A treatment that helps me tremendously

[Johannes]

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/

Thank you! Have you found out the functioning of eac mutated gene?

 

[Judee]

Have you found out the functioning of eac mutated gene?

No, I tried to using snpedia but not much info there on each one of those. I haven't been on Sterling's app for a while but maybe I'll log back in and see if she has more info.

 

[triffid113]

Has anyone tried astaxanthin? I read it protects mitochondria and lowers fatigue. Sounds like a useful thing for cfs. Also, although it is 3000x as powerful an antioxidant as VitaminC, it can never become a pro oxidant. Lastly of interest - it works inside AND outside the cell wall. (C only works outside, E only works inside). It sounds worth a try or worth looking into. Thought I'd pass it on.

 

[triffid113]

Vitamin K2 is required to put calcium in your bones. If you do not take it as a supplement (or via national cheese) calcium will go into your arteries. This is called hardening of the arteries. There is not enough K2 in the American diet. Hence, always take k with your d and calcium. Not really to do with cfs but clogged arteries can make you tired! And k2 can also pull calcium out of your arteries to put it in bone where it belongs.

 

[triffid113]

Long time ago I read Martin Pall wrote that cfs was due to a peroxynitrate (oxidant) problem. I am only on a cell phone, it's late, etc. But there are some papers out there about what happens when you.pit astaxantjin against petoxynitrate. I'm afraid it required more reading than I'm up fo now, but might be worth delving into.later.

 

[Long Haul Mono]

Has anyone tried astaxanthin? I read it protects mitochondria and lowers fatigue. Sounds like a useful thing for cfs. Also, although it is 3000x as powerful an antioxidant as VitaminC, it can never become a pro oxidant. Lastly of interest - it works inside AND outside the cell wall. (C only works outside, E only works inside). It sounds worth a try or worth looking into. Thought I'd pass it on.

I'm going to give this a run, ie started today. It was fairly expensive but I was keen to get some today after reading your post, but I'll try sourcing cheaper somewhere else. It's 1 a day at 12mg/cap.

Vitamin K2 is required to put calcium in your bones. If you do not take it as a supplement (or via national cheese) calcium will go into your arteries. This is called hardening of the arteries. There is not enough K2 in the American diet. Hence, always take k with your d and calcium. Not really to do with cfs but clogged arteries can make you tired! And k2 can also pull calcium out of your arteries to put it in bone where it belongs.

My GP got me on the Thorne brand (iHerb) which contains K1 and K2. I'm taking it for that reason, ie reroute the calcium into the bones.

Other supps I've tried, and continue with:
- Ubiquinol: I heard of this from Dr. Nancy Klimas, who is involved in ME/CFS research.
This supplement had a strange, unexpected effect. At the time when I started it, I had really bad tooth sensitivity, to the point that I couldn't even eat fresh (not frozen) vegitables taken from the fridge. After only a short time on Ubiquinol this tooth sensitivity vanished.
I didn't intend to treat tooth sensitivity when I bought it. Dr. Klimas (via a video she posted) recommended it as part of ME/CFS, so, happy side-effect? Just make sure you're buying Ubiquinol and not Ubiquinone.
- Quercetin: Recommended by my GP. I can't say I've noticed any effect, but still taking it.

 

[Judee]

@Johannes, how are you doing with your sun therapy? Have you found a way for it to help you again?

 

[Johannes]

@Johannes, how are you doing with your sun therapy? Have you found a way for it to help you again?

Thanks for asking. I was doing quite well as long as I kept being in sunshine. Sailing was less and less exhausting. My muscles were, and are still growing. But then we had to fix our new home, and it took almost two weeks, several days a week. Cleaning, painting all the inside walls, and packing all our stuff for moving in. And unpacking. We had plenty of help from our friends. I am now starting to be a bit too tired and we still have couple of walls to paint and stuff to unpack. Last week we had our last sunhine with UV index 3 or more.

By the way, our new yard has potential to be much sunnier than the previous one. We just have to get rid of some trees.

In a week my friends are coming to help fix our garden. We will make "a paddic" for our dog and tear down some old structures from the forest. Then it is time to winterize our boat. She is still floating. And after that my friends are coming to cut seven plus trees to get more sunshine to our yard. My brother will install 16 pcs solarpanels to our roof. So much to do, so little strenght to do it. And after all that we can rest for two weeks untill we fly to Spain for 6 weeks.

I was dissapointed about how tired I was untill to the beginning of August. But I can understand now why. I didn't get enough sunshine in Spain but I still used my energy as if I would have. This winter I am wiser, and we already picked up months that actually have sunshine over there.

 

[Judee]

That is a lot of work to do. I'm glad you have help but still as you said it's a lot. Any way to enlist even more helpers so you can rest more?

I'm glad about your new yard and that you are going to Spain again. At least you can hopefully recharge then.

Will your wife travel with you or can you go again with the people from last year if they are going again too?

Only answer if you are able to. Saying a prayer for your work and travels.

 

[Johannes]

That is a lot of work to do. I'm glad you have help but still as you said it's a lot. Any way to enlist even more helpers so you can rest more?

I'm glad about your new yard and that you are going to Spain again. At least you can hopefully recharge then.

Will your wife travel with you or can you go again with the people from last year if they are going again too?

Only answer if you are able to. Saying a prayer for your work and travels.

My neighbour who helped me in Spain moved a few months ago and then suddenly, unfortenately, he died. No help there. But my wife is coming with me to Spain.

 

[Judee]

Aww...sad to hear about your neighbor.

 

[Judee]

Glad your wife is going with you though.

