Simple modified amino acid stopped the on... - Cure Parkinson's
Simple modified amino acid stopped the onset of Parkinson's disease in the early stages
A search of Acetyl-DL-leucine yields: AI; Acetyl-DL-leucine (ADLL) is a medication that's been used to treat acute vertigo and dizziness, and to improve central vestibular compensation. It's also been shown to help with cerebellar ataxia, which is a symptom of some lysosomal storage diseases (LSDs).
Also, yields L-leucine which I am sure is not the same thing.
I wonder if I can get my MDS to prescribe.
Bolt_Upright The linked Article, may be of interest to you -- REM sleep disorder.
Thanks for thinking of me. I am keeping an eye on this.
thanks for remembering! My husband has been taking melatonin for REMSD Which is helpful but unfortunately his PD has advanced significantly. However my brother has REMSD with no PD symptoms. I sent this to him. I wonder if the drug would help my husband anyway? Thanks so much!
Only two patients without placebo control, but a very encouraging report! Patients showed improvement as of the fourth week of treatment. This substance is an over the counter medication in France referred to as Tanganil. In a different trial that used the same dosage, it was uptitrated as follows:
jamanetwork.com/journals/ja...
"a 2-week uptitration scheme (initial dosage of 1.5 g acetyl-DL-leucine per day taking 1 tablet of 500 mg each 3 times per day in the first week, 3 g per day taking 2 tablets of 500 mg each 3 times per day in the second week). Full dosage (5 g per day taking 3 tablets in the morning, 3 tablets at noon, and 4 tablets in the evening of 500 mg each) was maintained for 4 weeks. In the case of adverse events (AE), a down-titration to a minimum dosage of 1.5 g per day was permitted at the investigators’ discretion. Medication intake was at least 30 minutes before and 2 hours after a meal"
Additional detail:
"Acetyl-leucine (AL) has been found to have symptomatic and disease-modifying effects in animal models of lysosomal storage disorders (LSD)... Several formal LSD clinical trials with the active L-enantiomer, including our recent double-blind, placebo-controlled crossover phase 3 trial in NPC8 , found that N-acetyl-L-leucine had rapid beneficial effects on neurological signs and symptoms and an excellent safety profile. The agent enters enzyme-controlled pathways that correct metabolic dysfunction and improves energy adenosine tri-phosphate (ATP) production...."
Avoid alcohol: "re-appearance of dream enactment due to the use of alcohol"
"oral ADLL therapy partially reversed the decline of the DAT-SPECT binding ratio, almost normalizing it after about 2 years of treatment"
thanks for the tip about ‘tanganil’ from france.
I have ordered it.
but are you sure that it contains acetyl-DL-leucine?
Tanganil ® = Acetyl-Leucine
vinmec.com/eng/article/what...
"The main active ingredient of tanganil is Acetyl-DL-leucine along with some excipients such as wheat starch, pregelatinized corn starch, calcium carbonate, magnesium stearate, the volume is just enough for 1 tablet. "
Thank you very much!
then i'll start taking 10 tablets of 500mg = 5 grams after my stay in cuba.
if this were to show an effect after about 4 weeks, it would be a sensation for me. by effect, I mean a partial reversal of the symptoms. I have already stopped parkinson's almost 100% with the alternative healing methods 
By the way, I have been taking 5mg lithium for about 2 weeks, which has improved my already good mood even more!
everything seems to be going well, thank you very much for your help!
how have you reversed your PD?
partly.... it's too complicated to explain here.
my book will be published in english in about 4 weeks, it has everything in it.
here is an older viedeo of mine where some things are explained with english subtitles.
i don't want to brag, but the doctors in cuba are also delighted with my state of health! to be in such good shape here almost four years after my diagnosis and without medication is very surprising. well, i'm investing a lot of time and money to fight parkinson's. but in the end it's the result that counts and i want to prove that i can do it without the classic medication!
I have just looked on amazon.fr but not seeing any tanganil?
Another good Article: Acetylation turns leucine into a drug by membrane transporter switching. nature.com/articles/s41598-...
