My manganese experiment

[Mary]

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.

Also I have just learned that iron is necessary for thyroid functioning! and my doctor never said a word about this either. I take Naturethroid (Armour equivalent) The more I learn, the more I realize I don't know ---

Mary

 

[vortex]

any updates? I am trying 8mg manganese

 

[Mary]

any updates? I am trying 8mg manganese

I'd forgotten all about this thread and the link between iron and manganese. I try so many things ... Anyways, about 6 weeks ago I restarted manganese at 10 mg. and am doing fine that. I've been taking more minerals so perhaps my iron levels are better, it's been awhile since they've been tested.

Someone had posted that manganese was necessary for the production of GABA and I've had a lot of sleep difficulties for quite awhile, so re-started manganese. It's not hurting me, and may be helping a little, I'm going to stick with it.

 

[renski]

@Mary and everyone, how did you get your Iron levels up, other then taking iron are there any co-factors?

 

[Mary]

@Mary and everyone, how did you get your Iron levels up, other then taking iron are there any co-factors?

@renski - I don't know of any co-factors though that doesn't mean anything. I'd suggest doing a separate thread about raising your iron levels and hopefully you will get some good response.

 

[KenJT]

I have started to notice that when i take manganese i get a weird pressure in the head and brain fog. I am wondering if i am very deficient or i have too much.

 

[percyval577]

I have started to notice that when i take manganese i get a weird pressure in the head and brain fog. I am wondering if i am very deficient or i have too much.

A low manganese diet is the major key for me, I also got bad from a hugh Mn diet (beans and other poultry).
Here some experiences with Mn: threads/low-manganese-diet

Mn has two well known actions in the brain:

• bringing back glutamate from the postsynapsis into the presynapsis through glutamine synthase, so being part in the main exitatory neurotransmitter system
• inforcing the iNOS to produce nitric oxide in the presence of LPS, this happens in a ime and dose dependent manner, cf the inroduction by Filipov et al 2008: threads/manganese-nitric-oxide-in-the-immunesystem.

I have just began a thread for literature on this: threads/manganese-nitric-oxide-in-the-nervous-system

 

[YippeeKi YOW !!]

The more I learn, the more I realize I don't know ---

The frightening corollary to that is that you also learn how much your Drs don't know, or have forgotten if they ever did.

 

[YippeeKi YOW !!]

@Mary and everyone, how did you get your Iron levels up, other then taking iron are there any co-factors?

Iron is best taken on an empty stomach, with some Vit C, which improves its bioavailability.

Iron bis-glycinate is the gentlest form. I used to take it late at night, well after dinner, and with the accompaying Vit C. Worked well.

@Mary
I didnt know about the connection between iron and the thyroid, thank you for that !!!!

 

[Mary]

The frightening corollary to that is that you also learn how much your Drs don't know, or have forgotten if they ever did.

Yes! I had a doctor for several years who was a treasure. He was an orthomolecular doctor, used to be a shrink but found that many of his patients had nutritional deficiencies and he started treating them that way. He was so knowledgeable though he could not help with the core of ME/CFS but he got me on a good nutritional regimen, and was always open to learning new things. Unfortunately he died 4 or 5 years ago - I didn't appreciate him as much as he deserved! But that's probably why I try to tackle all my problems from a nutritional standpoint first, instead of looking for drugs to deal with symptoms.

 

[YippeeKi YOW !!]

I had a doctor for several years who was a treasure.

I remember you writing about him in another thread lsat year, and I was so happy for you, until I got to the part about where he'd died.

How brilliant for a psych to realize that most of his patient's problems started at a nutritional level, and to add that area of expertise to his CV. There arent many out there like him, and I'm hoping that you find another.

Maybe find an Orthomolecular Medicine Center near you and see what they have to offer?

 

[Mary]

Maybe find an Orthomolecular Medicine Center near you and see what they have to offer?

There isn't one. There are some functional medicine doctors in Los Angeles, a 1-1/2 to 2-1/2 hours away, depending on traffic. But most don't take Medicare, you pay out of pocket. Actually I'm planning to see a DO in the new year who does take medicare and asking him to look at my neck. It's not severe at all like many here but does have a few issues and I'm hoping he would be more interested in it than the typical MD.

My former doctor couldn't do a lot for me, but he got me on Armour thyroid, and if I wanted certain testing done, he would do it. And he would make suggestions from time to time about something new he'd read about. I saw him 2 x a year. And as we all know, there is no treatment for PEM, no one yet knows the cause.

My former doctor also took Medicare!! Unbelievable . . . most functional MDs you have to pay at least $500 just to get in the door.

 

[JES]

A low manganese diet is the major key for me, I also got bad from a hugh Mn diet (beans and other poultry).
Here some experiences with Mn: threads/low-manganese-diet

Mn has two well known actions in the brain:

• bringing back glutamate from the postsynapsis into the presynapsis through glutamine synthase, so being part in the main exitatory neurotransmitter system
• inforcing the iNOS to produce nitric oxide in the presence of LPS, this happens in a ime and dose dependent manner, cf the inroduction by Filipov et al 2008: threads/manganese-nitric-oxide-in-the-immunesystem.

I have just began a thread for literature on this: threads/manganese-nitric-oxide-in-the-nervous-system

Just curious, have you tried to eat your low-manganese diet and then supplement with manganese pills to see what happens? Because to me one obvious problem when you start to eliminate foods, there is a possibility you may actually be eliminating something else than manganese. Most whole foods contain hundreds or thousands of different compounds, which if you choose to consume them (or not consume) may all be affecting your health together somehow. It's like with grains we all thought it was gluten that caused the issues, but turns out there are other things in grains you may react to as well.

