Cure RBD?

[Flipper_B]

Hi all,

I posted some information previously about my case and here is a follow up.

I finished a 12-week cure on Tanganil a month ago. I did not want to proceed further due to the fact that I didn’t see a notable decrease in my night mare events. They were in fact very low but I didn’t get rid of them completely.

But look at the graph! Since I stopped taking Tanganil, and it is now more than 4 weeks ago, I have not experienced one single nightmare or movement or any sleep problems whatsoever.

Last Thursday, I deliberately took a a few glasses of wine, had a late dinner, did not exercise and did not take my melatonin. Still nothing happened!

I sleep better, I have no restless legs anymore and no nightmares.

My plan is to decrease the melatonin dose to 2 mg and continue without Tanganil for two weeks more, then another 6 weeks cure. Later possibly start taking N-acetyl-L-leucine. What do you think?

[PDTom]

go on! tomparkinson.de/en/top-news

[PDTom]

nature.com/articles/s41467-...

[Flipper_B in reply to PDTom]

Yes, this is why I take it, I read about it. My graph is made according to the standards used in the study so they are comparable.

[gaga1958]

hi,

i have PD but i don't have restless legs nor do i have nightmares. is this beneficial not having those symptoms? thxs

[Flipper_B in reply to gaga1958]

I don’t know if it’s beneficial. I do not have PD (yet) but RBD is in many cases a prodromal phase (a phase before) to PD. But I think you can have PD without RBD and without RLS, and you do not 100% necessarily develop PD if you have RBD. So it’s a very complicated syndrome.

[Flipper_B]

As usual I add a disclaimer that I have no education in these matters and I am not telling anyone what is the right thing to do. But in fact I have been reading all sorts reports about PD and RBD and related issues at least on average an hour every day the last year…starting to get a bit obsessed actually, would be nice to be able to forget about it for a while.

[gaga1958 in reply to Flipper_B]

Don't forget that lots of people have those symptoms and it never develops into PD.

My friend and son in law have had those symptoms for years and years, as an example and don't have PD.

You know stress is a precursor to lots of other ad stuff though...........so, what will be will be. You are not in control of this, so all your fretting won't accomplish anything but perhaps more diseases.

[Flipper_B]

Well, right now I actually feel in control and I am not stressed anymore. This is my way to deal with a problem and it works for me. I had cancer twice already but am totally recovered, and of course that adds a lot of stress and could be a reason why I developed other symptoms. But PD has been common on my mother’s side in the family so probably it is genetic in my case.

[BlockRuys]

Very interesting, thanks for sharing. Keep us posted. I wonder what a mechanism of action is, that it apparently solves something but you still have symptoms. Maybe it's because your body is too busy curing parts of it?

[Flipper_B in reply to BlockRuys]

But since 4 weeks I have no symptoms at all. What is strange is that I kept on having symptoms while taking the medicine. It could also be a coincidence and perhaps it would have stopped also if I had kept on taking the Tanganil.

[Flipper_B in reply to BlockRuys]

One thing not studied as far as I know is if it could be beneficial to stop a Tanganil (or equivalent) cure for some weeks for a washout period, you never know, it might be better. But these are the things that have to be investigated. We have to hope that studies will start in Europe and Asia now, or there might be some privately financed studies in the US receiving enough contributions. Unfortunately one of my close relatives, who is a neurologist studying PD in Boston, is not sure she can continue with her studies due to the latest cuts in finances from the government.

[Steegen]

Super interesting, please keep us all updated!

[Millbrook]

what is the dose for leucine that you are looking at?

My husband has been taking it for 3 weeks about 3 g and so far not much improvement. He is still having nightmares and on a scale of 10 where he falls off the bed he is 6.5. I guess you could say he has improved because he has not fallen off the bed since he started leucine but he is still talking in his sleep and kicking.

Now if only we could stop his REMD

[Flipper_B in reply to Millbrook]

I started with 3 grams a day but increased to 5 after a few weeks. The manufacturer says the maximum dose is 4 grams a day for maximum 6 weeks. It should be dosed depending on body weight according some scientific studies. I did not experience any side effects.

