If money were no object what would the most knowledgable people here try if they were diagnosed with
Amyotrophic lateral sclerosis? Asking for a friend 
My dad got ALS and tried all kinds of stuff, held on for 5 years. I know a few things. Lithium is supposed to slow it down a lot. I gave dad a pint of kefir ( I had a culture going for 5 years with raw goat milk) every day and he was actually getting better in the end. The doctors decided not to treat his prostate cancer because they thought heād die of the ALS. He died of metastatic prostate cancer. It moved to the bone. His ALS was getting better and the doctors were shocked.
So it may have to do with the microbiome. Iād try kefir made at home (the cultures are better). Also could do something with a fecal transplant. Iād love to see it tried without having to see it tried if you know what I mean.
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Ha ha ha - yes I do! That is heartening. There is a goat farm near us where we can get raw goats milk. I might have to organise a visit.
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The doctors decided not to treat his prostate cancer because they thought heād die of the ALS. He died of metastatic prostate cancer. It moved to the bone. His ALS was getting better and the doctors were shocked.
We also found a significant inverse relationship between prostate cancer and ALS mortality.
Published in 2012. Sounds like a callous decision to me. Heās gonna die of something anyway, so why bother about the cancer?
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So it may have to do with the microbiome.
Below is full text study.
They used sodium butyrate.
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Thatās beautiful. I honestly never looked at it since he died in 2007. Maybe I should have shared my findings. Thanks Juan
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Amazing research that you have found here, thankyou!!!
Sodium Phenylbutyrate and Taurursodiol: MedlinePlus Drug Information.
I would try sodium butyrate and ox bile (taurursodiol is just bile acid.
Wouldnāt acarbose work for the butyrate? How about inulin? Or butter.
Is the other one tudca?
I started thinking about ALS and wondered if it were essentially a mitochondrial problem.
I did some looking around and it seems that there is evidence that points this way. In writing the post linked to below I put in some questions to chatGPT and the share for the detailed response to those is also linked below.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2834877
Use of Common Psychiatric Medications and Risk and Prognosis of Amyotrophic Lateral Sclerosis
Findings In this case-control study including nearly 9000 individuals, prescribed use of anxiolytics, hypnotics and sedatives, or antidepressants was associated with a 34%, 21%, and 26% higher future risk of ALS. Prediagnostic use of such medications was also associated with poor prognosis after ALS diagnosis.
ā possibly a reduction in endogenous melatonin.
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Study finding an association between melatonin use in ALS patients and slowed progression of disease and prolonged survival:
Melatonin users had a significantly decreased annualized hazard death rate compared to the non-melatonin users [HR=0.241 (95% CI 0.088 ā 0.659), p=0.0056]. The melatonin users also had a slower rate of decline of sALSFRS score (t=2.71, p=0.0069) and change of percentage of predicted FVC score (t=2.94, p=0.0035) compared to the non-melatonin users.
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Probably the best treatment for ALS will mirror the best treatment for PD.
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And I would guess any treatment that works to prevent both ALS and PD ā or at least to slow down disease progression ā might very well also preserve motor neurons (and āmotor unitsā) in the aging body in general. In fact, I had found out about the above ALS paper a while ago, because I thought by looking for treatments for ALS I would also find treatments to slow that aspect of aging (motor neuron loss).
I am currently working on a poster to be presented at the British Society for Research on Aging conference in September (2025). Part of that will look at the energy usage of neurons and in particular motor neurons and dopaminergic neurons particularly in the substantia nigra. These have a very high energy usage and also depend greatly on OxPhos. That means they have a big load of ROS which needs to be neutralised.
Once things start going wrong then the repair systems also start failing.
I am wondering to what extent the failure to maintain myelin in MS has similarities. It has similarities, but not so much as to say it follows exactly the same pattern. In both PD and ALS/MND there is some link in many cases to CSF flow. (and the availability through that of higher levels of melatonin and potentially other substances in CSF, but melatonin is both an obvious candidate and something with experimental results - measurement - in PD).
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