Re: re: rosacea PHOTODERM and SYMPTOMS

[Guest guest]

You're absolutely right, Patty. I think the perception of rosacea by

the dermatologist community and the reality of people with it don't

jive. I'm going to e-mail the groups you mention about this.

Thanks,

Matija

> For everyone in the group:

>

> Some thoughts.....

>

> Why isn't insurance covering photoderm or laser treatments? When I

asked if

> it helped burning, pain, etc. and found out it did, insurance is

supposed to

> pay for cosmetic surgery if it is done for medical reasons. It

sounds as if

> it helps halt the progression of this disease.

>

> Why don't most doctors, including dermatologists, know that rosacea

can

> become this severe?

>

> Why did my doctors only hand me a pamphlet (same one from 3

different

> M.D.'s) and put out by Galderma - makers of the Metrogel/lotion

products-

> when they told me about rosacea? I'm sure many of you got the same

> pamphlet. It pretty much says that if you take the antibiotics and

apply

> topicals, it can be controlled. OBVIOUSLY THAT'S NOT THE CASE.

>

> Why did my doctors overwhelmingly suggest my symptoms were from

stress - not

> rosacea - and I should see a psychologist/psychiatrist (which I

did)?

>

> Again--if I hadn't found this group--and finally some help--I can

only

> imagine the depression I'd be in with this 2nd flare up.

>

> WE NEED TO TAKE ACTION.

>

> Perhaps Dr. Sy can help with a suggestion. I was thinking if we

all emailed

> the National cea Society or the American Dermatologic Assoc.

and called

> these glaring discrepancies to their attention, they can do

something.

> Wouldn't it be these groups who would be responsible for the

education that

> is needed--educating patients, doctors and insurance companies? I

looked

> through much of the literature on the cea Society's website and

didn't

> even see the description of my symptoms--the burning overall,

including

> stomach. But it does seem to be happening to others as well.

>

> I have a feeling that most of us are here because we are trying to

come to

> grips with rather severe cases of rosacea. Part of the reason it

may be

> severe is most (if not all of us) had no idea it could get like

this and

> really were not educated more about it. How many were complaining

to

> doctors and NOT getting the proper advice? For my part, I do see

good

> doctors; I just don't think they have been educated about the

severity of

> it. I've been making a mental comparison to arthritis and rosacea-

-both

> seem to be so characterized by inflammation--only one is bone and

the other

> skin. I do know inflammation, uncontrolled, worsens arthritis. If

that is

> the case with rosacea--insurance should give mandatory coverage.

But we

> need a professional group that will give voice to all of us.

>

> Dr. Sy, or any other medical professional, please advise. Thanks

everyone

> in advance and I apologize if this is too long-winded.

>

> Patty

[Guest guest]

In a message dated 4-23-00 2:50:14 PM Eastern Daylight Time,

jgreenbaum@... writes:

<< Why did my doctors only hand me a pamphlet (same one from 3 different

M.D.'s) and put out by Galderma - makers of the Metrogel/lotion products-

when they told me about rosacea? I'm sure many of you got the same >>

The pamphlet I got was a few years older than the one your talking about...it

had pictures of deformed persons in it...I took one look at those faces (at

home in my kitchen) and had my first panic attack...I had to put it in the

garbage immediately! I had nightmares...that I would soon look just like

those people. I wish the doc had never given me that particular

pamphlet...he should have them burned! For a newly diagnosed patient it

takes you from hope to a state of hopelessness in seconds.

Darlene

GO WINGS

[Guest guest]

The pamphlet I received was from about six years ago. I think it had

" before " pictures of people with severe rosacea and then their

" after "

pictures after they were treated with Metrogel and oral antibiotics.

They did look better. I agree that the " before " pictures were'nt

easy

to look at.

Matija

> In a message dated 4-23-00 2:50:14 PM Eastern Daylight Time,

> jgreenbaum@d... writes:

>

> << Why did my doctors only hand me a pamphlet (same one from 3

different

> M.D.'s) and put out by Galderma - makers of the Metrogel/lotion

products-

> when they told me about rosacea? I'm sure many of you got the

same

>>

>

> The pamphlet I got was a few years older than the one your talking

about...it

> had pictures of deformed persons in it...I took one look at those

faces (at

> home in my kitchen) and had my first panic attack...I had to put it

in the

> garbage immediately! I had nightmares...that I would soon look

just

like

> those people. I wish the doc had never given me that particular

> pamphlet...he should have them burned! For a newly diagnosed

patient it

> takes you from hope to a state of hopelessness in seconds.

>

> Darlene

> GO WINGS

[Guest guest]

As an aside, I think my face would have looked like those people in

the pamphlet if it weren't for Drs. Sy and Nase. I had no idea about

how important stopping facial inflammation was in the process of

calming down rosacea. Also, I had no clue about applying oils to my

face or zinc oxide. As I've said before, I would have been a

frustrated red-faced person still applying Metrogel, wondering what

was wrong with me since it didn't work at all.

Matija

>

>

> > In a message dated 4-23-00 2:50:14 PM Eastern Daylight Time,

> > jgreenbaum@d... writes:

> >

> > << Why did my doctors only hand me a pamphlet (same one from 3

> different

> > M.D.'s) and put out by Galderma - makers of the Metrogel/lotion

> products-

> > when they told me about rosacea? I'm sure many of you got the

> same

> >>

> >

> > The pamphlet I got was a few years older than the one your

talking

> about...it

> > had pictures of deformed persons in it...I took one look at those

> faces (at

> > home in my kitchen) and had my first panic attack...I had to put

it

> in the

> > garbage immediately! I had nightmares...that I would soon look

> just

> like

> > those people. I wish the doc had never given me that particular

> > pamphlet...he should have them burned! For a newly diagnosed

> patient it

> > takes you from hope to a state of hopelessness in seconds.

