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  • Mannitol, a sugar, has given me back my life!

    Posted by thomas-rutschman on June 23, 2021 at 12:35 pm

    Having read about experiments with Mannitol on this site, I decided to give it a try.  After a few weeks some of my Parkinson’s symptoms had disappeared.  Like I was once again swinging my arms automatically as I walked.  My facial expression came back, after 10 years of Parkinson’s poker face.  My writing is once again legible.   My sore body felt significantly better.

    I realize that since this sugar is FDA approved and can be bought over the counter, there is little incentive for companies to test and market Mannitol.  But if you get the same results as I did, you will be sad you hadn’t started earlier.

    beth-t-browne replied 2 years, 9 months ago 24 Members · 85 Replies
  • 85 Replies
  • gianni-pellecchia

    Member
    June 23, 2021 at 3:09 pm

    Young onset parkinson s, i was diagnosed at the age of 33 .

    I tried manitol and even tryed a brand that cane from israel made specifically for parkinson s people i wanted to reduce L I D.

    I used it for roughly a month but stopped it as all i was getting was a bloated stomach

    • umakant-pancholi

      Member
      June 24, 2021 at 12:24 pm

      How much and how did you take the mannitol powder

    • umakant-pancholi

      Member
      June 24, 2021 at 12:30 pm

      Hi Thomas i am very pleased that you are getting a positive response from using the mannitol.

      Can you plase advice us all how much and how did you take the mannitol powder and where did

      you purchase it from.  Any details will be useful for other people sufferibg from PD

      Kind regards

      Umakant

    • umakant-pancholi

      Member
      July 8, 2021 at 10:42 am

      Hi  Gianni, could you please advice me from where did you purchase the mannitol made in Israel for PD .

      kind regards

  • roberth

    Member
    June 24, 2021 at 11:48 am

    I tried Mannitol for several months, originally the Israeli one then an organic one.  It had no effect at all so I guess it’s different for different people like so much with PD!  Very pleased for you though Thomas,  I hope it continues to work for you.

  • christine

    Member
    June 24, 2021 at 1:37 pm

    I am curious about other people’s experience with mannitol. I used it for 3 plus months, which were coincidentally good ‘on’ months for me, but the stomach upset was too much for me to handle. Seriously, always had to be within running distance of a washroom. So, I’m still not sure if the mannitol was a positive addition to my regime, or not. would love to hear others experiences.

    • robert-li

      Member
      June 24, 2021 at 2:10 pm

      Hi Christine, just a thought… If needing to run to the washroom was your only downside, it could be that your gut biome is unstable.  If you find a way to stabilize, then taking mannitol may no longer be an issue.   For me, I found that sometimes I could eat fermented foods no problem, and other times it was a big mistake!  But now I can eat fermented foods more frequently.  I hope you find your way to more good months!

  • nadine-eidman

    Member
    June 24, 2021 at 2:06 pm

    Would love more information on brand, frequency, dosage along with side effects. Thank you.

    • thomas-rutschman

      Member
      June 24, 2021 at 3:54 pm

      I take a heaping teaspoon in the morning mixed with orange juice.  Though it is a sugar,  it is not excessively sweet.  I live in Europe, so I get it from Spain.  I have no side effects–my other Parkinson medicines keep me constipated, so I don’t have problems with frequent bathroom needs.  I realize it doesn’t work for everyone: Parkinson’s seems to come in many different forms!   All I can vouch for is that it works incredibly well for me!
      <div></div>
      <div>Hope  it works for you.  It seems to clean up the messed up alpha synuclein proteins.</div>
      <div></div>

      • nadine-eidman

        Member
        June 29, 2021 at 3:55 pm

        Thank you. I wonder if the brand matters. Hoping this will help my husband.

  • barry-block

    Member
    June 24, 2021 at 2:10 pm

    I tried mannitol and all it gave me was loose stools. I have the LRRK variant of PD, so perhaps it works on other types of PD. I did have good results eating Fava beans, which are a natural source of L-dopa. These days, I add a daily Macuna capsule to my sinemet CR.