As you can see in my diagram, it did almost not improve my symptoms at all during the 12 weeks I took it. It might need some time to work, as a minimum 3 weeks, according to the scientific study from September.

[Millbrook in reply to Flipper_B]

Is that leucine or Tanganil ?

[Flipper_B in reply to Millbrook]

Leucine is a protein commonly found in soy beans.

The active ingredient in Tanganil is N-acetyl-DL-leucine, which is very different.

I see now that I used the word acetylleucine in my diagram, which is correct but there are different types of acetylleucines, the D, the L and the mix of these=DL, and Tanganil is DL which was the one I used for my treatment .

[enjoy2013]

That's very interesting. Thank you. Did you not feel that something had changed?

Do you mind if I ask you if your mood improved? GI transit?

[Flipper_B in reply to enjoy2013]

Except for a much better sleep now, I don’t feel any different at all and did not experience any side effects during the 12 weeks. I don’t know what GI transit means?

[enjoy2013 in reply to Flipper_B]

Appologies, I meant digestive movements

[Flipper_B in reply to enjoy2013]

No difference at all, in fact, everything working fine

[enjoy2013 in reply to Flipper_B]

No improvement? Business as usual?

[Flipper_B in reply to enjoy2013]

Business as usual

[dan1000]

What a great result! Hopefully it can help others. From a quick peek at the graph, the improvement seems most closely correlated with your dosage of melatonin, and not particularly correlated to your time taking Tanganil. Does that sound right to you?

Regardless, well done for improving what must have been a very frustrating symptom.

Dan

[Flipper_B in reply to dan1000]

Yes and no. You are right, the decreasing trend correlates somewhat with the melatonin dose and use, and it is proven that it can take a long time for the melatonin to work, and also the effect of it can last for a very long time after you stop taking it.

The significant decrease in the graphs came in July with the increase of HIT exercise and stopping intake of alcohol and sugar.

Melatonin has been used for decreasing the symptoms of RBD for decades, but nobody has been cured, and it has never been proven to slow down the progression of alphasynucleinopathies in the brain or reverse them. Which is the case of N-acetyl-DL-leucine. Everyone interested should study the Nature scientific report from September as in the link above posted from ”PDTom” carefully. I spent days trying to understand it, checked all background data, read all the peer reviews. It was difficult since English is not my best language but it was worth it. Then again, it is an extremely small study of only 2 patients without placebo control. But the brain scans are what is important in the study, you can’t neglect those. They show definitely a reversal of the disease.

[Zico10 in reply to Flipper_B]

You mentioned sugar. I improved greatly (maybe 100%) while drastically reducing carbohidrates consumption, including of course sugar -- even, in the beginning, from any fruit and most even slightly sweet vegetable. I was afraid I had a fungal infection and cancer (PSA increasing fast), and this would help. I got rid of a sinus infection while taking Stryphnodendron barbatimam, or Stryphnodendron adstringens, which was recommended for candida gastrointestinal overgrowth infection. I then learned that fungi are responsible for a significant share of sinusitis cases. Antibiotics and corticoids make it worse. I also learned that aspergillus, often behind sinusitis, is among the known causes of RBD.As in the process I started eating much more fiber, as my choices were limited and I was very hungry, though maybe not only for this reason, also constipation has ceased being a problem. I did have to drink more water, despite vegetables containing quite a bit on their own.

Incidentally, also my PSA fell to a lower leven than it was when it started going up faster. (I also took burdock and dandelion teas, lycopen, astaxanthine, neem and turmeric for 2 months.)

You gave me the opportunity to more easily introduce a subject that may be helpful to many who have PD or who may be able to prevent it, such as by taking care of a possible fungal infection or through some other route affected by diet, that has the same effect. [I would just warn that after a couple of months I felt very week and had cramps while at rest and significant muscle pain in my legs while walking. This could also be related to a back issue, maybe diet and lower back issue. I read that candida can lower b1 and b6. After 2 months of the strict diet, my B1 was very low, also. Maybe it was low to begin with. Supplements with B6 used to be a problem. After these 2 months of strict diet (I had never measured it before), my serum B6 was above the upper reference limit, but I did OK nevertheless. Benfotiamine and a bit more fruits, meat and carbohidrates not rich in sugar are helping me recover.]

