Why is the RLT Trial taking so long? [Archive]

View Full Version : Why is the RLT Trial taking so long?

22nd October 2006, 06:44 AM

As promised here are details of the lamp and my experiences. I have
broken this down into sections and have tried to keep it as brief and
concise as possible but there is much to explain and I hope it doesn't
become boring. To start off there's not much about the lamp but I feel
my history is very relevant to the progression to my current treatment.

My History
First noticed something strange was happening to my skin about 15 years
ago during a holiday in Spain. It was very hot and after a couple of
days by the pool and beach I noticed I had many acne type eruptions on
my face. I carried on as usual and a few days later my skin was clear
again. This happened ever year thereafter whilst on holiday abroad but
then started to occur during hot sun in the UK. It always used to
clear up within a few more days of exposure to the sun. I very rarely
used sunscreen at that time on my face as I always tanned very easily.
As we know rosacea is a progressive disease if not treated and my skin
was showing signs of increasing sensitivity to the sun but remained
normal at all other times. At that stage I didn't know I had rosacea.
One day I plucked up enough courage to consult a doctor about the
problem despite feeling a bit stupid about making a fuss. That was
exactly what happened and I was laughed at and told if it bothered me
to stay out of the sun. Some of you can perhaps identify with this
response from some of our medical friends. A similiar situation
occurred again later with a dermatologist and doctor together which
resulted in a big argument. I vowed to get my revenge.

4 years ago I discovered by accident that I had rosacea and I was
relieved at last to get some sense out of the situation and
satisfaction that I had not been making a fuss about nothing. I was
given a bottle of Oxytetracycline and told to go away. I assumed this
would cure the problem and felt very happy. Little did I know what was
in store for me over the next couple of years. Being interested I read
everything I could find about rosacea and also joined the UK Acne
Support Group. I must add that my rosacea was considered as being very
mild but I found that when it erupted I was extremely self conscious of
my skin. Six months elapsed and I didn't find the Tetracycline made
much difference so I stopped taking it. My doctor suggested Minocin
but I found after a few weeks my joints started to ache so I stopped
that as well. My doctor told me to stop any drugs, said I was focusing
too much on the problem and suggested that any treatment wouldn't make
much difference to the eventual outcome. I queried what he meant by
that and he suddenly looked uncomfortable because he realised my
knowledge of rosacea was better than his.

By coincidence I hit a period of intense stress which we all go through
at some stage in our lives. I was forced to take redundancy at work,
decided to set my own business up but at the same time had to commit
both my parents to an old peoples home. It was sad but they both had
diseases which necessitated 24 hour care. Unfortunately I also started
to feel unwell and it was assumed by myself and everyone else that it
was due to the stress I was under. Looking back I now realise that the
antibiotics had upset my system and caused or helped towards giving me
IBS which was being exacerbated by stress. Also my rosacea had started
to worsen and was now triggered by stress/ different foods with
flushing attacks thrown in for good measure. I decided to attend the
annual ASG open day in London and met the renowned dermatologist Dr
Tony Chu. I joined a queue of many other people for a free
consultation. He told me that my rosacea was mild but if I wanted to
avoid the risk of developing red eyes and permanent disfigurement I
should see my Doctor for treatment. A couple of topical applications
were suggested. My doctor was not keen to just take his advice even
though I had a letter from Tony with the suggested prescription. I was
given an appointment with a National Health dermatologist and from this
I was ridiculed, told I didn't have rosacea but possibly seborrhoeic
dermatitis although my skin looked perfectly normal and It was hinted I
could be imagining the problem. Needless to say what followed was a
horror story which I will not bother to describe other than to say I
reluctantly followed her treatment which caused a severe adverse
reaction to my skin. However if I ever meet this lady again I hope she
is prepared for what I will say to her because it will not be pleasant.

My skin at this time was getting worse so I tried Tetracycline again
but after a few weeks I felt ill again and had to stop. I resorted to
Dalacin T topical solution and this seemed to help. In desperation I
managed to get a referral from my doctor to see Tony Chu. There was a
three month waiting list. At this time I had read an article about a
lamp which had been designed by Tony Chu and his research team at
Hammersmith Hospital for treating acne and it sounded very interesting
as I thought it would help my skin seeing it eventually improved in the
sun. I saw him in July 1998 and he immediately put me at ease saying
that we would crack the disease in the end. He said my rosacea had
been mild but was showing signs of getting worse and he gave my skin a
score of 2 out of 10 with 0 being normal and 10 severe rosacea. He
also mentioned that my skin had started to get hard around my cheeks
with a woody type feel caused by inflammation of the blood vessels. I
asked him about the lamp and he said that the acne trials had been very
successful with it working for about 75% of the acne sufferers taking
part. He said it had been designed for acne and he didn't think it
would work for rosacea as the sun aggravated many peoples skin with
rosacea. I asked if I could try but he said all the units had been
returned to the manufacturer and there was a legal dispute over the
special tubes used which meant it could be some time before anything
was available. I walked away with a prescription for Noritate cream
and Clonidine tablets.

We got off to a bad start as the Noritate irritated my skin and after
six weeks I gave up. I saw Tony again and he prescribed Differin cream
at night and Dalacin T in the morning. Still problems as the Differin
again irritated my skin and it was back to just the Dalacin T.
Fortunately there were no side effects from the Clonidine tablets. I
had an appointment with Tony again in October 1998 and he said he
wanted me to try another oral antibiotic called Trimethoprim together
with the Dalacin T and Clonidine. I was reluctant to try this because
of my previous experiences with oral antibiotics but I trusted him and
he was very reassuring. He explained that I might feel uncomfortable
for about ten days but my system would recover and there would be no
side effects. At this time he told me that the problem with tubes for
the lamp had been resolved and it looked like he had found a company
who were going to market the lamp before the Christmas of 1998. I
returned home and started on the Trimethoprim. He was right I did feel
very uncomfortable and instead of recovering after a couple of weeks I
got worse and worse. I carried on taking it for five weeks and felt so
ill that I decided enough was enough and I would stop. I phoned Tony
up and he said it was unusual for someone to have such a bad reaction
to Trimethoprim. I said that I couldn't carry on and that I would try
and get hold of the lamp to see if it would help. He said I could but
he still didn't think it would work. I told him I couldn't see any harm
in trying. I contacted the manufacturers the same day and explained
that I wanted to try it as a treatment for rosacea and would they let
me purchase one. They were very helpful and interested but explained
that it would be at least another month before the units would be ready
for sale to the general public and I would have to wait and ring their
ordering line when the number was announced. I can be very persuasive
as eventually they agreed to sell me one of their prototype lamps used
for the origin al trial, provided I promised to keep it a secret.

The Acne Lamp
The lamp looks like a facial UV tanning unit and comprises of four
light tubes - two of red light and two of blue light. It had be known
for sometime that many acne sufferers noticed their skin improved in
sunlight and this was due to the fact that it activated a group of
chemicals called porphyrins, which are present in bacteria and act as
antibacterial agents. Unfortunately this effect could not be
reproduced with ordinary sun bed rays.

The system above uses special tubes which send out red and blue waves
of light thus blitzing the spots and healing the skin by in effect
exposing the spots to extra oxygen. The pro-pionibacterium bug, which
is responsible for acne, and is present in everybody's skin is usually
lodged in the hair root. This particular bacterium is what is called
an anaerobic bacterium which means it can only live when there is a
minimum amount of oxygen about. It is however very unusual in that it
naturally uses a chemical called porphyrin to help it breathe.
Porphyrins if they are exposed to certain wavelengths of light will
become excited and produce oxygen that will eventually lead to the
death of this bacterium. The wavelengths of light that are important
in this process are found in part of the blue spectrum. Research over
a number of years has shown that certain wavelengths of light in part
of the red spectrum influence the healing of tissues by stimulating the
white blood cells to produce fibroblasts, the building blocks from
which new tissue is created, thus healing any abrasions. The
wavelengths of light produced by the lamp are outside those which will
cause damage to the skin, there is therefore no risk of sunburn, sun
ageing of the skin or the induction of skin cancer.

Treatment with the lamp consists of sitting in front of it at a set
distance wearing goggles for 15 minutes each day. It was stressed that
people would not see their acne disappearing overnight but the average
patient would see an improvement within 8 weeks. As with other medical
treatments it is not possible to guarantee success in every case.

I started using the lamp at the end of November 1998 for 15 minutes a
day. My skin was worse at the time because I was getting a rebounding
effect caused by stopping the Trimethoprim, so It was difficult
initially to judge if the lamp was helping plus it was winter and we
all know how central heating can be a trigger. After a couple of weeks
I was convinced that my skin was improving and this was verified by
Tony when I saw him at my next appointment a week later. He remarked
how it looked and felt softer plus some of the redness had reduced.

I carried on using the lamp every day and the improvement was
maintained. Again when I saw Tony again in March and June 1999 he
confirmed that the lamp appeared to be helping control my rosacea and
told me to carry on using it as it was completely safe for long term
treatment. At this stage I told him I wanted to see what would happen
if I converted the blue tubes to red to give an all red lamp, as it was
felt the red light was the more effective for rosacea. I spoke to the
manufacturers about this and they were so keen for me to try this they
gave me two red tubes free of charge. I converted the lamp over and
after a few weeks I again felt my skin was improving even more. I have
been using the all red lamp daily ever since and it appears to be
controlling my rosacea. I still use Dalacin T on a small area of my
face and I still take Clonidine tablets. I still have the odd mild
flare up but 99.9% of the time my face is rosacea free and looks
normal.

Red Light Trial
Tony Chu was so impressed by my results with the all red light he has
decided it warranted investigation and is trying to arrange a clinical
trial with other rosacea sufferers of varying degrees of severity to
see if they obtain similiar success. When I saw him last December he
told me he had obtained the volunteers he required and was in the
process of trying to obtain funding. No timing was available for the
predicted start date and once this happens I don't know how long it
will be before some feedback emerges of the progress.

Summary
Sorry this is a long message but I felt everything I had experienced
with rosacea was relevant. As I explained last week I would have
really liked to have waited until the results of the trials were known
before releasing this, but as someone has mentioned the lamp then
perhaps I ought to tell my story to this group. We all know that there
is no miracle cure for rosacea and the lamp is certainly no exception.
Also rosacea is such a strange disease, what works for one person
doesn't necessarily work for another. As you have read the lamp has
helped me and I hope that other rosacea sufferers will be able to
benefit, but unfortunately there are no guarantees.

I will try and keep you all posted over the next few months with the
latest information on the trial. Hopefully I have answered all the
questions I was asked last week.

Regards
Peter

HOW MUCH LONGER DO WE HAVE TO WAIT FOR THIS TRIAL TO COMMENCE? IT'S BEEN FIVE YEARS, VOLUNTEERS ARE STILL WAITING AROUND, I GUESS ALL WE NEED NOW IS THE FUNDING? CONSIDERING TONY CHU IS SUCH A "HIGHLY REGARDED" DERMATOLOGIST, I'D OF FIGURED HE'D BEEN ABLE TO OBTAIN FUNDING BY NOW. :?

I WITNESSED WHAT HAPPENED TO POOR STEVE WHEN HE ASKED FOR INFORMATION ABOUT RLT. I'M READY FOR YA, BRING IT ON! 8)

22nd October 2006, 07:16 AM

22nd October 2006, 07:27 AM

Is there more to Red Light Therapy than just a placebo effect?

Director of the Skin Research Unit at Leeds University, Dr Richard Pojar, doesn't think so...

