moderately effective in controlling the

inflammation and papules. Not something to use over

the long-term, though. I did cave and tried Noritate

briefly, and it exacerbated my symptoms.

I eventually had IPL (intense pulsed light, or

photoderm) procedures done. All the info on this

procedure came from this group and the clinic who

performed the procedure. This was not recommended by

my regular derm, but my GP supported my decision.

Best thing I could've done!

Good luck with your research. We're always happy to

help, if it means opening up wider discussion of our

condition!

__________________________________________________

November 30, 2001

Beth,

I agree completely with your response. I'm interested in learning what

product(s)

helped you.

a

Re: Hello and request for assistance, from interested

newcomer

>In a message dated 11/29/01 8:12:58 PM Eastern Standard Time,

>alecto_fury@... writes:

>

>> If this sounds too much like market research, I apologize...I'm just a

>> humble researcher trying to fill a request. LOL

>>

>> Thanks again for your time and cooperation!

>>

>a,

>May I add something to my last post. I am of the medical profession myself,

>and have always believed in conventional treatment for medical conditions. I

>was educated in a scientific manner to believe that if you understand how the

>body works, that there are logical answers to medical problems and one should

>have great faith in conventional medical treatments. A sort-of 2 + 2 will

>always = 4 mentality to medicine and the human body. As far as I believed,

>holistic treatment to medical conditions were available, but there really

>just to pacify. Boy have my eyes been opened with this diagnosis and fight

>to treat rosacea. For the first time, I feel that medicine has failed me in

>the treatment of this disease. The dermatologist are ill-informed, and my

>opinion after my personal experience and reading about many others, is that

>we are pests that just won't get better, nor go away. They go about treating

>us, initially, with the " textbook " treatment regime ~ some sort of

>metro-products and either tetracycline or minocin antibiotics. If that

>doesn't work.....most of them are at a loss. Conventional medicine only. By

>far, in my opinion, what is lacking with these medical visits is education,

>education, education. Why didn't anybody tell me about this disease? Tell

>me what I need to do for myself? Offer the address of this support group?

>Tell me about non-conventional treatments? Vitamins, natural skin

>products/hair products? Etc.....

>Everyone seems as though they are grasping for straws......patients,

>dermatologists, researchers, pharmaceutical companies. Trying to provide

>treatments to something no one really understands. Dr. Nase feels as though

>this is a vascular problem. O.K. A vascular problem that manifests itself on

>the exterior of the body. But, for heavens sake, what does that mean

>systemically??? I mean, if we are only seeing the exterior results of a

>vascular problem......what is it doing to the rest of the vascular system?

>Also, there doesn't seem to be any coordination between health care providers

>on this topic. Some people are seeking treatment from opthamologist, some

>from derms, some from Dr's providing photoderm or laser treatments, some from

>internists/family practitioners, some even from gastroenterologists. No one

>knows what the other hand is doing. No continuity of care between them. My

>theory is that they just do not understand it enough to figure out what to

>tell us. All the treatment seems to go towards treating the symptoms only,

>because the cause is unknown. Gosh, isn't there a handful of them, besides

>Dr. Nase, who thinks, " none of this stuff I keep giving these peoples is

>working!, and that's not good enough? Why isn't it working and how can I

>understand it better to provide effective treatment? " Or are they all

>expecting someone else to do something about it. Well, who are those people

>anyway? Where are they? I find myself walking around, looking at peoples

>faces, and diagnosing 1/4 of the people I look at with cea. Are they

>aware of it? Are they doing anything to help themselves with it? Because I

>feel that it is 90% our own responsibility to seek improvement, as for the

>first time, I feel abandoned by medicine and what it can offer me. And,

>being a nurse, I am ashamed!

>~~vent, vent, vent~~~

>~~~Beth~~~

>

December 1, 2001

Here, here Beth! I completely and aggressively support your point of view. We

need more Dr. Nases!

~Michele