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Mannitol, a sugar, has given me back my life!
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Correction to my last post … I apparently missed a critical sentence in the PNT article … but Mannitol has no problem crossing the blood-brain barrier …
I will would like to continue hearing experiences here and whether anyone plans on registering with CliniCrowd …
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I would have registered for the clinical trials, but exchanging e-mails with the scientist in Israel I realized I was no help. The only tests given me by the neurologist over ten years ago was: take this medicine, if it makes you feel better you have Parkinson’s… So there is no “before” I can compare with the “after”. So those of you who do feel Mannitol is helping should definitely sign up with the CliniCrowd.
Don’t give up!
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I was diagnosed a year ago this month. I am pretty sure I had it the year before, as I had serious sleep issues and my right hand shook badly. I thought it was too much thyroid. I went to a movement doctor, had an MRI, and said I had Dopamine lacking in my brain.
I am seeing a new doctor in July. I won’t go into all the reasons why, but one is, I get no help from her. I could not handle the usual prescription everyone gets. Made me so nauseous I had to stop. I am petite, weighted 98 but lost down to 93 after that. So, there is nothing that can be done? I have been trying the Mannitol thing for about six months. I am not worse, but the tremors are still there and the sleep has not changed. I did take a tsp more starting about a month ago. So maybe. I always read what people share that they have tried. I get more info from them then I did from her. I also am wondering about the items you can stick on your body Can’t bring up the name right now. I see it helped MS patients, but have not seen anyone with PD rave about them. Also, I read where the antidepressant for PD is Agilent. I asked my new Primary yesterday if he could prescribe that since he thinks I might need an antidepressant. I don’t think I have that problem, but I am willing to give anything a try for sleep. He said I needed to discuss with my Movement doctor. Has anyone tried that? Thanks for sharing your experience Thomas. I very much appreciate people taking time to do that.
Beth
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Dear Beth,
My husband did not take the usual and customary meds to start with. We wanted to postpone the inevitable inefficacy of the meds, not to mention the undesirable side effects of dyskinesias. So here is what we did: he took 1 mg of rasagaline (brand name Azilect, 1mg/daily) and did one half hour of aerobic exercise daily, keeping a sustained or elevated heart rate up for 20-30 consecutive minutes each morning. At first, the exercise brought about undesirable extreme tremors while exercising, but that soon passed over a period of 2-3 months, when he got more fit and recognized how much exercise performed like medicine; for stress management and for reducing symptoms. That lasted 3 years before he went on to sinemet. Fast forward 15 years, and he receives leg & foot botox shots to turn down the dyskinesia movements and toe curling. This is not working, as we know its a side effect of the sinemet over time. We are presently investigating DBS surgery, which would allow him to reduce the amount of his meds and thus the dyskinesias. Wishing you the best. PS- We’ve been reluctant mannitol takers, the bottle I purchased from Amazon says R & D use only, on the label. So, I’m watching these posts to also check that out. -
I have to agree with Denise. Exercise is the very best thing that helps the symptoms of PD. I exercise 5 days a week with virtual classes (both aerobically and with 5 lb. weights). I have not increased my sinemet CR in 2 years and have no dyskensias or freezing. My balance is better than most 72 year olds and my cognitive abilities are only slightly diminished.
I’ve tried all sorts of natural meds (fava, macuna, Lion’s Mane, pre- and pro-biotics, and mannitol) but nothing helps as much as plain old exercise of the mind and body!
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Thanks Barry. I guess I need to exercise more. At 84, not as motivated as I was back in the day. A year after I had breast cancer, and surgery, I went to the gym faithfully, for 20 yrs, and did the weights and treadmill. The last trip to the gym was when I was 73. I then made sure I was walking a lot. Since I moved three yrs ago, I have walked but not every day. I am on my feet daily, cooking, doing my laundry, grocery shopping, etc., but I need to start walking more faithfully. I am two yrs in with PD. I have tremors, terrible sleep problems, and when I tried Rytary, the little anxiety I had got worse. My doctor said it did not cause anxiety. I told her a pharmacist said it could, and the side effects said it could. Even my new primary doctor said it could, and she got upset with me when I understand it can, and she got rather not so nice saying I was calling her to be untruthful. I know people respond differently to a lot of meds, etc. She didn’t believe me, so I see a new doctor next week. She has done nothing for me in a year except hear me talk about how I feel. I don’t have dyskinesias. I have a little balance issues. If I could get more sleep, I think I would not have so much fatigue. But maybe. I hear others talk exercise, so I will start that today, being more faithful.
Beth -
Beth,
Exercise can not be discounted at all. My doctors now believe that regular cardio workouts three or four days a week (for more than 30 years) may have played a role in delaying a variety of symptoms … therefore delaying a complete diagnosis until I was about 12-13 years in.
