Attention, please. All light therapy users...

[Twickle Purple]

"Angiogenesis" is brought up as a deterrent to try RLT, and it is conjectured that we do not want to discuss the elephant in the room (http://forum.rosaceagroup.org/viewtopic.php?t=5187&start=30)'.

To address this, and for the benefit of the folks looking into light-based therapy, I ask that any folks that have used light-based therapy for period of at least 8 weeks, in a regular and committed fashion, please share their experience. If you also were using another treatment, topical or oral, concurrently please state that. Shorter durations are not included here as there is often an increase of flushing during the initial acclimation phase and while many push through that (and find it passes within a week), others become discouraged and give up. However, if you feel strongly one way or the other on your experience please do post.

It would be very helpful if you could answer the following questions. If you think of any question that has been missed please add it so the folks following can include answers for that.

Hopefully this will provide an even better picture of what we are experiencing with RLT/LLLT.

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

1. What are your Rosacea Symptoms (i.e., flushing, redness, papules, pustules, swelling, etc.)?

2. Which colour light do you use (i.e., red, near infra-red, red+blue combo, etc.)?

3. How many times a week do you use it?

4. How long have you used it?

5. What else (if anything) are/were you taking or using to treat your rosacea symptoms during this period?

6. Do you have see an increase, decrease or no change in the number of visible blood vessels (telangiectasia) on your face?

7. Do you see an increase, decrease or no change in the redness, flushing, swelling, papules or pustules on your face?



--

Thanks.

[Steve95301]

This is a great idea, I love organized information. I would even add more questions. (So the thread doesn't get sidetracked, You can PM me to see how I'd tweak it.)

I also like asking for replies in the thread, instead of creating a voting poll, because "guests" can vote and you can't really trust the numbers.

[Twickle Purple]

Please add any questions you think would be helpful.

Thanks.

[Steve95301]

"Has the rate of vessel growth in your face increased, decreased, or stayed the same since you began light therapy?"

[Twickle Purple]

1. What are your Rosacea Symptoms (i.e., flushing, redness, papules, pustules, swelling, etc.)?

2. Which colour light do you use (i.e., red, near infra-red, red+blue combo, etc.)?

3. How many times a week do you use it?

4. How long have you used it?

5. What else (if anything) are/were you taking or using to treat your rosacea symptoms during this period?

6. Do you have see an increase, decrease or no change in the number of visible blood vessels (telangiectasia) on your face?

7. Do you see an increase, decrease or no change in the redness, flushing, swelling, papules or pustules on your face?

8. Has the rate of vessel growth in your face increased, decreased, or stayed the same since you began light therapy?

[Munch Ausen]

9. Have you been burnt from using RLT?

[Steve95301]

Do you feel that light therapy has stimulated (http://en.wikipedia.org/wiki/Light_therapy) ATP (http://www.rosacea.org/rr/2005/spring/article_2.php) production for you?

[Twickle Purple]

Do you feel that light therapy has stimulated (http://en.wikipedia.org/wiki/Light_therapy) ATP (http://www.rosacea.org/rr/2005/spring/article_2.php) production for you?

Questions #6 and #7 encompass this.

[Steve95301]

Questions #6 & #7 encompass this.

Yes that's true...

I think the best question to test my particular hypothesis (is that what we're doing?) would be: "After ~8 months, if you stop the treatment, how quickly do you regress, if at all, and if so, are you better than, worse than, or the same as you were when you started?"

You know, if a person can afford laser treatments, blood vessels can always be removed anyway. I paid a lot of money to have mine removed, so just the thought of helping them grow back is too much of a barrier. And really, the best way to find out about angiogenesis would be to ask one of the doctors who uses RLT.

[Twickle Purple]

Questions #6 & #7 encompass this.

Yes that's true...

I think the best question to test my particular hypothesis (is that what we're doing?) would be: "After ~8 months, if you stop the treatment, how quickly do you regress, if at all, and if so, are you better than, worse than, or the same as you were when you started?"

You know, if a person can afford laser treatments, blood vessels can always be removed anyway. I paid a lot of money to have mine removed, so just the thought of helping them grow back is too much of a barrier. And really, the best way to find out about angiogenesis would be to ask one of the doctors who uses RLT.

So then you have a problem with the questions being answered by the people that use RLT? Hmmm, it seems to me that you have made up your mind on this already.

Well, this isn't for you. It is for the rest of the still-open-minded folk out there. I hope the answers that come from the people that use this treatment will help them make a decision -- one way or the other.

The consistent thing I have noticed is how amazed people are with how well it works, and the positive difference it has made for them. It is gentle, healing and beneficial in so many ways, the same cannot be said about laser. I've been treated with both.

[Peter]

Hello TP

More than happy than to participate in this if it helps others but haven't we published all this before in other threads? I get to the stage where I just want to say to people - "look if you think it will help you then the only way to find out for sure is to try it." As we do not yet have any scientific data to prove it's beneficial effects than we have to rely upon anecdotal information from genuine sources but I'm sure not even that is enough to satisfy some.

There are a fair few people on the RS Group who also use RLT so it might be worthwhile checking with David Pascoe as to whether they could run a similar survey amongst the users of this treatment in parallel with yours.

Personally I would add:

What type of lamp do you use - LED or fluorescent tubes?
How long are your sessions?
Does the time of day you use the lamp make and difference?
Did the distance from the unit make any difference?
Does your skin feel calmer after your session?
Since using RLT can you now tolerate some previous triggers better?
Do you cleanse your skin before use?
Do you usually have sensitivity with hot sun, artificial lighting, computer screens etc?

I suppose the list is not exhaustive but just my views.

Good luck and thanks for taking more time out to do this.