  • pglauca

    Member
    June 24, 2021 at 3:22 pm

    I was diagnosed more than 8 1/2 years ago. I started using mannitol approximately 10 months ago. I didn’t initially notice any significant changes in the progression of my Parkinson’s symptoms, so I wrote mannitol off as a potential treatment. That being said, I made the decision to continue taking mannitol because it helped me maintain regular BMs. A few months ago, I noticed that many of my Parkinson’s-related communication issues (softer voice, trouble maintaining linear thoughts while deeply engaged in conversations like debates, an ability to address tangential topics and then returning focus appropriately to the central topic) had virtually disappeared. Similarly, my medication seems to produce more reliable results, and I have regained most of my self-confidence. In fact, there are times I feel like I am starting to win.

    In addition to mannitol I also engage in regular intensive physical exercise, and I am learning Mandarin Chinese (and I will do whatever else I think will force my brain to forge new neural pathways). While I can’t say definitively that mannitol is a cause for my improved condition, I can say it doesn’t hurt. I hate Parkinson’s, and I do everything I can to be as impolite a host to this disease as possible. I believe mannitol helps. I will continue to take it.

    • beth-t-browne

      Member
      June 26, 2021 at 1:41 pm

      Paul, could you share the exact kind you have been taking? Many on here say they got theirs in Australia (kind?), some in Israel (ingredients?), and Spain. Don’t know what is different in each of those types. I am a bit confused. I have been taking Mannitol for about 5 months. I order it on line from Amazon and the kind I get is made in France, but packaged in the USA. Ingredients just say Quality Standard USP. Not sure what that means.

      I don’t feel any great change yet, so maybe I have not been taking it long enough. I was taking 2 teaspoons in my morning coffee. I just upped to 3 teaspoons. But since it appears different kinds affect people differently, maybe I should try another kind. Yet, it worked for you, but took a long time. I did loose my sense of taste last November, right before Thanksgiving, but it came back several months later, and I was NOT taking Mannitol then. My doctor was shocked it came back as she said it doesn’t. Well, it does apparently. I have tremors and was hoping it would help with that.

      As people respond to this site, it would be nice to know exactly where their brand is from, what is the ingredient, how long they have taken it before it helped, and how much they took. I don’t know if I should continue what I am taking for a certain period before I give up and try another brand for a long time. If some who are noticing positive changes, could pass along the indegrents and amount taking, it would be helpful. Thanks, sorry this is so long.
      Beth

      • gwendoline-jakins

        Member
        June 27, 2021 at 12:33 pm

        Beth, the brand I got here in Australia is the Sosa brand out of Spain.  I’ve resorted to buying it on eBay  as well to try a different brand when my supplier ran out.  I don’t think any of these are Australian.  I’m hoping we can get my husband’s sense of taste back, so will keep trying other suppliers.  Will try Bulk Supplements next.

        Gwendoline

      • paul

        Member
        July 7, 2021 at 8:19 am

        Gwen, I’am also in Australia, Townsville. I’m also very interested in mannitol and will try it as soon as i can get some. I’ve found this mob in victoria,also up here in qld who list the Soca brand and mannitol in 500 g jar (no Price as yet} I will contact them ASAP and let you know.
        PS I’ve also tried the red light crown device, home made one as per the instructions on their tassie web site. I think it worked initially, then no more improvement to my speech, but I stopped using it when we went away for a few weeks. I still have it and was thinking of trying it again.
        http://www.eustralis.com.au/brand/72/Sosa
        Regards Paul

      • beth-t-browne

        Member
        July 17, 2021 at 5:12 pm

        Hi Gwendoline,

        Thanks for sharing about your husband.  I wanted to comment my episode with lost of taste.  First, I was diagnosed a year ago this month, however, we are sure from some symptoms, tremors and sleep issues, I had it the year before.  I lost my sense of taste a week before Thanksgiving last year.  I was pretty devastated.  I could hardly eat, as everything tasted awful.  The some months later, don’t remember exactly how many, maybe four or five, it came back.  I had stopped the LevaDopa stuff as it made me so nauseous.  So, I was not taking anything at the time.  My movement doctor said it would not come back, but it did.  How did that happen?  Who knows.  I have been doing the Mannitol about 4 months maybe.  I noticed my tremors are better, but no difference w/sleep.  I take 2 tsp.  I still drive, but I notice my memory not as sharp, particularly when I am on the computer and can’t spell a simple word or a word I am trying to type doesn’t come up quickly.  This concerns me, but I am 84, so old age may play a part, but I don’t know.  Please keep us posted on your husband’s sense of taste issue.  And, best of everything to him.

