My Red/Near Infrared Light Therapy Experiment

[Aspen]

Hey folks, here’s a little diary of my experience with IR/NIR light therapy. I’ve been using it for 2 weeks... been wanting to post about it sooner but I’m starting from a severely ill place and haven’t had the energy til now... I’ll post a little at a time over the next week or so to catch up on the stages I’ve gone through so far.

Why this light?
I bought an Orion 1000: https://www.orionrlt.ca/products/orion-1000 I’ve been reading other people’s IR/NIR posts here for months and had a feeling it would help me a little, but initially I thought the price was out of reach and I don’t have access to anyone who can build one for me. But then I qualified for CPP Disability and got some backpay, went back to the Orion website and their full-body machine happened to be 40% off. I bought it the next day, happy serendipity. I chose Orion because they have a good track record with Olympic athletes so I figured the quality was good, and they have free Canadian shipping. I had also been reading up about all the $100s I could spend on trying supplements that may or may not increase my energy, and I figured well, at least an IR/NIR is a one-time purchase that could benefit me for years, plus if it doesn’t help me much my family could use it anyway.

Illness history:
I’ve been ill since October 2019, sliding between a 0.5 and 2.5 on the severity scale. Before using the light I had been a level 1 since about October. Unable to sit up or do anything except walk to the bathroom, often needing help with that. Struggling to tolerate food and spending most of the day totally incapacitated, usually with 1-3 hours of feeling a little less ill in the late morning/mid-day.

I received the light in the mail on Feb. 5, 2021 and started using it the next day. I’ll leave you in suspense for the rest til I have another little burst of energy.

 

[Chris]

Thanks for the note, and for introducing me to a hitherto unknown to me brand. Actually it looks very like my Platinum bio 300 unit that I have been using for about two years, though that has separate switches for the Red and Near Infra Red sections, and is available in three versions--all Red, all NIR, or 50/50; I got the 50/50, and now rather wish I had got the all NIR for more effective action deeper.

I was introduced to this stuff by Chapter 4 of Doidge's fascinating "The Brain's Way of Healing" back in 2015. I have now used a variety of devices, and though I am convinced that they can do great good at the overall health level and at the local level, I have not yet assured myself that thy can really be powerfully effective at the brain level, though we now know that we have both inflammation and lowered blood circulation up there--but is that causal, or just one element in the whole body metabolic depression pointed at by Naviaux and seconded by that new paper from Cara Tomas and the Julia Newton team that shows that it seems a cellular problem is at the root of CFS.

I have the Vielight Neuro Alpha, a sophisticated and expensive unit aimed at the brain, but have frankly been disappointed--not much change, though no problems. I now have on order an even more sophisticated and powerful --and more expensive-- helmet from "Quiet Mind", to see if that can do a better job--I hope it will, but since I have not received it yet obviously can make no report.

And in the meantime smaller units are being very useful for the odd sore knee or wrist etc. and probably general state of wellbeing. And If you don't know Ari Whitten's "Ultimate Guide to Red Light Therapy" it is worth reading--generally intelligent and very well informed and referenced, with a good section on dosing--apart from the obviously silly title.

 

[Aspen]

Informative, thanks @Chris ! The Orion light has separate switches for IR and NIR too, I just use them both together though.

I was introduced to this stuff by Chapter 4 of Doidge's fascinating "The Brain's Way of Healing" back in 2015.

I heard of Doidge’s work a few months ago, I can’t wait til I get well enough to read again so I can check it out. I’ll put Whitten’s book on my book list too, sounds great.

I’d love to keep hearing updates about your light experiments.

 

[Aspen]

Here’s what I use to track my vitals and symptoms, not sure how much detail I’ll add here but at least you have a bit of reference for how I’m measuring physical changes during this experiment:

I use the Bearable app to track symptoms, meds/supplements, and daily factors that impact energy/wellness.
I use a Garmin watch to track heart rate, heart rate variability (Garmin uses a scale of rest vs. stress to report on HRV), sleep and pulse oximeter.