 

[YippeeKi YOW !!]

@Mary
Here's a link to a list of possibilities, provided by Orthomolecular.org, with no proimses that any of those listed are what you're looking for, but I thought it might help. There are also a whole boatload of other links on this site that might yield info for you if your appt in Jan doesnt pan out.
http://orthomolecular.org/resources/pract.shtml#CA

Here's a list of clinics that might provide some info. One of them, The Riordan Clinic, seems to offer a large library of everything from books to tapes to newsletters, which I assume are available for loan but that's just a guess. They might also know of orthomolecular practitioners closer to you.
http://orthomolecular.org/resources/centers.shtml


The Riordan Clinic
https://riordanclinic.org/


And just to make sure that I'm as boring and intrusive as possible, here's a link to the Linus Pauling Institute up in Oregon
https://lpi.oregonstate.edu/

 

[Mary]

Thanks @YippeeKi YOW !! - yeah, I've seen links to the Riordan Clinic and it's in Kansas (!) Also the Linus Pauling Institute. I can't travel to those places. There's something called the Tahoma Clinic by Seattle I'd like to go to, but I'm sure it would be a lot of money and very rough on me traveling. I don't have a lot of money!

If I knew one of these places would cure me, then I would do whatever I had to do to get there. But no one has an answer for ME/CFS. Four years ago I spent $1500 (included travel costs and follow-up phone call) to see Dr. Kaufman up north and he was able to do nothing for me except increase my CoQ10 and ALA. Now I understand he charges $1,000 a visit! It makes me feel a little sick, how much he's charging.

I think as for all of us, we have to direct our own care now. So I'm choosing to see a DO I might have a chance of getting some useful information from. I saw an endo in L.A. I had to pay cash for (several hundred dollars) and all he ended up with was trying to cut my thyroid med. My blood work is always good.

If my former doctor were still alive, I think I would ask him to try do more testing re phosphate. I tried to get this done with the endo but he didn't seem to comprehend what I was telling. He really had no clue about ME/CFS.

And so the money goes and goes and goes ...

I looked up "orthomolecular clinics" or something similar, and got a list similar to yours. And then I looked at a few of them, one said it was a "boutique" (expensive) clinic which didn't take insurance. Like I said, my former doctor couldn't do a lot for me, but he took Medicare, he listened to me, he was willing to do testing I requested, he didn't suggest I try exercising (like the endo did), and once in= awhile he would suggest something new he'd read about. Also he's the one who got me my disability for which I am forever grateful!

If there was an orthomolecultar/functional/integrative medicine doctor near me who took Medicare, it might be worth a visit.

 

[renski]

I have started to notice that when i take manganese i get a weird pressure in the head and brain fog. I am wondering if i am very deficient or i have too much.

Check hair analysis or blood plasma for deficiency, no point in guessing..

 

[KenJT]

Check hair analysis or blood plasma for deficiency, no point in guessing..

I have got myself booked in to get some testing down in January. Unfortunately everything closes down over christmas.

 

[percyval577]

Just curious, have you tried to eat your low-manganese diet and then supplement with manganese pills to see what happens? Because to me one obvious problem when you start to eliminate foods, there is a possibility you may actually be eliminating something else than manganese. Most whole foods contain hundreds or thousands of different compounds, which if you choose to consume them (or not consume) may all be affecting your health together somehow. It's like with grains we all thought it was gluten that caused the issues, but turns out there are other things in grains you may react to as well.

I actually did some missjudgements for sure: After I drank 4 cups of tea instead of one and felt worse even on top of my very bad condition, I thought, "Yes, manganese is the thing." But now it has turned out that although the plant should contain high Mn according to informations I had read, the water doesn´t seem so, and the effect should have been due to something other. I actually also got better years ago when having switched from tea to coffee.

I never tried Mn supplement to confirm it, but the effect came consistent upon high Mn-containing foods or high Mn intake from some Mn containing food. Admittedly there seem to have been other catastrophical influences in the first three months.
After I didn´t make Mn mistakes for three years (no catastrophies) I made two this year with pronounced effects: I was high-spirited and ate a n unknown sauce in slalat, I got horrible tooth pain (the tooth turned out to have died). Forgotten from what, I got trigeminus pain, also a pretty intense thing (I think that I am improving in an accelerated manner, and that the improvement consists of an altering in the basal ganglia, this I think to be the reason for different effects).

 

[Mary]

Four years ago I spent $1500 (included travel costs and follow-up phone call) to see Dr. Kaufman up north and he was able to do nothing for me except increase my CoQ10 and ALA.

This wasn't quite fair. I should have mentioned that Dr. Kaufman did extensive testing, and almost all the lab work was covered by Medicare, and his staff went to bat for me over one charge that was initially denied. Unfortunately (or fortunately, depending on your point of view), there was nothing on the lab work amenable to treatment. He did tell me if my HHV-6 results were as high as they had been a few years before, he would put me on an antiviral, but they'd gone down quite a bit (I think due to andrographis).

So I didn't give a fair assessment of my visit with Dr. Kaufman in my above post and for that I apologize. And I don't know of anyone, yet, who can do anything to get at the core of ME/CFS. It was useful having the testing done, covering all the bases, in case there as something that could be done. And I know Dr. Kaufman has helped several members, just not me.