Red and near-infrared light therapy, LEDs

[Johannes]

My energy levels have not been rising. It seems that narrowband UVB does not help me. I have been using it for three weeks now. However, I will continue with it untill to January to see how much vitamin D I will get with it. After that, we have planned to fly to Spain with my wife for two to three months. They have mild winter but lots of sun. She will get her third covid-19 injection in the beginning of January, so I think we leave Finland at the end of January.

Remember I wrote about my visit to Spain? It was in September about three years ago. What is it in sunshine that helps me? Now I know more. I found yet one more CFS patient, this time from Great Britain, that gets tremendous help from sunshine, so I got excited again. Then someone commented her vlog, that it is not the sunhine or the warmth but the lenght of the day and how many hours of light you get. So I remembered my trip and I checked how long the day was in Finland and in Spain in September at that particular year. The lenght of the day was almost to the minute the same. So it can not be that the lenght of the day helps me feel better.

What other is there in sunshine that could help me? Then I checked how much sun actually was shining at that time.

The lenght of the days at 25th of September:

South coast of Finland:12 hour 4 minutes. UV index was 2. Cloudy weather for a month before I left Finland.
Malaga, Spain: 12hours 2 minutes. UV index was 6. Sunny days every day I stayed there.

For me it is clear. I feel better because ofthe sunshine, because of the radiation of it.
I also found a study to prove myself that this is typical in CFS but also that not all of the patients benefit from Summer.

https://pubmed.ncbi.nlm.nih.gov/9790493/

And then there is the heat, which causes many CFS patients problems. Also to me. I can handle 24 degrees of Celsius in the shadow but if it climbs up to 27, it is too much to me.

 

[Johannes]

My UVB trial is half way. I had my vitamin D measured. The effect of whole body UVB ligh was not that big. My vitamin D level dropped less than with out it. It caused my skin to produce approxinately 8 micrograms vitamin D per day. The sunshine produces it approximately 50 micrograms per day in my body. I did not use any vitamin D supplements or shoots during the trial. Now my doctor wants to try what are the effects if I both, inject vitamin D and try UVB light therapy, at the same time. This should take some three months.

I also used my red and NIR panels right after each UVB treatment. I did not get any notisable help from them. I am so tired again. Almost bed bound. Lets see if this experiment help me. Atleast, I clearly noticed that vitamin D gives me some strenght and I can again do some home work. It also helps with my chemical sensitivity and deppression.

Going to Spain at the beginning of March for two months is not sure yet, because of covid-19. It may be too dangerous to travel there. My doctor thinks getting in to sunshine of Spain will help me quite fast.

 

[YippeeKi YOW !!]

Now my doctor wants to try what are the effects if I both, inject vitamin D and try UVB light therapy, at the same time. This should take some three months.

That sounds do-able, and possibly productive of better results, and just to be sure, I'd consider continuing to couple it with red/NIR light as well ...

Hoping you can make it to Spain ..... would be a great place to spend Christmas, and it's just a hop, skip, and a jump to some of those terrific Basque restaurants !!!!

Thinking of you @Johannes, and holding a good thought !!!

 

[Johannes]

Thank you @YippeeKi YOW !!

 

[Johannes]

I would like to tell you one more thing before the end of this year. I had my UVB teraphy without vitamin D injections for 9 or 10 weeks. When my new treatment started at the beginning of December, vitamin D injections + UVB teraphy, I noticed a difference between these trials. Injections + UVB helped me a lot. Only UVB without injections did not help me att all. Now allmost all my deppression is gone. I feel energetic and can do more than for weeks. But my muscles have problems with energy and they gain lactic acid. I feel better but not as much as on summer, but more that in any December before this. It makes me wonder...

I don't bother you with the details but I made a mistake. First time I had 1 minute 30 second UVB teraphy once in two days. The second time I had 3 minutes 30 seconds every monday, wednesday and friday. I calculated that the amount of UVB radiation was the second time more than twice as big as with the first time. Maybe that's the reason. Or maybe, because last summer and autumn I almost had too much of vitamin D and due to that I couldn't inject at all between November and May, but this winter I am injecting once in three weeks, and maybe that's what makes me feel better. I don't know. The time will tell. And I will tell you that....also in my time.

I enclose a photo from Finland. This is my back yard forrest, where I walk with our dog. I don't own this forrest but I can walk there daily, doing my short walks. This photo is taken around 12 o'clock, so mid day. As you can see there is not much light there in winter and the sun doesn't rise up, almost att all. It is dark between 4 pm and 9 am. No wonder I can't get enough UVB from the sun. I hope you find this photo as peacefull and beautifull as I do.