      • pglauca

        Member
        June 29, 2021 at 3:31 pm

        Hi, Beth.

        Here’s a link to the stuff I buy https://www.amazon.com/gp/product/B01KAM9FOO/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1

        I take approximately 1-tbsp per day. The change was very subtle. In fact, I’m not %100 sure my improvements can be attributed in a significant way entirely to mannitol. I also try what I can to remain “outside my comfort zone” in support of my own research related to the stimulation of healing processes in the brain. At this point, though, I do feel that mannitol DOES have a net positive effect.

      • beth-t-browne

        Member
        June 30, 2021 at 4:03 pm

        Thank you so much for reply Paul. I guess it isn’t hurting me since I have been doing this about 3 months, I think. I will check out the site you sent me.

        Beth

  • susan-swint

    Member
    June 24, 2021 at 3:24 pm

    I began using mannitol, 15 g/dy (one heaping teaspoon 2x/dy in at least 8 oz. fluid) 3 years ago for restoration of smell. Some sense of smell first returned after 2 months, though I had heard it might take 6 months or longer, and has persisted…I cannot smell everything or at every time, but it is a great improvement. There has been only one adverse event when using as a sweetener for peaches and milk. That caused severe stomach cramps that I consider due to lack of accompanying fluid. I am in a clinical trial, so would hesitate to comment on symptoms or disease progression in the last two of these years, but have been grateful for the partial return of smell. Still in Parkinson’s disease stage 1A, rasagiline only (+ trial drug).

    • susan-swint

      Member
      June 27, 2021 at 11:48 am

      Addition to the comment above: I am in the United States and order mannitol from PureBulk.com. Resonably priced; fast delivery; no other ingredients.

  • beth-t-browne

    Member
    June 24, 2021 at 3:43 pm

    I am so glad to see all these comments.  I started using Mannitol about two to three months ago.  I was diagnosed with PD a year ago, we feel sure I had it the year before due to shaking hand and sleep issues.  I am taking some I ordered from Amazon and it said it is made in France, packaged in the US.

    I was hoping my tremors would get better, and my anxiety, and my sleep and fatigue, but so far I can’t say I see a change.  However, I don’t think I am getting worse either.  I put 2 teaspoons in my coffee every morning.  Perhaps I should try three.  I have not had any stomach problems.  I knew it could cause diarrhea, so I wasn’t sure how much I could handle, as I am petite and only way 93 lbs.

    The meds they give everybody pretty much when diagnosed made me very nauseous when I had to up it from 1//2 3x a day to a whole pill.  So after two weeks, I stopped it.  I started taking 1/2 3x a day again about a month ago.  I have some balance problems and those remain the same.

    I will keep taking it, and if I feel there is a change I will let people know. Any anxiety and sleep suggestions are welcome.  The doctor prescribed Xanax, smallest dose, cut in half for the anxiety. I don’t take it every day as I think it makes me sleepy, so I take it at night, and sometimes I get 5 hrs instead of 4.

