Selenium helped me a lot (remission?), but I still can't exercise...

[JohnnyMinnesota99]

Hello everybody,


I have been a member of this forum for some months now, and I would like to say thank you very much to all of you. Due to the phoenix rising members ( in particular through the knowledge and kindness of @Hip ) I have been able to understand better what's going on in my body. As a matter of fact, I didn't know why I had been feeling so bad for three years after a severe viral infection in June 2016. Last September, I could leave the black box of assumptions and speculations as I was to realise that my CFS problems are linked to a chronic infection with Coxsackie B5 (in all probability). The first real diagnosis was attained through a "Neutralisation Test" at IMD lab Germany (IgG for CVB5 at 1:320).

Hoping that my post might help someone, I'd like to report that the intake of 400 to 800 mcg selenium per day helps me! Since I have elevated antibody levels of CVB5, I took sodium selenite, and I can tell that after 10 to 14 days, I started feeling better. My recovery continued so that after some weeks I felt pretty good. On the best days, I was a pretty good 8.5 out of 10 points in regards to the CFS scale. So far I have been reluctant to take Oxymatrine, but sodium selenite helps very well. I would even say that I am able to live a normal life, which is fantastic.

There is, however, something that is still frustrating me. Being ambitious and eager, I developed the plan to start exercising. The first 20- to 25-minute-training sessions on my exercise bike went pretty well. The session of 36 minutes, however, did not went well. I mean, it did since I could finish the session without any problem, actually without becoming too exhausted, but three to four days later I developed symptoms again :-( I started having limb pain in the back and also in the arms, felt tired, experienced a headache, I even felt some sort of a sore throat. All those symptoms were not so strong that I had to call in sick at work. I was able to pursue my profession as a teacher, but it took three or four days before the symptoms disappeared. I tried exercising once again, same consequence: I felt CFS symptoms.

Now I don’t know what to do. I think I could live a normal life, daily taking sodium selenite, but I’m sceptical when it comes to doing sport, which is hard for me. For four years, it has been my big dream to exercise again…. Today, I am feeling CFS the symptoms that started onSunday afternoon… :-/

Do you think taking Oxymatrine could be worth a try? So far I have been reluctant since I’m frightened that my symptoms might deteriorate. In fact, I wanted to start Oxymatrine and took one pill (then stopped). Two days after that I developed CFS symptoms. First I thought it could be another infection, but later on I realised it might have been the start of a healing process.

If you have made any experiences similar to mine or if you have ever taken Oxymatrine, I will be please to read your answers. Feel free to post or contact me when you have a questions.



My conclusion: Sodium selenite at a high dosage can have a very positive impact on CFS. In fact, it helped me a lot!!! Be careful with your stomach, but in general it is my impression that selenium can be tolerated quite well!



Best wishes to all of you! Thank you very much for your great help. I really appreciate your helpfulness and empathy! Take good care of yourselves and never stop hoping!!



Johnny Minnesota / Chris

 

[Wishful]

I'd say that selenium works for you for some of your symptoms; symptoms that are downstream from the core ME dysfunction. Enjoy the improvement in your quality of life, rather than being disappointed that it isn't a full cure for ME. Many PWME would be thrilled to have a 'fairly normal' day even if it was without a proper workout.

I suggest trying to figure out what your exercise limits are. Maybe you can manage 22 minutes of cycling without triggering worsening. Maybe only 7 minutes, but maybe that would increase gradually. The dreams of Olympic-level activities will have to wait for a true cure for ME.


BTW, I think most of us fall prey to the "I feel a bit better today. I'll do something strenuous! Ooops. " pattern.

... Sometimes repeatedly. Feeling even a little bit better seems to knock out our judgement.

 

[Hip]

Glad that selenium is working for you, @JohnnyMinnesota99.

If anyone is interested in trying high-dose selenium to see if it improves their ME/CFS, the original thread is here.

In my case, I would say selenium took me up half a level on the 3-level ME/CFS scale of: mild, moderate and severe. Which is quite a large improvement from just a simple supplement.

I use 400 mcg daily of the methylselenocysteine form of selenium. Swanson sell an inexpensive methylselenocysteine supplement. You can buy it here.

