Core etiology of ME/CFS: Fe toxicity?

[aquariusgirl]

Roger researchers have found iron in the brains of Alzheimer's & Parkinson's patients......and they have the same PDH problem as us.

 

[wastwater]

I think tumour surpressor genes are at core of me/cfs and autism

 

[Isaiah 58:11]

I think tumour surpressor genes are at core of me/cfs and autism

That is interesting. Why?
FWIW my family has a pathogenic CHEK2 variant.

 

[wastwater]

When they do genetic profiles in autism it shows cancer locations in some studies
If me/cfs has something to do with foxo that’s a tumour surpressor
Based on personal experience as well

 

[frozenborderline]

i still don't get it... are standard iron tests not enough to see if you have iron overload? do you have to do some sort of chelation test? sounds possibly dangerous

 

[dannybex]

Roger researchers have found iron in the brains of Alzheimer's & Parkinson's patients......and they have the same PDH problem as us.

Lots of abnormalities have been found, including associations w/ pesticides, pollution, smoking and alcohol. And the iron connection is still in question:

https://www.sciencenews.org/article/evidence-conflicts-irons-role-parkinsons-disease

That's not saying their may be some iron dysregulation happening, but not classic 'iron overload'. If anything, I wouldn't be surprised if most people don't get enough iron in their diet these days. Excess iron disrupts the krebs cycle, but sufficient iron is essential for it's function.

 

[valentinelynx]

As a n of 1 that doesn't fit your theory: I have been dealing from iron deficiency anemia for a few years. This certainly has not improved my condition! Just yesterday, I finally received an infusion of IV iron dextran (I am no longer able to absorb oral iron due to GI issues). It has not made me worse (yet, and please knock on wood!), and I am certainly hoping that my energy levels with increase over the next few months.

Many years ago, my mother (who was always skeptical about my illness, but wanted to understand) suggested I get tested for hemachromatosis, so I did. I turned out to be heterozygous for this genetics for this, but never had any evidence of iron overload. Then, in recent years, I have been mostly in a low to very low iron state.

Which is not to say that iron overload may be the answer for a subset of people, and this is definitely one of the diseases that should be ruled out in patients with symptoms suggestive of ME/CFS.

 

[Isaiah 58:11]

^^^ I am similar to valentinelynx

I've had iron pills, shots, and infusion. At last check iron SAT was 7, ferritin 9.

But, to go along with your theory, alethea, I have a friend who is CIRS, EDS, MCAS, etc. and does have hemochromatosis.

 

[aquariusgirl]

@Isaiah 58:11 .....dud the extra iron help?

Folks, on here have reported getting iron infusions & it didn't help....I'm guessing that is because they are hoarding iron or have copper deficiency iron anemia.

 

[pamojja]

.....dud the extra iron help?

In my case it didn't. Only a bid of betainHCL did bring TBIC, TSAT, Transferrin and iron in serum up. Ferritin was the only with in avg. 79 mg/ml in the normal range.

 

[Isaiah 58:11]

@Isaiah 58:11 .....dud the extra iron help?

I don't remember? The infusion was a few years ago. I know we did that because the shots had absolutely no effect.

I know I also tried cutting up grassfed beef liver into cubes and downing a handful of that straight from the freezer every day.

These were the only pills (prescription or otherwise) that seemed to make a difference, but they couldn't keep up with what I was losing: Pure Encapsulations - OptiFerin-C - Hypoallergenic Dietary Supplement with Enhanced Iron Absorption - 60 Capsules https://www.amazon.com/dp/B0064QPMRU/ref=cm_sw_r_cp_apa_RXscAbHS9EP3T

 

[Gondwanaland]

These were the only pills (prescription or otherwise) that seemed to make a difference, but they couldn't keep up with what I was losing: Pure Encapsulations - OptiFerin-C - Hypoallergenic Dietary Supplement with Enhanced Iron Absorption - 60 Capsules https://www.amazon.com/dp/B0064QPMRU/ref=cm_sw_r_cp_apa_RXscAbHS9EP3T

I wonder what the reason would be to not put copper in this formulation

 

[dannybex]

Iron metabolism is tightly regulated, so unless someone has hemachromatosis -- or takes large amounts without balancing them with supportive minerals, vitamins, and perhaps something like lactoferrin, then I can't see how ME/CFS is an 'iron toxicity' problem.

 

[Gondwanaland]

then I can't see how ME/CFS is an 'iron toxicity' problem.

Me neither, unless there is a severe problem with iron synergists/antagonists (e.g. unbalance in B vits). Apart from Hemochromatosis, I know that NAFLD will drive iron up. Also high intake of vit C will drive iron absorption up and this will be detrimental on zinc levels. I think there will always be an underlying cause for high iron ( http://www.acu-cell.com/femn.html ).

ETA

http://www.acu-cell.com/bx.html
... while anyone with a tendency for iron overload would need less Vitamin B1, but much more Vitamin B2.

 

[Antonello1298]

@alethea would donate blood help with iron overload and restore part of the balance?