CFS supplement list . What works and what doesn’t.

Learner1

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I agreee, but there are many more iron loading genes that haven't been explored. Hematologists are quick to dismiss patients with iron overload who do not have the classic forms.
Agreed.
One problem with the iron panel is that it only indicates iron in the blood, but not organs. Someone can have what looks to be iron deficiency, but have iron deposition in the liver, brain, and other organs.
This is why you need as many measures as possible and definitely more than once. As I am getting serum ferritin and an iron panel done regularly, it is amazing how they all change quite a lot.

However, though your point is well taken, I am puzzled by how one would determine if one has irin overload in the brain if you cant measure it from blood. Would you do a biopsy of the brain, then?:eek:
I've read the anecdotes of many hemochromatosis (HH) patients who still have fatigue and other symptoms that may be remedied by further testing and treatments.
Well, if one has NE/CFS as well as hemachromatosis, fatigue isn't goung to be gone by doing phlebotomies.

Again, what test are you going to run to figure out you have iron overload in each organ? And then, is chelation the answer? If so, how does chelation move it out through the "blood brain barrier"?
Even though phlebotomy has helped to reduce some of the symptoms in HH patients , it doesn't seem to reduce brain iron overload, and many HH patients don't seem to have brain iron overload.

I'm just saying that there's so much more to iron metabolism than an iron panel reveals.
Ideally, you want to catch it early before you've trashed your brain, liver, etc.

There is a lot more. But ingesting tons of copper is not going to fix iron overload alone, and too much copper is toxic.

At any rate, ut would be wise to have a knowledgeable doctor on board and discuss it thoroughly with him or her - this is not a "do it yourself" project.
 

Learner1

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What doses do you take for zinc copper manganese b2 and selenium .
but I’m told moly is not good to take long term ? How much moly would u recommend taking daily .
I have been taking molybdenum for over 5 years. My body needs it, along with a lot of B1 to support the transsulfuration pathway or I smell like sulfur, but I'm also taking a lot of methylation supplements.

I take 2mg molybdenum glycinate daily, with 500mg benfotiamine (B1), along with 200mcg selenium, 15mg manganese, 225mg riboflavin-5-phosphate and 1mg copper.

As @BeADocToGoTo1 and I have said, intake must be individualized for your needs, as your or need a may be totally different. And too much of any metal is toxic, so more is not better.

Are you deficient in B6, by chance?
 
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Are you deficient in B6, by chance?
No I actually had slightly high b6 in my blood . I think the ref range was 16-29 I was 32 . So I lowered my b6 intake cause it was building up in my blood . This was a fasted b vitamin test btw. All the other bs were in range with b2 being lowest . I haven’t checked my b1 yet but I’ve been supplementing with it for years so I’m hoping I’m not deficient in it . And isn’t 1 mg copper a super low dose ? What if one is copper depleted like I am ? Wouldn’t I require a lot more to elevate the levels in the cell?
 

pamojja

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No I actually had slightly high b6 in my blood
When supplemented these simple blood tests of B-vitamins most of time show high in blood. Therefore are only good to indicate deficiency when low, but don't mean with high levels that that particular B vitamin gets utilized at all, and therefore builds up in the blood. Common reason is a lack in co-factor vitamins or minerals.

For example my blood B6 showed triple than highest normal many years. By still further titrating along with co-vitamins, and only after taking at least 200 mg/d vitamin B6, did my dream-recall return, A sign of vitamin B6 sufficiency.

And isn’t 1 mg copper a super low dose ?
For me 2 mg/d already was too much. Though I do get a lot already from diet. Tried to balance the high intake of zinc to overcome its deficiency. Has been taking years to get high blood copper at least a bid down again.
 

Crux

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However, though your point is well taken, I am puzzled by how one would determine if one has irin overload in the brain if you cant measure it from blood. Would you do a biopsy of the brain, then?:eek:
The most accurate method to date is a quantitative susceptibility mapping or QSM MRI. It's very specialized and the "imaging community" analyzes it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5826076/


Again, what test are you going to run to figure out you have iron overload in each organ? And then, is chelation the answer? If so, how does chelation move it out through the "blood brain barrier"?
There are iron chelators, such as deferoxamine, deferasiriox, and deferiprone. Deferiprone has been found to cross the BBB. There is some speculation about using Ceruloplasmin to mobilize brain iron.

There is a lot more. But ingesting tons of copper is not going to fix iron overload alone, and too much copper is toxic.
Are you kidding me? No one is advocating this. In fact, alternative medicine is attempting to incite fear about copper toxicity and they've certainly had great success. I read it here very often.