    Beth

    • thomas-rutschman

      Member
      June 24, 2021 at 3:58 pm

      I take a heaping teaspoon in the morning mixed with orange juice.  Though it is a sugar,  it is not excessively sweet.  I live in Europe, so I get it from Spain.  I have no side effects–my other Parkinson medicines keep me constipated, so I don’t have problems with frequent bathroom needs.  I realize it doesn’t work for everyone: Parkinson’s seems to come in many different forms!   All I can vouch for is that it works incredibly well for me!
      <div></div>
      <div>Hope  it works for you.  It seems to clean up the messed up alpha synuclein proteins.</div>
      <div></div>
      <div>Scientists in South Korea are working on gut flora and think that lactobacillus plantarum strain PS 128 is the right one for Parkinson’s.  It’s to early for me to determine whether it helps or not…
      <div></div>
      <div>Check it out!</div>
      <div></div>
      <div>Thomas</div>
      </div>

      • mark-caldwell

        Member
        July 16, 2021 at 11:25 am

        I read about mannitol about a year ago, and I have been diagnosed with PD about 2-1/2 years ago. My neurologist started me on rasagiline (1mg/day) and that’s all I have been on since. I started taking mannitol (1 tablespoonful daily- about 15gms) in 1/2 cup of coffee in the morning. I didn’t want to ruin a whole cup!  I found my diet affects the after effects of the mannitol. Some foods go through faster than others and flatulence is a side effect. I have seen a plateau in my symptoms so far, but still have good days and bad days. I would tell people to at least try it.

    • gwendoline-jakins

      Member
      June 25, 2021 at 7:10 am

      Beth, the research that was done in Israel suggested 1tbs.in coffee for normal weight. Our pharmacist checked the research before my husband started taking mannitol. He reported back that taking more was detrimental. You are not in the normal range weight wise, so I guess it’s a possibility that you are taking too much….just a thought.

      Gwendoline

  • John

    Member
    June 24, 2021 at 4:52 pm

    <p style=”text-align: center;”>Hi All,</p>
    I have had Parkinson’s for about 6 years – tried taking a locally sourced (Australia) Mannitol about a year ago for a few months – unfortunately for me no impact or improvement whatsoever.

    Oh well – at least worth a try based on some people’s experience – but obviously doesn’t work for everyone.

    Cheers

    John

    • gwendoline-jakins

      Member
      June 25, 2021 at 7:08 am

      Oops, meant to say “my husband started on mannitol at the end of 2019”, not 2012.

  • gwendoline-jakins

    Member
    June 24, 2021 at 6:32 pm

    Hi John, our story is similar to yours. My husband’s most serious symptom from the very beginning was apathy (on or in his bed almost all day). Because of this he diagnosed with Lewy Body Dementia (2012). It was the Neupro patch that got him off the bed and he was then diagnosed with PD. All was well in that area until 2019, when the extreme apathy returned. After reading about mannitol and the research being done in Israel, he started on mannitol 1tbs. a day in coffee at the end of 2012.

    Within a week, he was off the bed, talking, reading the newspapers, doing crosswords, going out with friends and more. His foggiest and dizziness disappeared. GraduallY his facial mask reduced dramatically, his coughing spasms while eating disappeared and his voice got louder.

    He started PD exercises twice weekly. He also uses a little peddle bike daily, on the floor and on the table for his arms and goes for a short walk.

    We were hoping that his sense of taste might return, but it hasn’t.

    Mannitol is not just a diabetic sweetener. My husband was in hospital, a major hospital here in Australia, where they told me mannitol has been used for brain injuries for many years. When I then told our GP, he said it was used when he did his training (1979) at another major hospital for brain surgery. As you said, there’s no money in researching it, so there it’s sat for all this time.

    Recently though I thought his facial mask was returning. Also he was coughing from time to time and I thought his voice may be getting softer. Rather than wait and see, we have now started on the infrared (Wellred) coronet. These symptoms have disappeared again. We will see where this leads us.

    As far as the bloating is concerned, it is a major problem for some. My husband had been on Omeprazole for digestive problems (I suspect too much red wine). He started taking it again, so no problems with the mannitol and gas. He doesn’t drink wine now, as he doesn’t enjoy it. He knows he’s drinking wine, but can’t differentiate between a good one and a bad one. I’m still hoping he may get his sense of taste back. Some have with mannitol. Maybe the infrared coronet may help.

    We have a wonderful neurologist, who we initially met at the Movement Disorder Clinic at the Royal Melbourne Hospital and now see privately. He’s been amazed at my husband’s improvement. We still go to the Movement Disorder Clinic as well, because our neurologist likes their opinion. In fact we have an appointment in July with Andrew Evans, who runs the clinic and is one of the top PD neurologists in Australia. He rang for a phone consult recently and couldn’t believe what we told him. He honed in on the fact that my husband never sleeps during the day at all. He’s up at 7 am and goes to bed About 10.30-11ish. Consequently he now wants to see him.

