A treatment that helps me tremendously

[Johannes]

I have been walking normally some 2,5 to 3km per day. I have to watch out that I don't wear my self out, because I have been a bit tired, so I am going to walk 2km maximum per day. Plus I have to do some muscle exersizes.

There has been two shopping days, when I have been walking 11 000 to 12 000 steps per day After such an excersize I have needed two days rest walking only 1 to 2 km.

So sunshine benefits me greatly. But now I have to find a balance between walking and resting. I can walk 3 km easily without fatique but it causes me problems such as absent of happy feelings. And if I walk 5km I can't sleep well and my bowel doesn't tolerate as many foods as it does when I am well rested. Also, I would have to find me a hobby other than drinking beer. For that, I would need to walk less. I just haven't found good hobbies yet. Reading is a bit hard, because I have problems to concentrate when I am tired.

I left my Olympus camera home as well, as my electronic piano and my saxophone, which are my hobbies back at home. I like to Cook too, so that's the only thing I now can think of to do.

Right now it is cloudy. UV index is dropping below 4. It should be over three tough, trough out the whole November.

Here are two photos. One is taken from a community pool and another from our terrace.

 

[Long Haul Mono]

@Johannes, I'm finding your updates very interesting as I've experienced similar.

I just got back from Queensland (QLD) where I basically 'lifted and shifted' my life up there for 2 weeks to see how my symptoms may react while doing my normal daily work activities. I was fortunate to have work agree for me to work there remotely. I had to drive. It was a long long drive.

Long story short, it was a mixed bag of results. I was able to walk more, part of which was along the beach that was across the road from where I was staying. The weather was mild-to-warm with a UV index maxing out at about 9.

I have been walking normally some 2,5 to 3km per day. I have to watch out that I don't wear my self out, because I have been a bit tired, so I am going to walk 2km maximum per day. Plus I have to do some muscle exersizes.

This is what I think I came up against. I got more motivated and felt like doing stuff and going places. A stark contrast to my life here in Canberra. Winters are hard for me but not as brutal as yours from what I've understood. UV drops to a min of 2.
The fatigue never really went away but seemed to gradually decrease as I came to the end of the 2 weeks.

... I can't sleep well and my bowel doesn't tolerate as many foods as it does when I am well rested. Also, I would have to find me a hobby other than drinking beer.

I get similar. Bowel function is the first to become compromised when I'm overly tired and/or been exposed to winter or cold weather too long.
... beer. I recall that! No carbs for me anymore. I just can't handle them. Massive GI tract bloat followed by a crash.

While in QLD I came across a legal marijuana dispensary and got myself some 20% THC "green" to dry vape. Really really good to get you to sleep.

Having returned from QLD I basically feeling like sh!t. Groggy, tired, nothing is keeping me awake and night time sleep is fractured again.

I expected I'd be tired when I got back as QLD to Canberra is over 1000km to drive. I still don't know how. I don't recall much of the trip up or back.

Anyway, sorry for the long post, that is...

Reading is a bit hard, because I have problems to concentrate when I am tired.

...me too.

This was my view for 2 weeks, which was kind of hard to leave.

 

[Johannes]

I did it again. Like last December in Spain, I did too much. My wife hurt her ankle, so I have had to walk the dog three times a day, instead of two. I am trying to find out how long walks I can do. It seams that 0,7km is good maximum two times a day, right now.

I vacuumed and wet swiped the downs stairs floors and the patio, which I did also last week. And I participated 1hour 45min. Teams meeting concerning te renovation of a block house. That was too much. I feel lousy. This is some sort of mild PEM. Like before, I can tolerate more physical excersise than mental. But it may also be that I feel better appr. 6 to 10 days after my vit.D3 injection. Today is 12 days from the last one and I am supposed to get one from a local nurse today, so maybe I feel lousy also because so many days has gone since the last injection.

My plan is not to clean the floors every week and walk less. In Spain, at this time of year the wind caries sand from Sahara. Also my dog started his hair loss. That is why I have cleaned the tiled patio too. Maybe I can do something less intensive to clean that.