Have a merry Christmas!

 

[Nord Wolf]

Has anyone tried red and near-infrared therapy (also called photobiomodulation) for CFS? Combined redlight (660nm) and near-infrared (850nm) light LED lamps are now quite affordable especially in chinese internet markets. They are not cheap but cheaper than earlier.

I am not talking about nasal red light therapy but whole body photobiomodulation. If you have CFS/ME and if you have tried this therapy, could you, please tell how it helped? Or did it actually help you?

Some CFS patients have been writing in the internet that it has provided them more energy. Some say that it doesn't help you right away but one needs some weeks treatment until you notice its effects.

Any experiences using photobiomodulation? How ofter you use it? How many minutes each time? How many milliwatts does your device provide?

I use an red/nir light panel for ME/CFS and my wife uses it for her Parkinson's. This is the one we have had for some years, though we paid a lot less that it is listed for now. https://www.amazon.com/Bestqool-Inf...refix=red+and+nir+light+panel,aps,100&sr=8-52
Unfortunately I don't notice any difference in my energy. But as my condition is in the severe range, I cannot use it as much as I would like. Optimally I'd like to use it twice per day at 3 to 4 minutes each. If we can remount it near the bed I could use it more and hopefully gain more benefit.
I have noticed it does wonders for skin rashes/dermatitis.
If down the line I notice any energy difference or an affect on any other symptom I'll be sure to let you know.
All the best-

 

[Nord Wolf]

I would like to tell you one more thing before the end of this year. I had my UVB teraphy without vitamin D injections for 9 or 10 weeks. When my new treatment started at the beginning of December, vitamin D injections + UVB teraphy, I noticed a difference between these trials. Injections + UVB helped me a lot. Only UVB without injections did not help me att all. Now allmost all my deppression is gone. I feel energetic and can do more than for weeks. But my muscles have problems with energy and they gain lactic acid. I feel better but not as much as on summer, but more that in any December before this. It makes me wonder...

I don't bother you with the details but I made a mistake. First time I had 1 minute 30 second UVB teraphy once in two days. The second time I had 3 minutes 30 seconds every monday, wednesday and friday. I calculated that the amount of UVB radiation was the second time more than twice as big as with the first time. Maybe that's the reason. Or maybe, because last summer and autumn I almost had too much of vitamin D and due to that I couldn't inject at all between November and May, but this winter I am injecting once in three weeks, and maybe that's what makes me feel better. I don't know. The time will tell. And I will tell you that....also in my time.

I enclose a photo from Finland. This is my back yard forrest, where I walk with our dog. I don't own this forrest but I can walk there daily, doing my short walks. This photo is taken around 12 o'clock, so mid day. As you can see there is not much light there in winter and the sun doesn't rise up, almost att all. It is dark between 4 pm and 9 am. No wonder I can't get enough UVB from the sun. I hope you find this photo as peacefull and beautifull as I do.

Have a merry Christmas! View attachment 46153

PS - I have a number of amazing friends as close to me as brothers who live in Finland! Great photo - Happy Yule from the New England mountains!

 

[Nord Wolf]

I would like to tell you one more thing before the end of this year. I had my UVB teraphy without vitamin D injections for 9 or 10 weeks. When my new treatment started at the beginning of December, vitamin D injections + UVB teraphy, I noticed a difference between these trials. Injections + UVB helped me a lot. Only UVB without injections did not help me att all. Now allmost all my deppression is gone. I feel energetic and can do more than for weeks. But my muscles have problems with energy and they gain lactic acid. I feel better but not as much as on summer, but more that in any December before this. It makes me wonder...

I don't bother you with the details but I made a mistake. First time I had 1 minute 30 second UVB teraphy once in two days. The second time I had 3 minutes 30 seconds every monday, wednesday and friday. I calculated that the amount of UVB radiation was the second time more than twice as big as with the first time. Maybe that's the reason. Or maybe, because last summer and autumn I almost had too much of vitamin D and due to that I couldn't inject at all between November and May, but this winter I am injecting once in three weeks, and maybe that's what makes me feel better. I don't know. The time will tell. And I will tell you that....also in my time.

I enclose a photo from Finland. This is my back yard forrest, where I walk with our dog. I don't own this forrest but I can walk there daily, doing my short walks. This photo is taken around 12 o'clock, so mid day. As you can see there is not much light there in winter and the sun doesn't rise up, almost att all. It is dark between 4 pm and 9 am. No wonder I can't get enough UVB from the sun. I hope you find this photo as peacefull and beautifull as I do.

