Anyone else dealing with Rapid Eye Movement Behavior Disorder? I am trying to learn more about preventative measures.
Anyone else dealing with Rapid Eye Moveme... - Cure Parkinson's
Anyone else dealing with Rapid Eye Movement Behavior Disorder? I am trying to learn more about preventative measures.
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JackBruce2024
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REM Sleep Behavior Disorder? Yes, that is why I am here! I also have a couple of PD symptoms. I am trying to reduce and stop my RBD so maybe I can stop progression to PD or LBD.
First: Reach out to me any time.
Second: Maybe check out my blog. I post all the things I am trying (My Stack): rbd-pd-protocols.blogspot.com/
Third: You should join our Zoom calls MBAnderson is so nice to host:
us02web.zoom.us/j/833522248...
Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)
Sundays, 11 am – 12 PM-ish, US CDT.
Good luck and welcome to the group.
Thanks. I just joined the REM disorder Facebook group and saw your link there. I just started a low-sulfur diet about a month ago and am researching about how to reduce Desulfovibrio bacteria. Right now I'm taking the daily liquid Symprove probiotic; the Life Extension Bifido GI Balance Probiotics Bifidobacterium Longum BB536; Magtein Magnesium L-Threonate; and the Tesseract Medical Research ProButyrate Butyric Acid Complex. Wondering if you have any suggestions about additional supplements thaht might help. Thanks again. - Rob
You can see everything I do on my blog. It has links to the things I purchase. I can't be sure if anything is working, although my RBD is better than it was 2 years ago.
I have read good things about Butyrate. Just have not figured out how to work it in as I don't want my stack to get too big. Here is my stack: rbd-pd-protocols.blogspot.c...
Wow, great list! Have you seen this yet (since you are reducing Niacin, this might be relevant ... I know you do not have PD, but still there might be a connection to RBD):
medicalnewstoday.com/articl...
I'm not reducing Niacin. I take a gram of Nicotinic Acid twice a day. Yes I have seen the studies on NR and other studies on NA.
I have a high school degree and some electronics technical schooling, but from what I can tell NR is converted to NA by the body and I could not ever find anything to explain why NR would be better than NA. My best guess is the studies were done using NR because there is or was still a patent on NR so NR satisfies a profit motive. NA is much cheaper. Also, for some reason, a lot of people really don't like the NA flush. I don't mind it and I save a bunch of money.
But like I said, I have no medical training.
Bolt, I recently listened to a Peter Attia interview of Chris Masterjohn and thought of you when they discussed NAD, NMN, nicotinamide riboside, etc. I think you might find it interesting. Relevant part starts at 1:09
google.com/search?q=peter+a...
Chris warns that large doses of niacin use up methyl groups like crazy and should be compensated for....something you might want to look into.
Thanks. I have seen that. I "think" I am covering this with:
5: L-Methylfolate 15 mg at 9 AM. amazon.com/dp/B0938NKV1G?re...
My Stack: rbd-pd-protocols.blogspot.c...
Wow, that's a lot of methyl folate!
I'd keep an eye on your B12 levels. A deficiency could predispose you to "folate trap," in which case all those methyl groups would go to waste.
Each capsule contains 1000 MCG of B12 also. Hopefully that makes it good?
Yes, that should be good, as long as you're absorbing it well. At some point you might want to see what your blood levels are, just to be on the safe side. But I'd expect them to be fine. 😊
I would bypass the pseudo scientific nonsense (especially in the interest of anybody you sleep with, who you could hurt badly at any moment) and go right to what the doctors do, because it is not that difficult to treat. Amateur hour is fun but not particularly responsible. Oh and if you use alcohol by any chance, end it, it will exacerbate or even bring out the RBD.
You can protect your partner by sleeping apart. My wife and I have Twin XL beds a few feet apart now.
