LLT and LED-induced 1st degree burns and flushing

[IowaDavid]

Thank you for your post--I understand that medical professionals have pursued that profession with an interest in helping people.

My concern was that Dr. Nase made a categorical--and I might venture to say, vindictive--post regarding LED therapy.


I'm not a doctor, nor am I a scientist. I studied English literature and taught myself how to build my own array. But, as a writer, I've been told, over and over again, that when someone makes statments using the words, "all", "always", "any", "never", etc... that one should regard said statements with extreme skepticism.

I am only here to express qualified statements regarding my anecdotal experiences with LLLT. When someone posts a categorical, contrarian, and patently false sentiment, please do not hold it against me for responding.

I only want to help fellow rosaceans that may be uninsured, spending hundreds--if not thousands--of dollars a year for medical care.

It's incredibly frustrating when you're 21 years old and you get your vitality and ability to be a functioning adult ripped away from you. And then you keep trying to help yourself with available treatments and a parade of dermatologists, doctors, and laser physicians.

And, say, 3 years into this process, when you're admitted to the Emergency Room with a core temperature of 84.6 degrees F, as you've been trying to stay cool in the air-conditioning and avoid a heat-response flush during several weeks of a US midwestern summer, and then you spend 7 days in the internal medicine ward of a US private hospital,w with your doctors saying you really shouldn't be alive--all the while, again, still uninsured--and end up costing yourself 10,000 USD, and after this, you still get no help from laser doctors and fall back AGAIN into that same state trying to deal with this disease....

I could go on with this story. PM me if you're interested.

What I will not do is allow falsehoods to go as unchallenged facts because a poster here has a "Dr." in front of their name. I'm not accusing you of anything; you've been quite helpful in defining your experience with patients and I share your honest interest in finding where red light therapy stops being helpful and begins to harm rosaceans.

When I have found something that anyone can do, for a few hundred dollars, and it will last them several years--I'm not going to shut up about that. And I won't be shut up by anyone. That's all.

Again, thank you for your posts. I very much appreciate your clarifications.

Best Regards,

David

[redhotoz]

I find it interesting that Geoffrey considers the use of LLLT lamps to be harmful to Type 1 Rosacea in any way, shape or form, regardless of whether it is a home made or commercially bought machine, whereas Dr Crouch has “no problem with properly constructed/ tested / calibrated devices with FDA approval.”

Since I am currently considering making or buying a red lamp, it would seem that an FDA approved lamp would be my safest choice. I have read that quite a few people now use commercially-made (and certified safe) red light and LED lamps, yet across the entire rosacea on-line community, I have only ever heard of Iowa David using a home made LED array. Since David has shown improvement in his Rosacea with his set up, it would be David that I would direct the questions to, if I decided to make one at home.

I started to think what I would do if my face had a negative reaction to the lamp. Surely most people who suffer skin burns would go straight to their GP, or to the emergency department at their local hospital. The next most likely choice would be their dermatologist. I couldn’t even imagine thinking of going to see a laser specialist with burns to my face, besides the waiting period to get an appointment with a highly reputable laser specialist.

If two people using “home constructed super bright Infra red LED arrays” chanced to turn up at the same laser clinic in the same week to report such damage, then surely there must be many, many hundreds every month throughout the UK, reporting burns to other doctors.

If that was the case, surely it would be widely reported in the newspapers, on TV and on the Internet, there would be safety warnings in the electrical stores, etc. Most importantly, there would be medical reports about the damage sustained. None of this seems to have occurred. Or was it just pure coincidence that two people with home made units burnt their faces a few days apart, in the same area?

If it is happening so widely in the UK, there must be vast numbers of cases in the safety-obsessed USA. Why hasn't the FDA issued a safety alert? I am mystified!

Dr Crouch, when the patients you saw "were lucky to escape permanent damage", did you report the incidents to the regulatory authorities in the interests of public safety? If so, could you please let me know which body it was reported to? Other Rosaceans could refer their own doctors to it, to check on how many other reports had been received, and find out what safety advice they planned to issue. Surely Rosaceans are entitled to that protection?

Geoffrey, if “In many cases, things that promote dramatic increases in blood flow remove the inflammation” and being that you have stated that Type I Rosacea has a component of inflammation, wouldn’t it appear that red light therapy would benefit Rosacea? I am confused about this now. If, as you state, Type I Rosacea does infact have a component of inflammation (and I believe it does) and red light therapy is touted to have an anti-inflammatory effect, I am not sure why you believe it won’t help with reducing the inflammation? I am not sure why you appear to be so forthright in objecting to this therapy when others have had a good result.

Aren’t we all here to find what works for us individually as Rosaceans, particularly since we all react so differently.

Oh for a cure!!!

Red

[Bradley]

David it would be great if you could post some before/after pics of your skin to see how the red-light treatment has benefited you.