Have a merry Christmas! View attachment 46153

Here in New England we also have difficulty gaining enough Vit D naturally from September through April. The sun is just too low and we have a tendency to have a lot of cloud cover.

My immune system used to be quite low and I got ill often in autumn, winter and early spring with colds and the flu. One day my doctor told me to start taking a minimum of 10,000 iu's of Vit D3 and 250 mcg of Vit K2 daily. Supposedly if one is taking that dose, many common viruses like cold and flus cannot infect the human body as well.


I started taking 10,000 iu’s of D3 and 250 mcg of Vit K2 from May through August and 20,000 iu’s of D3 and 250 mcg of K2 and 250 mcg of K1 from September through April. Ever since I’ve not been ill with cold or flu since. It has been 4.5 years now.


I can’t say the D3 gives me energy (nothing does these past many years), but I certainly believe it has helped my immunity a lot.


I think though my friends in Finland say they can’t obtain D3 due to being part of the EU. An insane law if you ask me. Interesting you're able to get the injections.


All the best-

 

[Johannes]

There is no law about how much vitamin D one can dose, in Finland. You can buy 10mcg, 20mcg, 50mcg and 100mcg tablets in most of the shops. Our national nurishment board recommends only 10 to 20 mcg per day but doctors say that what ever keeps the level above 75nmol/l is good. That is roughly 50 to 80mcg daily. Doctors say one should not exceed 100mcg per day. Earlier, my doctor prescribed me 2500mcg injection which was injected every two months.

Here is one internet page from a typical finnish vitamin reseller. This is a pharmacy but they are sold in any food store too.

https://www.yliopistonapteekki.fi/vitamiinit-ja-ravinto/vitamiinit/d-vitamiini

 

[Nord Wolf]

There is no law about how much vitamin D one can dose, in Finland. You can buy 10mcg, 20mcg, 50mcg and 100mcg tablets in most of the shops. Our national nurishment board recommends only 10 to 20 mcg per day but doctors say that what ever keeps the level above 75nmol/l is good. That is roughly 50 to 80mcg daily. Doctors say one should not exceed 100mcg per day. Earlier, my doctor prescribed me 2500mcg injection which was injected every two months.

Here is one internet page from a typical finnish vitamin reseller. This is a pharmacy but they are sold in any food store too.

https://www.yliopistonapteekki.fi/vitamiinit-ja-ravinto/vitamiinit/d-vitamiini

Thanks for the link. I’ll send it to my Finish friends. I’d be surprised if they don’t know about it.


Yes many western medical doctors over here say that we only need extremely low doses of Vit D3, but any naturopath or other more progressive medical professional in the States agree that the average person living in the north should be getting a solid 10,000 iu’s per day. That is 250 mcg. It is recommended that people with various diseases, such as ME/CFS, Parkinson’s, MS, Lupus and others take a minimum of 20,000 iu’s daily, which is 300 mcg. My wifes Parkinson’s specialist has her taking 50,000 iu’s of D3. I have a dear friend with a rare neurologic deterioration disease whose specialist has her taking 30,000 iu’s.


So I think as with most things, it comes down to the individual body, circumstance and holistic picture.


All the best-

 

[Johannes]

... any naturopath or other more progressive medical professional in the States agree that the average person living in the north should be getting a solid 10,000 iu’s per day. That is 250 mcg. It is recommended that people with various diseases, such as ME/CFS, Parkinson’s, MS, Lupus and others take a minimum of 20,000 iu’s daily, which is 300 mcg. My wifes Parkinson’s specialist has her taking 50,000 iu’s of D3. I have a dear friend with a rare neurologic deterioration disease whose specialist has her taking 30,000 iu’s.[/QUQUOT

I would be very interested to know what your vitamin 3D level in your blood is. One year, I tried 250mcg daily and because of sunshine, my vitamin 3D level rose up to 405nmol/l. That is close to toxicity level. Actually our doctors say that more than 375nmol/l could be toxic. Does your doctor follow up your ionized calsium level from your blood? How about parathormone? With doses over 250mcg it would be wise, because excess calsium starts to build up into soft tissues instead of bones, causing all sorts of troubles. However, I have not found what is the actual toxicity level. 405 nmol/l wasn't for me. It may depend on individual. What do you know about maximum vit 3D level in blood?


Thanks!

 

[Nord Wolf]

I completely agree with that research. Too much can cause calcium to leach into the blood. My D levels test at 50 nmol/L and 25ng/mL.

