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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Insight anyone?

Hip

Senior Member
Messages
17,824
Its much more in depth than that. I would be happy to tell you more about it if you're actually interested -- it seems however from your light investigation and response that you are not.

I could not see much on that website that amounted to anything much more than simply taking magnesium, and not particularly high doses of magnesium either. ME/CFS patients take higher doses. But if there is something I missed on the website, please do explain. I spent around 15 minutes reading various bits of the site.

High dose magnesium is used in ME/CFS, either by injection of magnesium sulfate, or by transdermal magnesium cream that you apply to your skin from head to toe (the method I use). You can't take very high doses of magnesium orally, because at a certain dose level (for me around 500 mg), magnesium causes bowel flushing (diarrhea).

The benefits of high dose magnesium in ME/CFS likely arise not just from its nutritional effect (both intracellular magnesium and intracellular potassium are low in ME/CFS), but also from the effects high doses of magnesium have on the NMDA receptors: high dose magnesium acts as a good NMDA receptor antagonist, which will tend to have a calming effect on the brain, as it counters the over-stimulatory effect that high levels of glutamate exert via the NMDA receptors.
 
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16
I could not see much on that website that amounted to anything much more than simply taking magnesium, and not particularly high doses of magnesium either. ME/CFS patients take higher doses. But if there is something I missed on the website, please do explain. I spent around 15 minutes reading various bits of the site.

What was missed is that the website is infrequently updated and the majority of the information shared is in the Facebook group.

The idea is that excess unbound iron and copper in the body causes a lot of problems for many people (it feeds bacteria and viruses among other things), and that the body needs balance in minerals (which just are not in the soil in necessary amounts anymore.)

The general protocol has steps for raising ceruloplasmin (as well as steps for not decreasing it), and raising mineral levels in the body.

The protocol includes whole food vitamin c supplements, magnesium, B supplements (typically from whole food sources like rice bran and bee pollen, but quality supplements are also fine), cold pressed cod liver oil (like Rosita's brand -- for the retinol, vitamin d, and fats), "adrenal cocktails" (fresh OJ, cream of tartar and sea salt -- for potassium, sodium and vitamin c), wheat germ oil (for vitamin e and reducing unbound iron), boron, bicarbonate, trace mineral drops, not taking vitamin D or calcium supplements, not eating processed food, high fructose corn syrup, no low fat diets and more. There is also talk about which forms of each supplement to take, and it can be tailored to individual needs as noted by not only the hair mineral analysis, but a lot of blood work is also suggested.

There are plenty of people who say it's helped them quite a bit (I was one until I could no longer take magnesium), and of course there are naysayers for many various reasons. I can see the flaws in his thinking, training and methods, but when you're desperate sometimes you're willing to try things that don't seem to be harmful. When they work, its great!

If you want to know more indepth what the recommendations are I suggest joining the Facebook group -- be warned it is a zoo of 60k people asking the same thing over and over again, but there is some learning to be had.
 
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so could you please expand, in particular, on increasing ceruloplasmin. What is the theory and practice here?


Hopefully the image works. The image explains the how. The theory is that increased ceruloplasmin will bind with the unbound iron and copper which will stop feeding viruses/bacteria among other things.

I understand that not everyone wants to be a part of Facebook, but unfortunately I don't think I can do all of the information justice paraphrasing and sharing it here. It took me months of reading in the group to even begin wrapping my head around the concepts enough to practice them.
 

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South

Senior Member
Messages
466
Location
Southeastern United States
lowered blood pressure (sometimes leading to orthostatic hypotension)
@countingstarsx Magnesium can lower blood pressure, bad news for those of us with too-low blood pressure risks to begin with.

I don't touch magnesium supplements,and haven't for years - my blood pressure hovers at too low already.
Not everyone needs magnesium supplements, despite all the articles and experts out there who say so - although I understand that most of those experts are writing their articles for "the general public".

"Elevated serum levels of magnesium (hypermagnesemia) may result in a fall in blood pressure (hypotension)"
http://lpi.oregonstate.edu/mic/minerals/magnesium
 

Hip

Senior Member
Messages
17,824
@countingstarsx
Just reading through a few more bits of Morley Robbins's "Magnesium Advocate Group" website; his philosophy is bizarre:
o There is NO such thing as “medical disease”
o There is ONLY “metabolic dysfunction” CAUSED by “mineral dysregulation”
o This is TIGGERED by our “moronic diet” of Iron-enriched & Iron-altering foods
Source: MAG-pie Alert!… #16 TOXICITY OF IRON
So he has convinced himself that every single medical disease is caused by mineral dysregulation!?! Not denying that mineral status can be a factor in some conditions, but to put every disease down to mineral status is insane.



The idea is that excess unbound iron and copper in the body causes a lot of problems for many people (it feeds bacteria and viruses among other things),

For coxsackievirus B, a virus linked to ME/CFS, there does seem to be some truth to the idea that excess iron makes the infection more virulent; see: Benign coxsackievirus damages heart muscle in iron-loaded vitamin E-deficient mice.

The virulence of coxsackievirus B is also increased under conditions of low selenium, and low vitamin E.



@countingstarsx, when you were getting benefits from magnesium supplementation, you say you were taking oral doses of around 1000 mg daily. That is a reasonably high dose (though probably not quite a high as you would get from transdermal magnesium).

So I am thinking that one of the benefits you obtained from magnesium may be via its NMDA receptor blocking abilities. If true, then you could consider the drug memantine, which like high dose magnesium is also an NMDA blocker. Some ME/CFS patients get good results from memantine (though like any treatment for ME/CFS, sometimes the benefits cease to manifest after some time).

Another avenue to explore is transdermal magnesium. Perhaps if you take magnesium transdermally, you may not get the negative responses you are currently getting from oral magnesium. You can buy magnesium cream online (this is simply magnesium chloride), or more cheaply, you can buy some Epsom salts (magnesium sulfate) from your local pharmacy, make up a strong solution of Epsom salts (eg, a mug full of Epsom salts powder in 500 ml of water), and then splash this on to your skin from head to toe, letting it dry in for a few minutes before putting you clothes back on (this can be conveniently done after a bath or shower).
 
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but to put every disease down to mineral status is insane.

As I said, there are flaws in his ideas and there are people who find him absolutely insane. I get that. I can't say I 100% agree that he knows what he is talking about in all aspects, but when something works for you it works.

I never had benefits from sole usage of magnesium -- it was in taking the whole protocol that I began feeling better. The 1000mg I stated did come in mixed forms, magnesium bicarbonate water, magnesium malate, epsom salt baths, and magnesium oil applied topically. The first reaction to magnesium I ever had was actually during an epsom salt foot soak.

My desperation to feel better hasn't overpowered the anxiety I have about pharmaceuticals, so I haven't and probably wont try any at this time.