I am waiting for my new electrical training saxophone to arrive any minute now. I can try to learn to play sax with earphones on silently. Let's see how tired I become and if I learn anything. It is a bit hard to concentrate right now. Maybe it is easier tomorrow as I injected methylcobalamin today.

 

[Judee]

Please try to rest more so your body can use the sun therapy to heal as much as possible.

 

[Long Haul Mono]

On the topic of treatments that helped, has anyone tried Low Dose Aripiprazole?

I did a quick search on this web site and found mixed opinions. Seems promising but anything relating to an antidepressant is a bit of a turn off for me.

 

[Judee]

On the topic of treatments that helped, has anyone tried Low Dose Aripiprazole?

You may be interested in some of the threads that are better focused on that topic:

https://forums.phoenixrising.me/threads/abilify-stanford-clinic-patients.62807/

https://forums.phoenixrising.me/threads/abilify-tolerance.82726/

https://forums.phoenixrising.me/threads/poll-low-dose-abilify.83276/

There is also a FB group dedicated just to Abilify for pw/MECFS. It's a very big and active group so they might be able to discuss your concerns with you.

 

[Johannes]

Please try to rest more so your body can use the sun therapy to heal as much as possible.

You are so right!

Today a couple from Finland visited us. It was so nice to spend time with them. Just sit down an talk and laugh. Our dogs are friends.

It is even more clear now, that I need to save my energy. If I do too much, I also have problems next Spring, as I would't have had rested enough during winter.

 

[Sarouna70]

I will tell you about a treatment that has helped me getting from 30% up to 50% or more. Without it I am bedbound 22 to 23 hours a day and unable to do homework. But I can wash myself and sometimes cook. I can also barely walk with my dog twice a day for ten minutes.

Because of this treatment I can do all my home work (cleaning, dish washing, cooking, washing my self and clothes and more). I can see my friends every now and then. I can even sail with our sail boat with my wife, but that is sometimes a bit too much. I do get tired at the sea. I can also do light gardening. But I can't work, not even half time. I also have to rest couple of days, maybe once a week or once in two weeks. Also, my PEM almost disappears with this treatment. I rarely get PEM, maybe once in two months. I don't have brain fog and my brain work a lot better.

Before I tell you what the treatment is... I have talked about this treatment in CFS facebook groups and other CFS groups and found that there are others who have also noticed similar improvement with their energy levels and brain functions, etc. I have encountered three CFS patients, that have told me they have clearly benefitted from this treatment. One of them being Emelia Shannon from UK, who tells it being one of the treatment she uses, that really help. Here is her video about her treatments:

Some have tried this treatment and it hasn't worked for some.

So what is it then that helps me? The answer is: Sunshine!!! It may be hard to believe that sunshine would help, but my doctor tells me that many of his patients have moved from Finland to sunny coast of Spain and they really have benefitted from it. Their quality of life has improved a lot. Emelia Shannon from UK is one of those that has got her help from sunshine.

According to medical studies, infrared and near infrared wave lenght (sunshine contains them), provide energy in a cellular level. I live in Finland, where the sun is not shining between November and February. And even in October and Aprill, it does not provide enough energy to my sells. People here, can't get tanning at the end of September until in the beginning of April.

I know, many CFS patients say that they feel terrible if they try to be in sunshine. So did I. I noticed this in year 2012, when I got my CFS. But I also noticed in 2014 something else. I felt better in Summer. Next year I tried to spent as much of my time in sunshine as I could and felt ever better. But it was year 2017, when I moved to an area, where there was a lot of sunshine. I felt notisably better.

I did a test in year 2019. At first, in the beginning of April, I could barely lay in my matress in sunshine about five minutes and that caused me nausea, which took several hours to go away. But the more time I was in the sunshine, the more I could be there without nausea and other symptoms. I was in sunshine almost daily and after one month I could stay there an hour with out any problems. It was not pleasent at first and I do not recommend anyone to do something that makes them feel worse. But that is what I did.

After two months I started to notice that I have more energy, I can do more things. By that time I stayed several hours in sunshine almost every day. I lived in my sail boat in July and August and got even more sunshine, because in addition to sunshine that I got directly from the sun, water around the boat reflected it to me.