My blood calcium levels test at 9.5 mg/dl. For my age and health this is considered “normal/good”. At least in the States those numbers are considered in normal range.

Medically it is said if an adult takes 60,000 iu’s daily over a period of a few months it can reach toxic levels in the body. That is a pretty extreme dose taken over months.

I found medical statements claiming a number such as 364 ng/mL is a true toxicity, but that number was taken from people ingesting 60,000 iu's daily for 3-6 months.

I typically pulse my D intake from 10,000 to 20,000 depending upon the time of year and my health. So far no toxicity levels or hypercalcemia - just a stronger immunity to viruses.

All the best -

 

[Nord Wolf]

I know two people with MS and there doctors gives them 100,000 iu's of D3. Their blood calcium remains in healthy levels. Just one example of a disease that requires mega doses to support the system without causing normal damage as it would in a healthy persons body.

 

[Johannes]

I spent lots of my summer time at the sea and in the archipelago, where I got lots of sunshine. At one particular year I measured 162ng/ml = 404nmol/l vitamin D from my blood. I was using vit. D supplements as well. My ionized calsium was fine as well as parathormone and vit D 1,25. My german doctor recommends me 250mcg = 10 000IU per day during winter.

 

[Nord Wolf]

I spent lots of my summer time at the sea and in the archipelago, where I got lots of sunshine. At one particular year I measured 162ng/ml = 404nmol/l vitamin D from my blood. I was using vit. D supplements as well. My ionized calsium was fine as well as parathormone and vit D 1,25. My german doctor recommends me 250mcg = 10 000IU per day during winter.

Lots of time by the sea - nice. Most of my friends over there live in Helsinki and Turku, so they also get lots of time by the water.

10,000 IU's during winter sounds solid. Most healthy people I know in the States that see naturopaths take much during winter. Of course the FDA always recommends an incredibly inadequate level of vitamins and minerals for people. If you can keep a population on the depleted side, you keep folk unhealthy and reliant upon the medical system. Every naturopath I've worked with over the years has said the same thing, whatever the FDA recommends, you need more.

 

[Johannes]

I ended my UVB therapy for now. Doctor's orders. It was stopped because it doesn't seem to help with my symptoms and therefore give me unnecessary radiation. I will now continue with red and NIR light therapy.

My vitamin D dosage was changed higher. I will begin my outside sunshine therapy around Aprill. Earlier it has started sometimes in the beginnig, sometimes around the third week of April, depending on if the sun was shining or not. I will use my UVB device for a month before I go to sunshine and continue to use it every second day, if cloudy, until around the end of April. It may help to get the (symptoms relieving) influence of the sunshine earlier. That has earlier happened with red and NIR light, so I am hoping to get even more benefits from them both.

If I remember correctly, using red and NIR light therapy for a couple of months before summer, my symptoms started to disappear appr. two weeks earlier than before, when I was without red and NIR therapy. Accurate information can be found from my previous threads. Also, higher vitamin D level in the beginning of Summer gave me yet two extra weeks without most of my symptoms. I am not using any light therapy during Summer but only vit D and methylcobalamin.

Also, I got two months with less symptoms at Autumn if I spent my whole summer in sunshine. In the Summer of year 2019, when I was only some 30 days in sunshine, my symptoms started to worsen in the middle of September. In year 2020, when I was three months in sunshine, they started worsen around the beginning of December. Last summer, when I was two months in sunshine , my symptoms started in November.

These things can give me altogether three months more quality time, compared to year 2014, when I didn't use vitamins or light therapy or wasn't able to spent my time at the sea and not much in sunshine either. That means worlds to me. I feel almost well between the 15th of July and the end of August. Between 15th of July and the end of AugustI will get tired only if I do too much but I have no other symptoms. Not even PEM. My too much is quite a lot. I can cook, sail, go in for hobbies, clean my home. Sailing is the most physical and demanding for me. After living one week onboard and sailing 2 to 3 hours every day, I need to rest for two to four days with out sailing, only living in the boat.

So, around June I will know how much UVB light + red and NIR light and the higher vit D level have helped me. I will then tell what happened. Until then, I am bed pound. Luckily, I am not deppressed like in previous Winters, due to my vit D and methylcobalamin injections...but only, if I manage to not do too much.

 

[Johannes]

I am now selling my blue and green light LED panel and dismanteling my narrow band UVB light teraphy equipment because it is now clear to me that they did not help my CFS symptoms. I will keep my red and near-infrared LED panel, because it helps both me and my spouse.

