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A treatment that helps me tremendously

Johannes

Senior Member
Messages
312
@Judee , I was just thinking that I become hypeactive after having done way too much physial activities but that happends almost always the next Day. This may not have any connection to your situation.
 

Nord Wolf

The Northman
Messages
541
Location
New England
I posted this on the thread concerning red-infrared light... but thought it probably goes better here.

“Studies in the past decade indicate that insufficient sun exposure may be responsible for 340,000 deaths in the United States and 480,000 deaths in Europe per year, and an increased incidence of breast cancer, colorectal cancer, hypertension, cardiovascular disease, metabolic syndrome, multiple sclerosis, Alzheimer’s disease, autism, asthma, type 1 diabetes and myopia.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7400257/

If you research you can find a number of sites that cite research that shows direct sun rays on a regular basis, in safe amounts per skin type, can heal mitochondria, assist in the production of new mitochondria, as well as help the body recycle old mitochondria. Direct UVBs also help the body increase red blood cell production, which in-turn helps increase oxygen in the body. Yes UVAs are harmful to the body, but UVBs counteract the UVAs and help protect the body from the harmful UV ranges. So long as our sun exposure does not result in sunburns, the body metabolizes the UVs and Vitamin D synthesis produces Vitamin D3, simplistically speaking.

In my humble opinion, if the core issue preventing optimal health, or even proper healing, is an inability of the body to produce cellular energy, healing must begin there, as opposed to a specific body organ system. We cannot learn to run before we learn to stand, as the old saying goes.

As I have stated earlier this year, I spent last December through early April 90-95% bed ridden. My maximum step allowance over the winter, per day, ranged between 30 and 100. Since being able to lay in the sun regularly, and absorb her energy, I’ve been able to take short easy walks through the yard, or on occasion through a festival and gain an average of 3,000 steps per day, and a maximum of 5,000 in a single day about once per week. I’ve been able to do light chores, mostly daily since early May. I also recover more quickly when I crash that when I wasn’t getting sun exposure, I’m still unable to specifically exercise without crashing, but my daily overall activity has increased dramatically since focusing daily on Heliotherapy.

Yes I am still tired most of the time. Yes I can get very weak if I do slightly too much. Yes my whole body can flair up in terrible pain if I push my “energy envelope” and do slightly too much. Yes if I push it my cognitive function plummets as well as my eyesight. Yes I still require an average of 10 hours of sleep per night, and then naps or lots of reclining rest times each day. BUT my activities, daily steps and energy have drastically improved since the winter! Improving the entire body from this “neuroimmune” disease takes a lot of time, wicked amounts of patience and there is zero guarantee of high level recovery. But I do believe in an improved state of living, because being as low as bed ridden just sucks!

I started out after winter by getting 15 minutes per day in direct sun. I had to slowly build up my skin pigment to endure more sun, safely. After all, practically zero UVs or direct sun from October through mid April brings out my lily white Scandinavian and northern Germanic skin color! Also, the whiter the skin is, the more it reflects the sun rays away from the body. I feel this is the reason it takes us a while of regular sun exposure in early spring to start building pigment. The darker the skin gets, the longer we can lay in the sun and the more quickly we darken.

At the start of May the UVs here maxed at level 3. By the end of May they were averaging level 5. Now with the sun being as far north as she goes for the year, our highest UV days top out at level 9, but average 7. Obviously the time of day (angle of the sun), clarity of the sky, humidity levels and particulate levels all determine the exact amount of UVs at any given time throughout each day. No sunscreen for me either. Sunscreen blocks over 93% of the bodies ability to absorb Vitamin D. I also eat a diet and follow a supplement regime that is potently high in antioxidants. The key is timing.

For the last few weeks I’ve reached a direct sun exposure time of 30 minutes per side; front, back, right and left sides. That gives me 2 solid hours a day of direct Heliotherapy. I also get about 4 to 5 hours per day of indirect sun ray exposure. I have not burned once this year because I’ve been pacing my exposure. Since the second to last day of April to now it has been about 60 days. 20 of those days were cloudy. That has given me 40 days of direct Heliotherapy so far this warm season.