    What a journey we are on.

    Gwendoline

  • kathy-bettles

    Member
    June 25, 2021 at 5:15 pm

    Hi! My husband has been taking Mannitol for almost a year and it definitely helps him with masking and falling. We switched brands and those symptoms returned. We went back to the original we bought on Amazon (the cheapest one and has the words Kitchen Alchemy in the title) and those symptoms subsided. Other symptoms, such as freezing and weak voice, have gotten a bit worse, but we will take any help he can get. He started with a teaspoon and gradually worked up to 2 tablespoons a day – mixed in with juice/10 oz water mix.

    I say give it a try. And please keep posting things that work for you. We live in the US and it seems that all they want to do is prescribe dopamine and exercise – which are important, but not always as miraculous as some make it sound. All the things being studied are taking SO LONG even though so much money is being invested. I am glad to see a new protocol being pursued on the UK to speed things up. And I appreciate Parkinsons News Today for being an invaluable resource for the PD community.

    • gwendoline-jakins

      Member
      June 25, 2021 at 6:30 pm

      Thank you Kathy, I will try your mannitol. I’ve heard this story before. A PD patient was using mannitol from a supplier in the US and bought it elsewhere when it was no longer available from that supplier. He then lost his sense of taste again.

      The discussion that evolved from this patient’s report mentioned the source of the mannitol,as in seaweed, mushrooms etc.

      I’ll try Amazon, if I can get the same one as you. My initial experience in ordering mannitol from Amazon back in 2019 was a disaster. When I saw that the mannitol was coming out of China I wasn’t happy, as we have no idea as to what their controls are like, if any. Anyway it didn’t arrive and I got a refund. No doubt Amazon has a more reliable source now.

      I’ll report back if anything changes.

    • gwendoline-jakins

      Member
      June 25, 2021 at 8:26 pm

      Hi again Kathy,
      I’ve remembered the supplier in the US that supplied the mannitol that restored a PD patient’s sense of taste. It was Bulk Supplements. They ran out of supplies, and that’s why he changed suppliers.

      The interesting thing is that this company gets supplies out of China, so it could be from your source. A member reported that when he queried why the company says it’s products are American, they said they can do that for some reason none of us could understand. This was reported on the HealthUnlocked site. I’m sure they won’t mind me mentioning that here, as this site is mentioned regularly on that site, along with links.

      Regards
      Gwendoline

      Ps when I looked at Amazon, the only supplier they show is Bulk Supplements ?

  • thomas-rutschman

    Member
    June 26, 2021 at 12:43 am

    Since I live in Europe, I order my Mannitol from Spain (Sosa Ingredients, 08180 Moià, Catalunya).  It sure works for me!

    • gwendoline-jakins

      Member
      June 26, 2021 at 6:29 am

      Hi Thomas,
      Sosa is the mannitol we have used all along, but the wholesaler here in Australia has been out of stock and may not bring it in again.

      So I thought that, although it did wonders for my husband, we might try another brand in the hope that he may get his sense of taste back, as a couple of PD people have. I have bought one lot off eBay. My husband has just started using it. Maybe we’ll try Bulk Supplements in the future. Pity about the price. Sosa was so cheap.

      Regards
      Gwendoline

  • thomas-rutschman

    Member
    June 26, 2021 at 4:26 pm

    Can you order Mannitol made by Sosa from Spain yourselves?   That hasn’t been too expensive, about 30 US$ for 1/2 kg of the powder.

    Good luck!

     

  • denise

    Member
    June 26, 2021 at 4:50 pm

    What dose are you taking and how often? How does this equate to synthetic dompanine, such as sinemet? I ordered some off the internet for my husband,
    but was concerned when it arrived as a powder in a lab-like container, with
    no instruction. Your insights?