Peter

[Twickle Purple]

Thanks Peter. Excellent additions to give a fuller picture.

This thread was created for a specific reason: I was fed up with the ongoing conspiracy codswallop that we do not talk about 'the elephant in the room.' :roll: We talk about what we experience, and it appears that angiogenesis is not discussed because it is not experienced. That would be a logical conclusion, eh? Since we talk about what we experience -- good or bad -- with everything else. But, wait maybe that's part of the conspiracy? I'm still trying to figure out how we benefit from this deviant behaviour. It's supposed to be 'transparent' but I must be blinded by the LED light.

The purpose of this thread was to put the question directly -- openly -- to folks. That the question is no longer palatable because somehow we do not fit the parametres of being sufficiently qualified to answer it... well that just makes me chuckle.

But, it's out there now. One elephant, gone.

[Peter]

No problem TP.




I was fed up with the ongoing conspiracy codswallop that we do not talk about 'the elephant in the room.

Me and you both. I am sure some people would like it to cause angiogenesis so that it confirms their theories and what their internet searches appear to throw up. Well to my knowledge and experience RLT doesn't cause this if you view the anecdotal evidence we have available so far. I quizzed Tony Chu about this just over a year ago when Nase was up to his tricks and his reply to me was "I have seen no data on angiogenesis with red light".



But, wait maybe that's part of the conspiracy? I'm still trying to figure out how we benefit from this deviant behaviour. It's supposed to be 'transparent' but I must be blinded by the LED light.



As you know last week I tried to address this nonsense, offer some help and advice so that we could move forward but the one line reply I received back confirmed my suspicions that there is more to this than the angiogenesis factor. Needless to say we have been through all this before and I am not going to waste further time and energy repeating it.

Presumably you will finalise the finished list of questions and then invite feedback?

Thanks

Peter

[Capri]

If I can chip in here - I think we should have a start date in say a weeks time with a definitive list of questions, with a clear rule that discussion of points raised should be done in a seperate thread, or they will be moved to another thread. This way it will make it much clearer to read the results, and avoids the thread being sidetracked.

Meanwhile perhaps this thread could continue as a discussion of what questions should be in the survey.

Anyway, thats just my thoughts on it! Im 6 1/2 weeks into RLT so I will be reporting soon!

[Skywolf]

Capri,
I think that is an excellent idea. Keep the thread strictly to the questions asked. Not at all saying that there should be no discussion about it, ( I hate forums that have "no cross talk" rules) but there are already threads going on peoples personal opinions of RLT, and thats fine, but can lead to some confusing reading sometimes when a thread gets sidetracked. It would be nice to have a little data base, for lack of a better term, to see the results, good or bad, that people are having with this treatment without personal opions and biases getting in the way.
Thats my 2 cents anyway.

Laura

[Steve95301]

I have no problem with mods deleting my posts from this thread, to clean it up.

[Skywolf]

Sorry I may have not come across clear, my fault.
I wasn't talking about this thread here being strictly facts, but once the questions are established that THAT thread should be a reporting of what the treatment is or isn't doing based on people using the RLT for the given length of time. My bad, sorry.

Laura

[MARPUSBEAN]

I think its good to take the opportunity to have a wide spread of questions to get a real feel for what is happening.
Although its possible not everyone will be able to answer all questions, e.g no point in me answering angiogenisis as I have had recent IPL and would expect it to be 6 months before I see much in the way of new vessels, and even then I will have to figure is it worse or better than usual, and try and decide if the answer to that question relates to now doing RLT.
Makes it interesting!

[Twickle Purple]

Excellent suggestion Capri. That's the course of action then!

Steve, I think your posts should stay as it is your postings that consistently raise alarm bells. You are not alone in your angiogenesis question, it's important to address this openly and comprehensively.

How does this sound to everyone then: this will be a work-in-progress thread til May1st. This timeframe should be sufficient to allow users and non-users alike to put their thoughts into what they would like to see asked and answered. Then we'll put it all together into one clean thread of Q+As.

Thanks everyone!

[Peter]

Hello TP

The sooner we do it the better as far as I am concerned but other than that I agree with what is being proposed. Is it worth talking to the other group to see if the users there are prepared to answer the same questions?

Thanks

Peter

[Skywolf]

Peter,
I see no reason not to ask members of other boards [edited by Skywolf, bad spelling] to contribute to the thread. We are going to have to keep an eye on it for sure, but I think contribution from everyone is valid here.

Laura

[GJ]

8. Has the rate of vessel growth in your face increased, decreased, or stayed the same since you began light therapy?

As the concern is angiogenesis here, this, it seems, is the pivotal question.

Yet we cannot, I suspect, answer this pivotal question satisfactorily without recourse to fancy vascular scanning devices and what not.

We may note the pullulation of visible (broken) blood vessels but beyond that our observations carry little weight (in this specific regard).

It might possibly be the case that the anti-inflammatory effects of LLLT are such that any occurrence of angiogenesis is masked (for years).

It might possibly be the case that LLLT gives rise to additional vessels - but if these vessels are well behaved and properly functioning they may prove entirely benign.

And on and on.

Of course, I do not believe that RLT - at the levels of power used hereabouts - causes angiogenesis.

[Twickle Purple]

Thanks GJ.

I see my face everyday and can note the changes, one way or the other. My skin fluctuates constantly, I will always have rosacea, but I can make a reasonable determination if something is helping or harming. I had laser, I took/take meds and I use R/NIRLT to treat the symptoms I see. Which is what drives us, I think, treating the symptoms we see and feel. Please correct me if I'm wrong on that.

It has been positioned, often, that RLT is not a cure, it is a treatment. No matter what we do there is always a very strong possibility (even probability) that progress will be undone at some point in time. My experience is that RLT halts the progress, and heals the damage. It does not cure the disease, nothing does... yet.