After having spent three months in sunshine almost daily, I was feeling as well as I discribed in the beginning of my story. I could also tolerate more heat from the sun. But not high heat.

This has happened to me year after year. l also noticed that high dose vitamin D helps me even more together with sunshine. Symptoms like depression and headache mostly disappeared. I have also MCAS and most of my MCAS symptoms disappeared with high dose vitamin D3.

What is it in sunshine that helps? I did a test. At the end of September, a couple of years ago, when I was starting to be bed bound again with terrible CFS symptoms, I flew to Malaga, Spain. It took only two days laying a couple of hours daily in sunshine, and I was back to my best summer wellness. I noticed that the sun was up exactly the same hours in a minute, in Finland and in Spain. But in Finland the weather was cloudy all the time. In Malaga, the sun was shining all the time. UV index was 0 in Finland when I left but in Malaga it was 3 during the week I stayed there. So the reason must be the sunshine itself, not the lenght of the day time.

I tried to build a sunshine unit that would provide me everything that sunshine provides me. I bought red and near-infrared LED panel, a big one. I bought infrared lamp. I bought blue and green light LED panel. I bought UVA and narrow band UVB light treatment unit. I bought bright light unit for seasonal affective disorder but I did not have SAD. I did tests for two years with differed combinations of light. None of these caused the same effect that the sun. But I noticed one very important thing...

Red and near-infrared LED panel had one effect that the sun had. I started to use my red and NIR panel in the beginning of February in 2020. At first two minutes a day, because it caused me nausea just like the sunshine but less of it. With LED unit and a timer, it was easier to control the amount of light and nausea it caused.

Later, in March I could spent 10 minutes twice daily in front of my red and NIR light. And when it was time to go outside to sunshine in the beginning of Aprill, I didn't have any nausea. I could stay in sunshine for an hour without any problems. But after an hour, I started to feel nausea.

Another benefit of the LED unit was, that I started to feel better approximately two weeks earlier than on any other previous Summers. This helped me be longer time in sunshine. That was summer 2020.

You can read from my light therapy experiments here:
https://forums.phoenixrising.me/threads/red-and-near-infrared-light-therapy-leds.79181/

And after being longer times in sunhine the whole Summer, I felt better in autumn. Earlier my symptoms had started to get worse in September and I was almost bedbound at the end of September but because I stayed so much in sunshine, my symptoms now started two months later!! And I was never before able to sail since year 2012. I could sail again!

In year 2021 I had to be inside, doing light renovation of my home appr. for one month. That meant literally 30 days without sunshine, weekends excluded. My symptoms started last year at the end of October. So, one month less without symptoms than in year 2020. The more sunshine, the longer I felt better. The time I used for renovation, I was quite exhausted and getting better took a couple of weeks.

I am planning to move to Spain for winters.

How about you, do you feel better in summers? Are winters the worst? Have you ever tried to be in sunshine despite of discomfort? For how long? Did you notice improvement with your

I will tell you about a treatment that has helped me getting from 30% up to 50% or more. Without it I am bedbound 22 to 23 hours a day and unable to do homework. But I can wash myself and sometimes cook. I can also barely walk with my dog twice a day for ten minutes.

Because of this treatment I can do all my home work (cleaning, dish washing, cooking, washing my self and clothes and more). I can see my friends every now and then. I can even sail with our sail boat with my wife, but that is sometimes a bit too much. I do get tired at the sea. I can also do light gardening. But I can't work, not even half time. I also have to rest couple of days, maybe once a week or once in two weeks. Also, my PEM almost disappears with this treatment. I rarely get PEM, maybe once in two months. I don't have brain fog and my brain work a lot better.

Before I tell you what the treatment is... I have talked about this treatment in CFS facebook groups and other CFS groups and found that there are others who have also noticed similar improvement with their energy levels and brain functions, etc. I have encountered three CFS patients, that have told me they have clearly benefitted from this treatment. One of them being Emelia Shannon from UK, who tells it being one of the treatment she uses, that really help. Here is her video about her treatments:

Some have tried this treatment and it hasn't worked for some.

