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jhnycmltly

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https://clinicaltrials.gov/ct2/show/NCT02164253

"The FAIR-ALS study is to investigate the safety and efficacy of a scavenger treatment of iron deferiprone, which would reduce the brain iron to limit the development of amyotrophic lateral sclerosis.

It has been shown an excess of iron in the central nervous system carrying a sporadic ALS patients. Iron overload associated with a loss of motor neurons may explain the signs of the disease (atrophy).

The investigators discuss the hypothesis that reducing excess iron, the investigators can reduce the loss of neurons and thus the progression of signs of the disease."
 
Well, iron is an oxidant so I guess it makes sense.
 
What I am wondering is they must not have any spectacular results yet as they have had in those with diagnosed neurodegeneration with brain iron accumulation (NBIA) because nobody in this Clinical trial has reported those kind of results, it's been a year?


"We report the results of iron chelating treatment with deferiprone in a 61-year-old woman with signs and symptoms of neurodegeneration with brain iron accumulation (NBIA)," scientists in Genoa, Italy report. "After 6 months of therapy the patient's gait had improved and a reduction in the incidence of choreic dyskinesias was observed," wrote G.L. Forni and colleagues. The researchers concluded: "Her gait returned to normal after an additional 2 months of therapy, at which time there was a further reduction in involuntary movements and a partial resolution of the blepharospasm."

Those are impressive results.
 
However "impressive" a single case report, this wasn't a case of MND.
 
They've been studying iron chelators for awhile because of the iron linkIroning iron out in Parkinson's disease and other neurodegenerative diseases with iron chelators: a lesson from 6-hydroxydopamine and iron chelator... - PubMed - NCBI to neurodegenerative diseases.

"Intranasal deferoxamine provides increased brain exposure and significant protection in rat ischemic stroke."
"Relative to blood concentration, IN delivery increased targeting of DFO to the cortex approximately 200-fold when compared to IV delivery."
"These experiments suggest intranasally administered DFO may be a useful treatment for stroke, and a prophylactic for patients at high risk for stroke."

Intranasal deferoxamine provides increased brain exposure and significant protection in rat ischemic stroke. - PubMed - NCBI

One might wonder whether the natural iron chelator phytic acid, found in food, would pass the same olfactory route, since it has again been shown to prevent damage after ischemia?

"Myo-inositol hexaphosphate (phytic acid), a highly charged antioxidant, has been found to chelate metal ions such as iron and calcium and to scavenge hydroxyl radicals, OH."
"These results suggest the potential use of this antioxidant in salvaging the heart from ischemic and reperfusion injury"

Protection of ischemic heart from reperfusion injury by myo-inositol hexaphosphate, a natural antioxidant. - PubMed - NCBI

"Phytic acid suppresses ischemia-induced hydroxyl radical generation in rat myocardium"
"These results suggest that phytic acid is associated with antioxidant effect due to the suppression of iron-induced •OH generation. "

Phytic acid suppresses ischemia-induced hydroxyl radical generation in rat myocardium. - PubMed - NCBI
 
However "impressive" a single case report, this wasn't a case of MND.
We don't know that, simply because there have been cases of ALS diagnoses in those with NBIA.
"Frontotemporal dementia-amyotrophic lateral sclerosis complex is simulated by neurodegeneration with brain iron accumulation."
Frontotemporal dementia-amyotrophic lateral sclerosis complex is simulated by neurodegeneration with brain iron accumulation. - PubMed - NCBI

"Lipid oxidation and peroxidation in CNS health and disease: from molecular mechanisms to therapeutic opportunities."
"Neurodegenerative diseases (AD, ALS, bipolar disorder, epilepsy, Friedreich's ataxia, HD, MS, NBIA, NPC, PD, peroxisomal disorders, schizophrenia, Wallerian degeneration, Zellweger syndrome) and CNS traumas (stroke, TBI, SCI) are problems of vast clinical importance."

Lipid oxidation and peroxidation in CNS health and disease: from molecular mechanisms to therapeutic opportunities. - PubMed - NCBI
 
J, the symptoms in your case report were not those of MND. Yes, any two disorders can overlap. The case described did not have MND.

We are all well aware of the links, many as yet to be appreciated, among the various CNS disorders, and I did research in this area professionally.

If I had a nickel for every paper about lipid peroxidation in every imaginable disorder...the full picture is more complicated, I'm afraid.

In short, the links you have posted do not add up to an evidence base for a low iron diet, which in fact could imperil PALS' limited mobility, appetite, balance and energy. Nutrition can be life-preserving in ALS. Please do not try this at home.

And J, please hold your fire. You have made your case; there is a commercial product involved here, and you have had ample air time. If it works, more data will emerge.
 
jhnycmltly would you mind opening up now and telling us what your link to ALS is?

Your profile says 'other' - which means we have no idea.

