Instead of ME/CFS, could some have simple schizophrenia? Its symptoms: anhedonia, blunted emotions, brain fog, apathy, social withdrawal

[Hip]

That is the point... so what happens when a specific nutrient (zinc) is made unavailable to utilize and made deficient intentionally during inflammation/infection and then it becomes prolonged? ...potentially hundreds of downstream effects all at the same time that can explain most of what people are experiencing with me/cfs.

Trying to reduce a disease like ME/CFS to a vitamin deficiency is just pseudoscience, in my view.

Have you ever read any of the literature of the orthomolecular people? They point out that there are 10,000s of published studies on vitamin C and all its metabolic pathways; and therefore with so many pathways, vitamin C must be the cure for cancer and any other chronic diseases, right? Wrong! The orthomolecular people are talking nonsense; just because vitamin C is involved in 1000s of pathways, it does not make it a cure for cancer.

I have a lot of interest in supplements and alternative treatments of diseases; but I don't like some of the unscientific notions that you see sometimes in alternative circles.

 

[datadragon]

Have you ever read any of the pseudoscientific literature of the orthomolecular people? They point out that there are 10,000s of published studies on vitamin C and all its metabolic pathways; and therefore with so many studies, vitamin C must be the cure for cancer and any other chronic disease, right? Wrong! The orthomolecular people are talking pure nonsense; just because vitamin C is involved in 1000s of pathways, it does not make it a cure for cancer.

I have a lot of interesting in supplements and alternative treatments of diseases; but I don't like some of the unscientific notions that you see sometimes in alternative circles.

I would agree with that but that is not comparable to what I just posted. If you have a created deficiency during inflammation/infection due to excess of those pro inflammatory cytokines as the body is shifting to an inflammatory state, then you will experience unfortunately the downstream effects if that unavailability/deficiency continues ongoing into a chronic state. Thats in the normal literature, not alternative stuff. We can even substitute drugs in many cases but that doesnt replace a requirement for a nutrient if its needed for a pathway to function or replace all its other functions if it remains deficient using something else, so that information is helpful to all to consider as part of treatment options going forward - you can combine with a drug also in tandem for example.

 

[Murph]

Trying to reduce a disease like ME/CFS to a vitamin deficiency is just pseudoscience.

Have you ever read any of the pseudoscientific literature of the orthomolecular people? They point out that there are 10,000s of published studies on vitamin C and all its metabolic pathways; and therefore with so many studies, vitamin C must be the cure for cancer and any other chronic disease, right? Wrong! The orthomolecular people are talking pure nonsense; just because vitamin C is involved in 1000s of pathways, it does not make it a cure for cancer.

I have a lot of interesting in supplements and alternative treatments of diseases; but I don't like some of the unscientific notions that you see sometimes in alternative circles.

I agree with Hip that long paragraphs listing the many ways in which a molecule is used in the body are easy to find and not proof that a thing is relevant to mecfs. What's more they can feed a confirmation bias.

Nevertheless it is possible that in mecfs a molecule is made deficient by some process associated with a post-viral state. it could be an acquired state of deficiency and restoring that thing could help a lot.

vitamin and mineral deficiency diseases are extremely serious and even when the answer looks glaringly obvious in hindsight (iodine, scurvy, etc) it still took science ages to figure them out. People round here like to say "if that worked, we'd know" about simple tricks but I never believe that.

I very much hold the belief that major treatments are floating around in these pages looking risible and not working for most people because you have to do them just right.

Details matter. Like oral rehydration solution, which is just salt + sugar +water and was invented in the 1970s, saving millions of lives since. There's nothing clever about it except that if you get the ratios wrong the patient dies. Or the way the banana diet existed for decades as a cure for coeliac before they figured out why it worked.

 

[Hip]

If you have a created deficiency during inflammation/infection due to excess of those pro inflammatory cytokines as the body is shifting to an inflammatory state, then you will experience unfortunately the downstream effects if that unavailability/deficiency continues ongoing into a chronic state.