So what is it then that helps me? The answer is: Sunshine!!! It may be hard to believe that sunshine would help, but my doctor tells me that many of his patients have moved from Finland to sunny coast of Spain and they really have benefitted from it. Their quality of life has improved a lot. Emelia Shannon from UK is one of those that has got her help from sunshine.

According to medical studies, infrared and near infrared wave lenght (sunshine contains them), provide energy in a cellular level. I live in Finland, where the sun is not shining between November and February. And even in October and Aprill, it does not provide enough energy to my sells. People here, can't get tanning at the end of September until in the beginning of April.

I know, many CFS patients say that they feel terrible if they try to be in sunshine. So did I. I noticed this in year 2012, when I got my CFS. But I also noticed in 2014 something else. I felt better in Summer. Next year I tried to spent as much of my time in sunshine as I could and felt ever better. But it was year 2017, when I moved to an area, where there was a lot of sunshine. I felt notisably better.

I did a test in year 2019. At first, in the beginning of April, I could barely lay in my matress in sunshine about five minutes and that caused me nausea, which took several hours to go away. But the more time I was in the sunshine, the more I could be there without nausea and other symptoms. I was in sunshine almost daily and after one month I could stay there an hour with out any problems. It was not pleasent at first and I do not recommend anyone to do something that makes them feel worse. But that is what I did.

After two months I started to notice that I have more energy, I can do more things. By that time I stayed several hours in sunshine almost every day. I lived in my sail boat in July and August and got even more sunshine, because in addition to sunshine that I got directly from the sun, water around the boat reflected it to me.

After having spent three months in sunshine almost daily, I was feeling as well as I discribed in the beginning of my story. I could also tolerate more heat from the sun. But not high heat.

This has happened to me year after year. l also noticed that high dose vitamin D helps me even more together with sunshine. Symptoms like depression and headache mostly disappeared. I have also MCAS and most of my MCAS symptoms disappeared with high dose vitamin D3.

What is it in sunshine that helps? I did a test. At the end of September, a couple of years ago, when I was starting to be bed bound again with terrible CFS symptoms, I flew to Malaga, Spain. It took only two days laying a couple of hours daily in sunshine, and I was back to my best summer wellness. I noticed that the sun was up exactly the same hours in a minute, in Finland and in Spain. But in Finland the weather was cloudy all the time. In Malaga, the sun was shining all the time. UV index was 0 in Finland when I left but in Malaga it was 3 during the week I stayed there. So the reason must be the sunshine itself, not the lenght of the day time.

I tried to build a sunshine unit that would provide me everything that sunshine provides me. I bought red and near-infrared LED panel, a big one. I bought infrared lamp. I bought blue and green light LED panel. I bought UVA and narrow band UVB light treatment unit. I bought bright light unit for seasonal affective disorder but I did not have SAD. I did tests for two years with differed combinations of light. None of these caused the same effect that the sun. But I noticed one very important thing...

Red and near-infrared LED panel had one effect that the sun had. I started to use my red and NIR panel in the beginning of February in 2020. At first two minutes a day, because it caused me nausea just like the sunshine but less of it. With LED unit and a timer, it was easier to control the amount of light and nausea it caused.

Later, in March I could spent 10 minutes twice daily in front of my red and NIR light. And when it was time to go outside to sunshine in the beginning of Aprill, I didn't have any nausea. I could stay in sunshine for an hour without any problems. But after an hour, I started to feel nausea.

Another benefit of the LED unit was, that I started to feel better approximately two weeks earlier than on any other previous Summers. This helped me be longer time in sunshine. That was summer 2020.

You can read from my light therapy experiments here:
https://forums.phoenixrising.me/threads/red-and-near-infrared-light-therapy-leds.79181/

And after being longer times in sunhine the whole Summer, I felt better in autumn. Earlier my symptoms had started to get worse in September and I was almost bedbound at the end of September but because I stayed so much in sunshine, my symptoms now started two months later!! And I was never before able to sail since year 2012. I could sail again!

