Hello all!
Has anyone had any experience taking NAC? Any information is greatly appreciated. Thanks.
Hello all!
Has anyone had any experience taking NAC? Any information is greatly appreciated. Thanks.
Thx! How much do you take per day?
What does Mannitol do? I know it’s a type of sugar replacement and an actually can give you gas LOL but I’m not sure what it would do for PD? Have you noticed any benefits?
Yes I just read some more on that and I find it very interesting. I’m definitely going to consider it and look more into it.
Gwendolynj has a post on Mannitol. It is from PubMed so can be considered authentic.
How very misleading...simply appearing in PubMed does not make anything authentic, nor does it render something more likely to be authentic than if it did not appear there. Please do not mislead people with impulsive ignorance, its worse than saying nothing. "I don't know" is among the most powerful civilizing phrases in language.
Sorry MarionP but there is so much BS posted that to quote a scientifically verified piece of research and to be questioned about it really makes me wonder what you are on about? If you can't rely on pubMed what can you rely on?
What's in PubMed is not necessarily peer-reviewed. There are also some journals that claim to be peer-reviewed but have very low standards*.
There's also good quality, peer reviewed research, particularly from Japan, that does not get indexed in PubMed. I've also noticed that PubMed has not been indexing things very well these past few years - sometimes they don't add subject headings at all (MeSH headings), sometimes they mis-apply them and they don't seem to be creating new ones to keep pace with research. I guess they figure full text searching will take care of everything, but it is not really the case when you consider the problems you can have when searching terms like 'lead' (as in the heavy metal). It's a shame.
I prefer to link to PubMed when possible, though, so people know they are clicking on a safe link.
I'm afraid if you confuse a public info summary base with actual scientific ethic and rigor that belongs with real research process and journals and peer review, you are dangerous. Please educate yourself before giving advice that could be dangerous and done out of ignorance. I can't tell you what I am "on about" if you don't understand the basics of research publication and the very heavily profit oriented industry that it has become. It's nothing more than a search engine, not a quality or research ethics screen, because it can't be, that takes really into the billions of dollars that research industries now already devote just to "production," not quality.
Research today is a business, and a serious business. Business. BUSINESS. Business runs on competition and money when the money for it must earn a financial return, which it has to do today because everything has to do that today. Ask any person here who has participated as a professional scientist or someone who has had to use professional science-consuming skills and use science published information to provide services that do not harm people. Perhaps you wouldn't ever understand until you have had to serve in a profession that requires professional standards AND professional liability insurance.
And then there are those who, offered a free cannon, trusts, not thinks (in fact doesn't bother to think) that he will be safe if he sticks his head in it, because why would someone just give them a free cannon and not make it safe?
I much prefer Ryothemis's polite explanation so didn't finish reading yours. Sorry.
What you "prefer" may not be enough. It's just a forum, like this one. No assurances implied, much less stated, offered, or guaranteed...and no charge for anything, including interpretation of whether there is any risk. It's just a naked free listing service, period.
Better to pursue a little personal education I think. Consider it. Consider making fewer assumptions, for your own benefit or safety or just plain interest in something besides what you presume you know. It's not a bad thing.
"Why don't you ask Google: Can I trust PubMed? What is PubMed? What does PubMed do?"
We live in the most educable age in history, far and away...and never has it been so easy to just pick up and learn. But you have to want to. It's so easy. Just think you don't know it all and would like to know why, and ask your keyboard. "Google, how can I learn? How can I filter and learn to be critical, and save myself? Is it hard? Not if you can type in a forum like this, not any more. It is in fact super, super easy.
And then take a look at the many industrial activities noted, just of self-reviewing by journals who for the most part are also struggling with their own business conflicts-of-interest (an arm of the publishing business, financial survival, jobs, careers, etc.): which small effort in response is this little service that has been operating for many years, have a look at their archives and sign up for their letter (it's free though it is very expensive to produce, given the professional journalistic and scientific skills and time required):
retractionwatch.com/ Great stuff.
A real eye opener.
But be careful: to people who want to know nothing, and seem desirous of only feeling something while hopefully avoiding the potential disabling discomfort and fear of actually learning and knowing something (like finding truth is not quite as easy as taking a nap): those people must beware...your scales may fall if you read much. And if you look at their index, oh how much you will see...like a tiny blip on a large, large iceberg.
