Confused by Deanna Protocol ingredients

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notBrad

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Hi All,

The latest I've read has tended to center around NO (Nitric Oxide) being bad for PALS. So when I see some of the ingredients in the DP several of them seem to promote the production of NO (AAKG, Arginine, etc...).

What am I missing here?

Or put another way, what would be the general consensus on a good solid round of supplements that would possibly help but definitely NOT have the potential for harm?

Thanks any edumacation, thoughts, etc...
 

lgelb

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Brad,
I doubt you'll find that consensus. Dietary/supplement intake rarely translates 1:1 into cellular supply, access or movement of a given mineral, hormone or compound. And what we think we know often maps back to blood levels, which can only reflect 1-2% of circulating levels. So reading up on possible biochem mechanisms (that in themselves reflect a series of environmental as well as system triggers) to pick pills and liquids to ingest is highly speculative, though most of us have done it.

Re the DP, I'll only say that the measurement error around this process is compounded when you have a long list of supplements and long-term exposure. To me, homegrowning it right means following the research and being thoughtful about your own history, diet, labs and symptoms, not grabbing a prefab list from...well, anyone. Truth is, most supplements can harm if your body is already well-stocked. It's often ratios, not absolute amounts, that are most important...look at the omegas, vitamins, electrolytes, hormones, so many things.

Just one example: dogmas like "vitamins prevent cancer" gave way to vitamin A, vitamin E and/or selenium supplementation may increase cancer risk, though we're pretty sure at the moment that maintaining certain levels of vitamin D is good. And the DPers handing someone who lives on ice cream and has no movement the same list as someone who walks every day and eats sandwiches is just silly. Not to mention that the body in distress is even less likely to process a boatload of chemicals in an optimal or predictable manner.

I'll say generally that like any healthy person you should monitor ratios of the Bs to each other, D and calcium, potassium/sodium/magnesium, monitor thyroid, adrenal and pituitary function; get your liver function tests done if you're on riluzole, eat "real food" rather than junk to keep your weight up, stuff like that. There may also be, depending on your personal circumstances, justification to try supplements like turmeric, fish oil, PQQ, cinnamon zeylanicum, ALA and such. These more likely ameliorate inflammation generally rather than providing any specific motor neuron support.

But all in all, having ALS gives you enough health issues to worry about, so one way to think about it that whatever you drink, eat and otherwise ingest that makes you stronger could help you live longer. And that rhymed to boot.
 

MaxEidswick

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if you haven't, go to alsuntangled dot com.
 

notBrad

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Thanks Guys. I've spent a lot of time on ALSUntangled and also agree re: the dogma aspect/approach.

My approach I think will be to do the normal supplements I've been taking for years in moderate dosages (that's one thing that scares me about some of the protocols - the large dosages required, that just can't be good for you).

I've taken a Acyetyl-L-Carnitine/ALA combo for years as well as "normal" dosages of cinnamon, Glucosomine/Chrondroitin, Fish Oil, CoQ10 and assorted vitamins and will just stick to those. Although I think I will add the GABA as what I've read seems to be pretty good, ditto for turmeric.

I've also started with the L-serine as there seems to be some good anecdotal reports and nothing "bad" that I've seen so far.

Thanks again both of you for the (always) excellent advice. BTW, nice rhyming there, you gonna start a career as a rapper? What'll be your "street name"? The Notorious LGelB, Snoop Gel Dogg... Just throwing those out there to get you started... Whatever route you go just stay away from the Kardashians, those people are trash...
 
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