What principles, lifestyle, supplements would you apply with a juvenile ALS diagnosis?

[Motorneuron]

Hi everyone,

The new doctor who visited me yesterday suspects that I have a juvenile form of ALS ... so one of the many nuances that this disease has ... that doesn't mean having ALL the symptoms but a good chunk.

Of course, they do not yet have the certain dignity waiting for various exams that I will do in the next few weeks .... let's say that I expected it a bit given the severity of the symptoms.

For the first time I did not feel teased by doctors ... it took me 8 years to find one who understood what I was saying (and with difficult speech, one of the many disabling symptoms).

I leave you an image and a link where the metabolic markers most highlighted in the disease are reported ... some of which have already been performed and which match.

On the basis of this data and your experience in the metabolic field ... I would like to have your opinions on how I can maximize my survival ... even by applying Peat's theories which have proved useful only in part unfortunately.

Anything that might be useful for me (notice that I have already tried more than 80 supplements ?).

Thanks everyone

Biomarkers of Metabolism in Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder characterized by the deterioration of motor neurons. However, this complex disease extends beyond the boundaries of the central nervous system, with metabolic alterations being observed ...

www.ncbi.nlm.nih.gov

 

[cupofcoffee]

Hey, i remember hearing haidut and danny mention a peat's friend who chose not to treat it and only take aspirin, and that slowed down to then stop the development of the disease. I don't recommend only doing that but aspirin is probably one of the first picks.


here is where they talked about it (timestamped):

 

[Motorneuron]

Hey, i remember hearing haidut and danny mention a peat's friend who chose not to treat it and only take aspirin, and that slowed down to then stop the development of the disease. I don't recommend only doing that but aspirin is probably one of the first picks.


here is where they talked about it (timestamped):

Thank you but the video is really long and I would not be able to maintain concentration for so many hours. I will investigate aspirin which I know is an FAO inhibitor (high in ALS) so it could help the use of glucose ... unfortunately the few times I used it in doses of 500mg it did not help and many times it worsened the respiratory crises ... probably due to variations in PH and already damaged basic mitochondrial respiration ... pyrucet worked for a few days ... later I think I did not adequately support the glutathione pathway, creating deficiencies in the various pathways.

NADH just one mg grounded me for 24 hours ...

 

[cupofcoffee]

Thank you but the video is really long and I would not be able to maintain concentration for so many hours. I will investigate aspirin which I know is an FAO inhibitor (high in ALS) so it could help the use of glucose ... unfortunately the few times I used it in doses of 500mg it did not help and many times it worsened the respiratory crises ... probably due to variations in PH and already damaged basic mitochondrial respiration ... pyrucet worked for a few days ... later I think I did not adequately support the glutathione pathway, creating deficiencies in the various pathways.

NADH just one mg grounded me for 24 hours ...

They talk about in the ten minutes after the timestamp so you don't need to watch everything.

Best of luck, i hope you get better.

 

[xborg]

I believe there is good reason to link many neuro-degenerative conditions with latent herpes infections. It is known to live 'quietly' in nerves, slowly degrading function without erupting in an active outbreak, making it the prime suspect. Just how and where those symptoms manifest depends on where the virus is hiding out, in what quantities, etc. Attacking the virus with a long series of oxidizing protocols followed by anti-oxidants works wonders. The four oxidizers in ascending order of strength:
1. MMS (ClO2)
2. O2 (hyperbaric)
3. H2O2 (by IV)
4. O3 (various modes)

Of these, MMS is inexpensive and easily used as DIY since its strength will kill any virus but is too weak to kill healthy cells so it's hard to do any permanent damage. The others need some expertise since overdoing them, especially 3 & 4, can kill healthy cells too.

 

[Vileplume]

I think with any chronic degenerative disease, it’s really important to keep the metabolic rate up, so tracking daily temperature is key, along with ensuring optimal digestion.

What’s your current diet like?
How’s your digestion?
Do you know your body temp?

 

[Androsclerosis]

The best option for mental clarity is vitamin B1. I tried choline, aspirin, T3, B3, progesterone and nothing compares with it.
There are few studies posted by haidut where it says that stops the progression and even cures diseases like Parkinson and ALS. The theory behind it is practically a metabolic issue of the brain.

 

[Motorneuron]

Thanks for the replies.

In the last few months I have started to experience an annoying hunger for air / dyspnea which we initially thought derives from a chronic deficiency of B12 and / or folate ... (also the scientific literature says this) but they only partially helped the first days.

I have no respiratory diseases I want to clarify it and ALS affects the diaphragm as a consequence because it is a muscle ... patients have regular saturation despite having breathing difficulties for this reason.

B1 should also help for dyspnea, I used up to 2gr per day with no success. HCL and TPP version.

I am hungry all day I assume because the disease continually increases the metabolic rate so why should I increase it? definitely ghrelin and disrupted leptin.

I eat anything except PUFAs from dried fruit and vegetable oils ... I think around 6000 calories with the same weight for almost 8 years.

Very little muscle response, I would say now absent.

