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bear1973

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I've spent a fair bit of time reviewing the info at ALS Untangled, and from what I know, it's a reputable site for PALS re: alternative methods of treatment.

The site dismisses most of the remedies out there, although does suggest that "further research" is warranted on some items - for example: coconut oil, cannabis, and recently, MitoQ.

My question is: If there is some evidence supporting that these methods *might* work, then why not use them (possibly all) with the possibility that they might be making some kind of impact that a later study might prove? The site is pretty clear about the risks, so it's doubtful they would recommend something that might increase progression. I ask this because I figure a) with a disease like this why not...what have I got to lose and b) if I'm willing to spend (with the help of drug coverage) ++ $ on Rilutek, which only slows progression by about 10%, why not use, for example, coconut oil, which costs peanuts and *might* slow progression by the same amount?

Curious to know thoughts out there.
Thanks, Bear
 

Nikki J

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If you browse here you will see a number of us take various things in the hope of helping somehow. To name a few things acetyl l carnitine
L serine
B12 ( methyl)
Tudca
You will certainly find threads on these but there are others as well lunasin is being looked at right now for example.
You need to research for yourself and decide what makes good sense. So many things are proposed you could spend all day and all your money and not take everything you read about. Have you discussed with your neurologist? Not all are open to this but some are
 
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GregK

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You mention cannabis. If you search you'll find that a few of us are using CBD and THC.
 

bear1973

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Thanks for mentioning those, Nikki.

Has anyone had any success with anything? I read a post from Max from about a year ago reporting some more strength with using L-Serine...curious to know if you're still having positive results?
 

bear1973

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Oh....and haven't discussed with my neuro, although my SW says that anything on ALSUntangled is reliable info....she says, for example, that she would take coconut oil herself in had ALS.... I am willing to try ANYTHING that may slow progression provided there is no risk of increasing progression....
 

bear1973

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Note: disregard post re: Max having success with L serine. Mis-read post...
 

tripete

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My wife has looked at a ton of alternatives, read a ton of books, and keeps changing my plan. Coconut Oil as a massage and consuming it can help with cramps (for me it does not stop them though), I have found taking Alka Seltzer twice daily really takes away the large majority of my mucus issues, we are now on the apple cider vinegar thing. I do all of it for her (she feels that she is proactively helping), it is not slowing down anything but does aid in relieving some symptoms. I hope something helps.
 

MaxEidswick

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>I have found taking Alka Seltzer twice daily really takes away the large majority of my mucus issues

Ditto that!
 

notBrad

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I take the following;

L-Serine
GABA
AAKA
Creatine

Acetyl L-Carnitine
Alpha Lipoic Acid
Coconut Oil
Cannabis
Vitamin E, D & B12 (methyl)
Fish Oil

Those in bold I take mixed in a protein shake every AM

In addition to Riluzole, Nuedexta and Ativan.

I definitely notice a difference. I had quit taking them for a while and then started back and with in a few days I had a substantial improvement in hand strength. Prior to the restart when I'd have a drink at night it'd take both hands to pick it without dropping it and to drink from it. Now I can pick it up with one hand without so much as a quiver.

I don't think they help the ALS so much as give a boost and some protection to what is "left"...
 

bear1973

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notBrad,
That is great to hear. If you wouldn't mind, I would be curious to know the amounts you take of each (except for the cannabis :)). Who knows.....maybe that combo is significantly slowing progression....?

I am looking to get on my own regiment.
 

Green Queen

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Peter, there's three little words in your post that makes me 100% certain you love your wife. Apple. Cider. Vinegar.
It's supposed to do wonders for so many things. Except for me. Not something I could willingly get used to. Good on you for trying.

Brad you sound like a walking advertisement for the local chemist! There's so much going on there, I'm so glad you find relief with it.

God bless, Janelle x
 

notBrad

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Sure, and also I try and exercise on a regular basis including resistance (weights, bands, etc...) BUT only moderately NOT like I use to.

BTW, these amounts are determined by nothing more than that's the amount in a heaping teaspoon and I am too lazy to keep up with different spoons and amounts... (Which is why that career as a research scientist never panned out - "Oh my god Dr. Hale you've cured cancer! What did you do? 'Oh, mixed some of this with some of that and added a pinch of that stuff in the blue bottle, no - the other blue bottle'"

And I drink a lot of water during the day...

Creatine - 5+ grams (probably closer to 7)
AAKG - 3 grams
L-Serine - 3 grams
GABA - 3 grams

Vitamin E - 800 i.u. 1xDay
B12 - 500mcg 1 or 2 x day
Vitamin D - 1 x Day (probably 400 i.u.)

Acetyl L-Carnitine 1,000 mg 2xDay
Alpha lipoc Acid 1,200 2xDay
Coconut oil 2 large capsules 2 x Day

Fish oil - approx 2 grams 2xDay

Cannabis - two types, one is a oil that I mix about a drop the size of a grain of rice with some honey and take that every day. It's very high in CDBs ans doesn't get me very "high" and lasts about 6 hours or so.

The other is once the day wears down and I can be "stupid" 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...
 

notBrad

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Peter, there's three little words in your post that makes me 100% certain you love your wife. Apple. Cider. Vinegar.
It's supposed to do wonders for so many things. Except for me. Not something I could willingly get used to. Good on you for trying.

Brad you sound like a walking advertisement for the local chemist! There's so much going on there, I'm so glad you find relief with it.

God bless, Janelle x
LOL.... Yeah it does. Although actually I was taking all except the L-Serine, AAKG & GABA prior to being diagnosed. I played a LOT of sports and was very active so over the years it was a combo that helped me avoid injuries and recover faster.
 

Nikki J

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FWIW I was told at clinic last week to increase lserine to 15 grams twice a day ( the directions for a new start are to start with half of that and work up) that is highest dose used in the clinical trial.
 

notBrad

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Nikki, Let me know how that works for you please.
 
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