 

[Aspen]

I use the light in bed since I can’t really stand up, I prop it sideways in bed 6-12 inches away from me and bake myself front and back. I started out the first 2 days with a short dose of 3 mins total - 1:30 on each side. I meant to start out with only 2 mins, but I messed up the timer the first time and I didn’t blow up , so I just went with it.

My biggest worry before I started was that infrared light can activate the sympathetic system. When I started the light, I had been in PEM for 4 weeks and hadn’t been able to turn on my parasympathetic for more than a few minutes at a time, even during sleep. I was averaging only around 2 hrs/day in a resting state with very high muscle tension.

But as soon as I finished the first treatment I felt instant relaxation!!
Day 1: 5:54 hours in rest. Mind BLOWN.
Day 2: 8:40 of rest!!!!

In case you can’t tell, I’m basically shouting that out in total excitement, heehee. My symptom score dropped 5 points in those 2 days. My resting HR, which had been 10 bpm higher than normal during the PEM episode, dropped by 2 bpm.

Physical sensations: My muscle aches drastically reduced on both days. I feel heat in my spine and up into my brain stem. I also feel a rushing sense in my body, feels like increased blood flow and also lymph flow, since my sinuses cleared right away and I got a sort of draining feeling down through my head. I did the Perrin self-massage on my head and neck to help with that - I don’t always have the energy to do it so it felt extra luxurious to be able to make it through.

I’ve had a couple of factors that have set me back a bit since then so the progress hasn’t continued to be quite that dramatic. But with all that good stuff happening I went up to 2 doses/day on day 3. I’ll tell you all about that next time. See you folks later.

 

[YippeeKi YOW !!]

IR/NIR light therapy

Don't you mean Red/NIR light therapy?

Confused .... not an unusual condition ....

 

[YippeeKi YOW !!]

And If you don't know Ari Whitten's "Ultimate Guide to Red Light Therapy" it is worth reading--

My only quibble about Whitten's book, if I'm remembering right, is that he has a clear preference, for whatever reason, for a particular brand of Red/NIR units which I found ..... irritating .....

 

[YippeeKi YOW !!]

I have the Vielight Neuro Alpha, a sophisticated and expensive unit aimed at the brain, but have frankly been disappointed--not much change, though no problems.

Like you, I spent a fair amount of time focusing on this unit, what with brain fog and cog difficulties when I'm highly symptomatic, but finally arrived at the conclusion that, for the price, it really wasnt worth the gamble and seemed more like a sales gimmick than anything reliably probative ....

 

[YippeeKi YOW !!]

For those of us interested in Red/NIR light therapy and its potential benefits for some ME effects/symptoms, , here's another thread with another intrepid experimenter, like @Aspen, taking the risks and providing information to all of us ..... much appreciated, by the bye ....

Red and near-infrared light therapy, LEDs
https://forums.phoenixrising.me/threads/red-and-near-infrared-light-therapy-leds.79181/

 

[Chris]

Aspen, great to hear that you are doing so well--and glad to hear that the Orion also has separate switches for Red and NIR--not mentioned on their site--at least I did not see it. Actually I have been thinking of adding to my rather small Platinum 300, and .... well, it's Canadian!!

I agree with Yippeek! on the Vielight--but, ever hopeful, have ordered a much more powerful and sophisticated helmet from the Quiet Mind people, and will report on it later. Maybe....

 

[junkcrap50]

I’m considering buying a red light therapy device from Alibaba for like 1/4 of the price. They look exactly like the very expensive ones for sale in the US, which are likely made in China anyway. Heck the companies probably buy their machines wholesale on Alibaba. The devices themselves and very simple and could be made homemade if you buy the right wavelength LEDs. A guy on YouTube has made one.

