Well, I suppose I should admit that I have probably had more
technical disgreements with Geoffrey than most on this Board, but I
would never advocate for a moment that anyone, least of all
Geoffrey, leave merely because of a difference of opinion or
perceived motives. Rosacea is a complex disease, and discussions
about it are bound to be multivariate. It should be no other way.

FWIW, I have seen many demodex threads come and go here, and while I
agree they are a bit distracting, there is always something new to
be learned. And then was sea salt (but only from the Dead Sea ...),
diets that could only appeal to a caveman, and so on. Bizarre, but
always entertaining ...

Rick

--- In rosacea-support@yahoogroups.com, "paulandsilus"
<paulandsilus@y...> wrote:
> Dr. Nase,
> You are certainly passionate about how you feel this support group
> should operate. It is admirable. However, I am afraid this board
> will never be completely the way you would like it to be. As it
has
> been pointed out, there are always new people asking the same
> questions, and people posting about products that have helped
them,
> even if you think the products or the way they are promoted are
> discreditable. I don't know if there is any way to really control
> the whole thing. I am afraid that it is just not completely
crystal
> clear what causes rosacea, and people respond to different
products
> and/or treatments in unpredictable ways. Therefore there will
always
> be a certain amount of confusion in discussions about rosacea,
> despite your best efforts to control that.
>
> If you really want a certain focus on the topic of rosacea, I
don't
> know if there is another way for you to get it than to start your
> own board. I know you are very busy, but obviously this is
something
> you care about a lot. Just a thought.
>
>
>
>
> --- In rosacea-support@yahoogroups.com, "Dr. Geoffrey Nase, PhD"
> <drnase1000@h...> wrote:
> > Hello Kat,
> >
> > ....I really like what you wrote below. It is constructive,
> > intuitive and makes sense. I think I can add some more points
> that
> > I think are germane to these various subjects that you brought
up.
> >
> >
> > <katwalker@j...> wrote:
> > > Without taking any sides here, the role (or non-role) of
demodex
> > > mites in rosacea symptoms and Demodex Solutions is something
> that
> > > will continue to come up on this forum.
> >
> >
> >
> >
> > ....Absolutely. It will come up on any rosacea forum or support
> > group. I have never tried to stop them from coming up, but to
put
> > some type of framework on it because it can easily take over a
> board
> > and bury rosacea. Sincerely, I would really like Demodex
> Solutions
> > to perform clinical studies in which they use the base cream and
> the
> > cream with the anti-demodex ingredients. I say this because the
> > base cream is probably as effective just by itself -- sublimed
> > sulfur and zinc oxide have been used for four decades to treat
> > rosacea. So, this confuses people. Rosacea needs less
confusion
> > and more focus. Otherwise we are stuck in quicksand for another
> > decade. From what I have read on their site and brief notes
from
> > studies, there is no way that they can tell whether the benefits
> are
> > from getting rid of the mites or just the sulfur/zinc oxide
> actions
> > on the skin.
> >
> >
> >
> > Newbies will always ask questions and any new study connecting
> > demodex mites to rosacea or rosacea-like symptoms will reignite
> the
> > topic, just like with any other treatmet (e.g., IPL, Accutane).
In
> > particular, since some people DO experience improvement after
> > eliminating demodex mites or after using Demodex Solutions
> products,
> > it will continue to be a source of curiosity.
> >
> >
> >
> >
> > ....I agree. If it works and it does not increase flushing then
> > please use the product. I have been very open with that
> statement.
> > But, do not associate that with demodex removal. First, because
> one
> > cannot due to the lack of solid studies. Second, because that
> takes
> > research dollars away from studying the heart of rosacea. It
has
> > already removed approximately $77,000 from the NRS studies.
Boy,
> > this money could have been spent getting down to the molecular
> > level. The genetic disorder. The real beast. Not a critter
that
> > may cause secondary symptoms in some people because of the
> increased
> > facial heat. Go after the primary causes....go after the heat
> > production dysfunction and there lies the answer.
> >
> >
> >
> >
> > So, I know it's frustrating to keep going over this,
particularly
> if
> > you think the role of demodex in rosacea is exaggerated, but
it's
> > not so much because people are doubting the claims made as
people
> > are either gathering rosacea info for the first time (i.e., they
> are
> > newbies) or are trying to fit some new piece of info into their
> > current conceptualization of this disorder.
> > >
> > > Also, given that we've well established that everyone is
unique