> >

> > Darlene

> > GO WINGS

[Guest guest]

Matija,

Did you use oral antiobiotics initially to get your rosacea under control or

have

you always used more " natural " medications?

a

Re: re: rosacea PHOTODERM and SYMPTOMS

>As an aside, I think my face would have looked like those people in

>the pamphlet if it weren't for Drs. Sy and Nase. I had no idea about

>how important stopping facial inflammation was in the process of

>calming down rosacea. Also, I had no clue about applying oils to my

>face or zinc oxide. As I've said before, I would have been a

>frustrated red-faced person still applying Metrogel, wondering what

>was wrong with me since it didn't work at all.

>

>Matija

>>

>>

>> > In a message dated 4-23-00 2:50:14 PM Eastern Daylight Time,

>> > jgreenbaum@d... writes:

>> >

>> > << Why did my doctors only hand me a pamphlet (same one from 3

>> different

>> > M.D.'s) and put out by Galderma - makers of the Metrogel/lotion

>> products-

>> > when they told me about rosacea? I'm sure many of you got the

>> same

>> >>

>> >

>> > The pamphlet I got was a few years older than the one your

>talking

>> about...it

>> > had pictures of deformed persons in it...I took one look at those

>> faces (at

>> > home in my kitchen) and had my first panic attack...I had to put

>it

>> in the

>> > garbage immediately! I had nightmares...that I would soon look

>> just

>> like

>> > those people. I wish the doc had never given me that particular

>> > pamphlet...he should have them burned! For a newly diagnosed

>> patient it

>> > takes you from hope to a state of hopelessness in seconds.

>> >

>> > Darlene

>> > GO WINGS

>

>

>

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

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

see

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

>

>When replying, please delete all text at the end of your email that isn't

necessary for your message.

>

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

>

>

[Guest guest]

You get the same pamphlet from almost all doctors because most(not all, Dr.

Sy, Nase etc.) of the conventional medical establishment never look or think

beyond what they were taught in medical school, what the FDA and their peer

group organizations allow them to think or say, and whatever the

pharmaceutical companies tell them. They are courted and given expensive

gifts etc. by the big drug companies to push their drugs, whether they work

or not. You will rarely get anything from them but the same line they have

been told to say and think. Sorry if this sounds harsh to some of you, but I

and all of my family members, friends etc, have personally experienced, and

have heard and read hundreds of horror stories from people, with far more

serious diseases then ours, about the lack of help they get from mainstream

medicine and the insurance companies. If you want an eye opener about not

finding the help you need, check out any of the cancer, lupus, fibromyalgia,

diabetes, heart disease etc. support groups. Mainstream medicine is

severely letting these folks down as well.

You are correct, we need a plan to put a stop to the insanity. We need to

get organized so we have all of the correct contact names, addresses, phone

numbers, web sites, e-mail addresses and then repeatedly make our needs

known. And we need to, in as large numbers as possible, keep the pressure

on for a very long time. Also, since greed is the main driving force in the

issue of health care in this country, boycotting is usually a very good way

to get attention and put pressure on. However, for those of you who have

found a solution with the medications, boycotting the use of conventional

doctors and medicines may not be the way to go. This approach is most useful

to people with cancer who know there are other cures instead of cut, burn

and poison, that have been oppressed, run out of this country and kept from

them. We might just want to flood the appropriate agencies and people with

continual, insistent communication.

M Meadows

[Guest guest]

a,

I used tetracycline which didn't work and then minocycline which also

didn't work for about a year along with topical metrogel. I was then

prescribed a drug called Bactrim which is an antibiotic in concert

with topical Azelex. I was told to drop the Metrogel. This seemed to

work for six months and then my face got really red again w/o bumps.

I

wanted to get off the Bactrim myself and so my derm said ok. Then I

tried Sulfacet which was ok for six months and then redness again but

no bumps. Got put on Metrogel again for a few years and got bumps

(not as bad as before) and redness. Then I found the egroups and my

face has been great since.

Matija

> >> > In a message dated 4-23-00 2:50:14 PM Eastern Daylight Time,

> >> > jgreenbaum@d... writes:

> >> >

> >> > << Why did my doctors only hand me a pamphlet (same one from 3

> >> different

> >> > M.D.'s) and put out by Galderma - makers of the

Metrogel/lotion

> >> products-

> >> > when they told me about rosacea? I'm sure many of you got the

> >> same

> >> >>

> >> >

> >> > The pamphlet I got was a few years older than the one your

> >talking

> >> about...it

> >> > had pictures of deformed persons in it...I took one look at

those

> >> faces (at

> >> > home in my kitchen) and had my first panic attack...I had to

put

> >it

> >> in the

> >> > garbage immediately! I had nightmares...that I would soon look

> >> just

> >> like

> >> > those people. I wish the doc had never given me that

particular

> >> > pamphlet...he should have them burned! For a newly diagnosed

> >> patient it

> >> > takes you from hope to a state of hopelessness in seconds.

> >> >

> >> > Darlene

> >> > GO WINGS

> >

> >

> >

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

> >Please read the list highlights thoroughly before posting to the

whole group. see

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

> >

> >When replying, please delete all text at the end of your email

that

isn't

> necessary for your message.

> >

> >To leave the list send an email to

rosacea-support-unsubscribeegroups

> >

> >