-----------------------------------------------------------------------------------

Dr Tony Chu, who led the trial, claimed that the combination of lights both attacked bacteria contributing to the acne, and promoted healing in the skin.

He said: "Our challenge now lies in incorporating this treatment to more severe cases of acne and finding ways of incorporating this treatment into their therapy."

However, an expert from one of Europe's leading centres researching acne disputed whether the light could have an anti-bacterial quality.

Dr Richard Pojar, director of the Skin Research Unit at Leeds University, said that the state of mind of the acne sufferer could have a pronounced effect on the state of the disease.

He said: "There's no evidence that red or blue light has an anti-bacterial quality - these organisms are used to living in normal light, which has red and blue light in it."

He said that putting any acne sufferer on even a "placebo" treatment - which contains no active ingredient - tended to improve the acne, simply because the improved mental state tended to improve the levels of hormones in the body.

The research was reported in the British Journal of Dermatology.

22nd October 2006, 07:27 AM

Link for the above quote.

http://news.bbc.co.uk/1/hi/health/838201.stm

Munch Ausen

22nd October 2006, 07:43 AM

Interesting quote:

"Dr Chu DEVELOPED a light unit with red and blue lamps..."

And here I thought Chu was only "testing" these devices. I wonder if he's making a profit off these devices considering he DEVELOPED THEM.

http://www.lightmask.com/uses_for_lt.htm#acne

Hats off to Dr. Chu. If he believes in his devices and they work, then he deserves to reap the rewards. =D>

22nd October 2006, 07:46 AM

Interesting quote:

"Dr Chu DEVELOPED a light unit with red and blue lamps..."

And here I thought Chu was only "testing" these devices. I wonder if he's making a profit off these devices considering he DEVELOPED THEM.

http://www.lightmask.com/uses_for_lt.htm#acne

Can someone verify that this is true? Anyone?

WE NEED PROOF!

Munch Ausen

22nd October 2006, 07:48 AM

Since you seem to care so much, give him a call.

22nd October 2006, 07:49 AM

CHU CHU

22nd October 2006, 07:53 AM

Interesting quote:

"Dr Chu DEVELOPED a light unit with red and blue lamps..."

And here I thought Chu was only "testing" these devices. I wonder if he's making a profit off these devices considering he DEVELOPED THEM.

http://www.lightmask.com/uses_for_lt.htm#acne

Can someone verify that this is true? Anyone?

WE NEED PROOF!

Damn it! We still need proof. Millie, can you verify this?

Munch Ausen

22nd October 2006, 08:05 AM

Obviously you are Nase or a close friend of his. Its funny because I thought Nase wanted a truce with Peter according to this:

http://forum.rosaceagroup.org/viewtopic.php?t=4346&start=45

The next day, Nase emailed me (mentions his little talk with Helen), asking for a temporary truce and pretending to seek my advice on red light therapy, which he said fascinated him. He asked, "My question to you is in your experience what is the safest red light system to use?"

And he wonders why no one trusts him. :^o :^o :^o

phlika29

22nd October 2006, 08:37 AM

Munch Ausen

22nd October 2006, 08:40 AM

](*,) ](*,) ](*,)

It is difficult isn't it ?

I also vote that guest accounts be disabled.

phlika29

22nd October 2006, 08:44 AM

Some of the problem stems because members also post as guests without realising (I did it myself) and of course don't say who they are because they think that it it will come up on the screen.

Peter

22nd October 2006, 10:02 AM

Okay this forum is becoming unreadable and to be honest a bit of a joke. Will all guests please sign their names, I can't work out who is posting what. Are all the posts the same person or what?

I vote for guests to be unable to post messages.

Sarah

Hello Sarah

Well I agree with you because allowing guests to posts is just an open invitation for Nase and his idiot supporters to come in just to stir. I suspect judging by the tone it's Gamache again. He does much of the dirty work for Nase which usually includes threatening people that Nase doesn't like and there is a few of those now. He has been and gone many times before from here and always makes a complete ass of himself. He should stick to admiring the bodybuilders in his gym and hoping he will be big and strong like them one day.

If you are still seeing Tony in December don't forget to ask him the questions I gave you.

Thanks

Peter

Steve95301

22nd October 2006, 10:10 AM

I WITNESSED WHAT HAPPENED TO POOR STEVE WHEN HE ASKED FOR INFORMATION ABOUT RLT. I'M READY FOR YA, BRING IT ON! 8)

Yes, it seems the level-headed good old days are gone. The subject cannot be discussed reasonably anymore.

I have been reading the support group archives, and I noticed that the early RLT users (like yourself) were both a) very curious about the mechanism of action and b) cautious not to overstate things. There was some excellent research done.

I wish it was still like that, where you could ask a direct question and have it interpreted as honest inquiry.

RLT seems to have been mythologized, or romanticized, somewhere along the way. People not only use RLT, they believe in RLT. The emotional component almost seems to be more important than the physical. It's something to believe in.

I'm okay with that -- just like I'm okay with personal religious beliefs -- as long as you don't force it on me. And that's where the belief in RLT goes beyond something personal and becomes dogmatic. Becomes intolerant.

Somebody starts a thread saying they're going to treat one side of their face only, to be more objective, and they get shouted down. Somebody starts a poll asking about side-effects, they get attacked. Why? Because list was negative (hello? side-effect?). You are only supposed to ask about positive results. And there are countless examples of this.

So you can see how the atmosphere has changed, and how reasonable discussion of the topic isn't possible.

But it's not everybody, don't get me wrong. In fact it's just one. But that's all it takes to ruin any attempt at reasonable inquiry.

Yourself, being involved in a clinical trial, and from what I read in your posts, probably appreciate a scientific approach to help explain the benefits that you've experienced. It's only natural, really. And I think the mechanism of action is crucial for several reasons:

The benefits can be optimized

When you know how it works, you can make it work even better. For example, before an IPL txt, I take a vitamin K tablet to help coagulation. I also avoid my usual supplements, that may thin the blood. I know to do this, because I know how IPL works.

You can develop a synergistic approach. Different things that may work well by themselves, might work even better together. One study I read hinted that LLLT repairs blood vessels over time. If RLT does repair vessels over time, should RLT users also be taking pycnogenol, grape seed, and horse chestnut also, all of which help repair blood vessels?

Or if the benefits are more due to anti-inflammatory effects, would something like Dr. Sy's anti-flushing regimen (http://rosacea.ii.net/hl/2880.html) enhance the effects? Or what about combining it with calendula oil, which is very anti-inflammatory?

knowing how RLT works will help in choosing a synergistic approach.

The dangers can be minimized.

After IPL, facial blood vessels are growing back. Anything that prevents angiogenesis during this period will improve the effects of the treatment. Conversely, anything that stimulates angiogenesis will be harmful.

If RLT speeds wound healing, does it increase angiogenesis? I don't know, I'm not a scientist (yet). I've certainly seen the word "angiogenesis" used in some of the literature, but the conditions aren't the same so I don't really know. I certainly think it would be wise to be cautious and at the very least, ask your doctor about it (and reporting back what s/he said would be cool too).

I feel that, especially in this area, some RLT advocates have been reckless in their advice to others. From what I read in the archives, I think in the past the RLT users would have definitely advocated caution, and stressed that much is still unknown. This caution has been lost along the way.

(I know there is also the possibility of the anti-inflammatory effects of RLT helping to prevent angiogenesis. However, the importance of avoiding flushing has been called into question lately. Many IPL practitioners do not mention avoiding flushing (but they always mention avoiding the sun). For example, I've had treatments with Dr. Bitter (both Jr. and Sr.) and they've never said anything about flushing.

In this case, the balance definitely tilts to the side of caution because the possible benefit of RLT w/IPL may not even exist. Whereas the angiogenesis is a real possibility.)

If it does cause angiogenesis, what if it's not confined to wound healing? In other words, what if it causes angiogenesis all the time?

This would be bad, because if RLT's effects are cumulative, it would be tough to notice the changes. Especially if RLT's anti-inflammatory effects effectively disguised the angiogenesis, and you wouldn't know anything was wrong until you stopped... and then you'd realize you were worse.

That's my doomsday scenario, I'll admit it's just a fear in the back of my mind and I wouldn't claim that that's actually the case. Some of the archives indicate that people notice a rapid worsening if they stop -- but I know also that you, Peter, have said that you have lowered your dose to a maintenance dose.

In any case, finding the mechanism of action -- or discussing it, for that matter (it's currently taboo) -- would help answer some of the questions (and there are questions).

Also, Dr. Nase developed a bulleted list of negative RLT effects, one which he unfortunately has not elaborated upon. The man knows rosacea. (That's a "fact", to use his favorite word). These deserve a closer look, regardless of whether or not he said them because of arguments with RLT users, because they could still be true. (I was very interested in the positive things he said in the email that you quoted, Peter. I'd be interested in anything you have from Dr. Nase that isn't publicly available. I was especially intrigued about the Ca++ signalling, because I'd just read that in a paper, and it's come up in the archives before.)

Damn. I wish I could write more but it's late and I've got to work in the morning.

Wait, one more thing. I know the "guests" were being antagonistic about the placebo effect, but I've been considering that angle for a while now. If you sit under red lights and relax, it seems like it would almost be like meditation. That would definitely be helpful, since stress is a major trigger.

(Technically that's not a placebo effect, it would be more of a misattribution of effect. But I do think the placebo effect could play a part -- however small -- in RLT. At this point, I think the science leans toward a real effect on flushing. But the mental expectations could certainly increase that effect. Like for me, accutane works so well I feel bulletproof, rosacea-wise. That confidence certainly enhances the real effect of the accutane.)

Damn. Don't feel like sleeping, but have to.

Peter, I'd appreciate any comments you may have. As you may imagine, a person who has no interest in RLT probably wouldn't think so much about it. I'm only evaluating it because I'm considering it for future use.

22nd October 2006, 10:50 AM

One study I read hinted that LLLT repairs blood vessels over time.

Nice post, Steve.

Mid-morning, when my face is at its best, my permanent redness is pretty much non-existent now. Unprecedented improvement. Better than it has been for 13 years or so.

The most ready explanation for this is that LLLT is normalising the function of my superficial vessels. It may not be this of course. But that is my best guess.

A number have seen their flushing improve after Genesis/Gemini Yag treatments. Those folks will recall that these treatments are not especially painful. Very unlikely that these treatments are destroying deep-lying and sturdy feed vessels. More likely, as Dr Crouch has suggested, that these treatments somehow prompt those feed vessels to function more normally.

We might tentatively hazard that some forms of light are indeed able to normalise vessel function.

Warren

22nd October 2006, 10:57 AM

Okay this forum is becoming unreadable and to be honest a bit of a joke. Will all guests please sign their names, I can't work out who is posting what. Are all the posts the same person or what?

I vote for guests to be unable to post messages.

Sarah

Guest posting has been mostly disabled again. All the guest posts above are the same person (JonathanGamache).

Peter

22nd October 2006, 12:27 PM

Guest posting has been mostly disabled again. All the guest posts above are the same person (JonathanGamache).

Warren

Thanks for acting on that and confirming it was Gamache - yet again. I can understand why you want to encourage guest posters but given that we have some vindictive people out there at the moment it just will not work. I hope everybody will appreciate that Nase will be behind Gamache's work.

GJ

Glad to see second time round you are now seeing a big improvement.

Steve

You have made some good points and I will reply later.

