Does anyone take B1 and Mannitol? - Cure Parkinson's

Cure Parkinson's

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Does anyone take B1 and Mannitol?

Dap1948 profile image
Dap1948

I’m not a medical person but it seems to me after reading round the actions of HDT and Mannitol that in some respects their beneficial physiological actions are similar. (Please don’t ask me to elaborate! I’ve just got that general impression.) My question- Does anyone take both and have their dosage of one needed to be reduced when adding the other? I’ve done very well on B1 and am just adding Mannitol because ... erm ... I’m greedy for even more improvement?!!

53 Replies

Nothing wrong with pursuing more improvement!

How many milligrams Of B -1 do you take?

Dap1948 profile image
Dap1948 in reply to 12stargate

Roughly 50mg of sublingual per day

BootsOn profile image
BootsOn in reply to Dap1948

Where do you buy the sublingual please? The supplier I bought from has been out of stock for months.

Dap1948 profile image
Dap1948 in reply to BootsOn

These each have some in stock...

ebay.com/itm/Superior-Sourc...

ubuy.co.it/en/product/LA6HV...

BootsOn profile image
BootsOn in reply to Dap1948

Thanks Dap! Did you look at the prices? The ubuy link is 24 Euros for 2 bottles which then more than doubles to 55 Euros with postage and customs. Ouch!

Dap1948 profile image
Dap1948 in reply to BootsOn

I haven’t used either website. The ones I use were out of stock. Because of the problem, I keep eighteen months supply in reserve. Hopefully supplements will become more available soon. I’m assuming they might have been affected by Covid...?

BootsOn profile image
BootsOn in reply to Dap1948

Which companies did you use, if you don't mind telling me? :)

Dap1948 profile image
Dap1948 in reply to BootsOn

Health monthly and evitamins.

BootsOn profile image
BootsOn in reply to Dap1948

Thanks, that's who I was using. Health Monthly went into liquidation having taken customer's money but not fulfilling the orders.

Dap1948 profile image
Dap1948 in reply to BootsOn

Gosh I didn’t know that!

BootsOn profile image
BootsOn in reply to Dap1948

If you've got five minutes, look up Health Monthly on TrustPilot - there are some very angry customers on there. I felt angry for them, as could so easily have been caught myself.

Dap1948 profile image
Dap1948 in reply to BootsOn

Oh gosh! Yes, I could have lost out too! Thanks for the information about them. Any luck with the other leads I found on google? They might not deliver here of course. Or might be ridiculously expensive...

Dap1948 profile image
Dap1948 in reply to BootsOn

healthyplanetshopping.com will deliver to U.K. for about £20. It depends how much you value the product and/or how desperate you are!

BootsOn profile image
BootsOn in reply to Dap1948

I've decided I'm not that desperate! When I bought from evitamins a year ago, 2 pots plus postage came to £12.41. healthyplanetshopping will only let me buy 1 pot so it's not worth the hit on the postage. The Italian supplier was £47 for 2 pots. Far too much! Thanks for your help!

Smittybear7 profile image
Smittybear7 in reply to Dap1948

How do you know how much Mannitol to take?

Dap1948 profile image
Dap1948 in reply to Smittybear7

I read it should be a total of one tablespoonful in tea or coffee drinks a day. I started on half a teaspoonful

Smittybear7 profile image
Smittybear7 in reply to Dap1948

Do you get gas from b1? I take 1000mg and am constipated. I think I read both b1 and mannitol cause gas. What relieves it?

Dap1948 profile image
Dap1948 in reply to Smittybear7

I’ve never had gas from B1 but I did from mannitol. I think it’s possible that the longer you use Mannitol, the less the problem is.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

Thanks

b-bobble profile image
b-bobble in reply to Dap1948

Dap what's your daily medicine along with B1?

Dap1948 profile image
Dap1948 in reply to b-bobble

A total of 200 mg of ldopa a day, taken as three doses (100 mg, 50 mg, and 50 mg) plus 1xAzilect

Smittybear7 profile image
Smittybear7 in reply to Dap1948

What are your symptoms?

Dap1948 profile image
Dap1948 in reply to Smittybear7

A slight tremor at times

Marimar70 profile image
Marimar70 in reply to Dap1948

May I ask. How long you been dx for Parkinsons. My mom seems to have had it probably for 15 years. Working on B1 HCL but not sure if I know it is working.

She has PD Dementia.

Lately her blood pressure has been up and she's not drinking lots of water. (Ughh)

so I don't know if I need to stop the B1 she's only at 1 G / day right now.

Dap1948 profile image
Dap1948 in reply to Marimar70

I was diagnosed eleven years ago. I’m not sure what to suggest. For me, when I started taking B1, my rigidity reduced which could be seen by friends because my face was more expressive and I could smile right up to my eyes, and I had more energy. You need to identify your mothers symptoms and monitor them. Does she have movement problems as well as the dementia?

Marimar70 profile image
Marimar70 in reply to Dap1948

Thanks for replying.. Yes I believe she has Lewy Bodies Dementia along motor problems/tremor/anxiety/dystonia in the feet mostly toes.

#1 Took her to Neurologist for the first treatment for Botox shots for the toes and 1 week later no luck.

#2 Need to get mom's anxiety in check see #1 . Her pain is her main issue and makes matters anxiety worse.

#3, Not drinking enough Water 💧

🙄

AmyLindy profile image
AmyLindy in reply to Dap1948

Me too and yes Mannitol- it is merely naturally occurring sweet product ; might as well do both (and keeps your bowel sounds active).