[Peter]

Peter,
I see no reason not to ask members of other boards [edited by Skywolf, bad spelling] to contribute to the thread. We are going to have to keep an eye on it for sure, but I think contribution from everyone is valid here.

Laura

Laura

I think you misunderstand me. I am not asking for members of the RSG to come on here but merely see if their RLT users would like to answer the same questions on their site. We can view each others results and the more people that participate the better as far as I am concerned.

Peter

[Peter]

Hello GJ



As the concern is angiogenesis here, this, it seems, is the pivotal question.


Yes but as far as I am aware mainly from just one person.



It might possibly be the case that the anti-inflammatory effects of LLLT are such that any occurrence of angiogenesis is masked (for years).

Of course, I do not believe that RLT - at the levels of power used hereabouts - causes angiogenesis.

Of course I may be the exception to the rule but after 8 years of using RLT my skin is fine. My progress was monitored every 6 months by a top dermatologist and like both of us he does not believe RLT will cause angiogenesis but the reason for his trial is to investigate it's beneficial effects. If I suddenly stopped would my rosacea return with vengeance and I would have mass angiogenesis? I don't think so but I'm not ready to stop yet.

Thanks

Peter

[phlika29]

I'm sorry to say that the angiogenesis is also a question that I have and I'm sure there are others as well (such as YankesRthebest who started the thread the other day).

I have to say that I don't understand why having concerns over this is such a big issue. I have concerns over many forms of treatments such as the two latest treatments prescribed to me by Dr Chu, and until I no more I am not prepared to use either of them yet.

I think that it is healthy to be wary of any treatment and this doesn't mean that we are on Nases side or that we are doubting anyones experiences. I think its a shame that when this query is raised people are belittled. When did it become wrong to want to understand more.

Sarah

[GJ]

When did it become wrong to want to understand more.


399BC.

TP, you are of course better able than anyone else to determine whether something is helping or harming you. But, alas, the point stands that you are not able to determine - categorically - that the improvements you are seeing (pretty much all of us are seeing) are occurring without some concurrent angiogenesis.

Can anyone say, without fear of contradiction, that the growth of new, strong and fully functioning vessels is absolutley problematic for the rosacean?

[Twickle Purple]

I think that it is healthy to be wary of any treatment and this doesn't mean that we are on Nases side or that we are doubting anyones experiences. I think its a shame that when this query is raised people are belittled. When did it become wrong to want to understand more.

Sarah

I think you are introducing things that are out of place in this thread.

The purpose is to ask the question, to gather information from people. Someone said we do not address 'the elephant in the room.' Well, consider the elephant outed. What is wrong with talking about something that we are accused of avoiding?

No one has mentioned Nase, and it has been pointed out the Steve's angiogenesis concern is shared by others. Which I am sure you are of having read the entire thread before posting.

Who said it was wrong to want to understand more? Perhaps you can step back a bit from this -- as a moderator?

[Twickle Purple]

When did it become wrong to want to understand more.


399BC.

TP, you are of course better able than anyone else to determine whether something is helping or harming you. But, alas, the point stands that you are not able to determine - categorically - that the improvements you are seeing (pretty much all of us are seeing) are occurring without some concurrent angiogenesis.

Can anyone say, without fear of contradiction, that the growth of new, strong and fully functioning vessels is absolutley problematic for the rosacean?

Ah, yes, that is the dilemma then. If angiogenesis is occuring (which I suspect it is, in the form of new and properly functioning healthy vessels), and yet we are improving in areas of skin health and trigger tolerance then I would reason that there is much misunderstood about the role of angiogenesis in rosacea and red light therapy. All three not being completely understood anyway.

So my question to people really is: are you getting better? This I would assume is the point of any treatment...

[MARPUSBEAN]

We have to try this idea.
However I am not sure we really are asking if angeogenesis has happened, because as we have been discussing, today, the new vessels formed may be strong healthy vessels, and do no harm, and it was also suggested the angeogenesis may be maasked for years because of the good effect of RLT which is also positive as all we are looking for is a positive effect.
After all natures intention was that angeogenesis should happen for positive reasons, in theory it is very bad for us because we do not need all that blood, but maybe if the vessels are strong the effect is not bad but good.
We are not looking for a totally objective reply in a scientific way, but more of a subjective reply i.e. do you look and feel good and seem to have less problems!!
Since we do not have the means to measure angeogenesis quantitatively.

[GJ]

TP in RLT causes angiogenesis shock :!:

Given, then, our level of ignorance a simplified questionnaire might be the ticket:

Is RLT helping your rosacea?

Then, as Raymond Carver said, on with the next thing. Life.

[Twickle Purple]

The qualitative vs quantitative debate. (http://writing.colostate.edu/guides/research/gentrans/pop2f.cfm)

It will be nice when there is some good research on this, give us the complete picture -- such as it is with complete pictures. Alas, as it will years away yet.


Anyway, this thread is about questions. If you have some, please add post them. We want to address as many things as we can -- within the realm of personal experiences. It's the best we can do.

[Skywolf]

Peter,
I see no reason not to ask members of other boards [edited by Skywolf, bad spelling] to contribute to the thread. We are going to have to keep an eye on it for sure, but I think contribution from everyone is valid here.

Laura

Laura

I think you misunderstand me. I am not asking for members of the RSG to come on here but merely see if their RLT users would like to answer the same questions on their site. We can view each others results and the more people that participate the better as far as I am concerned.

Peter

Sorry, I did misunderstand you. Emotiotins are running a bit at peak here with this subject, I took what you said wrong.

My appologies

Laura

[Twickle Purple]

TP in RLT causes angiogenesis shock :!:

Given, then, our level of ignorance a simplified questionnaire might be the ticket:

Is RLT helping your rosacea?