I come from Germany and the doctors here are very careful and very conservative! The fact that this report was published tells me that the doctors are very sure. I have been following the news on the internet every day since my diagnosis in December 2020. I still don't take any medication and my condition is very, very good thanks to the alternative healing methods I use. I am currently undergoing treatment in Cuba (Havvan/Ciren/Neuroepo). The doctors are thrilled with me! But this news (Acetyl-DL-Leucine) is the best news I have read in years! I'm going to get "Acetyl-DL-Leucine" and take it after my stay in Cuba. tomparkinson.de
thanks PDTom ,
Great news!!!
I think I will look into the topic further and if it does not have major contraindications I could take it.
Congratulations for your successes and for your truly interesting protocol.
greetings from Italy
beautiful pic of Lake Como. I visited last year. It’s quite different in the winter, but still beautiful just the same!
Hi EduGator ,
You are always welcome here on Lake Como and in Italy in general.
The Mediterranean is the ancient home of all.
Another link of the study in question:
intrabio.com/publications/i...
The first signatory of this study is the neurologist:
Wolfgang H. Oertel, MD, PhD
michaeljfox.org/researcher/...
Given his authority, I certainly wouldn't dare interpret or question a single word of his work.
Greetings from Italy
Same subject 4 days apart healthunlocked.com/cure-par...
Thank you for this information. I have ordered the Tanganil product per your link from France. Other than possible gastric issues, no serious adverse effects appear to be indicated. My balance and walking are extremely difficult so I'm interested in how this may help. I will also run this by my neurologist, although I have some misgivings about the medical system.
on't forget to report the results to us. I am also interested!
I certainly will. Thank you
How are you isolating the effects of ADLL to be able to tell any cause to effect associated with its use ? Intriguing results ! Thanks in advance
Are Acetyl-DL-leucine, Acetyleucine, Acetyl leucin, and N-acetyl-L-leucine all the same chemical?
I don't know, but I was vaguely under the impression that the over-the-counter supplement L-leucine converts to acetyl-leucine in the body. Someone else here will know. Please don't take my word for it.
I haven't been able to find any evidence that humans can turn L-leucine into N-acetyl-L-leucine (NALL) but.......it seems gut bacteria can! And apparently, high levels of Desulfobacterota can interfere with the production of NALL and predispose to neuroinflammation. Call me gobsmacked! sciencedirect.com/science/a...
"In this study, we investigated the relationship between gut microbiota and fecal metabolites and their role in the pathogenesis of PD by leading to the depletion of DA neurons and movement disorders in mice. Our findings indicate that imbalanced gut microbial communities and metabolites can disrupt gut barrier integrity, leading to systemic and neuronal inflammation. We provide new evidence for the interaction between gut microbiota and the host, suggesting that Desulfobacterota harms the central nervous system. Furthermore, we demonstrate that the fecal metabolite NALL, negatively related to Desulfobacterota, may have a neuroprotective effect on DA neurons."
It truly does seem that all roads lead back to the gut.
I can't get Tom's link to work and can't find the article on Nature.com. Anyone have an alternate link?
Caution Regarding Use Of Acetyl DL Leucine
In this report, nature.com/articles/s41467-..., Acetyl-DL-leucine in two individuals with REM sleep behavior disorder…,both patients suffered loss of cognition, documented one year after start of treatment. See accompanying image. The investigators stated only one patient suffered thusly and act like this was a coincidence. We cannot afford to be in denial of the actual result.
Both patients reported a substantial improvement in the REM sleep disorder symptoms after 3 weeks of treatment. If a person wanted to try this treatment, a reduction in dosage from 5 grams daily to something much less after 3 weeks is a possible approach.
On the other hand, behind a paywall, we have this report of improved cognition after one month use of acetyl-DL leucine and continuing over 8 months of treatment: link.springer.com/article/1...
"After 1 month he ceased taking acetyl-DL-leucine. His balance remained good for 2 weeks then deteriorated, where as his cognition gradually declined to his pre-treatment status over 1 month. The ‘‘get up and go’’ test was also similar to his pre-treatment performance level. He initiated another month of treatment and the improvements he had noticed in the first month of treatment rapidly returned. He now remains on acetyl-DL-leucine at a dose of 4.5 g per day. He has experienced no side effects over 8 months."