Be watchful of your potassium (and sodium) level - both may tend to push your potassium level down over time. It might be a good idea to get bloodwork before the start and repeat in a few months, and proactively consider supplementing potassium citrate if you're running low.

Dap1948 profile image
Dap1948 in reply to rescuema

I was surprised by your reply, so I searched google to find the connection between B1 and potassium and sodium. I found a reference to thiamine deficiency and reduced potassium and increased sodium, but I’m not taking thiamine because I’m deficient in it, and am not deficient in it so don’t see how it may apply. I’m willing to be educated...

rescuema profile image
rescuema in reply to Dap1948

Mannitol is osmotic diuretic so no explanation should be needed. As for thiamine, see the below video around the 6:40 mark for a quick explanation, and I've personally noticed the same with a high dose. With your <100mg sublingual B1, I doubt you'd need to worry but I was posting as a caution for others using mannitol in conjunction as well.

youtube.com/watch?v=-DxvSUE...

KERRINGTON profile image
KERRINGTON in reply to rescuema

Great video, thanks !

Dap1948 profile image
Dap1948 in reply to rescuema

Thanks for the video. Interesting. I take magnesium but perhaps an extra banana might be in order!

JayPwP profile image
JayPwP in reply to Dap1948

🍌🍌

Smittybear7 profile image
Smittybear7 in reply to rescuema

Video not working. Can you resend please?

rescuema profile image
rescuema in reply to Smittybear7

The link works for me? Try searching for "managing side effects of thiamine" by EONutrition on YouTube.

Smittybear7 profile image
Smittybear7 in reply to rescuema

Thanks

faridaro profile image
faridaro in reply to rescuema

Is potassium citrate better than potassium chloride ?

rescuema profile image
rescuema in reply to faridaro

No, not better for strictly raising K level but the citrate form has the benefit of alkalinizing the urine and binding oxalates/preventing kidney stones. You can use either when eating potassium-rich foods don't help address the low K.

faridaro profile image
faridaro in reply to rescuema

Thank you for clarification.

Hi...I've been on both for 2 + years, 1 tsp mannitol, currently 375 total B1. B1 helps, but so far not mannitol. I keep that one because of its great press.

Good morningI have been using mannitol AND B1 for about 8 months. I feel great. But I do not know if the huge improvements come from the thiamin or the mannitol. Unfortunately the clinicrowd site does not help with the answer. The only info I got from an interview with Pr Segal is that the mannitol process takes time: I have plenty of that!!

So I take both and enjoy life.

Starting Mannitol has coincided with my sleep becoming interrupted. It may not be the Mannitol but I’m suspecting it is because I feel a high when I take a herb tea with a teaspoon of Mannitol in it. So I’m giving it a break. I was sleeping so well and can’t risk losing that! Thank you each for your replies.

alaynedellow profile image
alaynedellow in reply to Dap1948

I take mine in coffee help cross bbb

Dap1948 profile image
Dap1948 in reply to alaynedellow

Coffee increases my tremor

I have taken mannitol as syncolein for 4+ years and B1 for 3+ years. I only take approx200mg B1 5 day a week ( weekends off stops od). I feel great am able to live fairly normal life. I found mannitol great for mood lifting.

Dap1948 profile image
Dap1948 in reply to alaynedellow

I wonder if what you find to be 'mood lifting' I find as too stimulating...

alaynedellow profile image
alaynedellow in reply to Dap1948

I was very apathetic before starting mannitol a real 'if i died least i get it over'. Know what u mean about stimulated- i refuse eve madopar as i find i can be so ultra awake at night- could write a book feeling. ( not sure if madopar but no eve meds n i sleep like a baby much to neuro's disbelif!)

Dap1948 profile image
Dap1948 in reply to alaynedellow

My sleep had been like a baby. (My last 50 mg madopar at 5pm) I wasn’t happy to find I was waking every hour through the night, after just a teaspoon of mannitol late morning.

alaynedellow profile image
alaynedellow in reply to Dap1948

I take CR so at 2am bing i awake. Takes suduko to settle my brain down.

My husband has been taking B1 (now 750mg per day) and mannitol 1 tbs in coffee in the morning for a couple of years now. Also hardys daily essential nutrients which helped him a lot plus a whole lot of other things .

Also currently Red light helmet, apolloneuro stress device, bright light therapy, fish oil, ubiquinol, krill oil , help seed oil, pantothine, lithium orotate low dose, glutathione, citicoline, uridine, inositol, b2, melatonin, mucuna and restore gold. Digestive enzymes. Bottled water with high Silica.

This week he got off the last minute trace of the sertraline, and started rhodiola rosea.

He takes 4 Madopar 62.5 and 1/4 Kemadrin morning and night. And the tiniest little trace of mirtazapine which is going out also in a few weeks time if all goes well!

He is doing ok at the moment despite us heading into winter which is usually when he crashes and his anxiety is fairly under control. He is still struggling with the use of his right hand which I believe is due to lack of using it and sitting too long with hunched up shoulders at the computer but I can not get him to do any therapy on it. Yet!

I’m taking both. B-1 first by a couple of months. I added Mannitol about 3 weeks ago. I right away noticed an improvement in my voice which had been deteriorating quite a bit. As a person who loves to sing, that was causing me grief . The B-1 also gave immediate improvement in posture and gait as well as mood. I’m also sleeping better.

Since my first Pfizer shot last month, my balance has gone downhill and I am more fatigued than previously. Add to that a change of brand in my meds and I’m currently struggling .

Curiously the positive changes seem to be still mostly intact, if that makes any sense. If I could get the balance and fatigue fixed, I’d be in pretty good shape 😀

Let me know how that goes. I'm considering starting Mannitol to thanks

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