  • thomas-rutschman

    Member
    June 27, 2021 at 2:59 am

    I only take a heaping teaspoon in the morning with my orange juice.  I assume a person’s weight would influence the dose.  (I am 5’8″ and weigh 90 kg. ) And as I understand it, the Mannitol helps clean up the alpha synuclein protein clumps in the brain.  And since it is a FDA approved sugar, it is sold as such, so there would be no Parkinson’s instructions.

    Good luck

    Thomas Rutschman

    • gwendoline-jakins

      Member
      June 27, 2021 at 6:28 am

      The initial research ( which I got our pharmacist to check) said 1tbs. in coffee. From what I’ve read on forums, people seem to take less and get results. Others get no benefit. My husband takes 1tbs. It’s all trial and error, I guess.

      Regards,
      Gwendoline

      • beth-t-browne

        Member
        June 27, 2021 at 3:11 pm

        Thank you. I have been taking 2 tsp in my coffee and that is all. I knew it could cause trips to the bathroom if taking to much. Last week I upped it to 3. I only weigh 93lbs, so I am careful with most things. But, I have not noticed any change, so we shall see. Depending on things, I may try 1 Tbs down the road. Nice to hear you spoke to a pharmacist.

        Beth

  • robert-li

    Member
    June 27, 2021 at 12:31 pm

    Hello all, if you’re willing to try mannitol to reduce alpha-synuclein aggregation, you might also want to make sure your vitamin C and glutathione levels are optimal.  Vitamin C and glutathione can apparently help reduce the production of alpha-synuclein, so you won’t be fighting a losing battle using just mannitol.

    From Oligomerization and Membrane-binding Properties of Covalent Adducts Formed by the Interaction of α-Synuclein with the Toxic Dopamine Metabolite 3,4-Dihydroxyphenylacetaldehyde (DOPAL)* – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4646016/

    Taking into account the importance of DOPAL oxidation in the formation of aS-DOPAL oligomers, the effect of the antioxidants ascorbic acid, selegiline, melatonin, trans-resveratrol, mannitol, and superoxide dismutase (SOD) (60 units) was evaluated. We found that ascorbic acid and glutathione are capable of inhibiting the oxidation of DOPAL and diminish the DOPAL-stimulated formation of alpha-synuclein dimers and trimers.

    Glutathione production by cells in the brain requires the amino acid cysteine, found in meat and sulfur-containing vegetables. It also requires good digestion.  I use NAC supplements and digestive enzymes since my digestion is variable.

    Beth, can you name the brand of mannitol made in France and available on Amazon?  Thank you.

    • beth-t-browne

      Member
      June 27, 2021 at 3:17 pm

      Hi Robert,

      The brand I get on Amazon says on the front, “Mannitol Powder and it has a large MB printed under that, then “Mannitol Balance”. Down the front and to the right, it says “Made in France, Packaged in the USA. There is also more info about the ingredients. The net weight is 35.27oz (1000g)

      I only weigh 93 pounds, and have problems with a lot of meds, so I started out with 2tsp. Last week I upped to 3tsp.

      Beth

  • gwendoline-jakins

    Member
    June 27, 2021 at 12:32 pm

    Hi Dennis,

    i don’t think there’s any connection between either of those drugs.  Google “mannitol and Parkinson’s Disease “.  A lot of info there, including scholarly articles.  I imagine the trial, which should have been completed by now, didn’t get started due to Covid.  It’s now saying 2022, although that may not be updated.

    You won’t get instructions, as it’s being sold as a diabetic sweetener.  The initial research, which our pharmacist checked out, suggested 1tbs in coffee once a day.  You may need something for gas.  It seems to be a problem for a lot of people and is mentioned in the research.  My husband takes omeprazole, which he’s been on before PD, probably because he drank too much red wine. ?.  Now he doesn’t drink wine, as he can hardly taste it.