Dr. Crouch, I'm slightly confused as to why anyone, who has experienced a facial burn as a result of their own constructed light unit, would visit you (a laser specialist) to report their problem? Surely they would visit their own general practitioner and then be referred to a dermatologist or surgeon? Forgive me if you have previously mentioned you are in fact a GP yourself.

[peter.crouch]

Here we go,

Redhotoz,
I said in my last post that I would not recommend red light therapy for rosacea ( please read the post carefully). My comments about FDA approval were meant to be taken in context of medical devices.

Actually, I am acutely aware of my responsibilities to report medical devices that could cause harm. I looked into whether I could report the LEDs to the Medical Devices Agency and guess what they said? As these home constructed devices are not CE marked Medical Devices, (they are one-off self-constructed energy sources using components not sold for that purpose as any commercially available system) ~ I therefore can't report them. I also ased Maplin if they could put something into their catalogue about the LED arrays and they said they would look into it but as they said, the LEDs are sold as electrical components, not as medical devices.

As for why I would have 2 patients in a week - (I've met this scepticism before), I've no idea - perhaps because I seem to be seeing a lot of rosacea patients who read the acne rosacea boards lately - I hardly ever know the rosacea community user name of the patients who consult ( usually their names on here are different for obvious reasons). If I get a request for advice about a patient damaged by exposure to energy from a treatment, our call bureau are trained to route the call through to me a.s.a.p. and I will see them a.s.a.p. or advice them to seek appropriate care locally. I was mightily relieved when I spoke to them immediately they had called the call handling bureau that they were not patients I had personally treated. Both patients said that they had gotten the idea "from the internet".

I trust that others share my views regarding the tone and content of your post. Is it any wonder that laser physicians dont want to post in this environment. I'm quite happy to gift my time to post about topics I know something about. Why is it that these community bulletin boards can't stay focussed on just working constructively together to further expand treatment options for those afflicted with rosacea?

Kind regards,

Peter

[peter.crouch]

David it would be great if you could post some before/after pics of your skin to see how the red-light treatment has benefited you.

Dr. Crouch, I'm slightly confused as to why anyone, who has experienced a facial burn as a result of their own constructed light unit, would visit you (a laser specialist) to report their problem? Surely they would visit their own general practitioner and then be referred to a dermatologist or surgeon? Forgive me if you have previously mentioned you are in fact a GP yourself.

Dear Bradley,
No worries, I am also a General (Family) Practitioner and a Forensic Medical Examiner. As I consult locally as a laser physician, if people attend our local A&E Dept or GP out of hours service or see our local dermatologists with a laser/IPL problem then it is likely that they will be referred to me for an opinion as a local laser specialist. I receive many referrals a month from our local dermatologists and GP Dermatology specialists.

Kind regards,

Peter

[drnase]

David,

In Bio-Medical science where we do benchwork and clinical work on patients, we often state the benefits and side effects. We add numbers and statistics to the information to give it validity. As you can see one physician did back up exactly what I said and he did that for the good of other rosacea sufferers despite the current atmosphere.

If anyone where to read both posts, you would just find facts, numbers and warnings. Absolutely no vindictiveness. This is the same way that we would write a manuscript or letter to the editor. There is never ill will between scientists or physicians who scrutinize each others work -- this process is one that makes each of us better.

As to categorically stating that these machines are not for rosacea right now. I stand behind that 100%. The simple fact cannot be contorted or misplaced -- photobiomodulation significantly increases blood flow to millions of cellls that it is trying to heal. You cannot get away from this fact. This increase in blood flow can last for hours. If your veins and lymphatic vessels are not working properly, the blood cannot be removed and hence progression of rosacea.

These are all sound facts with no agenda. I am the first guy to go out on a limb for any possible new treatments. You have personally seen this for 8 years. That is also not in dispute.

I stated that people were getting hurt and they should be very careful. If I sat back and did not be a rosacea advocate and NOT report the many adverse reports from rosacea sufferers -- then you should say shame on me. For me to sit on my hands and let more people get burned because I want this forum to run flawlessly with no disputes would be dishonorable to say the least. A physican has reported two such cases and many others have also, but I will wait for them to post if they want to get involved, as most wont.

Thank you Dr. Crouch. Peter, you have seen the atmosphere lately in which no physician would dare post -- but you did on two cases and a serioius warning. To post information like this when it will certainly be under high scrutiny shows your character.

I hope that the pro- people re-read the information and take it for what it is. Just factual information.