In year 2021 I had to be inside, doing light renovation of my home appr. for one month. That meant literally 30 days without sunshine, weekends excluded. My symptoms started last year at the end of October. So, one month less without symptoms than in year 2020. The more sunshine, the longer I felt better. The time I used for renovation, I was quite exhausted and getting better took a couple of weeks.

I am planning to move to Spain for winters.

How about you, do you feel better in summers? Are winters the worst? Have you ever tried to be in sunshine despite of discomfort? For how long? Did you notice improvement with your health?

It is the same for me, best health with sun and vitamine D but not too long (30/40 mn a day).
But I like cold weather for the day long, not too cold, just average.
I wish you energy and hope.

 

[Johannes]

I am starting to feel more of the effects of sunshine. My bowel tolerates more versatile diet I can sleep without methylcobalamine injections. I am more energetic and my depression is going away. And I can walk more than before, maybe a kilometer more a day than before. I walk some 3km per day now.

But my brain is not recovering as fast as I was hoping for I am having problems to learn how to play saxophone. I hope my health will improve even more during the next there weeks+ we are here.

It will be interesting to see how long I will be feeling fine after we return to Finland. It depends on for how long the UV index will be above 3 here in Costa Blanca, Spain. I would like to recommend you, who know that sunshine will help you, to try to move to South of Spain or to similar areas of the world, if possible (I know that not all have wealth to do this. I wouldn't if my wife wouldn't support us for this, if we didn't do it together, living otherwise on low budget).

I was so depressed before I found how sunshine helps me, that I wanted to die. I have no such thoughts anymore

 

[Johannes]

It is the same for me, best health with sun and vitamine D but not too long (30/40 mn a day).
But I like cold weather for the day long, not too cold, just average.
I wish you energy and hope.

I like cold weather too, we both do with my wife. Just not the long darkness of finnish winters, and not having enough sunshine. We like the yellow and red leafs of the trees in Autumn. The rain and the snow. But we don't like the mud, the slush and the cold wind. I miss cozy dark nights burning wood in a fireplace of our living room. Having sauna and sitting outside terace after it. Well...that's what we'll get in a month when spenting Christmas and New Year at home, in Finland.

 

[Johannes]

UV index is beginning to drop below 3. Actually it has been below 3 now for four days but there will be some days ahead, when it rises back up to 3. I have been feeling good but I suffer from the situation, where I haven't found any restaurant that would make food that I could eat. I get inflammation to my bowel if I eat there. Everything must be prepared at home. Cooking makes me a but tired because I haven't reduced my walking. I still walk some 4000 steps a day (which is supposed to be 2,8km). I should walk less but it is boring at home, so we meet people at the bar nearby. I also have to walk to supermarket a couple of times a week but they are on opposite side of the road, the bar and the supermarket.

We leave to Finland on the 28th of November and will come back on the 3rd of February. It will be interesting to see how well I am when we return back, and how long does it take to start to feel beter again.

 

[Long Haul Mono]

... I haven't found any restaurant that would make food that I could eat. I get inflammation to my bowel if I eat there. Everything must be prepared at home...

Likewise. It makes travel or an extended outing on any day a bit cumbersome, ie having to take food with you knowing there's virtually nothing you can eat when you're out and about.
Have you noticed it's anything specific that causes the reaction? For me it's carbohydrates.

We leave to Finland on the 28th of November and will come back on the 3rd of February. It will be interesting to see how well I am when we return back, and how long does it take to start to feel beter again.

I'm looking forward to reading about how you go on your return. From what I've read in this forum, it seems the warmer temperatures have a profound effect on reducing symptoms. Not sure why.

We had our first 30℃ (approx. 86℉) day yesterday. I was lying under the sun for almost 2 hrs (UV was approx. 9). Last night I slept better than I have for some time. I'm still a bit tired this morning but feeling better.

Summer's coming, so I'll see how it all goes, but it's also great to contrast with others' similar experience.

 

[Johannes]

Have you noticed it's anything specific that causes the reaction?

Yes I have. The more salicylates or amines (such as histamine) or artificial additives the food have, the more I get symptoms. I am on RPAH elimination diet, also called Failsafe diet. There are hundreds of foods I can't eat. For example, no berries or fruits for me, except pears.