 

[Johannes]

One week untill we sail with a cruise ferry to Sweden and then fly from Sweden to Spain. We will then take a shuttle bus to Costa blanca area. There will be a small terraced house, one bedrooom + livingroom with kitchen waiting for us. Sunshine all day long. I have to watch out for sun burns, since I haven't been in sunshine for almost six weeks.

I am not feeling as fine as I was in August. My bowel doesn't tolerate as many foods as in Summer. This has started a week ago. I have problems to sleap and concentrate, because I do to much physical and brain work but as usual in this time of a year, I started injecting methyl cobalamine and sleep well again. My muscles don't work as well as in August. These are the first symptoms of not getting enough sunshine. I am a bit more tired than usually during August. I am quite sure, that it doesn't take more than two days in sunshine, and I feel fine again.

But I have done so much during the last month. No wonder I feel tired. I have participated in meetings in a different city concerning a renovation of a block house, and took apart six inspections there, which included driving one hour back and one hour forth. We winterized our boat. I planned/designed some drawings for the block house and for our on house (for cutting trees and installing solar panels). That is by the way the worst thing for my brains, the planning. If I do to much planning with my computer drawing program, I get first problems to concentrate and think, then a headache, and if I don't stop planning, then I get PEM. And I don't notice these symptoms untill it is a but too late, so after that I have memory problems and problems to sleap. And I have done so much small things like unpacking things, installing curtains, shelves, surround system, taking old building materials to recycling center, washing the moss off from roof tiles with pressure washer, etc. Actually so much things that I an too tired to do more. The trees will be cut and solar panels installed in December, after we come back from Spain.

I am excited to stravel to Spain. It is now very windy here and outside temperature is dropping. It is now 4 to 6 degrees Celsius and we even got a hail storm yesterday. In Costa blanca high temperatures are now 25 to 27. UV index there is 5. No clouds, only sunshine.

 

[Judee]

One week untill we sail with a cruise ferry to Sweden and then fly from Sweden to Spain

And your little dog too?

 

[Johannes]

Yes, he too

 

[Long Haul Mono]

...I started injecting methyl cobalamine and sleep well again...

Just out of interest, Have you tried Hydroxocobalamin?

I started injecting that daily (GP advise) but got a little put off, however I've started again because the sublingual "activated B12" supplements don't seem to do much for me.

 

[Johannes]

Just out of interest, Have you tried Hydroxocobalamin?

I started injecting that daily (GP advise) but got a little put off, however I've started again because the sublingual "activated B12" supplements don't seem to do much for me.

No, I haven't. My genemutation benefits methylcobalamin.

 

[Long Haul Mono]

No, I haven't. My genemutation benefits methylcobalamin.

Hydroxo is the only version I can get here, otherwise I'd give that a try just to see if it also works for me.
I have a double MTHFR mutation which lead my GP to recommend this as one of a number of treatments.

Also, let us know how you go with the Spain trip, ie regaining energy. I'm currently investigating how warmer climate may help my situation, ie winter (where I currently live) drains me of energy.

 

[Johannes]

Hydroxo is the only version I can get here, otherwise I'd give that a try just to see if it also works for me.
I have a double MTHFR mutation which lead my GP to recommend this as one of a number of treatments.

Also, let us know how you go with the Spain trip, ie regaining energy. I'm currently investigating how warmer climate may help my situation, ie winter (where I currently live) drains me of energy.

I order my methylcobalamin from Germany. The pharmacy don't request prescription, although I have one.

I have tried Red and near-infrared light. That did not boost my energy level but made it easier for me to sunbath after winter. I used to feel nauseated for the first six weeks after dark winter, when I started sunbathing again but with Red and near-infrared therapy 2 months before sunbathing I didn't. I tried green and blue light with no help. I tried bright light therapy and UVA and UVB radiation therapy with medical dosage, no help there. I tried longer day time and warmer sunny days in Spain when UV index was lower than 2 and it made me feel less depressed but it did not boost energy level but just a little. Only thing that really helped was sunshine with UV index over 3. And vitamin D injections, which help me get rid of a dozen of MCAS symptoms and some vitamin D deficiency symptoms, which I have if I dont use vitamin D with the minimum dosage of 180 mcg per day. I don't use any other supplements or medicine.

 

[Johannes]

Okay, here we are, in Spain. SAS Lost my luggage but I have a good travel incurance, which covers everything but using my strengt for shopping is not my idea of good life with my sickness. What comes to clothes shopping, It happends to be winter here (26°-33°C highest day time temperature, later less warm), so it is not easy to find summer clothes. They have winter clothes in stores. I still managed to find T-shirts, shorts and swimsuit but some of them are a bit small and wrong colours. Not so small but the cut in Spain is more narrow in sholders. But you have to take what's available.

The sun is shining plenty. By my surprize, I wasn't very tired after travelling but quite. But I recovered quite quickly. It may be, that when one spent so many months a year is sunshine, the body doesn't need so much time repairing itself than after a long dark winter.

I had sleeping problems for two days but now I feel fine. Yes, the sunshine is helping me again. Two days sunbathing did It. Now I can walk fine with the dog and go evening walks with my wife and the dog to sea shore. The sea (Paseo Maritimo = Sea bulevard) is appr. 5 km from where we live. It takas 12 minutes and 12 euros with taxi from our appartment to sea shore. Big swimming pool with restaurant is 300 meters from our front door. Unfortunately, the food there is not good for ke because of my chemical intolerance, but they sell good german and spanish draft beers. My muscles don't recover easily yet, but faster than in winter. My bowel doesn't tolerate my versatile diet yet.

I will write more about how sunshine helps after a few days, when I have numeric data about my walkings.