We also gain Red to Near Infrared levels of sunlight too. It is said the best times to gain the most infrared is nearer the sunrise and sunset, when the angle of the sun blocks most UVs. Supposedly if your shadow is longer than you are tall, then it is the optimal time to gain Red to Near Infrared and avoid most UVs.

I live on a dead end dirt road in the mountains of Vermont with a completely private yard. I have a sunning deck with full sun exposure for almost seven-eights of the day this time of year. My Heliotherapy exposes every inch of my body to direct sun rays. I strip down, give my thanks to the sun goddess, open myself to her energy and the light, focus on complete relaxation and the absorption of the energy through every pore of my body. It is not only a practical physical healing therapy, but a deeply spiritual one as well. My journey with the sun during my exposure time is very moving.

On another note, sunbathing allows my body to naturally detox through the skin. This is something that seriously lacks when you are forced to spend most of your time in bed!

My wife and I also have this device, the only one of its kind FDA approved, to use year round, but especially during the low to zero UV seasons.

https://www.amazon.com/Alaska-North...words=UVB+Light+Therapy&qid=1655491533&sr=8-5

Since that does not supply Red to Near Infrared ranges of light, we have another light panel specifically for those ranges. This will allow us to get optimal UVs and Red to Near Infrared year round, which will also help our bodies make and maintain optimal levels of Vitamin D/D3 all year.

I get my vitamin d levels checked again on July 8th. It will be interesting to see what they are.

I feel strongly that there are other deeply powerful medicines contained in the light and energy of the sun that no lamp could ever produce. Those will be missed in the season of ice, but perhaps the sunlight and Red to Near Infrared lamps will work to assist the body continue to heal throughout the year.

One last thing about laying in the sun for that much time per day.

“Clinical studies have proven that 2 hours of nature sounds in a single day reduces damaging stress hormones up to 800% and activates between 500-600 DNA segments responsible for repairing and healing the physical body.” Dr. Joe Dispenza

Sunning here in the mountains isn’t just a journey with the sun, but also a healing practice through sound.
 

Johannes

Senior Member
Messages
312
It is time to put my theory a test. I have rented an appartment from Malaga area (Spain) for December through March. My wife and our dog will accompany me. Last winter UV-index there was around 4 during the warmest hours of a day. I have experieced that 3 is enough to help me. I hope I feel better over there. I should have booked the appartment already starting September, because I have many times started to feel quite sick at the end of September. I couldn't get one. It is unbelievable difficult to get a dog friendly appartment from Costa del Sol. And right now, so many People are looking an appartment from there. More people than usually. But me feeling better depends on off the year. Two years ago I felt quite OK in December. The time will tell...and I will also...in here.
 
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Messages
97
Thanks @Nord Wolf and @Johannes for sharing.

I'd love the chance to move to a warmer climate during the colder months just to see if it "blows away" that persistent, groggy fatigue feeling... maybe one year.

In Canberra (Aus) we get a UV low of 2 in winter and (I believe we sometimes get as high as) 15 in summer.

Winters are hard for me. I start feeling the effects from May through to December and to-date I haven't been able to develop a sustainable technique/method to get me through the colder months.

I'm able to build up to approx. 45mins, lying in the midday sun (during summer) without burning. Doing this reduces the fatigue considerably, but I only get this effect from January to late April.

I've also been taking Nascent Iodine for some time now. The jury's still out on the effectiveness and it may end up being part of the bigger picture rather than the 'silver bullet'. At the very least, it helped me get off the Modafinil, which (after roughly a decade on) it stopped working and was starting to cause crashes.
 

gregh286

Senior Member
Messages
975
Location
Londonderry, Northern Ireland.
It is time to put my theory a test. I have rented an appartment from Malaga area (Spain) for December through March. My wife and our dog will accompany me. Last winter UV-index there was around 4 during the warmest hours of a day. I have experieced that 3 is enough to help me. I hope I feel better over there. I should have booked the appartment already starting September, because I have many times started to feel quite sick at the end of September. I couldn't get one. It is unbelievable difficult to get a dog friendly appartment from Costa del Sol. And right now, so many People are looking an appartment from there. More people than usually. But me feeling better depends on off the year. Two years ago I felt quite OK in December. The time will tell...and I will also...in here.