Numerous chronic diseases involve chronic inflammation linked to infection, yet we don't see much improvement when people with these diseases take large doses of nutrients such as vitamins or minerals. ME/CFS patients are experimenting all the time with supplements, but it is rare to find anyone benefiting from megadoses of nutrients.

Some exceptions include B12 injections, and high dose vitamin B1, which can have benefits for some ME/CFS patients. However, benefitting from megadose vitamins does not necessarily imply a deficiency; vitamins in high doses can offer benefits and metabolic effects not seen from RDA doses.

For example, high dose magnesium (as you would get by applying magnesium cream to your body skin from head to toe) has noticeable NMDA receptor antagonism, which can be calming. But you don't notice this with magnesium supplementation to the RDA dose.

 

[Violeta]

I would agree with that but that is not comparable to what I just posted. If you have a created deficiency during inflammation/infection due to excess of those pro inflammatory cytokines as the body is shifting to an inflammatory state, then you will experience unfortunately the downstream effects if that unavailability/deficiency continues ongoing into a chronic state. Thats in the normal literature, not alternative stuff. We can even substitute drugs in many cases but that doesnt replace a requirement for a nutrient if its needed for a pathway to function or replace all its other functions if it remains deficient using something else, so that information is helpful to all to consider as part of treatment options going forward - you can combine with a drug also in tandem for example.

Amen, @datadragon!

And here's an excellent article about B6 by Chandler Marrs, who works closely with Dr. Lonsdale, who wrote a book about healing with B1.

http://www.hormonesmatter.com/reducing-brain-inflammation-vitamin-b6/

 

[Violeta]

Panax Ginseng helps with schizophrenia

"Panax ginseng C.A. Meyer (PG) is one of the most important medicinal plants in Asia (16). In an experimental brain injury model, PG can suppress microglial activation induced by lipopolysaccharide and improve the recovery of motor function after spinal cord injury, thus providing neuroprotection by alleviating post-traumatic inflammatory responses (16,17). Experimental evidence has suggested that it can improve neurotransmission in the brain as an important pharmacological effect of PG (16,17). Ginseng and its constituents are known to have beneficial effects on cognitive performance, memory, and neurodegenerative disease (18). A number of previous studies have focused on the effects of ginseng on central nervous system diseases such as Alzheimer's disease, Parkinson's disease and depression (19,20). However, few studies have investigated the effects of ginseng on schizophrenia. Chen and Hui (21) observed that ginseng has the therapeutic potential to treat various neurological diseases including schizophrenia. Our previous study has also suggested that oral administrated PG can reduces the incidence of schizophrenia-like symptoms in a neurodevelopmental animal model induced by prenatal stress (22).


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6131221/

Also, for those concerned with iron, Korean Ginseng helps regulate iron metabolism.

Ginseng appears to help regulate iron metabolism in both animals and in vitro studies [35]. It has been demonstrated to modulate iron levels by interacting with iron metabolism-regulating proteins, preventing cellular harm from iron excess.

 

[Hip]

Panax Ginseng helps with schizophrenia

Looks interesting. This article says:

Results showed that patients were 50% less likely to have flat affect when taking the higher, 200-milligram dose of ginseng than when taking placebo.

The higher dose also significantly reduced other negative symptoms

Many ME/CFS patients suffer from flat affect (flat emotions), so maybe Korean ginseng might help boost these blunted emotions.

 

[Violeta]

Looks interesting. This article says:


Many ME/CFS patients suffer from flat affect (flat emotions), so maybe Korean ginseng might help boost these blunted emotions.

Panax Ginseng is helping me with mild depression. Korean Red Ginseng from Prince of Peace helps that with just one capsule, the I have to take 2 or 3 times that much white ginseng (that I bought because it was less expensive) to get the same effect. The white ginseng also helps improve sleep pattern.

I will have to think about whether it helps with the flat effect.

