High-dose manganese: could it be an effective treatment for ME/CFS? (Ron Davis Research)

[wabi-sabi]

if anyone wants to try it out, the tea is Tetley English Breakfast.

I love this tea too! Your reaction to it sounds more like a positive reaction to the just right amount of caffeine than it does to manganese. Do you get this reaction to the decaf version? Do you get this reaction to hazelnuts, which have loads of manganese?

Caffeine in tea or coffee always gives me a nice energy boost. It's a gentle laxative as well. It will raise your BP too just a bit helping with orthostatic issues. So overall, in small amounts, it can be quite helpful.

 

[kula]

I love this tea too! Your reaction to it sounds more like a positive reaction to the just right amount of caffeine than it does to manganese. Do you get this reaction to the decaf version? Do you get this reaction to hazelnuts, which have loads of manganese?

Caffeine in tea or coffee always gives me a nice energy boost. It's a gentle laxative as well. It will raise your BP too just a bit helping with orthostatic issues. So overall, in small amounts, it can be quite helpful.

Yes, I think the caffeine helps for sure! Unfortunately, I have not been able to drink coffee at all these last few months. There have been several times in my life where coffee made me feel really good (I don't remember how I got there, but I think it depended on the supplements I was on), but most of the time, coffee has remained a treat that I can tolerate in small quantities only. I've found that coffee greatly triggers my "liver fire" and worsens the liver congestion that I think I have.

Thinking about the tea, I think it may also contain some trace minerals that I can't seem to identify. Possibly zinc and/or copper? Maybe it's the right combination for me. I haven't tried hazelnuts since it's something I rarely eat, but I will be sure to see if I get any reactions next time!

 

[Alvin2]

Phase one has been achieved, i have acquired the Manganese which was a difficult task.
Phase two of testing it will come once my PEM from today passes (way overdid it).

 

[lateM98]

Honestly all evidence are against taking manganese. Spontaneous manganese deficiency has never being observed in humans, or rodent for that matter. Few manganese depletion trials failed to observe any effect, and manganese-requiring metabolism-relevant enzymes can easily substitute magnesium for manganese. Even in people with generically driven manganese deficiency the only observed effect is defect in a certain kind of post-translational modifications. I could elaborate more and post links but if I have CFS...

 

[crowquill]

Honestly all evidence are against taking manganese. Spontaneous manganese deficiency has never being observed in humans, or rodent for that matter. Few manganese depletion trials failed to observe any effect, and manganese-requiring metabolism-relevant enzymes can easily substitute magnesium for manganese. Even in people with generically driven manganese deficiency the only observed effect is defect in a certain kind of post-translational modifications. I could elaborate more and post links but if I have CFS...

I guess if Ron Davis is finding low levels of Mn in ME patients it is not so much spontaneously developed but a potential part of the disease process.

It seems to me that a short-term trial of manganese should be relatively harmless for the majority of people.

On the back of Ron's finding I started supplementing with Pure Encapsulations 8mg Mn per day and am finding it helpful. It probably should be stated, however, that Ron himself did advise against supplementation with Mn and Selenium (which he also found low levels of in PwME) until he has investigated further.

Andy

 

[kula]

I am reporting back with an update on manganese.

I used to take half a tab of 25mg manganese chelate 2-3x a week and I didn't feel any different. I wasn't totally sure if I was deficient so eventually I stopped due to fear of taking too much. I started using maple syrup liberally in my tea, coffee, and desserts in hopes that the naturally occurring manganese will be safer.

I got sick at Christmas and then got totally wiped out in early January from the flu. I got through it quickly this time (only 1 week) but just couldn't fully recover. My digestion became extra sluggish and I was constipated for 2 weeks. I also gradually returned to work after being off for a year for illness and I found it unbearably tiring, like I was literally nodding off and falling asleep during a mere 4 hour shift. I initially blamed it on anxiety that caused insomnia, but when it was still happening after getting a decent amount of sleep, I was very worried that this was going to be the rest of my life and I desperately starting looking for answers.