Doctors will prescribe Clonazepam, which may (or may not) increase your chances of dementia, does not treat the underlying problem, and has side effects:
Clonazepam may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
drowsiness.
dizziness.
unsteadiness.
problems with coordination.
difficulty thinking or remembering.
increased saliva.
muscle or joint pain.
frequent urination.
JB,
Melatonin is considered as a first line treatment for RBD as discussed here :
onlinelibrary.wiley.com/doi...
Here is a relevant quote from the human study :
' Melatonin is recommended as a first-line treatment in isolated REM sleep behavior disorder (iRBD), although no large patient group has been reported. To assess effects, time course and confounding factors in the treatment of patients with iRBD using melatonin, 209 consecutive patients were included in this single-center, observational cohort study. A total of 171 patients had taken melatonin according to our chronobiotic protocol (2 mg, ≥6 months, always-at-the-same-clock time, 10-11pm, corrected for chronotype), 13 had applied melatonin for about 1-3 months, and 25 underwent mixed treatments. In total, 1529 clinical evaluations were performed, including Clinical Global Impression (CGI) and a newly developed RBD symptom severity scale (Ikelos-RS), analyzed using linear mixed models. Validation of Ikelos-RS showed excellent inter-rater reliability (ρ = 0.9, P < .001), test-retest reliability (ρ = 0.9, P < .001) and convergent validity (ρ = 0.9, P < .001). With melatonin, RBD symptom severity gradually improved over the first 4 weeks of treatment (Ikelos-RS: 6.1 vs. 2.5; CGI Severity: 5.7 vs. 3.2) and remained stably improved (mean follow-up 4.2 ± 3.1years; range: 0.6-21.7years). Initial response was slowed to up to 3 months with melatonin-suppressing (betablockers) or REM sleep spoiling co-medication (antidepressants) and failed with inadequately timed melatonin intake. When melatonin was discontinued after 6 months, symptoms remained stably improved (mean follow-up after discontinuation of 4.9 ± 2.5years; range: 0.6-9.2). When administered only 1-3 months, RBD symptoms gradually returned. Without any melatonin, RBD symptoms persisted and did not wear off over time. Clock-timed, low-dose, long-term melatonin treatment in patients with iRBD appears to be associated with the improvement of symptoms. The outlasting improvement over years questions a pure symptomatic effect. Clock-time dependency challenges existing prescription guidelines for melatonin. '
Art
Thanks. In fact I do take a low dose of Melatonin. But from everything I've read, it reduces the symptoms but does not delay the progression of the illness. Right now I'm more concerned with treatments that would delay the progression into dementia.
This may interest you :
healthunlocked.com/cure-par...
Art
Thanks for reposting this Art! I need to study this subject again. I remember is looks promising.
Thanks, Art!
I am not weighing in on the efficacy of Melatonin, but I too share your strategy of not trying to mask any symptoms. I want to make the symptoms go away because whatever is causing the symptoms is improving.
Just curious: Do you have Hashimoto's? (I do).
No, I do not.
Wondering if you have seen this study below. One of the reasons this probiotic works so well is that, according to another study, it reduces the amount of Desulfovibrio in the gut. Although I do not have PD, as you know excess (and abnormal strains of) Desulfovibrio is also associated with RBD. I've been using this since 6 November.
If you're talking about Parkinson's disease, the sad news for you is that there is nothing that stops progression of the underlying disease.
There is nothing that we know of to stop progression. There have been a few alleged success stories of stopping progression. Some researchers have said that if ever there was a chance to stop progression, that chance is when you have RBD and have not developed PD or LBD yet.
I sure hope all of use have a chance. I am not ready to stop trying.
I appreciate your input - thanks again
"If you're talking about Parkinson's disease, the sad news for you is that there is nothing that stops progression of the underlying disease."
Actually, that can't be said with absolute certainty. It does seem that once the disease has reached the substantia nigra, continued neurodegeneration is inevitable. But it's also known that Parkinson's begins long before that point. So there could well be people out there whose disease was arrested before they developed motor disease and could be diagnosed. Maybe not likely, but not beyond the realm of possibility.