My doctor (quoting a widely revered study) challenged me to take my cardio workouts up a notch … Doesn’t matter which machine, but I use an elliptical … the key is going at 80-85 percent of your max heart rate for 30 minutes continuously … To do this, I’m on the elliptical for about 40 minutes … it takes about seven to eight minutes to warm up, then I turn on my Apple Watch to monitor my heart rate … I’m almost always in my target zone by the time I turn it on … after 30 minutes, I cool down for about two minutes … I do this four days a week … (your max heart rate is 220 minus “your age”) …
Three days of the week, I use TRX straps and free weights … I also do yoga every morning (which is on a brief hiatus now as I’m recovering from knee surgery) … I did the boxing for some time and left after I thought I’d injured myself … it was arthritis so I plan to return shortly …
Although there is no definitive study on diet, my docs all recommend at least a Mediterranean Diet or Plant Based … I’m mostly doing the latter but not really vegan … I still eat hard boiled eggs and yogurt and seafood occasionally … even meat but very rarely …
All this together … and I’ve lost a lot of weight … my symptoms are not really threatening my quality of life … I did have to give up playing music which I did professionally for about 30 years … that was a drag but life opened many other doors for me … I have a tremor in my left hand and am a bit slow at times … but the Sinemet has helped with both … I’ve been on the same dose for about a year with no side effects …
That all said, I’m still interested in trying Mannitol … I tried registering on CliniCrowd, but never got the email to complete the registration …. I can see on the web site that once you are registered, you can get information about dosing (which appears to vary, I think, based on size and weight) …. I’m particularly curious because I learned that it’s in sugar-free gum, which I’ve chewed for years and am now wondering if it also played a role in delaying my symptoms …
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Hi Charles,
Thanks a bunch for your newsy note. Good to know those 20 yrs were worth it. I have osteoarthritis and osteoporosis and that is why I stopped the gym. I tried going not doing the weights, which the doctor said to stop, but I had a routine for 20 yrs, and not being able to continue, I guess I got disappointed, and thought I would just walk. But I did not do that regularly like I am almost doing now, since I moved. I do climb 3 flights of stairs at least once a day, 32 steps. Sometimes I get in climbing twice. I think I will definitely go for that, as I have a leaky heart valve, and the doctor would like to see me do that. I guess I have not realized I am as old as I am. I am concerned about my memory, short term, so I will discuss with the new doctor. Most people can’t believe I am as old as I am when they see me, and I guess that is good. Being petite probably helps. I think you are to be admired, greatly, for all you do. I am not sure I could do that now, but glad you are feeling so much better. Keep up the good work on your weight also. Thanks again for taking time to write.
Beth
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My cons on Mannitol is the taste is awful, I took it for only two weeks(tablespoon) in my morning coffee and heavy whipping cream. It took three packets of artificial sweeter to be able to tolerate the taste. It overshoots my diet of less than 30 carbs a day.
I will give it another try after I loose 50 lbs.
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My brother a general practitioner doctor reminds me that one should start off gradually as well as taper down if one is quitting. He had also researched the gut-brain connection and suggested intake of acidophilus.
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Thanks Thomas for this info.
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Hello All, you are so inspiring and brave.
I was diagnosed five years ago and feel good. I take Sinemet and Azilect and my symptoms seem to be currently controlled. I exercise daily, am learning Spanish, try to do new things to keep my brain off balance, have begun painting, and take handfuls of supplements. I have two questions. Firstly, I do plan on starting mannose, but I am amazed that you all are able to tolerate coffee. I loved my coffee fix, but I had to give it up because it gave me major shakes. How do you do it? SO envious.Second, given the fact that the biome is off kilter in Parkinson’s, what do you take in order to adjust the gut biome? I’ve heard acidophilus and probiotics and probiotics. Does anyone have insights?
thankyou thankyou thankyou
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I have tried this probiotic for a few months, which a South Korean group is working with called Lactobacillus plantarum PS128 as effective for Parkinson’s. I have been able to get it via France, but I think you can get it in the US as well. My brother, a doctor, researched work people had done on acidophilus and thought that it sounded good as well.
<div>If you know how to make yoghurt once you buy the living bacteria of the first probiotic I mentioned, you can continue making your own if you want to save money. It is naturally in foods such as sauerkraut, Korean kimchi, pickled cucumber…</div>
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<div>I will continue with this probiotic and acidophilus, though I can’t really say I feel any different. But it can’t hurt, I figure.</div>
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<div>Good luck!</div>
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Learning a new language like Spanish is a good way to push brain problems into the future. The new language you learn is put in a different “brain compartment” so you keep your brain more active. Your name, Beata, is Spanish as you probably know, meaning “Blessed”.