 

[Davsey27]

Hello everybody,


I have been a member of this forum for some months now, and I would like to say thank you very much to all of you. Due to the phoenix rising members ( in particular through the knowledge and kindness of @Hip ) I have been able to understand better what's going on in my body. As a matter of fact, I didn't know why I had been feeling so bad for three years after a severe viral infection in June 2016. Last September, I could leave the black box of assumptions and speculations as I was to realise that my CFS problems are linked to a chronic infection with Coxsackie B5 (in all probability). The first real diagnosis was attained through a "Neutralisation Test" at IMD lab Germany (IgG for CVB5 at 1:320).

Hoping that my post might help someone, I'd like to report that the intake of 400 to 800 mcg selenium per day help me! Since I have elevated antibody levels of CVB5, I took sodium selenite, and I can tell that after 10 to 14 days, I started feeling better. My recovery continued so that after some weeks I felt pretty good. On the best days, I was a pretty good 8.5 out of 10 points in regards to the CFS scale. So far I have been reluctant to take Oxymatrine, but sodium selenite helps very well. I would even say that I am able to live a normal life, which is fantastic.
There is, however, something that is still frustrating me. Being ambitious and eager, I developed the plan to start exercising. The first 20- to 25-minute-training sessions on my exercise bike went pretty well. The session of 36 minutes, however, did not went well. I mean, it did since I could finish the session without any problem, actually without becoming too exhausted, but three to four days later I developed symptoms again :-( I started having limb pain in the back and also in the arms, felt tired, experienced a headache, I even felt some sort of a sore throat. All those symptoms were not so strong that I had to call in sick at work. I was able to pursue my profession as a teacher, but it took three or four days before the symptoms disappeared. I tried exercising once again, same consequence: I felt CFS symptoms.

Now I don’t know what to do. I think I could live a normal life, daily taking sodium selenite, but I’m sceptical when it comes to doing sport, which is hard for me. For four years, it has been my big dream to exercise again…. Today, I am feeling CFS the symptoms that started onSunday afternoon… :-/

Do you think taking Oxymatrine could be worth a try? So far I have been reluctant since I’m frightened that my symptoms might deteriorate. In fact, I wanted to start Oxymatrine and took one pill (then stopped). Two days after that I developed CFS symptoms. First I thought it could be another infection, but later on I realised it might have been the start of a healing process.

If you have made any experiences similar to mine or if you have ever taken Oxymatrine, I will be please to read your answers. Feel free to post or contact me when you have a questions.



My conclusion: Sodium selenite at a high dosage can have a very positive impact on CFS. In fact, it helped me a lot!!! Be careful with your stomach, but in general it is my impression that selenium can be tolerated quite well!



Best wishes to all of you! Thank you very much for your great help. I really appreciate your helpfulness and empathy! Take good care of yourselves and never stop hoping!!



Johnny Minnesota / Chris

It's always great when you find something that works

Congratulations on that

Also perhaps consider takiimg it easy on the exercise.I know when one has the energy it is tempting.It can lead to setbacks if you overdue which sometimes happens, so its important if you feel good where you can increase duration do very gradually.

Curious what was your CFS level prior to the selenium?

 

[WayTooSick]

My conclusion: Sodium selenite at a high dosage can have a very positive impact on CFS. In fact, it helped me a lot!!! Be careful with your stomach, but in general it is my impression that selenium can be tolerated quite well!

Can you tell us where you are getting the sodium selenite? I'm having trouble finding sodium selenite specifically, most selenium supplements seem to use other forms

 

[knackers323]

@Hip swansons seems to be sold out.
It is L- methylselenocysteine

This one doesn’t mention being in the L form.
Would it work as good?

https://www.iherb.com/pr/Jarrow-Formulas-Selenium-Synergy-60-Capsules/169

 

[Hip]

@Hip swansons seems to be sold out.
It is L- methylselenocysteine

You can find it elsewhere by a Google search.

Methylselenocysteine is also called Se-methylselenocysteine and L-Se-methylselenocysteine.

https://www.iherb.com/pr/Jarrow-Formulas-Selenium-Synergy-60-Capsules/169

That looks fine. Any form of selenium should work, but some forms like selenomethionine and methylselenocysteine have near 100% bioavailability, whereas the sodium selenate and sodium selenite forms of selenium have only around 50% or so bioavailability, so you may have to take more just to get the same dose.

