Red and near-infrared light therapy, LEDs

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Second star to the right ...
For example joovvy sent me misleading information concerning PBM amd CFS.
They were one of the many manufacturers whose sites turned me off and have postponed my purchase of any red/nir system so far ....
claims in its user manual that UVB is beneficial in many ways and provides you lots of health benefit including vitamin D. This is BS in many ways! Just for example UVA has nothing to do with vitamin D synthesis! 🤣
Yeah. The amount of absolute bullcrap that many sellers of these systems shovel to prospective buyers is truly impressive in both absolutely cheeky inaccuracy and fathomless depth of deception ....
 

Johannes

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So, yesterday I finally received my UVB light electrical parts. My quess is that it takes a couple of weeks to make changes to my solarium. Then I can try UVB light.

So UVA light caused me taning in three weeks but it didn't help me get more energy. I used it with red, NIR, green and blue LED light. I used it 10 minutes a day to my back and ten minutes a day to my front. I am beginning to think that it may be that the light should be coming through ones eyes in order to get full benefits. Ofcourse one can't use UV light for ones eyes. It would be dangerous. I also think my treatment time is too short. After all, I get many hours of sunlight during a summer a day but only half an hour PBM a day.

And then there is this new finnish study:

https://www.jneurosci.org/content/41/6/1265

Who knows what other benefits sunshine may have when dosing is adequate.
 

Aspen

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Thanks for all of this, @Johannes ! I’ve been reading this blog since last fall (as a forum guest) and it’s been a big encouragement to me. :thumbsup: I finally signed on as a member not too long ago. I’m trying my own red/NIR therapy and it’s going well so far, although I’m taking it pretty slow. Looking forward to hearing more from you over time.
 

Johannes

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The sun is shinig again 🌞 I have been laying down at the back yard and got already some very mild sun burn. Not really a burn but a bit reddish skin. Like last year, red and NIR light has halped me so that I can have my sunshine with out nausea or other unwanted side-effects. But I noticed that if I am in the sunshine more than 1 hour 30 minutes, I start to feel uncomfortable. But I know that after a few days 1,5 hours become 2 hours and a bit later 2,5 hours and so on, with out feeling uncomfortable. I also noticed that if I am too long in the sunshine, I start to be over stimulated/over energetic and I can't be still just laying in my sofa. I am over achieving. I quess the sunshine is causing some human cells to produce energy...maybe.

My UVB treatment device is not ready. The last month has been quite hard for me. I have been enthusiastic to do things even if I really would have to lay in a bed or a sofa. I have been quite weak and tired. I have injected methylcobalamine to ease my cognitive problems. I reckon the UVB device is ready in a week or two. But I can't use it before autumn because I would quite propably burn my skin with it. Why? Because it would be very hard to estimate the UVB dosage coming from the sun and combine it with very powerfull UVB lamps. It would be dangerous. It is a shame that I have to wait so long to see if it helps. I think that would be around January 2022 earliest. If it doesn't, it may be a time to move closer to equator for winters. I live in Finland, so maybe to Southern parts of Greece or Spain. Some plans have been made.

By the way, I got my first corona shot last friday. The only side-effect was sore arm. I have sometimes had the same effect from normal seasonal flew vaccine. I had Phizer-Biontec vaccination. My wife got it too. Her arm wasn't sore but the spot where they injected it was a bit sore. These side-efect disappeared in a couple of days. The next shot is in July. I was a bit affraid to take the shot because I had been feeling so weak and tired for so long. But I wanted to do it becase my wife is a part of a risk group that were among the first to get the injection. I did it for her sake when it was offered.

I am sorry that I couldn't give you better news about my UVB experiment. I hope you all have been safe.

Waiting for summer...
 

Viala

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Hi @Johannes, very informative thread! Do you notice any significant changes this year as compared to the last one? I'm interested in light therapy as well and have tried some in the past but never for too long. I also think it may have a lot to do with our eyes. I remember you mentioned using SAD lamp in the beginning, I wonder for how long did you use it and how many lux did you get from it?
 

Johannes

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Hi @Johannes, very informative thread! Do you notice any significant changes this year as compared to the last one? I'm interested in light therapy as well and have tried some in the past but never for too long. I also think it may have a lot to do with our eyes. I remember you mentioned using SAD lamp in the beginning, I wonder for how long did you use it and how many lux did you get from it?
No notisable changes but the sun has been shining here only nine days and now it will not shine for two weeks. :'( So it is not possible to say anything yet.

My SAD lamp was 2500 lux measured 1,0 meter (3,3feet) from the lamp and 10 000lux measured 0,5 meter from the lamp. The size of the unit was 30cm x 60cm which is approximately 1,0ft x 3,0ft.
 