And do have some fun learning. If all you can do is believe what is put in print in front of you, boy do I have about a million advertisers who want to sell you things. All you have to do is "believe." And especially, they need you to do nothing else BUT believe. They certainly don't want you to think...just spend.
How do you think the world works, anyhow? Do you think it grows on trees? Are the HU people donating their time on their holiday? Everybody has to eat, everyone has to produce or else get someone else to do it for them. Everyone. So how do the people at HU eat? They haven't charged anything from us that I know of...and they still have to make a living to eat, feed their families, pay their bills. How do they do it? Same as everyone...same as scientists, same as publishers, same as everyone...they sell. If they can't get you to BUY, with real money, THEY don't eat. Neither do you. Do the arithmetic. Just a bit.
And this is for everyone reading. If you get something for free, a service, a product, then YOU are the product. If you don't pay for the product, then YOU are the profit. Has to be or it couldn't be. Here too. and at PubMed and everything else. It can be no other way. Even plants have to produce something, we all milk off of that...and if they didn't, nothing else could exist either. The consumer is also somebody's food.
Hey Marion, we are all here to help and be helped and there are two ways to reply to someone you feel needs correcting or whose comments need clarifying.
Thank you gwendolinej. Hope all is going well with your Mannitol, L-Serine, and coffee cherry concentrate trial.
Does L-Serine work?
This is the article I found relating to L-Serineau.iherb.com/blog/l-serine-...
I was not aware of this Marion. I had blindly trusted PubMed. Thank you for informing me.
You're welcome, some people just do not like their bubble burst and respond aggressively to anything differing from their comfortable phantasies, unfortunately hypersensitivity and pretending to be fragile so they can manufacture feigned offense is a big PC pastime these days. And I first started learning that in undergrad studies, one year of which was even in merry old England, where the college made it clear that American senior students a year from college graduation were underprepared for college compared to our Brit counterparts, and in terms of preparation, were compared to them the equivalent of someone who'd not cleared their "A-Levels," whatever that meant...or so several professors mentioned over the year to a number of su visiting American students...and it kicked me in the arse and got me on the road to growing up. A luxury some no doubt never enjoyed. Always was grateful for that year. Went back to visit one of the profs 10 years and several degrees later, he wasn't especially impressed, so I bought him a lager to thank him for the reminder that the need to learn never ends...if you stop, you might prematurely end up at "room temperature".
I am a sensitive person made more so by the stress of PD so I am very sympathetic to people who are also sensitive. Communication styles aside, you informed me of something I am grateful to now know. Thank you
No need to feel concerned...Sensitive and thin-skinned are not the same things.
Sensitive can take a tiny bit of truth without lashing out, and can respond the way you do, there is mentation. Thin-skinned is an affectation, a large amount of which can vary from almost normal to frankly pathological and the amount can vary greatly depending on whether the wielder is given to self-indulgence and whim. Games people play. People play games. Consider it not.
There is an expense involved in learning, surviving, benefiting...we don't always like it and sometimes want to have something or someone to blame...but it need not be large if you "think" 'well, I can handle a few words.'
Anyway you're in good stead, it's someone else tonight who doesn't like the mailman and stepping on Getz and me...to "protect" someone who doesn't need it, and upbraid someone who doesn't merit it. Knowledge does cost something, even if it isn't always a lot and perception of the cost is sometimes exaggerated. Anyone who has really ever been actually attacked or shot at or whatever knows the difference between that harm and the perception that a word or two of frank conversation is the same...it isn't. But if someone doesn't stand up to it, it can become so...in fact, tends to.
I think we should at all times remember that everyone on this forum is dealt something very challenging or is helping someone who is and with every communication we have the opportunity to lift and support each other. One need not sacrifice kindness for the sake of honesty and quest for knowledge. We can be honest and still be kind. As I previously said, you informed me of something I am grateful to now know.
Thank you.
For me, Gratitude feels much better than judgement and condemnation.
Night night
Take a substantial amount of NAC for reasons other than Parkinson's. As for as I am able to tell it has not helped the Parkinson's any.
I am not able to tolerate the recommended dose of mannitol due to bloating and gas. I recently started taking a small dose, about a gram, three times daily. I am able to tolerate that with no trouble and it does seem to be helping.
Interesting...I ordered Mannitol to try, and I know about the gas and bloating, so we shall see if my body can handle it.