I am happy that the sun is shining again. I have spent approximately one month laying three hours almost daily outside, sun bathing. I am feeling more energetic and more positive. My mood is better. It has began once again! In a month or so I will be able to go in for hobbies. On Friday I was able to do some cleaning and washing dishes. Today I changed new sheets to my bed and washed old ones in washing machine. On Monday I did a two hour trip to shopping. A month ago this would have caused me really bad PEM for six days. Now I didn't get PEM but was very tired, but only for two days. This all is happening to me because I am now able to lay in sunshine again after winter. UV index in Finland is now above 3.

Finally, I got my wifes permission to buy two hours cleaning, once a month untill to the end of the year. It has been so dirty at home because my wife is also too sick to clean. This was made possible because of finnish government passed a law that says, that if a person (meaning sick people ) needs care services at home, government pays 60% of the costs!

It is now clear to me that I need to move to South of Spain for Winters, because there is lots more sunshine over there in winter compared to Finland and sunshine makes me feel so much better. I don't know where to get money for that yet. But we plan to fly there with my wife and the dog around December and come back around April.

I had my health evaluated with wast laboratory tests and interview. Also genes were evaluated. According to the test I should die when I am about 64 years old. Sounds terrible, right? I should get diabetes and a heart failure. This all because I am not able to exersise. But if moving to Spain helps, and I could walk there more, and do some rubber band exersises, with that I should get some ten to 15 years more time to live. And could even avoid diabetes and maybe heart failure. Interesting and terrifying...

Have a nice Summer!

 

[YippeeKi YOW !!]

I had my health evaluated with wast laboratory tests and interview. Also genes were evaluated. According to the test I should die when I am about 64 years old. Sounds terrible, right?

Only until you consider that cemeteries are full of Drs and lab result analysts, graves which are occasionally visited by their still-living patients who have very large, very wide grins on their faces.

 

[Johannes]

Only until you consider that cemeteries are full of Drs and lab result analysts, graves which are occasionally visited by their still-living patients who have very large, very wide grins on their faces.

you are right! Nobody really knows about somebodys real life expectansy. They are really all quesses. But I should cut some of my alcohol usage... otherwise there is not much more to do.

 

[Nord Wolf]

I am happy that the sun is shining again. I have spent approximately one month laying three hours almost daily outside, sun bathing. I am feeling more energetic and more positive. My mood is better. It has began once again!

Great to hear your posting Johannes. I have been monitoring my reactivity to UV rays and a lack thereof for the last three years. I too have found that a lack of adequate UV Rays and thus direct sun exposure severely worsens my ME/CFS and instigates almost constant states of PEM. During the warm sunny season (June through August), I am affected by the disease itself, but have yet to experience any strong PEM. However, once the middle of September arrives, my symptoms increase every year. Once mid October gets here I get more regular and intense episodes of PEM and normal ME/CFS symptoms. By November PEM is an almost daily state of being all the way through mid April. Only by the second week of May when the UV levels have increased and I can once again get regular UV exposure, do my symptoms start to lessen.
I live in what is called the cloudiest area of the entire continental United States. Our average max UV from November through March is 0-1. We have an average of over 70% cloud cover from November through March, and sometimes through April, like this year. Our UV's for April didn't rise above 2.
I have tried sunlamps and panels of many kinds and brands with no noticeable difference. I take 20,000 ius of Vitamin D3 with 200 mg of Vitamin K2 and K1 from November through April, and still none of my symptoms change. So it isn’t the Vitamin D that affects my condition.
However, once I can get regular exposure to the sun, of many hours a day, do my symptoms start to lessen. In the past it seems to take about a month of a lot of direct UV exposure before my symptoms fall backward to as low a level as they get, and PEM becomes very mild and difficult to fully instigate.
I cannot say what it is about the sunlight and UV rays that help my condition… but there is no doubt that the exposure drastically helps improvement.
My wife and I are considering trying to relocate to a southerly region in America with great sunlight and UV levels for the months of November through March. Then we would live here in New England for the sunny season. We are not sure how we would financially be able to mange that though. But we need to try something, because the complete lack of UV rays in autumn, winter and early spring months are killing me.

Finally, I got my wifes permission to buy two hours cleaning, once a month untill to the end of the year. It has been so dirty at home because my wife is also too sick to clean. This was made possible because of finnish government passed a law that says, that if a person (meaning sick people ) needs care services at home, government pays 60% of the costs!

Your taxes are high enough they certainly should pay 60%, at least!
Will you be hanging out on your sailboat again this summer?