Thanks

Peter

Twickle Purple

22nd October 2006, 04:00 PM

Steve, who is religious about it? Who is giving advice to people? I can't find any posts like that. As well, apart from defending themselves to outrageous put downs and bashing, who has ever attacked any one for asking a question about RLT? It appears to me that you are the only one that makes these statements. Please don't be vague. It would be great to be honest, and up front about it. Please do share what you mean in clear unmistakeable language. Try to keep out the irrational name calling and religious overtones -- and no insinuation, please. It negates the effect you are attempting.

Examples would be nice -- context too as anything can be reinterpretted out of context.

Look forward to your post on this. :D

Munch Ausen

22nd October 2006, 05:09 PM

Guest posting has been mostly disabled again. All the guest posts above are the same person (JonathanGamache).

Nase apologizes to Peter, and asks for a truce and is now interested in RLT one day. :-k
Nase's bodyguard attacks Peter & Dr. Chu the next day. :evil:
Trustworthy? You be the judge. [-X

22nd October 2006, 07:15 PM

Bodyguards sometimes do your bidding; sometimes rush you unnecessarily off the stage. Ask Whitney Houston!

BTW Having looked into the matter I should say LLLT causes the nerves abouts the vessels - intimately involved in the dilation/constriction process - to behave themselves.

Medical science hey!

Peter

22nd October 2006, 10:00 PM

Hello Steve

As you said earlier you have made some good points but I don't agree with everything you have said.

You said the subject cannot be discussed reasonably anymore? Well I haven't really been involved with you on it but I think you have to make allowances for the climate we are now in and the damage caused by Nase with his scaremongering. Apart from his pathetic lies we also had his supporters lying on his behalf, with one on here not that long ago, deliberately being negative, wasting our time when he really had no interest in RLT at all and his main aim was to try and defend the accusations of his buddy. Because of this and I talk from experience, some of us get a little touchy when someone mentions side effects, because we immediately think here we go again.

Well I have used RLT since 98 and naturally I believe in it because it worked for me. I am very passionate about it but I have also always been honest about it's effects and I don't believe I or anybody else has made it out to be more than just another treatment option to consider. For me TP has been a breath of fresh air to this forum and whether you personally like her style or not, she has been entirely honest and put forward and written about her success with RLT for anybody interested to decide whether they want to try it. Jen has been the same but we all get annoyed when people who have never tried it themselves keep talking about side effects without any proof to back this up, as it can give others totally the wrong impression. So far only Kate appears to have had a problem with her lamp as she thought it may have caused some facial nerve twitching but she wasn't 100% certain if it was the lamp and we made some suggestions if she wanted to give it another go. GJ did have some reservations first up but again we made some suggestions and he appears to be noticing good improvements.

Steve I am not directly involved in the Hammersmith trial although I have discussed it with Tony Chu on several occasions. Why does RLT appear to benefit the rosacea skin? Nobody is sure but the main theory appears to be centred around the anti-inflammatory effect of red light on the skin and underlying blood vessels, coupled with it's healing effect. Antibiotics are usually used are a mainstream treatment for rosacea because of their apparent anti-inflammatory effect, so maybe red light works in a similar way? To be honest I never really worried why RLT worked as I was just happy that I had found something that really helped me.

I am not aware of RLT causing angiogenesis and Tony Chu told me there was no evidence of this after I forward him some of Nase's mumbo jumbo.

It sounds to me you are putting yourself off RLT before you even start by imagining all these terrible things are going to happen to you with your doomsday scenario. Again you have Nase to thank for that. It was Kristen who said that when she temporarily stopped RLT her skin got worse but to me that is probably no different to any other treatment and proves that it was working. She also wrote this on.

http://forum.rosaceagroup.org/viewtopic.php?p=28918&highlight=#28918

"As I mentioned to David on another thread- if it were true red
light was so deleterious bottom line is those of us who have been using it
daily for years would have out of control conditions. Not even the Yag would
be able to clean up the mess & I feel the progression of my condition has
been stopped. I'm trying to repair years of damage but contrary to reports I
have gotten better not worse. I still have flares- sometimes bad ones but as
we know there is no cure & I'm infinately more functional now than 4 yrs
ago. ..."

I still use my lamp daily when I feel like it but I am fairly relaxed about it and will miss days and occasionally a week if I travel and I do not notice any deterioration. About a month ago a bought a hand held LED unit and I have been experimenting with that. Like most report it's impossible to get burnt by this form of red light.

Nase made up a list of negative RLT effects and I mean made up. He didn't elaborate because he didn't have a clue what he was talking about and he just wanted to scare people. I am not convinced Nase knows as much about as rosacea as some of us have been led to believe. If you want to learn about rosacea and it's treatments spend some time talking to Tony Chu - a real professional. FACT.

I agree with you that relaxing / meditation can really help rosacea but when you are under or infront of your lamp it's the red light which is having the main effect. I talk from experience and others have also commented that it is relaxing using a lamp especially when it becomes part of a regular regime. One product I found that was compatible with RLT was using Aloe Vera gel as I always felt it helped with the healing and calming effect but it doesn't work for everyone.

Not sure if I have helped you or told you anything new? Tell me if Accutane works so well for you why do you want to try RLT? Is it because it's a drug and you are getting side effects? I always think with rosacea if you are using something that definitely works and you are comfortable with it then don't change.

Anyway I hope you can patch up your differences with TP. If you decide to try RLT I wish you luck.

Peter

Steve95301

23rd October 2006, 03:20 AM

Tell me if Accutane works so well for you why do you want to try RLT?

First of all, I'm curious. Do I really need an excuse for being curious about something? (But then, you said you never really cared how RLT worked, as long as it did. That indicates a huge difference in our personalities, so maybe from your point of view curiosity isn't a factor. Well -- and you're just going to have to trust me on this -- for some people, it is.)

But since people bring up constantly the fact that I don't use RLT, let me explain why I don't.

There's no way I would try RLT right now, because I don't need to. I'm in near-remission, I go to University full time, work two jobs, and things are just fine. I'm not going to throw an unknown variable into that equation.

But if I knew how it worked, and therefore trusted it, I would consider making it part of my multi-pronged approach. I use accutane, but I also take supplements. I also use calendula, because it combines so perfectly with accutane.

Anyway, I'm not sure of why anybody would want to limit themselves to some kind of arbitrarty treatment quota. The more tools in the rosacea toolbox the better. (Seems kinda obvious?)

But perhaps the general principles aren't explanation enough. Here are some specific reasons:

- I don't know that I'll always have access to accutane.
- I like to stop accutane in the summer, because I burn too easily
- I have to stop accutane two months before a maintenance IPL txt
- I may have to stop if any health problems develop (eyes, liver, depression)
- I am not emotionally invested in accutane -- it's not like my favorite football team, where I have to root for it and against all others. It's not like a spouse, where I have to be faithful to it. If I start talking to RLT, or GliSODin, or botox, accutane doesn't get jealous.

Anyway, since it seems nobody is interested in discussing the science, there's not much else to say.

Steve95301

23rd October 2006, 03:45 AM

IowaDavid

23rd October 2006, 04:31 AM

We might tentatively hazard that some forms of light are indeed able to normalise vessel function.

Absolutely, that's a great hypothesis to start with.

Let's try to prove or disprove it by searching the literature.

BTW Having looked into the matter I should say LLLT causes the nerves abouts the vessels - intimately involved in the dilation/constriction process - to behave themselves.

It almost seems like we could have a scientific discussion here...

I wish there were some literature regarding RLT and rosacea--it simply doesn't exist. So all we have to go on, for right now, is anecdotal reports. There are lots of studies about RLT for other uses, but none that really address our concern.

If it does stimulate dermal fibroblasts to encourage the formation of collagen, then that would make sense--more cushioning to reactive vessels if your skin is thinned, irritated, etc. The anti-inflammatory actions are a bit harder to pin down, though. I still haven't gotten a satisfactory answer on the exact mechanism of the anti-inflammatory action.

But, I dunno--I tend to take faith in others' experiences and my own. It would be a pity for people to wait for double-blind placebo RLT rosacea studies before they tried it. I just don't see any real definitive evidence coming out any time soon.

Peter

23rd October 2006, 12:33 PM

First of all, I'm curious. Do I really need an excuse for being curious about something? (But then, you said you never really cared how RLT worked, as long as it did.

Steve

I was tired last night but I worked late attempting to answer your questions but by the sound of it I didn’t really help?

When I said I didn’t care it wasn’t meant to sound flippant but more that I was so relieved to find something that worked, that at the time I wasn’t too worried about the reasons why. My suspicions of why it helped were based round the improvement I also got through being exposed to strong sunlight, despite this also being my initial trigger.

Whether the results of the trial, when they emerge, will answer your questions remains to be seen. Personally I am interested whether RLT will have a positive effect on all rosacea sub types or be more restrictive to certain areas of the rosacea spectrum.

There are many aspects of rosacea that make me curious but it is very difficult sometimes trying to establish the truth these days plus the condition itself causes endless frustration through its own variations and anomalies.

You have had success with, I assume, a low dose of Accutane. Two of my friends use low dose Accutane and are very happy with it. I would love to know why this drug can be effective for some with rosacea but for others it can make them worse. Has your successful experience with Accutane given you any ideas on why this should be so?

As you can see, we don’t have all the answers – yet - but at least we are honestly trying.

Thanks

Peter

redhotoz

23rd October 2006, 12:56 PM

Twickle Purple

23rd October 2006, 03:55 PM

Anyway, since it seems nobody is interested in discussing the science, there's not much else to say.

Hi Steve

I do believe many folks would like to discuss the science behind low level red light therapy and there has been a great deal of info posted to date. As you would be aware, there is even more out there on the Net. Alas, it is not specific to Rosacea. So, I'm not really sure how it can be discussed, other than presenting info relating to other conditions as well as anecdotal reports. But of course, anecdotal reports are not necessarily scientific, just a measure of what each individual feels it is doing for them by way of results.

Anyway, I'm happy with my decision to try it. I've had no ill effects from it, only positives. For me, I'm happy with that. Yet, I am very much looking forward to research being done on it, specifically for Rosacea. I am going to work on trying to get some research done through the RRDi. Wish me luck!

Jen

I wish you the very best luck! :D Excellent post Jen. You sum it up perfectly.

It's tiring when there are attacks on lack of scientific debate when all we have presently is anecdotal with inferred explanation! The grandstanding and illogical demands for fact and scientific discussion reads as tedious posturing. We are all empowered by knowledge, but knowledge with no reason is useless. We know that we don't know -- yet. We can pontificate til the cows come home but it's all hot air. We have information available to us that we can use to make a reasonably informed decision whether to proceed or not -- be it information from reports found on the 'net or anecdotal findings from users posted here or on other support groups.

Steve95301

23rd October 2006, 08:57 PM

Steve

I was tired last night but I worked late attempting to answer your questions but by the sound of it I didn’t really help?

Peter, I didn't have any questions. I had observations and thoughts.

And I didn't respond, because I didn't want to be rude. I was in a hurry this morning, and I may have written something in the wrong way, because I disagree with many things you said. I'll have to work on a response that's neutral in tone.

But I think I need to clear up a misconception:

I do NOT object to RLT, or RLT experimentation, or reporting on results of that experimentation.

I object to the ATMOSPHERE in which RLT is a "special" subject, that cannot be discussed just like any other treatment. There is a "politically correct" atmosphere surrounding RLT that disgusts me.

That's the issue.

People responding to this thread so far seem to be addressing the science, which is not the real issue.

redhotoz

24th October 2006, 02:27 PM

Peter, I didn't have any questions. I had observations and thoughts

Hi Steve

Without wanting to sound overly pedantic, you did ask Peter for comments on your observations and thoughts. Whether one calls them questions or responding with comments, is pedantic. Nit picking, really.