The more expensive mannitol product, Syncolein adds alpha-galactosidase, the active component in the antigas supplement Beano. It is less expensive to use a generic alpha-galactosidase. Here is a link to the Syncolein product :
Here is a link to a generic alpha-galactosidase product that is less expensive than Beano, but with the same active ingredient :
walmart.com/ip/Equate-Gas-a...
Art
It should not make a difference since mannitol does not have the type of bond that the enzyme breaks. If it did you would be breaking down the mannitol and making it useless. quora.com/Is-mannitol-a-sub...
I wanted to show a less expensive option to Syncolein, because alpha galactosidase is what they use in their product and several forum members have mentioned satisfaction with Syncolein. Their product is $55 plus $35 for shipping for a canister that contains 60 tablespoons and is supposed to be a 2 month supply for people who weigh under 200 lbs.
A kilo of mannitol costs $24.50 from Pure Bulk and a 100 box of generic alpha galactosidase costs about $5 at Walmart. So this offers a significant discount option from the Syncolein product. The trade off of course is that it is a little less convenient.
Art
NAC is good in assisting in the production of glutathione , which in your body is a natural master type antioxidant. As far as helping Parkinsons i don't think that there will be any immediate help, however building up glutathione in your body will never ever go astray. As for mannitol its a sugar replacement/ diuretic product hence the gas and bloating, it won't stop Parkinsons progression however there are people on this pages that say it provides relief of their symptoms in the meantime
I thought mannitol claims to slow progression? I’ve been reading so much that perhaps I’m confusing it with something else. Maybe the study claims it slows progression but it is false?
Well I just ordered some so it should be interesting in terms of taking it. I hope it’s just not too sweet.
Hi, I'm Older and wondering what NAC is. My hubby has PD since 2013 and still on just 2 Car/leva daily. I talked him into taking it in the AM instead of PM because it seemed his newly noticed hallucinations were worse in the eve. Seems to have helped. He also takes an agonist during the day but there have been incedences of falling or passing out. The last one was scary as he seemed incoherent when I got him back up so called 911. He was given a CT and EKG, blood and urine tests. He was home in 2 hours, as soon as he could answer questions. All tests came back normal so what caused it? He doesn't remember any of it. His Dr and Nuerologist both suggested low blood pressure. He was fine before the fall. I suggested the agonist, Selegeline, might be the cause and both said his dose was too small for that. Does that mean a larger dose would? He doesn't have noticeable symptoms but it does take him a bit to get started walking, and he's slow. I notice tremors but they're not bad. Since that incident we have moved to a Senior apt complex. We are 78 & 76. Our kids are supposed to be fixing up the house. A friend here, who is older, 90, has a lot of leg movement when sitting. He takes 4 carb/leva a day but not sure of the dose of the pills. . Uses a Walker due to surgery tho he is healed. I'd love to hear of something that would help him. We see such a wide variety of symptoms in our PD Support group tho there hasn't been one for months due to Covid. We miss it. We got our first shot Sat. I was dubious about it but felt it was right since moving here. No neg effects except aches but are fine.We wear masks when out of our apts. and if all have their shots maybe we will only wear masks going elsewhere. We have dinner in a big dining area, with rules...no masks but 2 or 3 to a table. Wishing everyone well. I'm in the Fibromyalgia group here too. M.A. In USA
Hwp is taking NAC capsules daily as do I and have had no side effects.
Hwp is 2/day - 1 at noon, 1 at dinner. As recommended by our nutritionist.
Dear Rita,
I take 600 mg per day of NAC on recommendation of my friend who is a pharmacist. I take 300 mg in morning and 300 mg with dinner. He read about it from a doctor who has Parkinsons and it was on the doctor's short list of supplements. I also take BroccoMax which hopefully ends up as sulforaphane;
juvicell.com/sulforaphane-l...
I take this only twice a week on the advice of Albert ( who is active in the support group). Best Wishes to you and you are in the right place for all sorts of supplement advice! Exercise is the best and what will REALLY help.