Have a good day!
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there are many things to use to fix the gut lining and the gut bugs – there are good bugs and bad bugs – the good ones make most of your dopamine and all of your serotonin among everything else your body needs to work correctly – when it doesn’t get what it needs it starts to malfunction – feeding the good bugs with pre Biotics which is simply lots of cruciferous veggies – different colors – lots of variety – must be organic and even then some will have glyphosate or preservatives if you buy it in the bag – they use lots of tricks to get sugars and other harmful stuff into you – artificial sweeteners are Neuro toxins like inhaled or aerosolized chlorine and fluoride – water filters and shower filters if you don’t have a whole home filter R/O only – adding minerals to filtered water is essential – selenium chlorella and spirulina help with ROS (reactive oxygen species) which affect every cell in your body as does Alpha synuclean – Manitol helps as an over the counter cell wall permeability assistant – in Parkinsons the A-Syn clumps in the cells and destroys the mitochondria while make the cell wall impermeable – there are so many things you can do to help yourself besides exercise which is mandatory but – if you don’t know your B-12 level – your D-3 Level – your Magnesium level – all of these are low in Parkinsons patients – the vitamins like C you cannot take too much – all the antioxidants are needed but especially NAC – it helps increase mitochondrial production and glutathione production which is the major brain detoxifier – helping the Glymphatic lymph system in the brain to drain as well as lymph brushing in general with good hydration is necessary – man – I could go on forever – I just wanted to comment on the gut persons question – yes lactobacillus is one of the gut bugs but there are thousands – there are currently about 5 of the good gut bugs absent in Parkinsons patients ramnosis comes to mind as one (sp) this is pretty common knowledge in research circles – if you use scholar.google.com you should be able to find everything you need to know about fixing the gut – replenishing the good bugs and beating back the bad ones – balance is key with all of them – they’re DNA out numbers ours 99-1 so be kind to our gut bugs and they will be kind to you – getting tired since I’ve been writing most of the day while trying to get thru email and digitizing albums so gonna say good day to you all – think that it took you a lot of years to get here – I expect to live another 30 years or so – I started reversing disease and leaky gut and dys-biosis and neuronal senescence of the dopaminergic neurons 6-7 years ago – after getting off hospice – I started playing golf again last year – I turned 64 last month – everyone calls me a walking miracle and I say it was a miracle I survived life to live long enough to get sick and then live long enough to get better – still working on the last part!
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come on – google scholar link gets the whole post censored?
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Sounds good but my husband with PD has a pacemaker. I need to make sure mannitol is ok’ed by his cardiologist, besides his neurology… Ceci
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Gesus – my post with a link to google scholar is awaiting moderation – if it doesn’t get posted it will be two out of 4 posts censored in the last week?????
Guess its time to leave this place!
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Hi my name is George I am interested in your experience with Mannitol it is good to hear that it makes a bit of a difference I was wondering where you bought yours from I live on the gold coast in Australia and it is very expensive to buy
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I order my Mannitol from Spain. 500 gr costs 24 euros. Google it, it’s called Sosa, out of Moià in Catalunya. Good luck!
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Follow up to the above reply re mannitol with some links and info for those who wish to peruse! Sincerely,Kevin S. Lewis, Medically Retired Veteran
Whats included in this post is not medical advice and should not be construed as such – these posts are for informational purposes only – all changes to a treatment plan should be under supervision and consultation with your chosen medical provider!
PS Item’s posted/sent may or may not be mine and I may or may not agree with them. I am passing along things that make me think – I hope they do the same for you.
View – https://groups.io/g/DietAgainstDisease
Join – [email protected]
Post/Reply – [email protected]
Go to < http://www.lewboski.net/ > for more information about Lewboski and what he did before getting cancer!
“We are not human beings having a spiritual experience. We are spiritual beings having a human experience. We are each of us angels with only one wing, and can only fly embracing each other.” Pierre Teilhard de Chardin, (1881-1955)
“There are two ways to be fooled. One is to believe what isn’t True; the other is to refuse to believe what is true.” Soren Kierkegaard, Philosopher (1813-1855)
“Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, far from discouraging, only adds to the joy and glory of the climb.” – Sir Winston Churchill, “from the essay ‘Painting as a Pastime’, published at the end of Thoughts and Adventures.”
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I bought Mannitol from Amazon. Around $16. So far, I have only used it 2 days but I already notice a change. I intend to keep it up.
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Sounds great! It took me longer than that to feel any changes, but I’ve heard others who say they felt a difference after a few days as well. Keep it up! (What brand of Mannitol do you use?)