I spent the next night staying up and doing a ton of reading and decided that I should give manganese a try again. I took a 25mg tab and went to bed at 6am and woke up at 10am. Instead of being deathly tired, I experienced incredible mental clarity. Apparently it's a cofactor for thiamine, which I was taking pretty high doses of, but got lazy during the weeks where I was sick. I immediately went back to 200mg of Thiamine HCl TID and 80mg benfotiamine BID while continuing the manganese 25mg once daily along with my usual supplements. I've been running on 4-5h of sleep and have never felt so awake, wow! I spent my life wondering if I had a learning disability but now I can read and comprehend without my mind drifting off.

I also added some zinc and alpha lipoic acid a few days ago and haven't experienced any adverse effects yet. Hopefully the zinc will help my digestion further (I have started to feel hungry these last 2 days and the fullness in my stomach seems to have moved along) and ALA to further support the thiamine.

Hope this helps

 

[Viala]

I am currently taking 20mg daily and so far I haven't noticed any bigger difference in fatigue or mental clarity, but manganese is definitely doing something so I will continue. I read that higher doses of zinc may cause problems with absorption of manganese, so anyone supplementing with more than 15mg zinc daily may want to test lowering that dose to enable manganese to do it's job.

 

[Judee]

I haven't read the whole thread. Originally I started to when it first was posted but back then there was only one page so anyway, I don't know if this was addressed by another member here. I apologize if it was.

So today on another site I was reading how people with problems with the sulfuration and Glutathionine Synthesis pathways have excess ammonia buildup which I've always believed pwME deal with.

A third site said that manganese is necessary for clearing ammonia so this low-manganese finding makes sense if our bodies are always trying to clear excess amounts of ammonia with it.

Anyway, just a thought.

 

[Wayne]

A third site said that manganese is necessary for clearing ammonia

Hi @Judee -- I seem to recall reading many years ago that certain types of detox baths can clear ammonia from our bodies. I even seem to recall that a person can smell the ammonia coming out of the body while sitting in the detox bath. I can't recall if various types of saunas can do the same. Have you ever heard of anything like this. BTW, I plan to invest in an ozone sauna in the next few weeks, one where you can lay down in relatively small chamber, but still have the head outside the chamber.

 

[Consul]

I really like the nitrogen hypothesis because there are findings of increased protein breakdown for energy and decreased urea cycle. So it becomes a question of mass balance, where has the nitrogen gone. Doesnt necessarily have to be ammonia though since nitrogen can form various toxic compounds in the body.

Also there was the gwas study that found signal in women for ORNT1, ornithine transporter. Ornithine is a member of the urea cycle.

Lipkin also found some minor indications for this theory in his peroxisome paper.

 

[Judee]

I seem to recall reading many years ago that certain types of detox baths can clear ammonia from our bodies. I even seem to recall that a person can smell the ammonia coming out of the body

No, I hadn't heard of that. I'll have to try and look it up to see what they used to detox with.

I plan to invest in an ozone sauna

Please let us know how it goes.

Also there was the gwas study that found signal in women for ORNT1, ornithine transporter. Ornithine is a member of the urea cycle.

Do you remember what it said about ORNT1 and also was it more prevalent in women or was that just the group they happened to study?

Edit: I think I may have found what you were talking about on this site/page: https://mecfsresearchreview.me/2018...on-of-dna-variants-with-self-reported-me-cfs/

 

[Nosferatu80]

I am currently taking 20mg daily and so far I haven't noticed any bigger difference in fatigue or mental clarity, but manganese is definitely doing something so I will continue. I read that higher doses of zinc may cause problems with absorption of manganese, so anyone supplementing with more than 15mg zinc daily may want to test lowering that dose to enable manganese to do it's job.

NAC also deplete it, more one mineral to check lol. Does manganese have anything to do with histamine intolerance too?