Anyway, I believe this is the wrong thread to keep alive. It was started with ammo, a gun firing blanks really.

I think we would all like to discuss low level red light therapy without the drama associated. I'm so tired of it.

Jen

Peter

24th October 2006, 03:06 PM

Hello Steve

You appeared to ask me questions in a roundabout way which I answered plus you asked for my comments which I also gave you. If you disagree with many of the things I said then I would be interested to know what the problem areas are?

As Jen has said we are all looking forward to any research being carried on this subject but at the moment people will have to make their own mind up based on the information we have supplied and that which is currently available on the archives.

I don’t agree with your “Politically correct” statement at all and as I mentioned before, some of us have had to put up with a lot of flak over RLT and as it later emerged the bad press it was given from one camp was just pure fictitious nonsense, in an attempt to frighten people away. As far as I am concerned all of us who have written about our experiences with using red light just want other rosacea sufferers to benefit and we have all fallen over backwards trying to help others. Examination of the posts on the archives will confirm this.

To be honest Steve I am not really sure what your problem is? Again as Jen has just posted this thread which was started by a Nase supporter deliberately trying to stir up trouble is not the right place to carry on with this. If someone wants to start a new thread then I will try and join in with any sensible discussion that evolves.

Thanks

Peter

Twickle Purple

24th October 2006, 03:55 PM

Hi Jen and Peter,

It appears to me that the thread is being stirred up by the typical elements that have always caused problems. It's all same same. They don't have a realistic complaint, first it's lack of scientific discussion, then, no wait, that's not it at all! It's the atmosphere -- we're all too nice to each other! I understand that words on a screen can be interpretted many ways depending on the mood and bias of the viewer, I can only assume that the carrying on is due to a personality conflict, and for that nothing can be done. Whether it is youth or arrogance, time will tell. It will either sort itself out or not. Folks have read enough to see what is happening here now.

I'm going to start adding onto my RLT threads again. I've purchased an awesome new camera, the Canon D5, to catch all the little details. Time to ignore this negative energy and focus positively on healing.

Twickle Purple

clsykes00

24th October 2006, 06:23 PM

What a shame, you RLT guys are at it again.

I feel for you Steve.

Steve95301

24th October 2006, 06:31 PM

Twickle Purple

24th October 2006, 06:50 PM

What a shame, you RLT guys are at it again.

What is it that we're doing? There is no RLT 'camp' -- but there are folks who like to make an anti-RLT stance which I think is a bit strange. They make it a point to comment negatively to people who post on RLT. Ah well, different strokes for different folks.

PS. Nice to see you outside of your guest cloak Trey.

clsykes00

24th October 2006, 07:57 PM

[quote="Twickle PurplePS. Nice to see you outside of your guest cloak Trey.[/quote]

Constantly attempting to get a rise out of people. What a shame again.

Twickle Purple

24th October 2006, 08:08 PM

I admit, all my responses, are carefully crafted to only seem to be in defense of juvenile and unrelenting attacks. I am actually not posting about RLT at all! I have been found out and am deeply ashamed. :cry:

Peter

24th October 2006, 08:30 PM

Peter

24th October 2006, 08:33 PM

I just don't have the time to be replying to this every day. In my last post, I explained what the problem was. If you don't think it's a problem, then we disagree. Fine.

(I wasn't nitpicking about the questions. I interpreted "Did I answer your questions" as patronizing. But since there are no facial expressions on the internet, misunderstanding happens all the time. Maybe I misinterpreted it, which is why I didn't make a big deal out of it, I simply clarified. I don't think that was unreasonble at all.)

Hello Steve

We are all busy people but here to try and help others - if we can.

If the problem is a personality clash with someone then all I can suggest is that you try and solve it by PM as it can work sometimes?

I release you don't have a problem with people using RLT but you are just curious about why it works - correct? Well as I suggested as we have our own section now then perhaps it can be discussed in another thread? I am no scientist but Kristen and David are pretty well clued up on the technical stuff.

Didn't think I was being patronising before about your "questions". I spent a bit of time replying to you and it was my turn to be curious and enquire whether I had helped? That was all and nothing sinister but as you say no big deal.

Thanks

Peter

clsykes00

24th October 2006, 08:56 PM

Constantly attempting to get a rise out of people. What a shame again.

Hello Trey

Well obviously you haven't changed much during your little break as you still accuse others of doing what you do most of the time.

No doubt your friend has pushed you back in to try and push his ratings up.

Peter

Never short on your back handed approach and misguided logic. I guess I missed it.

Not looking to trade jabs per usual. Just surprised that the RLTs are still going at it with others. "Why can't we just all get along?" - Rodney King

Twickle Purple

24th October 2006, 09:17 PM

"Why can't we just all get along?" - Rodney King

Yes please. That takes an effort from all parties. But, you're off to a bit of a lopsided start there. There are no "RLTs" going AT IT with others. There are members that will stand up to being attacked. So if you want peace, don't attack, no snide comments, no put downs or insinuations. That would be a great recipe for peace. For all of us. I'm hear to learn and share, but I promise that I will always give back what I get, be it good, bad or indifferent.

Cheers,
Twickle Purple

Peter

24th October 2006, 09:47 PM

Never short on your back handed approach and misguided logic. I guess I missed it.

Hello Trey

I always tried to be polite but that was often beyond you. I never got a chance though to say goodbye last time as you legged it so quick when the going got tough and the truth started to emerge.

For your information the coverage of red light treatment has been extremely good since you left and coincidently the "going at it" as you eloquently put it, seem to stop as well apart from a recent blip.

I know why you are back.

Peter

clsykes00

24th October 2006, 11:09 PM

Twickle Purple

24th October 2006, 11:21 PM

You continue to prove your true self. I am astonished by the your persistence.

Peter is very persistant, yes, and aren't we all glad! Peter has a great nose for frauds, he is famous for exposing Nase. And, time and again, has seen the truth of things. Which as we all know is the reason why Nase chose to demonize RLT -- in retaliation for being exposed he tried to malign Peter's character. Peter has proven time and again that he is an honourable, dedicated and decent man. This is his true self, an opinion shared by many good people.

Cheers,
Twickle Purple

Steve95301

24th October 2006, 11:23 PM

I release you don't have a problem with people using RLT but you are just curious about why it works - correct?

Peter, I don't know how to make my point so that you'll understand. Here it is, once more.

(I'll just quote from my previous post)

I object to the ATMOSPHERE in which RLT is a "special" subject, that cannot be discussed just like any other treatment. There is a "politically correct" atmosphere surrounding RLT that disgusts me.

That's the issue.

(bold in original)

Twickle Purple

24th October 2006, 11:39 PM

I posted something just after that original post of Steve's that wasn't politically correct and it was deleted. Someone didn't like it. :cry: I will try again, but with more care as to not offend.

--

This is where I become confused, be gentle, I know it happens easily. My poor head has a hard time following why it is exactly that some people have a problem with the RLT posts...

I release you don't have a problem with people using RLT but you are just curious about why it works - correct?

Peter, I don't know how to make my point so that you'll understand. Here it is, once more.

(I'll just quote from my previous post)

I object to the ATMOSPHERE in which RLT is a "special" subject, that cannot be discussed just like any other treatment. There is a "politically correct" atmosphere surrounding RLT that disgusts me.

That's the issue.

(bold in original)

I was sure Peter had addressed the following correctly. Hence my confusion.

Tell me if Accutane works so well for you why do you want to try RLT?

First of all, I'm curious. Do I really need an excuse for being curious about something? (But then, you said you never really cared how RLT worked, as long as it did. That indicates a huge difference in our personalities, so maybe from your point of view curiosity isn't a factor. Well -- and you're just going to have to trust me on this -- for some people, it is.)

But since people bring up constantly the fact that I don't use RLT, let me explain why I don't.

There's no way I would try RLT right now, because I don't need to. I'm in near-remission, I go to University full time, work two jobs, and things are just fine. I'm not going to throw an unknown variable into that equation.

But if I knew how it worked, and therefore trusted it, I would consider making it part of my multi-pronged approach. I use accutane, but I also take supplements. I also use calendula, because it combines so perfectly with accutane.

Anyway, I'm not sure of why anybody would want to limit themselves to some kind of arbitrarty treatment quota. The more tools in the rosacea toolbox the better. (Seems kinda obvious?)

But perhaps the general principles aren't explanation enough. Here are some specific reasons:

- I don't know that I'll always have access to accutane.
- I like to stop accutane in the summer, because I burn too easily
- I have to stop accutane two months before a maintenance IPL txt
- I may have to stop if any health problems develop (eyes, liver, depression)
- I am not emotionally invested in accutane -- it's not like my favorite football team, where I have to root for it and against all others. It's not like a spouse, where I have to be faithful to it. If I start talking to RLT, or GliSODin, or botox, accutane doesn't get jealous.

Anyway, since it seems nobody is interested in discussing the science, there's not much else to say.

No disrespect intended. Honest! We're all turning the page here. I am really trying to understand. It's either the lack of scientific discussion or the atmosphere. Both are easily addressed though. The science aspect, or lack of relevant to Rosacea particularly, has been discussed, and as for the ATMOSPHERE, well it's only bad when people go on the attack. I've never read a post where a person discussing their experience has attacked another. There are plenty though that take exception to abusiveness brought on by others. As I said, oops it was deleted, well then, what I would like to say is that if you do not like the atmosphere in a thread then do not participate in the posts, especially when something upsets you so. I hope that helps and we can all join in the peace now.

Cheers,

Twickle Purple

Peter

25th October 2006, 05:26 PM

Peter, I don't know how to make my point so that you'll understand. Here it is, once more.

(I'll just quote from my previous post)

[quote]I object to the ATMOSPHERE in which RLT is a "special" subject, that cannot be discussed just like any other treatment. There is a "politically correct" atmosphere surrounding RLT that disgusts me.

That's the issue.

Steve

Of course I can understand your point but why can't you understand that people are likely to become increasingly irritated, when despite us constantly reminding them, certain individuals still keep on banging on about scientific evidence and side effects, both of which don't exist!! RLT has not been made into a special treatment and all of us have been more than happy to discuss our experiences and help any person who appears to be genuinely interested, including you.

If you want to discuss possible side effects then contact Nase. He came up with a list as long as his arm when he suspiciously became an overnight expert on red light units. As we know there is theory and practise and very often the two don't correlate. I have used a form of RLT for 8 years now, so if anybody should be aware of potential side effects, especially long term ones, then it would be me. Sit yourself in front of one of the many approved LED lamps and try and work out who could ever possibly get badly burnt by such a gentle light source.

I rest my case.

Take it easy.

Peter

Steve95301

25th October 2006, 08:24 PM

Twickle Purple

25th October 2006, 08:43 PM

There's an excellent poll here in this section of the site.

http://forum.rosaceagroup.org/viewtopic.php?t=4208

And very many threads and posts by RLT users. I recommend anyone interested in this topic to check them out. There's a powerful search engine tool too (at the top of the page, under the logo) which can search across many different forums and sites. A search on this site is effective to find posts that are not current. It will also become clear how the users respond to RLT, some helpful hints or guidance can be found there as well. RLT for Rosacea is presently undocumented so reading up on what other user's experience is a good indicator of what you can expect. This will also illuminate the history of RLT with respect to this forum. While RLT is not a cure, the very large majority that use it are extremely happy with the positive effects to their skin and flushing.

There is also a vibrant e-mail based Rosacea support group at Yahoo!, here is the link to that.

http://health.groups.yahoo.com/group/rosacea-support/

This group has almost 7000 members and is heavily moderated so the environment is always supportive and lively in a positive way. There are many helpful and informative posts on RLT there as well. It is worth joining.

