> ALSUntangled has already finished the Deanna Protocol analysis:

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EJTUNow

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> ALSUntangled has already finished the Deanna Protocol analysis:
>
> ALS Untangled No. 20: The Deanna Protocol
>
> My PAL is currently on it, only having some of the main supplements, with no noticeable benefits so far. Anyway we will keep on it till we finish the supplements we bought.
>
> Regards

Nacho
 

pearshoot

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i dont disagree with anything als untangled wrote about deanna protocol the problem is what they wrote can be said about most every drug tested for als. i think both boil down to some respond, some don't know, some see no effect. i don't do the deanna protocol but started vitimins, supplements, homopathic medicine, and tea before official diagnoses. i use zyto testing to determine what to take. western medicine offers nothing. eastern medicine offers hope. i have completed two drug trials, one helped me but may not helped others, second one i can't tell, but may have helped others or not at all. many signed the petition treat us now the question is WITH WHAT
 

pearshoot

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yesterdays post went to mod sent private msg
 

Nighthawk

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That's bad news for people (PALS) who were already on that Protocol.

Their conclusion is grim (quote): " Thus, at this time, ALSUntangled does not recommend the Deanna Protocol to patients with ALS".


NH
 

here4her

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Well, I don't know. It seems to be working for dbltree. If it helps just only one person, is it not worth a try? And what about Deanna? Did they ask her for her opinion? No one has said, or is claiming, that this is a 'cure' for als. It is currently one of the only, if not 'the' only thing that has even come close to helping with this disease.

So what does the ALSUntangled group have to offer? Anything besides criticism? While I appreciate the 'research' on their behalf, just because it may not yet be publishable data, does that deserve their discouraging remarks for people who are desperately searching for anything that will slow down this progression, or improve the quality of life while it lasts?
 

pearshoot

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so what does riluzole have to offer, 2-4 months and $1500-2500 a month drag. i sincerally doubt any without insurance use it. western medicine offers nothing. eastern medicine offers hope, as it gets your body healthy so your amazing immune system can fight whats going on, increase energy, fight fatigue just to name a few things. its accepted by most there is nothing you can do to slow, stop, or reverse als but isn't it better to face it feeling good and healthy. my official diagnosed is feb 2010, but if i had not delayed seeing a doctor for five months it would have been much sooner as the neurs said als from the begining. been in two drug trials, one worked, the year long one can't tell just like supplements
 

mich5

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When ALS untangled began their investigation into DP they contacted the tedones to obtain proof Deanna had ALS and her progression rate and turnaround rate. They had statements on ALS untangled that they contacted her and another blurb 45 days later that the tedones hadn't gotten back with them as yet. Their report reads like the tedones never got back with them. There's one statement in their report, but it's not clear if it's from the CBN story or from the father contacting als untangled, that the father said Deanna was diagnosed by 'a neurologist' (no name provided) and never went back for follow-up care. I'm not saying whether it does or doesn't work, (i, too, believe this is a complex disease and what works for some doesn't work for all) but of the 20 or so pALS I know personally (including myself) - none of us would have any trouble providing proof we were diagnosed. Don't know why they wouldn't have cooperated.
 

Nighthawk

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@Here4Her:

I know exactly what you mean, and I'm with you on that.
Just thinking that as the genetic makeup of every human being on earth is different, what may work for some, may not necessarily work for others.

I know it has worked OK for "dbltree" as he's been reporting, but I've also read reports on other ALS boards from PALS that have been trying it for some moths and it hasn't worked for them as it has done for some others.


NH
 

TerryG

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Yep, tried most of those on the supplement list. Sure, earlier on we felt they made a difference but as the disease
progressed the effectiveness was less obvious. We found body builders protein powders more cost effective, ended
up on an ‘undenatured whey protein’ which is supposedly the most efficient way of raising Glutathione levels plus
these powders have many vitamins and minerals. My pick - Vital Strength, WPI.
Spent many hours researching mitochondria dysfunction earlier on but felt it’s a consequence of the disease and has
nothing to do with the cause, my opinion. Since which time, have been researching ‘activated Microglia’, which are
considered the primary immune cells in the Central Nervous System and the intensity of their activation is associated
with the severity of motor neuron damage in ALS. I am more or less, of the opinion that they are not only ‘activated’
but they may also be ‘unregulated’, stuck in the inflammatory phase and not able to switch to the anti-inflammatory
phase. This is the area, I believe, medical researchers should be concentrating on.
 
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