My Red/Near Infrared Light Therapy Experiment

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To add a few things about week 1:
I forgot to say that on days 6-7 I upped my second dose of the day by 0:30 secs/side, so my total daily dose was 6 mins.

Also to put it in a broader context - I spent more time upright without crashing in my first week of red/NIR treatment than I had spent in total since October! Week two gets messier... because that’s just life sometimes.
 
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My dosing for the next 10 days was all over the map. I upped the dose slightly on Day 8 as planned, but had a bunch of setbacks and honestly I couldn’t keep my dosing decisions straight in the PEM that followed. Feels weird to look back at it and see how inconsistent my thinking has been, but oh well.

Day 8: A total of 7 mins in 2 doses. 7:39 hrs of rest. Resting HR 3 b/p/m above normal. No extra upright time. And my childhood best friend died. Oof. The waves of emotion have been pretty unpredictable since then and I don’t have my feet under me yet. It sucks going through grief without being able to physically move; walking things out used to be my most reliable therapy. But I was expecting worse vital signs so I do think the light therapy has been helping.

Day 9: Busy day in the house so I only had time for one 4 min dose. Resting HR up to 5 bpm over normal. 12:37 of rest!!! Up 10 mins. Higher symptom score due to emotional stress.

Day 10: Another single 4 min dose. I actually had pretty good energy this day, up an extra 30 mins and 9:17 of rest. Resting HR at normal! I was very surprised by this.

Day 11: I liked the 4 min dose a lot so I did two of them on this day for a total of 8 mins. 9:26 of rest, resting HR at normal. I had really good energy again this day... and I got myself in trouble with it. I told my family that I had the energy to fold the laundry in our airbnb myself after everyone was out for the day. It would have been ok except that when I got to the dryer I realized the red throw blanket had been put in with all the whites... red lint EVERYWHERE! :headslap: Too late to call for help so I had to do an extra 20 mins of lint rolling (for a total of 45 mins upright) before the guests checked in, which put me into PEM. Sometimes I’m my own worst enemy.

Day 12: 8 mins total over 2 doses. Resting HR still at normal but only able to get into a restful state for 6:36. Feeling the PEM onset, higher symptom score. Up for 10 mins.

Day 13: 8 mins daily total. Resting HR 1 bpm over normal. High symptom score due to PEM symptoms, low energy. 5:7 of rest, lots more tension.

Day 14: 8 mins total dose. HR 3 bpm above normal. 4:28 rest. This is 3 days past the PEM trigger, which is usually when things bottom out for me. High symptom score, in bed all day except for bathroom breaks. But my HR is still much better than previous crashes.

Until the last couple of days I thought that my downturn was only due to the bereavement and the lint bomb. Of course I’m sure those triggers caused the crash I’ve been living in the last 10 days, but I’ve since purchased Ari Whitten’s The Ultimate Guide to Red Light Therapy e-book.
https://www.amazon.ca/gp/product/B07FJNZ821/ref=ppx_yo_dt_b_d_asin_title_o00?ie=UTF8&psc=1
I read the dosing chapter a couple of days ago and now I think also that 8 mins/day is too much for me. I‘ve been dialing things back and we’ll see what happens.

I think I’ll share maybe one or two more posts with this level of detail, but hopefully now I’ve settled on a good dose that I’ll stick with for a while. Hopefully it’ll create a more stable physical response and I can just report on general highs and lows each week.
 
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Oops, another general thing I forgot to add!! On days I do a 2nd dose, I don’t feel any relaxation response like I get during the morning one. I think it’s because I’m at my most tense for a few hours after lunch and there’s not much that helps me during that stretch. But I do notice that I get pretty achy in the late afternoon and evening without that little afternoon boost, especially in my leg muscles, so it still feels pretty luxurious to do the second dose.
 