Anyone concerned about the negative effects of RLT should search the Web. We have not come across any as of yet. But if someone does, perhaps they could post them on this forum. The key is diligence with RLT, many users have experienced a momentary and slight increase of flushing the first few times -- almost all users comment on this. Mine were for the first week and passed within 10 minutes into the treatments (my treatment length is 20 minutes). It is worth working through that. We are not sure presently what the mechanism of action is, but the concensus is that with committed use the temporary flushing passes and prolonged periods of calm, pale skin occur. It is an accumative treatment, and like many medications, when you stop your symptoms may return. But with time, the positive results last longer and longer and treatment sessions are dramatically reduced. It works for other conditions as well, there are many links on this site to scientific studies.

We all want the best we can for our skin. For the majority of users, the choice to use RLT has been a great one.

Cheers,
Twickle Purple

Peter

25th October 2006, 09:52 PM

clsykes00

25th October 2006, 11:31 PM

when despite us constantly reminding them, certain individuals still keep on banging on about scientific evidence and side effects, both of which don't exist!!

No side-effects. Hear that, folks? CASE CLOSED. Exactly the mentality that I've been pointing out.

And if you attempt to discuss side-effects, you will be "constantly reminded" that they don't exist.

Peter, you've made my point better than I ever could. Thank you.

I have used a form of RLT for 8 years now, so if anybody should be aware of potential side effects, especially long term ones, then it would be me.

Wow. Just, wow.

Does Dr. Chu know you've never had any side effects? You should tell him, so he can stop the study. Your experience settles the matter :roll:

Steve

Congratulations you have just demonstrated to everybody what a totally immature individual you are. I had suspicions you were a time waster and not at all interested in RLT but your post now confirms this. I will have to hold back on my comments as I know you get scared when the "ATMOSPHERE" gets a bit hostile and I couldn't stand all that moaning of yours again.

Would you like me to invent a couple of side effects just for you to give you something to talk about? That's what you want really isn't? Something to satisfy your doomsday scenario.

Tony Chu has been my dermatologist since 98, so difficult as it might be for you to comprehend he would actually notice if I had any problems from RLT.

One day you might well be eating your words in that big mouth of yours.

Back to his backhanded ways again.

Steve's point is clear and obvious.

To say no person has had side effects is just purely eroneous. A number of people have mentioned they have flushed. Some say that the flushing regressed over time, but not all.

So you have had success. Well, one person does not make an ounce of statistical significance. And if you say others on this site should make RLT more statistically significant, well (1) that would be a different statement than you said above and (2) that is a specious argument.

The problem I have always had, which sounds like the same problem Steve has, is that there is no science on RLT related to rosacea right now. However, the RLTers believe that everyone on these boards should just accept the word of people most of us do not know personally. If we don't, then we are non-believers and are made out to be attacking RLT. Quite the contrary. I do not know of anyone with rosacea and with no economic interest that would hope for a treatment modality to not work (note: this seems so obvious but seemingly missed by the RLTers). However, some of us, like me and I think like Steve, are more precautious. I want more science. This desire shouldn't cause RLTers to be so argumentative however. This desire for more science is a personality trait. And in my case, I developed this precautious nature from being misled by doctors and their so called magic elixirs (i.e. medical devices like aurora, creams like steroids, etc.). That said, how the heck do you think those of us having been misled by doctors, people we see right in front of our face, can put full faith and trust in someone or some people we don't know (just through the impersonal Internet) about a device that really has no science related to rosacea around it? That is a tall task in my opinion. That is my personality however. But, for you, especially you Peter, to attack and chastise us with your backhanded comments and make horrible unfounded and illogical accusations for any negative or precautionary comments made about RLT is really a horrible personality trait that I hope you learn to correct.

I appreciate the hard work that you have done regarding RLT. You have gone above and beyond what most people on these sites can claim to do. But, this good work does not give you license to dictate how discussions of RLT should go on the Internet and to make backhanded comments that ultimately instigate arguments.

Have an open mind to people that require different levels of proof. Just like you have felt the need to demonstrate the benefits of RLT, a largely well served effort, some of us feel the need to lay out the potential risks, especially since some of us have a history of being misled.

I think that was clear but for some reason think that some horrible backhanded and illogical statements about me are forthcoming. Let's see.

DukeCity

25th October 2006, 11:42 PM

- I would love to finally see a conclusive study published on Red light, it obviously works wonders for many people. Iowa and Peter have used it for many years, as have others, so I don't take their comments on it lightly. -- If Red light induces "healing' by stimulating and increasing blood flow to an area, then it also must repair the damaged rosacea vessels already in that area, otherwise you'd have a massive increase in telangiectasia, flushing and erythema. --

Steve95301

25th October 2006, 11:50 PM

Peter,

I know you desperately want people to confuse anecdotal evidence with proof. I know they must be the same thing in your mind.

But they're not.

I want to thank you again for crystallizing the issue in my mind. I always knew what I wanted to say, but your post showed me how to articulate it perfectly. It's very satisfying to be searching for the right way to say something and finally find it.

So here it is:

It upsets you when people don't accept the anecdotal evidence of a handful of rosaceans as the end of the issue. When people continue to investigate, it offends you.

Since you don't think there's any possible side-effects, nobody else is allowed to discuss it.

I can't think of a better example than when you said, "I've never heard of angiogenesis as a side-effect".

The implication is that since YOU'VE never heard of it, it must not exist.

(I especially like the fact that you continue to ignore my well-founded suggestion that RLT after IPL could very well be detrimental.)

I'm sure that in your mind, your experience settles the issue. When you say something, everyone should accept it as fact. You're personally offended when people want to investigate something that you've already come to a conclusion about. It's almost like calling you a liar.

I wish you all the best.

Steve

Twickle Purple

25th October 2006, 11:57 PM

...a communications class at the local college might help you begin to value other people's opinions.

I think this is certainly the issue, not valuing anothers opinion. If that were to be done then the heat would get out of this. It's takes effort on ALL our parts.

--

I would also like to thank Peter again for bringing RLT to my attention certainly, and for telling us all about the clinical red light trial (LED) for rosacea Dr. Chu is planning. It will of great interest to learn what his study and investigation reveals.

Twickle Purple

Munch Ausen

26th October 2006, 01:39 AM

Now look what Nase has started .. unrest !!!! :evil:

bentherebefore

26th October 2006, 02:01 AM

Just my two cents...

I support Steve's point of view... one of honesty and investigation. He is not being critical, he said himself that he is looking at it as a potential treatment. As am I.

Steve, you are a great contributor to the board and hope you are never driven away by all this.

I think we should all take an honest view of things, both the positive and the negative. Lord knows there is always both sides to every treatment.

Twickle Purple

26th October 2006, 02:16 AM

No worries Munch Ausen.

I have no doubt that we will all be fine in the end. Once the studies happen that finally explain the reason the RLT users find it helpful for their Rosacea, the drum bangers will move on to something new. I mean really, we are just saying what works for us, it's a pretty exciting discovery for us, and we get called religious zealots and are subjected to constant put downs. Which seems to be okay, because it's all in the name of science. Hardly.

Just a quick aside: anyone know the mechanism of action for MetroCream for Rosacea? No? Okay, then how about Accutane? Hmmm, no?

Just wondering.

Twickle Purple

Peter

26th October 2006, 10:06 AM

Now look what Nase has started .. unrest !!!! :evil:

Munch, you are right. This thread was started by Gamache and Nase to stir up trouble. They want the Forum and Rosacea Support closed down so people will have to start paying Nase for information instead. You really do not have to be a genius to work all this out.

-----------------------------------------

Steve, I think we all understand that this is a stressful time for you with your exams, and I'm sure we wish you the best of luck with them.

I don't confuse anecdotal evidence with proof, which is why I have always called for double-blind placebo testing of RLT. I'm not offended when people investigate this or any other treatment type. You might be right in thinking that RLT after IPL could be detrimental but users of these very gentle lamps have only reported the exact opposite, so to call that a "well-founded suggestion" just seems mystifying to me.

Of course no one can give a definitive answer until several independently monitored placebo tests have been conducted. It's just that the atmosphere is heated because we've spent so long dealing with the fall-out from the faked treatment reports concocted by Nase and thrown at us endlessly by his cronies.

-----------------------------------------

Trey, if anyone makes "horrible unfounded and illogical accusations", it is you. You spent months badgering anyone who posted in favour of RLT with a string of false accusations and endless demands for information which no one could supply, and you knew it? Have you forgotten how in just one of your posts, you asked me 23 questions?! The thread is still out there for anybody to check.

You rejected anecdotal evidence that RLT has helped some people, but kept dragging up anecdotal evidence - provided only by Nase - that RLT had burnt people. As GJ pointed out: "you are happy to countenance anecdotal evidence when it suits you".

Time and again you kept bringing up Dr Crouch's name to back your claims,
eg:

- "I still didn't see you refute Dr Crouch (which I asked for evidence on my last post)? Or are you just going to single Dr Nase out again?"

- "You should know that there are doctors, despite what Peter says, that have claimed that RLT has hurt patients."

- "Why do you say Dr Nase was telling lies about "this" (LED Lamps) treatment? Do you have definitive, scientific proof that they work? Proof that also disputes Dr. Crouch's opinion as well?"

- "I know you don't care about Dr Nase's opinion but have you also disregarded Dr Crouch?"

- "Discuss burn victims with Dr Peter Crouch and other doctors for more insight on reactions to the face."

Yet you were conspicuously silent when Dr Crouch categorically denied Nase's absurd claims (a) that Dr Crouch had seen anyone harmed by the use of low level RLT, and (b) that he was having to turn away people burnt by RLT "because he does not know what to do with these cases".

Dr Crouch explained that he had "never suggested that burns could result from Low Level Red Light Therapy" and was instead "certain that, if properly constructed, using low powered LEDs, benefit may be obtained" by rosaceans, and that "Arrays of Low power LEDS should be safe and may be beneficial ...", but again not one word of apology from you.

And now you've come back to stir the pot all over again, joining a thread started by Jonathan Gamache, who was banned from the board for posting his own faked treatment reports on RLT.

Steve95301

26th October 2006, 02:05 PM

I don't confuse anecdotal evidence with proof, which is why I have always called for double-blind placebo testing of RLT. I'm not offended when people investigate this or any other treatment type. You might be right in thinking that RLT after IPL could be detrimental but users of these very gentle lamps have only reported the exact opposite, so to call that a "well-founded suggestion" just seems mystifying to me.

Mystifying.

Okay, let me de-mystify you.

Let's do the bare minimum amount of research that's humanly possible: follow the first google link.

Type "LLLT angiogenesis" into Google.

Follow the very first link that comes up. You'll read this:

Objective: This study was conducted to analyze the effect of different irradiances of low-level laser therapy (LLLT) on angiogenesis after partial rupture of Achilles tendon of rats. Background Data: . . . Methods: Ninety-six animals were divided into three groups subject to treatment during 3, 5, and 7 days post-lesion. Thirty-two animals were used in each group. The groups were further divided into four subgroups with eight animals in each, receiving In-Ga-Al-P laser (660 nm) treatment at (1) mean output of 10 mW, (2) 40 mW during 10 sec, (3) a sham subgroup, and (4) a non-treatment subgroup. Each animal was subjected to a lesion of the Achilles tendon by dropping a 186-g weight from a 20-cm height over the tendon. Treatment was initiated 6 h post-injury for all the groups. Blood vessels were colored with India ink injection and were examined in a video microscope. Results: Laser exposure promoted an increase in blood vessel count when compared to controls. The 40-mW group showed early neovascularization, with the greatest number of microvessels after three laser applications. The 10-mW subgroup showed angiogenesis activity around the same time as the sham laser group did, but the net number of vessels was significantly higher in the former than in the controls. After seven irradiations, the subgroup receiving 40 mW experienced a drop in microvessel number, but it was still higher than in the control groups. Conclusions: LLLT of different intensities seems to promote neovascularization in damaged Achilles tendons of rats after partial rupture compared to controls.

