A treatment that helps me tremendously

helios

Senior Member
Messages
136
Location
Brisbane
I had mixed experiences like you when it came to sunshine. Early on it was hard to tolerate, and even to this day my health every year in summer slumps + I lose weight (Im just starting to pick up again now after last 3 mths) Back when I originally crashed with CFS years ago my expsore to the sunshine was pretty good as I used to like to spend plenty of time down the beach, so it didnt do me any favours when it came to preventing me from getting CFS.

About 4 yrs ago though after a big slump from Lyme treatment + over doing it at the gym, I slowly recovered back to the point I could work again and it was from starting out by spending time down the bearch, then doing casual outdoor gardening/painting/house reno jobs, then back to IT office work. My vitamin D levels around this time were at about the 1/3 of the normal range despite being outdoors, however I would wear hat + sunscreen. I think the fresh air and physical movement and having small scale tasks to focus on were also big factors.

I tried to boost my vitamin D levels at one point using capsules (high dose) + vitamin K but my health (espcially brain fog + body inflammation) went downhill for a number of months. When I take vitamin D injection however I dont have any adverse effects but maybe it does not reach high levels when I metabolise it over the 6 months. Its just a shame its so expensive (only cheap if you have osteoporosis).
 

CSMLSM

Senior Member
Messages
973
Post was edited for some reason, relevant missing info-
Eggs contain vitamin K as well as vit D.
 

Johannes

Senior Member
Messages
340
Prof. TREVOR MARSHALL, PhD you will find videos on youtube about this I highly reccomend although from what I remember (I was very ill then) it is quite technical you may need to stop videos and go learn something and come back to it.
Fascinating stuff and was integral to my understanding of this condition on my journey to recovery.

Also if you are getting benefit from supplementation thats because you are deficient and your body is able to convert enough Vit D (maybe) and has improved your symptoms.
This is a spectrum and your body may be alot or very little below actual Active hormone Vit D level that is optimal and what it should be if you are homeostatically balanced biochemically. Hormonally active Vit D regulates a hell of alot of stuff in your body as you will hear in some of the videos.

I hope you enjoy them I did.

Daniel

I did watch a few of his videos. He seem to be talking in a context of autoimmune diseases. CFS is not an autoimmune disease, so what he says may or may not be aplicable to us.
 

CSMLSM

Senior Member
Messages
973
Hi Johannes

Saying ME/CFS is not autoimmune is not exactly correct. Autoimmunity is self reaction and your own defenses (immune system) ATTACK you, right.


Now say you have an underlying infection for example a LATENT EBV infection that has to evade the immune system and to do this it does something to your normal functioning of you immune system in this case Viral Interlukin 10 is produced and messes with the equalibrium of the present human Interlukin 10.

This causes a suppression of the innate immune system and slightly activates as a consequence, an adaptive immune trigger that sends out cytokines signalling immune dysfunction and thus your immune system is damaging your body and messing with the homeostatic balance of the immune system.

This may not be self reaction (ATTACKING), however you are directly DAMAGING yourself by immune DYSFUNCTION that acts like autoimmune in nature.

This is what I believe after searching for answers for at least 20 years.
I am in recovery because of this because I have developed a cheap safe and available to all treament that anyone can make by themselves.

I want to share with you all.
Please believe me, this is real. Based on science.


Daniel
 

Johannes

Senior Member
Messages
340
Hi Johannes

Saying ME/CFS is not autoimmune is not exactly correct. Autoimmunity is self reaction and your own defenses (immune system) ATTACK you, right.

-----

This is what I believe after searching for answers for at least 20 years.
I am in recovery because of this because I have developed a cheap safe and available to all treament that anyone can make by themselves.

I want to share with you all.
Please believe me, this is real. Based on science.


Daniel

I am not an expert but I haven't found a single scientific paper claiming that CFS would be autoimmune disease. Quite the opposite, I have found a handfull of them telling it is not.

Could you, please, tell about your own treatment that you have developed? Although, I am quite sure it is not for us, who have serious chemical sensitivity as much as to that no oral supplements or medicines can be used.
 

