Mannitol, A Life Changer for My Husba... - Parkinson's Movement

Parkinson's Movement
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Mannitol, A Life Changer for My Husband... Our Story

gwendolinej
gwendolinej

I have only mentioned Mannitol when replying to a number of members posts, but I thought I should share our story generally.

My husband was diagnosed with Lewy Body Dementia in 2012. Levadopa appeared to do nothing for him. At this stage his main symptom was severe apathy...misdiagnosed as depression and then LBD. Our first success was when one of the neurologists at the Movement Disorder Clinic he was attending suggested the Neupro Patch. After a few weeks, he was off the bed and functioning, with a new diagnosis of PD.

All was well in that area (non motor) until about 18 months ago, when the apathy reappeared. (We now see one of the neurologists from the Movement Disorder Clinic privately, although he likes us to attend the Clinic periodically, to get a second opinion ). He was starting to think dementia again.

My husband was put on Xadago, with only a slight improvement. At that time, we also tried the B1 protocol, with the neurologist’s approval. Unfortunately, the high dose sent his blood pressure thru the ceiling. He’s now taking 250mg. (We may increase it slowly at some stage).

After reading about Mannitol on this site and following the link to the Israeli research, and then asking our wonderful pharmacist to double check it, we sourced it and my husband started on the recommended dose in January this year.

Mannitol generally is known as a diabetic sweetener.

Within days he started to improve mentally. (At that stage, he was on the bed nearly all day).

He was off the bed, his dizziness and fogginess in the morning disappeared. He started reading the newspapers, chatting and discussing current affairs. Before the lockdown, we went to our friends’ house for dinner, where he chatted all night, till quite late. (We hadn’t been out together with friends for a long time. He wasn’t up to it). He’s now doing crosswords and even 1000 piece jigsaws.

As he is no longer dizzy or foggy, he is able to go to PD exercise classes locally twice a week. He is also using his little peddle bike 4 times a day x 15 minutes each...two with his legs and two on the table with his arms.

Physically, he is still very unstable on his feet. He doesn’t have a tremor. It’s hard to measure any improvement, as we are not out and about because of covid19. His posture is certainly better and his facial mask has almost disappeared.

We are still hoping for more improvements. (Other members say it took longer to see results, but they didn’t have the apathy problem). He has lost to a great extent his sense of taste. We are still hoping in that regard.

When we visited the neurologist a few months ago (before covid19), he was amazed at what he saw. A few days later, he sent us information from the International Parkinson and Movement Disorder Society, on a large trial now taking place. Till then, he had no knowledge of Mannitol.

The fact that it’s been used since at least the 1960’s for brain surgery and brain injuries in major hospitals seems to have slipped below the radar. No research had been done since then because, I guess, there’s no money in it for the pharmaceutical companies. To see the history of this current research see the Syncolein website.

Syncolein has produced a product specifically for PD. I have sourced mannitol from a supplier here in Australia who brings it into Australia from Europe as a sweetener for the manufacture of diabetic foods. It’s very cheap. Initially, I ordered it from Amazon, to discover it was coming out of China. Fortunately it didn’t arrive.

I hope our story helps others and gives them hope that there are lots of alternatives that may work with or without the current PD medications.

Besides this site, the other important fact is that we have a good team of medical professionals around us. Our neurologist is very caring and doesn’t think he knows everything. We can ring him anytime. We also have a great GP and pharmacist.

Gwendoline

60 Replies
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What is the prescribed dose?

gwendolinej
gwendolinej in reply to JayPwP

The dose is 1tbs. daily, preferably in coffee. If you look on the Syncolein site, you'll see a very good explanation of the research, including a video. Any more than that amount does nothing apparently.

JayPwP
JayPwP in reply to gwendolinej

Have emailed donmccammon@gmail.com asking if they deliver to India.