The temperature doesn't affect my symptoms. Only sunshine, when UV index is more than 3.

 

[Johannes]

Now I have started to feel as good as I normally feel at Summer! This is great! The only thing that still hasn't improved is my brain. My brain work better than a month ago but not as well as in August when I have usually been at my best health. But this is normal. My brain improves always the last.

So, I got my last sunshine in Finland around the beginning of September. UV index dropped below 3 on the 14th of September. I arrived Spain on the 16th of October. So approximately six weeks without UV 3 and then appr. 4 weeks to get bact to normal. But I was never as bad condition as I used to be for example around year 2017, when I was feeling terrible already at the en of September. So bad that I almost couldn't have travelled to Spain for one week. Now sunshine started to help immediately when I arrived here, affecting positively on my mood and bowel, then later on my muscles and energy level, and now even my brain.

We desided to travel to Spain one week earlier next year and I will get more sunshine at our yard in Finland because we will cut 11 trees that are blocking the sunshine. We already got a permission to do that, from the city.

 

[Johannes]

I have been trying to fit myself into different CFS profiles, to see how much better I am compared to the time, when I didn't know that sunshine helps me feel better. There seems to be many different ratings or scales for the severity on CFS. According to some, I am right now 50% and according to other 60%, even closer to 75%. But my symptoms aren't really the same as what are mentioned in those ratings.

For example, right now I can see friends hours a day. I can walk some 3km a day with the dog without getting fatigue. And I don't have to lay in a bed or sofa at all during day time, except when my back muscles are hurting because they are a bit weak. I can cook 3 to 4 times a week and make my on breakfast and snacks daily. I am using the internet some 3 to 4 hours a day. And excercising with elastic band or doing my muscles otherwise almost daily (just light exercises). Although, excercises can easily cause fatique if I am not carefull. But I have problems if I do more than described here. And using my brain for design and planning causes fatique quite easily. I defenetly could not work, not even part time.

I might be doing a bit too much, because I have problems with my feelings. I rarely feel lots of positive feelings such as love and happyness, but sometimes I do. I have been so excited about the fact that I can do again, that I think I have done too much. Usually, when I am tired, I don't feel positive feelings so much. But the thing is, I don't feel tired. Maybe I am overdriving... or maybe alcohol messes up with my feelings/hormones. I've been drinking lately a bit too much, because you see new people at the terrace.

It seems that because the symptoms of CFS vary so much from people to people, there aren't good severity scales that would fit us all.

 

[Long Haul Mono]

I have been trying to fit myself into different CFS profiles, to see how much better I am compared to the time, when I didn't know that sunshine helps me feel better.

There seems to be more to it than just sunshine. During winter we see a minimum UV index of 2, but exposure does little-to-nothing. I tried infra-red saunas this past winter and they blew the symptoms way, only to return about an hour or two later.

There seems to be many different ratings or scales for the severity on CFS. According to some, I am right now 50% and according to other 60%, even closer to 75%. But my symptoms aren't really the same as what are mentioned in those ratings.

Needless to say, ME/CFS is unique to each person. This seems to include post-COVID and "vaccine" injured people. I'm not classifying the latter two as having ME/CFS as I'm not a GP/specialist, but the remarks I've read in this forum show very differing symptoms/tolerances.

For example, right now I can see friends hours a day. I can walk some 3km a day with the dog without getting fatigue. And I don't have to lay in a bed or sofa at all during day time, except when my back muscles are hurting because they are a bit weak. I can cook 3 to 4 times a week and make my on breakfast and snacks daily. I am using the internet some 3 to 4 hours a day.

I can't really do any of that, and according to the diagnostic criteria, I have 'mild' ME. I have trouble concentrating on anything for longer than 1/2hr (1 hr tops). Walking is limited to about 15mins. Riding a bike for 1/2hr usually ends with a fatigue crash.

And excercising with elastic band or doing my muscles otherwise almost daily (just light exercises). Although, excercises can easily cause fatique if I am not carefull. But I have problems if I do more than described here. And using my brain for design and planning causes fatique quite easily. I defenetly could not work, not even part time.

