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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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A treatment that helps me tremendously

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
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...
I get that way too when I've overdone it. I get gloomy. :(
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...
I do sometimes wonder if taking Calcitriol would help you. It's the final version of Vitamin D but there is the risk of raising Calcium levels too high on it. Also it has a very short half life so has to be taken several times each day.

This site: https://www.drugs.com/mtm/calcitriol.html says, "Calcitriol is used to treat hyperparathyroidism (overactive parathyroid glands)"

Have you ever been checked for that, @Johannes?

This site talks more about it including symptoms:
https://stopthethyroidmadness.com/parathyroid/

Maybe something to ask your doctor about.
 
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Johannes

Senior Member
Messages
312
I do sometimes wonder if taking Calcitriol would help you. It's the final version of Vitamin D but there is the risk of raising Calcium levels too high on it.

Have you ever been checked for that, @Johannes?

Maybe something to ask your doctor about.
Thanks Judee!

I have red about it. I am injecting vitamin 3D because it is safer. When my dosage was figured out by testing different levels of vitamin 3D, we went quite high with the dosage. The highest in dosage was 250 mcg per day. With that dosage my vit D3 level was 405nmol/l. Maximum recommended was 300nmol/l. There were no signs of toxication or any side effects. But the most interesting thing was, that all the benefits from vitamin D3 were achieved on lower dosage. The maximum help with minimum dosage was 208mcg per day. With this dosage I don't have to measure my vitamin, parthormone and ionized calsium levels. It seems that it is not only about the dosage but the frequency of injections, as I begun to have symptoms when the frequency was one injection per 14 days but I don't have symptoms when it is one injection per 12 days. Atleast that's what my previous doctor said. The symptoms came more easily in winter and rising up the dosage would not take them away. Only sunshine would take them away if the dosage was 208mcg per day.

My doctor said my body has problems to convert vitamin D3 to its active form. This might be due to gene mutation. When cells in CFS have not got enough energy to convert vitamin 3D to its active form, they need excess of vitamin D3, in order to convert enough. This could be treated with calcitriol too.

I haven't talked about this with my doctor. I have had four CFS doctors and all of them have been aware of my situation but none of them have suggested calcitriol.

Since injecting so big dosage of vitamin D3 doesn't help alone but sunhine + lower dosages of vit D3 help, I think that calcitriol would not help me more than vitamin D3. There must be something else in sunshine that makes the difference. As discussed before, sunshine through eyes affects hormone production and the production of brain derived neurotrophic factor.

And then there is my MCAS. According to studies, it is the D3 form that stabilizes mast cells which are causing havoc in my system. That stabilization may be the reason why about half a dozen of non CFS related symptoms disappear already at lower dosages, such as above 50mcg per day and some more symptoms disappear of gets milder when the dosage is approximately 100mcg per day.

Calcitriol may or may not help more than D3. I think maybe not.

But what I know would help is LDN. Unfortenately, I couldn't use it because on my chemical intolerance. And eating more protein during the day helps too. I have reasently found out that I start to feel lousy if I don't get enough versatile aminoacids every three to four hours through out the day.
 
Messages
97
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?

For myself, I don't fee UV is the complete picture. I probably mentioned this once before in another thread but my memory isn't serving me well.

Have you tried an Infrared sauna? Are there any in your area that you can go to for approximately 45mins or how ever long they allocate a session? During my winter (we just entered summer here) I used infrared saunas a few times and each time the fatigue was reduced to almost zero. Mood also improved, but this was obviously short-lived as I cooled down and returned to the cold temperatures, however they don't really compare to those you speak of. We go as low as UVI 2, but somehow I still feel bad, which had me thinking, sun exposure is UV + Infrared, and maybe this combination is what's required.

Infrared saunas provide that 'intense heat' that you get in the summer sun. It's not extreme, and I didn't feel the need to leave the sauna occasionally as I have to with traditional saunas or steam rooms.
 
Messages
97
I get that way too when I've overdone it. I get gloomy. :(

One thing I've discovered, and have spoken about recently is my experience with various B vitamins. Have you tried a high dose of B6?

I found a brand at the local chemist which has 200mg. In contrast a B-complex formula (you the one that turns your urine fluorescent yellow) has only trace amounts of B6.

Ive been taking B6 for a few days now and it really lifts my mood. You'll probably have noticed my bad attempt at humour in one of my earlier posts a few days ago, due to this 'big lift' in mood and motivation. I felt really good for no other reason but the likelihood of what this high dose of B6 did. This stuff seems to turn up the dopamine levels because I felt like doing everything, and as expected, I crashed hard at the end of the day because I did too much.

