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Thread: Why is the RLT Trial taking so long?

  1. #1
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    Default Why is the RLT Trial taking so long?

    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)

  2. #2
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    Default

    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

  3. #3
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    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.

  4. #4
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  5. #5
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    Default

    Quote Originally Posted by Anonymous
    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>

  6. #6
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    Default Millee

    Quote Originally Posted by Anonymous
    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!

  7. #7
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    Since you seem to care so much, give him a call.

  8. #8
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    Quote Originally Posted by Munch Ausen
    Quote Originally Posted by Anonymous
    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>
    I agree. IF they work. Sounds like the placebo effect plays a big role.

  9. #9
    CHU CHU
    Guest

    Default Re: Millee

    Quote Originally Posted by Anonymous
    Quote Originally Posted by Anonymous
    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?

  10. #10
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    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/viewto...=4346&start=45

    Quote Originally Posted by Peter
    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

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