Most people with ideopathic RBD go on to develop an alpha-synucleinopathy, but a few do not. And as disheartening as it is to receive an RBD diagnosis and realize what it portends, perhaps it's better than being blindsided by a Parkinson's or DLB diagnosis. At least one has an opportunity to try to affect the course of the disease.
I agree Rufous. I've had RBD since at least 2015 but have no PD symptoms as of yet. Thanks for your input.
Art, I just got around to reading this study. It seems very important, cause it suggests the possibility that melatonin isn't just symptom-suppressive. I hope everybody with RBD will read it and perhaps try a low-dose, bearing in mind that success requires fastidiousness of timing and 6+ months of use, especially if beta blockers or antidepressants are on board.
Interesting article.
R2,
If you think melatonin is only symptom suppressing, you just need to read a bit more about melatonin. In that study, there was this quote :
' When melatonin was discontinued after 6 months, symptoms remained stably improved (mean follow-up after discontinuation of 4.9 ± 2.5years; range: 0.6-9.2). When administered only 1-3 months, RBD symptoms gradually returned. '
I don't think the above quote could happen unless there was some repair work going on from melatonin supplementation at very low dose(2 mg) over an extended period of time of 6 months, otherwise how could the effects last for 2.4 to greater than 7 years after stopping melatonin intake?
Here is a link to a modestly related review giving another angle of melatonin as relates to PD and AD :
pubmed.ncbi.nlm.nih.gov/378...
Here is a relevant quote from the review :
' Recent results propose that alterations in circadian rhythm regulators, mainly Bmal1, may regulate the abundance of gut microbiota. This correlation has been linked to the regulation of the expression of immune-related genes and Bmal-1 mediated oscillation of IgA and hydrogen peroxide production. These data seem to provide new insight into the molecular mechanism of melatonin inhibiting the progression of AD and PD. '
This is part of why I have written so many articles about melatonin on this forum. The evidence for the usefulness of melatonin in human, animal and plant health just keeps piling up. I don't think it is an accident that melatonin is produced in the mitochondria among other areas of the body, while animals and plants seem to thrive on it!
When you look at the withdrawal difficulties seen with long term use of Benzodiazepines and compare that to the "no withdrawal symptoms " of melatonin, it is no wonder melatonin can be considered as a first line treatment for RBD. I have taken high dose melatonin for many years and have been taking 132 mg/day for well over a year and do not have any problems if I have to miss a dose or doses in a row.
Art
I think you misunderstood me, maybe reread my comment. I was making the exact point you just did.
"I don't think the above quote could happen unless there was some repair work going on from melatonin supplementation at very low dose(2 mg) over an extended period of time of 6 months, otherwise how could the effects last for 2.4 to greater than 7 years after stopping melatonin intake?" = Very significant.
Art, Two questions: (1) According to these studies, do you know if there is a minimum daily dose of melatonin that's required to obtain these beneficial, long-lasting results? And (2) Is there a way to determine what a particular person's dosage needs might be? I have been taking one mg a day since late October and I have no side effects at all. But many years ago, before I had RBD, I tried taking it at a 3 to 5mg per day dose, and after just a few days had to discontinue because it affected my mood and made me feel drowsy the next day. I'm going to try increasing it again to see if I can tolerate a larger dosage. Thanks for your input.
JB,
In this particular study, they only used 2 mg every night at the same time (10-11 pm) for 6 months in order to receive the reported benefit and the benefit continued for years after stopping. There were 171 participants taking the melatonin at 2 mg in this study.
I would consider trying to go to the study dosage of 2 mg at 10 to 11 pm every night for 6 months to see if you can replicate the study results. The study was attempting to show that trying to realign a perturbed circadian rhythm using melatonin could have beneficial effect in RBD. Many newer studies suggest that a misaligned circadian rhythm can be detrimental to our health because the organs need to have proper circadian rhythm in order to operate more optimally. If melatonin helps maintain proper circadian rhythm of the organs, declining melatonin levels will very likely be counterproductive.
