low manganese diet - further serious effect of Mn has been confirmed

Snowdrop

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Obviously I have nothing to say regarding the book you highlight @pamojja since I don't know anything about it. Except I can say this. The title talks about Cancer. Cancer is not a monolithic thing. It is coming to light that cancers are very different from each other. So I am left wondering how a uniform treatment for (what I presume is) all cancers can be a thing.

I will suggest though that in promoting the idea of cures through these methods there is a slippery slope.

A few thoughts come to mind. Will these treatments then only be available to those with a lot of disposable income and who have a network of people who can help them implement the treatments?

Will this kind of explanation for how to fix illness come (over time) with a moral component that somehow it is us who made ourselves sick? Or if we can't implement all of the components (or any) will it be our fault we do not get well?

Given that there is no good mainstream medical treatment (and given that diagnosis is a difficulty/barrier) is it our best option to experiment on ourselves or to support advocacy in bringing awareness to ME as biological and support biomed research efforts? Especially as some supplements (or higher doses of) could result in adverse health outcomes. People are generally optimistic and hopeful. There is a tendency toward bias against believing that something might actually harm rather than help.

I can say with (not certainty) but with the strong possibility that this has happened to me. I waited years to try a particular supplement that I had been reading was getting good reviews. Taking it coincided with becoming permanently (so far) less well.

I would tend to be careful about things that have no controlled high quality studies. The treatments may have some good in the mix but it really isn't a matter of fact but of uncertainty mixed with hope and positive belief (bias). And it leaves everyone in the position of reinventing the wheel with regards to what might work for them or not. And that's provided that they can follow the various arguments/research for trialing these things which narrows the field of people down quite a lot.

In the end I want to see a treatment that all people with ME can have access to.
 

pamojja

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All good points you raise. Still, just as in my case with PAD - if one doesn't want to follows the high risk/low benefit interventions of main-stream medicine - one is left alone and has to figure it out oneself.

Will this kind of explanation for how to fix illness come (over time) with a moral component that somehow it is us who made ourselves sick? Or if we can't implement all of the components (or any) will it be our fault we do not get well?
I think guilt and fault only makes sense for an outside person who wants to blame. For the person affected of a deathly disease smoldering about one's DNA or epigenetics being one's own fault is not really helping anyone either. Personally I don't see any beneficial use in blaming at all.

Will these treatments then only be available to those with a lot of disposable income and who have a network of people who can help them implement the treatments?
Think that is already the status quo. Either one has an insurance covering, or one hasn't. However, theses self-treatments strongly depend on self-directed care, which is an even more insurmountable obstacle for a majority of patients to implement. As you also commented.

I can say with (not certainty) but with the strong possibility that this has happened to me. I waited years to try a particular supplement that I had been reading was getting good reviews. Taking it coincided with becoming permanently (so far) less well.
Very unfortunate this happened to you. However, there is always the risk of a disease worsening - with conventional medicine much more than natural substances.

In the end I want to see a treatment that all people with ME can have access to.
Me too. However, if it turns out as mostly ineffective as with the biggest killers cancer and CVD, I see no choice than to do without.
 

Snowdrop

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Well, we all do what we have to to try and make this bearable. For me, I'm putting my efforts into awareness so that more researchers might start to get interested and Dr's get educated etc. And I consider it a synergistic thing. The more people in the community that speak up the more we're listened to and things start to change.

I understand entirely the desperation to want to gain some semblance of functioning but after many years I start to see some of the pitfalls when trying or recommending things. Even things that work have drawbacks. D-ribose gives some small energy gain but regular use or too high a dose mean I will not be able to sleep.
 

percyval577

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To answere the question I´ll give a description of the improvement I am going through
since 2 years and 8 months. There are clear indicators.
First off I thought my particular improvement would be unimportant over:
  • The pure possibilty that it could be epigenetic change implies some urge for everybody who has not figured out any other (single) cause that would apply for him. Or am I foolish? Its your responsibility, the more you wait to pay whatever an attention the longer and the more difficult it might get to reverse. If this possibilty is a reality in anybodies case I don´t know. Nobody knows.
  • Everything in this guess (this theory) I have made sticks well together. Or are there any inconsistencies? (And there are evidences enough for single points.) Therefore it could be often a cause. Or am I stupid? I can´t be afraid of any outcome, its your responsibility.