I have to admit there may be some part to play with the warming weather, but the weather has been swinging up and down the past few weeks which usually trashes my energy levels.

Be careful with high levels of B6. It can trigger peripheral neuropathy, or a tingling/burning sensation if too much is taken.

B3 (at 500mg) is another that kick starts my energy, but reportedly by others it can also have a sedating effect on some.
 

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
Ive been taking B6 for a few days now and it really lifts my mood. You'll probably have noticed my bad attempt at humour in one of my earlier posts a few days ago, due to this 'big lift' in mood and motivation. I felt really good for no other reason but the likelihood of what this high dose of B6 did. This stuff seems to turn up the dopamine levels because I felt like doing everything, and as expected, I crashed hard at the end of the day because I did too much.

Be careful with high levels of B6. It can trigger peripheral neuropathy, or a tingling/burning sensation if too much is taken.
Thank you. :) I can try it and see. I really have been hoping something will help.

I ordered some Omega 3 Fish oil but it's not working like I wanted.

I'll also watch for neuropathy as I already have that and Reynauds to some degree but still you make me want to try it hopefully for the mood lift. :)

Edit: Can I take it in the morning so it won't mess with my sleep? Is that what you do?
 
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Johannes

Senior Member
Messages
312
For myself, I don't fee UV is the complete picture. I probably mentioned this once before in another thread but my memory isn't serving me well.

Have you tried an Infrared sauna? Are there any in your area that you can go to for approximately 45mins or how ever long they allocate a session? During my winter (we just entered summer here) I used infrared saunas a few times and each time the fatigue was reduced to almost zero. Mood also improved, but this was obviously short-lived as I cooled down and returned to the cold temperatures, however they don't really compare to those you speak of. We go as low as UVI 2, but somehow I still feel bad, which had me thinking, sun exposure is UV + Infrared, and maybe this combination is what's required.

Infrared saunas provide that 'intense heat' that you get in the summer sun. It's not extreme, and I didn't feel the need to leave the sauna occasionally as I have to with traditional saunas or steam rooms.
I tried near-infrared ligh, which is almost invisible. I tried it together with UVA and UVB. It didn't help. Near-infrared is quite close to infrared. The only help I got from near-infrared only, was that I didn't feel nausiated when I started to sunbathig. No, I haven't tried infrared sauna. Maybe one day I try that too.
 

Johannes

Senior Member
Messages
312
I though I include a photo from our terrace from today, our independence day. These terrace glases can be opened but in winter, it is easier to have them closed so that it doesn't snow in. Huge difference to Spain, don't you think? It is quide dark too, because in winter we don't have much sunshine.
 

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97
Thank you. :) I can try it and see. I really have been hoping something will help.

Edit: Can I take it in the morning so it won't mess with my sleep? Is that what you do?

Based on my experience I'd cautiously suggest taking no more than one B6 (if the potency is 200mg) in the morning. B6 and B3 (for me) really seems to be 'firing me up', maybe too much.

With that comes a warning... shortly before writing this reply I was about to call an ambulance because I couldn't breathe. This happened after taking B6, Activate B12 and GABA. GABA should calm things down, but roughly 15mins after taking this stack, which I had with a meal, it felt like someone punched the air out of me and any attempt to breathe was like breathing in carbon dioxide. It almost felt like an anxiety attack.

Fortunately I have a CBD vape on hand. This seemed to calm things down quickly so I think I'm OK at the moment, but feeling a mixture of anxious, high as a kite, and tired, all at the same time.

I'll need to run this past my GP who I'll be meeting with shortly.

Some thoughts/hypotheses on what may have gone wrong:
- taking B6 and activated B12 (sublingual) may be too strong for me. If you decide to take these, I'd suggest take them separately, each with a meal.
- GABA may have somehow caused this, but again GABA is supposed to have a calming effect so it's unlikely.
- We're officially in a heatwave here in Canberra (according to the Bureau of Meteorology). Having been exposed to constant warm temperatures (no less than 20℃) for a number of days appears to have altered how I react to these natural supplements.
- For a few days now I've been increased B3 intake from once to twice a day, each time with a meal. That's 1000mg/day. Maybe too much for me?

But most of all, run this past your GP before experimenting with these. I had no idea natural supplements could have a drug-like reaction like this.
 
Messages
97
I do sometimes wonder if taking Calcitriol would help you. It's the final version of Vitamin D but there is the risk of raising Calcium levels too high on it. Also it has a very short half life so has to be taken several times each day.