 

[Chris]

@Aspen, you are of course right--the Orions do come with separate switches--guess I just missed out. But they do not appear to give one the choice of 50/50, or 100% one way or the other. The really odd thing is that they look identical, and are all three identical in size, to the three analogous devices in the Platinum range--this cannot be accidental--wonder what the relationship is? The Orions are however more powerful . And Platinum have moved on to a more expensive range involving 4, not 2, wavelengths--though they offer no visible science behind it.
@YippeeKi--Ari does obviously like the Platinum and Red Rush units, but for good reasons; he is polite about the Joov units, though they do look inferior on paper. And Orion seems a very recent arrival.

 

[gbells]

https://redlightman.com/blog/red-light-therapy-vs-sunlight/

 

[YippeeKi YOW !!]

Ari does obviously like the Platinum and Red Rush units, but for good reasons;

My point exactly, tho I think our respective range of 'reasons' might differ ....

 

[Aspen]

Don't you mean Red/NIR light therapy?

Haha, yes, yes I do. Now look who’s confused!

 

[Aspen]

@Aspen, you are of course right--the Orions do come with separate switches--guess I just missed out. But they do not appear to give one the choice of 50/50, or 100% one way or the other. The really odd thing is that they look identical, and are all three identical in size, to the three analogous devices in the Platinum range--this cannot be accidental--wonder what the relationship is? The Orions are however more powerful . And Platinum have moved on to a more expensive range involving 4, not 2, wavelengths--though they offer no visible science behind it.
@YippeeKi--Ari does obviously like the Platinum and Red Rush units, but for good reasons; he is polite about the Joov units, though they do look inferior on paper. And Orion seems a very recent arrival.

I’m saving this 50/50 vs. 100% comment for later brain space, haha! Soaking up all the tech talk very slowly.

 

[Aspen]

On Days 3,4, 6 &7 I added a second dose 6 hours later of 2 mins total, for a daily total of 5 mins. I skipped the second dose on day 5 cuz I didn’t want to overdo things, but I kept seeing pretty amazing incremental improvements so I kept going with it. I describe my daily total upright time below, but do note that it’s in addition to the 10-15 mins I spend going to the bathroom every day. Also I use compression stocking for POTS if I decide to try being out of bed for more than just a bathroom break.

Results:
Day 3 - Noticably increased energy. 7 hrs in a resting state. Had enough energy to wash my face AND brush my teeth all in the same day, which I haven’t been able to in months. Feeling fly.
Day 4 - About the same energy as day 3 but symptom score was significantly lower. 5:37 of rest. I run an airbnb out of a guest suite on my yard; I usually get family to finish prepping for guests after the cleaner is done but I felt well enough to do a tiny bit of prep. I was up intermittently for a total of 30 mins over a 90 min stretch. I did notice increased muscle soreness in the evening so my symptom score was up a bit and I was a bit worried.
Day 5 - Only one 3 min treatment in the am. Slightly less energy than day 4, but I got a whopping 10:14 hrs of rest. I also was up again for another intermittent 20 mins. Symptom score was down 10 points!
Day 6 - 10:7 hrs of rest, same energy as day before. Started my period... I usually have a couple of very bad days at the start of my cycle, but I didn’t notice a dip in energy or symptom score.
Day 7 - Best energy yet. 7:39 hrs of rest. Up for a total of 30 mins over a 2 hr stretch.

Stay tuned for the first half of week 2 next!

 

[Aspen]

https://redlightman.com/blog/red-light-therapy-vs-sunlight/

Good summary there!

 

[Chris]

@Aspen--great to hear that is continuing to help--you have my sympathy for the restrictions on your life of this damned disease. I have been using low dose Mestinon for about two weeks now, and it is definitely helping a bit... I am sure that my discovery that Orion and Platinum have such shared dimensions supports JunkCrap50's assumption that these things are mostly, or at least largely, made in China (each company probably makes its own LED face plate with chosen LEDs.) Will explore AlI Baba with help from my son-in-law who has bought through them.

 

[YippeeKi YOW !!]

@Chris

You're a brave warrior .... Alibaba scares me. So does everything else right now ....

Let us all know how that goes, yes? And sending a collection of lucky vibes atcha' .....