Tripwires in terminology

[Guest guest]

Dr Lazoff:

I am flattered that you responded and corrected me on triggers.

I am still not sure if I am on the same page as you, but I

am trying to understand your response.

At least we can see how I was confused that a trigger produces

a rosacea exacerbation. If the NRS can't clearly define triggers,

or use the term consistently how do you expect a layman to? I am

supposed to determine if trigger is a noun or a verb and then

understand what it means?

The key word is still a proposed trigger MAY produce

a rosacea exacerbation and the only point I was trying to make

is that not all flushes produce rosacea. A flush/trigger/tripwire

may produce a rosacea exacerbation, right? May implies that it

also MAY NOT.

If you could clearly help me on this I would appreciate it.

I am a bit slow on this subject as you pointed out, but I

am patient and wish to learn.

As to the the allergy connection with rosacea, isn't it true

that an allergic reaction to food may produce a flush and if

a person has rosacea this may produce a rosacea exacerbation?

I am wrong on this? I really don't understand why you are

saying that " the last two paragraphs of [my] post are not

factually correct. " Where did I go wrong? What exactly

do you mean about my posts being of no reality? Please

be specific. If I am wrong I am willing to be corrected.

I really do respect your comments and want you to explain

this to me and appreciate the time you take to do this.

--

Brady Barrows - webmaster for

http://www.rosaceadiet.com

http://groups.yahoo.com/group/rosacea-diet-users-support-group

Marjorie wrote:

Message: 24

Date: Fri, 14 Jun 2002 00:47:42 -0000

Subject: Re: Diet and triggers

Brady, I believe you are misquoting/misunderstanding NRS, but in your

defense I don't believe they are clear in their presentation -- and

the confusion strikes at the heart of what is meant by a trigger, and

what is meant by an exacerbation of rosacea, something it sounds like

(to your credit) you're struggling with as well.

On the NRS's page What Is cea (www.rosacea.org/p2.html) under the

section Can Anything Make cea Worse they clearly include flushing

alone as within their definition of a trigger, but note that flushing

can also exacerbate rosacea:

" Facial lushing can make symptoms worse. It can even cause flare-ups

in patients whose rosacea was under control with medications.

Flushing can be triggered by many things ... hard exercise -- even

menopause or some medicines. The most common triggers are: hot

drinks, alcohol, spicy foods, stress, sunlight, extreme heat or cold.

Experts say you should avoid anything that causes flushing. But what

bothers one person may not cause a problem in another. You will need

to find out what things affect you and decide if you want to change

your habits to avoid them. Just remember -- flushing may affect your

success in controlling rosacea. Talk to your doctor about how you can

learn to identify -- and deal with -- your own flushing triggers. "

In the above quote, the word 'triggers' links to a new page, " Factors

That May Trigger cea Flare-Ups " . This is a confusing link, made

worse by the page's title until we recognise that 'trigger' here is

used as a verb, not a noun; replace 'trigger' with 'cause' and you'll

see what I mean.

I suspect this list of factors (tripwires) wasn't intended to be

viewed exclusively as triggers (as was the noun used on the What is

cea page). These are also -- in some cases primarily --

situations, exposures, and conditions that exacerbate underlying

rosacea, in whatever combination of subclassifications a particular

person manifests.

It's a subtle, and I believe an important and verrrry confusing

distinction that the NRS is making even more confusing. The overlap

is understandable since some vascular or inflammatory triggers that

impact rosaceans and non-rosaceans (things like the 'niacin flush'

affects both rosaceans and non-rosaceans) can also exacerbate

underlying rosacea in some rosaceans, under the right conditions. A

few minutes in the hot sun OR a half-glass of wine can cause a

transient flush in anyone, but several hours in the sun AND a jug of

Wild Irish Rose in a rosacean might also induce a full rosacean

exacerbation, whatever that manifestation may be, in a particular

person. In others, the trigger and related condition are inseparable:

a 'hot flash' can trigger a flush in rosaceans and non-rosaceans but

menopause -- with its hormonal changes causing vascular instability,

emotional stress, and drier skin -- can exacerbate underlying

rosacea.

The distinction is important because the mechanisms behind triggers

are usually well-understood and apply to both rosaceans and non-

rosaceans, as compared to the poorly-understood mechanisms behind

these factors that exacerbate underlying rosacea.