I just noticed this post. Apologies, but I'm reading-challenged when I'm not fully rested, and tend to skim through what I can with the energy I have at any moment.

If concerned about excessive calcium have you considered Vitamin K? Thorne does a K1 plus 2 types of K2 supplement that apparently takes calcium out of soft tissue (where it doesn't belong) and places it in your bones (where it does belong).

I take this with a protein shake, which I mix in Calcium Ascorbate (Easily digestible form of vitamin C).

As always, this may be a discussion to be had on your next GP visit before considering taking this.
 

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
Based on my experience I'd cautiously suggest taking no more than one B6 (if the potency is 200mg) in the morning. B6 and B3 (for me) really seems to be 'firing me up', maybe too much.
I'm sorry you went through all that @Long Haul Mono. :(

I'm starting to just rotate any supplements other than my anti-viral type herbs. I think we're super sensitive even to vitamins which has made me wonder if we only take them maybe every 3-7 days instead if we wouldn't get some benefit without the surprises.

***Edit: Because I took 100mg B6 that first day and only maybe 25mg (1/4 pill) the next day and none since then. However it seems like my first sleep segment has lengthened. I've had at least two nights now where it went to 6+hours. I still have to take about 3mg of benedryl to fall asleep and then again when I wake up after the first segment to get to 8+ hours but for it to lengthen like that makes me think the B6 helped and even continued to after I stopped it.

If concerned about excessive calcium have you considered Vitamin K?
I'm not using Calcitriol. I just wonder about it. I saw a one person study of someone with POTS improved but she had other issues as well.

I do take Vitamin D3 (Prohealth D3 Extreme) about 2x a month with a K2 and vitamin C. I have to take the K2 or I get leg cramps from the D3 (which is what calcium supplementation does to me too) and the Vitamin C because I take a high dose D3 which sometimes seems to cause a type of scurvy for me if I take too much so that's why I added the Vitamin C.

K1 makes me bruise. I don't know why. It did that to my Mom too. :(
 
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Messages
97
...I think we're super sensitive even to vitamins which has made me wonder if we only take them maybe every 3-7 days instead if we wouldn't get some benefit without the surprises.

***Edit: Because I took 100mg B6 that first day and only maybe 25mg (1/4 pill) the next day and none since then. However it seems like my first sleep segment has lengthened. I've had at least two nights now where it went to 6+hours. I still have to take about 3mg of benedryl to fall asleep and then again when I wake up after the first segment to get to 8+ hours but for it to lengthen like that makes me think the B6 helped and even continued to after I stopped it.

It's great to hear you're having some success with B6. I think I'll need to space my B3, B6, (activated) B12 intake similar to what you suggested above.

I think what's happening to me at the moment is the definition of 'heart palpitations'. Again, I never thought natural vitamins could (apparently) cause such a reaction.

Suffice it to say, the next day or two may be good to lay off the B-vitamins. :oh-dear:
 

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
Huge difference to Spain, don't you think? It is quide dark too, because in winter we don't have much sunshine.
Yes, last week here was also quite gloomy. Winters can be pretty in their own way but it does get hard sometimes not seeing the sun for days.

Thankfully we had a sunny days yesterday and today so that helped. The last two winters here were pretty brutal though with lots of snow and sometimes very cold temperatures. :(

I'm praying for a mild winter. They're saying we'll have an El Nino Weather cycle this Winter so maybe... :)
 

Judee

Psalm 46:1-3
Messages
4,395
Location
Great Lakes
Not sure if this would be something that could be helpful. Maybe at least for the eyes and the mood? (I'm also not really techy so if you're not either maybe ask an electrician to help if you decide to try something like this. ???)

 

Nord Wolf

The Northman
Messages
541
Location
New England
Sunshine in Spain! Well here in the northern New England Mountains we will have to wait until May to see adequate sun again. Rather, this is what it looks like out my window now.

Though it is dark, I rather enjoy this look for this time of year. Wood stove burning, snow falling, and the mountains gone quiet for the long winter.

Even so, my body has been missing the direct sunlight since October.

IMG_4272.JPG


IMG_4273.JPG
 

Johannes

Senior Member
Messages
312
Sunshine in Spain! Well here in the northern New England Mountains we will have to wait until May to see adequate sun again. Rather, this is what it looks like out my window now.

Though it is dark, I rather enjoy this look for this time of year. Wood stove burning, snow falling, and the mountains gone quiet for the long winter.

Even so, my body has been missing the direct sunlight since October.