Then, as Raymond Carver said, on with the next thing. Life.

GJ, sometimes you are too opaque :?:

Your simplified question is very good. My response is 'yes.' And the lovely thing is then I can get on with the next thing, life, with some confidence regained.

Today, in my garden, I realized how very nice it is to feel the sun's warmth on my face again, instead of the instant scald it was last year.

[Twickle Purple]

Emotions are running a bit at peak here with this subject, I took what you said wrong.


Hi Laura,

I think in the main things are going very well. This is a good thread. It's not about Nase or any such nonsense. It's about openly asking as many questions as we can, and addressing that as well.. I was hoping this would be useful. It is also helpful to put to bed some overly long and unnecessary conflicts -- so that we can all move forward.

Cheers,
TP

[Peter]

8. Has the rate of vessel growth in your face increased, decreased, or stayed the same since you began light therapy?

As the concern is angiogenesis here, this, it seems, is the pivotal question.

Yet we cannot, I suspect, answer this pivotal question satisfactorily without recourse to fancy vascular scanning devices and what not.

We may note the pullulation of visible (broken) blood vessels but beyond that our observations carry little weight (in this specific regard).

It might possibly be the case that the anti-inflammatory effects of LLLT are such that any occurrence of angiogenesis is masked (for years).

It might possibly be the case that LLLT gives rise to additional vessels - but if these vessels are well behaved and properly functioning they may prove entirely benign.

And on and on.

Of course, I do not believe that RLT - at the levels of power used hereabouts - causes angiogenesis.

GJ

You are absolutely right - most of us who are using RLT with good results cannot confirm exactly why this is. Being the longest user of this treatment I can confirm that it hasn't harmed me in anyway and I will continue to use it until I decide the time is right to stop.

I suggest the easiest way to resolve this is that those who are concerned about RLT causing harmful angiogenesis wait until the trial results or any other scientific evidence comes forward before making their decision. Those who want to try it now can go ahead based on the anecdotal evidence that it does not harm the rosacea skin. If anybody wants my advice then they can PM me as many have done before.

If someone wants me to fill in a questionnaire about RLT then I will be more than happy to do so in an attempt to put the record straight.

Thanks

Peter

[phlika29]

TP

Sorry if I wasn't clear in my post. I was responding to Peters post directly before mine. You were right in that I think I also brought up something Peter had said in the other thread started the other day. I apologise for this and will take no further part in this discussion.

[Peter]

I'm sorry to say that the angiogenesis is also a question that I have and I'm sure there are others as well (such as YankesRthebest who started the thread the other day).

I have to say that I don't understand why having concerns over this is such a big issue. I have concerns over many forms of treatments such as the two latest treatments prescribed to me by Dr Chu, and until I no more I am not prepared to use either of them yet.

I think that it is healthy to be wary of any treatment and this doesn't mean that we are on Nases side or that we are doubting anyones experiences. I think its a shame that when this query is raised people are belittled. When did it become wrong to want to understand more.

Sarah

Hello Sarah

Yes you did come in expressing your fears last week although correct me if I am wrong that was the first time you had mentioned it? I think Chris was just worried about flushing despite having success with RLT and I tried to advise him what to do.

This was never a big issue but has been made that way unfortunately. You will need to go back into time and read a lot of posts to understand why and who raised it and what has been said. I'm sure you have better things to do.

Nobody has said that anybody is on Nase's side now. I did post last week to say that if it wasn't for Nase's scaremongering then I doubt if we would be having this conversation. Check back and you will see what the reply to that was.

I think it is a shame when people try and defend a treatment which they know from personal experienced works and they get "belittled" - to use your word. Again look at the post I made last Wednesday and the reply it received. You try and help some people and wonder why you bother.

All the best

Peter

[Twickle Purple]

Being the longest user of this treatment I can confirm that it hasn't harmed me in anyway and I will continue to use it until I decide the time is right to stop.

...

If someone wants me to fill in a questionnaire about RLT then I will be more than happy to do so in an attempt to put the record straight.


Thanks Peter. You are, by far, the longest user and your input is invaluable.

---

So, let's all get this on track, this started going in circles a bit.

[GJ]

[GJ, sometimes you are too opaque :?:


You look for complexity where there is none.

Let us imagine that we reduce your questionnaire to just that one question. An endless throng of rosaceans, their hopes restored, pitch-up and say 'yes!'

Has your rosacea improved?

Yes!

Yes!

Yes!

Yes!

Yes!

Yes!

Yes!

Yes!

Yes!

Yes!

Yes!

Unencumbered by extraneous details, what a magnificent and overwhelming declaration of the efficacy of RLT!

I would like Steve and Chris and Sarah to begin using RLT because I think it would make them a bit better. Who knows, it may even make Steve a little less cantakerous!

One does not explain to a child the mechanism of action of his cough syrup. We simply give it to him. And he gets better.

Imperative to ask questions, of course, but desperately stupid searching for the light switch when all in the room are blind.

[Twickle Purple]

Imperative to ask questions, of course, but desperately stupid searching for the light switch when all in the room are blind.

Ah, GJ, you went and got all profound. That's a good analogy.

[Skywolf]

Emotions are running a bit at peak here with this subject, I took what you said wrong.


Hi Laura,

I think in the main things are going very well. This is a good thread. It's not about Nase or any such nonsense. It's about openly asking as many questions as we can, and addressing that as well.. I was hoping this would be useful. It is also helpful to put to bed some overly long and unnecessary conflicts -- so that we can all move forward.