My slow improvement is indicated by:

  • I sleep well right since I have begun.
  • Sexuality has come back and grows stronger (though still in chaotic fluctations when looked at in short time frames)
  • The very strong missfeelings in the legs are now often almost absent (but still come back even quit strong, the fluctuation reaches now good spots)
  • When I first had drunken beer again after 5 years it hadn´t any medical effect. But then it had for almost 2 years. Now again beer has a bad effect. There seems to be a developement in somethings quantity, nowadays I even can´t drink beer when I have ridden bike, which was still of good effect one month ago. This feeling of disturbtion I know by earlier times when I was in my twenties (and not that ill).
  • After half a year I got heart and bloodpressure problems. They vanished after three months and came back only to very low degree.
  • In between I got pem very suddenly after say two hours and related only to the sort of act I have done. It lasted for at least ten days. This is going to vanish now in respect of simple acts, I can ride bike long distances at least two times a week without much badness (it may be due to nickel, who knows).
  • Sometimes now suddenly the eyes get foccussed, my voice turns full.
  • Hands and feet are not that cold anymore, or even warm. The beard is becoming stronger.
  • I don´t watch tv anymore, which I didn´t like to do as well in my life before I got such ill.
  • The tinnitus got higher: from g to bb to eb to g. This happend as well in a first recovery when it finally vanished completly.
The most clear aspects are that I feel my enviroment, the nice wind here for example, I enjoy to move. This might be explained psychologicaly but in view of the other effects one shouldn´t do so. It´s true that I cannot think in a normal speed, I am very very slow now as I ve been never before, missing short termed points, and I do to less and to much at the same time, with sudden missconnections. Sometimes I look like a ghost. I feel somehow lonly now (but still lacking constance in being able to speak with sense). I hadn´t had the capacity to feel lonly before. Now its even an issue that doctors don´t want to understand propperly (or that they are to stupid, or no time?), what has been without importance before.
I had recovered to some extent a first time - only strong missfeelings in the legs had left - in 2009/2010. I relapsed from chickenpeas and beans (as well as I got worse by peas and beans after ebv in 2001). So I know even better what I feel and what the train is calling for.


Its´s a long time frame. I dont tell about any success that would occure only in a short time frame.
 
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percyval577

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I googled <<ME/CFS Manganese>> and was led to this forum. I quote the first experiences.
Contra: 4 ---- Pro: 1
BTW, it seems that we are low on manganese!

CONTRA manganese​
manganese-not-magnesium-and-pain
I want to let you all know what happened to me when I tried manganese, in case it helps someone, and also to see if any of you have insights.

I started with 12.5mg (1/4 of a solaray capsule). That day I had a massage, and I just could not get comfortable. Everything felt like too much pressure, or not the right angle. But that happens sometimes with massage. That night, I was up for several hours trying to get comfortable. Again, this happens to me pretty often. I have a lot of pain. OTOH, insomnia can present as 'too much pain -- can't get comfortable' for me, if I am not sleepy enough to sleep through the pain. Just in case, I took no mn for a few days, and I slept fine.

I tried it again yesterday, this time with 6mg. Last night, again problems with pain. And in a weird way. Little oddities of position, or stretching my arm a bit too far, caused a surprising amount of burning pain, that took a long time to fade (like 30 minutes). But my usual background pain was not elevated. Other kinds of discomfort seemed to be affected too -- for example, when my nose was running and I sniffed to clear the passages, the relief was exaggerated.