Any other suggestions welcome

gwendolinej
gwendolinej in reply to JayPwP

I just googled mannitol Australia and got a wholesaler here . Lucky, I think. I think Blackburn Distributions has it in the UK. Syncolein in the US has it. I know they ship to New Zealand.

Good luck.

ChrisWF
ChrisWF in reply to gwendolinej

Would you mind sharing the name of the wholesaler from whom you purchase it?

gwendolinej
gwendolinej in reply to ChrisWF

The supplier here in Australia is Eustralis Food. They have offices in a few States. The product itself is from Spain. That company there is called Sosa, sosa.cat

I had to have an ABN and open an account with Eustralis Food. They are very easy to deal with.

I hope it works for you. Keep us in the loop.

Gwendoline

jeffreyn
jeffreyn in reply to JayPwP

healthunlocked.com/parkinso...

JayPwP
JayPwP in reply to jeffreyn

Thanks. Info I am looking for is if anyone can suggest Mannitol powder available or delivered to India? Also any grade or purity to look for?

jeffreyn
jeffreyn in reply to JayPwP

My reply was to your first question, not your second one.

Regarding your second question, try googling Blackburn Distributions.

JayPwP
JayPwP in reply to jeffreyn

Thanks :)

bobpamidi
bobpamidi in reply to JayPwP

Hi Jay, You can buy Mannitol powder through Amazon.in.

Search for "ProFoods Mannitol Powder". 1kg costs about 1200 Indian Rupees. Quality is as good as Bulk Supplements.

JayPwP
JayPwP in reply to bobpamidi

Thanks

JayPwP
JayPwP in reply to bobpamidi

Have ordered 3 packs of 350 grams each. I am currently on week 2 of Solgar B1 HCL 3 grams. Week 1 was 2 grams.

Have stopped Syndopa 100/25 x 3 per day due to no improvements,. Took it on and off for 3 months, and regularly for a month

JayPwP
JayPwP in reply to JayPwP

What is D-Mannose?

gwendolinej
gwendolinej in reply to JayPwP

If you ask Google the difference, you'll get your answer. I doubt they are interchangeable .

gwendolinej
gwendolinej in reply to jeffreyn

Interesting conversation

jeffreyn
jeffreyn in reply to gwendolinej

... and interesting table (hopefully).

Thank you for sharing this remarkable recovery. I am glad to hear that the mannitol is working well for you. I checked with my neurologist and she advised against it, (no surprise there), without giving a convincing reason.

My wife has been home for 7 weeks now after rehab and the LBD diagnosis. I am starting to doubt the diagnosis as she has made a remarkable recovery thus far.

Except for her extreme fatigue most of the time, some stiffness in her arms when she sleeps and an occasional stooping, she does not have many of the LBD trademarks, hallucinations, short term memory loss etc . She sleeps well at night even if she naps a few times during the day. Of course, her Dr thinks that the Aricept alone is responsible for the recovery, not her diet, the B1, or the other supplements that she has been taking. Time will tell.

Question for you. Does the mannitol improves your husband’s stamina?

Cagey84
Cagey84 in reply to EEMaui

This paper from a very reputable journal may help discussion with your neurologist - jbc.org/content/288/24/1757...

EEMaui
EEMaui in reply to Cagey84

Thank you. I will try the product anyway and see for myself

dangilio
dangilio in reply to EEMaui

what diet and supplements is she taking?

would you mind sharing who your neurologist is in Australia?

Thanks for sharing. I have been takin mannitol for few years no. Good stuff. Syncolein delivers to most countries

How does it help. Did you see any immediate improvement as we did, or more slowly, as some members report. I’m still hoping for more improvements physically and, in particular an improvement in my husband’s sense of taste.

What a great account. Very happy for you guys. You're so fortunate to have such a good heath care support team, too. That seems to be rare.

What a wonderful story to read this am. Can it be taken while taking prescribed PD medication, Carbo Levadopa,, do you know?