 

[JohnnyMinnesota99]

Thank you for your kind and wise words...

Well, today I am feeling rather bad. I could work, but after giving some lessons (I am a teacher) I started have a headache. Curiously, I had a tingling sensation in my legs, which is a new experience. It's now gone, but it was curious. On Friday, I exercised 35 minutes on my exercise bike, but I felt good afterwards. In general, I can manage Mondays slightly worse than other days. After the weekend, I start work on Mondays so this might be a special form of strain for my body. Anyway.

Actually, I don't know what my CFS level prior to the Se intake was. In fact, I have not been diagnosed with CFS so far. I reckon I was a 7 on average with worse (6) and better (7,5 or 8) days. With the selenium I felt / feel like a solid 8, maybe even 8.5 I don't have problems working, going our for a walk, having a normal and regular daily life.

I am still trying to find out whether my CFS problems are the effects of a chronic infection (e.g. Coxsackie) or if they refer to a neurological condition. Sometimes, I wonder why doctors have not found out the exact origin of the disease. Does anyone know if Dr. John Chia's theory has been proven with many CFS cases being the victims of chronic infections? Last year I consulted a renowned immunologist in Germany, and he is not perfectly convinced that CFS cases can be chronic Coxsackie infections. I, however, think it is very probable, and Coxsackie is the only disease where I have elevated antibody levels. Many docots, in turn, argue that the height of an antibody level is not relevant, but I think it is... Why would a body keep an antibody level up with a disease long gone. That doesnt' make much sense to me. Admittedly, I am a layperson.



As for the sodium selenite, here are my sources (in German sodium selenite is Natriumselenit):

https://www.herbano.com/de/catalogsearch/result?cat=0&q=natriumselenit (pure sodium selenite)

https://www.sunday.de/natriumselenit-200-mcg-set.html (selenium and sodium selenite)

https://www.biogena.com/de-DE/suchergebnisseite.html?q=natriumselenit (pure sodium selenite)

https://www.heidelberger-chlorella....urenelemente/selen-als-natriumselenit-kapseln (sodium selenite and selenium).

 

[JohnnyMinnesota99]

Once more, I would like to say thank you very much!

And yes, @Wishful, you are right. I should focus on enjoying a state of health which is okay and much better than many CFS patients. Of course, I do not want to feel better since other people might feel worse, it's just that I should realise the good things in my life, but that's what er humans beings are like: We always want more, even when it comes to basic desires like health. I mean, it's nothing bad that I would like to keep improving, but things seem complicated. I don't know what to do. Keep things as they are or try to improve my condition by start an oxamatrine cure. @Judee gave me very interesting and smart insights - many thanks for that!

It's great that a normal dietary mineral like selenium can help people. @Hip and I have been able to realise it... Thank you so much!

 

[JohnnyMinnesota99]

Hello everybody,

Here is some news on my personal development / recovery:

I (in all probability have had a chronic Coxsackie infection with CVB5 for four years) started taking Oxymatrine three weeks ago. So far I have not felt any fevers or other strong symptoms, but every now and then I felt a bit of a limb pain as well as a headache. Sometimes I woke up in the morning, feeling like I had sweated before. In general, I feel good, sometimes okay, but also really good. I think that, on average, I am a 8 or even 8.5 on the CFS scale. This is awesome, of course. Becoming a 9 or even 10 remains to be seen, but I will never be pretentious and focus on the good things of my recovery instead. After my severe infection in June 2016, I was a 4 at first, then slowly developed into a 6, then a 7 and then stuck at 7 or 7.5/8.

My protocol so far:

Selenium in the form of sodium selenite: 600 mcg per day for 4 months now

1 vitamin d pill of 5,400 LU every five days for 4 years now

1 multivitamin pill every day for 3 years now

Oxymatrine:
1/2 tablet for 2 days
1 tablet for 6 days
2 tablets for 7 days
3 tablets for 6 days so far
I will start taking 4 tablets after 7 or 8 days of 2 tablet.
Side effects: None, except for the fact that I am sensing my allergy to pollen more strongly. That seams self-evident since the Oxymatrine boosts the immune system.