Viala

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No notisable changes but the sun has been shining here only nine days and now it will not shine for two weeks. :'( So it is not possible to say anything yet.

My SAD lamp was 2500 lux measured 1,0 meter (3,3feet) from the lamp and 10 000lux measured 0,5 meter from the lamp. The size of the unit was 30cm x 60cm which is approximately 1,0ft x 3,0ft.
10000 lux is quite enough :) Do you remember for how long did you use it and how many minutes a day? Oh and you had your eyes opened, right? Your thread encouraged me to give it a go so I will be testing now red light / bright light therapy myself with regular bulbs, I get 10 000 lux from it as well so at least this should be comparable.

I was also thinking about what you wrote that you feel much better in warmer months when there is a lot of sun. So my idea, maybe it's not just the sun that makes you feel better, but the fact that you spend more time outside. Maybe there is some environmental factor that makes you feel bad, so that when you are out more often you feel better?
 

Johannes

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10000 lux is quite enough :) Do you remember for how long did you use it and how many minutes a day? Oh and you had your eyes opened, right?

20 to 30 minutes a day, while reading magazine or being in the internet with my tablet, for three months. Yes eyes open. And always the same time: 9.00 o'clock. I notised that after a few days I didn't need alarm clock because bright light syncronised my circadian clock. I woke up at eight every morning.

I was also thinking about what you wrote that you feel much better in warmer months when there is a lot of sun. So my idea, maybe it's not just the sun that makes you feel better, but the fact that you spend more time outside. Maybe there is some environmental factor that makes you feel bad, so that when you are out more often you feel better?
I am quite sure that it is the sun itself that helps me. I will enclose a couple of interesting document concerning sunlight:

https://ar.iiarjournals.org/content/36/3/1345.long

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897598/

They are pretty long texts.
 
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Viala

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@Johannes Thanks for interesting docs, I'll look into them soon.

So it seems that bright light works well for regulating circadian rhytms, it would be nice to wake up before the alarm clock. Do you still wake up at eight after one year? I think I will test it for longer than 30 minutes and see what happens.
 

Johannes

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@Johannes Thanks for interesting docs, I'll look into them soon.

So it seems that bright light works well for regulating circadian rhytms, it would be nice to wake up before the alarm clock. Do you still wake up at eight after one year? I think I will test it for longer than 30 minutes and see what happens.
According to studies the treatment time should between 30 and 60 minutes and one should have the therapy between 5.00 to 10.00 o'clock.

My doctor has found very interesting papers dealing with the problem that lack of sunlight is much more as mere vitamin D3 deficiency. Sunlight seem to be involved into sulfation of the precursor of vitamin D3, 7-hydroxycholesterol. Steroid hormones are described to be sulfated to a great deal which serves as a storage form of steroids. Sulfated 25-hydroxyvitamin D3 is said to be important for mood and proper brain function. The main author of one of these studies is Stephanie Seneff. I am quessing that this could be the key or one of the keys to my well being.
 

Viala

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According to studies the treatment time should between 30 and 60 minutes and one should have the therapy between 5.00 to 10.00 o'clock.
Yes, there are couple of studies about it. I've also seen other that recommend midday light instead of the morning, which may be better for some, with 1 hour sessions goal at least for a couple of weeks.

My doctor has found very interesting papers dealing with the problem that lack of sunlight is much more as mere vitamin D3 deficiency. Sunlight seem to be involved into sulfation of the precursor of vitamin D3, 7-hydroxycholesterol. Steroid hormones are described to be sulfated to a great deal which serves as a storage form of steroids. Sulfated 25-hydroxyvitamin D3 is said to be important for mood and proper brain function. The main author of one of these studies is Stephanie Seneff. I am quessing that this could be the key or one of the keys to my well being.
Interesting, there definitely is more to sunlight than D3, otherwise bright light would not work for SAD. Probably the best results come from combined effect of sunlight on skin and eyes, maybe heat plays a role here as well.
 

Johannes

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My UVB unit is ready but I can't use it because now it is time to spent time in the sunshine. If I would use both, I could burn myself. New UVB bulbs have to be stabilized for one hour because during the first hour they release uncontrollable amount if UVB: too much and impossible to estimate how much. This is normal. After stabilization they are safe to use.

There is one other thing to do before I can start using them next autumn: finding the right dosage.