With age, melatonin levels decline in humans and people with PD decline even more than healthy age matched controls. With age, many people also spend less and less time in the sun and this can also contribute to declining melatonin levels when we are no longer getting melatonin from infrared rays from the sun. The decline of melatonin in humans has an inverse relationship to the increase of age related diseases of which PD is one. Although RBD may not be considered an age related disease, it clearly becomes more common in later adulthood beyond the age of 45. Look at the attached graph depicting the age related decline of melatonin in people . You can see that by age 35 to 40, melatonin levels have declined very significantly and this corresponds with the onset of age related diseases. By age 50, that level has declined to the level of an infant and age 50 is also when RBD starts to become more prominent.
In people with PD, higher dose melatonin(50 mg/day) has shown the ability to return the elevated oxidative stress levels of PwP back to healthy control levels within months. It is sometimes said that PD has perturbed mitochondrial function as a main component of the disease process. That same 50 mg of melatonin has also shown the ability to help restore mitochondrial function. There are no studies that I am aware of that show that returning elevated oxidative stress levels and improved mitochondrial function in PwP to healthy control levels will slow the disease process, but in my opinion, how can it not? In animal studies of PD models, it does. It is already known that melatonin is a potent antioxidant and radical scavenger, but it also upregulates multiple components of the bodies own potent antioxidant system which further reduces elevated levels of oxidative stress and inflammation throughout the body, including the brain.
Additionally, melatonin metabolites are also potent antioxidants and radical scavengers and have shown the ability to protect the blood brain barrier(BBB) and maintain its integrity. It is already known that the BBB in PwP is compromised and now we know that melatonin can improve this situation if there is enough melatonin available for the purpose. It is already known that a compromised BBB allows neurodegeneration and that PD is a promoter of neurodegeneration. If you put these two facts together, does it seem too far fetched that further neurodegeneration will become more apparent?
It is often said by people with PD that they had symptoms as much as a decade or more before being diagnosed, but they didn't know at the time that the symptoms were of PD. I am of the opinion that melatonin is what helps keep PD at bay during that decade prior to being diagnosed, but when melatonin levels finally decline too much, melatonin is no longer able to offer enough protection to hold back the PD progression to an undiagnosable level.
Melatonin has a healthful and intimate relationship with every organ in the body and that seems like a very important point in human health that is sometimes overlooked.
Art
Age Related Decline of Melatonin in People
Art said; "With age, many people also spend less and less time in the sun and this can also contribute to declining melatonin levels when we are no longer getting melatonin from infrared rays from the sun."
Here's a great video that explains what he's talking about. Relevant part starts at 1:56
google.com/search?client=sa...
Thanks Rufous! - see what I just replied to Art re/ sunlight.
Art, thanks again. This is very helpful. I increased to 2 mg melatonin last night and feel fine today. Some context about sunlight and circadian rhythms: All my life I've been a night owl, often in bed no earlier than 3 or 4 am. And I lived for 12 years in sun-deprived Paris, a city known for its high rate of Seasonal Affective Disorder. I think you are onto something here. I just turned 67, so all these things may have played a part over the long haul. I've been using a smart watch (with a sleep monitor software) since Oct 18th, and started using melatonin on October 26th. One thing I noticed is that, after using melatonin, the amount of my N3 or "deep sleep" increased dramatically. It went from an average of 30 minutes to an average of an hour or more; sometimes as much as 1h40m. These watches are not 100% accurate (they probably under-report), but nonetheless the shift was notable.
"One thing I noticed is that, after using melatonin, the amount of my N3 or "deep sleep" increased dramatically. It went from an average of 30 minutes to an average of an hour or more; sometimes as much as 1h40m."
That's very impressive! And very helpful for your brain, since glymphatic function takes place during slow wave sleep.
Are you using an Apple Watch and native sleep app?