    Gwendoline

  • thomas-rutschman

    Member
    June 27, 2021 at 3:25 pm

    Beth,

    If you have bathroom issues, I would cut back on how much Mannitol you take.  And give it a month or two to give results.   It took a while for it to give results my wife reminds me.  The fantastic thing about Mannitol is that it seems to reverse the symptoms of Parkinson’s. There is nothing else that can claim that as far as I can tell…

    Good luck

    Tom

  • umakant-pancholi

    Member
    June 29, 2021 at 11:27 am

    I have purchased Manitol sweetening powder from Amazon. I have not started using it yet as I wanted to know the dosage.  I will start with 1heaping table spoon in my breakfast or in my tea. I will post if there is any change in my PD. Please note that I have stage 1 ideoPathic  PD I do not have any tremor but my hand writing is getting smaller and I have freezing in my legs. I will keep this forum up dated if I notice any changes.

    Kind regards

    Umakant

  • nadine-eidman

    Member
    June 29, 2021 at 4:10 pm

    I am thrilled to hear about your experiences. Thank you for this forum and to those who are willing to share. Will give mannitol a try and be patient with it. Seems if it works, it takes a few months.

  • thomas-rutschman

    Member
    June 29, 2021 at 4:54 pm

    Yes, Mannitol does seem to take a few months for it to work.  But that makes sense if it is cleaning up the alpha synuclein deposits.  I do  take vit C as was suggested on this forum. When Mannitol is used in a hospital, it is given by I.V. for example to shrink the size of a brain that has had a concussion.  We are using it as a powdered sugar and is not dangerous ingesting it.  It is  FDA approved as a sugar–used to sweeten chewing gum or for people with diabetes.

     

  • high-ya

    Member
    June 29, 2021 at 11:17 pm

    I graduated from hospice after 18 months – no better but told there was nothing else they could do for me so – as a previous medical provider I started my research – in doing so I found a book called minding my mitochondria by Terry Wahls – she was a VA practicing provider who went from riding her bike 18 miles to work to a WC in 6 mo – it took her 5 years to get out of the WC and start riding her bike again – in it she recommends a strict diet and many supplements – NAC or N-Acetylcysteine is an antioxidant the helps produce mitochondria as well as increase the production of glutathione – glutathione is the master detoxifier in the brain – antioxidants like vitamin C and many others help reduce ROS or reactive oxygen species – but I believe the major affect is producing mitochondria – there are between 1 & 3K in each cell in your body – alpha synuclean affects pretty much every cell so taking it at the recommended dose of 1GM 3 times a day has been one of the things I do for years now – 6-7 since I got off hospice – I have a Parkinsons Plus disorder called MSA or Multiple systems atrophy – I also found mannitol helpful – I took it as recommended above but the brand I got included caffein in the ingredients as the studies I found included that – I also found a study that reversed disease in 5 of 7 patients using IV Immune Globulin – I’ve been getting that every 4 weeks for years as well – I take a boat load of supplements but do not take sinemet or any kind of levo-dopa – when I was first diagnosed with Parkinsons I tried it for several months on escalating doses and knowing the long term risks of continued use and no benefit decided to stop it – at one point I was on 3 drugs to raise my blood pressure – I am now on only one – I also found a study from Korea indicating that the reportedly dead neurons in the substantia nigra – mid brain – specifically the caudate nucleus and putamen are not dead but in a senescent state and or asleep waiting to be awoken – they reversed disease in mice and I believe I am doing the same – I can – with a cart – play 18 holes of golf – last summer I walked 9 holes and hope by the end of this year to walk 18 on relatively flat courses of course – I believe and this is my personal opinion – that this disease can be reverse and most would say I am living proof of that – I still have issues and diet clearly is a major component – barrier disruption and disbiosis are major players in this and altho my earlier diet was as recommended by Dr. Wahls I have since gone more ketogenic as sugar – not to saw mannitol but most others sugars – lots of different names for that – produce insulin – insulin is toxic to dopaminergic neurons while ketones or beneficial – ketone strips are available at most pharmacies and super stores – I would also suggest PH strips as most will be found highly acidic – there are various ways to alkalinize your ph – everyone should also be tested for their vitamin B12, D3 and magnesium levels and adjust accordingly – I researched vitamin D3 heavily and found that the recommended level is artificially low – everyone should be at or above 100 – those are just some of the things I’ve done for myself and are in no way medical recommendations – I will included my name – website and a few links in another message as I think they might be deleted from with this message and I wouldn’t want that – hope is available to us all if we look for it – peace and be well to all – sincerely – Kevin