CSMLSM

Senior Member
Messages
973
I am not saying it is autoimmune and you have misunderstood the context of the videos.

We are talking about immune dysfunction which autoimmunity is but dysfunction is not autoreactive, it is disruptive.

The videos about VDR are merely a way to explain one small part of this. Very small.

I was you, with chemical sensitivity at the severe end of the condition - ME/CFS.

Daniel
 

Johannes

Senior Member
Messages
340
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. 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 thorsday I did a two hour trip to shopping. A month ago it 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.
 

Johannes

Senior Member
Messages
340
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. 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 thorsday I did a two hour trip to shopping. A month ago it 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.

Ok, maybe I was too happy for having these positive feelings and over did it. After so many things I did, I did finally get PEM for two days. Depression is one of my symptoms if I do too much and that's why I was so happy to do also things, because I didn't feel depressed. In the future, I have to concentrate not being depressed anymore and resting and just waiting untill I can actually do more with out symptoms.
 

Learner1

Senior Member
Messages
6,311
Location
Pacific Northwest
Ok, maybe I was too happy for having these positive feelings and over did it. After so many things I did, I did finally get PEM for two days. Depression is one of my symptoms if I do too much and that's why I was so happy to do also things, because I didn't feel depressed. In the future, I have to concentrate not being depressed anymore and resting and just waiting untill I can actually do more with out symptoms.
https://www.thriftbooks.com/w/optim...tE0aApPMEALw_wcB#idiq=5207541&edition=5848003
 

Johannes

Senior Member
Messages
340
I don't know if anyone is interested but I decided to write about my progress. Since 1. of May I have been able to sunbath approximately 3 hours almost daily. Some days even five hours.

I have been able to fix our boat for two hours plus driving 20 minutes car and sitting 90 minutes in a car altogether, when my wife was driving. This has happened twice and I have rested five days in between. I haven't had a headache, deppresion or PEM but I have been very tired laying in a sofa for three days after each of my trips to a boat yard.

In addition, I have been able to cook food twice with the help of my wife. This all is a bit too much to do at this point. But in previous years I have had to lay down longer and haven't been able to fix the boat without seven days rest in between the fixing days. So the longer I lay in sunshine the more I have energy to do things.
 

Long Haul Mono

Senior Member
Messages
122
...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?

Yes. Summer takes away the worst of it and winter brings it all back again, but I don't have Seasonal Affective Disorder. It's more of a body temperature thing, ie the rare 'cold bursts' that may come in summer (and they do here in Canberra) bring back the worst of the symptoms.

Move to warmer climates? I'm trying but that's not an easy thing to uplift your life and move, especially when you're 50, facing both disability and age discrimination and the likelihood of limited employment prospects.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
I began having a really hard time through the winters about 5 years ago: depression, low energy and crashes. It seems to be the result of having started fairly extreme mold avoidance during the summer, and then continuing to do my best with avoidance through the winter while not being able to use my trailer (it's too cold for that here).

A lot of people in the extreme mold avoidance community talk about these winter blues, it's not just me. I managed to not really crash this last winter. I forced myself out into the sun for at least an hour whenever it was clear. I also supplemented with vitamin D and fish oil.

I think there are infections that endeavor to keep us out of the sun. I always noticed I really enjoyed being outside when I was taking antiparasitics, like I was able to connect with nature for the first time. Quite something. Other than that I've not much been inclined to be outside. But as of the last 5 years it's feeling better and better. This summer I'll be taking on my various infections with gusto, as it's much less painful to do so in the summer months.
 

Johannes

Senior Member
Messages
340
After having spent many hours at the boat yard plus doing some home work, I can conclude, that the more time I am in sunshine and the higher the UV index, the more I can do light or medium hard work. UV index here in Finland is not more that 4 this time of the year.