I'm using a "SAMSUNG Galaxy Watch 6" -- since my cell phone is a Samsung, it can upload the results to the phone each morning. It's far from a perfect device; it has to be worn snugly or else it doesn't work correctly, and I noticed a lot of online complaints recently after Samsung updated the software. But I think they'll continue to improve it. Getting back to the melatonin thread, I must say that I feel better overall today, after having increased from 1 to 2 mg. It will be interesting to see where this leads. Are there any brands of melatonin in particular that are better than other brands, or is it all the same?
I really don't know. We've been using a lozenge form under the tongue, but I don't actually know if it can be absorbed sublingually. Hopefully Art will weigh in on this.
I've been using this no-name brand distributed by Rite-Aid, in chewable tablet form. The instructions say "Do not exceed 1 tablet in any 24-hour period." Which is perplexing, since these are only 1 mg tablets.
I knew there was variability in melatonin supplements but this is ridiculous! aasm.org/study-finds-that-m...
Apparently, looking for a "USP" designation is a good idea. Other than that, if you know someone with a ConsumerLab subscription you could ask them to look into this for you.
"... in more than 71 percent of supplements ... the actual content rang[ed] from 83 percent less to 478 percent more than the concentration declared on the label ... Further analysis with mass spectrometry also found serotonin, a much more strictly controlled substance, in 26 percent of the tested supplements. According to the authors, the presence of unlabeled but significant quantities of serotonin could lead to serious side effects."
= That is insane! I'm going to repost this piece. You uncovered something really important.
Well here the doctors call it REM sleep behavior disorder or RBD. Course of benzodiazepine or a typical antipsychotic such as Seroquel.
I have had several serious and violent incidents of RBD, including one that gave me a concussion and could easily have killed me. It is no joke. Here are the interventions I've tried that actually worked:
1. Melatonin. My sleep neurologist prescribed 6 mg at bedtime specifically for RBD, and I did notice an improvement. She started me at 3 mg and said to raise the dose by 3 mg until I saw a benefit; 6 mg was enough.
2. Eliminate alcohol. Probably the most successful intervention. Even a little (a glass of wine with dinner, say) significantly increases the likelihood of an incident. I have not had a major RBD incident since eliminating alcohol, and the minor ones I have had have been non-violent.
3. Weighted blanket. This was the first thing I tried, and it helped quite a bit. I don't need it anymore after the other interventions, but at the time it was a godsend. The good thing about this one is that it works instantly and can keep you safe while the other interventions (which can take time to work) are ongoing.
4. Avoid spicy food, heavy desserts, and overeating in general near bedtime. This one is not as significant as eliminating alcohol but in the same genre. Relevant only within say 3 hrs of bedtime. This was the last change I made, and I have not had a single incident since.
Your mileage may vary, but I would try these relatively simple (and proven) interventions before trying to farm or exterminate specific kinds of bacteria in your gut or shelling out for (yet another) dubious and expensive pile of supplements.
Yes, my RBD diagnosis preceded my PD diagnosis by a couple of years. Initially I was prescribed clonosopine but it caused episodes of depression. I got of it quickly and the psychiatrist I was seeing prescribed mirtazapine, 45mg at bedtime. I’ve been using it for about 12 years. It dependably puts my lights out 45 minutes after I take it. I still have vivid dreams and act out. About 2 weeks ago I started using cannabis gummies before bed, 2.5mg indica THC. It definitely gives me a deeper sleep and reduces, but doesn’t eliminate, the RBD dreams. I am still taking the mirtazapine. I am thinking about weaning myself off the mirtazapine to determine if I can get off the narcotic in favor of a more natural alternative. Anybody have suggestions or similar experiences?
Okay... I will make 3 brief points please:
1: JackBruce2024 is in almost exactly the same place that I am. We both have RDB and neither of us has been diagnosed with PD. I think this makes me a good candidate to share what I have learned.
2: I am not anonymous. I am on the Zoom calls twice a week. Please join and we can meet. Or DM me and I will send you my phone number.
