Tanganil.. Why all the hype?: I Keep... - Cure Parkinson's

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Tanganil.. Why all the hype?

Surfdoc1 profile image
25 Replies

I Keep reading posts about people's experience on Tanganil for PD but cant find any real hope in the articles ive seen. Anyone want to educate me?

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Surfdoc1 profile image
Surfdoc1
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25 Replies
Bolt_Upright profile image
Bolt_Upright

If you join us on the Sunday Zoom call some people on that call are knowledgeable.

us02web.zoom.us/j/833522248...

Sundays, 11 am – 12 PM-ish, US CDT.

StevenOS63 profile image
StevenOS63

Hello surfdoc,

please post links to the reports of other PD patients who report on their experiences with Tanganil / Acetyl-Leucine. I can't find that many testimonials - I would be very interested. Thank you very much.

ForcedToJoinToRead profile image
ForcedToJoinToRead in reply toStevenOS63

I've given it to my husband for two periods of time. from October 29, 2024 until February 11, 2025. Started again on February 21, 2025. The first time we saw a big difference in everthing at about 3 weeks, how he walks, talks, writes etc. It seemed to diminish over time, plus I read on this forum you shouldn't take it over 3 months in a row, which is why we stopped on Feb 11 to cleans it out of his system. His symptoms got worse. We started again on February 21. In about a week, many of his symptoms improved again. Especially his balance. He hasn't fallen for 10 days. Without it he falls 5-7 times a week, sometimes more. It has not helped as much as I had hoped with his dreams. He is still very active at night, usually from 1am-5am. I found out about Acytel DL Leucine from this forum, and got it from MarkNature. It has made a big difference for us. We were looking at moving from independent living to assisted in mid Nov. After he started seeing positive affects in late Nov. We traveled 600 miles each way to see family in early Dec, and now are moving up there into a townhome to be by them. We anticipate hiring help as needed maybe once a week or so, and also to subscribe to a meal plan. I work from home full time and am also his full-time caregiver. For us this medicine has been a game changer in improving the effects of Parkinson's Disease. My husband is aged 77 and was diagnosed in 2018. I am aged 60.

StevenOS63 profile image
StevenOS63 in reply toForcedToJoinToRead

Great!

Flipper_B profile image
Flipper_B

You can search my various posts about N-acetyl-DL-leucine (Tanganil). I don’t know if it’s a ”hype” and can’t speak for anyone else than myself but I have been completely cured for 8 weeks now from my RBD(REM sleep behaviour disorder), which in many cases is a kind of a pre-stage of PD . I have not seen anything about PD and Tanganil either, so far.

YankeeChris profile image
YankeeChris in reply toFlipper_B

How/where do you get the tananil?

Flipper_B profile image
Flipper_B in reply toYankeeChris

I bought it over the counter in France, in December. Seems to be difficult to get now.

YankeeChris profile image
YankeeChris in reply toFlipper_B

I bought it on-line from France last year (shipped to US) but am unable to get it that way now. It seemed to help my RBD/REM sleep behavior disorder at a low dosage of 500 mg per day.

Flipper_B profile image
Flipper_B in reply toYankeeChris

Yes, there is an FDA approved and patented medicine in the US now (AQNEURSA, needs prescription) which probably means it is illegal to export this to the US.

I took 5000 mg per day for 12 weeks. The recommended max dose from the manufacturer is 4000 mg per day for maximum 6 weeks. Sounds great that you did not need such a high dose to get results! But I guess no one knows the appropriate dose for this disorder.

Surfdoc1 profile image
Surfdoc1 in reply toFlipper_B

Ty

StevenOS63 profile image
StevenOS63 in reply toFlipper_B

Hello, I can only confirm this. After just three days of taking Tanganil I was no longer tossing and turning at night... My wife is very happy about that! I only twitch in my sleep at most, my wife says - I don't even notice it any more. I've been taking Tanganil for 6 weeks now. Another positive thing is that I no longer make so many typing mistakes. I plan to take Tanganil for 2-3 years. The study shows that one test person only showed a reduction in tremor after a year. So it takes time. I'm rather surprised that there isn't more hype about Tanganil / acetyl-DL-leucine.

