I cannot begin to tell you how grateful I am for your posts Boscoejean . I find videos posted that are two hours long and in German absolutely daunting. Thank you for synthesizing.
Thank you. This is good information, although not definitive.
Conclusion
The exact mechanism by which acetyl-leucine is mediating its therapeutic effect is still unknown. The mechanisms reviewed here may potentially contribute to the reported neurological improvement either individually or the mechanisms could be synergistic.
The the DAT-SPECT scan is an examination with a slightly radioactive contrast medium that is not dangerous, but patients are somewhat hesitant to undergo it. It is a very expensive test (around €1200), and to compare two dat-scans, they must be performed with the same camera, meaning the same equipment, which the scientists of the study have done very thoroughly.
In Italy, it is routinely used to confirm the diagnosis of Parkinson's disease with the symptoms.
quote from the study:
“ The DAT-SPECT procedure including the acquisition and reconstructions of the DAT-SPECT scans has been published 7-39 (see also Section D in Supplementary Information). Apart from the last DAT-SPECT of patient 1 performed in 09/2023, all DAT-SPECT investigations were performed in the Department of Nuclear Medicine, University of Marburg. Thus, the DAT-SPECT scans of patient 1 in 2013, 2014, 2016, 2019, and 2022 and the DAT SPECT scans of patient 2 in 2020 and 2023 were carried out on the same SPECT camera. “
Hi Gioc, I had heard of datscan in the past so I was wondering about the substance used. The neurologist my husband saw in 2017 had him have a brain scan which involved using gadolinium. Two or three hours later he came down with a serious case of shingles so we never knew if it was the gadolinium or just exposure at the hospital where he had the procedure that may have created the conditions where shingles would happen. It does however make us hesitant about the injections used to accomplish these scans.
I'm sorry for this adverse reaction your husband had.
the DAT-SPECT scan is a specific test for Parkinson's disease that measures the density of dopamine receptors in the brain. It is used to confirm the diagnosis of Parkinson's based on symptoms.
In my opinion, the relevant point here is that it is an objective test that rules out the possibility that the improvement is due to a placebo effect , but we are talking of REM sleep behavior disorder, not Parkinson's disease yet.
"In my opinion, the relevant point here is that it is an objective test that rules out the possibility that the improvement is due to a placebo effect , but we are talking of REM sleep behavior disorder, not Parkinson's disease yet."
Precisely, Gioc, but PDTom has PD, not RBD! That is why I asked him if he intends to have any such tests done after he has taken Tanganil for a while. As hyped up as he is about this compound, and by embarking on this trial in the spotlight of the internet, he's virtually certain to experience a placebo effect.
There are some people I know who are now taking Tanganil. We'll find out more in a few weeks' time. And in a few months we will know if it is permanent. If the number of people taking Tanganil increases and report the same thing, it will become a self-runner.
I haven't taken any medication since my diagnosis in December 2020 and am almost symptom-free! I am fully trained and here is my data scan from January 2021. I assume that this has hardly changed to this day, as I have demonstrably stopped Parkinson's with my alternative healing methods.
‘On 29 April 2024, only 20 out of a maximum of 199 points were measured according to MDS-UPDRS! About three years earlier, on 21 July 2021, 18 points were measured!’
You can create a group of people who are taking Tanganil like the groups of B1 Therapy , and write how it is working, the effects, the dosage.. and so on.
REM sleep Behavior Disorder (RBD) in a large percentage turns into PD over time, and this is studied by datscan.
RBD is often early stage Parkinson's. If you read the study and watched the video, you should know because the researchers explains it well.
Do you have a datscan? I assume not, because your comments make it sound like you don't understand much about how a Dat scan works in Parkinson's and therefore how can you interpret the study if you don't know the context.
I do understand what a DatScan is, and understand that the brilliance of this study is that D-scan and FDG-PET were performed, removing most concern about placebo effect. It is a very encouraging observation in two people with RBD, but we're a long way from knowing that Tanganil will be safe, much less effective in PD. One of the two study participants suffered (measurable) cognitive decline during the study, and the researchers themselves said they will not be using Tanganil in future studies.
With his expectations in the clouds, it seems inevitable that PDTom will have a robust placebo response. He's already intimating that Tanganil is "working." Hundreds, if not thousands of people are likely to follow suit..... all based on one person's subjective experience. I simply asked if he intended to obtain any hard evidence before launching that ship.
