Acetyl-L-leucine follow-up

[WhyRBD]

Just checking to see how those are doing who have starting supplimenting ALL? I am collecting data and would like to know if having any effect and if so on what symptoms. It would be great to know if you suffer from iRBD. If so and using ALL to regulate night time events, what are you using to determine frequency and intensity of events: Camera, self, or partner? Any and all other information you might think would be helpful, please share .(dosing with weight and effects are great) I myself am just waiting for my DatScan and then I will be testiing in conjunction with my RBD Diet. Great possibilities when this compount is integrated into a holistic plan. (you can share publically or privately via DM if you prefer)

[PDinAZ2024]

I considered it but haven't yet. Saw one post about side effects and decided against

[Fed1000 in reply to PDinAZ2024]

Sorry, what post?

[PDinAZ2024 in reply to Fed1000]

healthunlocked.com/cure-par...

[Alegna1]

Hey, my husband supplements appr. 700 mg daily since about 2 month. There is novrecognizrd sideeffect, so far also no change in tremor symptom. 😊

[Fed1000 in reply to Alegna1]

Hi Alegna1, do you mean Acetylleucine supplements?

[Fed1000]

Well done WhyRBD! I taking Acetylleucine in the form of Tanganil 500mg. for 15 days. I don't think I have benefits related to Parkinson's, but neither do I have any side effects. It's probably still early. Speaking of side effects, consider that this product has been used in France for many years.

[Fed1000 in reply to Fed1000]

I correct mysel: they have been using in France for many years.

[WhyRBD in reply to Fed1000]

do you suffer from iRBD

[nop9]

i took tanganil for 6 weeks and improved a lot. zero side effects. for some parts could be placebo. but at the end i could walk 4km smoothly and without thinking about my legs much. before i had one stiff leg and got hip pain after 1-2km. the last two weeks i had replaced tanganil with acetyl -l-leucetin powder from china step by step. yesterday i waked and my leg was stiff again. so im back on tanganil only now. i will see how it goes..

[PixelPaul in reply to nop9]

How much are you taking?

[nop9 in reply to PixelPaul]

tanganil: 10x500mg/day

48y old, first PD diagnose 4 years ago. last year positive DatSCAN. i do not suffer from iRBD.

edit: i am on 300mg amantadin. (i was able to reduce from 400mg while taking tanganil) no levodopa

[Fed1000 in reply to nop9]

10 pills?

[nop9 in reply to Fed1000]

yes 10 pills=on stripe i take spread out the day. now my walking seems to recover again.

[PixelPaul in reply to nop9]

Note that the case study used a daily dosage of 5g Tanganil (10x500mg tablets).

[Fed1000 in reply to PixelPaul]

yes, it’s right. Thank you very much

[Fed1000 in reply to nop9]

ok, thank you very much.

[Gcf51 in reply to nop9]

How much acetyl -l-leucetin powder were you taking (half of tanganal is an inactive ingredient).

[Rufous2 in reply to Gcf51]

Actually, half of Tanganil is not inactive. The D-enantiomer may not be the body's preferred form, but once ingested it's anything but quiescent, as this study showed; pmc.ncbi.nlm.nih.gov/articl...

"In conclusion, firstly, the L-enantiomer–which is the pharmacologically active form in models of acute vertigo–has different pharmacokinetics when administered with the D-enantiomer as the racemate (N-acetyl-DL-leucine) compared to administration as the purified L-enantiomer."

In other words, the N-enantiomer doesn't just sit idly by and watch the  L-enantiomer do it's thing; it actually changes the way the latter is used. Initially, this influence could lead to higher levels of acetyl-L-leucine in the brain and appear to be a good thing. But that could change with continued use, a concern the researchers expressed next; 

"Secondly, we found evidence for an accumulation of the D-enantiomer, which would be exacerbated by chronic dosing of the racemate, with unknown and possibly unwanted deleterious effects on cell function." 