Also, we rosaceans are constantly told to avoid flushing triggers

because they may worsen or hasten the underlying progression of our

rosacea, separate from whether they also cause an immediate

exacerbation of rosacean signs and symptoms (though as I commented in

the other post, I'm not aware of the proof of this assertion,

although there is clear proof we need to avoid

irritative/inflammatory triggers.)

In comparing this NRS list of factors to the vascular and

inflammatory triggers from my last post: First, it includes all the

environmental, physical and emotional stress, alcohol and spicy foods

that are common flush inducers. Second, it includes nearly all the

foods I talked about that contain or induce small peptide release,

specifically histamine. (so much so that the last entry, " foods high

in histamine " is superfluous.) The NRS list includes topicals, as I

did, though I segregated them into an inflammatory subgroup; the

redness that comes from topicals is not vascular in origin, but it

comes from direct irritation/inflammation of skin cells.

Interesting for this discussion, Brady, is what the NRS list does NOT

include: it does not include any common food allergens and

intolerances -- no mention of nuts, wheat (indeed, it specifically

says that bread is OK), glutan, dairy products, or soy products. To

be consistent with the rest of the listing, chocolate is probably

included because it contains vasoactive amines, not because it's an

allergen. So I don't see anything on this page that supports an

allergy or intolerance link to rosacea, or other factors that support

a highly restrictive diet, even a temporary elimination diet. It

seems to me that the foods listed are included specifically, if not

exclusively, because they might trigger a flush (in rosaceans and non-

rosaceans).

Like I said, this is all pretty confusing. I have a vague sense of

how a trigger is different from a factor that exacerbates rosacea,

but it falls apart when I try to bring it all together with what I

already know and don't know about rosacea. It's a real, " the devil is

in the details " situation, when we take the time to really look at

the NRS list rather than just toss it off or use specific elements to

defend a stance, or what we sort of understand superficially about

rosacea without questioning ourselves too deeply. We're told this

list was produced by the NRS but " Complied from patient histories by

Dr. Wilkin. " I've come across his name before. I'm going to

contact the NRS and see if I can ask Dr. Wilkins to comment on this

list further.

Anyway, Brady, your comments about allergy, and the relationship

between allergies and flushing, in the last two paragraphs of your

post are not factually correct. I genuinely appreciate some of your

nuggets of truth and insight and I always enjoy your words, but

still, so much of what you say in your posts and book has no reality

for me. Like religious beliefs, I respect them as your beliefs, and

part of showing you respect is not to challenge your belief system.

They're your beliefs, and I'm glad they work for you and others.

Take care.

Marjorie

Marjorie Lazoff, MD

[Guest guest]

Brady, I'm trying to understand how the word trigger applies to

rosacea. I don't have the answers. I brought up the confusion before

you entered the discussion, and saw that you too were confused in how

the term should be used. Maybe I'm missing something, but the NRS

list doesn't help me understand any of this, and your discussion

regarding rosaceans and chocolate doesn't either.

Let me go into a little more background regarding why the use of

trigger in rosacea is so confusing to me.

Consider triggers in comparable confusing conditions such as multiple

sclerosis (MS). For example, a hot bath is an MS trigger, meaning

that it is common for an MS patient's neurologic condition to

deteriorate from an increase in body temperature such as occurs

during a hot bath. It may not be a full-blown exacerbation, it may

just be a few hours of weakness, and it may not happen to every

person with MS or with every hot bath. But a list of triggers for MS

patients includes hot baths.

If you or I take a hot bath, we will not develop any neurologic

weakness; hot baths are relaxing and we may feel lazy and soft and

wrinkly afterwards , but a neurologic exam would reveal normal

muscle strength. In fact, an objective neurologic response to

increased body temperature (as in a hot bath) can help diagnose a

neurologic problem.

So a trigger response is unique to MS (and other neurologically

impaired) patients. It's presence, intensity, and duration varies

among these patients and that's the changing variable; the point is,

it doesn't happen to neurologically intact people.

But in rosacea, we talk about triggers that affect not just rosaceans

but also non-rosaceans; the 'niacin flush' occurs in so many people

there are whole Web sites dedicated to it. We expect people to have

red faces when they come off the ski slopes or after shoveling snow

off their driveways. A blush to red wine is part of the candle light

romance of dating. People with normal skin, not to mention non-

rosaceans who happen to have sensitive skin, often react to topical

alcohol with redness and burning.