View attachment 53049

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Beautifull! And sound cosy.

Our snow is gone. It is +3°C.

I've been wondering where you are, since you've been so quiet lately.

I have been updating our laundry room. New cabinets, table top, sink and faucet. Table top from ready made beech panel. Needs a couple of layers of lacquer before it is finished. But it is slow work, because I am so (too) thorough and because I am starting to loose my strenght. But it should be ready in a few days. I am not going to spent my christmas laying tired at my bed. So it is time to slow down. I am starting to prepare christmas foods for freezing. I will thaw them when the time comes.

Have a Merry Christmas y'all!
 

Nord Wolf

The Northman
Messages
541
Location
New England
I have been rather quite and absent here on PR. In early autumn I had a bit more energy seemingly out of nowhere. So, I chose to invest some of that energy into setting up future plans for online counseling work with my old job in the New Year. They agreed with open arms. Of course, that required me to roll from the Independent Living program through the state Department for the Blind and Visually Impaired to the Vocational program. The Vocational program has a larger funding base which will allow DBVI to both purchase me better technology, like a new computer with advanced visual aid applications, but also more training on how to use the tech. All of that is essential for me to be able to work again, at least very part time. I don’t have the strength or energy to work even regular part time hours… yet. But I have high hopes.

Then at the end of October my wife and I fell ill with the common cold that knocked us down for a week. A week later our service dog was brutally attacked by a malamute who was running off a leash. Our dog almost died and spent a week in the animal ICU, and then had to be brought to the vet every two days for 6 weeks to have bandages changed and wounds cleaned!

So, November was a brutal month for us.

Now that Yule is upon us and our dog has healed up nicely, we have switched gears again. Though I was in bed all last week with severe PEM… I’m still dragging through the mud, but am able to spend most of the day on the couch rather than up in bed!

Sounds like a worthwhile project you have going. So you did not go to Spain, or you will be going come January?
 

Aidan Walsh

Senior Member
Messages
371
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?
If someone is helped by the Sun or even Vitamin D3 Gel forms they could have MS all along & is missed on testing. Ron Davis says as many as 25 to 30% have MS he mentioned this in London I think his last conference there by doing some pcr & other tests in his lab.

Vitamin D3 also can be dangerous high doses it can cause kidney failures in some xx

I believe the Sun helps it also helps with pain. Also the Salt in the Ocean or the Salt Air/Rain could also be helping. I believe I may have found my cause of illness, I ran the panel of the Alpha Gal Meat Allergy in London a few years ago.

I went back over all my complete panels Negative results, my Alpha Gal Alpha Galactose-Alpha Galactosaide was completely non existent.

Anything below 1.2 AG is also indicative of FABRY DISEASE my level AG deficiency was 0.01 I will need replacement enzyme therapy every 2 weeks for life with Low fat foods Meats & lactose free skim milk is safe avoiding fat dairies & I need a genetic test done to confirm this now xx
 

Johannes

Senior Member
Messages
312
I have been rather quite and absent here on PR. In early autumn I had a bit more energy seemingly out of nowhere. So, I chose to invest some of that energy into setting up future plans for online counseling work with my old job in the New Year. They agreed with open arms. Of course, that required me to roll from the Independent Living program through the state Department for the Blind and Visually Impaired to the Vocational program. The Vocational program has a larger funding base which will allow DBVI to both purchase me better technology, like a new computer with advanced visual aid applications, but also more training on how to use the tech. All of that is essential for me to be able to work again, at least very part time. I don’t have the strength or energy to work even regular part time hours… yet. But I have high hopes.

Then at the end of October my wife and I fell ill with the common cold that knocked us down for a week. A week later our service dog was brutally attacked by a malamute who was running off a leash. Our dog almost died and spent a week in the animal ICU, and then had to be brought to the vet every two days for 6 weeks to have bandages changed and wounds cleaned!

So, November was a brutal month for us.

Now that Yule is upon us and our dog has healed up nicely, we have switched gears again. Though I was in bed all last week with severe PEM… I’m still dragging through the mud, but am able to spend most of the day on the couch rather than up in bed!

Sounds like a worthwhile project you have going. So you did not go to Spain, or you will be going come January?
Congrats for a new job! You've had lots to do. Sounds like a busy autumn.

I am sorry about your dog 😥 I hope he/she didn't get any mental trauma, which would make harder for the dog to do its Job.