I benefit massively from heat....not necessarily has to be sunshine.
I have a sauna installed at home. It's my saviour.
I believe we have low blood flow to muscles by small arterioles inflammation or gummed up.
When we get hot...they expand and resume blood flow. Also the heat removes lactic way way faster if we can break a sweat.
This has been consistent with me in 10 years.
 

Johannes

Senior Member
Messages
312
I benefit massively from heat....not necessarily has to be sunshine.
I have a sauna installed at home. It's my saviour.
I believe we have low blood flow to muscles by small arterioles inflammation or gummed up.
When we get hot...they expand and resume blood flow. Also the heat removes lactic way way faster if we can break a sweat.
This has been consistent with me in 10 years.

I find sauna helpfull but when I am very tired, I become nausiated after only a few minutes in heat.
 

Wayne

Senior Member
Messages
4,268
Location
Ashland, Oregon
I find sauna helpfull but when I am very tired, I become nausiated after only a few minutes in heat.

Hi @Johannes -- I talked with a chiropractor once who had a clinic with a sauna in it. He originally thought that to get the full benefit of a sauna, you had to have it quite hot, and had to do it for a good amount of time, like 45 minutes or so. He told me he soon learned that that didn't work well for him.

He then discovered that more frequent and lower temperature saunas for about 10 minutes at a time worked so much better. He thought doing these more frequent shorter ones was much easier on the body, and was actually more effective. If I remember correctly, he would do saunas without changing his clothes, as he didn't feel it was necessary for him to break a sweat.
 

Nord Wolf

The Northman
Messages
541
Location
New England
Johannes, excellent news on the winter relocation. Hope you notice a huge difference. I'm going to once again tough it out here for the very long low UV winter season. Our UV had dropped quite a bit already from midsummer. The levels are still good... when it isn't cloudy. On our brightest day right now we are still hitting UV levels of 5. But we have had a LOT of clouds and rain these last few weeks, and I've notice a difference in energy.

However, my healthcare team has discovered another issue beyond ME/CFS that could be/ IS causing serious energy issues. The lungs... we are in the process of getting tests scheduled to get positive confirmation, and I will be talking about this on another thread.
https://forums.phoenixrising.me/threads/has-oxygen-therapy-helped-you.88376/#post-2410950

My wife and I have an infrared sauna that helps her tremendously. But for me, like Wayne said, I need to use it on very low settings because heat beyond a few minutes causes my body to crash, and drastically makes my lung condition worse. Sauna can also give me a headache if the heat is too high or I'm in too long. Low setting a few minutes at a time only, for me.
 

Johannes

Senior Member
Messages
312
Johannes, excellent news on the winter relocation. Hope you notice a huge difference. I'm going to once again tough it out here for the very long low UV winter season. Our UV had dropped quite a bit already from midsummer. The levels are still good... when it isn't cloudy. On our brightest day right now we are still hitting UV levels of 5. But we have had a LOT of clouds and rain these last few weeks, and I've notice a difference in energy.

However, my healthcare team has discovered another issue beyond ME/CFS that could be/ IS causing serious energy issues. The lungs... we are in the process of getting tests scheduled to get positive confirmation, and I will be talking about this on another thread.
https://forums.phoenixrising.me/threads/has-oxygen-therapy-helped-you.88376/#post-2410950

My wife and I have an infrared sauna that helps her tremendously. But for me, like Wayne said, I need to use it on very low settings because heat beyond a few minutes causes my body to crash, and drastically makes my lung condition worse. Sauna can also give me a headache if the heat is too high or I'm in too long. Low setting a few minutes at a time only, for me.

