A treatment that helps me tremendously

[Nord Wolf]

@Johannes - been a while since I've chimed in here to your thread. I've been having a brutally rough winter and can only dream of laying in the sun for hours a day right now. How my body could use a solid dose of genuine sunlight. After being hospitalized last month with influenza, my body battery (already painfully low this time of year) is having an impossible time recovering. I know from past experience that only regular sun will help recovery to a less miserable state of being.

I am very happy to hear you have been seeing improvement this winter from previous ones being in Spain. Sounds like it has been a beneficial experiment. It will be interesting to hear how things continue after returning home for the year.

Here we still have 107 cm of snow on the ground, and tonight through Wednesday we are to get another 36 cm. This also has been one of the cloudiest winters I can remember in the last 15. We have been getting only about a day of sun out of 14 since mid autumn.

Well, I can't see again today, so I'm dictating this and my lungs are tired. Enjoy that sun man!!!!!

 

[Johannes]

Ok, now it works! 🌞

Nine days in sunshine. I noticed the effects last thursday, after having been sunbathing some 3 to 4 hours a day for a week. And now I am sure that this is coming from the sun.

My muscles work a lot better. My back mucles are in better shape. I can sit for four hours a day. I have positive feelings. I am less stressed. But my bowel is still quite inflammated after having eaten some foods, that I shouldn't have, with local beer, which makes me a bit tired, but only for the next four days (maybe).

As in previous summers, my memory, ability to concentrate into things, and ability to eat more versatile, will improve later...maybe in a couple of months. Hopefully sooner, because I can't wait to bbq and smoke meat and fish. I am able to walk some 3km per day with the dog and I can cook with my wife again, but that's all I can do right now.

I will fly back to Finland at the end of this month and if there are no clouds, the UV index at our backyard should be minimum 3,0 in two weeks 🙂 But right now there are some 20cm snow at the backyard.

Now I am sure that sunbathing helps me. It seems this will be my best year since I got sick in year 2011. And as we are flying back to Spain in October for a few weeks, the next Winter shouldn't be bad either.

 

[pamojja]

Sadly had to realize this time here, that the last 2 winters without vacation respite due to covid-restrictions really worsend my leg-pains during walks now. Usually improves within 2 weeks of sun-exposure. Sadly, will probably take much longer this time.

Have to report somewhat sad news, though I don't feel at all threatened like at the first diagnosis fourteen years ago. Now my already seven years remission from the walking-disability from PAD has itself gone of vaccation since my India visit and now on back home.

Mentally it was really soothing time, and it wont diminish my gladness. Its Time for searching for the, as allways, multifactoral causes with patience..

Though before with corona winters the pain in the calfs too increased slightly, and last year improved somewhat even with ninehundrets watt infrared lamps for twenty minutes per day only, or walking very slowly after about fourty minutes too..

- now its pain is in the left hip. Not improving with slowly walking at all, but increasing untill additional numbness forcing me to stop. Or consuming about tree to six short breaks on a distance of one kilometer only, sitting down.

One factor, beside the corona winters, might be that other than my former eight vacations there, I decided to test this seven weeks with much less of my really comprehensive supplementation. Since this time I had to wait till the covid-restriction fell, and than had to prepare fast.

If that is the case it will be over soon. Allready three days after my last swim in the arabic sea, I was already sun-bathing at my river at home.

 

[Johannes]

Although I have felt a lot better with more energy here in Spain, I still get tired quite easily. I cleaned the appartment for an hour and almost got PEM. Luckily symptoms were mild and disappeared after resting a couple of hours. I was very tired for the rest of the day. So, it seems that even if the UV index is already 7 at its peak and atleast 3 for more than six hours per day, my body needs weeks to recover from Winter, just like in Finland after a finnish winter.

This is valuable information. Now I can avoin the hottest time of the day with the maximum UV radiation, in order to recuce the risk of skin cancer, because UV index 3 is enough. The more important for me is to be able to sunbath as many hours as possible per day. I think four hours once in two days would be enough for me, to make the difference. Or three hours every day.

 

[Johannes]

Back at home. We have some 20cm snow here and outside temperature is -10 Celcius degrees. UV index is 1.8.

Travelling was terrible. I had had 6 hours sleap. Taxi arrived at 7.30 am. Flight was only 4 hours 10 minutes. But there was so much waiting in the airport (because of check in for our dog and otherwise), and the plane was a bit more than an hour late. Thenm back at Finland 2 hours 45 mins. in a bus. We were home at 10.10 pm. So travelling time was altogether 14h 40mins.!!

I had been able to sit or stand before only some 4 to 5 hours, barely, and now this. Plus all the cleaning I did at the appartment before we left Spain. During one week I cleaned most of the appartment but I wasn't tired. But it was energy used, before travelling.