Now, not every non-rosacean flushes to niacin or blushes to red wine

or burns to topical alcohol, but at present we consider those who do

to be responding normally. (Compare that again to those who develop

objective muscle weakness after a hot bath -- no one regards that as

a normal response).

So what's the story with rosaceans -- are we also responding normally

to these triggers, is it that a higher percentage of us will respond

than the general population, is it that some of us are more likely to

respond abnormally, is it that we respond normally but have an

underlying pathophysiology that is touched off by flushing or skin

sensitivity? What *exactly* is the relationship between the

vasodilatory blush to red wine and rosacea? The manifestations of

rosacea may vary, the reaction to a trigger may vary, but the

definition and relationship between a trigger and rosacea should be a

constant.

Well, we say that rosaceans tend to blush more easily and longer to

these vasodilating triggers -- but what does that mean? Is rosacea

analogous to being clumsy, which makes one more likely to trip and

fall, and more likely to hurt ourselves when we do fall? How is an

exaggerated response to a normal physiologic event related to a

condition -- if it defines the condition (in other words, if being

clumsy IS rosacea), then what of those rosaceans who don't have an

exaggerated response to a vasodilator? Indeed, there are rosaceans

who never have a problem with flushing, there are rosaceans with rock-

solid skin that never experience irritation to any topical. What is

their rosacea (clumsiness) about?

Alternatively, are all the non-rosaceans who respond to oral and

topical alcohol actually pre-rosaceans, and a portion of those will

go on to develop actual rosacea? In other words, when the Iceman

Cometh, is his red face just a manifestation of pre-rosacea? Or a

third option: do humans flush and experience skin sensitivity across

a spectrum, and there's some arbitrary point beyond which one person

has rosacea, and further along the spectrum they have more severe

rosacea, and people move back and forth along the spectrum throughout

their lives?

That's different than not knowing what causes rosacea. We don't know

what causes MS, and inarguably few conditions are more challenging or

important to diagnose, treat or study as MS. But we can talk

unambiguously about MS triggers because, when present, they are

things that only affect those with MS (or other neurologic

conditions). That's not the case with rosacea.

Brady, I don't recall ever " pointing out " that you were slow, quite

the contrary, I gave you credit for being confused about what I also

see as a confusing issue, by which I meant that you aren't just

accepting things as a given, you're looking below the surface for

answers. I experience you online as intelligent and creative. The

answer to your question is no, you are not correct, but

unfortunately, I don't know how to discuss your diet ideas without

rattling your belief system. It's my shortcoming.

It's good to hear that you're so interested and patient in learning,

those are good qualities. Information on allergies and intolerances

and how they relate to food and to flushing are available in any

introductory immunology textbook. Immunology is tough material so be

very patient with yourself. You might also look into classes at a

local medical or allied health program on nutrition; even if you

don't fulfill or aren't interested in eligibility requirements, they

may let you audit for no credit.

Marjorie

Marjorie Lazoff, MD

>

> Message: 24

> Date: Fri, 14 Jun 2002 00:47:42 -0000

> From: " emarjency "

> Subject: Re: Diet and triggers

>

> Brady, I believe you are misquoting/misunderstanding NRS, but in

your

> defense I don't believe they are clear in their presentation -- and

> the confusion strikes at the heart of what is meant by a trigger,

and

> what is meant by an exacerbation of rosacea, something it sounds

like

> (to your credit) you're struggling with as well.

>

> On the NRS's page What Is cea (www.rosacea.org/p2.html) under

the

> section Can Anything Make cea Worse they clearly include

flushing

> alone as within their definition of a trigger, but note that

flushing

> can also exacerbate rosacea:

>

> " Facial lushing can make symptoms worse. It can even cause flare-ups

> in patients whose rosacea was under control with medications.

> Flushing can be triggered by many things ... hard exercise -- even

> menopause or some medicines. The most common triggers are: hot

> drinks, alcohol, spicy foods, stress, sunlight, extreme heat or

cold.

> Experts say you should avoid anything that causes flushing. But what

> bothers one person may not cause a problem in another. You will need

> to find out what things affect you and decide if you want to change

> your habits to avoid them. Just remember -- flushing may affect your

> success in controlling rosacea. Talk to your doctor about how you

can

> learn to identify -- and deal with -- your own flushing triggers. "

>

> In the above quote, the word 'triggers' links to a new

page, " Factors

> That May Trigger cea Flare-Ups " . This is a confusing link, made

> worse by the page's title until we recognise that 'trigger' here is

> used as a verb, not a noun; replace 'trigger' with 'cause' and

you'll

> see what I mean.