Yes it can. My husband takes levadopa. he's also on Xadago, which improved him a little when he started on it last year, but not enough to get him off the bed. We've just reduced the levadopa to see if it makes any difference. It hasn't so far.

Yes, we fell in our feet after a few stumbles.

There are so many good medical people, we’ve just got to find them, not accept the mundane. We’ve been lucky.

Hi

Very interesting thank you.

Live in the UK and following your post I have done some research.

The Syncolein website has their Mannitol mixed with other substances which they say you need. The cost is £40 a month.

The Blackburn Distributions is a pure Mannitol powder. It costs £17.40 a pack.

Is your husband taking the Syncolein formula or the pure powder?

Interested to hear yours and others experience before we buy.

Thank you and stay safe and well.

Warm wishes from London.

alexask
alexask in reply to Sherrilltina

I take the mannitol from Blackburn. Works for me.

I get my Mannitol from an Australian company that imports it from Spain as a sweetener for diabetic foods, so it too is very cheap.

It is produced by Syncolein especially for PD and contains ingredients to help with "gas"(as the Americans say). Mannitol can upset the stomach.

Hi! So nice to read your post. I'm in Canada and recently ordered Mannitol online from Canada, although it is a US product. ($76. kg.) The first thing I'm noticing is apathy has receded so much it's noticeable in just a week with just 2 tsp., and working up to 3 tsp. daily but can't use it in coffee. I've had this apathy for years and it was worse than any non-motor symptoms. I didn't feel like visiting people or talking to anyone for very long. I could spend the day in bed which is so unlike the normal me. Thanks so much for letting everyone know who has this.

Thank you, for sharing your experiences, I think I too have trouble with apathy and would be willing to give Mannitol a go. Unlike you I have a neurologist who thinks he knows it all and consequently has a negative attitude outside his own conventional experience.

gwendolinej
gwendolinej in reply to ccr69

If you are game 😅, you could print off and show your neurologist the research on the International Parkinson and Movement Disorder Society website and information on the current clinical trial from NIH US National Library of Medicine. These are what our neurologist sent us after he'd seen my husband's improvement. You could ask him if he knows that mannitol is used in major hospitals for brain injuries. I'm assuming it reduces inflammation.

How can these neurologists be so "smart arsed", when they know so little about the brain really.

jeffreyn
jeffreyn in reply to gwendolinej

In the event of stroke, mannitol is sometimes given in large amounts (via intravenous infusion) to prevent brain swelling.

gwendolinej
gwendolinej in reply to jeffreyn

Thank you

Mine does. She is incredibly knowledgeable in so many areas. I’m blessed

A question for the mannitol users - would you say mannitol works on predominately non motor symptoms? Or have you also noticed an effect on motor symptoms also. My husband is interested to try it , he is tremor dominant with only motor symptoms so far.

Despe and LAJ12345 I remember reading that your partners also use it, what if any changes have you noticed from using it?

gwendolinej
gwendolinej in reply to PEB69

Hi there, Have a look at the video on the Syncolein site. You'll get your answer.

Please keep us in the loop.

Please have a look at the videos made by Dr Mary Newport while she treated her husbands Alzheimer's disease. MCT is refined from Coconut Oil

youtube.com/watch?v=Dvh3Jhs...

I use MCT as one of the supplement add ons that has relieved me of brain fog and am now thinking about Mannitol as well. Is I don't have it for 2 days I notice my thinking is not what it was when I had a constant dose per day.

LAJ12345
LAJ12345 in reply to PEB69

He started using the syncolein well over a year ago but also other things at the same time like thiamine, plus we reduced his mirtazapine right down and the apathy did disappear. Also his face became more normal. He still had bad anxiety and Hardy’s daily essential nutrients seemed to fix that within 3 days of taking it.