Cheers,
TP

I agree TP. But people do get a bit worked up over this issue. I think this thread, and what it evolves into will be of great value, as I am with you that any questions need to be openly addressed. People are right to question any treatment, these are our faces after all!
Also glad to hear you can sit in your garden and enjoy the sun again, how wonderful! I wonder if a good question to add might be what degree of sun tolerance can you take, before and after RLT.

[GJ]

I suggest the easiest way to resolve this is that those who are concerned about RLT causing harmful angiogenesis wait until the trial results or any other scientific evidence comes forward before making their decision.


Hey Peter

Nice to hear from you.

I suspect the best way to resolve this is for the concerned rosaceans to try it. As they delay and ponder, the day rolls on 'and the night cometh when no man can work.' All the while you and David are (by all accounts) dating supermodels and TP is enjoying the warmth of the sun's rays.

This is not risk taking but the actions proper to being human.
This is not the abandonment of independent thinking or the mere falling in with the common herd but discrimination of the best sort.

[Twickle Purple]

a good question to add might be what degree of sun tolerance can you take, before and after RLT.

For sure, a change in tolerance to the elements is a must to enquire about! Good question.

[Peter]

All the while you and David are (by all accounts) dating supermodels and TP is enjoying the warmth of the sun's rays.



Hello GJ

Dam how did you find out about the supermodels? Ok the truth is out, there is a serious side effect of RLT for us males and it’s known as supermodelitis in the medical world which both myself and David suffer from. I’m afraid Steve’s angiogenesis fears will pale into insignificance when the news breaks and every male sufferer rushes out to buy a RLT unit. Simply the condition starts when attractive females see your smooth soft rosacea free skin and insist that you make love to them constantly. Initially it is very nice but as the condition progresses then the body starts to breakdown through sheer tiredness and in the later stages you are just a mere shadow of your former self. You will however depart this world with a smile on your face :wink: Alas I fear you are now in the grips of this condition given your – YES YES YES YES YES YES YES YES post. GJ I’m sorry but NO will be a word that you will never be able to utter from your lips again.


I would like Steve and Chris and Sarah to begin using RLT because I think it would make them a bit better.



Chris had been using RLT for 6 months with great success but was concerned for some reason his flushing had returned albeit nowhere near as bad as that before he started using his unit. He is going to continue as it could be something else unrelated?

As far as I knew Sarah was considering RLT for the future but didn’t want to experiment during her current treatment with lasers and that seemed sensible to me.

I’m not sure what Steve really wants to do but I made some suggestions last week which were not acknowledged. Given his sensitivity to fluorescent lighting:

http://forum.rosaceagroup.org/viewtopic.php?p=36736&highlight=#36736

"God, I hate fluorescent lighting. My complexion looks terrible in it. And it gives me a headache and makes my eyes hurt.

Some idiot just proposed making fluorescent lighting mandatory in all residences here in CA... ridiculous".

Then in his particular case it may well not be an option for him anyway.



Who knows, it may even make Steve a little less cantakerous!



Not sure it’s that effective.

Thanks

Peter

[Twickle Purple]

To recap, in no particular order, what we have so far (this will all be in an organized order for the resulting Q+A thread):

1. What are your Rosacea Symptoms (i.e., flushing, redness, papules, pustules, swelling, etc.)?

2. Which colour light do you use (i.e., red, near infra-red, red+blue combo, etc.)?

3. How many times a week do you use it?

4. How long have you used it?

5. What else (if anything) are/were you taking or using to treat your rosacea symptoms during this period?

6. Do you have see an increase, decrease or no change in the number of visible blood vessels (telangiectasia) on your face?

7. Do you see an increase, decrease or no change in the redness, flushing, swelling, papules or pustules on your face?

8. Has the rate of vessel growth in your face increased, decreased, or stayed the same since you began light therapy?

9. Have you been burnt from using RLT?

10. What type of lamp do you use - LED or fluorescent tubes?

11. How long are your sessions?

12. Does the time of day you use the lamp make and difference?

13. Did the distance from the unit make any difference?

14. Does your skin feel calmer after your session?

15. Since using RLT can you now tolerate some previous triggers better?

15a. If yes, which ones?

16. Do you cleanse your skin before use?

17. Do you usually have sensitivity with hot sun, artificial lighting, computer screens etc?

18. Do you think RLT helping heal your rosacea?

19. Has your tolerance to the sun increased, decreased or stayed the same since you began light therapy?

20. Has your tolerance to heat increased, decreased or stayed the same since you began light therapy?

21. Has your tolerance to windy or cold days increased, decreased or stayed the same since you began light therapy?

[Millie]

GREAT questions! Can't wait to check the answers........!

[Twickle Purple]

Hi Millie,

If you have any questions for RLT users, or think of something that would be good to know please add it to the list.

The call for questions will be open til May 1st so that everyone will have a chance to participate, as some members do not check in regularly. Once complete, a new thread will start which will be dedicated to answering the questions.

Cheers,
TP

[Steve95301]

Wow, Peter, wind you up and watch you go...

The time and energy you've put into this ridiculous little drama makes me think there's nothing else in your life. Honestly, I'm a little sad for you.

If your ego needs the boost so badly, go ahead and make me the bad guy. It's okay. Really. I could care less what people think, and obviously it's very important to you.

(I just imagine how much time you spent looking through my past posts, looking for something incriminating... only to discover that I'm intelligent and well-spoken. D'oh!)

Okay, I wound you up again... Go!

[Twickle Purple]

OK, let's not derail this further.

If you have a question to add to the list, please post it.

Steve and Peter, could you please reply to each other elsewhere?

Thanks much guys!

[Skywolf]

Gentelmen, please. This thread was started to give people the chance to view what others are experiencing in a particular treatment option, voice the questions they have for the start of a new thread dedicated to the subject, not as a coninued platform for constant infighting. This is getting tiresome, as we all want the best for eachother. Take it to email or PM if you want to continue to fight, but please, stop it here.

