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