I know manganese can cause neurological problems, so I do not plan on taking any more!


my-manganese-experiment
I wanted to relate my experience with manganese. On hair analysis it is generally quite low (not even in the normal range). I had tried taking it maybe 6 months ago, had a bad reaction but couldn't quite remember what it was, so I restarted it maybe 2 weeks ago. I have trouble with one of my knees and it's supposed to help with ligaments etc. A couple of days ago, I had unexplained rather severe fatigue - it was not due to crashing or PEM or detoxing, the usual things. I could not figure it out, and finally went through all my supplements to see what I was doing different, and the only thing I came up with was the manganese (I was taking 20 mg.)

I did a little research and found that if one is low in iron, manganese will actually get absorbed at a higher rate, preventing iron absorption. And I had a faint recollection of possible low iron. I found a hair analysis from last year, and sure enough my iron was at the bottom of the normal range, although manganese didn't even make it into the normal range.

Anyways I had had 2 bad days of extra fatigue so stopped the manganese and sure enough, today my energy has started coming back! I think I have been so focused on folate and B12 and magnesium and potassium, that plain old iron got overlooked and my doctor never pointed it out to me. I do try to look at all my tests results now because doctors overlook a lot, but this one got past me. So am probably going to start an iron supplement too.

I still think I need the manganese, but should get my iron levels up before adding it in. In any event, I now know why I stopped the manganese before, but I didn't discover at that time why it made me feel so bad.


need-a-manganese-for-dummies-guide-why-am-i-wired
Since last summer, I have on occasion tried taking manganese (not magnesium) - and was surprised with the results.

I first took it last summer because I have very loose ligaments (noted by several healthcare practitioners), and read that manganese is needed for ligament health. I got WIRED, by the next day. A dramatic different in energy (I do not have ME/CFS, but do often have moderately low energy, along with POTS and other odd things). This wiredness was not the "tired but wired" thing people talk about, I had that years ago, and know what that feels like. Nope, this was straight up "give me all your chores I'll do them for you" wired. I had to take benadryl to sleep at night during these wired days.

Not making the connection last summer, I had continued the manganese for about a week. I spent most of that week last summer trying to figure out if some change in diet had caused the wiredness (long term candida sufferer, I tend to blame diet too quickly for feeling bad). After I stopped the manganese, the wiredness took days to dissipate.

Since then, every few months I've tried it again. Usually the same results. Why only "usually" - well, the one thing that might prevent the wiredness from happening from the manganese is if I eat sulfited foods in excess (dried apricots, in my case). I just noticed that this week.


what-role-does-manganese-play-in-mitochondrial-function
I recently had serum levels tested and they were low and but I'm unable to tolerate supplementation. It causes severe problems with my stomach and esophagus even when bypassing the gut (transdermal). I have eosinophilic esophagitis and MCAS and my stomach and esophagus are by far my sickest organs ...


does-manganese-detox-on-its-own
I've been having a bit of allergy symptoms lately, so was reading the Mast Cell thread in which someone said that 30mg manganese helped them lower histamine. I know better than to start with full doses of anything, but did so anyway last night and took 30mg of manganese.

I actually felt pretty good last night and calm save for some mild insomnia, but nothing bad, and a sore throat. Today, though, the sore throat continues, along with severe agitation that's been cycling rapidly with depressive thoughts.

I do have increased mental and physical energy as positives but along with the negative emotional instability.
[->]
Of course I will not take any for a while and I'm sure these symptoms will die down as this has happened before with other supplements, but can anyone offer suggestion as to why it caused an initial increase in function but then the emotional instability?

I also have some acne on my face since last night. If it is "detox", could it be dealing with ammonia?

PRO​
improvement-on-manganese
I've had an improvement in energy, sleep cycle and well being with manganese only supplementation. But I have developed a dry itchy rash on both back hands that starts at the knuckles and finishes 2 inches into the wrist. Is this possibly some kind of detox? Iron or copper maybe?

Oh and I've also broken out with some acne on the forehead which is pretty unusual for me.. I usually only get one zit at a time and I've had 5 pop up...
 