Flying cause me some sort of nausea, which got worse during the flight. Later, in a bus, without eating for hours, I got somesort of PEM. I didn't want to eat in the plane, because I wanted to use my FFP2/KN95 masks all the time. I did drink water though. I was gonna eat before the bus trip but the plane was late and we had to hurry to the bus.

And as always, when I have really bad fatigue, my bowel inflammates. That ment diahrea which started already at the plane. So I feel weak and dizzy too. But the diahrrea is now gone.

It was easier to fly to Spain. Last summer still had its effects and I happened to get some sunshine when I arrived to Spain. I had rested. I had booked a hotel from the airport of Helsinki, Finland. So I travelled in a bus to Helsinki a day before flight. That was very important. I had an opportunity to rest more. And the waiting time in Helsinki airport was only two hours but according to flight service, in Malaga airport you have to be threre three hours before fligt plus the flight was more than an hour late. Well, we cheated 😉 We were there 2,5 hours before. The check in opened 2 hours before the flight.

This Autumn, when we go back, we have a new travel arrangement. We take a cruise ship from close to us and travel with it to Sweden. It takes 12 hours. We are sleaping on board. It takes half an hour to get from the harbour to the airport. Then we have a bit shorter flight to Spain. But we are not going to go to Costa del Sol, Malaga but to Costa Blanca area, to Alicante airport.

Now I need some three to four days rest until I can function properly again. But today, we will go to our SAUNA!

 

[Johannes]

I rested four days and drove to our boat, which is winterized, worked a sort time, then visited my father and stopped atleast to four shops. It took me some five hours. I was not well rested when I left home. That ment another four days in bed with brainfog, but I am slowly getting better. I drunk a few NATO beers last tuesday (Finland is now a new member of the NATO), which caused some stomach and bowel problems to me making me more tired.

I think I used all the energy I gained, right away in Spain, walking too many kilometers and too many steps to the second floor to our apartment. I was able to finally start sunbathing at the 10th of May. Then I got some 20 days worth of sunshine before I flew back home. Being this sick was quite normal to me in previous years after only 20 days of sunshine. So, now that I realize this, I feel better.

Today was the first sunny and warm enough (+9 degrees) day to lay in a chair in our garden, without a shirt, although the UV index was only 2,3. But It will rise up peaking 3 in approximately ten days. Since I have already been in sunshine, feeling its effects not so long time ago, I will be feeling better in no time. I just have to watch out that I don't do too much home work before that.

 

[Johannes]

Tomorrow UV index will be three (minimum) for half an hour. It is the first time this is happening in year 2023, in Finland. Temperature outside at noon is 10 to 12 degrees Celsius.

I had a pretty bad fatigue after I returned to Finland but now I feel better. My quess is that I caught some sort of virus infection that caused some of my symptoms, and it is still affecting my health. Normally, If I get cold or influenza, or if I get a flew vaccination or tick vaccination, my bowel inflammates for 4 to 6 days. So, I have had pretty bad inflammation as it took two weeks for me to get better. It also affected my tonque and eyes. These symptoms must be part of my MCAS. And the other part, fatigue, I quess, comes from CFS.

Anyway, now that I feel a bit better, I am going to change the tires today. Snow and ice have melted, so no need for winter tires anymore. During the following days the sun should be shining most of the day, so I will be sunbathing quite a lot.

I feel positive again. On the 26th of Aprill I will start to fix our boat. I bought a new ceiling hatch for the forward deck. In addition to that, there are only some minor things to do this Spring. I am happy about that, because this means that I won't be as tired as I have been during the four previous Springs before this, when I have had to work so much in order to get her floating. And hopefully she will be floating earlier too, maybe two weeks earlier. Next Spring there shouldn't be anything to fix at all. But she is an old boat, so you never know.

EDIT 17.4. : UV index should be over 3 on the 18th of April.

 

[Johannes]

It has been unnecessarily cold and cloudy in Finland (+ 5 to +8 degrees). But the situation should change in a week (+15 degrees). UV index is around 4 at its peak. I have been able to sunbath only a couple of days a week.

I have been able to fix the boat two times, 2 hours each time. In earlier years one 2 hours work plus two hours driving made me feel sick for four to five days but this Spring I have recovered in only two to three days And the symptoms are not that bad. So maybe staying in Spain for last Winter still affects.

I have only had PEM two times since last September, even though I have been more active than in years since 2011. I believe his is due to higher vitamin D level in my body and because I was in Spain for last Winter. It has always been hard to separate the benefits of vitamin D injections and UV radiation from each other. I just had my vit D measured. It was 280nmol/l with 208 micrograms of vitamin D a day.