I had so bad bed in Spain that I got micro spinal disc herniation on one disc. My muscles had become so weak, because of years or laying, that they didn't support my spine enough, when I slept on my side. My back was pretty sore for four weeks, until I started to sleap on a softer coutch. It still is hurting a bit if I rotate my spine in bed. Had to go to chiropractor, massager and doctor. I had x-ray and MRI. I was covered by my travel insurance, except chiropractor and massage. It doesn't hurt when I sit or stand, and when I am at my back. And the pain is now minimal but brutal, because I can't have pain killers because of my chemical intolerance.

We came back from Spain on the 28th of November, after 6 weeks. We fly back to Spain on the 3rd of February for 11 weeks. I need to make sure there's a good bed, or otherwise buy a good and thick mattress topper. But there will be no UVI 3 before the middle of February.

We met there a finn, who said he would like to rent us an appartment from Spain in the future. That would mean, that I could leave some of our stuff to his appartment, such as a matress topper, electric kickbike, water filter, linen, etc. It would be so much easier to travel with this kind of arrangement. Less stuff to fly with, and more comfortable living.
 

Johannes

Senior Member
Messages
312
If someone is helped by the Sun or even Vitamin D3 Gel forms they could have MS all along & is missed on testing. Ron Davis says as many as 25 to 30% have MS he mentioned this in London I think his last conference there by doing some pcr & other tests in his lab.

Vitamin D3 also can be dangerous high doses it can cause kidney failures in some xx

I believe the Sun helps it also helps with pain. Also the Salt in the Ocean or the Salt Air/Rain could also be helping.

"If someone is helped by the Sun or even Vitamin D3 Gel forms they could have MS all along & is missed on testing. Ron Davis says as many as 25 to 30% have MS he mentioned this in London I think his last conference there by doing some pcr & other tests in his lab.


Vitamin D3 also can be dangerous high doses it can cause kidney failures in some xx


I believe the Sun helps it also helps with pain. Also the Salt in the Ocean or the Salt Air/Rain could also be helping."


Interesting from Dr. David. But if I had MS, wouldn't I have MS symptoms too, even before I got sick with CFS.


According to a big good quality study, vitamin D level needs to be pretty high before it affects kidneys. My dosage is 200mcg per day and my vitamin D level in my blood is qround 300nmol/l. No kidney problems. I have been tested regularly since year 2014: parathormone, active form of vitamin D, ionized calsium, which are the key markers of vitamin D toxicity. Also tests for kidneys have been included.

In this high quality seven year study a safe dosage for most of the patients was 50 000 IU (= 1250 mcg) a day. None of the patients had hypercalcemia or signs of toxicity. The level of vitamin D with that dosage was 202ng/ml (=504nmol/l) maximum.

In the same study it was found that dosages between 5000 and 60 000 IU resulted vitamin D levels of 100ng/ml - 384ng/ml (250nmol/l - 958nmol/l) without hypercalcemia or signs of toxicity.

Here's the study:
Patrick J.McCullough Douglas S. Lehrer Jeffrey Amend, Daily oral dosing of vitamin D using 5 000 to 50 000 international units per day long term hospitalized patients: insights from a seven year experience. The journal of steroid biochemistry and molecular biology 189/2019, ss 228-239

It can be found here:
https://www.sciencedirect.com/science/article/abs/pii/S0960076018306228


That's an interesting thought about salt. I live near by the sea in Finland, and in Spain there is a sea near by my appartment. It is possible that the salt has something to do with my well being. But I still got these effects from sunshine even when I didn't live by the sea.
 
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Nord Wolf

The Northman
Messages
541
Location
New England
they could have MS all along & is missed on testing
I’ve often wondered about the MS piece for me. I was diagnosed with PoTS after testing positive a while back. I was also diagnosed after testing with dysautonomia other than PoTS. I was diagnosed with ME because I fit all required points, but there is no absolute tool for diagnosing it. That is the same with MS. There is no absolute diagnostic tool for MS. Rather, it is a process of ruling out everything else combined with a detailed medical history.

That being said, I do have many MS symptoms:

Fatigue - chronic and severe
Weakness - chronic and at times severe
Endocrine issues
Tidal difficulty swallowing
Emotional swings - can be severe
Cognitive complications
Chronic pain
Itching
Vertigo and severe neurological vision issues
Chronic muscle spasms and cramps
Mild numbness
Mild tingling sensations in fingers

My father’s sister (my aunt) has MS.
Also, medical science has linked Scandinavian genetics to being more predisposed to developing MS than many other genetics. And I have strong western Scandinavian and northern Germanic genetics.

As to the symptoms, many of course overlap with dysautonomia conditions other than MS.

Anyway, it is something my medical team has not yet ruled out.