Laura

[Peter]

OK, let's not derail this further.

If you have a question to add to the list, please post it.

Steve and Peter, could you please reply to each other elsewhere?

Thanks much guys!

Hello TP

No problem I wasn't even going to bother to reply to such arrogance. Unfortunately he considers himself so intelligent that he cannot even perceive when people are actually trying to help him. The worrying thing is that when he gets his Biowhatever degree this year he will consider himself an even more superior human being than the rest of us.

As I said previously because he obviously has a problem with artificial bright lighting then RLT might not be the best option for him but then what do I know about it?. A pity if that's the case but then that's the luck of the draw I suppose with rosacea. Well a reaction to artificial lighting is in as one of the questions.

Anyway I have some other questions to be considered:

22. Have you ever stopped your RLT treatment and for how long?
23. If yes to 22. did you notice a deterioration or return of your rosacea symptoms

I think it's worth adding because Kristen mentioned once that she got worse when she stopped and I noticed this yesterday in one of Chris's (YankeesRtheBest) earlier posts in December last year.

"Anyways... yes, like i said red light has been a Godsend for me. My results were so good that I actually forgot I had rosacea and stopped using the red light every day. It was the BEST feeling in the world, but then I started to flush again after a couple weeks. So for me, I have to keep up with it. If you miss a day or two once in a while, it's not crucial. I find a half hour daily is good. I haven't used it more than that."

Anyway thanks for taking the time to do this and lets hope something positive comes out of it.

Peter

[Twickle Purple]

Peter, I see what you are saying and I think that there is still a bit of confusion about RLT in that respect. It needs to be repeated (often) then that this is a treatment and not a cure.

As an aside, I just had a visit from a neighbor. She's 69 and extremely vigorous, swimming and hiking are her life. Anyway, she's had both hips replaced in the last year and a half, and last week her husband fell down the stairs. I went over with a couple of the smaller LLLT units I have, one all 660 and one 660/880. Gord (the husband) was still in hospital but it seems that Ann just couldn't get enough of the 660/880 one!! She'd had a nerve accidently clipped with her first hip surgery and has been very committed to being active again. She's always mobile: swimming everyday, doing circuits around the (golf) course, first with a walker, then ski poles and now not even a cane. She is beginning to be able to lift her toes now. Anyway... sorry for the preamble, BUT she just dropped over with a nice big jar of homemade marmalade (my fav, yum) -- and wiggled her toes at me. LOL! She says that even in the short time she's used it on her hip and foot she can already notice a difference and she's over-the-top excited. That made my week. I could shout this from the rooftops. So far, it seems that the only thing to be lost with using LLT is incredulousness.

[Twickle Purple]

From Mark O., RSG:

24. Have you used the light on just one side of your face?

25. If 'yes' to 24, how does it compare to the untreated side (less or more calm, increased or decreased flushing, increased or decreased p and ps, increased or decreased swelling, etc.)

[Peter]

Sorry, I did misunderstand you. Emotiotins are running a bit at peak here with this subject, I took what you said wrong.

My appologies

Laura

Hello Laura

Sorry I missed your reply in-between all the other posts. No need for you to apologize.

Good to see some input starting from the RSG as they do have a lot of successful RLT users.

Thanks

Peter

[Peter]

Hello TP

Nice story. I know where you are coming from also.

Another question that you may want to consider as one for summing up at the end of the questionnaire?

26. Awarding marks between 1 – 10 how would you consider RLT in comparison with other treatments you have tried taking into account, your overall improvement (if applicable) any side effects (if applicable), ease of use and cost?

Presumably one could add up all these ratings at the end of the survey and arrive at an average view on how RLT rates as a treatment. I suppose you could also award marks for each of the 4 categories I have mentioned but then perhaps it makes it too complex?

Anyway food for thought.

Thanks

Peter

[Twickle Purple]

TP

Sorry if I wasn't clear in my post. I was responding to Peters post directly before mine. You were right in that I think I also brought up something Peter had said in the other thread started the other day. I apologise for this and will take no further part in this discussion.

Hi Phlika,

I do hope you participate in this! I was thinking it was going off base that's all.

Best regards,
TP

[Twickle Purple]

The long timeframe to ask questions should allow anyone wanting to test what happens when they stop the treatment. So that when the Answers survey part begins they'll be ready.

27. When you stopped using LLLT did your symptoms return a little, a lot or not at all? If they returned, please answer questions 27a–f below.

--27a. From the last time you used light-based therapy, how long until you saw a return in symptoms?
--27b. Was the severity of your returned symptoms less, the same or worse than before you began using light-based therapy?
--27c. Did you develop new symptooms when you stopped using light-based therapy?
--27d. What symptoms returned or developed?
--27e. What, if any, other treatments were you using at the time?
--27f. Were any new treatments begun at this time?

[Skywolf]

I think another good question to add would be to include into question #1 "what are your rosacea symtoms" What is your skin type, ie oily, dry, prone to dryness, etc. And also, what complexion do you have, light skin, dark skin, somewhere in between? It may not PC to ask that these days, but I thinks its revelant to this discussion. Something a very light skinned person may use with great sucess perhaps would not work well on someone who skin is very dark, and the other way around.

Laura

[Twickle Purple]

I think another good question to add would be to include into question #1 "what are your rosacea symtoms" What is your skin type, ie oily, dry, prone to dryness, etc. And also, what complexion do you have, light skin, dark skin, somewhere in between? It may not PC to ask that these days, but I thinks its revelant to this discussion. Something a very light skinned person may use with great sucess perhaps would not work well on someone who skin is very dark, and the other way around.