This is unnecessarily technical text that you can skip if you like:

Finding the right dose can only be done when the sun is not shining atleast for two days. It is done so that one stands in front of the light bulbs for 20 seconds, keeping always the same distance between the bulbs and oneself. Then waits for a day to see if the color of the skin becomes slightly bit reddish. If not, the next time one tries 40 seconds, and the next time 1minute, then 1min 20sec., and so on until there is a light colour change in the surface of the skin. That colour change means that the skin is about to burn, so one has to be carefull. This is called finding of the minimum erythema dose (MED). When this has been found, then the time spent in front of the bulbs will be reduced so that there is no color change. The new time will be propably some 30 second or so less. I am bot sure about how much less but I have the information somewhere in the treatment quide. This will vary according to ones equipment anyway. This should be done continuously but every second or third day untill the MED is found. When one does it propably a couole of times in two weeks, it may give wrong dosage and tye procedure would have to be done again in Autumn. But it will be aesier in Autumn because I don't have to start from 20 second but maybe from minute of two minutes depending what my MED has been in summer. The maximun time has been varied person by person between appr two minutes to four minutes depending of ones natural colour of the skin. One more thing. The bulbs have to be on five minutes before one starts the treatment. The radiation is much stronger during the few first minutes but stabilizes after four miminute

So, it would be fun and interesting to test this unit. According to reseach it is the UVA radiation that causes skin cancer, not the UVB. These kind of units are frequently used by tye people with enzema and psoriasis and after years of usage, there hasn't been any cases of skin cancer. Although, they use it for two to four times a year during a couple of weeks at the time. In my case, I will use it three times a week starting from December until Aprill. I don't believe that I would get cancer from this. The evidence is pretty convincing.
 

Johannes

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Then something else.

Last Summer I noticed that when I had been using my red and near-infrared unit three months before the sun really started to shine only on Aprill, I got better one month earlier than during the previous Springs since year 2012. It seems that now that I have been using it the whole Winter, that I feel better yet another month earlier.

For example in year 2014, I was able begin to fix my boat starting in the beginnig of May and was so tired all the time with PEM and lots of other nasty CFS symptoms. This year I started to fix the boat in the middle of Aprill and I was also feeling pretty crappy with my CFS symptoms. But just this week I was six hours fixing the boat and I didn't get any other symptons but tiredness, which seems to be going away in two days. Not sure yet though. But I feel a lot better. Also, last Autumn was a lot better that the Autumns before. Usually, my symptoms start to worsen at the end of September. Last year my symptoms started to worsen in the beginning of December. So two months later than during earlier Autumns. Altogether atleast three months more quality time a year! But as always, I feel the best starting appr. in the middle of July untill to the end of August.

I have to warn you about two things.

1) This all may sound like so good but I have only heard of two other CFS patient that get this effect from the sunshine. I am sure that there would be more people if people would just hear that the sunshine could help them. Most of us CFS patients spent their whole life inside because they feel lousy in the sunshine. So do I, but I am willing to tolerate this lousy sick feeling for a month or so because I now the sunshine helps me. And with red and near-infrared light I have got rid of most of these problems that I used to have in the beginning of every summer, when I started to sunbath.

2) vitamin D has its own effect on my health. I don't know any other CFS patient that would benefit so much from high dosages of vitamin D but me. But my german doctor knows dozens of them during her time as a doctor. Vitamin D with the dosage on 200 micrograms a day really helps. I have got rid of appr. twenty symptoms with it. Some of them are similar to the symptoms of vitamin D deficiency and many are symptoms of Mast Cell Activation Syndome. For example, I used to get bad headaches if I did too much physical exercises or used too much my brains. With this dosage I don't get these symtoms during Summer and rarely during Winter. So it may also be that some of me feeling better may come from vitamin D shoots that I frequently get. Especially the last year because my vitamin D level accidentally got way too high.

I know that both of these defenetly help me, but I don't know how much vitamin D helps and how much the sunshine/red and near-infrared helps.

One more thing. I have a genemutation that causes me problems with too much homocysteine in my brain. The sunshine takes care of this problem during Summer but during Winter, I need frequent methyl cobalamine (active form of vitamin B12) injections to takes care of the problem. The symptoms are cognitive such as depression, anxiety, I am very stresssed and feel angry and irritated most of the time, I have poor memory and concentration and I have brain fog. These are all gone during summer and also during Winter if I get my methyl cobalamine injections during Winters.

So, please take these into concideration when trying your own treatment. I hope you all feel better during Summer.

Have a nice Summer! 😎
 
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pamojja

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I have only heard of two other CFS patient that get this effect from the sunshine.
Though I'm not the typical ME/CFS sufferer, sun was instrumental in my remissions too. For me it started with a walking-disability more than 12 years ago (from a 80% stenosis at my abdominal aorta bifurcation; PAD), 3 years later a for 1 year persisting chronic bronchitis, where I threw the towel and flew to a South-Indian beach for 5 months, and since then always for 5-6 weeks in January, always in the deepest winter. Except this year, 8 years in total.

The bronchitis was over the first time (later earning me a diagnosis of COPD; asymptomatic since). Walking-disability went in remissen the 7th, and remaining ME/CFS symptoms of constant PEM (still working part-time) the 10th year.