Thanks for your account!

[RBDNoPDYet in reply to Zico10]

Where did you read that aspergillus causes rbd? I haven’t seen that anywhere.

[Zico10 in reply to RBDNoPDYet]

I was looking into candida. Maybe I searched candida and rbd, or maybe fungi and rbd. At some point a friend mentioned aspergillus as dangerous, and I came across a reference to aspergillus and mucor causing it. I tried to find something now, and couldn't. It is not impossible that the two cause rhino-brain disease and I mistook it for rem-sleep behavioral disorder, maybe on an AI search. I find that a bit unlikely, as the text would normally spell out what rbd meant, if I did write it like that, and yet didn't specify it or else was explicit about Rem-sleep BD.I would add that as I increased carbohidrates (including bread with some refined wheat) and even yogurt for a few days, to see if I woukd improve from muscle pain while walking, which I did, last night I woke up twice after being in close contact, in my dreams, with animals. One was a very small dog that I seemd to ignore, but am not sure if somehow I moved -- it almost seemed so; the other was a lizard I saw as I opened a door to leave the house. I merely seemed to have closed back the door, but suspect I may have moved. Also, my tongue was a lot whiter than in the last couple of months, and there was even a small white patch in it, in an area not in contact with teeth, close to the back of the tongue, upper side. I had not had anything like this happen while on the strict diet. I was sleeping a lot better, and was also free of a life-long strong anxiety (took antidepressants till jan 2022, but they started triggering rbd episodes), even resisting extremely well terrible news. Should add that as I increased foods not good for GI candida etc overgrowth, I was starting to clench the jaw again. This is a common symptom of a fungal infection which I always associated directly to anxiety.

I see now that treating aspergillus infections have been said to possibly cure autism. I believe I have Asperger's.

pmc.ncbi.nlm.nih.gov/articl...

Thanks for the excellent question. Will look into this further, as I was certain of what I read. I sometimes do not dig further because of hightened anxiety. But maybe now I can study more.

[Zico10 in reply to RBDNoPDYet]

Btw, my RBD became a more serious problem after a few days taking brewer's yeast. Similarly, but without the RBD effect, I had a likely fungal infection gone wild (severe nausea and dizziness for over 36 hours, white mouth the next morning, itching) immediately after I took magnesium citrate in the early morning (I later found out that the citrate came not from fruit, but from molasse fermentation). The day before, still unaware of what I was getting into, I ate food totally not recommended in case of a fungal infection: peanuts, tomato sauce, mushroom. (Turns out I do not do well wrt BRD after taking supplements with B6, melatonin with B6 or even a couple of days with foods high in B6. Several days drinking green tea, all else apparently constant, also wasn't good. Somehow my B6 was too high even after likely very significant fungal infection. I wonder if it has always been this high or even higher. My RBD started in at the end of 2021, as I was waning an antidepressant. It continued and was made worse by the antidepressant I took next. B6 seems to affect serotonin levels, as you all may know.

I should add that I do not have a PD diagnosis. May be on its way.

[Flipper_B in reply to Zico10]

Yes, I agree that a diet of low carbohydrates and sugar (and alcohol) seems to work very good. It is important to make up for the energy loss and eat much more vegetable fat, like olive oil, nuts and avocados and fat fish. Otherwise you risk to loose too much weight. I lost almost 8 kg in 6 months and I shouldn’t loose more now so I need to increase my fat intake.

[Zico10 in reply to Flipper_B]

Yes, thanks for the feedback. I was eating quite a bit of fat. Coconut (including MCT), which I suspect was what increased my cholesterol levels, esp. LDL, nuts, seeds, and olive oil. Still had major muscle problems. Added B1, which seemed to help, but had relapse, let's say, and opted to not wait and see. Added more carbohidrate and fruits, but may have gone overboard. Suspect mainly of whole grain breads that did contain enriched wheat flower, which I should have read as white, despite the color of the bread and all the flash manufacturer emphasis on whole wheat and other grains. Either way, I will be a lot more cautious now, and reduce carbohidrates again, even if not as much.