    • ak-jones

      Member
      July 5, 2021 at 8:34 am

      I appreciate you sharing your knowledge, I will try many of your routine supplements, I would love to to be able to walk  to enjoy growing a vegetable garden.  My Parkinson comes from being sprayed with agent orange (USMC combat in Viet Nam), I have been diagnosed as Stage 3 Parkinson.  It is awesome that you are no longer in hospice. God Bless.

      • high-ya

        Member
        July 11, 2021 at 9:35 pm

        I too am a vet – 100% Service connected altho they do not consider those on the DMZ in Korea agent orange victims – surface contamination for 10-15 years while digging will get you Agent O for over 100 years – all those fox holes – spraying around camp blah blah blah – you prolly got 100% automagically – I had to fight with them for 8+ years and now – well – like I said – I can walk short distances – my balance isn’t very good – my blood pressure remains low with the meds but I don’t want to take them all – my feet swell up like balloons – anyway – there is a lot to do for detoxing your entire body – figure out your transit time and if its less than 24 hours start a detox regimen – don’t buy a liquid you drink – it takes lots of things but once started you need to bind the toxins with activated charcoal or you will reabsorb the toxins and get sicker – that is the short story – the long one will be in a book some day!

      • high-ya

        Member
        July 11, 2021 at 9:38 pm

        Oh – be careful with activated charcoal – it can bind medications too so take those when your not taking the charcoal!

  • high-ya

    Member
    June 29, 2021 at 11:45 pm

    while my second post remains in moderator hands – I will add that – there is a bunch to know about the immune system and the gut brain connection – the lymphatic and the Glymphatic systems and how helping them drain properly will help the immune system with detoxification which is also something we all should know about – I could go on for days as its taken me several years of arduous study to amass the information in my head – much of which is posted at the sites linked in my second post awaiting moderation – but again – research and consultation are mandatory to make progress instead of standing still which frequently results in sideways falls – so – keep moving forward – the person that mentioned the genetic form represents less than 10% of cases – the rest are idiopathic and as Dr. Bruce Lipton – a genetic/cellular biologist who studied stem cells in the 60s reports that disease is much more environmental than we have been told which suggests that we need to take a good look at our water source – our air and our food – glyphosate is deadly to our gut bacteria – Monsanto knew it when they applied for approval by the FDA and didn’t say anything about it – much more to say about that but if your eating GMO foods your eating roundup – poison to all beings be they anything with the shikimate pathway – just food for thought!  I guess I have more energy today than usual and with the unprecedented heat up here in Washington I couldn’t play golf so – here I am – any replies I will get to as time/energy permits!

  • charles-h-levin

    Member
    June 30, 2021 at 8:44 am

    Thanks, Thomas, for posting … I am about 14-15 years in with PD but only diagnosed two years ago …. and, thankfully, still very mild symptoms (long story about that) … Meanwhile, I have been aware of the Mannitol discussion for some time … my doctor pooh-poohed it, but I remain curious and after reading these posts and an article I’m providing a link to below plan on trying …

    My girlfriend found the aforementioned article about the science behind Mannitol on PNT … https://parkinsonsnewstoday.com/2020/07/29/the-science-behind-mannitol-how-a-simple-sweetener-may-help-parkinsons-patients/

    The Israeli scientists in this story have a venture called CiniCrowd, which seeks to address many solutions to a variety of diseases that are being ignored by the pharmaceutical industry … the link to CliniCrowd is … https://clinicrowd.info/

    I plan on registering to find out what I can … Particularly, what brand were they using? What dose? Should you take this on an empty stomach? That last one raises the question of whether it needs an empty stomach to cross the blood brain barrier (like Levadopa) to be truly effective.

    For that matter, to those here who said they didn’t get any results, did you take it on a full stomach or with some food at all? And to those who experienced a reduction in symptoms, did you take it on an empty stomach?

    cl

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