However, I was to realise one the side effects of selenium: At the moment, I am feeling the scent of garlic on my nose. So I quit taking sodium selenite yesterday and will only continue after three or four days, probably at a dose of 300 or 400 mc per day. That level is said to be perfectly safe.

Given the fact that I will reduce my se intake, what could I take instead? According to this list, there are quite a few supplements that work as antiviral agents against CVB:

What would you recommend? Selenium helped me a lot!!
https://forums.phoenixrising.me/threads/enteroviruses-revisted.14478/

Best regards and all the best to all of you!!!

Johnny

 

[Hip]

However, I was to realise one the side effects of selenium: At the moment, I am feeling the scent of garlic on my nose. So I quit taking sodium selenite yesterday and will only continue after three or four days, probably at a dose of 300 or 400 mc per day. That level is said to be perfectly safe.

You might like to try more bioavailable forms of selenium like selenomethionine or methylselenocysteine instead of sodium selenite.

 

[JohnnyMinnesota99]

Good point, but with me it's CVB5, and this one is best fought with sodium selenite. Is that right?

 

[Hip]

Good point, but with me it's CVB5, and this one is best fought with sodium selenite. Is that right?

I don't think so, because by a calculation I performed, you would need to take enormous doses of sodium selenite to achieve an antiviral effect for CVB5 in vivo. Doses so large that they might kill you. The doses you are taking will have no antiviral effect for CVB5.

When in vitro antiviral tests are done, they often use very hig concentrations of a substance; but these same concentrations cannot be achieve in vivo, when you take the substance orally. Many supplements show potent antiviral effects in vitro, but usually they are not effective in vivo.

 

[JohnnyMinnesota99]

Good point, and thank your very much for your insights. Well, by experience, I would say that sodium selenite helped me! So, there should be an antiviral effect, shouldn't it?

 

[Hip]

Well, by experience, I would say that sodium selenite helped me! So, there should be an antiviral effect, shouldn't it?

Yes possibly, but the same effect may be obtainable with other forms of selenium.

 

[JohnnyMinnesota99]

I see, many thanks

 

[JohnnyMinnesota99]

@Hip

Do you have any experience (or do you know anybody) in regard to horny goat weed? The supplement is said to work as an antiviral agent against CVB as well...

 

[Hip]

Do you have any experience (or do you know anybody) in regard to horny goat weed? The supplement is said to work as an antiviral agent against CVB as well...

There are dozens of supplements which have potent antiviral effects against enterovirus in vitro. I listed many of them here. However, unfortunately you nearly always find that they are very weak antivirals in vivo, for the reasons explained above.

Even oxymatrine, which is a potent antiviral for enterovirus in vitro, has pretty much zero antiviral in vivo (however, oxymatrine is also an immunomodulator, so fights viruses by stimulating the immune response, which is different to being an antiviral).

 

[JES]

I did a lot of trial and error with the antiviral (or rather immune modulating) approach a couple of years ago, so here are some things from the list of @Hip, which I felt were promising, or have noted down for whatever reason:

- Fluoxetine, 10 mg, relatively easy to obtain medication, has some evidence of being antiviral in vivo in the brain, probably not much elsewhere at standard dosages. No benefits for me, but I haven't performed the most sensitive coxsackievirus tests to know if I have a chronic infection.
- Dihydroquercetin. This was used by Dr. Chia a couple of years ago, so it has some anecdotal evidence behind it. A bit hard to find, but it's classified as nutritional supplement and at least Swansons should sell it under the label "Russian Rejuvenator".
- Astragalus. Good general immune stimulator, saw some benefit from this when I struggled with some form of myocarditis several years ago.
- Chinese skullcap. A forum member recently had success with it here.

 

[JohnnyMinnesota99]

Thank you, @Hip and @JES!

JES, do you maybe know what the cause of MFS's CFS/ME was? Is he/she also a case of a chronic coxsackie infection? How about you? If Chinese skullcap potentially fights a coxsackie virus infection, then I ought to give it a try...