Mannitol in UK

[jeeves19]

Hi. Anybody know where we can get this in the UK? As usual, it's hard to get anything here that people recommend! Wouldn't object to any opinions on this substance and experiences with it.

Cheers

[parkie13]

Can you get it from a different country, it's plentiful in u.s. how about Amazon us? I did not see much of a difference except constipation is better. I am still taking it.

[_Eureka]

hello jeeves, i bought mannitol from bio-apo in germany. they sell 5 kilos for 83,13 euros (bio-apo.de/product/mannitol... 1 kilo is around 24 euros. i think they also ship to the uk.

i ordered 1 kilo and took one tbsp./day with my coffee for three months or so. didn't have any effect really, so not sure i'm going to order more...

[Xenos in reply to _Eureka]

Sorry Eureka, but you do not seem to apply the protocol very strictly : one tablespoon doesn't make the deal. I bought a precise scale (to 1/10 th of a gram) and weights my 9 grams very sharply. It's way more than a tablespoon.

[_Eureka in reply to Xenos]

i weighed 10 grams (on my kitchen scale) the first time and it was a heaped tablespoon, so that's what i took. but you're right, i am not a precision fanatic... anyway, i thought jeeves' question was about where to buy and personal experience and not about precise instructions...

[jeeves19 in reply to _Eureka]

Thanks a lot

[Xenos]

Hi Jeeves,

Very easy through amazon.com, or BulkSupplement.com, among others. I tried both, but that was in the US and a friend brought them back to me. It's an artificial sweetener, and one of the most common. There should be other sources.

I am in the process of trying it, nearly 4 month now, scrupulously following the CliniCrowd recommendations, even though I have other ideas.

It gave me a lot of bloating and gaz, during the first 3 month. Nothing important other than having to forget my social life. And it's really really hard to play girls when you'r farting, especially the teenagers (just kidding ! ).

[jeeves19 in reply to Xenos]

Thank you. Hope all goes well😊

[Annieartist in reply to jeeves19]

Hi - did you source and buy mannitol in the UK? Did you use it? and if so has it made a big difference? thanks Annie

[jeeves19 in reply to Annieartist]

Get it from Blackburn Distributions. Like all this faddy stuff it’s hard to say if it makes a difference. Nothing revolutionary to be sure but I might have been worse without it! Who’s to say?

[Annieartist in reply to jeeves19]

Hard isnt it - you just have to keep trying everything - the alternative just isnt worth thinking of

Saw this today - Im a big fan of hers:

pd-school.teachable.com/p/b...

[park_bear in reply to Xenos]

I had to quit because of the bloating and gas. Congrats to you for hanging in! Any improvements?

[Xenos in reply to park_bear]

Your congratulations - although accepted - should go to my friends and relatives...

To my amazement, after 5 weeks - I keep a diary - bloating and gaz were nearly over.

If I were to take a bet I would say mannitol stopped the progression on the disease in its tracks, along with some minor improvements. Nothing sure though.

Do you have in english an equivalent of the expression "a Pascal's bet" ? That's what I am on.

[MichalKahan]

you may want to look at clinicrowd.info/

it includes a Parkinson's & Mannitol registry clinicrowd.info/pd-registry/

after you fill-out the registry you are directed to a detailed information page that includes suppliers that were recommended by other participant. I seem to remember a supplier in UK in that list. The page also included a dosage per weight table

[mymomhaspd]

I just started my mom on 1/4 teaspoon of mannitol. We will increase slowly - anyone seeing a any changes after taking mannitol for a few months ?

[Helen-cott]

I got it through Blackburn distributions.com. Haven't tried it yet. Where in uk are you?

[jeeves19 in reply to Helen-cott]

Hi Helen. Birmingham or near as damn it (Sutton Coldfield). Have you had any positive experiences with taking it out of interest?

[HealthSeeker7 in reply to Helen-cott]

This is where we got our Mannitol from too. Here's the link - blackburndistributions.com/...

They sell Mannitol in a wide range of sizes from 250g to 250kg (£17.40 to over £2000 at time of writing). The more you buy, the cheaper it is and, so far, delivery to the UK has been free with a brilliant delivery service that gives you a one-hour delivery slot notification.

My husband has just finished his first 500g bag (£19.10) of Mannitol and he felt enough benefit that we've now bought a 2kg bag (£37.50) .

The benefits are subtle, not as dramatic as when he started taking Mucuna (instead of all but 2 doses of pharmaceutical L-dopa), but he has been feeling especially well since adding a heaped teaspoon of Mannitol too, once or twice a day. He didn't suffer with gas and bloating at all.

On a few occasions it appears that a dose of Mannitol got him out of a more prolonged than usual 'off' period, which is not usually a problem since taking Mucuna, but it can happen if he doesn't stick to his vegan diet. We can say with certainty that taking the Mannitol coincided with him getting back 'on' on those few occasions. Whether the Mannitol was responsible for this or it was just a coincidence we don't know, but we'll keep taking notes.

Apologies in advance for the lengthy post that follows -

It is worth noting that my husband was diagnosed with PD nearly 13 years ago and he has been through some extremely difficult and painful times - early on when the medication he was first prescribed wasn't right, and when the 'right' medication eventually stopped working. But for the last year and a half, since taking Mucuna, and more recently Mannitol, he is almost always 'on' during waking hours, pain-free, active and happy.

Please don't anyone with PD, or caring for someone with PD give up hope of making things better for yourselves. Try to stay positive, do your own research, and know that most doctors and PD specialists only know what the pharmaceutical industry has taught them - i.e. to prescribe only pharmaceutical drugs as treatments, despite the harmful side effects. They are not trained nutritionists or alternative practitioners. You should have the right to try alternatives if you want to, preferably with their support (as our local doctor does), but at least without your doctor or specialist being patronising, dismissive, or trying to scare you (all of which we've experienced from other doctors and PD specialists).

Nature can provide us with solutions too that are less likely to harm us, and work with your body's own ability to heal itself. While PD has no known cure (yet), we believe it is just around the corner and likely to be found in Nature.

[glenandgerry in reply to HealthSeeker7]

This is very encouraging HealthSeeker7 My husband was diagnosed 12 years ago and I agree with you wholeheartedly about doing your own research and trying alternative medicine. We too purchased Mannitol from Blackburn Distributions but my husband has such a sensitive stomach that he couldn't tolerate the bloating, gas & tummy upset and unfortunately had to stop taking it. Your husband is very lucky that he didn't suffer with these unfortunate side effects. It was the same story with coconut oil as well

I am still trying different 'things' in the hope they will help my husband but he certainly wouldn't be able to cope with a vegan diet, although he has cut out sugar, and is trying very hard to cut out gluten, as well as eating more fresh veggies.

He is nowhere near as active as I would like him to be, mainly because his legs just don't seem to support his weight so he collapses down and 'walks like a monkey'! If I could just find something to help with that it would be a big problem solved......any ideas anyone?

[Helen-cott]

I haven't tried it yet but don't hold out much hope from what people say on here so may have wasted money!

[Xenos in reply to Helen-cott]

It's not much money for a lot of hope. You could.

Just my 2 cents.

[Helen-cott in reply to Xenos]

So true! Thanks for the reminder about positivity Xenos.

[dcwhit74482]

Hi Jeeves. Yes i also experience difficulties obtaining stuff which people recommend. Will watch your replies with interest. Thanks. Parkygal.