Alternative Methods

[lgelb]

Before people jump in for that kind of cash, maybe start w/ some Lunasin-enriched cocoa powder (considerably cheaper, available on azn), see how things progress?

I'm sorry, but ALS Untangled characterizes pretty much everything but snake oil as worthy of further study. I read it, and wouldn't take it as a positive review. If I had first seen it in a journal, I would have thought, "they're trying to be polite; it's ALS." I don't indict rays of hope for scanty data -- that's how every therapy begins -- but the commercial aspects and limited anecdotal data, coupled with the flaws in the "index case," a guy who somehow was "cured" of "MG" in 2 months, don't inspire confidence. The Web site with the "videos deleted because of government censorship" messaging...don't get me started. Pure salesmanship.

If I had a nickel for every nutritional component of some "healthy" substance (in this case, soy) that has been deemed antioxidant, anti-inflammatory, and the next great thing, I wouldn't need to work. I have seen both OTC and rx options that looked untouchable tumble off the pedestal all too quickly.

In this case, the glucose/lipid processing aspects of ALS, still being explored, could call the value of an estrogenic peptide with likely effect on cholesterol ratios into question. I understand the ticking clock, believe me, and Larry certainly was on supplements, but I would start this one slow if at all.

Best,
Laurie

 

[ShiftKicker]

I hope it is really effective in halting your progress. $1000/m is a little spendy for me, but I would consider it if people here were gaining benefit.

 

[anderkling]

We thought we'd give it a month, and see what happens. We obviously would not continue for months without seeing some improvement worth spending this kind of money.

 

[4tloml]

notBrad--

I'll usually take a few hits off the vape over the course of the evening along with a glass of wine or Vodka martini (never more then 2 though).

And that's pretty well it...​

Pretty well it or pretty well lit?! HAHA

Seriously, your plan is very similar to my husband's. He also takes the Ubiquinol. And much higher dose of B-12 (5000mcg methylcobalamine under the tongue). We still think the most effective compound has been the cannabis. As we traveled, a few times it was the only thing he couldn't take. The difference with him off and then back on it has been substantial. Sure wish clinical trials could get started in states where it's already legal!

 

[bear1973]

My apologies Charlene - I did re-read the study on Lunasin on they do suggest a small pilot study. From what I've read on ALS Untangled, there are several remedies they don't recommend PALS take at his time - for example, with propofol, they "strongly discourage of off-label use of Propofol in people with ALS at this time" Those are the ones I stay away from....and there are several others they suggest not to take. I think for me, taking something they say has 'promising mechanisms' for benefit that warrants further study is enough for me to give it a shot. Maybe it's partly too because I've just been diagnosed and need a little hope, even as thin as it may be.

 

[Nikki J]

ALSuntangled is a good resource but there are lots of things they have not looked at yet
Acetyl l carnitine showed some benefit in a small study. So did Tudca. There is a current study of l serine just to point out three possible things to look into

 

[bear1973]

Thanks Nikki - I did see the study on L Serine and Tudca that looked promising although not the one on Acetyl l carnitine. Worth a check....

 

[notBrad]

notBrad--



Pretty well it or pretty well lit?! HAHA

Seriously, your plan is very similar to my husband's. He also takes the Ubiquinol. And much higher dose of B-12 (5000mcg methylcobalamine under the tongue). We still think the most effective compound has been the cannabis. As we traveled, a few times it was the only thing he couldn't take. The difference with him off and then back on it has been substantial. Sure wish clinical trials could get started in states where it's already legal!

LOL, Well... There's benefits and then there's *benefits*...

I've actually been planning to add Ubiquinol and it turns out the b-12 dosage is the same (I misread the label).

I agree totally about the cannabis effects and it helps in so many areas (anxiety, spasticity, etc...) as well. It's a shame that so many people that could benefit from it can't because of a failed, idiotic, decades old policy...

ALSuntangled is a good resource but there are lots of things they have not looked at yet
Acetyl l carnitine showed some benefit in a small study. So did Tudca. There is a current study of l serine just to point out three possible things to look into

I've been taking Acetyl l carnitine for years for sports and I can tell you that pre-ALS it made a difference in my performance as well as ability to recover from/avoid injury.

I'm also a big believer in Creatine for the same reason. The benefits and mechanisms are well documented - normal usage, not as an ALS treatment - and I've always considered that there's two tacks to battling this, one is to try and slow or halt the disease and the other is to "help out" and preserve what you have left. The latter is the primary focus on what I take and do.

 

[bear1973]

I'm asking my neuro to refer me to a medical marijuana doc. What strains of cannabis do people find the best? Not looking to get too high (...have been sober for some time from alcohol so I have to be careful)...anything that is high in CBD and lower in THC?

 

[Nikki J]

There is a lot of discussion on the cannabis thread of that issue

 

[bear1973]

All right - will have a look....thx

 

[frankb]

What is a good, reliable source for l serine? Have searched the web and was surprised to find so much availability. I have read that not all brands of supplements are reliable regarding purported contents.

 

[Nikki J]

I get mine through ama zon bulk supplements powder

 

[scaredwifetx]

Hi Nikki,

I am on Amazon and looking at the l serine. What is the recommended amount per day or what do you use?

 

[Nikki J]

For l serine My neuro is currently recommending start at7.5 grams twice a day and work up to 15 grams twice a day. That is the highest dose that is being used in an ongoing trial. This is a change upwards from what she had previously told me and I have not yet made it as there were other things changed in my meds that visit and I am only doing one thing at a time