It's easy to lower copper, just take zinc, molybdenum, fructose, iron, and so on. Metals are expelled via the liver, except for iron.
At any rate, ut would be wise to have a knowledgeable doctor on board and discuss it thoroughly with him or her - this is not a "do it yourself" project.
Unfortunately, only some researchers and doctors are knowledgeable about this. Their numbers are growing, as is the epidemic of neurodegenerative diseases, especially dementia.

Regular ol' docs are way behind on this subject. I'm not gonna die waiting....

There are supplements that have shown iron chelating properties : R-lipoic acid, Apolactoferrin, EGCG in green tea, and some herbs, such as rosemary etc. Curcumin chelates iron.

There are many, many papers regarding brain iron deposition and neurodegeneration. I believe ME/CFS should be included, as one neurodegenerative disease.

Ceruloplasmin, a copper protein has been shown to mobilize iron from tissues and organs. Copper enzymes regulate iron metabolism. People with low ceruloplasmin accumulate iron in brain, organs, and tissues.

Even Wilson's patients accumulate iron because of low ceruloplasmin.

But, I do agree that we all need more knowledgeable doctors.
 
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or example my blood B6 showed triple than highest normal many years. By still further titrating along with co-vitamins, and only after taking at least 200 mg/d vitamin B6, did my dream-recall return, A sign of vitamin B6 sufficiency.
Did you do the blood work fasted or non fasted ?

For me 2 mg/d already was too much. Though I do get a lot already from diet. Tried to balance the high intake of zinc to overcome its deficiency. Has been taking years to get high blood copper at least a bid down again.
What were your copper overload symptoms and how did you become copper toxic in the first place ? Maybe stopping copper altogether until symptoms go away .
 

pamojja

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Blood work always fasted. From most supplements even in massive overdose I don't get any symptoms (if one doesn't counts the synergistically accumulating effects of multiples of deficiencies aggravating my major diagnosis as symptom, ie. PAD, COPD, T2D, ME/CFS). But I do see it in serum and whole blood tests (which includes RBC, the actual cellular content). Other than with B-vitamins, with minerals this is significant. Therefore I did stop additional copper for years, but blood content came down very slowly only. Despite taking up to 70 mg/d of zinc, and also here blood levels rising very slowly too.

However, even just heading in the right direction with blood tests, still far from optimal, brought major improvements with all my diagnosis: a 60% walking disabilty from PAD revoked, asymptomatic COPD improved that much, no more monitoring needed, T2D controlled with diet, and since 1 year I'm free from PEM (before almost constant).
 

Crux

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@pamojja ;

Just to clarify, wasn't your serum copper high normal but not out of range?

Also, I may be wrong, but didn't you have some elevated iron titres in your iron panel, such as high transferrin saturation? Even though ferritin was normal.

Copper supps. can mobilize stored iron, which can be uncomfortable. Iron overload also disturbs calcium metabolism which can damage heart.

Copper can increase nitric oxide production as well as norepinephrine.

Thanks
 

BeADocToGoTo1

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I also take the moly , boron and biotin to help control /reduce candida overgrowth but I’m told moly is not good to take long term ? How much moly would u recommend taking daily .
I only took it during my microbiome rebalancing actions, for about 3 months. 1mg per day. Sometimes it is also added in a multi-vitamin pill so I was always careful to add up the total of all supplements taken, especially when I was taking many different supplements and medical food. But your need might be quite different, hence the importance of nutritional/metabolite testing.

Creatine 5g+ per day helps me a lot But it’s tough on the kidneys and dehydrates the crap outta me . I need several gallons of water when I take it .
Everyone reacts differently, so it is always important to listen to your body. Creatine is also one that I did temporarily and had it during my meals.

But it was a lot of experimenting on what worked for me. Sometimes it was a process of elimination, similar to a reset diet, to figure out which supplement was causing issues and which one was helping. Some weeks I would stop all supplements (except the pancreatic enzymes that keep me alive) and slowly reintroduce them back in one at a time and see how I would feel. For example, it is how I figured out that taking magnesium orally is not for me as I get intestinal distress from it. But my wife takes 500mg per day and it helps her, so again everyone's needs will differ. I also get skin pain from taking too much vitamin D or headaches from glutathione. I try to listen to the signals I get from my body and do the best I can.
 
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BeADocToGoTo1

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Sounds like you tried everything at the same time, so are not able for work out what things actually helped, and what were incidental.
Not quite. It was sadly a very serial path mainly due to the lack of knowledge with my doctors on the overall picture. I kept track of most everything I tried and, as much as I could when feeling that ill, tried to be methodical about my actions. In hindsight, many actions that improved my quality of life could have been done in parallel, with likely quicker results. During the experimentation with supplements I also would introduce them slowly, one at a time, to feel if there was an impact.

