Red and near-infrared light therapy, LEDs

Johannes

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Thanks for posting about your seasonal changes @Johannes and @pamojja !


Yesterday I spent an hour reclining outside in the sun, my POTS really acted up in the heat though and I feel exhausted today. But your posts give me encouragement to keep going outside. Before I got ill I spent every spare second outside, it’s so good for the soul!
Nice to hear about you again Aspen! And thanks that you write about your improvement. It made me happy. 🙂

Before, when I didn't have my red and near-infrared therapy equipment, I felt nausiated and sick and very tired in the sunshine just after a few minutes and also after it a few hours . It took many weeks in the sunshine to improve so, that I didn't have these nasty side effects from being in the sunshine. Nevery time the side effects started a bit later and become a bit milder. Although milder they became much later because I felt sick anyway, if I was too long time in the sun. Now that I have red and NIR light therapy, it only takes a couple of weeks until these symptoms disappear, in Spring. But they do gradually disappear and the time that I can be in the sunshine becomes longer.
 

Johannes

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So....

I made a mistake. I did too much mental work on top of unadequate rest from physical boat repairing, which caused me bad headache and deppression. 😔 So familiar to me. Do you get headache if you do too much?
 

Hopeful2021

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The sun is shinig again 🌞 I have been laying down at the back yard and got already some very mild sun burn. Not really a burn but a bit reddish skin. Like last year, red and NIR light has halped me so that I can have my sunshine with out nausea or other unwanted side-effects. But I noticed that if I am in the sunshine more than 1 hour 30 minutes, I start to feel uncomfortable. But I know that after a few days 1,5 hours become 2 hours and a bit later 2,5 hours and so on, with out feeling uncomfortable. I also noticed that if I am too long in the sunshine, I start to be over stimulated/over energetic and I can't be still just laying in my sofa. I am over achieving. I quess the sunshine is causing some human cells to produce energy...maybe.

My UVB treatment device is not ready. The last month has been quite hard for me. I have been enthusiastic to do things even if I really would have to lay in a bed or a sofa. I have been quite weak and tired. I have injected methylcobalamine to ease my cognitive problems. I reckon the UVB device is ready in a week or two. But I can't use it before autumn because I would quite propably burn my skin with it. Why? Because it would be very hard to estimate the UVB dosage coming from the sun and combine it with very powerfull UVB lamps. It would be dangerous. It is a shame that I have to wait so long to see if it helps. I think that would be around January 2022 earliest. If it doesn't, it may be a time to move closer to equator for winters. I live in Finland, so maybe to Southern parts of Greece or Spain. Some plans have been made.

By the way, I got my first corona shot last friday. The only side-effect was sore arm. I have sometimes had the same effect from normal seasonal flew vaccine. I had Phizer-Biontec vaccination. My wife got it too. Her arm wasn't sore but the spot where they injected it was a bit sore. These side-efect disappeared in a couple of days. The next shot is in July. I was a bit affraid to take the shot because I had been feeling so weak and tired for so long. But I wanted to do it becase my wife is a part of a risk group that were among the first to get the injection. I did it for her sake when it was offered.

I am sorry that I couldn't give you better news about my UVB experiment. I hope you all have been safe.

Waiting for summer...
How's your summer starting?
Hope you get some good sunshine this summer.
I've really made progress the past months.
Many days of red light therapy helped.
Must be beautiful time of year there.
 

Johannes

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Thanks for asking @Hopeful2021 . My summer hasn't started as well as I hoped. My vitamin D level is lower than I expected, which has caused me headaches after too much physical and mental stress. Vitamin level will be slowly getting up. Luckily I can both inject and try my new narrow band UVB ligh therapy unit at the same time.

For some reason, this Spring has been quite cold and the sun hasn't been shining as much as in the previous two Springs. I haven't been able to be outside in the sunshine and I still get very tired from physical doing. Therefore, I have been fixing my boat only once this Spring and it seems to take some five days to recover from too much physical work. Last ear I had been there already three times this far and recovered in three days from doing. I am still hopefull. I think I get her floating before the mid summer festival.

Yes, it is starting to be beautifull again. After a long Winter, Trees are having small leaves already and flowers are blooming, thanks to rain that we have had in the past couple of weeks. But it still is quite cold. Hopefully Summer is not that cold.

How have you progressed the last past months?
 
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Johannes

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Vitamin D injection helped with headaches. They are almost gone. I am tired but getting better. I don't need five days to recover anymore. I actually needed seven!! But four seems to be enough for now.