Translated with DeepL.com (free version)

Flipper_B profile image
Flipper_B

I actually was able to order more Tanganil yesterday evening, from an online pharmacy in France. So it seems to be available again.

If you plan to take Tanganil for a long time, plse note from the scientific report that you could get cognitive problems. So I would suggest to have washout periods.

StevenOS63 profile image
StevenOS63 in reply toFlipper_B

Thanks for the tip, of course I'm aware of it. That's why I wanted to have a Moca test with my neurologist at regular intervals. But my neurologist is not particularly interested.

With certain French pharmacies, you should only order via paypal and buyer protection - at the pharmacy where Tanganil is currently available, I have already waited 1 month for a refund because it was not available after all. In the meantime, I have bought a 1-year supply.

I also always find it interesting what suggestions are made in the forum - although they seem to be more of an opinion than scientifically based. Why do you suggest a “washout phase”? What is this “opinion” based on?

Flipper_B profile image
Flipper_B in reply toStevenOS63

Yes, In the scientific report from Germany from September last year, there actually is a note that both these patients got slightly worse cognitively. Then I read another report with N-acetyl-DL-leucine tested on mice, where they found a buildup of the D enantiomer in some cells, it seems that the ”D” is not metabolised very well in the cells. There is no further evidence what consequences this could have, but ”better be safe than sorry”. Pierre Fabre, the manufacturer of Tanganil, recommends no longer periods than 6 weeks. The N-acetyl-L-leucine, without D-enantiomer, is probably more safe.

ForcedToJoinToRead profile image
ForcedToJoinToRead in reply toStevenOS63

We found diminishing affects, and found that stopping for 10 days to cleanse it out of the system was useful. Worked better upon taking again. We are planning 2 months on and 10 days off.

Chastar profile image
Chastar in reply toFlipper_B

Would you be able to share which pharmacy you are ordering from? I’ve been trying to get some ordered to UK but the online pharmacy that has it in stock says it’s only for French residents 😩. I imagine there’s quite a few of us who’d like to know how to get it. Thanks, Char

StevenOS63 profile image
StevenOS63 in reply toChastar

mon-pharmacien-conseil.com/...

Hi, Tanganil was available here for about 2 days - apparently the pharmacy sold in advance, because according to an email I received, Tanganil won't be in stock there until the beginning of next week. I ordered 20 packs - let's see if they arrive :-)

There are about 10 French online pharmacies that also offer generic Tanganil - all of them are sold out. However, you can register there by e-mail and will then be informed when it is available again. However, the quantities vary - from 8 to 10 to 40 packs.

I also bought acetyl-L-leucine from Amazon, but unfortunately I can't find a laboratory in Germany that tests this Chinese powder - because I'm a bit skeptical as to whether the purity information here is correct. Perhaps someone here has more knowledge?

I am also skeptical about other suppliers of acetyl-L-leucine. It all comes from China and is not tested again by third parties or an independent laboratory.

Despe profile image
Despe in reply toFlipper_B

Would you please share the name of the pharmacy? Where are you, Europe? I have a niece living in Brussels and she could order it for us. Thank you!!

Flipper_B profile image
Flipper_B in reply toDespe

I added the link below

Despe profile image
Despe in reply toFlipper_B

Yes, I just saw it. Thank you!

Flipper_B profile image
Flipper_B

Yes, I ordered here: pharma-gdd.com/fr/tanganil-...

Within the EU you can buy, but outside EU there might be other rules depending of which country

I agree there could be a risk in buying from China. I found the Swedish government has a lab checking this but they want 300 grams to test

StevenOS63 profile image
StevenOS63 in reply toFlipper_B

Please send me the contact for the "Swedish government lab". I will test it!

Flipper_B profile image
Flipper_B in reply toStevenOS63

Will have to search a bit, will get back to you soon

Chastar profile image
Chastar

Thank you Flipper B and Steven for kindly sharing where you purchased Tanganil/ Generic form. I really appreciate it!

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