3: I understand that there are mixed opinions on Clonazepam and dementia. I just read a story last week that the correlation between Clonazepam might be due to the condition triggering the prescription and not from the prescription. That said I am in a number of RBD groups and have read many stories of people that got on Clonazepam and had to keep increasing the dosage until finally having to stop altogether, which was traumatic. I have a FB friend that was made suicidal by it and had to be hospitalized. And plenty of people report side effects. And some swear Clonazepam is the best thing since sliced bread. The bottom line is that Clonazepam does not treat the underlying problem and, to me, it is better to just create a safe sleeping situation.
I truly wish you well. This whole situation sucks for all involved.
Tried to tell you there is no simple linearity and whenever you say one thing you are obscuring about eight assumptions and nine things that matter that you didn't mention, because you don't know what you don't know, and you don't even know that you don't know what you don't know, that's what science training is for and that's what psychiatric and psychological training is for, so you can know the difference before you open your yap with something you portray by your bearing as if it is an unassailable standalone fact...but other variables underneath the phrase you use, qualifications that make up very great difference, do make an incredible difference. Then, unaware, you get to come back and claim whatever your original point was, appear now to innocent ignorants that may be harmed by just following your undifferentiated line in order to win a bit of argument to be "right," but not qualifications and proportion, it occurs at the expense of somebody who might thus veer off or if you're in to something either good or bad but for your leading, while completely obscuring the much more complex and individualized situation and truth in every application. Of course, obviously, when you self-medicate to overdose, in essence taking over your own medical supervision, quietly, gee yes then clonazepam can be a problem, what a surprise (sarcasm), (so can water in just the same way) and also what a very limiting qualification compared to the real picture and very uses and known appropriate uses of clonazepam. This is the problem with amateurs. We call it the Dunning-Krueger effect. That's amateur hour. That's the problem with amateur hour. It takes a lot of training sometimes to realize the need one has to be competently able to self-supervise. That's the very reason it takes a lot of effort and work to obtain a license. But I don't think it is unreasonable to expect any old person to notice when they are crossing the line and impersonating a professional, that does not take a great deal of thought... There's a reason they don't let you just print up your own prescription pad... or publish a peer reviewed scientific investigation, or practice under a license. It just takes the right attitude and a little sense of normal human humility to make one's behavior follow what one actually says that I know the difference between me and a (fill in the blank). It doesn't take a lot of training that, having said I have no medical training, I restrict my behavior so that I don't anyway start acting and presenting like I do. It confuses regular people.
A buddy of mine in high school once said: "People who think they know everything are irritating to those of us who do." And that reminds me of Animal House, when Eric Stratton rises to make a debating point when the front is being formally considered for expulsion, says "As a pre-law student..." and his buddy Boone whispers "you don't know any debate, you're pre-med" and Stratton zings back "what's the difference?" and goes on to address the dean and the Greek Council with a legalistic argument... so they can set up an excuse to run out of the hearing.
See, most people don't come into this area having spent a lifetime of understanding the phrase "first, do no harm." But it's not hard for anybody to pick up, really it's not. You just have to want to. It's easy, and it's worth it, start you on a whole great new path and journey, almost automatically.
While this was a lot nicer than the last post you deleted, I really don't understand how you want me to change:
1) I tell people all the time that I have no medical training or higher education. I never profess to have a solution and don't even offer opinions on the efficacy of the things I am doing.
2) When one of the "experts" you refer to actually has a solution to PD, then I will stop trying to work out my own solution.
3) This site is called "Cure Parkinson's". If it was called "Manage Parkinson's by Following the Best Accepted Standard of Care" I would not be participating here.
4) I am sorry there is no way you can block seeing my posts.
Your input is appreciated by many Bolt.
It is thanks to Bolt's posting in Facebook that I found the Health Unlocked group, so thank you Bolt.
Hi,
My husband has REMD. He also lost his sense of smell. He has not been diagnosed though he definitely had PD symptoms.