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Week 3.... I was all over the map on dosing for the first few days because my grief/brain fog kept messing with my ability to remember what I decided for dosing. I meant to go back to 6 mins/day, but I would set my timer for a bit too long and only realize it after I logged my 2nd daily dose and saw my daily totals. My symptom score was up again those days - feeling incapacitated by fatigue and not able to move much, more muscle pain, not tolerating food as well. Hard to know how much of that was due to too much R/NIR light and what was related to emotional stress, but Whitten says overdosing will lead to fatigue so I’m guessing that was part of it. Day 17 was awful - had to go get a lab test done and did not have the energy for it. Major hypoxemia attack, loss of circulation/feeling/function in the limbs and air hunger.

Day 18 I skipped my doses to get back to a sort of baseline and wrote down my dosing goals in detail to keep me grounded. Been doing 3min/3min ever since, skipping a day on the weekends because that’s what the literature suggests is best. Avoiding all extra physical activity.

From Day 19-23 my vitals kept stabilizing incrementally again - every day with a lower resting HR, more constructive rest and less physical tension. Pretty amazing considering how bad day 17 was. It usually takes me weeks to see any improvement after days like that. By day 23 I was only 2 bpm away from my resting HR. I actually went days 22-23 without pain or muscle tension! I haven’t even been close to that since I got sick. Delicious rest those days.

Today is Day 25. Last night I got a mast cell activation response to my night snack (got a new brand of tuna... bad idea). The night was rough, and I feel like I got hit by a truck today. My HR and symptom score are way up again. I just haven’t been able to avoid those stupid triggers yet. The interesting thing is that since I felt so good the 2 days prior, I feel like I can better identify the symptoms that are related to the food intolerance. I’ve had a lot of MCAS symptoms so far (undiagnosed, but the symptoms seem to fit the bill) and I still have quite a learning curve ahead of me to figure all that out.

I am a little disappointed that I’m still in PEM 2+ weeks after my triggers; I was really hoping the light therapy would have shortened it more. But I’ve only ever had one PEM that has been this short; every other one has been 4 weeks or more, and more intense too. And I’ve had several triggers the last couple of weeks, so in reality I’m not doing too badly. I’ve been reminding myself this week that the fact I can actually notice the effects of the triggers is progress - it’s all useful info that I couldn’t really figure out before because I felt so bad all the time.
 
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Today is Day 35. Been consistently dosing at 3min/3min every day except for one rest day every week. I’m still in PEM because I can’t seem to avoid triggers (it doesn’t take much :xeyes:). But the differences between PEM last month before the light therapy and this month with it are pretty amazing. Before I brag about that ;), I’ve done 2 things over the last couple of weeks that have also helped.
  1. I switched from powdered electrolytes to Hydralite effervescent tablets. My muscles loooove the effervescent formula.
  2. I started experimenting with Ubiquinol on Day 27, as per this post. The first time I tried the full recommended dose, but it was way too much for me - put me in a wired state and I barely slept that night. But a few days later I halved the dose down to 400mg and it seems perfect for me, smooths the rough edges of PEM over and drops my resting HR by a few bpm. I do sleep maybe an hour less than usual that night, but I’ve been sleeping so well with the light therapy that it’s not a big deal. I don’t plan to use Ubiquinol daily for budget reasons, although it is tempting since I react to it so well, but at least it can help get me through PEM.
After my food reaction from last post, my resting HR went up 9 bpm the next day, and then steadily decreased over the next 3 days to almost baseline. I used Ubiquinol twice during that week. I kept hovering right above baseline for the next 3 days... feeling good but the week was busy in my house and I didn’t quite get enough quiet time to get all the way down.

This Wednesday (day 33) I had to go in to the clinic again. I asked for a wheelchair and they couldn’t find one, so I had to walk down this long-ass hallway to the station. By the time I got there I was in pre-syncope... big crash. Again. Sigh. :bang-head: I’m looking for my own portable wheelchair so I never have to be in that situation again. Yesterday was rough with a higher symptom score, fever and pain in the evening. By this morning my overnight resting HR was 11 bpm above baseline. Took Ubiquinol when I woke up to take the edge off.
 