I have found I have to exercise, although some days it's near-impossible. I have a basic set of gym equipment and notice that if I don't use it for a while the muscle cramps/spasms slowly return.
I had a physiotherapist say it's due to inflammatory enzymes (or markers?... sorry I can't recall his exact words here) work their way in to muscles and tendons. Using resistance training is like wringing out a wet sponge, or in this case 'wringing out' the inflammation. I'm not sure how accurate that is, but rest and regular weights has kept me from having to take strong pain meds again.

I might be doing a bit too much, because I have problems with my feelings. I rarely feel lots of positive feelings such as love and happyness, but sometimes I do. I have been so excited about the fact that I can do again, that I think I have done too much. Usually, when I am tired, I don't feel positive feelings so much. But the thing is, I don't feel tired. Maybe I am overdriving... or maybe alcohol messes up with my feelings/hormones. I've been drinking lately a bit too much, because you see new people at the terrace.

I think dopamine may play a part in that. I've heard dopamine is almost completely shut off in your body's attempt to stop you from dong anything because there is precious little energy for life-supporting demands like keeping the heart pumping. Low dopamine = feeling like sh!t.

Like I said before, symptoms are different for each person, and I cannot drink any alcohol anymore. I'd get sick before feeling tipsy. No carbs, no chocolate, no beer, none of the things that make life that little bit more enjoyable.

I'd love to know why my body went anti-carb to such an extreme that I can only have a keto diet now. It seems the only thing about ME that's really severe is the lack of research and government interest to find a cure. I don't think I'll ever find out.

 

[Johannes]

"There seems to be more to it than just sunshine. During winter we see a minimum UV index of 2, but exposure does little-to-nothing."


Yes, that's why this thread exists: UV index above 3. For one, human body synthesizes vitamin D only when UVI is above 3. But who knows what other things sunshine does above UVI 3...

In Finland UVB is available from sunshine only between 10am to 5 pm. Most of it comes between 11am and 4pm and it peaks 1:20pm (summer time). Although, if UVI is higher, UVB is available stronger also a bit earlier and a bit later.

I have done my experiments being in sunshine approximately 3 to 4 hours a day, as close to 1:20pm as possible. At those times UVI has been between 3 and 4. But when the UVI goes to 5, I avoid being in sunshine around 1:20pm. I always check from a local (closest) weather station how high UVI is. Don't want to get skin cancer. For the last four years, we have been living in archipelago June, July and August, so I get sunshine most of the day. In Finland you almost never get higher than UVI 6, and even 6 is quite rear.


"I can't really do any of that, and according to the diagnostic criteria, I have 'mild' ME"

That is interesting. I didn't want CSF diagnose, because if another doctor sees it, it makes things complicated, because they don't actually know what it means to have CFS. But my private doctor said I have it. So, because I am not officially diagnosed I don't know if mine is mild or something else.


"I'd love to know why my body went anti-carb to such an extreme that I can only have a keto diet now."

I noticed just a year ago, that I feel better if I eat more protein than I used to, on every meal and snacks.

 

[Long Haul Mono]

I noticed just a year ago, that I feel better if I eat more protein than I used to, on every meal and snacks.

This is interesting. I wonder how many others are finding a keto-like diet helps, particularly with digestion issues that (in my case) cause huge GI tract problems.

I seemed to have stumbled down a rabbit hole regarding B vitamins, having been pleasantly surprised at an unexpected effect of B6 (Pyridoxine). I've only just started but just taking 1 a day has really reduced the overwhelming fatigue. I'm not sure how long this may last but I'll see how I go.

A funny thing to point out is the labeling on the B6 bottle, in particular who it is seemingly marketed to.

...Relieve premenstrual tension symptoms such as; breast tenderness...

I'm male, but maybe my whole problem is that I'm menopausal?

I also came across an old thread relating to sleep issues and using niacin (B3), particularly before bed (as the link provided explains). A quick web search suggests nicotinamide is a better form of B3, so I think I'll start from there. Sleep has been a big problem, particularly nocturia.