> > and everyone responds differently to treatments, I think it is
> best,
> > on any topic, that the posts try to be along one of these lines:
> 1)
> > > Seeking information/have question, 2) Posting about what has
or
> > has
> > > not worked for you personally (or stating that such and such
> seems
> > > to have worked for lots of board members),
> >
> >
> >
> > ....I agree with you up to this point. There is no way for me
to
> > explain this easily, so I will try to be constructive and
> > considerate. I think the worst thing this group can do is list
> > every single thing that has worked for them or heard works for
> > others. That sounds like a dictatorship.....right? No, it goes
> > straight to the heart of the matter, utter confusion. We had
> people
> > posting that topical hydrogen peroxide helped their rosacea,
> > glycolic acid peels, apple vinegar, DMSO + Fluconazole, CO2
> > dermabrasion, 20% salicylic acid treatments, sun tanning, nose
> > strips, suction pore removers, malic acid treatments, citric
acid
> > topicals, benzoyl peroxide, cryosurgery (freezing of the skin),
> > topical nizoral shampoo on the face, cauterizing blood vessels
> with
> > an old fashion needle cauterizer that is more apt to cause
> scarring
> > then remove vessels, weekly pore removal with home made
> instruments,
> > OTC mite cream and crabs lotion, herpes cream, and the list goes
> on
> > and on. None of the above are acceptable treatments by the
> current
> > medical standards primarily for safety and avoidance of skin
> > damage. So, somehow (and I dont have the answer), we must allow
> > subjects to get posted and then constructively put a yield sign
up
> > or allow for short debates. I try to do everything
constructively
> > and I do put up yield signs.
> >
> > Andrew had an excellent Rosacea Knowledge Support Board going
for
> > quite a while until I stepped aside due to one member and there
> was
> > then a lack of focus and forward movement. Everyone was
throwing
> > out everything in the kitchen sink including toothpaste on their
> > face and it slowly came to a halt several months after focus was
> > gone and common sense left the building.
> >
> >
> >
> >
> >
> >
> > and 3) Posting about new studies. While it's justified to say
that
> > Demodex Solutions or any other company is making claims beyond
the
> > scope of its product,
> >
> >
> > ....If one were to make these same claims in the science or
> medical
> > field, they would be literally thrown out the door. None of
their
> > material would ever get published. When you start talking about
> > near cure rates, common sense has to step in. Many of the
people
> > that post within the first week that this cream is helping are
> > emailing me in two months to inquire why it is now hurting their
> > faces or not helping any more.........there are a lot of
premature
> > reports. With rosacea and its tendency to wax and wane
> independent
> > of intervention, one should really wait at least 6 to 9 months
to
> > report on a product. Delayed irritant dermatitis, rosacea
> > dermatitis and reactive flushing can start to take place after
60
> to
> > 90 days of a wonderful treatment because the product has been
> > peeling away their skin and now they are supersensitive to all
> > environmental triggers.
> >
> >
> > ++++++++++++ You know, I feel a little bit responsible for those
> > three young ladies who have corneal scarring from Dave Flemmings
> > DMSO + Fluconazole cure. I was just diagnosed with cancer at
the
> > time and did not have the energy to debate with Dave and his 17
> page
> > demeaning retorts. I should have stepped in sooner. I should
> have
> > put up a strong yield sign and just sat back and taken the
> shelling
> > by Dave. But, I did nothing. 2 ladies have lost over 50% of
> their
> > vision and the other is undergoing surgery soon because the DMSO
> > burned right through her corneas. Shouldn't someone raise their
> > hands and say "Hey wait a minute, lets think about this",
or "Hey,
> > the first thing anyone sees on the search engines is a cure for
> acne
> > rosacea (wrong term by the way) by getting rid of demodex".
> Rosacea
> > has lacked guidance by the medical community, has severely
lacked
> > nonprofit organizations for 25 years, has no doctor forum for
> input,
> > and has been stamped a cute cosmetic disorder. Where are we
> going?
> > What are we doing? Is anybody doing anything? Shouldn't
someone
> be
> > the voice of reason? Shouldn't someone publish in dermatology
> > articles and give them the same constructive criticism at his
own
> > expense?
> >
> >
> >
> > there also needs to be some recognition that the products have
> > worked for some people (even if what about it specifically is
> > working for the person is unknown).
> > >
> > > Personally, I'm sick of all the IPL questions just because
they
> > > don't apply to me currently, but obviously these are important
> to
> > > those asking them. I either just don't read them or skim them.
> > >
> > > -Kat