Tom
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Please keep us posted.
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The label says super mannitol, dietary supplement (sunshine valley foods)Canoga Park, Calif.
My symptom of relaxing tremor seems less occasional. My leg tremor seems less frequent.
I am encouraged.
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Thomas R- Can you please tell us where you purchased your mannitol? Can you send a link and also tell us your dose? This would be much appreciated. My husband is currently entertaining thoughts on DBS surgery, so if we could hedge that; it would be great! Thanks.
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I get my mannitol from a firm in Spain called Sosa. I take a heaping teaspoon with orange juice every morning. But I would start with half that for the first few days, to see you tolerate it. Mannitol is a sugar used especially for diabetics, and can be bought through Amazon I understand.
Good luck!
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I have been taking 2 teaspoons of the Mannitol I purchase from Amazon for about 6 months. I noticed the 10th of this month, today is the 13th, my tremors were better. I was getting food to my mouth with out it falling off the utensil. I only weigh 93 pounds, so I didn’t not want to take too much. I had to stop the Leva/Dopa last year as it caused too much nausea, and I went from 98lb to 92lb. I need to gain, not loose. Not sure if it is the Mannitol or what. Time will tell. I put it in my coffee in the morning. I only drink one cup.
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Sounds good Beth. I hope you will see other things improve as well. But do remember when you start or stop taking a particular medicine you should do it gradually.
Blessings.
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I just started taking it last week. I started with a quarter teaspoon for the first three days, then moved up to 3/4 teaspoon … a few days later, I tried half a teaspoon … at this dose, my stomach made all kinds of interesting sounds (some like a synthesizer keyboard) … no upset stomach problems, but I decided to tack back to 3/4 teaspoon for a few more days …
No noticeable changes in my symptoms (but I didn’t expect any this soon) but my bms are a lot smoother, which was welcome …
Has anyone else here gotten on to CliniCrowd? I managed to get on there, but found that it can take five minutes for the log in and that much time to shift pages once inside …
I did find some info about a variety of questions (product recommendation, dosing, effectiveness), but many answers were intentionally vague … “everyone is different” …
After reading different product reviews on Amazon and considering remarks in this thread, I decided to go with Bulk Supplements … honestly, the decision was arbitrary as I couldn’t see any specific product getting more better reviews than another … On Amazon, most reviews indicate that the purchases are for people with PD … Most reviews are positive …
Curious (and eager) to know others’ experiences …
cl
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Hi Charles
How did you take the mannitol. Was it with water, juice, it in your tea or coffee or with your bowl of cereal.
I have started with 3/4 heap full tea spoon in a bowl of cereal with oat milk and semi skimmed milk mix. Touch wood I do not have any problems with the stomach. I have been trying it for a week and noticed no change. I will try one heap full tea spoon from next week. I will keep every one updated. I purchased the mannitol from Amazon in UK. It is a product of Spain.
All the best with your trial.
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Hi Umakant …
I take it with water in the morning, right after taking my Levadopa … From reading comments here and Amazon reviews, it may not affect symptoms immediately … some folks report waiting a month or longer … patience and persistence appear to be the key here …
Which raises a question I forgot to put out there (and that I could not find any info for on CliniCrowd) … For those who have taken Mannitol for some time, does anyone know if there’s any problem taking it at the same time as your medicine? Or with food?
cl
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Dear Charles:
Interesting that you mentioned stomach noises. Mine does make noise too, but it did so before I started taking Mannitol (I think!). I take my Mannitol with my medicines–a few minutes after the Levodopa and others and half an hour before breakfast. I don’t know if it would make any difference for me. I haven’t felt the on/off periods others suffer from, and I’ve been known to forget my evening pills until it is time to eat and it doesn’t seem to matter a lot…
Stay in touch!
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For now, I’m taking both meds and Mannitol about 1-2 hours before breakfast … partially because you need to keep food away from Levadopa for at leat 30 minutes and also because my breakfast is a smoothie and I can’t operate the blender until my girlfriend is awake … lol …
How long ago were you diagnosed? And how long after that did you start taking meds?
cl
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About ten years ago I was diagnosed with parkinsonism-but I had it years before without realizing what it was. I remember thinking “if this is how it feels to get old, it sure came suddenly”.
I live in the sparsely populated north of Sweden, and the neurologist watched me walk and said I had Parkinsons if Levodopa made me feel better! So I started on medicines right away. I wanted a more thorough check up so I asked to be sent to the University hospital, but they messed it up and sent me to the district hospital. That doctor agreed with the diagnosis, so I quit trying for something more exact.
At least in Sweden there is a yearly maximum for fees for doctor visits and medicine, so I consider myself lucky!
Blessings.
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