So, Peter, you can stop being mystified. (All the other google links are good too, not just the first...)

Now let's say you're about to go spend a huge amount of money on treatments to remove blood vessels from your face.

Then you read this. Are you telling me this wouldn't make you think twice about using RLT after IPL?

Twickle Purple

26th October 2006, 03:15 PM

Thanks for the 'cut and paste' as you call it, Steve. For some reason when I do this though you ridicule me. :wink:

This information you post makes RLT even more intriguing because the majority of people here that use are PALER after treatment. Obviously there so much more to it, as has been pointed out, time and time again. I look forward to the studies that come out on this.

In the meantime, the other RLT threads contain dozens of links and posts on RLT which testify to the benefit of the treatment.

--

A lot of posts have been removed. Rightly so. The environment here is acrimonious. Calling Jen a bully! Jen is the kindest, gentlest and sweetest person and doesn't deserve the abuse she is subjected too. Most everyone that uses RLT will not post on it for fear of the hostile atmosphere being staged. Which was obviously the goal all along.

It's no wonder this forum is quiet. Most places like this should be bustling; e-mail support groups are a little less spontaneous yet there's a group running 7000 strong that is heavily moderated.

I have a motto that I've lived by: Attitude determines altitude. It can mean anything you want. Mostly it's meant a happy life for me. I hope the same for you, you seem very angry right now. Perhaps it's your pursuit of KNOWLEDGE for POWER, or something. I don't know.

I look over at my dear husband's smiling face as a write this, and I want to just walk away. My life is happy, I am successful and fulfilled. So, why do I remain? Out of a desire to help, and get help, with Rosacea. The reason we're all here I suppose.

Twickle Purple

-----

Some Q+A's (http://www.emersonww.com/LaserFAQs.htm)

Q. Are there any negative effects from LLLT?

A. In all the years that low level lasers have been tested in research and clinical applications, no adverse side effects or negative impacts have been reported. This is why the U.S. Food and Drug Administration (FDA) classifies lasers like the Respond Laser Therapy Systems as “Non-Significant Risk” devices, requiring a minimum of safety precautions. The only precaution is that which discourages direct viewing of the laser beam. Care should be exercised not to stare into the laser beam or to point it at the eyes, and the use of safety glasses is recommended.

Q. How long have low level lasers been used for therapy?

A. Low level lasers have been used by doctors in hospitals and clinics in Europe on both humans and animals since the early 1970’s. In fact, the first studies reporting positive effects of laser on wound healing in rats were reported by the Hungarian researcher Andre Mester as early as 1968. In the United States, therapeutic lasers have been used by veterinarians since the late 1970’s. Just recently the U.S. FDA has given marketing approval to laser therapy devices for human use, beginning the trend to widespread use of LLLT in the United States.

Q. In simple terms, what does LLLT do?

A. A huge amount of research data has been collected on the effects of laser therapy (over 2000 double-blind studies) both in laboratory and clinical settings. The following excerpts demonstrate some of the most significant results: (Check the bibliography if you would like to do some in-depth reading.)

1. Wound healing is significantly improved by low level laser therapy, even non-healing wounds, thought to be due to the increased level of collagen brought about by laser treatment. Collagen, the chief constituent of connective tissue, is recognized as the most important ingredient in wound healing. See Dr. Andre F. Mester and Dr. Adam Mester, LLLT and Wound Healing, John Wiley and Sons, Ltd., 1989.

2. Increases in blood flow by means of capillary and arterial widening of the lumen of blood vessels, vasodilatation. See Dr. Toshiaki Kami, Effects of Low Power Diode Lasers, Annals of Plastic Surgery, Vol. 14, No. 3, March 1985. (Dr. Kami’s work also showed that the laser light significantly increased the formation of new capillary paths in treated areas, which resulted in increased circulation.)

3. Marked improvement in re-establishment of the lymphatic system after trauma, resulting in reduction of swelling. This is due to the evacuation of dirty proteins by the regenerated lymphatic vessels. (See Dr. P.C. Lieven, The Influence of Laser on the Lymphatic Systems, Presented at the American Society for Laser Medicine and Surgery, Eight Annual Meeting, Dallas, Texas 4/25-4/28, 1988)

4. Laser light stimulates release of the body’s own killing chemicals such as endorphins and enkephalins Facilitating natural, long lasting pain relief. Dr. Wolfgang Rauermeister, Director of Pain Control Center at Parkwood Hospital, Massachusetts, USA has provided the best explanation of these pain reduction capabilities:
“The laser light stimulates the release of the body’s own pain killing chemicals such as endorphins and enkephalins from the brain, adrenal glands, and other areas, thus facilitating long lasting pain relief.”

Low level laser therapy is an effective therapy, working in harmony with the body’s own healing and relieving mechanisms. There are no harmful side effects reported from laser therapy.

----------

An LED and a laser device using 660nm wavelength light will create the same response in the body. The difference is coherent and non-coherent light.

Here's a bit from this site (http://www.redlighthealing.com/facts.htm) that explains it succinctly:

Monochromatic single wavelength light can only be produced in two ways - Low Power/Cold Laser (coherent light) or with a powerful light-emitting diode, LED (non-coherent light). Although much of the low power laser research is directly applicable to the use of LED's, LED's non-coherent light is entirely safe.

Dr Tiina Karu, of the Laser Technology Centre of Russia, found in the late 80's that the non-coherent light (LED's) was found to be as effective as coherent light and without the risk associated with cold lasers.

clsykes00

26th October 2006, 03:37 PM

Trey, if anyone makes "horrible unfounded and illogical accusations", it is you. You spent months badgering anyone who posted in favour of RLT with a string of false accusations and endless demands for information which no one could supply, and you knew it? Have you forgotten how in just one of your posts, you asked me 23 questions?! The thread is still out there for anybody to check.

Time and again you kept bringing up Dr Crouch's name to back your claims

And now you've come back to stir the pot all over again, joining a thread started by Jonathan Gamache, who was banned from the board for posting his own faked treatment reports on RLT. (Trey: abbreviated to save room; see above for full quotes)

You and I both had no evidence as to whether Dr. Crouch miscommunicated his observations. His miscommunication is not my fault, nor is it yours. If you knew it was a miscommunication then, you should have used it to your defense then. But, by you using them now just shows once again that you misrepresent the events that occur. This is such a horrible personality trait, and I contend causes a more aggressive tone towards you when people respond to you. You would be served well by correcting this bad personality trait of yours.

Endless demands for information? And why is that wrong? Why should I feel bad for asking for scientific information? The RLTers kept providing me with useless science that had nothing to do with rosacea, but for some reason I along with everyone else waiting for more science should be satisfied with eroneously, misplaced, and very misleading information.

Here are few quotes from you by the way:

Peter Quote: Of course we don't have any clinical evidence! Don't you think if we had this we would have displayed it by now. Why do you think a clinical trial is going to be held at Hammersmith Hospital! Just for the fun of it?

Peter Quote: I have used a form of RLT for 8 years now, so if anybody should be aware of potential side effects, especially long term ones, then it would be me. Sit yourself in front of one of the many approved LED lamps and try and work out who could ever possibly get badly burnt by such a gentle light source.

Trey: Huh? Wait, are we supposed to be using RLT because you have had success? Why in the world would a trial be required if its irrefutable in your mind the benefits of RLT with no side effects? Why would you need science? Do you think people require science for proof? Do you think its unfounded and illogical that they would need that?

Peter Quote: My advice to others is simple with RLT. If you are really want to try it and can afford the initial outlay then give it a go. The only risk is to your pocket if you do not respond.

Trey: This is just unscrupulous and serves as the whole reason people like Steve and I think that you need to be more cautious. Without trials, statistical data, and science, HOW CAN YOU POSSIBLY STAND BY THIS STATEMENT?

Peter Quote: Well you don’t have to be a genius to work out what happened in the past and what Trey is trying to instigate again but of course hiding behind the wording of questions centred around “I am really interested in RLT but ……………”

Trey: As a rosacea suffer, as said above, how could I possible not want more proven treatment modalities, but for some reason, you have this notion that every precautious person about RLT is out to get RLT. This is an illogical, unfounded attack.

Peter Quote: No you are not a Doctor obviously but we can now see what your background is and why you have the Nase connection. No wonder you want to know so much about RLT and continually try and bring it down as a viable treatment option. No wonder you defend Nase to the hilt on every post you are involved in. Surely if we discovered through an official clinical trial, that all rosacea sufferers would benefit from using RLT at home then you could be without a job or at minimum it would certainly eat into your Rosacea market share. Could it be that our little red light machines, which can be used in the comfort of ones home could threaten the multi-million dollar industry manufacturing laser and IPL machines, and the doctors who are making fortunes from performing laser and IPL treatments at so many hundred dollars a time, and anyone who gets paid to promote them - well, these are only people with a financial incentive here.

Trey: Illogical and unfounded claims by you once again. I do own a couple of medical device suppliers, but none that remotely sell into the rosacea market. What companies do I own Peter since you think what you say is fact? Prove to me that I have economic interests. And by owning a couple of EMBEDDED medical device companies, how am I supposed to be connected to Nase? You have to go a little deeper but your premise IS EXTREMELY WEAK (better yet, ILLOGICAL AND UNFOUNDED ONCE AGAIN)!!!

Peter Quote: the clinical red light trial (LED) for rosacea he was planning to start earlier this year and what was the current position. Unfortunately it hasn't started yet but he is planning to commence after the summer at Hammersmith. Pointless starting during the summer because of peoples holiday's etc.

Trey: We should always believe you and never question you because what you say always comes to fruition.

You should be ashamed Peter, attacking people who have been misled in the past by doctors for not putting full faith and trust in unknown people on the Internet. I have complimented you on your work regarding RLT, but you insist on fighting. And, you wonder why you get so much heat. You get it because you are misleading and illogical and to boot, like fighting.

Steve95301

26th October 2006, 05:54 PM

TP, I've been ignoring you but you seem to be honestly evaluating the literature, so I'm not going to be antagonistic or anything but respond to the point you've made.

You quoted a paragraph from one site but when I looked, it struck me that the paragraph right below it was more relevant.

Monochromatic single wavelength light can only be produced in two ways - Low Power/Cold Laser (coherent light) or with a powerful light-emitting diode, LED (non-coherent light). Although much of the low power laser research is directly applicable to the use of LED's, LED's non-coherent light is entirely safe.

Research has demonstrated that a single wavelength of 660nm stimulates the production of cell tissue and quickly promotes the demineralization of bone tissue, regeneration of skin and blood tissue in that area.

And I applaud the fact that you included this in one of your quotes:

Increases in blood flow by means of capillary and arterial widening of the lumen of blood vessels, vasodilatation. See Dr. Toshiaki Kami, Effects of Low Power Diode Lasers, Annals of Plastic Surgery, Vol. 14, No. 3, March 1985. (Dr. Kami’s work also showed that the laser light significantly increased the formation of new capillary paths in treated areas, which resulted in increased circulation.)