 

[Rufous McKinney]

I am more limited in what I can read.

sorry to hear thats happening....how frustrating for you.

Another COVID risk later today when everybody returns here, from going out THERE.

 

[pattismith]

@Hip

A family member of mine have had problems with restless legs syndrome (RLS), which is due to a dysregulation of dopamine in the brain. This dysregulation seems to be due to a local iron deficiency in the brain:


Notably, this can be the case even though systemic iron stores are considered non-deficient.

In my family member's case the RLS resolved after receiving intravenous iron. Due to chronic kidney disease, which increases hepcidin, oral iron wasn't effective in her case since increased hepcidin stops oral iron from being absorbed.

From my limited knowledge about these negative symptoms of schizophrenia, it seems like a lack of dopamine could play an important role.

After some googling I found this study:



In this study they define iron deficiency as a serum ferritin ≤ 20 ng/mL. According to Wikipedia, below 30 or 50 ng/mL can be considered deficient:

I do have RLS and Attention Deficit and sleepiness (both connected to low iron), and my ferritin level was under 20 during my life.

My psychiatrist diagnosed me with brain iron deficiency and gave me oral iron supplement but as you guessed it wasn't efficient.

However after sevral trials and 2 years working on this problem, I discovered that daily Curcuma essential oil on the skin is efficient to allow iron absorption in my gut which is a great finding that I wish to share here.

@Hip

 

[Cipher]

However after sevral trials and 2 years working on this problem, I discovered that daily Curcuma essential oil on the skin is efficient to allow iron absorption in my gut which is a great finding that I wish to share here.

Interesting, what do you think is the mechanism of action? What's your ferritin now, and have you noticed any improvements of your RLS?

 

[pattismith]

Interesting, what do you think is the mechanism of action? What's your ferritin now, and have you noticed any improvements of your RLS?

my ferritin level is now 100 (it's the level my psychiatrist wished me to reach) and I just stopped my iron supplement to see if my level will stay stable with curcuma oil only.

My RLS didn't disappeared (however some improvment can be notice) and I think my symptoms won't improve with iron supplementation only after so many years, my brain has probably some permanent damage.

 

[pattismith]

Interesting, what do you think is the mechanism of action?

The mechanism of action I have imagined, (according to my readings on curcuma and hepcidin) may be blockade of the hepcidin induction by Toll Like Receptor activation (possibly TLR4 TLR7 TLR8).

Topical Mustard oil may have interesting properties too and I am currently using it as well.

 

[Cipher]

The mechanism of action I have imagined, (according to my readings on curcuma and hepcidin) may be blockade of the hepcidin induction by Toll Like Receptor activation (possibly TLR4 TLR7 TLR8).

Do you take it transdermally for better absorption? What dose & brand do you use?

my ferritin level is now 100 (it's the level my psychiatrist wished me to reach) and I just stopped my iron supplement to see if my level will stay stable with curcuma oil only.

My RLS didn't disappeared (however some improvment can be notice) and I think my symptoms won't improve with iron supplementation only after so many years, my brain has probably some permanent damage.

According to some guidelines, IV iron is only recommended for RLS if ferritin is <100 μg/l. However, there's no substance behind that recommendation other than the fact that IV iron hadn't been tested much at higher ferritin levels at the time of writing (2018):

Ferric carboxymaltose should be considered as one of the first-line treatments in patients with RLS. IV iron treatment should not be given to patients with serum ferritin levels >300 μg/l or transferrin saturation >45%. It was noted that the mean serum ferritin was <154 μg/l in these Class I studies. These studies do not provide information about response of patients with higher serum ferritin values. Moreover, only six patients in one of the Class I studies [65] had serum ferritin levels > 100 μg/l. There is, however, no evidence that those with higher serum ferritin levels would not respond. Nonetheless, given the lack of significant experience with higher serum ferritin levels the expert-based recommendations are to limit the initial IV iron treatment to patients with serum ferritin levels ≤100 μg/l.