>

> I suspect this list of factors (tripwires) wasn't intended to be

> viewed exclusively as triggers (as was the noun used on the What is

> cea page). These are also -- in some cases primarily --

> situations, exposures, and conditions that exacerbate underlying

> rosacea, in whatever combination of subclassifications a particular

> person manifests.

>

> It's a subtle, and I believe an important and verrrry confusing

> distinction that the NRS is making even more confusing. The overlap

> is understandable since some vascular or inflammatory triggers that

> impact rosaceans and non-rosaceans (things like the 'niacin flush'

> affects both rosaceans and non-rosaceans) can also exacerbate

> underlying rosacea in some rosaceans, under the right conditions. A

> few minutes in the hot sun OR a half-glass of wine can cause a

> transient flush in anyone, but several hours in the sun AND a jug of

> Wild Irish Rose in a rosacean might also induce a full rosacean

> exacerbation, whatever that manifestation may be, in a particular

> person. In others, the trigger and related condition are

inseparable:

> a 'hot flash' can trigger a flush in rosaceans and non-rosaceans but

> menopause -- with its hormonal changes causing vascular instability,

> emotional stress, and drier skin -- can exacerbate underlying

> rosacea.

>

> The distinction is important because the mechanisms behind triggers

> are usually well-understood and apply to both rosaceans and non-

> rosaceans, as compared to the poorly-understood mechanisms behind

> these factors that exacerbate underlying rosacea.

>

> Also, we rosaceans are constantly told to avoid flushing triggers

> because they may worsen or hasten the underlying progression of our

> rosacea, separate from whether they also cause an immediate

> exacerbation of rosacean signs and symptoms (though as I commented

in

> the other post, I'm not aware of the proof of this assertion,

> although there is clear proof we need to avoid

> irritative/inflammatory triggers.)

>

> In comparing this NRS list of factors to the vascular and

> inflammatory triggers from my last post: First, it includes all the

> environmental, physical and emotional stress, alcohol and spicy

foods

> that are common flush inducers. Second, it includes nearly all the

> foods I talked about that contain or induce small peptide release,

> specifically histamine. (so much so that the last entry, " foods high

> in histamine " is superfluous.) The NRS list includes topicals, as I

> did, though I segregated them into an inflammatory subgroup; the

> redness that comes from topicals is not vascular in origin, but it

> comes from direct irritation/inflammation of skin cells.

>

> Interesting for this discussion, Brady, is what the NRS list does

NOT

> include: it does not include any common food allergens and

> intolerances -- no mention of nuts, wheat (indeed, it specifically

> says that bread is OK), glutan, dairy products, or soy products. To

> be consistent with the rest of the listing, chocolate is probably

> included because it contains vasoactive amines, not because it's an

> allergen. So I don't see anything on this page that supports an

> allergy or intolerance link to rosacea, or other factors that

support

> a highly restrictive diet, even a temporary elimination diet. It

> seems to me that the foods listed are included specifically, if not

> exclusively, because they might trigger a flush (in rosaceans and

non-

> rosaceans).

>

> Like I said, this is all pretty confusing. I have a vague sense of

> how a trigger is different from a factor that exacerbates rosacea,

> but it falls apart when I try to bring it all together with what I

> already know and don't know about rosacea. It's a real, " the devil

is

> in the details " situation, when we take the time to really look at

> the NRS list rather than just toss it off or use specific elements

to

> defend a stance, or what we sort of understand superficially about

> rosacea without questioning ourselves too deeply. We're told this

> list was produced by the NRS but " Complied from patient histories by

> Dr. Wilkin. " I've come across his name before. I'm going to

> contact the NRS and see if I can ask Dr. Wilkins to comment on this

> list further.

>

> Anyway, Brady, your comments about allergy, and the relationship

> between allergies and flushing, in the last two paragraphs of your

> post are not factually correct. I genuinely appreciate some of your

> nuggets of truth and insight and I always enjoy your words, but

> still, so much of what you say in your posts and book has no reality

> for me. Like religious beliefs, I respect them as your beliefs, and

> part of showing you respect is not to challenge your belief system.

> They're your beliefs, and I'm glad they work for you and others.

>

> Take care.

>

> Marjorie

>

> Marjorie Lazoff, MD

>

>

>

>