@Androsclerosis @Vileplume

 

[Motorneuron]

I believe there is good reason to link many neuro-degenerative conditions with latent herpes infections. It is known to live 'quietly' in nerves, slowly degrading function without erupting in an active outbreak, making it the prime suspect. Just how and where those symptoms manifest depends on where the virus is hiding out, in what quantities, etc. Attacking the virus with a long series of oxidizing protocols followed by anti-oxidants works wonders. The four oxidizers in ascending order of strength:
1. MMS (ClO2)
2. O2 (hyperbaric)
3. H2O2 (by IV)
4. O3 (various modes)

Of these, MMS is inexpensive and easily used as DIY since its strength will kill any virus but is too weak to kill healthy cells so it's hard to do any permanent damage. The others need some expertise since overdoing them, especially 3 & 4, can kill healthy cells too.

They look very promising especially hydrogen peroxide I had read that it was used to lower superoxide (high in ALS and other diseases).

I honestly have never heard the others ... when I do the pranayama breathing it most likely helps because by increasing the CO2 I allow a greater influx of oxygen to organs and tissues ... just a guess ... especially the phases of apena that I alternate. .. hypoxia probably has pros and cons .... at the moment I feel that my cardiovascular system benefits from doing many of the actions with a lower heartbeat than before.

The walking combined with the counting of the seconds between inhalation, exhalation and suspension of the breath also helps me a lot.

 

[Androsclerosis]

@Backtolife90
It seems that you already have a good nutrition.
Have you ever tried a no starch diet? In my experience starch has some negative effects on the respiratory system mostly because it causes bloating and anhedonia. Also dairy products makes my brain foggy and I become bored of living.
You could try some vitamin B3, it has the same effects as B1 but with a calming effect.

 

[Motorneuron]

@Backtolife90
It seems that you already have a good nutrition.
Have you ever tried a no starch diet? In my experience starch has some negative effects on the respiratory system mostly because it causes bloating and anhedonia. Also dairy products makes my brain foggy and I become bored of living.
You could try some vitamin B3, it has the same effects as B1 but with a calming effect.

It is not sustainable to use a starch-free diet mainly because I am always hungry and should at least consume 1 kg and a half of sugars between honey and fruit ... as NET carbohydrates although I admit it keeps me more awake and with better brain functions than starch. rice / potatoes. For a week he had also worked muscle miracles because he had completely awakened my muscles ... after all he stopped and went back to his usual homeostasis.
Very frustrating because almost all supplements work for a few days then it's like drinking water .... no effect.

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[Motorneuron]

I found this study really interesting ... so I remembered that my mom had 200mg progesterone in soft capsules. I opened it and put it with some vitamin E ... I have no idea how much I absorbed through my wrist ... maybe I put in too much but after half an hour I had one of the most greats of recent times and a slight recovery on muscle tone! fantastic...! is there a risk of damaging the androgenic profile?

Progesterone and Allopregnanolone Neuroprotective Effects in the Wobbler Mouse Model of Amyotrophic Lateral Sclerosis - PubMed

Progesterone regulates a number of processes in neurons and glial cells not directly involved in reproduction or sex behavior. Several neuroprotective effects are better observed under pathological conditions, as shown in the Wobbler mouse model of amyotrophic laterals sclerosis (ALS). Wobbler...

pubmed.ncbi.nlm.nih.gov

 

[Motorneuron]

Maybe it was mistranslated, I meant a neurological recovery as if there was no disease.

 

[Motorneuron]

What increase SOD1 ?

 

[ironfist]

Feasibly this? My experiences with reversing possible pre-ALS - Medicine & Diseases

 

[Lollipop2]

I found this study really interesting ... so I remembered that my mom had 200mg progesterone in soft capsules. I opened it and put it with some vitamin E ... I have no idea how much I absorbed through my wrist ... maybe I put in too much but after half an hour I had one of the most greats of recent times and a slight recovery on muscle tone! fantastic...! is there a risk of damaging the androgenic profile?

Progesterone and Allopregnanolone Neuroprotective Effects in the Wobbler Mouse Model of Amyotrophic Lateral Sclerosis - PubMed

Progesterone regulates a number of processes in neurons and glial cells not directly involved in reproduction or sex behavior. Several neuroprotective effects are better observed under pathological conditions, as shown in the Wobbler mouse model of amyotrophic laterals sclerosis (ALS). Wobbler...

pubmed.ncbi.nlm.nih.gov

Funny I was going to suggest progesterone. I can’t see how it would hurt it can recover the brain from a serious injury. Not quoting science here just my intuition.

 

[Motorneuron]

Other dietary suggestions or through supplements / medications for motor neuron support?

 

[Motorneuron]

This is a very interesting study because it makes us understand the complexities of the metabolic patterns and pathways involved in motor neuron diseases ...

 

[Motorneuron]

Bump. Any help Is appreciate

 

[Inaut]

Molecular hydrogen/browns gas. It's a great anti-inflammatory and can be breathed all day long (if you can afford a good machine).