Are you part of the businesses behind the products you are posting about? Are you going to profit if anyone takes this up?

I hope you can honestly say no, but it just seems really strange to land in a forum like this, make no introduction on yourself and just keep posting these things.

Of course I don't mean you have to give your full name to us or anything, just tell us how you are connected to ALS and to the links you are posting. Thanks
 
I have been studying the effects of iron in the human body for twenty years, running into the likes of the moderators here for the same amount of time. Posts, as evidenced here recently, being removed because moderators know more than me ..
I have no 'interest' other than the fact I have a hypothesis, Herbivore Hypothesis, in which I describe how man is an obligate frugivore-herbivore, unable to eat meat due to the buildup of the metal iron leading to disease. As evidenced in the studies provided, iron is suspected to be involved in many neurodegenerative diseases including ALS. Twenty years later, I still have studies pulled down from sites such as this by moderators who seem to have no interest in the disease being discussed other than the fact they may have known someone with the disease. At one time moderators could not be a moderator UNLESS someone directly related to them suffered the disease, and it seems this 'rule' is no longer being applied. The rule was in place because it seemed those not directly involved had a tendency to not 'think outside the box' as much as those who have someone close with the disease simply because those more closely involved were more likely to go the extra mile, such as not removing posts.
 
These are a few of the studies which have linked iron to ALS.

"The SWI patterns observed in this study suggest that widespread alterations due to iron disturbances occur in patients with ALS and correlate with disease severity."
"quantitative evidence for increased iron deposition in closely localized regions along the CST in ALS patients"
"Iron-mediated oxidative stress plays a pivotal role in the pathogenesis of amyotrophic lateral sclerosis"
"ALS patients have altered iron metabolism"
"Increased iron level in motor cortex of amyotrophic lateral sclerosis patients"
"ALS patients may have increased iron storage, as measured by increased serum ferritin and TSC"
"Iron chelation therapy may have the potential for the prevention and treatment of ALS"
"Increased incidence of the Hfe mutation in amyotrophic lateral sclerosis"
"SOD1-dependent mechanism for iron to manifest its cellular toxicity"
"Brain iron MRI: A biomarker for amyotrophic lateral sclerosis"
"Inappropriately chelated iron in the cerebrospinal fluid of amyotrophic lateral sclerosis patients"
"may respond to therapies that reduce iron intake or increase iron elimination"
"Superficial siderosis of the central nervous system: secondary progression despite successful surgical treatment, mimicking amyotrophic lateral sclerosis"
"iron-chelating drugs possessing neuroprotective/neuritogenic activities may offer future therapeutic possibilities for motor neurodegenerative diseases."
"Frontotemporal Dementia-amyotrophic Lateral Sclerosis Complex is Simulated by Neurodegeneration With Brain Iron Accumulation"
"Dysregulation of iron metabolism in Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis"
"Increased serum ferritin levels in amyotrophic lateral sclerosis (ALS) patients"
“Iron accumulation and dysregulation of iron transport and storage has been found to be associated with many other neurodegenerative conditions, such as Parkinson’s disease, Huntington’s disease (HD), multiple sclerosis and Amyotrophic Lateral Sclerosis"
"Iron Metabolism Disturbance in a French Cohort of ALS Patients"
"novel multimodal iron-chelating drugs possessing neuroprotective/neuritogenic activities may offer future therapeutic possibilities for motor neurodegenerative diseases"
"studies investigating high nutrition diets and iron chelation for the treatment of ALS are warranted"
"neurodegeneration with brain iron accumulation mimicking juvenile amyotrophic lateral sclerosis"
"Iron in Frontotemporal Lobar Degeneration"
"iron accumulation, oxidative damage and chronic inflammation as common pathognomonic signs of a number of neurodegenerative diseases that includes Alzheimer's disease, Huntington disease, amyotrophic lateral sclerosis, Friedrich's ataxia and Parkinson's disease"
"High levels of iron have been found in the brains of people with neurodegenerative diseases like Alzheimer’s, Parkinson’s and amyotrophic lateral sclerosis (Lou Gehrig’s disease)"
"Motor cortex hypointensity on 3T MRI FLAIR images in ALS is due to increased iron accumulation by microglia"
"Three new drugs to treat and perhaps prevent neurodegenerative diseases including Alzheimer's, Parkinson's and ALS recently received patents. The trio of drugs mop up excess iron before it can trigger a "brain rust" chemical reaction, a hallmark of many neurodegenerative diseases."
"Iron has been shown to accumulates at site where neurons degenerate in neurodegenerative diseases of Parkinson's disease, Alzheimer's disease, Huntington disease, amyotrophic lateral sclerosis and Friedreich ataxia"
 
I'm all for scientific debate, but cut and paste doesn't substitute for it, nor are long personal anti-Establishment (that, I'm not, speaking only for myself) rants a good use of our users' limited time.
 
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