We also have: academic.oup.com/braincomms...
“the symptomatic effects of ADLL were examined in 12 patients with NPC1 who were treated with the oral formulation of ADLL for a month (5 g/day). ADLL therapy in NPC1 patients led to significant improvements in cerebellar ataxia as well as in cognition and behaviour,”
So we have conflicting data from an exceedingly small number of patients. Needless to say there is risk here. Patients who are not badly in need of improvements might be wise to await further data.
The adverse result may have occurred due to the presence of the inactive D enantiomer. This report on the pharmacokinetics of acetyl DL leucine concluded: journals.plos.org/plosone/a...
"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. " (Credit to @Rufous2 for pointing this out) However I did not see evidence for any of this in their actual measurements, which showed complete disappearance of all forms after 8 hours, following a single dose.
Yes, they were both cleared from plasma within an 8 hour time frame. But while they were circulating, the D form reached much higher levels in the blood and muscle and brain tissues, and kept the "good" L form from reaching the levels it did when it was administered alone.
"The major findings of this study are as follows: First, when administered as the racemate (N-acetyl-DL-leucine), the D-enantiomer was present at much higher plasma maximal concentration (Cmax) and (area under the curve; AUC) relative to the L-enantiomer, resulting in greater total exposure. Second, when administered as purified N-acetyl-L-leucine, both the Cmax and the AUC for N-acetyl-L-leucine were higher compared to administration as the racemate, even when scaled for the relative dose. Third, both enantiomers distributed to the tissues monitored, muscle and brain, but the D-enantiomer was found at much higher concentrations relative to the L-enantiomer in both tissues."
Since the L-enantiomer is the "active ingredient," and the D-enantiomer interferes with it's absorption and utilization and could have as yet unrecognized detrimental effects on cell function, the prudent thing to me seems to be to avoid the DL iteration. Just my uneducated opinion, of course.
There is always a risk that something will happen!
But the doctors didn't issue a warning in the report and the quantity was also included. Then these are also the very thorough ‘German’ doctors! who don't dare to do much and are very tight-lipped!
I think they did it on purpose because they thought it was safe. A drug that is available without a prescription and has been on the market for a long time!
If you think about the side effects of the classic Parkinson's drugs!!! And here it has been proven by a DatScan that it works!
of course it was only two people! - But in the worst case, nothing happens after a few months.
But should we now wait years until the ‘authorisation’ comes!
I'm in top shape and well trained!
I eat a healthy diet and optimise myself with all kinds of nutritional supplements.
I have regular blood tests.
My health has become my hobby.
So I'm not waiting and I'm seizing the opportunity.
It is not because things are difficult that we do not dare, it is because we do not dare that they are difficult.
Lucius Annaeus Seneca
Your statement "the doctors didn't issue a warning in the report" is inaccurate. In the discussion part of the paper they clearly state that an "obvious limitation" is that they used the racemic ADLL instead of acetyl-L-leucine. They give weight to this statement by referencing a study which concluded that during prolonged administration, the D enantiomer could accumulate and have deleterious effects on cell function. How is that not a warning?
I think the authors of this paper would be appalled at the idea they're sanctioning the use of an unapproved medication by people with RBD or Parkinson's. They didn't encourage anyone with PD to use Tanganil. They didn't even propose that more research be done with it. What they did say is that their results "provide a compelling rationale for a placebo-controlled trial in iRBD patients with bioactive acetyl-L-leucine."
While I agree there are risks worth taking, and I admire the zeal with which you are attacking your health challenges, your unbridled enthusiasm for Tanganil is a bit over the top, IMHO.
thanks for the tips.
i have written to my neurologist and asked for feedback.
She is well connected in Germany and very innovative.
my parkinson's diagnosis: december 2020, i'm still not taking any medication!
On 29 April 2024, only 20 of max. 199 points were measured according to MDS-UPDRS! About three years earlier, on 21/07/2021, 18 points were measured!
I seem to be doing something right!
And in a few months I'll know whether it was the right decision....
parkinsonclub.de/videos-fro...
Awesome job, congratulations! You're obviously making a lot of good choices.