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Since starting red/NIR therapy, my symptom score has dropped to half, even during PEM and before using Ubiquinol. Here’s a few highlights.
  • Muscle pain: Pre-light therapy, my muscle pain rated medium-high most days. After light therapy, it rated 2 days at none, 8 days at low plus 10 days at medium. I did have a painful week after my friend passed away, and also for a day or two after each of the other recent PEM triggers. A big difference here though is that those post-light therapy ratings never lasted all day like pre-light therapy - they would flare up a bit but subside noticeably in a couple of hours.
  • Fever: Before light therapy, I had fever on average 4 days/week. Since using the light, I’ve only had 4 days TOTAL of fever!
  • Sore throat: pre-light therapy I had a moderate sore throat 2/3 of the time. Since starting therapy, I’ve only had 2 days of moderate sore throat and 4 days of mild.
  • Weakness: I chart this when I feel extra weakness beyond my general energy levels, such as having trouble lifting my water bottle, holding my phone when someone calls me, or trouble speaking. I had 2/3 fewer days with weakness compared to pre-light therapy, and again the symptoms were more transient rather than lasting all day.
My sleep has drastically improved. Pre-light therapy, I averaged 6-7 hours of sleep with <1 hour of deep sleep every night (usually 20-30 mins) and waking 3-4 times/night. Every couple of weeks I would sleep 10-12 hours a day. Since using the light, I average around 9 hours of sleep a night with 1.5-2 hours of deep sleep. I slept 11-12 hours a night for a couple of nights early on in the light therapy experiment, but I haven’t had one of those nights in a while... I just don’t need them anymore. I still wake 1-2 times a night, but most of the time it’s because my dog is looking for someone to let her out and I fall asleep again within a few minutes. :dog: My circadian rhythm is more regulated too - I’m generally asleep by 10:30/11 and awake around 7:30.

As far as my energy levels, it doesn’t feel like I have more energy yet - I’m still not bathing or brushing my hair, and I’m mostly just in bed other than bathroom breaks. But I have been able to shuffle over to check on my airbnb once a week or so without crashing, and I brush my teeth at least once a day (except for the day after a crash) which was not possible pre-light therapy. I also washed my face 5 days this last week! Ok, so I do have more energy. :cool: And I can’t forget that I have the energy to post all this text on here (even though it does take me a few days to put each post together).
 
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Oh yeah - and I’ve had the brain energy to start guided meditation again! I used to meditate quite a bit pre-illness but now when I get down to a severity of a 1, meditation makes me feel sicker. Not enough energy in the brain to concentrate. I do focus on the breath to get me through the bad days, but it’s not restful. I’ve been able to do guided meditations or visualizations for about 3 weeks now, big progress. I’m sure it’s helping my pain levels too.
 

Chris

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@Aspen--great to hear that overall you are still doing well--"best energy yet!" I do have some news--and maybe should preface it by a kind of apology---I only came down with ME in 2007, when I was already 74--had had a full working life, and have a decent pension--no way "rich,", but no financial worries. And now at 88 still feel not bad, and so am spending some money on my health--may last a bit yet.

So I still think the low dose of Mestinon I have been taking is doing some modest good. The helmet thing is definitely clearing my head--wish it had windows for LEDs to shine through onto my forehead and nape, but otherwise I like it--now up to 12 mins at level 2--will soon move up to try level 3. I also have two of the capsules used by Margaret Naeser (see Doidge, Chap 4); and on alternate days I hold these to my forehead and nape.

My head feels clearer, and overall I feel slowly better (still using that Platinum Bio300 for a few minutes each morning--but it is going to be replaced by a Platinum Biomax 900 soon--I am interested in their use of 4, not 2, frequencies--may act a bit more like two slices from the sun's beamings, under which we evolved. More importantly, this new series can be used suspended from a stand, so that I can place it over my bed and relax while I absorb this good stuff.