[Flipper_B in reply to Zico10]

I asked my Chat GtP about how much fat I need to replace the carbohydrates in an average diet and it should be around 100 grams extra per day, which is quite a lot.

[Parkinsunny]

great news

[Leest2023]

I have RBD and Parkinson's. I began to notice RBD ( and shorter, less refreshing sleep) about a year ago. I only wake up kicking, punching or screaming a few times a week, but when I had a sleep study about 6 months ago, they recorded over 60 episodes of REM sleep without atonia. So on nights when I have no subjective RBD episodes, there's still an underlying issue. My point is that although it is great if taking tanganil has reduced your subjective experience of bad dreams and RBD episodes, it seems a little quick to talk about being cured. It would be great to see that proven by a sleep study. I too am going to try acetylleucine and am hopeful it will be of some help, but I think there's a lot more to learn before we use the word cure. I'm just a skeptic when all the evidence for something is anecdotal or observational....but that doesn't mean I won't try it.

[Flipper_B in reply to Leest2023]

I couldn’t agree more. The head line has a question mark in the end. I am going to have a sleep study done in April or May, haven’t got the exact schedule yet. They will also perform a scanning of my brain to see if there are signs of progression towards PD.

But my sleep has become much better and continues to improve, last night I slept the whole night without (as far as I remember) wake up.

[Gioc in reply to Flipper_B]

hi   Flipper_B ,

FYI carbohydrates, sugars, alcohol, consume Thiamine (vitamin B1) favoring nightmares.

IMHO with 50/100 mg of Thiamina hcl at dinner and a little magnesium could help burn all the excess sugar and alcohol before going to sleep, promoting good sleep. Acetyl leucine has a similar property of accelerating ATP and also does other things as you well know.

Greetings from Italy

Neve in lombardia

[Flipper_B in reply to Gioc]

Mille graci, I didn’t know that! I will try.!

[Jomaxx]

I used to take melatonin for my RBD. I had to keep increasing the dosage, and then it almost seemed that the melatonin was causing the RBD to act up! So I quit. I now take Klonapin; but only when I’m around others at night (I live alone) because it’s so addictive. My psychiatrist doles it out. Are leucine and Tanganil easy to get? I yell out probably every few months and actually fall out of bed once a year or so. I believe I have early Parkinson’s, due to this issue as well as having chronic constipation and my right arm doesn’t swing. I’m 67. Thanks for any advice.

[Flipper_B in reply to Jomaxx]

I am in contact with a neurologist frequently and she told me not to take more than 3 or maximum 4 mg melatonin because the body can sometimes decrease its own production in case you take too much, and it will just get worse. Tanganil is possible to buy without recipes over the counter at French pharmacies. As far as I know it is the only country. Tanganil contains the active ingredient acetyl-DL-leucine.

[Jomaxx in reply to Flipper_B]

Thanks! I’m in Chicago.

[Zico10 in reply to Jomaxx]

I had the impression both malatonin and klonopin were not helping much after a while, and quit. Then when I used them again for whatever reason, they both seemed more likely to bring back episodes than to prevent them.

[Jomaxx in reply to Zico10]

Thanks for that info.

[Ghmac]

Do you take this in powder form or tablet? Where did you purchase it? Do you live in the USA?

[Flipper_B in reply to Ghmac]

I travel frequently between Sweden and Spain so I just go to a pharmacy close to the railway stations when passing France by train, it’s the only country where you can buy it over the counter as far as I know. These are tablets.

[MarionP]

Sounds like a viable enough plan. Would like to be kept up to date on how it goes.

[Flipper_B in reply to MarionP]

Thank you! You can just follow me and then you will get alerts on my new posts

[clarksdocs]

In our case, melatonin does not work unless you take 60-70 mg nite, must get sound sleep at nite, drugs for restless legs, is serious . medical drugs did not help, stopped taking pain pills, restless legs stopped, every case every med can act differently, good luck