His active sleep incidents improved when he went on gluten free diet, avoided lectins and took a long list of supplements. He also has a long list of food intolerances. Member Boscoejean also has recommendations he made to deal with REMD.
I do not know if reducing REMD stops progression or it masks symptoms. I think it is important to reduce or halt such incidents because it has effect on quality of sleep.
I joined this forum in 2019 and discovered B1 and that’s when our recovery journey started. In 2021 a reversal of symptoms -balance, driving, slowness, frozen expressions- using coronet duo and taking PS128 after Farooji posted about the small clinical trial. I have posted about this and shared with members here.
He also takes Magnolia extract which Bolt recommended. I will look at symprove though he already takes pure Reuteri from Biogaia to improve his food intolerances. I did try Akkermansia and butyrate as well but for some reason it gave him discomfort.
Thank you for sharing your experiences so we can all help each other overcome these common challenges and make life better. Please read Lizzy9 ‘s post on Better than diagnosed 3 years ago. Sorry, but I do not know how to put the link here.
Hi Millbrook and thanks for your post. You're probably already aware of the University of Helsinki study from earlier this year (May 2023; see link below) that demonstrated that "certain strains of Desulfovibrio bacteria are the likely cause of Parkinson’s disease in most cases." Since Desulfovibrio bacteria thrives with a high-sulfur diet, I decided to explore ways to lower the sulfur content in the gut. If you google "dr russo low sulfur diet pdf" you'll see an interesting breakdown of low vs high sulfur foods. The study on Symprove from this past January is also enclosed below. In yet another article that I recently came across, the researchers said that one of the four probiotics used in Symprove (I believe it was L-acidophilus) decreases the amount of Desulfovibrio bacteria in the gut. Another interesting connection: It has been known for a while now that aerobic exercise can lead to an improvement of PD symptoms. Why is this? It turns out that such exercise helps to restore a healthy balance to the gut bacteria. I have hesitated to take other probiotics until I can determine whether they are from sources that might be high in sulfur, such as dairy. I also only consume foods that are USDA certified organic, as that can often lead to a lower sulfur content. Desulfovibrio may not be the only cause of RBD and / or PD, but since there are so many solid scientific studies that are pointing to these findings, I believe that it's worth it to use any tools we have at our disposal, such as diet and exercise. (Desulfovibrio has also been linked to other illnesses, such as autism and periodontal illness, the latter can also lead to loss of smell and taste.)
frontiersin.org/articles/10...
frontiersin.org/articles/10...
In a discussion here about desulvfovibrio, one of the studies that was linked to, mentioned that agave inulin (not inulin from chicory) reduced levels of that particular bacteria. Inulin's a prebiotic that can, along with resistant starch, assist the microbiome with production of butyrate. It's a slightly sweet powder that can be added to tea, coffee, yogurt, whatever.
pubmed.ncbi.nlm.nih.gov/262....
" Desulfovibrio were depleted 40% with agave inulin compared with control."
This is exactly the type of info that I'm looking for. Par for the course, a neurologist that I recently saw had never even heard of Desulfovibrio. And this was not a doc somewhere in the boondocks. It was in New York City.
Definitely worth looking into. Think I'm going to myself, mainly from curiosity. Good find! Usually I'm skeptical of microbiome but that's probably only because it's never been a problem for me that I could tell, haven't been able to manage my PD without going there (yet!), which I know makes me very very lucky.
Thank you for all the information. I will look into it.
Jack, with all you're doing to manipulate the microbiome, have you considered getting yours sequenced? Many years ago my better half and I did, with the intention of trying to determine if our dietary changes were having any effect. Unfortunately, the company we used went out of business and I hadn't saved our raw data. 🙄 I do remember that my spouse had high levels of A. municiphila (typical of people with PD) but don't know what desulfovibrio levels were.
I'm considering trying again with the Microsetta Initiative, an outgrowth of The American Gut Project. Here's a link if you want to check it out; microsetta.ucsd.edu/america...