My really exciting news is that I have discovered that, living in "my" city of Vitoria, is a woman, Soheila Mokmeli, who has recently been publishing, with others, papers on using lasers to treat serious Covid cases--here is one, and you can move from that to find the others if you wish: Sigman, "A 57 Year-Old African American Man with Severe COVID-19 Pneumonia Who Responded to Supportive Photobiomodulation Therapy (PBMT) First Use of PBMT in COVID-19." She has a long history of getting into Lasers in Iran and elsewhere. I find this very exciting-I am now less frightened of getting Covid (don't like the sound of the vaccines at this point). So far 2 "case studies" have been published--I believe 10 are aimed at. Her drive is to make this known and available in North America, which on this issue (and many others) has fallen far behind much of the rest of the world. She (obviously the laser user and knower in the list of authors) used an expensive and complex laser, but gives details of the treatment, and maybe a powerful LED.... well, we can all fantasise bit...
 
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the low dose of Mestinon I have been taking is doing some modest good.
I hadn’t heard of Mestinon before so I looked it up, interesting! Will put that on my (long) list of things to explore, thanks!
The helmet thing is definitely clearing my head
Maybe one day I’ll get one of these too. I might just start by targeting my head with my red/NIR unit for a minute or two in the meantime, once I feel ready to up my dose.
this new series can be used suspended from a stand, so that I can place it over my bed and relax while I absorb this good stuff.
This sounds heavenly!! I’m always having to rely on someone to move my unit back and forth from my bed to the door hook between uses. If only I was a welder, I’d make my own frame for it. :D
Soheila Mokmeli, who has recently been publishing, with others, papers on using lasers to treat serious Covid cases--here is one, and you can move from that to find the others if you wish: Sigman, "A 57 Year-Old African American Man with Severe COVID-19 Pneumonia Who Responded to Supportive Photobiomodulation Therapy (PBMT) First Use of PBMT in COVID-19."
Very cool. Will check these papers out.
 
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@Aspen any improvement after two months of red light therapy? I would like to try it as well, budget style.
Hi @Viala, yes! I’ve titrated up now to 9mins/dose x twice/day. I’ve been quite sick for the last month with an MCAS flare and a resulting magnesium deficiency, but amazingly my energy hasn’t plummeted like usual even though I’ve felt awful for other reasons. I’ve still been able to talk and interact with my family and even do daily self-care (washing face/brushing teeth), and I’m impressed with my sleep quality too, although it has been slightly interrupted from the magnesium deficiency. I haven’t even had a PEM episode for at least 2 weeks - it’s blowing my mind that I‘ve had my longest PEM-free stretch ever since I got sick, and during an MCAS flare at that!

I finally sorted out my MCAS trigger a few days ago and I feel immediately back to the same level of health/energy that I was before the MCAS spell, no real recovery time needed. I still plan to take it easy for a couple of weeks and not test my energy limits til I’ve had a little more symptom stability, but I feel great right now. I really do credit the light therapy for keeping me stable through the last few weeks.
 
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Hi @Aspen, it sounds great! And as you say there is no negative impact on MCAS which is a good thing.

Is it really hot under 1000W red leds? I've read that red light therapy can improve mitochondria work, as opposed to blue light which we get from screens and led lights all the time. I have smaller incandescent bulb set which is good for head and shoulders. These bulbs seem to cover similar light spectrum to red leds, only use more watts. I wonder if it makes much difference compared to the whole body set. There is some research on SAD where they used 7000 lux lamps and after about 1-2 months it helped a lot with depression, so basically what made the difference was the light that entered the eyes, but it can be different with red light therapy and CFS.
 