Over lock down the mannitol ran out as my order didn’t arrive in time. The Australian source had run out and didn’t deliver to NZ either so he was off it about a month. In that time his anxiety has returned badly and he has got very clingy, OCD, forever worrying about keys etc. the order arrived about a week ago so he has been taking it since then but so far still anxious and pacing. Movement has suddenly got a lot worse. I am not sure if it is the effect of stopping the mannitol Or to do with lock down stopping him going to play bridge and having social contact with friends, plus having teenagers home all day Being generally untidy and thoughtless. Too many variables to tell.

I believe it helps with mental clarity - I found I wasn’t stumbling as much to find the right word. It also improved my sense of smell. Unfortunately however the gas is such a problem that I’ve stopped for a while.

I buy the 1kg bag from Blackburn, but I’ll give the syncoelin brand a go if they ship to Australia, see if it helps.

LAJ12345
LAJ12345 in reply to Astra7

It’s still gassy🤣

gwendolinej
gwendolinej in reply to LAJ12345

My husband takes Omeprazole for the gas.

gwendolinej
gwendolinej in reply to Astra7

My husband takes Omeprazole for the gas problem.

Smokeypurple
Smokeypurple in reply to Astra7

Once I shifted to taking it in the evening the gas was no longer an issue - for me or others...!

That's worth knowing. I hope others see this hint. It's certainly worth trying. Thank you.

Astra7
Astra7 in reply to Smokeypurple

I’ll give that a go!

Should have asked... when you say "at night", you obviously don't mean just before bed...after your evening meal? Do you take with coffee?

Well actually I do have it about half an hour before bed in a small glass of water at the same time as my magnesium supplement tablets.

Thanks for that 👍

I just took 1/16 of a teaspoon today to see. My main issue is fatigue. I did not lay down all day today and I'm just realizing that right now. Yeah! I will continue with it and see. I don't know if mine comes from China....I will have to check it out. Thanks for the post!

gwendolinej
gwendolinej in reply to NRyan

That’s great. I don’t think it matters if it’s out of China in the real sense. It’s just that we don’t know anything about it’s source and quality controls. If is working, then that’s a good start. The daily dose from the Israeli research says 1tbs, and no more. Our pharmacist checked it out for me and reinforced the fact that you shouldn’t take anymore, as it’s in fact detrimental. If less is working for you, that’s good.

Please keep us updated.

Gwendoline

As a Veterinarian I've used mannitol to treat HBC (hit by car) intracranial pressure cases and to treat acute glaucoma. I don't understand how it would effect PD but it's something to mention when I next see the neurologist. I still don't know whether I have PD. But I take Sinemet twice daily and Ropinerole once before bedtime.

gwendolinej
gwendolinej in reply to kaypeeoh

I guess if there's inflammation in the brain it could help. Let's face it, we know so little really about the brain. Ask a researcher that question and that's what they tell you. You wouldn't think so when you see the reactions mentioned here from some neurologists to patients wanting to try a vitamin or supplement.

If you saw my husband before and after mannitol, you'd see what I mean.

It will be interesting to see your neurologist's reaction. He could certainly look at the current trial being held. See U.S National Library of Medicine.

Here's a simple description that you'd understand better than me....mannitol appears to prevent or reduce the clumping of proteins in the brain, including

alpha -synuclein. It has the ability to cross the blood-brain barrier. Clumping proteins are a hallmark characteristic of Parkinson's Disease.

Let's know what your neurologist thinks.

The ' wired up' test should tell the Neuro pretty quickly if you are well advanced.

The tech will run wires to/from your arms and legs and run a series of conduction tests. It's

Painless.

Sotul meu are aceleasi simptome descrise de tine.Unde comanzi in Europa, cum se numeste exact produsul, ce cantitate ia pe zi ?

Thank you for sharing your story of hope. My mum was excited to hear it helped dizziness for your husband which she is finding unabating. She too has found neurologist prescribed drugs ineffective and also has no tremor. I have ordered the Sosa brand via a chocolate making company here in the UK. Over 500g for about 15pounds delivered. We have our fingers crossed for some respite

Well done. I look forward to hearing that it's worked for your mother. Please let us know.

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