Mainly using Linus Pauling's recommendations against my PAD, and the many antioxidants in it, I interrestingly never got sun-burned. Even though always arriving bleached from our winters, I always start right away with 2x 2 hours sun-bathing each day, interrupted by long swims out in the ocean.

Especially the last year because my vitamin D level accidentally got way too high.
For me the last remission from PEMs too occured after accidentaly overshooting my 25(OH)D to 135 ng/ml. Otherwise with 200 mcg/d all those years in average at 70 ng/ml.
 

Johannes

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Except this year, 8 years in total.
Did you notice any difference in your health when you didn't get your sunshine in South-India that year?

135ng/ml = 340nmol/l, so quite high.

I overshooted last year to 162ng/ml = 405nmol/l. This happened because I was still looking a proper dose and it just happened that I spent more time in the sunshine than in previous summers. My dose was 250mcg per day. My doctor said that it was not dangerous but I stopped injecting for six months during which time it came down to 48ng/ml = 120nmol/l. This year I inject 2500 micrograms every 14 days = 178mcg per day with which it should be remain around 100ng/ml = 250nmol/l in summer time. During next winter I am going to try narrow band UVB light therapy to replace sunhine with that, maybe 3 minutes to back and 3 minutes to font, three times a week.

For me the last remission from PEMs too occured after accidentaly overshooting my 25(OH)D
Interesting. For me, high enough vitamin D level causes PEMs to disappear.
 

pamojja

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Did you notice any difference in your health when you didn't get your sunshine in South-India that year?
Mental health surprisingly didn't get worse, but for the first time since my walking-disabiity remission I felt a very slight pain in my left thigh mostly when waking. Interestingly end of last year also an ultra-sound evaluation found less blood circulation in the left leg, and was asked if I felt anything of it. Which I wasn't at that time.

Last month there was a whole week of sunshine and I took as much as I could each day. And this fickle disappeared again. Now with weeks of rain again only very rarely just felt a little again.

135ng/ml = 340nmol/l, so quite high.
That lab result taken in fall initially was lost, so was retested a week later interestingly already 25 ng/ml down again.

During next winter I am going to try narrow band UVB light therapy to replace sunhine with that, maybe 3 minutes to back and 3 minutes to font, three times a week.
Inspired by your postings, I too searched for a reasonable priced solution, for example with reptile UVB tubes. But didn't made it past the googling and some shop inquiries yet. Maybe next year, if still not possible to go south again.
 
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Johannes

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Mental health surprisingly didn't get worse, but for the first time since my walking-disabiity remission I felt a very slight pain in my left thigh mostly when waking. Interestingly end of last year also an ultra-sound evaluation found less blood circulation in the left leg, and was asked if I felt anything of it. Which I wasn't at that time.
Interesting again. My left side of the body has had some problem too. My muscles from the heel to the lower parts of my spine have been weaker on the left side. And it has caused me neck pain. This is because when my spine has not been adequately supported on lower parts, it has influenced the whole spine up to the skull causing my neck to be slighly poorly supported. The most weak muscles have been in the left side of my left thigh and shank. I have had to train those muscles more than the same ones on the right leg. Now, after what you just wrote, I am now wondering, could this be related to poor blood circulation on the left side of the leg... it hasn't been measured. And CFS patients do have weaker hart than healthy people. Could it cause this...

Inspired by your postings, I too searched for a reasonable priced solution, for example with reptile UVB tubes. But didn't made it past the googling and some shop inquiries yet. Maybe next year, if still not possible to go south again.
Note that UVA radiation causes cancer.

Well I haven't found any manufactorer/re-seller that would sell narrow band UVB equipment unless one has a prescription for UVB therapy for enzema or psoriasis or vitiligo (as described in here for example: (https://solarcsystems.com/en/ordering/ordering-tips/)). But I haven't looked very hard. Here also one unit from Sweden: https://www.medisun.se/en/produkt/medisun-250-2

My unit is made for a prototype of medical UVB equipment with a special permit to manufacture one. My friend has a company that helped me built it but after this project they are not interested to start manufactoring them.
 

Aspen

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Thanks for posting about your seasonal changes @Johannes and @pamojja ! This is only my second year being ill, but I did get noticeably better last summer after spending all summer outside in the yard (mostly in a hammock under the trees :redface:)... I felt so shocked when I went back to being completely bedbound in the winter again. I’ve been doing red/NIR light therapy since February and making slow improvements. Yesterday I spent an hour reclining outside in the sun, my POTS really acted up in the heat though and I feel exhausted today. But your posts give me encouragement to keep going outside. Before I got ill I spent every spare second outside, it’s so good for the soul!