Nice to hear from you! As Finns (as you know), most of us have sauna in our department. We do. But it I am unable to go to sauna around February through April because of nausea I get. We use quite low temperatures anyways.

I must try Spain, because if I don't, I am affraid, I will not be able to walk (or perhaps live except bedbound) again.

I have real problems with my muscles. I sprained one of my back muscles just by streching it because I haven't used them. My hips hurt if I sleep on my side, because my buttock muscles are too weak. I got inflammatio in my bursitis, and because of that my doctor injected there cortison. It healed but it is very hard to excersise them because they do not recover from excersise.

My knees are hurting because my muscles are not supporting them enough. I have inflammation in my leg muscles because I use them too much just by walking in forrest hills. And I feel nauciated at the sea, because my neck muscles are not recovering from holding my head straight for only a few hours. I can only sit for a couple of hours without back support, chair or similar. But I am better now than in Aprill 🙂 Sailing helps!

So I need my sunshine in order to get in shape. Tomorrow I will have my cortison injection to my knee, because one of my knee muscles has been inflammated and swollen sins in the middle of June. Just walking too much is enough to cause inflammation. Too much is more than 20 minutes. It started because I started to use my legs after a longer period of time. All this, because I have been bed ridden about 7 to 8 months a year for 10 years. My muscless just aren't used to move anymore.

But I am veryhopefull, because in this summer, like all the others, I have been able to slowly excersise.

Also, like where you live, the sun is not shining here that much any more. Our UV index here is 3 at its best. This year we have had lots of clouds in September. I can get my sunshine only in a couple of days a week. I am a bitt afraid how well I am able to travell.

But here, a picture of one of my hobbies...smoking meat. I eat lots of vegetables but every now and then, in summer we grill. Uploaded from my facebook... Our dog knows what's waiting 🤣
 

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Nord Wolf

The Northman
Messages
541
Location
New England
That sucks. The degradation of the body over such a short time is never pleasant and certainly presents a lot of challenges on all fronts; physical, mental and emotional. 10 years ago I could still climb 14,000 foot mountains. 8 years ago I could still take on ten people in combat. Today I’m on oxygen so I don’t feel like I’m suffocating all the time, get out of breath standing up, have regular spikes of full body inflammation and pain, deal with varying degrees of cognitive issues, etc, etc… And I’m only 51. So I hear you and I feel for your situation. I truly hope Spain is good to you and helps stabilize you enough to begin rebuilding your body.

Did the cortisone help your knee?

Great to hear you remain positive, and like myself, fully expect things to improve! :)

Smoked meat! NOW YOU’RE TALKING! I bet your canine companion there also enjoys your meat smoking hobby. ;)
 

Johannes

Senior Member
Messages
312
@Nord Wolf I am also 51! 👍

"So I hear you and I feel for your situation."

Thanks!

"I truly hope Spain is good to you and helps stabilize you enough to begin rebuilding your body."

Me too. I have contacted some volunteers of that area to ask if they would help me, just in case I won't get better. But I think the sun will really help. If not the whole time, atleast most of the time.

These muscle problems are ofcourse only one side on my problems. No, cortisol didn't help yeat. It usually takes a week or two help. From my experience...

"Smoked meat! NOW YOU’RE TALKING! I bet your canine companion there also enjoys your meat smoking hobby"

Oh he does, for sure! 😆
 
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Johannes

Senior Member
Messages
312
I am starting to feel that I begin to have cognitive problems. It tells me I am getting weaker. And my muscless don't recover as they used to, during Summer. I am a bit worried how I will manage in Spain with our dog the first month without my wife. She is flying to Malaga in the beginning of January. But if the sun helps in a week or two, no probs! I have to believe it will help. But luckily, my health becomes really bad only in February, so I think I will manage for December. It is only January that has the lowest UV radiation index over there. The long 4,5 hour flight plus three hours in a bus worries me too. But i will manage. It is our dogs first time in a dark aeroplanes cargo space too. I hope he will be Ok in there. It seems I also start to feel deppression coming.
 