I don't use all my trenght for fixing boat, even if I like it. It is time to plant more summer flowers 🌻🌾⚘ 😎

I had my CFS diagnosis four years ago, after being sick for seven years. Everything else had been tested except tickborne diseases. They didn't look plausable at that time. And still don't, but since we live in an area that has lots of tics and I normally have one or two tics biting me every summer, my doctor decided that it would be time to test them. After an interview, the following test will be taken: Borrelia Elispot (CPDA), CD3/ CD57+ cells (Heparin+EDTA), CoxSackie –Virus Antibodies, Ehrlichia Elispot. It takes 2 to 3 weeks to get the results. Pretty expencive they are. With interview and interpretation including treatment recommendation, about 580 euros which is approximately 700USD! This should be the last test ever, so I desided have these tests. If even one of these microbes live in my body, it could be that it makes me weaker and more tired. Getting rid of a possible microbe could improve my CFS. But I very much doubt that I have borrelia. We'll see...
 
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Johannes

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Yes, these 10 x 100 watts UVB tubes are really powerfull. My maximum time in UVB radiation is 1 minute 40 seconds. Minimal Erythema Dose was exactly two minutes. Unbeleavable! So powerfull compared to 14 x 100 watts UVA pulbs. But it can be explaned by the fact that UVB radiation has a lot higher intensity than UVA.
 
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Johannes

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Sorry about this long post.

I did not have any tick born bacteria or viruses. I quess one would have to be happy because some of those can be pretty nasty and because due to my chemical sensitivity they would be very hard to treat. But this also means that all the possible laboratory tests have now been tested and no other illnesses have been found. This sickness of mine is defenetly CFS. I knew it already. Should I be happy now.... 🤔

It took only four weeks to get so much better. The sun has been shining most of the time when I have worked at the shipyard. At first it took seven days to get rif of that bad fatique and some other symptoms, after first trip to the shipyard. My working time at the beginning was 2 to 3 hours per working day + 2 x 55 minutes driving with my car. This week I have had only one to two resting days between working days and I have worked 5 hour per day + plus driving = 7 hour day. But I have not had enough rest. I recon, I would need three resting days and it would be better if I only worked for four hours.

I am wondering why the susnhine worked so fast this year. I did not have an opportunity to really spent time in the sunshine between March and Aprill. Only a few days. I did use my UVB equipment but only for seven times to find out my dosage and the first trials were only 20 to 60 seconds.

Vitamin D-injections have taken care of my head aches that came if I did too much physical work But my vitamin D level was a lot lower than in last Spring, so it can not be vit.D that caused this. So, the only thing I can think of is my methyl cobalamin injektions, which I have injected now with a proper dosage: 2,5mg every 36 hours.

I know that these injections have their influence on the brain, where they repair broken brain cells fixing their myelin sheath. I have been noticing the effect mostly in my cognitive functions but maybe it does more. It has helped with my problems to concentrate, memory problems, cognitive stress, irritated mood, depression and anxiety, that I know. But our brain has lots more functions and all of them use the brain cells. Maybe methylcobalamin can improve my physical functions through better working nervous system.

In a swedish study they found out that the longer CFS patient had injected methyl cobalamin, the less fatique they had and the better overall health they had. Some of them had been using these injection for more than 15 years continuously. I have injected only since year 2017 and only started to inject around january every year, when my symptoms had turned unbearable. BUT this time, I started injecting around December when I had my first cognitive symptoms and adjusted my dosage in February. Only since February I have had proper dosage first time ever.

I don't know weather I should inject in July and August because in earlier years the sunshine has had the same effect than injections have. This has been noticed also in my homocysteine levels which are indicators for the need of methyl cobalamin. It is the homocysteine in the brain and spine cord fluid that causes the symptoms but there are other chemicals in the brain causing the problems due to high homocysteine. Homocysteine is just a very good indicator. This all is caused by my gene mutation, so not every CFS patient have similar problems.

I hope you all are starting to feel better because of the sunshine. I do too much in order to get my sail boat floating again. In fact, my symptoms are almost unbearable the next day after fixing the boat but they go away too. During this time, the fatique is so bad that I have problems to feel any positive feelings and really enjoy Summer. But fixing the boat is enjoyable. The boat floats this thursday, and after that I can really rest.
 