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Learner1

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Manganese is used in Mn-SOD in the mitochondria, which is used to defang superoxide radicals made by the mitochondria in the process of ATP production.

If enough Mn-SOD isn't available, the superoxide radicals will combine with NO to make peroxynitrites which impair mito complexes and the electron transport chain and will damage the mitichondrial membranes making them less efficient. Which means less ATP production. Less ATP production means everything in your body works less well and serious health problems result.

My labs show I tend to run short of manganese, which can cause serious problems, so I supplement it in small amounts. I think I'll leave the low manganese diet to you.
 

percyval577

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It´s your responsibility bothway.

Of course I cannot say that my theory would apply for a certain percentage of us. (This needed to be evaluated empirically.)

But everything sticks nicely together. Even if it is "unusual" or strange. (remember, I rely on findings)

Btw: For the most medicals it´s not known, why they work - such far has research come.

(Dont get me wrong: without research and doctors I would be already dead - but the most is still to find out.)
 
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Learner1

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Er....everyone has mitochondria. And those of us with ME/CFS tend to have problems making ATP.

Perhaps testing for RBC manganese or doing a NutrEval test to know one's status might be wise. Then one would know if one needed a low manganese diet, or cinverseky, to supplement manganese.

The wrong amount of minerals can be very bad, even deadly. Its not something to guess about or act upon random internet theories.
 

percyval577

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I like to read your (of course internet) posts, but this is not a reply.

Everybody might easily overestimate how far science has come (including some selfconfident doctors).

You need to look for whole pictures, and seldom you may have some little luck.

I do have a reply to #26. Fasten your seatbelts (but it´s not new rather).
My horizon is still normal and my intuition is still working,
only the ways inside are turmoiled from me/cfs. Finally I will get it.
Hope to see your tommorrow.
 
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pamojja

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Contra: 4 ---- Pro: 1
BTW, it seems that we are low on manganese!
12.5mg, 20mg, 30mg per day of manganese in the 'contra' experiences. I'm absolutely not surprised by the negative experiences on such high doses of manganese.

I always kept my supplemental intake below 2mg when starting with Linus Pauling therapy 9 years ago, and fared well with that approach:

http://practicingmedicinewithoutalicense.com/protocol/excerpt_chp7.pdf

Along these same lines, supplemental manganese (Mn) should be reduced (intake should be no more than 2 milligrams). More than 20 mg daily of manganese (Mn) can lead to irregular heartbeat, according to researchers at the United States Department of Agriculture (USDA).

I learned about the problem of manganese toxicity from a male caller who claimed that he had cured a life-long heart arrhythmia. Using the Internet to research his condition, the caller had found and contacted USDA researchers in South Dakota. The USDA scientist told him that the heart has an equal affinity for both manganese (Mn) and magnesium (Mg) but requires copious amounts of magnesium (Mg) for a regular heartbeat. Too much manganese (Mn) crowds out magnesium uptake and causes an irregular heartbeat.

The USDA scientist noted that 20 mg of manganese (Mn) daily will cause the problem and recommended reducing manganese to 2 mg daily. Furthermore, the researcher said that it can take 60 days for the body to detoxify and rid itself of excess manganese before the heartbeat becomes regular.

The caller found that by studying labels and adding up the manganese in his supplements he was indeed consuming more than 20 mg of manganese. He cut back to 2 milligrams daily and in 60 days, as the USDA researcher had predicted and for the first time that he could remember, his heartbeat became normal.