That is very evenhanded of you, to include that.

Now I'm not saying that's conclusive, it's not. There are RLT benefits and RLT risks. I don't know how many of those things offset each other, or to what extent.

But I will say that circumstances are not all created equal. I think that especially post-IPL, the risks are much greater than under normal conditions. At the very, very least, caution is indicated. People should by all means ask their doctors. If their IPL docs aren't knowledgeable about LEDs, they should research it for themselves.

Or -- and this would be preferable -- they can come to this forum and ask honest questions about possible side-effects, and be presented with a balanced, instead of overly-optimistic, viewpoint.

Twickle Purple

26th October 2006, 06:52 PM

Or -- and this would be preferable -- they can come to this forum and ask honest questions about possible side-effects, and be presented with a balanced, instead of overly-optimistic, viewpoint.

I can appreciate that. I've posted on my experiences. I have stressed that folks that are interested should research it themselves. I can't attempt to offer an opinion on this stuff, because I don't know why it's working. I do my best to find information that explains (or can infer an explanation for) what it is that I'm experiencing.

About the side-effects, a lot of users mention the initial flushing, but, also they say it is brief and passing and that continued use brings the benefits. I know that the Metrocream was iffy on my skin for the first few trys. But I'm glad I stuck to it.

One thing I have not mentioned because it is relevant to my composition, is that I have a vasular condition. I experience chronic nose bleeds that need regular cauterization. I've been that way my whole life and I am fortunate that I have low BP. Anyway, when I first started with the RLT on my face my nose felt funny, it was the blood coming to the tissues, it passed 10 minutes into the treatment. But for the first 3 sessions I had a nose bleed! Little ones thankfully but it was certainly the RLT that caused it -- again I'm defective in that area, so it's me. However, I had read so many posts that this initial side-effect is expected and transient, and since the sensation did pass each time, I stayed with it. I'm really glad I did. The sensation no longer comes unless I go up in strength (e.g., when I use pulse or when I first switched to 660/880 panels) and then no longer occurs at all after the second time at the new level.

The outcome is that something good IS happening. My nose tissue is really healthy and things that normally cause a nose bleed don't anymore. And my facial flushes have drastically receded. I have a balanced view on the reasons for my rosacea and flushing improvement: Gemini, Metrocream and RLT. I realize RLT isn't a cure, and it is much more tedious than taking pills or applying creams, but it works -- I just don't know why. Someone mentioned healing vessels, I think that's right.

Steve, I'm a real lemon when it comes to my skin. My enthusiasm at finding something that works is hard earned. I do not try to lead anyone astray. I have looked at the whole picture and I present the links I find. People can take from them what they want. All I can do is share my experience.

I have posted one before and after picture, of an area of skin which is not Rosacea, but intractable eczema -- this covers my whole body. Steroids have been a huge contributor to my rosacea and there are presently no options for me other than continued steroid use. But, topical steroids have limited efficacy, protopic and elidel are ineffective altogether and systemic drugs terrify me so I refuse them. The purpose of this example was to show the difference one treatment made there. This was 100% RLT. For my face I have had and still use other treatments, but the rash picture shows a result that is 100% derived from the RLT. As I am sure you can appreciate, this made me bloody ecstatic. I had nothing to lose trying RLT, the money for the machines isn't alot for me and I am so glad that I took the plunge. I just wish I could get one of those tanning bed type things all done up with 660/880nm lights, it would be a great time saver. I am looking into this. ;)

I do get what you are trying for. Please understand where I am coming from.

Twickle Purple

Steve95301

26th October 2006, 11:19 PM

That's a fair assessment. I can see that we both want the same thing: to be able to post about our experiences.

In my case, it's my experience researching this subject. I think I can make a valuable contribution in this area, so it's quite frustrating for the topic to be "frowned upon", however unofficially.

I also understand the excitement of finding something that helps. The first impulse is to share it, which is the right thing to do. I've always done that, and I hope everyone else does too.

That's why, for a long time after I began to think things were becoming lopsided, I didn't say anything. Then I started slowly, making a few counterpoints here and there. The repressive reactions I got really ticked me off, though.

Anyway, I understand where you're coming from also. I'm sure we'll disagree again (especially since I'm going to post the sum total of my thoughts on RLT in one enormous post, just to get it out of my system), but that's okay. C'est la vie.

Twickle Purple

26th October 2006, 11:37 PM

Très bien, You can post your thoughts, and I will post my experiences.

I think the reactions may have more to do with derogatory language directed towards RLT users then the making of enquiry, at least in my case for sure. This has been my objection all along. It's all good to disagree, but I hope that we can all be more respectful going forward. I will put my best foot forward from here on.

Steve, I respect that you have a differing opinion on RLT. I won't comment on what you post, you are well entitled to safely state your opinion on it. The beauty of all this is that science will eventually catch up to us all and settle our minds one way or another.

So until we get unbiased (non-Nase) studies, like the one to be conducted by the esteemed Dr. Chu, we are mostly spinning our wheels.

Just a quick added note: I have it on credible authority that there is a movement to discount my entire experience as due to steroids. That's all well and good, but I have a flushing disorder most definitely exacerbated by steroids and allergy and menopause, but we all have reasons for our flushing, we just haven't all discovered them. I haven't quite discovered all mine yet though. Sometimes just blinking is all it takes. I will happily remove myself from posting on the subject if the focus goes awry. I have nothing to lose and nothing to gain from any of this.

I will offer one bit of advice, if I may: Don't fall into the trap of confusing Laser negative effects with low level light though. RLT has the same benefits as laser just none of the drawbacks, according to Dr. Tiina Karu anyway. I trust her on this one.

Cheers,
Twickle Purple

natalja

27th October 2006, 10:47 AM

Ok all, guys mostly: can this discussion perhaps finally end by now? You’ve all been over and over again on this topic, with the same outcome every time.

Red light therapy works really well for some rosaceans. There are sufficient reports of this. We all can name some forum members who improved with it. There is no scientific evidence yet for it’s use for rosacea. The fact that it helps healing wounds might indicate that it promotes angiogenesis, but we don’t know exactly what causes rosacea either, and RLT’s anti-inflammatory actions might just as well improve the condition. As I said: there are plenty of testimonials from rosaceans who use it with success.

Peter has had rosacea for years and has had great success with RLT. I know him myself personally and can tell every one of you here he is a genuine and sincere guy, who beliefs in RLT. Like I have success with mirtazapine and try to inform people here about this drug when I have a chance. And like I had a big time worsening of my rosacea after my first IPL treatment, and warn people for this and try to prevent them for making the same mistakes, I can see that others like to do the same. Although so far I haven’t heard on the forums from people who actually USED red light themselves and got worse and want to warn others..

We can go over and over again about whether RLT might or might not be good for rosacea, but as long as there is no evidence and no trials, this is all speculation and repeating the obvious. Peter can’t proof that RLT has no side effects, yet, and Trey, Steve and others can’t fully discredit RLT, based on all the good reports that are out here. I think most people by now must be aware of the possible advantages and disadvantages of it, and should either give it a proper try if they have the will and money for it, as Peter said, or wait till proper studies have been done. I myself am experimenting with different medication all the time because conventional medicine doesn’t work for my rosacea and neuropathy lately. That comes with trials and errors unfortunately, but the same is for RLT.

Since everything seems to have been said about it by now, can we perhaps just close this discussion for now? Stop bickering and scoring points, especially between the lads here? It all comes down to the same conclusions, like I just mentioned, as long as we need to wait for the trials.

Natalja.

clsykes00

27th October 2006, 01:51 PM

Although so far I haven’t heard on the forums from people who actually USED red light themselves and got worse and want to warn others..

http://forum.rosaceagroup.org/viewtopic.php?t=4227&start=30

Can anyone let me know if hozer2k got better?

Just want to make sure this information is correct.

Thanks

Steve95301

27th October 2006, 02:24 PM

Natalja, I disagree with your assessment of the situation.

Peter can’t proof that RLT has no side effects, yet, and Trey, Steve and others can’t fully discredit RLT, based on all the good reports that are out here.

I am not trying to "discredit" RLT. When I discuss accutane side-effects, am I trying to "discredit" accutane, or am I just honestly sharing information because I think it will help?

Unfortunately, I may have failed to get my point across.

I'd just like everyone who reads this thread to at least understand my position. So, here's the take-home message:

======================================
I't's not about trying to prove anything one way or the other.

It's about the freedom to discuss different angles of a complex issue.
======================================

My position is that side-effect discussions have always been sabotaged by well-meaning, but overly-optimistic people. I argue that side-effects are a completely legitimate topic for discussion. I only gave the angiogenesis example to prove that point. Don't think that that's my only argument for side-effects, just because it's the only one that I talked about. There's more, but I only gave that one because it's all I needed to prove my point that the subject is legitimate.

I think where people may get confused is the two things are related to each other:

The repression of scientific discussion is a result of the intolerant atmosphere.

We can go over and over again about whether RLT might or might not be good for rosacea, but as long as there is no evidence and no trials, this is all speculation and repeating the obvious.

Incorrect. I have plenty of thoughts on the matter that have never been mentioned on this forum, and they're by no means "obvious".

The evaluation of evidence is important PRECISELY BECAUSE there are no trials for rosaceans. We must make our best educated guess. And educating ourselves requires the freedom to discuss the issue from all the angles.

(P.S. I'm not good at knowing how others will interpret my tone, so please don't take offense. It's not intended that way. I just want to make the issue clear. You seem very nice and you have a very nice website, I've read through it before.)

Twickle Purple

27th October 2006, 03:55 PM

The repression of scientific discussion is a result of the intolerant atmosphere.

I don't agree. My posts on RLT are chalk full of scientific links and quotes. Healing with single light therapy is a very good thread, I began posting on this there, but the other RLT threads have plenty as well. IowaDavid posted a lot, as did Kristen (Banshee), both are very intelligent. long-term RLT users.

Here's a terrific thread, full of scientific info and discussion:

http://forum.rosaceagroup.org/viewtopic.php?t=3872&postdays=0&postorder=asc&start=0

There has been no repression of scientific discussion. The only intolerance I have seen has been towards the people that use and post on the subject. There has been a fair bit of obfuscation about this. It seems to me that some posters may not like the discussions as they do not follow the theme they attempt to set forth.

It is great that we are going forward with a mood of respect and tolerance now.

In this forum, and all others that I've found, it has been the experience of the great majority that use RLT that it has been a positive experience and beneficial to their skin. These are all Rosacea sufferers. It's an exceptional testament. My complaint has been consistent; don't attack the people.

Trey, it is nice to see you posting. I really mean that. I hope that you can continue on other subjects as well.

--

I look forward to an actual discussion, instead of this discussion of the intrepretation of discussions.

Cheers,
Twickle Purple

27th October 2006, 05:36 PM

I think that especially post-IPL, the risks are much greater than under normal conditions.

Quite possibly so.