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Johannes

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This Summer has been weird. I have had more strenght and well being than ever in 10 years. I have been fixing our kitchen for five days a week for two weeks. Appr. six hours a day. And resting a week in between. It has been slow, fun and exshausting. And I have spent lots of time in the sunshine. But with out vitamin D- injections, I have not got the same strenght than with them and I have headache. Also with out methylcobalamin injections I have problems to concentrate. But I don't know which help more with my mental stress and irritative mood. Anyway, I do too much. But everything should be ready in a week. Then I can rest at the sea and in the archibelago, with my wife, who I really love. And our dog. Really rest! It will be nice.

Have a nice Summer and if you are on the other side of the world, have a nice Winter!
 

Johannes

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My recent observations are that I should not use my energy to fix kitchen or any rooms for that matter. I lose the sunshine I NEED for feeling better. It is so strange how much the sunshine efects on me. But I am glad I did it. I don't have to do anything to that apartment for at least ten years and it looks so nice. 😊

Here a photo from a week ago... View attachment OI000194.JPG
 

Aspen

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Thanks for all the updates, @Johannes !

Do you get headache if you do too much?
I’ve found that I get a headache the instant I do too much cognitive work. The coathanger headache, where the pain is all down my neck and shoulders. I’ve learned to stop doing everything as soon as I feel a hint that it’s developing. Very annoying, to stop in the middle of something I’m enjoying, but it seems to really help my stamina overall if I don’t push into PEM.

It’s so great that you’ve been able to enjoy working on the boat and in the apartment. You’re not afraid that doing too much will cause your health to deteriorate over time? It sounds like you trust your body’s ability to recover from PEM. I’ve had a few experiences where too many days of PEM cause months of very severe illness where I’m unable to recover, so I’ve stopped trying to push it. Hoping that taking it slow will help me recover faster.
 

Johannes

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The coathanger headache, where the pain is all down my neck and shoulders. I’ve learned to stop doing everything as soon as I feel a hint that it’s developing.
So familiar, except that I get my headache hours later, when there is nothing I can do to it. Then, all I can do is rest. I have pain in the neck too. The muscles in my neck become very tense. I think that the pain in my neck comes from my spinal disk herniation which I had more than 10 years ago but it did't heal properly.


You’re not afraid that doing too much will cause your health to deteriorate over time? It sounds like you trust your body’s ability to recover from PEM. I’ve had a few experiences where too many days of PEM cause months of very severe illness where I’m unable to recover, so I’ve stopped trying to push it. Hoping that taking it slow will help me recover faster.
I do get very tired if I over do it. I am not affraid because I now mostly know the limits of my body and brain during summer time. And because I know that I recover if I don't over-do over certain limit. I say mostly, because this summer I did too much which caused me lots of problems. But during winter I have bad problems with PEM.

I actually had PEM only twice between Aprill and September. It may also be that my PEM is different in nature during summer. It may be so mild that I don't recognize it as PEM anymore. My PEM has been rare since two things happened: my vitamin D level rose up to where it is now and since I realized I need to be in sunshine a lot.

I was very weak for 1,5 years, after 6 months work trial around year 2014. This actually happened twice: 2012 and 2014. I was really sick. But it wasn't PEM. It was total exshaustion. During which I had lots of PEM. :(

My ques is that if I would have one whole summer without over doing, I could feel healthy. Healthy but not healed, not well, because I could not do almost anything. Now I can do something and feel most of the time quite tired but happy. This is my choise. Maybe a bad choise too for the long run.
 

Johannes

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Sailing season is over. The boat stands still in the water to the end of the month. I am changing toilet and doing other repairs. It is better this way. If I leave all maintenance to Spring, I will be so tired until the end of July. I have more energy on autumns, so I want to do it this way. And the boat is closer to my home now. It takes 55 minutes to drive to winter docking and 25 minutes to summer jetty.

I am so sad that Summer ends because there is again that chance that I will be bed ridden from January untill May. But I hope that my new UVB treatment helps.
 

Johannes

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I will have my vitamin D level measured on this monday and then my UVB phototherapy starts. One treatment every two days for three months and then I will have my vit D messured again. 1 minute 30 seconds each side, front and back. And after that red and NIR therapy for 10 minutes each side, together with green and blue light. I should know by Christmas if this does or doesn't give me more energy. But it should atleast provide me all the vitamin D I need without injecting it to my self.
 

Johannes

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My vit D level was 245nmol/liter, so clearly the amount of the sunshine has an effect on it as well as on my energy. It seems that UVB treatment is not as effective as the real sunshine. But well see more on the long run. At the end of January latest. I am slightly optimistic but...