The caller contacted the USDA researcher in South Dakota to thank him, but for some reason the researcher denied having given him this advice. This man then called me. During the investigation we noticed that the USDA papers that had been posted had been taken down. It seems likely that USDA researchers, like myself, are not supposed to offer medical advice to people or study the effects of nutrients on humans. After one or two years, several new papers appeared at the USDA Web site including a paper with the following abstract: “Manganese alters mitochondrial integrity in the hearts of swine marginally deficient in magnesium…. These results suggest that high Mn, when fed in combination with low Mg, disrupts mitochondrial ultrastructure and is associated with the sudden deaths previously reported.”
I do already get about 10 mg of manganese from diet. In hair tissue analysis me manganese has been for 2 year deficient, right in the middle of normal otherwise (8 years in total). Loads of further information pro and con about Manganese, safe intake levels, and how to reduce toxicity at https://www.selfhacked.com/blog/manganese/
 
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percyval577

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I am astonshed, too. But 500g kidney beans contain already 15mg manganese.
Look at blueberries for dessert, 100g contain 4mg.
The reported amounts are not completly unusual, though pure (but from beans they get resorpted quickly as well I know)

The Website seems to be nice, and the Pauling quote as well!
Anyway, they are not aware of the epigenetical change that can occure (Filipov, Seegal 2005, Chen, Ou 2006).
(I won´t tell for a second time why this would make evolutionary sense, but I am proud of it I dare to tell.)
If the consequence of this change would matter (nitric oxide), the question arises, how to get back, right?
(And again, it seems that such a possibility would go conform with evolutionary needs, if you are not somehow - I dont know how - in a special manner ill.)

100g kidney beans contain 3mg manganese.
100g bread (white) contain 0.7 mg/ manganese.

First off, I cannot see any need for any supplementation, reading your nice quote.
I am bound to very low effort in respect of thinking, please correct me.
After I have started to reduce my manganese intake, a few beans have been a catastrophy.
Now, after 2,7 years I can eat bread again without feeling bad, but I am still sensitive.

Secondly. If it would turn out to be true, that we all were low on manganese,
than very very strangly, this mechanism I put all my attention to
would nevertheless say, get healthy by low manganese intake. (And it would take time time time time time, right?)

The manganese would be in all of us every time hugly awaited by 1/4 of our brain (microglia).
(Any details are very likely still not known, right?)
And if we would feed them, they would carry on to request it (in this theory if it would turn out true). And remember,
nerves (3/4 of the brain) are crucial (and not only for feeling but for some further regulations as well).

Please notice, I didn´t ever say that this mechanism would be the cause in your case.
I only say it might be possible,
and all the connections are somehow "beautiful", which naturally tries to indicate what a theory likes to be.

Last off, surprisingly the selfhacked website mentioned this cancer issue (but without making it understandable, right?).
 
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percyval577

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A serious concern will be osteoporosis for woman.
Maybe there are any tricks? Probably not to be found out within the next 20 years.
(A very very very speculative and rough guess would be
to care for constant manganese intake, whatever high it would be, not to confuse the osteo... and whatever by the Mn-enzyme)

Interestingly enough:
  • Our disease affects more women than men (75%, I think it was)
  • Our associated thyroid issue: female mice but not male mice became goitrous under very high manganese diet.

epigenetic change ...And it would take time time time time time, right?
Any tricks for acceleration?
Methionine and - now with methionine even more carefully - nickel (very very small amounts)?
Nucleoside DNMT inhibtors (5-azacyttidine, 5-aza-2´-deoxycytidine); Non-nuceleoside DNMT inhibtors (hydralazine, EGCG, MG98)? Supposed originally for cancer treatment. EGCG in green tea, generating quit a lot hydrogen peroxide.

PS: I googled osteporosis and nickel, contributing to the vaque idea to make gene expression smooth and even in the bones (I will do a thread on the little investigated nickel issue), but found only two websites that claimed nickel would be helpful, without any further information.
 
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pamojja

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But 500g kidney beans contain already 15mg manganese.
Never in my life I ate 500g of kidney beans in one day. As said, I get about 10 mg in average from diet. And with the 1-2mg form supplements seems to be the perfect spot for me to not get deficient.

On the other hand I completly believe that you do badly with any, in that case better experiement with less. There is just too much bio-chemical individuality to make out of an individual apprach a one-size-fits-all.