Paul
Interestingly enough, I started taking it yesterday. I took 1200 mg in the morning along with 100 mg of amantadine and 3 teaspoons of Mucuna powder and I was symptom-free for almost 8 1/2 hours!! I thought maybe it was just luck, So I took another 600 mg around 7 PM last night, along with another hundred milligrams of amantadine and three scoops of the powder. Again symptom-free. I’m not saying it’s a cure-all but all I can say is he gave me such relief that I can’t even explain it. The tremors for me have been the worst part and it was just so incredibly gratifying to know that I found some thing that could make the tremors stop for more than a few hours. The only slight downside is it makes you drowsy so I think I’m going to have to counteract that with possibly a little coffee or green tea.
Dear Rita,
Something is working well for me but since I take a zillion things I can't say which one. Be careful not to take too much, I'm not sure if over 600 mg of NAC is dangerous(???). I bought a Nespresso machine and I can solidly recommend espresso with vanilla ice cream (Affogato)
theforkedspoon.com/affogato...
🐒,
Paul
I haven’t heard or read anything about taking too much but I did read an article where you should not take more than 1800 mg in a 12 hour period. I wouldn’t take more than that anyway as it makes me too drowsy.
Hi, which Nespresso machine did you purchase ?
It is the Essenza Mini. Not a particularly new model. The new pods cost a lot more so I am still using the old style. My car dealer has an espresso machine that is very good. It is one great benefit of bringing the car there. I guess I'm helping support it.
P,
Do you think the Broccomax is helping? I was thinking of springing for some; I admire Albert's group for all their hardwork with the sprouts, etc., but I'm not up for that right now.
I looked at the back of the bottle online and it says in order to get the benefit you have to take six capsules? That’s a lot.
Yes, it does seem like a lot. I bought the Jarrow Formulas brand and it just says to take one (500 mg) or two a day.
Paul,
You wrote that you take BROCCOMAX but the link you have posted has another product. Which one are you taking? This is what my husband takes: amazon.com/BrocElite-Sulfor...
May I ask why you take it twice a week? Are there any side effects if you take it daily?
Thanks!
Oops I inserted the wrong link. I am indeed taking broccoMax. Albert experienced some bad effects when he took too much. I am a cautious person and when I heard that I cut back my amount. I believe it works better used in this way. Plus it reduces the cost too. Thanks and best wishes, Paul
Yup, Pure brand.
Hi Miss Rita,
I started taking 500 mgs of NAC a day a few weeks ago. My holistic doc wanted me to take it to help my lungs, due to a recent Covid exposure. I don't know what the lung connection is. I'm not sure if it's helping the Parky stuff, but I'm sleeping better. So, actually, it is helping the Parky stuff. I still wake up at 1 a.m. or 2 p.m., but there's less wandering around the house :). Now I'm not awake enough to want to do anything, so I eventually just fall back asleep. For someone with Park sleep issues, it's been nice.
I had taken NAC 2x/day, 600mg per dose, fro 6 months. No real big benefit other than improvement in smell. Even after I stopped, if I took NAC spontaneously, I always noticed my sense of smell improves for that day. Due to a study I saw about IV NAC (a study of a total of 12 infusions), I did 6 (1x week) infusions. After 6 infusions I stopped simply because I saw no improvement or benefit.
After all this, these days I take 600mg/day NAC orally. Its a great supplement in general.
Hi MissRita, I won't get involved with the technical details of Mannitol. What I do know is that it's used in major hospitals for brain injuries (as told to me when my husband was in hospital ) and by our GP when I then mentioned it to him. "Yes, we used it for brain surgery when I was doing my training in the 1970's". See my post on Mannitol. My husband has been taking it since late 2019. He is amazingly well, and he wasn't.
Our neurologist sent us (after seeing Alan's improvement) two papers, one from the International Parkinson and Movement Society, dated January 2020 and the other from NIH U.S National Library of Medicine, headed Clinical Trials.gov Safety, Tolerability and Effects of Mannitol in Parkinson's Disease (PD-mannitol).
Our initial information came from this site with a link to the Syncolein site (worth a look). I got our pharmacist to check it out and then off we went.
Recently we had a phone consult with Andrew Evans, a very well known Neurologist here in Australia. He runs the Movement Disorder Clinic at the Royal Melbourne Hospital. Our neurologist likes the clinic to see my husband from time to time to get their feed back. He doesn't consider himself infallible, as some do! Andrew was amazed when we filled him in and has made an appointment to see him soon.
I haven't checked to see if the trial they were recruiting for went ahead (a bit difficult, I'd imagine). It's working, that's all that matters, and I'm very happy to tell members about it.
Keep us in the loop
Gwendoline