I have now been fixig our boat approximately twice a week four hours at the time. My wife does the driving, because I am too tired to drive to the yard. It takes three to four days to rest, in order to get well rested. The first day after overdoing is hardest. But I am not still all that time. I am doing some light things at home, and walking 2 x 10 minutes with our dog. I wish there was a way to know how long I can work, so that I could stop before I overdo. Mostly I stop working only after I notice, that I should have stopped 30 minutes ago. I have to say that this is too hard. I wouldn't do this much if I could avoid it, but I really want to go sailing and living onboard with my wife. For now it is not possible because the boat is not water tight. It should float again before the middle of June.
 
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Johannes

Senior Member
Messages
340
I managed to go fix our boat 15 times this Spring/Summer, altogether appr. 55 hours. I was so tired all that time. But my muscles and cognitive problems recovered pretty fast, in a couple of days and I had PEM only once. The latest visits were 5 to 6 hours per day plus travelling time. Now it floats! 😄

Two more trips to wash it and carry matresses and other textiles etc. onboard but this time travelling time is only 25 minutes because the boat is now in its summer pear.

Sunshine has helped me this year more than ever since I got sick. I look forward to sail whole Summer. I will write my next update around September.

Have a nice Summer!
 

Judee

Psalm 46:1-3
Messages
4,590
Location
Great Lakes
Question for anyone who is doing this and feels like they are benefiting:

1) Did you feel like you were sunburnt even if you didn't actually get any kind of sunburn? I suspect I may have SFN (Small Fiber Neuropathy) and I think it's stirred that up a little, even the day after, I feel sunburned.

2) Do you feel hyperactive like for days afterward, at all? I have only done 3-10 minute sessions this last week but I feel hyperactive; not more energetic unfortunately, just hyperactive...over talkative, OCD, like a kid on a sugar high or something. :)
 

Johannes

Senior Member
Messages
340
Question for anyone who is doing this and feels like they are benefiting:

"1) Did you feel like you were sunburnt even if you didn't actually get any kind of sunburn? I suspect I may have SFN (Small Fiber Neuropathy) and I think it's stirred that up a little, even the day after, I feel sunburned."

No, I did't.

"2) Do you feel hyperactive like for days afterward, at all? I have only done 3-10 minute sessions this last week but I feel hyperactive; not more energetic unfortunately, just hyperactive...over talkative, OCD, like a kid on a sugar high or something. :)"

No, not at all. I felt more like tired.
 

Judee

Psalm 46:1-3
Messages
4,590
Location
Great Lakes
No, not at all. I felt more like tired.

I wonder if my reaction to the sun is because I suspect I may have ADHD. I seem to get a lot of paradoxical reactions to things.

I know you said you didn't feel well in the beginning of your sun exposures and had nausea. I get that as well so hopefully this hyper reaction and sunburn feeling will go away too. Hopeful. :)

Thanks for responding.
 

pamojja

Senior Member
Messages
2,495
Location
Austria
Question for anyone who is doing this and feels like they are benefiting:

1) Did you feel like you were sunburnt even if you didn't actually get any kind of sunburn? I suspect I may have SFN (Small Fiber Neuropathy) and I think it's stirred that up a little, even the day after, I feel sunburned.

2) Do you feel hyperactive like for days afterward, at all? I have only done 3-10 minute sessions this last week but I feel hyperactive; not more energetic unfortunately, just hyperactive...over talkative, OCD, like a kid on a sugar high or something. :)

When I surnburn every day 4hrs in suptropical sun during winter, I never get sunburned nor do I feel sunburned. Also no hyperactivity. I don't eat anything sugar, or even carbohydrates (grains, potatoes, bread, rice..) by the way.
 

Judee

Psalm 46:1-3
Messages
4,590
Location
Great Lakes
When I surnburn every day 4hrs in suptropical sun during winter, I never get sunburned nor do I feel sunburned. Also no hyperactivity. I don't eat anything sugar, or even carbohydrates (grains, potatoes, bread, rice..) by the way.

Thanks for the feedback. It's helpful. :)

Oh, I didn't mean I was on sugar high; just that it felt that way. Sorry for the confusing description.
 
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