[prryjones]

Regards,
If you guys (who tout the efficacy of these light tx devices) want to convince others of their validity, then I'd suggest before and after pics.
I would also advise you to convince other, local (to you, that is) rosacea sufferers to do this. Also before and after pics. A sizable patient population showing good results would really and credibility to your claims.
Also wouldn't be a bad idea to dig up some studies on this type of thearapy and its effects on rosacea (any done?).
If you sincerely want to spread the word, then get in touch with a local Derm and plead your case. If he won't listen (prob. not), then maybe he can put you in touch with someone who will.

There was a gentleman once (maybe he is still around) who touted the "cure" for rosacea as being the industrial solvent DMSO combined with the anti-fungal drug fluconazole. Of course, he was a layman and no studies, valid or otherwise had been done. (Sort of like this case, no?)
Anyway, he expected to just proclaim this "cure", and that everyone would just "trust" him...although he had not pics, evidence, or even professional credentials to give him some credibility. Just like this.

You can't expect, considering this situation, any more positive response than that.

[DukeCity]

DUARFASIESAN - Your name spelled backwards is not very nice, you just joined this afternoon and you have no agenda here??

[Steve95301]

I think you have to be a complete idiot to get a 1st degree burn from LEDs. Its like getting a paper cut from a balloon.

Exactly, I think that's the whole point. The people advocating these devices seem to know quite a bit about electronics. The average rosacean, I think, does not.

Therefore if the normal, electronically-ignorant rosacean were to attempt to build such a machine, I can imagine the results being disastrous.

Oh, wait: that's exactly what a Medical Doctor has testified to having witnessed in his own practice.

How can advocating caution be considered a bad thing?? Especially when the possible harm is supported by sound theory and actual case reports?

I realize some of the pro-red-light folks consider Dr. Nase to be a histrionic/hypochondriac, and the "ego" factor is quite evident in most of the back-and-forth posts, each defending his own.

But quite apart from anyone's ego, I think that the more information that is available the better, and I am glad that two medical professionals have followed their own moral compass in sharing that information, despite the potential flaming.

[keisha06]

I like to see both sides to ALL treatments - good reports and bad. I'm glad for those that have had good results with the red light treatments, and equally glad to see the reviews to the opposite. This lets me make decisions, one way or another, with a balance of information - which way I choose to go is up to me.

I have had very good results with treatments with Dr Darm and will likely do more this spring - but I am none-the-less, appreciative of posts to the contrary - this helps achieve some realistic balance. The same go for those that have good and bad results with Dr Soldo, and those that have good and bad results with new products like the Neocutis cream.

What I would like to see is less "personal attacks" in these posts. If you disagree with something - then post the facts and leave the personality part of it out - I know it hard, but it is worth trying to achieve. Is it so much to ask that someone simply say "I disagree with this and this is why" and state the facts? Share your personal experiences and any facts and leave it at that - let us all support one another by giving information so we can all make the decisions best for us.

I have to say that lately I don't envy the moderators - tough job guys but it is appreciated (even if doesn't seem so at times).

I have greatly appreciated the information all members who have shared of their experiences, and I will also say once again - I appreciate all the information Dr Nase has shared about current and upcoming treatments - it gives me hope (and information I wouldn't get elsewhere) and from that point, I can investigate and make decisions as to what to try if and when it is available (I do realistically realize that perhaps all future treatments may not come to pass). One great personal example for me is Lyrica - I do get nerual burning, although it is less now than it used to be due to the treatments I have had from Dr Darm, but it is still there, but this is something I would not know about (and my GP sure wouldn't know ) - this gave me an option to follow up - if I choose to do so. I did some searching on it - and decided yes it was something for me. And while I have only been on it a little over a week - so far I do see some small improvements. I've also utilized some of the great information on supplements that all in this group (and others) have posted. I've chosen what I felt was most important/best for me - but many I would never have known about if I hadn't read them on one of these support groups.

I have no problem with anyone disagreeing with anything anyone posts (including those posts by Dr Nase) - but not when it is directed against the individual rather than the treatment/facts. Posting oposition to something simply because of "who" posted it rather than the content of the post itself only creates these uproars that cause various members to leave. Controversy is OK, that's life as no two people (let alone a group) will always agree - but it should be on the treatment/product - not the individual. We know there are factions but the rhetoric is getting old on both sides - let it go.

Maybe one thing to keep in mind before posting content directed more against an individual that what they have said is that we need to depend on each other - and one of those that gets "driven away" by one of these uproars may be the one who has the information to share that YOU need.

Sorry to rant a bit here :-({|= , but I've been saddened to see what has been going on lately and I've been reminded very often of something I heard former US President Jimmy Carter say in an interview (and I am Canadian, not American) - "debates were much more polite and productive when we began with my honorable opponent" . . . I can very much see his point (it was said whether the opponents felt it or not).

For those that like such things . . . here is a quote I've always like . . ."if wisedoms way you wisely seek, five things observe with care, of whom you speak, to whom you speak, and why and when and where"

Here's to a good year for all Rosacea suffers!