Laura

That's a very good question, as it does affect folks ability to have laser done -- so we need to find out if it affects them with low level light therapy as well.. I'll make the ethnicity question an optional one, while it would be helpful in the long run to know this, it may be out of the comfort zone to reveal. Perhaps folks can provide some input as to whether it should be included or not.

The question order right now is a work in progress. It will put into a logical order when everything is compiled. So for now, these Qs will be #28 to 30.

28. What is your skin type (i.e., oily, dry, prone to dryness, etc).
29. What complexion do you have (i.e., light skin, dark skin, somewhere in between)?
30. (optional, but would be very helpful for others of shared ethnicity to know if it is a factor in success or not) What is your ethnicity?

[Steve95301]

I think reports for specific time periods would be helpful. The results could be rolled into a timeline (http://simile.mit.edu/timeline/), allowing people to browse others' results for a given time period. For example if I've been using it for a month, I'd be more interested in the results others had after the same time period, to be able to judge whether or not my progress is typical.

(The timeline is an open-source widget that would be easy to create (http://lifehacker.com/software/memory/geek-to-live--roll-your-own-timeline-207426.php).)

[Twickle Purple]

An approach such as that would need to be predetermined from the onset and a therapy diary kept by the users. If you wish to see something like that perhaps you can structure it and call for new recruits to try RLT and fill in a diary.

[Steve95301]

An approach such as that would need to be predetermined from the onset Yep, that's why I mentioned it.

and a therapy diary kept by the users. I'm just talking about answering the questions at different times. If the survey occurs on a forum thread, then a user can just make another post, answering the same questions again. The timestamp from the post can be used to construct the timeline.

If you wish to see something like thatThe point of mentioning it is that I think people other than myself would find it useful.

perhaps you can structure it and call for new recruits to try RLT and fill in a diary.As stated above, it wouldn't require additional structure, just occasionally returning to the thread to answer the same questions.

[Twickle Purple]

If folks find something has changed they are more than welcome to add to the thread.

If you have a question you would like to add to the list, please let me know.

[Steve95301]

If you have a comment about my timeline idea, please let me know.

[Twickle Purple]

Steve, I am not looking for your assistance structuring this. Thank you.

If you have a question to add to the list that would be great.

[Twickle Purple]

To recap, in no particular order, what we have so far (this will all be in an organized order for the resulting Q+A thread):

1. What are your Rosacea Symptoms (i.e., flushing, redness, papules, pustules, swelling, etc.)?

2. Which colour light do you use (i.e., red, near infra-red, red+blue combo, etc.)?

3. How many times a week do you use it?

4. How long have you used it?

5. What else (if anything) are/were you taking or using to treat your rosacea symptoms during this period?

6. Do you have see an increase, decrease or no change in the number of visible blood vessels (telangiectasia) on your face?

7. Do you see an increase, decrease or no change in the redness, flushing, swelling, papules or pustules on your face?

8. Has the rate of vessel growth in your face increased, decreased, or stayed the same since you began light therapy?

9. Have you been burnt from using RLT?

10. What type of lamp do you use - LED or fluorescent tubes?

11. How long are your sessions?

12. Does the time of day you use the lamp make and difference?

13. Did the distance from the unit make any difference?

14. Does your skin feel calmer after your session?

15. Since using RLT can you now tolerate some previous triggers better?

15a. If yes, which ones?

16. Do you cleanse your skin before use?

17. Do you usually have sensitivity with hot sun, artificial lighting, computer screens etc?

18. Do you think RLT helping heal your rosacea?

19. Has your tolerance to the sun increased, decreased or stayed the same since you began light therapy?

20. Has your tolerance to heat increased, decreased or stayed the same since you began light therapy?

21. Has your tolerance to windy or cold days increased, decreased or stayed the same since you began light therapy?

22. Have you ever stopped your RLT treatment and for how long?

23. If yes to 22. did you notice a deterioration or return of your rosacea symptoms

24. Have you used the light on just one side of your face?

25. If 'yes' to 24, how does it compare to the untreated side (less or more calm, increased or decreased flushing, increased or decreased p and ps, increased or decreased swelling, etc.)

26. Awarding marks between 1 – 10 how would you consider RLT in comparison with other treatments you have tried taking into account, your overall improvement (if applicable) any side effects (if applicable), ease of use and cost?

27. When you stopped using LLLT did your symptoms return a little, a lot or not at all? If they returned, please answer questions 27a–f below.

--27a. From the last time you used light-based therapy, how long until you saw a return in symptoms?
--27b. Was the severity of your returned symptoms less, the same or worse than before you began using light-based therapy?
--27c. Did you develop new symptooms when you stopped using light-based therapy?
--27d. What symptoms returned or developed?
--27e. What, if any, other treatments were you using at the time?
--27f. Were any new treatments begun at this time?

28. What is your skin type (i.e., oily, dry, prone to dryness, etc).

29. What complexion do you have (i.e., light skin, dark skin, somewhere in between)?

30. (optional, but would be very helpful for others of shared ethnicity to know if it is a factor in success or not) What is your ethnicity?

[Steve95301]

Steve, I am not looking for your assistance structuring this. Thank you.

If you have a question to add to the list that would be great.

A simple "good idea, thank you" would suffice.

[Twickle Purple]

If I thought so I would have said so. :wink:

Let's wait til the questions have been gathered and we can all discuss Part 2 then. OK?

[Steve95301]

You're obviously feeling very negative today. I just wanted to put my idea out there, which I have.

[Twickle Purple]

Steve, let's not derail this OK?
Please stick to the subject at hand. If you have a question please post it.

Thank you for your concern, I am not negative today. I'm having a very good day. All my stained glass windows and lamps came and we are having fun puttering about. It's like Christmas over here. :D

Now, let's leave out the personal comments going forward.