I and my wife finally found us a new home, after six years of searching. It will be ours by the end of the month, but we can move our stuff in as late as around September. We will have there a place for our sail boat for Winters, so no more 55 minutes driving to boat yard 😊. And jetty for the boat is very close: 12 minutes driving only 😀. Plus the jetty is in the middle of archipelago. Earlier It has taken some 30 minutes driving with boat engine away from the harbour before using the sails. Here's a photo of it.

 

[Johannes]

I have been fixing our sailboat, like so many Springs before this. I though that the time spent in Spain would make me feel better earlier this Spring but no. I feel no better nor worse than normally at this time of a year. And I have been sunbathing 3 to 4 hours almost daily for the last two weeks. I don't know yet why I don't feel better but I have been thinking...

Normally, after a good sunny summer, I feel fine until to the end of October. November isn't bad either. I really can do things without fatique until November. But now, like any other Spring, I feel quite tired. It just seems that I did too much in Spain and didn't get enough sunshine there, and didn't get enough sunshine after we got home either, untill now.

I need to learn to slow down when I feel better. No news there! But maybe next Winter is easier for me because we will live in Spain 6 weeks in Autumn and 15 weeks in Spring.

 

[Woodyrob]

@Johannes yes, I have noticed almost from the start that my health is a lot better during a hot dry spell with more energy and fewer viral type symptoms (not sure they are true viruses but I feel like I am fighting something) - though the latter has improved a lot. I have been ill for about 20 years, though at the beginning I put my ill health down to the menopause as it developed slowly and I didn't recognise what was going on for some years until it worsened. By that time I was in my mid 50s, and am now 70 this year. I am not severely affected, and manage to do about 10 hrs per week volunteering over 2 days, but it's mostly sedentary. Physically I am struggling more than a few years ago, and felt that things like mild Covid in 2020 impacted me, as well as the stress of living alone now and having to run a house and garden alone. I have diagnosed underactive thyroid from the age of 44, and managed to get to use a different kind of thyroid medication (T3 monotherapy) which I think helps me, for free at present via our NHS service, but when I move to a new home soon I may be challenged on it, so that's a maybe hurdle to climb.

Unfortunately we moved to a damper climate in the UK right at the start of my illness, which didn't do it much good, though there is sunshine here too in the summer, but often wetness too. My husband died 2 years ago, and I am moving back towards a climate that will probably be a bit drier and with maybe a lot more heat in summer, with the changes in global warming as it's central southern and on the very outskirts of London. However it's a ground floor retirement flat with a door to a garden, so should be comfortable I hope.

I have taken Vit D for many years - maybe 13 or more now, near the start of my diagnosis in 2008. I haven't taken huge doses of it, but had my levels checked a few times and they are always in the good range, but I guess it might be interesting to see how I was if I took more. I must admit to having been a bit scared to do so, as research and opinions vary on this.

I have been interested in near infrared lamps and have done a bit of research but never done anything about them. Once I have moved, I will look some more and maybe take the plunge. Some of the lamps looked very expensive and I was worried about making a costly mistake but I have some sites bookmarked.

I wonder if it’s both sunshine and less mould?

I thought that but eventually realised what was causing my autumn crashes was actually the flu shot.

 

[Woodyrob]

It’s also important to know that it’s not just vitamin D that the sunshine brings, it’s also the prodution of nitric oxide within the blood vessels for smoother flowing blood, as the gas is like microscopic ballbearings lining the blood vessels that help our blood cells, platelets slide along.

Also Co-enzyme 10 is produced by eating green vegetables and then about an hour or so later going outside and sitting in the sunshine. Apparently the chlorophyll converts to Q10 via sun exposure.

How to Regenerate Coenzyme Q10 (CoQ10) Naturally
https://nutritionfacts.org/video/how-to-regenerate-coenzyme-q10-coq10-naturally/

Plus I bet there’s other essential chemical processes happening within the skin when subjected to sunshine

 

[Johannes]

It’s also important to know that it’s not just vitamin D that the sunshine brings, it’s also the prodution of nitric oxide within the blood vessels for smoother flowing blood, as the gas is like microscopic ballbearings lining the blood vessels that help our blood cells, platelets slide along.

Also Co-enzyme 10 is produced by eating green vegetables and then about an hour or so later going outside and sitting in the sunshine. Apparently the chlorophyll converts to Q10 via sun exposure.

How to Regenerate Coenzyme Q10 (CoQ10) Naturally
https://nutritionfacts.org/video/how-to-regenerate-coenzyme-q10-coq10-naturally/

Plus I bet there’s other essential chemical processes happening within the skin when subjected to sunshine

Thanks for your comment!

Yes, there are a few hormones too that are produced due to sunshine, most of them affected by sunlight through our eyes. And infrared light enlargenes our veins too, helping blood vessels to go through them easier and making our blood pressure a bit lower. These things are discussed further somewhere in this thread or on my other thread concerning red and near-infrared light.

I am unable to eat anything green, except leek and cabbage, which are not that green. Nevertheless, sunshine helps me.