I found a newer study from 2020 that found that as long as serum ferritin is ≤ 300 μg/l and TSAT% is ≤ 45, the level of ferritin wasn't predictive of treatment response to IV iron at all, and TSAT was only slightly predictive for females but not males.

According to table 2 of that study, 55% of patients with 100-300 mcg/l ferritin improved from IV iron.

It seems like oral iron isn't very absorbable above 75-100 mcg/l ferritin:

As an example of the effects of iron stores (as determined by serum ferritin levels) on iron absorption, approximately 20% of oral non-heme iron is absorbed when ferritin is about 10 μg/l but as little as 1–2% absorption when ferritin is between 50 and 75 μg/l [42]. Therefore, administering oral iron when serum ferritin is greater than 75–100 μg/l is likely to have very limited benefits within a reasonable, clinically meaningful period of time.

https://www.sciencedirect.com/science/article/pii/S1389945717315599

 

[pattismith]

Do you take it transdermally for better absorption? What dose & brand do you use?

I take organic curcuma essential oil (french brand) about 10 to 20 drops transdermally morning and evening, mixed with nuts oil;

I was proposed Iron IV but didn't wan't it.

 

[Cipher]

I was proposed Iron IV but didn't wan't it.

May I ask why? According to the study above there's chance that it will help against your RLS even though your ferritin is 100 mcg/L.

 

[pattismith]

May I ask why? According to the study above there's chance that it will help against your RLS even though your ferritin is 100 mcg/L.

.first reason is my RLS is light and doesn't bother me much.
.second reason is that I want to avoid ROS generation by intravenous iron

 

[Andryr]

So I am wondering whether cases of ME/CFS that involve symptoms such as anhedonia, blunted emotions, social withdrawal and apathy, might actually involve simple schizophrenia.

It indicates how poorly both are understood. Names for bunches of symptoms without understanding underlying mechanisms.

 

[Cipher]

.second reason is that I want to avoid ROS generation by intravenous iron

The risk of inducing oxidative stress seems to depend on the intravenous iron dose, with higher doses of certain types of IV iron being problematic. Fortunately not all types of IV iron can generate oxidative stress or inflammation. For example, ferric derisomaltose seems devoid of such effects, even at high doses:

Spoiler: Study

Abstract

Background

Concerns exist regarding the pro-oxidant and inflammatory potential of intravenous (IV) iron due to labile plasma iron (LPI) generation. This IRON-CKD trial compared the effects of different IV irons on oxidative stress and inflammation.



Methods

In this randomized open-label explorative single-center study in the United Kingdom, non-dialysis-dependent chronic kidney disease (CKD) patients with iron deficiency were randomized (1:1:1:1) to receive a single infusion of 200 mg iron dextran, or 200 mg iron sucrose (IS), or 200 mg or 1,000 mg ferric derisomaltose (FDI) and were followed up for 3 months. The primary outcomes measured were induction of oxidative stress and inflammation. Secondarily, efficacy, vascular function, quality of life, and safety were monitored.



Results

Forty patients were enrolled. No significant rise in oxidative stress existed, regardless of preparation or dose. There was a significant rise in LPI with 1,000 mg FDI at 2 hours that normalized within a week, not impacting oxidative stress or inflammation. A delayed rise in C-reactive protein was noted with IS. High-dose FDI produced a sustained serum ferritin increase (mean ± standard error of the mean of predose: 69.1 ± 18.4 μg/L, 3 months: 271.0 ± 83.3 μg/L; p = 0.007). Hemoglobin remained stable throughout. No adverse drug reactions were recorded during the study.



Conclusion

A single dose of IV iron in CKD patients does not trigger oxidative stress or inflammation biomarkers. Third-generation IV irons have a reassuring safety profile, and high-dose FDI produced a sustained serum ferritin rise and more efficient iron repletion, with no significant pro-oxidant or inflammatory signals when compared to a lower dose and other IV irons.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8041632/