 Finally they conclude; "Thirdly, the results of this study, taken together with the regulatory guidelines of the FDA [17] and the EMA [18], strongly supports the research and development of isolated N-acetyl-L-leucine." Other researchers seem to agree, and Aqneursa, the new medication for Niemann Pick disease contains acetyl-L-leucine only.

I urge everyone who's interested in these substances to read this paper carefully. I believe you'll come to the same conclusion I did; that it's tempting, but foolish to assume that an adequate dose of acetyl-L-leucine for our purposes is simply half that of Tanganil. It's certainly possible that will prove to be the case, but dosing guidelines for Aqneursa suggest otherwise; they call for 4 grams a day, only one gram less than that used in the RBD study employing Tanganil. 

[Rufous2 in reply to Rufous2]

Thought I should add.....I don't mean to "dis" those who have chosen to take Tanganil. It seems to be safe, at least in the short term, and there is actual data on dosing available, even if it's in RBD, not PD patients.

But for those who can't get Tanganil (everyone in the US?) and are intrepid enough to try acetyl-L-leucine, it's a different story. They have to guess how much acetyl-L-leucine to take. Hence my caution that the "effective" dose for an individual could be anywhere from much smaller than, to equal to, the Tanganil dose.

[CaseyInsights in reply to Rufous2]

For those interested here is a dosing schedule for acetyl-L-leucine. This could be a starting point.

Weight ≥35 kg

Morning: 2 grams

Afternoon: 1 gram

Evening: 1 gram

reference.medscape.com/drug...

[WhyRBD]

Rufous2 I agree the research supports effectiveness in those with iRBD and not specific to those suffering from PD. I also agree it would not hurt to try but do expect different results

[WhyRBD]

And do you have diagnoised iRBD or PD

[Gcf51 in reply to WhyRBD]

Repost my question. Has anyone benefitted from acetyl -l-leucetin or Tanganil (DL), or not ?

Diagnosed PD.

[Flipper_B]

Hi,

Have been on Tanganil for 3 months. No effect whatsoever so far. But I have very mild iRBD with just talking in my sleep 2-3 times a month and it seems difficult to get rid of completely. Will do an MRT scan in april as part of a clinical trial and then I will see how my brain is doing. Also ordered the pure L enantiomer now because it is very hard to get Tanganil, it is out of stock almost everywhere in France. I am travelling to France frequently so I can buy over the counter at pharmacies but many of them are out of stock.

[Flipper_B in reply to Flipper_B]

Perhaps should add that I also have RLS (restless leg syndrome) and that has almost disappeared during the Tanganil treatment, which helps me to sleep much better. But the dream events still occur.

[WhyRBD in reply to Flipper_B]

Do you eat wheat and grains?

[Flipper_B in reply to WhyRBD]

Very scarcely, trying to avoid since June 2024

[WhyRBD in reply to Flipper_B]

I have found grains drive dream content and motion. I have been able to eliminate iRBD events with diet (lectin free) and a stack of pre and pro biotics. The key is to heal the leaky gut. The diet reduces night event during this period. It is early, but it looks like it took me 4 years to repair the gut. Running more test to confirm.

[Flipper_B in reply to WhyRBD]

That’s interesting and since June 2024 I avoid carbohydrates, sugar and alcohol, and it seems to work well. I haven’t checked specifically for lectins but will definitely do.

The most important factor for me is exercise. If I don’t do HIT training in 3 days, I immediately get the dream events. I tried several times. Two days in a row is the maximum I can be without. It doesn’t matter if I walk 15000 steps instead per day. So I do HIT on average 6 times a week.

[WhyRBD in reply to Flipper_B]

Lectins are very specific proteins that can traverse the vagus nerve from the ENS to the CNS. In addition lectins have the ability to bind and transport misfolded asynuclean proteins in its movement. All of this only matters is you have low SCFA (LEAKY GUT) as this allows the lectins and misfolded proteins to enter the circulatory system and access the vagus nerve.