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Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
I am a bit worried how I will manage in Spain with our dog the first month without my wife. She is flying to Malaga in the beginning of January. But if the sun helps in a week or two, no probs! I have to believe it will help. But luckily, my health becomes really bad only in February, so I think I will manage for December. It is only January that has the lowest UV radiation index over there. The long 4,5 hour flight plus three hours in a bus worries me too. But i will manage. It is our dogs first time in a dark aeroplanes cargo space too. I hope he will be Ok in there. It seems I also start to feel deppression coming.

Saying a prayer that everything with your trip goes well.

I don't know about the airlines there but I do know a non-ME patient here in the states who got some paperwork (I believe from her doctor) stating that her dog was a support dog and then the airlines allowed her to take the dog into the cabin during the flight. Airlines there may have different policies though but maybe something to check into. ??

Also do they have anything like Uber in Spain now? A bus ride after a long flight (for us it is) would worry me too.
 
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Johannes

Senior Member
Messages
312
@Judee : "Saying a prayer that everything with your trip goes well."

Thanks!

"...stating that her dog was a support dog and then the airlines allowed her to take the dog into the cabin during the flight. Airlines there may have different policies though but maybe something to check into. ??"

It would be possible after an approved training and test. We thought that too but we don't have time to train him. Maybe next year.

"Also do they have anything like Uber in Spain now? A bus ride after a long flight (for us it is) would worry me too."

I don't want to use an Uber in a strange land of which language I don't speak. It would be my first time with Uber too. Some People said It would not be the best choice over there. I think I have to take a taxi.
 

Johannes

Senior Member
Messages
312
About two weeks, until I fly to Spain. I feel a bit nervous because I feel I am starting to get worse. How do I survive the travelling, especially in an aeroplane. I am almost bed ridden, because I have to rest in my bed approximately 20 hours per day. I can still do some light home work but I can't drive further than 20 minutes from my home. Travelling takes 11 hours.

I would have to do there my on food, feed the dog, walk with the dog twice aday for atlest 15 minutes each time, go for shopping food (50 meters walk to the market) atleast twice a week, and keep company for our dog during the day, play with him etc. and walk 100 meters to the beach for sunbathing atleast once every three days. All this untill my wife arrives to help me. But if the sun does the trick, I have no problems to do these things.
 

Johannes

Senior Member
Messages
312
The sun does shine here, at the South of Finland, every now and then. But the UV index is now 0.0-0.26 at best. Max day time temperature is 5 degrees Celsius. This photo is taken yesterday at 2PM. In late Autumn, the sun doesn't rise much higher than this. There is sunshine only between 9AM and 4PM.OI000002.jpg

In Malaga, Spain UV index was 3 yesterday, for a couple of hours. The max day time temperature was 21 degrees.
 
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Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
Have you tried possibly to see if there are any travel agencies that could assist you until your wife arrives?

I found this regarding travel mobility (wheel chairs, scooters, etc.) but I wonder if they would know of any agencies that provide caregivers who could assist you with transportation and meals. ?? http://www.mobilityabroad.com/1.html#
 

Johannes

Senior Member
Messages
312
Have you tried possibly to see if there are any travel agencies that could assist you until your wife arrives?

I found this regarding travel mobility (wheel chairs, scooters, etc.) but I wonder if they would know of any agencies that provide caregivers who could assist you with transportation and meals. ?? http://www.mobilityabroad.com/1.html#


I so happened that when I told about my trip to Spain to our neighbours, they got enthusiastic about travelling to Spain. They're a husband and a wife. They fly there a few days earlier than I, without their dog, to the same area of Spain I go. I think they stay approximately 30 kilometers from where I will live. And they promised to pick me up with their car from the air port. They will give me a lift to my new home and help with the dog. Our dog happends to like them, so that makes it easier. I can go shopping food while they watch our dog. And they have lived exactly where I will stay. They even know the street where I will live and Shops over there. This feels like a miracle to me. I am so happy about this, atleast some cells of mine are...because of my depression which is starting to come back, as usual, at this time of the year.