Chris

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@Viala; generating all that light does take electrical energy, which generates heat, but these larger units all incorporate cooling fans, so you should not feel much heat from them--this is a major advantage they have over sunlight on a hot day--I do not deal with sun's heat the way I used to, and I think this is common with ME, as it is also with MS. Anyway my smallish Platinum BIO 300 does not radiate any significant heat towards me.
 
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@Chris it's good to know, so it shouldn't be much difference with incandescent bulbs. My set has 300W and it is really warm but I wouldn't say hot. I am also sun sensitive but haven't noticed this effect with these bulbs, at least in 10 minute sessions. Maybe it has something to do with sun's light spectrum. Have you also noticed any improvement in the way you feel?
 
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Hi @Aspen, it sounds great! And as you say there is no negative impact on MCAS which is a good thing.

Is it really hot under 1000W red leds? I've read that red light therapy can improve mitochondria work, as opposed to blue light which we get from screens and led lights all the time. I have smaller incandescent bulb set which is good for head and shoulders. These bulbs seem to cover similar light spectrum to red leds, only use more watts. I wonder if it makes much difference compared to the whole body set. There is some research on SAD where they used 7000 lux lamps and after about 1-2 months it helped a lot with depression, so basically what made the difference was the light that entered the eyes, but it can be different with red light therapy and CFS.
I do notice a little heat by the end of my dose now, even though my unit has a good fan on the back, just because I’m in a small room and I have the door closed when I use it so I can strip down (my teenagers are schooling from home these days). Didn’t notice it until my recent 9 min titrated dose (I went up to 10 mins this week already too). But it doesn’t seem to affect me negatively - the room cools down quickly when I’m done and I’m definitely reaping the benefits. As I get into higher doses, I am curious if the heat will act a bit like a short sauna - I know sweating is an important tool for detoxing, and since I avoid heat like the plague now I never sweat anything out. Who knows, but I wonder if the benefits of the light will help me tolerate a bit of extra heat for detoxing purposes.

I imagine that using red light anywhere on the body is beneficial for the whole system, but I suspect that I wouldn’t feel the same relief in my leg and back muscles that I do when I use it on the full body. I’m sure others know more about that than I do though. ;)
 

Chris

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There are all-body effects from partial body coverage--the term is "abscopal". The little nasal units from Vielight work largely by irradiating the rich nest of blood vessels in the nasal cavity, and I have seen suggestions that if you have a small unit it might be worth aiming it at the veins visible on the inside of the elbow.
 
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I do notice a little heat by the end of my dose now, even though my unit has a good fan on the back, just because I’m in a small room and I have the door closed when I use it so I can strip down (my teenagers are schooling from home these days). Didn’t notice it until my recent 9 min titrated dose (I went up to 10 mins this week already too). But it doesn’t seem to affect me negatively - the room cools down quickly when I’m done and I’m definitely reaping the benefits. As I get into higher doses, I am curious if the heat will act a bit like a short sauna - I know sweating is an important tool for detoxing, and since I avoid heat like the plague now I never sweat anything out. Who knows, but I wonder if the benefits of the light will help me tolerate a bit of extra heat for detoxing purposes.

I imagine that using red light anywhere on the body is beneficial for the whole system, but I suspect that I wouldn’t feel the same relief in my leg and back muscles that I do when I use it on the full body. I’m sure others know more about that than I do though. ;)
Oh, so my unit is much warmer, it feels like the sun when I get closer. I think heat is good, if it's not too much for us. I've tested my unit on head and shoulders and other parts of the body and noticed different heat tolerance, for example stomach is much more sensitive than face. Full body unit would be great, I've read a lot of positive reviews on red light therapy and infrared lamps.
 
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There are all-body effects from partial body coverage--the term is "abscopal". The little nasal units from Vielight work largely by irradiating the rich nest of blood vessels in the nasal cavity, and I have seen suggestions that if you have a small unit it might be worth aiming it at the veins visible on the inside of the elbow.
Interesting! Is it laser therapy or regular red light therapy? I wonder how it would work with accupuncture points.