It's precisely because you're doing so well that I urge some caution here. Your enthusiasm is infectious, and people who want to "be like you" are likely to "do like you".... but not everyone is in as good shape as you. I guess cognitive decline in one out of two subjects has created a nagging worry for me.
Ok, 'nuff said, the wet blanket will go away! I hope your trial of Tanganil is a brilliant success and everyone here benefits from your intrepidness!
Hi park_bear
This study that you cite:
journals.plos.org/plosone/a...
It is funded by … and I quote:
“This study was financially supported by IntraBio ( intrabio.com ).”
IntraBio is working to find a drug for a nasty childhood disease and they have an FDA approval underway this month for a drug based on just “the "good" L form” of acetyl-L-leucine. as say by Rufous2 ,
here it explains well:
osservatoriomalattierare.it...
nejm.org/doi/full/10.1056/N...
Now, after the children with Niemann-Pick disease who have absolute priority, couldn’t the exact same procedure be applied for Parkinson’s disease?
It seems to me that the authoritative experts in the field, always ready to inform us about the latest developments, are lagging behind.
(I am referring to doctors, journalists, and influential opinion leaders from hollywood).
greetings from Italy PB!
hey Park_bear. Seems like you're pretty well read here. With regard to ADLL..., I do not clearly understand if it is the same active ingredient as N acetyl leucine. , which seems to be easier to get online. Have you seen any specific links to online provider of ADLL. Do we know if an N-ADLL is the same. I've been taking NAC and NR for years and obviously couldn't see a clear improvement, but maybe this one's different anyway just looking for a site to buy from. Any help you can offer..
Thank you for drawing my attention to this issue!
N-acetyl - an acetyl group attached to a nitrogen atom. Reference: ebi.ac.uk/chebi/searchId.do...
For acetyl leucine the acetyl group is attached to the nitrogen atom, as shown at the left in the accompanying Wikipedia image. So it is actually N-acetyl leucine, and the terms are interchangeable as noted in the Wikipedia article: en.wikipedia.org/wiki/Acety...
No links to offer at the moment.
park_bear , FYI
Today the first drug based on acetyl-L-leucine, which is called levacetylleucine , was approved by the FDA for a rare disease, Niemann-Pick Disease Type C.
Here it is, included in the leaflet with adverse reactions and interactions.
let's hope that soon there will be one for Parkinson's disease too.
intrabio.com/news/intrabio-...
**** PS: No interactions reported with others amino acids. ****
my concern is that acetyl leucine may interfere with levadopa. I may be paranoid But I feel that I have issues with some others amino acid supplements. Wondering if someone has a similar experience
One of the two professors (Mr Strupp) has just replied to me:
Dosage 4-3-3 a 500 mg, needs at least six weeks until effect sets in ...
Here we go! There should be positive changes after approx. 2 months! parkinsonclub.de/en/top-news
Anyone with Parkinson's disease or who has a family member with Parkinson's should read this article carefully. This publication may turn out to be one of the most important events in Parkinson's disease research for decades. Do not be influenced by the cautious nature of the conclusions which suggest that these results might be anecdotal since they relate to only 2 cases. The regulations concerning off-label use of drugs restrict what the authors can report. The concerns about accumulation of the D- enantiomorph should however be taken seriously. I don't understand why the authors didn't synthesise the bioactive L- form of the molecule for this study to eliminate this problem. If these results are confirmed, they could represent a major breakthrough in treating Parkinson's disease.
Many of you are aware of my work on sulforaphane in Broccoli seed tea which primarily treats the causes of non-motor symptoms of Parkinson's which occur in the intestines and the the urinary tract. Recent observations on my own disease suggest that prolonged use of Broccoli seed tea (5 years in my case) may lead to improved impermeability of the BBB eventually blocking sulforaphane from entering the brain and slowing disease progression there. I have been looking for ways to get around this problem for several months. Acetyl-DL-Leucine easily passes the BBB and appears to resolve oxidative stress and mitochondrial dysfunction in astrocytes in the brain. To fully resolve Parkinson's disease, it will be necessary to eliminate all the sources of the disease in the intestines, the urinary tract and the brain. This article only reports on the effects of Acetyl-DL-Leucine on Parkinson's in the brain.
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