Thanks!
Twickle Purple

[Bob Bear]

Good call TP, Id be happy to help:


1. What are your Rosacea Symptoms (i.e., flushing, redness, papules, pustules, swelling, etc.)?


Flushing and blushing mainly.


2. Which colour light do you use (i.e., red, near infra-red, red+blue combo, etc.)?

Red with a twin head lamp.


3. How many times a week do you use it?

Every day.


4. How long have you used it?

Must be about nine weeks now.


5. What else (if anything) are/were you taking or using to treat your rosacea symptoms during this period?

Nothing, other than my usual moisturizer and sunscreen.


6. Do you have see an increase, decrease or no change in the number of visible blood vessels (telangiectasia) on your face?

I dont have telangiectasia.


7. Do you see an increase, decrease or no change in the redness, flushing, swelling, papules or pustules on your face?

No, infact I would say that my flushing has been attenuated quite noticable. Flush intensity is down, as is sensitivity to triggers. I really cant fault this treatment so far. If never blood vessels are being promoted by this treatment, then they are healthy enough not to be causing any problems.


BB

[Twickle Purple]

Hi Bob Bear,

It's really wonderful that this is working for you. I remember how carefully you looked into RLT, and that you were very cautious about having any expectations. I am thrilled it is helping!

The questionaire is building right now, the plan is the do up a 'survey' sort of thing at the end so there can be a 'database' for reference.

Can you think of anything that has come up or that you wondered about that you would want other users to answer?

Thanks BB.
Twickle Purple

[MARPUSBEAN]

TP, on the symptoms, I may have missed something, but in my case and maybe other people as my rosacea "matured" I, of course, have some flushing, but my overall redness tends to be much less, and when I get a flareup my redness increase a little but is still not bad!
My main problem when I have a flareup is increased discomfort, and sensitivity.
I know this can be mentioned as one of the general symptoms, but perhaps you could consider pain/stinging as a distinct section!

[Twickle Purple]

Hi Marpusbean,

Excellent ideas. The increased discomfort and sensitivity have not been addressed here. Having sections would be a perfect way to structure the 'survey'.

Is this along the lines of what you have in mind?

31. As your rosacea progressed did you develop stinging, facial pain and increased discomfort?

32. Have you taken medication specifically for these symptoms (i.e., Lyrica, Gabapentin, etc.)

33. Since using RLT have you experienced an increase, decrease or no change in these symptoms?

[MARPUSBEAN]

Thank you TP, thats perfect

[Peter]

Hey TP

Just wind me up and watch me go with these questions :wink: As I mentioned before the list you are compiling isn't exhaustive and of course it's inevitable that there will be some overlapping but I reckon we should leave the final selection in your capable hands .

Suppose some obvious ones below but of course the age one is optional for you girls and compulsory for us guys :cry:

34. Male or Female?
35. Current age?
36. Age rosacea first noticed or diagnosed?
37. Number of years suffering from rosacea?
38. How did you hear about RLT?
39. Were you initially hesitant about trying it because of the bad press last year or did you always feel it would help you?
40. Did you feel the "good reports" on the support groups reassuring?
41. Did you find that RLT made you flush more initially?
42. If yes to 41. How bad and how long did this last? Did you manage to work through this?
43. Before starting RLT did you notice your skin had a hard "woody" type feel to it, especially in the cheek area?
44. If yes to 43. Did you find RLT made your skin much softer and has it remained so?
45. What make(s) of lamp do you use?
46. Do you wear goggles during your session?
47. Do you sit in front of your unit or lie down underneath it.

Think that will do for now.

Bye

Peter

[Twickle Purple]

WOW! This is terrific Peter.

Thank you!

[Peter]

Thanks TP.

As Marpusbean says "why do we have to make it so complicated?" I'll use his words here to say it's not a examination paper, so I would like to keep it straight forward and just ask the obvious simple questions. Hopefully if there are enough participants answering the questions, the results will be sufficient to gauge how effective a treatment RLT is for rosacea with the support group members and put others interested in a better position to make their own decision on whether to try it?

Thanks

Peter

[GJ]

Ok the truth is out, there is a serious side effect of RLT for us males and it’s known as supermodelitis


:D

My apologies to Chris for not bothering to establish his position.

[Twickle Purple]

We'll make this its own section for folks who tried RLT but didn't continue.
Please let me know if you think something should be added, or reworded.

48. Did you begin using RLT but stopped before 8 weeks?
-- how long did you use it?
-- how often did you use it?
-- what unit did you use?
-- what symptoms were you looking to treat with RLT?
-- what occurred while using RLT that made you stop?
-- what other (if any) treatments were you using concurrently?
-- did the reason you stopped using RLT go away once treatment ended?

[Peter]

Hello TP

Good idea but can it be cross referenced somehow back to question 17 on the main section. A yes to this one could be one of the reasons for them giving up before the 8 weeks.

Also did they have any other treatment carried out shortly before they tried RLT e.g. as we heard about a potential clash with veinwave recently. Perhaps adding in can they think of any other reason of why it didn't help them?

Thanks

Peter

[Twickle Purple]

That's great Peter.

I think that in the last few weeks of this thread we can start to draw up the format and question order, so we can fine tune the organization.

48. Did you begin using RLT but stopped before 8 weeks?
-- how long did you use it?
-- how often did you use it?
-- what unit did you use?
-- what symptoms were you looking to treat with RLT?
-- what occurred while using RLT that made you stop?
-- what other (if any) treatments were you using concurrently?
-- did the reason you stopped using RLT go away once treatment ended?
-- did you have any other treatment carried out within 6 weeks before starting RLT (e.g., veinwave)?