Rufous, Many thanks for the link. I wasn't even aware that such a thing was possible. I'll definitely look into it and will follow up here with any results.
I just checked out the link to the Microsetta Initiative. However after reading their privacy statement it appears that they collect medical date from participants but don't provide you with any feedback afterward.
I'm not sure I understand what your concern is. I just read the statement and this is part of it; "Providing you a report detailing the results of our analysis on your sample, as well as facts and figures comparing your microbiome’s composition to that of other study participants."
Somehow I missed that - thanks. In that case I'll join the study.
Now here's something I just happened on in the last couple of days. I don't know how it relates but it might do somehow.
I only have a few medications but one of them I have been taking for about 10 years is duloxetine.
While traveling I ran out of duloxetine and could not get a temporary supply until I have missed two doses, that is, two days' medication. I don't know I was about 48 or so hours without my pills. Doses are in the morning, about 8:00 a.m.
The second night sleeping my RBD dreams returned, although nothing more than that, a bit of shouting in my sleep but nothing physical. The dreams were quite animated and very nightmar-y. The next night, following my being able to resume the usual morning dose was again uneventful in that regard. Just gone, all as it was.
This coincidence is completely news to me... it's "news." I've no idea as to what it means, just reporting the phenomenon. It's been about 3 days since, and nothing but what I've reported has happened since... No other changes but the two missing doses. Maybe somebody can do something with it.
We ran out of magnolia extract for 5 days and he was thrashing and shouting more than before.
The thing is I never considered it an essential. Now, I would not leave home without it
Millbrook, I'm in the process of ordering some for the very first time. I sounds promising. That and organic agave inulin.
Lol. I just ordered it on iHerb. Agave insulin from NOW
My husband is also on a gluten/ lectin free diet. Also no dairy and eggs. I noticed that when he eats foods containing lectin he will have his active dreams
This looks interesting, although much of it is over my head. But the idea of subtypes of RBD is intriguing: "Clinical subtypes in patients with isolated REM sleep behaviour disorder" nature.com/articles/s41531-...
Watchout for the gas with inulin. It can get extensive.
Art
Art, Are there any particular brands of melatonin that you feel are better than others? I've also noticed that some are USDA certified organic.
JB,
I use the chewable tablet types that you can chew or just let dissolve in your mouth. I don't know that they are better than other forms, but it is what I prefer to use.
Art
What form (powder, tablets, tincture) do you use and what is the dose? Some come in a " 20%" etc so can you be a specific as possible please?
For magnolia extract I buy Honopure and interchange it with Swanson . He takes 2 capsules either or.
Thanks. Interchange? What is that?
He will take Honopure and after a few bottles he will also take Swanson. Basically these two products
Thanks Millbrook - and Happy New Year!
Millbrook, How many mg each are the Magnolia Extract tablets that he takes? I am using the Swanson 200mg, once a day, but I just noticed that they also make a "Swanson Full Spectrum" line that are 400 mg each. Anyway how many mg does he usually take per day? Thanks.
He takes 2 Honopure which are 250 mg each OR Swanson 200 mg also 2 capsules
And here's something else: was about a different topic but what caught me was what it said about sleep. It was about zeolites. Even though it was initially commenting in the area of ADHD, and ADD, there are a lot of cross currents in the brain when it comes to critical arousal, arousal and stimulation, dopamine and REM sleep and maybe even RBD, some of these chemicals definitely pass each other in the night, and maybe stop to chat a little bit. When you think about sleep, dopamine and REM sleep, and the fact that dopamine (our very critical mechanism of interest in PD) and adrenaline and noradrenaline are chemically kissing cousins, maybe even siblings... Together all three are known as the catecholamines. And they are all involved with things like arousal, fight or flight, stimulation, and dopamine, in some ways the kind of link like fingers interlace.
But by then I was too tired to reach for the whole article. But it's available to read with this link below. Maybe somebody would like to tackle it and see what they think. Such things can intrude upon sleep.