I'm also considering 'phasing in' B5, but am weary of turning myself into a B vitamin 'pill shovel', ie add them in one by one, understand the expected effects/side-effects and evaluate personal outcomes.
So far so good with B6.

One interesting point I found looking at B3 and B5 is that both have similar claims:

Essential to the metabolism of carbohydrates, proteins and fats

I wonder if this may be the (or one of the) possible missing things preventing me from being able to handle carbs?

I'll see how I go as the self-experimentation continues.
Wish me luck.

 

[Johannes]

This is interesting. I wonder how many others are finding a keto-like diet helps, particularly with digestion issues that (in my case) cause huge GI tract problems.

I seemed to have stumbled down a rabbit hole regarding B vitamins, having been pleasantly surprised at an unexpected effect of B6 (Pyridoxine). I've only just started but just taking 1 a day has really reduced the overwhelming fatigue. I'm not sure how long this may last but I'll see how I go.

A funny thing to point out is the labeling on the B6 bottle, in particular who it is seemingly marketed to.

I'm male, but maybe my whole problem is that I'm menopausal?

I also came across an old thread relating to sleep issues and using niacin (B3), particularly before bed (as the link provided explains). A quick web search suggests nicotinamide is a better form of B3, so I think I'll start from there. Sleep has been a big problem, particularly nocturia.

I'm also considering 'phasing in' B5, but am weary of turning myself into a B vitamin 'pill shovel', ie add them in one by one, understand the expected effects/side-effects and evaluate personal outcomes.
So far so good with B6.

One interesting point I found looking at B3 and B5 is that both have similar claims:

I wonder if this may be the (or one of the) possible missing things preventing me from being able to handle carbs?

I'll see how I go as the self-experimentation continues.
Wish me luck.

B vitamin are such vitamins that if you use one of them, it affects the other. If you take B6, also the level of B2 rises, if I remember this causal effet right. When I started to inject B12, my B6 level got higher. I had them measured. It may be possible to improve all B vitamins by just taking multi B vitamin supplements for three months. This was noticed in a study, when people, who had had too low vitamin D level were boosted with B vitamins for three months. People with low vit D for months tend to have lower B vitamin levels. The vit B levels rose up permanently. These scientist measured B vitamins from the test subjects bowel, and found them low. More than 70% of B vitamins are produced in our bowel by the bacteria. If for example vit B4 producing bacteria don't have enough vit D, they'll deminish. They are producing nutrients for other B vitamins so it causes a chain reaktion where the amount of other B vitamins deminishes. I may remember wrong which vit B rises which vit B levels.

Dr Sarah Myhill who is a CFS doctor, recommends KETO diet to CFS patients. You can fing her videos from you tube.

 

[Johannes]

First symptoms.

UVI 3 was available in Spain to the 15th of November. The sun was shining all the time after that and I surely spent my time in sunshine as much as I could, but UVI 3 was not available after that except some half an hour in three days. I felt it too after one week. I didn't feel so happy anymore. I didn't feel like doing muscle exercises or walking with the dog.

But now, almost three weeks without UVI 3, my muscles barely recover. I feel tired. Why? I still walk a lot and cook and organize my home after moving before flying to Spain. That's too much. I now require much more time to do things. I still have to drive an hour to the city and another hour back once a week, until Christmas. And I begun to have over driven libido, as I have described in another thread. I don't feel depressed. I sleep well and I can still eat versatile diet.

But as this is familiar to me, I don't worry too much. I just feel frustrated. The next time I feel really good again is on the second week of March. Although the sun will be producing UVI 3 in Spain already around the middle of February.

The problem is that in order to spent enough time in UVI 3 around the year, I would have to fly to Gran Canaria, Spain, where UVI is over 3 all year around. Living costs over there are a bit higher than in South of Spain but the rent and the flights are too expencive for me. Right now I can rent a bedroom, livingroom with kitchenet with 400 to 500 euros a month in South of Spain but in Gran Canaria similar appartments costs minimum 850 euros a month. That would be too much. But you take what you can get. I am quite happy with what I now have, with my wife and the dog. I don't feel anymore so depressed, that I would like to die, anymore. That was the situation before Spain, between February and May, every year.