My spouse has RBD, one of their siblings has late stage PD, and another sibling has an as-yet-unidentified neurological disorder. If anyone wants this "treatment" to pan out it's me, but I don't want false hope. If tempering expectations is "trolling" ....gimme a bridge.
Uh! I see that you have a lot of certainty (more than me or anyone else for sure ) about the facts in question, but also a lot of certainty about the future actions or events of other people.
I'm sure that after careful reflection e in-depth analysis, you might find a little self-criticism in what you've written in this thread.
It appears to be you who is speaking in absolutes, not me. But I'll tell you what.....since I have no agenda or "cure du jour" to promote, I will henceforth confine my activity on CP to lurking. 👋
have you seen Tom's video in this thread from minute 60 and minute 1h:14?
I'm just asking you this: could you watch the video on YouTube before talking about propaganda and undermining this research of W.Oertel and Tom trying it .
Some Quote from you about this study:
”With his expectations in the clouds, it seems inevitable that PDTom will have a robust placebo response.”
Another one :
“As hyped up as he is about this compound, and by embarking on this trial in the spotlight of the internet, he's virtually certain to experience a placebo effect.”
What wonderful certainties, but why have researchers never thought of this? This would be the solution to the annoying placebo effect.
You are totally misconstruing everything I've said. I read the study carefully several times, including the supplemental material. I also watched the video. And if you read my previous posts you will see I referred to the brilliance of this study. I very much respect the authors and their conclusions.
What I have a problem with, is those who would make the gargantuan leap to concluding that this drug is safe for, and should be taken by, people with Parkinson's.....and then crow it from the rooftop. If you personally believe that is the case and want to try it for yourself.....fine. Just do it. Then report on it later, if and when you actually know something.
This "Tanganil campaign" of PDTom's borders on promotional. What.....everyone's supposed to wait with bated breath for him to pass judgement on it? He already claims to be beating PD, so how on earth will he "know it's working" if he doesn't have any imaging done? Bah!
I'm a skeptic by nature and thought there was a place here for healthy skepticism, but I can see I was wrong. So thank you, Gioc, for pointing out the error of my ways. I was spending way too much time here.
A multi-millionaire, how nice for you, congratulations! Perhaps you will consider funding Dr. Oertel's follow-up study with N-acetyl-L-leucine. He was practically begging for donations on the video you posted. Or maybe you would consider fund-raising for him. I'd donate if a secure site was made available, and I suspect others would too.
I don't misconstruing because , I have PD, but I'm not stupid, I don't have a cognitive deficit.😁
I can’t do the Montreal Cognitive Assessment (MoCA) designed for the rapid screening of mild cognitive impairment because I wouldn't be able to draw a cube as required for the tremor in my hands.
But you don't know this because even though you've read the research several times you don't know the real context, you don't have PD, you don't understand what the MoCA test is , and that it doesn't measure "decline" , how you said. MoCa misure the condition that above 26 points is considered normal, below is considered cognitive deficit, that is, it has a cut-off point = 26.
The same goes for the datscan, the datscan is done in the presence of symptoms and serves only to confirm a diagnosis because it is an imprecise test. So it's not that the datscan shows an improvement, but in this case, in the presence of improvements in the symptoms, the datscan image objectively confirms them. So simply comparing two datscans doesn't prove anything . In a PD case like Tom's or mine, you would always see two almost equal points because 70% of the cells are dead.
That's why they preferred to study two cases of RBD with what a good probability they are prodromal cases of Parkinson's,but they still have a lot of neurons.
But did you read the study? 🤷🏻♂️
Is acetyl-dl-leucine not safe? Strange because it is a drug approved over the counter for over 40 years for hypotension and dizziness ( two symptoms of PD) and researchers here do not report adverse events, so on what basis do you say otherwise?
No you definitely did not understand this study, you probably do not understand the context and do not know the fundamentals also .
I assure you that there is no campaign in favor of a drug that they only sell in France, I do not think they need it.
This is propaganda and it is very nice to read for a Person with Parkinson’s:
I'm not aware of any others. In the video posted above, Dr. Oertel says he is trying to raise the funds to conduct a follow-up study. The video is in German and the subtitles are sketchy, but I believe he says the study would involve 30 people;15 with RBD and 15 with early Parkinson's. I think he also says that if fundraising goes well, it could start in March.
I also ordered Tangalin. I am also scheduled to have a DAT scan taken in like 4 months. So it will be nice to see if it has any effect on the dopamine levels.
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