 

[Johannes]

It is floating again 😊 but oh boy, it was hard! Only six days fixing the boat in a month. Four to six hours a day including travelling. Now I will rest until to saturday and then we will go sailing with my Friend. Let's see how soon I will get better.

 

[Johannes]

I thought I didn't have to do anything with the boat anymore but to my surprise the engine had sprayed almost half of its oil around engine space. Fixing that took two weeks, because I was so tired about previous fixing of the boat. I also had to wait spare parts for a few days.

I cleaned the blocked breather system (that had caused the oil spill), changed engine oil and oil filter, seals for water pump and a zinc anode inside the engine. Cleaning the engine space was quite a hard job. There was oil everywhere. I had to do it many times, first with turpentine, then with ethanol. And finally with soap and water. Then I took a test drive. Now everything works well. Then I cleaned drinking water tank and water pipes using disinfectant. After carrying in some 300kg worth of utensils, matresses, carpet, curtains, etc. inside we spent our first night at the archipelago. It was fun.

Yesterday was the second day this summer, I felt quite OK. My muscles work well but are weak and my deppression is gone. I can now sit and stand for some three hours a day but during summer my back muscles will get stronger, and then I am able to sit and stand for longer time. I finally feel the full effects of the sun. 🌞

It is warm outside now, some 27 degrees. UV index is 6,5. I burned my lower lip a bit. It is time to start to use my Stetson hat, which makes a good shade to my lips, nose, ears and neck too.

Have a nice Summer!

 

[Johannes]

Well, I am affraid this April and June were full of things to do. I feel quite tired. I haven't been able to sail but four days in June and by tomorrow eight more days. My mucles haven't had the excersise they would have needed at the sea/for the sea. Growing mucles cause fatigue. But my muscles are becoming stronger day by day.

Sailing a whole week is now defenetly too much for me. Last Summer we did three over 7 day trips with our boat. The longest being 14 days. One thing now causing my fatique is my wife's fatigue. She has a sickness causing fatique too. She hasn't been able to help me as much as before with home work.

It is now clearer and clearer to me that because I didn't get enough UV 3 (or above) radiation in Spain, I am too weak now. Weaker than in four years at this time of a year. It is also possible that because I had well rested winters before this, I had felt better. All in all, I have to take it easy this Autumn and Winter. This all makes me sad. Sailing is now causing me symtoms that I normally get in Winter: bowel problems with very restricted diet, cognitive problems including deppression and fatigue. Headache of MCAS.

Let's see what happends in the next few weeks. I have to attend meetings of one block house piping and electricity renovation as a chear man of the block house. Fix a bit our new home, we move there on the 13th of September. We hired a company to move our things, but we have to fill in the boxes with our stuff and empty them in a new home. We have friends helping with moving in and cleaning the homes. But the stress it is causing makes me feel a bit sick.

I'll be back later on to report about all that.

 

[JasonPerth]

Without any vit. D supplementation my vit.D level was measured 28nmol/l (11,2ng/ml) in Spring year 2014. So, very very low!

Me too! Its literally the only test that pops up an alert to the doctor out of the other 999

 

[Judee]

I read the phrase, "Vitamin D/VDR axis" today. I wonder if that is referring to our bodies converting the Vitamin D to it's usable form something I think people with this and similar diseases may have a hard time doing. (I have 21 VDR polymorphisms on my gene report.)

https://pubmed.ncbi.nlm.nih.gov/35595176/

 

[Johannes]

I read the phrase, "Vitamin D/VDR axis" today. I wonder if that is referring to our bodies converting the Vitamin D to it's usable form something I think people with this and similar diseases may have a hard time doing. (I have 21 VDR polymorphisms on my gene report.)

https://pubmed.ncbi.nlm.nih.gov/35595176/

Yes, vitamin D/VDR axis refers to conversion process of non-active vitamin D, with the help of vitamin D binding protein (VDBP) to active form of vitamin D to its primary target, vitamin D receptor (VDR). I didn't have vit D in my gene test. It would be interesting to know what gene mutations I'dd have there. But it seems clear, according to my doctor, that I have problems in that process. BTW, there are more than 121 genes involving vitamin D, and not all of their functions are known. If I may ask, what gene test you had?

 

[Judee]

If I may ask, what gene test you had?

I did 23andme (the medical version rather than the less expensive historical version) and then uploaded the raw data to this site:
https://mthfrsupport.com/sterlings-app/

At the time I think to subscribe to the app service was $30 and then that generated a gene report that I saved to my computer.

 

[Judee]

generated a gene report that I saved to my computer.

I posted the print screens here if you want to see what the report looks like. This was just 2 pages from it showing mostly VDR genes though. https://forums.phoenixrising.me/threads/cyp2r1-snp-and-low-vitamin-d.90486/