Two highly thought of IPL practitioners have advocated the use of RLT post IPL:

'Dr Steve Johnson and I have been collaborating to address
manyproblems the patient with rosacea faces on a daily basis. One
of the most common and disturbing is the problem of flushing, often
painful in nature. The ultimate answer to this, of course, is
multiple IPL/PHOTOFACIAL treatments performed 2 to 3 weeks apart.
The papules and pustules and/or ocular rosacea can usually be
controlled with subclinical doses of antibiotic to prevent the
development of resistance bacterial strains, prevent yeast
overgrowth, GI upset and photosensitivity. This is best obtained
with 20mg of doxycycline(Periostat) twice a day. Occassionally
Noritate or Finacea can be added for topical treatment. Between
each IPL all attempts should be made to minimize flushing. Our
belief is that allepisodes of flushing generate the production of
new vessels(angioneogenesis)and this even includes pre-flushing for
most IPL treatments.
A good antiflushing protocal might include some or even all of the
following:
1. Pure Aloe Vera Gel(no alcohol)kept in the refrigerator and
applied cold and every couple of hours if the face is hot and
flushing badly. Rite Aid Drug carries one wirh a pump dispenser.
2.Zebeta(Bisoprolol)2.5 to 5 mg at bedtime
3.Hand held 660nm LED light 42-84 light array from Elixa.com.
This can be carried in a purse, briefcase, backpack etc but requires
an electrical outlet. Can be used 15 to 20 minutes twice a day and
also 5 to 10 minutes during an acute flushing episode.
4. Microdose of Clonidine, ie .025mg at time of a severe flush
but only once a day. There must not be a history of heart, kidney
or liver disease and the blood pressure should not be too high or
too low.
5. Sun block at all time when outdoors and re-apply often
6. Doxycycline 20mg twice a day
NOTE: All medications should always be approved by a medical doctor
and monitored regularly

I encourage Dr Johnson to further comment on the above since this
was a joint effort. I thank him for his expertise and as he has
mentioned on this site prior he has dealt with rosacea personally
and has a wealth of knowledge to share.

information does not constitute medical advice. Any individual
who believes they are suffering from any medical condition,
including, but not limited to rosacea, should seek treatment from a
licensed medical physician who is qualified to diagnose and treat
the particular condition. N. Soldo, M. D. '

natalja

27th October 2006, 06:07 PM

Hi Steve,

No offence taken :wink: And thanks for the compliment on my weblink.
Well, perhaps I didn’t express myself good enough; I didn’t mean in any way that there should be a limitation on an open discussion and sharing of opinions concerning any treatment modality. Including RLT. Of course everyone is free to share his or her opinions, experiences and concerns. But it seems to have become sort of a battle between pro’s and con’s right now, and similar arguments are used in several threads. That’s at least the impression I get, but I don’t follow every single thread about it, so I might completely miss the nuances here.. As soon as something positive is mentioned, some people will follow with warnings and doom scenario’s, and vice versa. That’s what is bothering me, not the fact that there are risks discussed here and possible side-effects etc.

From what I read from Hozer2k he got increased redness from RLT. Great that he tried it and shared his experience. Too bad he seemed to get more redness. But a lot of people reported very good experiences and unfortunately it is still a matter of trial and error for each and every one. Like with every medication.

best wishes, Natalja.

Steve95301

28th October 2006, 01:37 AM

I think that especially post-IPL, the risks are much greater than under normal conditions.

Quite possibly so.

Two highly thought of IPL practitioners have advocated the use of RLT post IPL:

3.Hand held 660nm LED light 42-84 light array from Elixa.com.
This can be carried in a purse, briefcase, backpack etc but requires
an electrical outlet. Can be used 15 to 20 minutes twice a day and
also 5 to 10 minutes during an acute flushing episode.

And you know, this is frustrating for me. On the one hand I appreciate their input, but on the other hand, I need details. I want to know why they don't think the angiogenesis factor comes into play here.

Of course, many things a doctor could try to explain to me would be over my head, so there's no point. But I don't think this is one of those cases; I think it should be possible to explain one's line of reasoning in this area without too much confusion.

I'd just like to get details (and by details I mean high-level details, not nitty-gritty stuff, although that's welcome too). So while it adds to the puzzle, it's kind of a tease for me to read it, because I can't take it any further.

porcorosso

28th October 2006, 06:39 AM

Damnit... please disable anonymous posting ! I've seen trolls on various forums who were literally unstoppable, posting several times a day, every day, for years !

RLT works for me, not 100%(I still look somewhat crap) but the cashier at my local supermarket is hitting on me... would not have happened a few months ago !

As scientifical as it gets :D

IowaDavid

28th October 2006, 07:10 AM

[quote="GJ"][quote=Steve95301] On the one hand I appreciate their input, but on the other hand, I need details. I want to know why they don't think the angiogenesis factor comes into play here.

Of course, many things a doctor could try to explain to me would be over my head, so there's no point. But I don't think this is one of those cases; I think it should be possible to explain one's line of reasoning in this area without too much confusion.

I'd just like to get details (and by details I mean high-level details, not nitty-gritty stuff, although that's welcome too). So while it adds to the puzzle, it's kind of a tease for me to read it, because I can't take it any further.

Steve--we just don't have the data yet. Of course angiogenesis and increased bloodflow would be the last thing a rosacean wants to provoke in daily sessions. My guess--and I'm not a doctor, just an anecdotal witness--is that the anti-inflammatory action of RLT halts the inflammatory progression and may very well push it back, over time, to pre-rosacea or even a non-symptomatic condition.

If you've got telangiectasias, you'll need to get thermal laser therapy. I know this disease affects everyone differently, but, I've spent literally hundreds of hours under my RLT array. I'm not a walking double-blind placebo study, but the tone of your posts reminds me of the Church persecuting Galileo. To our best knowledge, RLT is benign at worst, and very helpful at best. I understand you want hard studies and data, but we just don't have it yet. Not sure why you and clsykes are so worked up over this.

If you don't want to try RLT, just forget it and do what works for you. This isn't a proving grounds for medical doctors; it's a forum for fellow sufferers to share experiences.

clsykes00

28th October 2006, 11:01 AM

Not sure why you and clsykes are so worked up over this.

ID, not trying to be argumentative, but I feel this has been more than sufficiently explained. This kind of statement begs for repeating arguments, something that I do not necessarily care to do often.

Best,
Trey

IowaDavid

28th October 2006, 04:27 PM

clsykes00

28th October 2006, 07:15 PM

Fair enough.

We just don't see this sort of ongoing, endless debate in regards to, say, low-dose accutane. Can't say there have been many studies regarding that and rosacea, either. But, if people want to wait on studies, it's their choice--perfectly reasonable.

I would say to the contrary. Many studies about low dose accutane and rosacea have been conducted by well-known derms. These studies were not conducted in a formal trial that would require FDA approval, nor were they conducted with the rigor that a statistician would require. But, studies do exist, and again, a few of these studies have been performed by some of the most well known derms worldwide.

Twickle Purple

28th October 2006, 07:47 PM

clsykes00

28th October 2006, 09:32 PM

Quite right, IowaDavid. The mechanism of action is unknown for both Metronidazole and Accutane with respect to Rosacea.

Accutane: (http://en.wikipedia.org/wiki/Isotretinoin)

The exact mechanism of action is unknown

Metronidazole: (http://www.skintherapyletter.com/2006/11.2/1.html)

The mechanism of action of metronidazole in the treatment of rosacea is unclear.

Same with Elidel and Protopic.

We are prescribed alot of stuff that is not understood. Generally, recommendations for these medications are based on an observed improvement. Proper studies are sadly lacking.

Well, first, I do not want to make this into an accutane vs. RLT discussion. From my vantage point, RLT is at its infancy, and I for one want to understand both the positives and negatives of the treatment.

But, if you want to know the mechanisms by which accutane works for rosaceans, then here you go:

Accutane's effect on the five subtypes of rosacea all are accomplished by different actions of accutane --which of course makes it confusing to everyone.

1. With rhinophyma, a huge part of accutane's actions are shrinking sebaceous glands, removing long standing fluid via lymph system, downregulating fibroblasts which trigger skin thickening, etc.

2. With Papulo-Pustular type, much of accutane's actions are related to

a. A generalized anti-inflammatory action on inflammed dermal skin and inflammed blood vessels.

b. More specifically, it helps normalize and release cell adhesion molecules from the inside of blood vessels. These are inflammatory flags that send out a signal to recruit neutrophils, the cell adhesion molecules then open up the blood vessel like a gate and let the neutrophils migrate up to the epidermis to cause papules. So, you remove CAM and you remove the gates -- the neutrophils dont go through.

c. There is a massive build up of neutrophils outside the blood vessels at most stages of rosacea (note: article calling rosacea a neutrophillic dermatose), well, accutane tells the neutrophils to pull up camp and move along.

In essence, rosacea sets up a perfect pro-inflammatory environment that makes it hard to break the cycle after years of this inflammation. Accutane, in essence, knocks down this inflammatory environment to
pre-rosacea levels (in general) and gives many a fresh start. You still have the genetic predisposition, but you have undone the years of damage and now can control things much better. With 10 mgs, there is very little to no effect on the dermis thickness and very little effect on the epidermis. It may make some more sensitive, but as we all know everybody is unique.

Maybe this would be a better post for those interested in accutane...

Oh and here are just a couple of links to some studies:

http://web.archive.org/web/20030201112031/http://archderm.ama-assn.org/issues/v134n7/ffull/dlt0798-10.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6203275&dopt=AbstractPlus

See also (Plewig is very well known derm among derms):

Plewig G, Nikolowski J, Wolff HH. Action of isotretinoin in acne rosacea and gram-negative folliculitis. J Am Acad Dermatol. 1982;6:766-785

Plewig G, Wagner A. Anti-inflammatory effects of 13-cis retinoic acid: an in vivo study. Arch Dermatol Res. 1981;270:89-94

Hoting E, Paul E, Plewig G. Treatment of rosacea with isotretinoin. Int J Dermatol. 1986;25:660-663.

I also have been a patient of of the father of retin A, Dr. Kligman from the University of Pennsylvania, who also studies and prescribes accutane. for severe cases.

Rick

29th October 2006, 01:39 PM

I think this thread raises some very interesting issues concerning the degree of clinical evidence and causal inference needed to assert that a given treatment regimen "works" for rosacea.

I would suggest that accutane is well ahead of the curve -- there is no doubt that it controls rosacea symptoms in a significant number of sufferers. So I agree with Trey completely here. I am slightly less in agreement with assertions that we understand why it works. His second reference (from 1984) makes the claim that it is reduction of sebaceous glands that leads to this improvement. More recent papers mention (broadly) "anti-inflammatory" actions, which I personally tend to believe (I am a huge accutane fan), but I think are still a bit unsupported in my mind. I do not buy the accepted sebaceous-gland reduction argument for rosacea (because the accutane action on rosacea can be observed in a shorter time that it takes to impact seb gland activity).

On the other hand, the action of both systemic and topical antibiotics is not all understood in the context of rosacea, yet any derm will immediately prescribe them within 5 minutes to a patient presenting with modest rosacea symptoms. Why? Because there is some clinical evidence that they work. Not because anyone believes they understand why they work.

I see three classes here:
(1) Things that work anecdotally (e.g. RLT and some SSRIs),
(2) Things that work based on reasonably complete clinical studies, but with little understanding of why (e.g. systemic and topical antibiotics ), and
(3) Things that work in a clinical environment and for which there is some understanding as to why (e.g. accutane, and probably anti-histamines).

A related discussion is where clonidine and propranolol fall -- some would claim (3), but the clinical studies are lacking here. Wilkin's studies many years ago are still about the only studies available, and they were are hardly conclusive.

And where does IPL fall? Clearly it is well understood why it works. See Andrew Reid's blog for some recent mathematical modeling of IPL and laser mechanisms. But has it been "proven" clinically? Personally, I don't think so.

Why all the bickering over RLT? Just accept it in the context of (1), and hope that it moves forward to (2) or even (3). If it works for you, then go for it. If it doesn't, then it is no different than a ton of other rosacea regimens. And if you don't really care (like me), stay tuned for more evidence, either anecdotal or clinical ...

Rick