If I had mentioned ME/CFS to most doctors they would have rolled their eyes. The gastroenterologist and endocrinologists whom you would think would understand the whole picture of the importance of analyzing inputs to and outputs from the body, and the functioning of metabolic pathways, actually knew (or remembered) the least about that area. In fairness though, due to the sheer amount of learning necessary for just their very specific silo of expertise, it is tough for them, especially when symptoms are so wide ranging. I hope one day there will a separate medical specialty for Metabolic Medicine which works closely together with family practice or primary care physicians as a standard treatment and preventative maintenance element.
 

pamojja

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Just to clarify, wasn't your serum copper high normal but not out of range?
Only in the end of 2014 in serum it was 192 µg/dl (65-165 normal, 75-100 optimal range).
Serum zinc been twice below normal (while testing for 10 years).

Transferrin Saturation - TSAT - was twice above normal, 7 times normal (counting only each half years averages, when available)
Transferrin - UBIC - was 6 times below normal, 5 times normal.
Total Iron-binding capacity - TIBC - was 3 times below normal, twice normal.
Ferritin always been normal. Pretty constantly at 79 in average.
 

BeADocToGoTo1

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...So I don’t think my body is accepting magnesium . How do you get the body to accept vitamins and minerals again ?
I forgot to mention that I use ointments, gels and Epsom magnesium salt baths to get magnesium, as opposed to oral supplements which messes with my intestines. I have no issues with foods that are high in magnesium, now that I am breaking food down again with PERT. There are other threads that mention vitamin and mineral patches and oils, which might be another area to look into.
 

Crux

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@pamojja ;

I'm only writing this out of concern for what's going on here.

Firstly, I hope you are finding a way to manage this iron overload, of course it isn't all about copper. :)

Also, I find it very concerning that the OP is considering stopping copper when there appears to be a deficiency, especially when there are massive amounts of zinc and even molybdenum being taken.

High doses of zinc have caused copper deficiency neuropathy.
Also, extreme amounts of B6 can cause neuropathy, especially when elevated in serum.
 

Hip

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During the experimentation with supplements I also would introduce them slowly, one at a time, to feel if there was an impact.
That's what I usually do, writing notes in a daily journal about any improvements or worsening of symptoms. I also write down any activities I engage in that suggest improvement. For example, I used to work in software programming, but brain fog prevents me from writing software most of the time. But if I suddenly find I am able to do some programming, I will note that down, as it indicates a possible improvement in brain fog.

Sometimes you may not be immediately aware of the benefits of a medication if those benefits are relatively subtle. But if you look back on your notes, you may later be able to spot a trend.

Also, if a medication provides relatively quick improvements (occurring within days or a week or so), then it is also possible to stop that medication as a test, to see if your ME/CFS gets worse again. If it does, and if the ME/CFS get better again when you restart the medication, that's further evidence that the med is having a positive effect.
 

Learner1

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But it is not about ONE medication. Any intervention can affect multiple genes, multiple pathways.take Take B6, for example, is it the methylation effects, the heme effects, or the sphingolipid effects, or the dreaming? Maybe its helping the latter three but you are missing enough B2 or B12, so you still ferl lousy, even though everything needs the B6. Cofactors are important.
I hope one day there will a separate medical specialty for Metabolic Medicine which works closely together with family practice or primary care physicians as a standard treatment and preventative maintenance element.
It's called functional medicine or naturopathic medicine and it exists today. Just not available everywhere.


@Crux Thank you for the link. I looked up QSM MRI and could not figure out if it uses gadolinium, which has an FDA "black box" warning or not. I did find that it's "experimental" which means my insurance won't likely pay for it, so it doesn't sound rrsdy for prime time. Do you get yours done for free at your local research university?

Interestingly I had a brain MRI done by a neurologist about 4 months before we figured out I had hemochromatosis. My serum ferritin was over 600 at the time, though it hadn't been that high for long after surgical menopause a year earlier. The MRI was unremarkable, no signs of inflammation or lesions, and IL-6 and IL-1B were normal.

I've seen 2 hematologists and 3 other pretty sharp doctors and none of them wanted to use the pharmaceuticsl chelators to get the excess iron out of me, even though I asked them all.

So, I'm left to conclude that it's pretty hard to get the QSM MRI and difficult to get the iron out of the brain. Best not to let iron into the brain to begin with...


On to copper. How exactly do you tell if you have copper overload? I have copper results all over the map with RBC, WBC, serum and plasma on LabCorp, SpectraCell, and NutrEvals being either high or low and ceruloplasmin absolutely normal. (Zinc is lowish normal.)