D3 discussion from Butyrate thread

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Re: Butyrate

Hope, you are grossly misconstruing the manuscript, which does not present a scientific rationale for d/c'ing Vitamin D3. Here is the abstract for those interested.
 
Re: Butyrate

As fair as i know there is no evidenz that increase D3 works, an D3 increase raise (i think) enzym which speed up ALS progression, i will read the full text paper again and then link to the "enzym" which is bad for PALS.
 
Re: Butyrate

They weren't testing the hypothesis that "D3 works." They explored the hypothesis that low levels are markers for disease progression, for which is there is some evidence. For those who are deficient, as many PALS are, not only secondary to immobility, the study was underpowered to discern if alleviating deficiency improved outcomes, but studies in other disease states would suggest there is, if only in terms of fracture risk in trauma.
 
Re: Butyrate

Where do you get vitamin d increases 25- hydroxycholesterol? I can not find it in the link or in a search. I agree if it does it would be an issue I assume you do have a source for your assertion and are not confusing 25-hydroxycholesterol with 25-hydroxycholecalciferol?
 
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Re: Butyrate

I have the info from an friend, he is fit in neurology an has ALS, but to be honest i first have to check the info, for sure. But because the study to vitamin D hase not suggest an effectiveness i don't think its necessary to supplement vitamin D. Or has anyone here noticeable improvements of vitamin?
 
Re: Butyrate

Thanks for sharing. I am working on getting access to the full text the title is concerning but I did not get confirmation from the abstract.

Benefits of d3 - some of us - me included are d deficient. I was before this ever started. D deficiency can cause a number of problem.

D is also an anti inflammatory

And they looked at it because it does help other neuro diseases

I am a patient at MGH where the D study came from. I am already planning to ask next month about d dosing and whether it should be just enough to treat deficiency
 
Re: Butyrate

Hi,

sure if it works for you just do it! I'm not deep into the effects of vitamin D on ALS. I takt for anti inflammatory masitinib and in the next week i will try perampanel. I think its important that we check biomarkers like NF-L but its not easy to find an lab which make the test. I'm trying at the moment to make the ELISA in my own, but the equitment is not cheap...

May vitamin D helps some PALS, may it doesn't effect some PALS and my it bad for some PALS, i don't now, we have not many evidence about it, each PAL an try it for himelfs and if it works, he can do it.

Regards
 
Re: Butyrate

Were I a PALS, I would not supplement D3 apart from correcting deficiency, but this is a very complex topic. As to the correlation Hope reports, so far researchers have found elevated 25-HC in the CSF of PALS, reduced 25-HC in the blood of MS patients, and lots of other things. On the evidence to date, it is suspected that these levels reflect dying neurons rather than causing them. I have attached a recent paper that describes some of these findings.
 

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Re: Butyrate

Hope what the paper said was 25- hydroxycholesterol can be used to synthesize 25-hydroxycholecalciferol not the other way around. Also, the paper was presenting chemical pathways for lab studies not human physiological processes so even if it said what you thought it would be unclear what it would mean to us.

Thank you for providing the link. It is good to be able to read the source
 
Re: Butyrate

I'm not sure what to do regarding D3. It was one supplement I was sure would not hurt. I found out I was deficient about 7-8 years ago during a fibromyalgia workup. My level was 20. My GP has a lot of MS patients and she said they do very well with levels around 60-70. I started on 5,000 IUs a day for a couple of years. I got my level up to around 50, then I backed off to 5,000 IU once or twice a week. Six months later, my level had gone below 40 so I increased again.

Since diagnosis, I've been on 5,000 IU a day. I haven't had it checked in a year. I guess it's time.
 
Re: Butyrate

I'm really concerned about this D3 discussion - should we stop taking Vitamin D? Does it speed up progression? I've been giving my husband D3 2000UI daily for about 2 - 3 months now.
 
Re: Butyrate

On very limited evidence, too much D may be as bad as too little (same as B6, for example) and D may help more in early disease, with higher levels detrimental in later disease, possibly because they reduced something else over time.

I don't think 1000 IU 2x a day is going to be "too much" but you can get levels drawn. How high to target no one knows, so I would go with something conservative based on what we think we might know.

5000 IU, Kim, would for me definitely call for a blood test and reconsideration esp. since you're in sunny Florida.
 
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