Alternative Supplements

[AP1967]

Has anyone tried L-Serine or Acetyl-L-Carnitine?

They were referenced in Dr. Bedlack's NEALS Webinar: Promising Alternative and Off-Label Treatments for ALS.

My neurologist sent me information on these 2 supplements.

I am curious if anyone has tried either/both of them, is still on either/both of them, effects, etc.

If not these, are you on other supplements aimed at delaying progression?

Thanks!

 

[lisa g]

I have taken both Acetyl-L-Carnitine 3,000mg and L-Serine 2,000mg a day for the last 3 years. Has it slowed my progression, it's hard to tell. I've been relatively slow progression but has sped up over the last 2 months.

 

[Marieb425]

I’ve been giving my PALS N-Acetylcysteine for a few months. I don’t know if it’s slowing anything down as it’s kind of hard to know with his progression - quickly went to bulbar/respiratory.

N-acetyl-L-cysteine improves survival and preserves motor performance in an animal model of familial amyotrophic lateral sclerosis - PubMed

Increasing evidence implicates oxidative damage as a major mechanism in the pathogenesis of amyotrophic lateral sclerosis (ALS). We examined the effect of preventative treatment with N-acetyl-L-cysteine (NAC), an agent that reduces free radical damage, in transgenic mice with a superoxide...

pubmed.ncbi.nlm.nih.gov

I will have to read about Acetyl-L-Carnitine.

 

[AP1967]

@lisa g , From where do you buy the supplements? And in which form? I read that one comes in both a capsule and a powder. The doses are high so seems like a lot. Do you have any GI issues or other side effects?

 

[lisa g]

AP1967, I buy my supplements through Amazon and use them in capsule form. I haven't had any GI issues. I worked my way up to the current dosages.

 

[Loulou22]

I’ve been taking Acetyl L Cartnine for about a year, along with methylcobalamin B12, Astaxanthin, and Tudca… but in light of recent trial results, I may stop the Tudca. I’ve also just ordered Mito Q and hoping to start it soon.
Whether or not they help, who knows but it helps to feel like I’m doing something.
I’ve also been on Triumeq for about 5 months, which is still in phase 3, and is very expensive off label here in Australia.

 

[SMJgal]

I started on 1000 mg Acetyl-L-Carnitine last month at my neurologist’s suggestion. Too early to tell if it is slowing progression, but no side effects so far.

 

[santimo]

Based on ALS untangled web page information, I'm on acetyl l carnitina (1.5 mg daily) and ashwaganda 0.8 mg daily. Not really hopeful but since it's cheap and safe why not try.

 

[lgelb]

"Safe" without qualification is a rare characteristic for medicinal flora, and ashwagandha is no exception. It can severely damage the liver, its safety in long-term use hasn't been demonstrated, and it interacts with many conditions and drugs. Anyone thinking of trying it should double-check the latter before diving in.

ALC has potential down sides as well, so the same caution applies.

 

[santimo]

I should have used "safe" more cautiously, but I still stand by it being relatively safe, by all I have read and discussions with my doctor.

 

[lgelb]

Let's put it this way -- water at a moderate dose won't hurt anyone.

ALC and ashwagandha don't fall into that category, whatever you want to call it. Some people should straight up not take them.

 

[santimo]

OK, but wouldn't that be true for any supplement? Either way I enourage anyone to learn about any supplement before taking it and have the OK from their doctors.

 

[lgelb]

Yes, it absolutely would! The reason for their doing anything helpful often rests with chemical profiles that are similar to rx drugs and biologicals. So just as you would check interactions for starting a new script, the same thing for starting a new supplement, whether in a bottle, as a tea, etc.

 

[Hal]

I’ve been taking ALC for a while based on separate recommendations from MGH and Mayo