Why would different brands of mannitol affect me differently?

[1LittleWillow]

I purchased bulk mannitol powder (BioFinest brand) from Amazon in October of 2018 after watching videos about the benefits of mannitol for PD. I learned about high-dose thiamine HCL at the same time and started taking it at the beginning of November 2018. I didn’t want to mix therapies, so I decided to wait on the mannitol. The B1 took a while to yield results, but within a few months the benefits were so dramatic that I kind of forgot about the mannitol. I was also a little afraid to try it because I have a really bad sensitivity to most artificial sweeteners (particularly sucralose/Splenda).

I finally decided to try mannitol in May (2020). The bag had been in my pantry since October of 2018 and was expired, but since it was unopened and double-bagged, I decided to use it. I took 1 teaspoon the first day, 2 teaspoons the next day, and a tablespoon daily after that. Within five days I started to regain my sense of smell and was sleeping much better. I was surprised at the improvements. I had actually hoped for some help with my tremors and bradykinesia (the only symptoms the B1 hasn’t ameliorated), but it didn’t affect those issues.

I ran out of mannitol at the end of July. I thought I still had more in the pantry, but the bag was empty. I tried to order more from Amazon, but the brand I had purchased was no longer available. I waited a week because I wasn’t sure what brand to choose, and then decided to try Mannitol Balance to see if it was better than what I had already tried. I had to wait a while for it to arrive, and by the time it did, my sense of smell was gone again, and I was suffering severe fatigue. I didn’t think the mannitol had impacted my energy levels in any way, but apparently it had. I took the Mannitol Balance twice, and my gut reacted as if I had ingested sucralose. It was really, really bad. I threw the rest of the bag away, got online and found the BioFinest website, and ordered two bags directly from them.

I began taking the BioFinest mannitol again on September 4th. Within about a week, my energy levels improved significantly (they’re now back to normal), but my sense of smell has still not returned to the almost-normal level that it was at when I was taking mannitol the first time. I still have had no intestinal issues with this brand.

I’ve ordered some Syncolein because now I want to see if I react differently to that brand (and yes, it does contain enzymes, so it’s not a 1:1 comparison).

I’m clueless when it comes to chemistry, so I’m wondering if anyone here can tell me if mannitol is mannitol is mannitol… if you know what I mean. My assumption is that if you market something as 100% mannitol powder, it would always be the same chemical composition as any other product marketed as 100% mannitol powder, but based on my reaction to the Mannitol Balance brand, that doesn’t seem to be the case.

[Despe]

My husband is using NuSci Mannitol. I believe that is what they used for the trials. A little expensive though.

[1LittleWillow in reply to Despe]

Thanks, Despe! I may try it just to get another comparison.

[Despe in reply to 1LittleWillow]

You are very welcome. I hope the change of Mannitol brand will make a difference.

[park_bear]

You are quite right - mannitol is a specific chemical compound and there is only one version. See the Wikipedia entry here for the chemical structure:

en.wikipedia.org/wiki/Mannitol

The radically different reaction you had to a particular brand certainly casts suspicion upon the purity of that brand. If you are so inclined it would be good to report your experience in a review for that product at Amazon.

[1LittleWillow in reply to park_bear]

I'm going to experiment with a few more brands and see what happens. If four out of five brands don't upset my intestines, then I would be inclined to believe that that one that does is the one that is sketchy.

I'm also trying to figure out why the first brand quickly gave me such a dramatic and unexpected improvement in my sense of smell, but after being off of it for a month and then restarting with a new bag, I haven't gotten the same result. The second batch has definitely helped with the fatigue though.

[pdpatient in reply to 1LittleWillow]

Little Willow, you are so right. I had the exact experience with Biofinest. I too had to go through several brands before realizing that Biofinest is the best and it's made in the USA. Almost everything else comes from China.

[1LittleWillow in reply to pdpatient]

Yes, agreed! I did a lot of research before ordering the BioFinest the first time.

[1LittleWillow in reply to 1LittleWillow]

FYI, that link doesn't seem to work.

"Oops. Looks like that page can't be found!"

[sharoncrayn in reply to park_bear]

Hi PB,

See my post to LW as to why you should revise your comment. The chemical structure is not the issue. It isn't that simple.

Sharon

[gwendolinej]

The syncolein brand mentions “gas” and has something in it to counter it. My husband takes the Sosa brand from Spain, which we sourced here in Australia. He was taking Aximax previously for his stomach, so we introduced it again. We had hoped he’d get his sense of taste back, but, after 10 months, it hasn’t happened.

He is mentally very well, as well as other improvements.

[1LittleWillow in reply to gwendolinej]

Correct. Syncolein contains alpha-galactosidase (an enzyme) in addition to mannitol. It's the active ingredient in Beano, and it helps prevent the gas that mannitol can cause. As I mentioned in my original post, the BioFinest brand of mannitol doesn't cause gas or intestinal pain for me, but the Mannitol Balance did, and I haven't tried the Syncolein yet.

[gwendolinej in reply to 1LittleWillow]

Of course we don't know whether the Sosa brand causes gas because I gave my husband the Aximax. There's one way to find out. I'm glad you raised it. Thank you.

[alaynedellow]

I swear by syncolein- has given me bk my sense of smell and kicked apathy into the distance.

[sharoncrayn]

Hi Willow,

All mannitol is NOT the same. It can vary because it depends on where it is sourced, what plant it comes from (such as mushrooms or in China via seaweed), and how it is processed/extracted (naturally vs. synthetically).

I have several members of my support groups who take either MannitolBalance (from France with a specific lot# which is highly unusual showing quality control) or Biofinest Mannitol (USA)...neither sourced from China according to their claims. I have no recollection of anyone mentioning gas or bloating from these brands as long as they don't ingest excessive amounts at one time and have a normal, healthy digestive system.

However, Syncolein's recommended dose of 1.5 tablespoons at one time might cause problems without their additional digestive enzyme. His recommendation actually make very little sense to me given 1) the short half life of mannitol and 2) the minimal percentage of mannitol that can cross the BBB. I prefer to recommend 4-8 times per day in smaller doses.

Pure mannitol shouldn't taste anything like sucralose (Splenda or chlorinated sugar) which indicates your sense of taste might be suspect as well as smell. It is about 100 times sweeter than sugar ounce for ounce!

In PD, mannitol is used because it offers some a-syn aggregation inhibition.

Good luck on finding a brand that works for you.

Sharon

[LAJ12345 in reply to sharoncrayn]

What do you think of putting it in a bottle of water and sipping throughout the day? Hubby was originally doing this along with some b2 and d-ribose and inositol then the last batch I thought we should try following the instructions and drinking it in a cup of coffee in the morning. I think it worked better dissolved but it might just be he is worse overall now.

[sharoncrayn in reply to LAJ12345]

Hi LAJ,

Very little of mannitol is metabolized at any one time, even by infusion.

My preferred protocol is Caffeine + mannitol to improve the permeability of the BBB implying use of both in reasonable amounts with each dose of L-Dopa.

Taking mannitol in large single amounts once a day without caffeine and L-Dopa (or c/l) is not ideal for PD patients from my perspective. So use the combination without overdosing the caffeine due to its salicylate content.

Caffeine "blends" contain 10% caffeine and 90% mannitol. They usually come with caffeine overdose warnings.

FYI, heroin is sometimes cut with caffeine and mannitol for obvious reasons, one of which is color but also improving BBB permeability.

Sharon

[1LittleWillow in reply to sharoncrayn]

What you said about caffeine is interesting. During the first couple of months that I was taking mannitol and getting such great results, I was often taking it with caffeinated organic black tea. Since the second bag arrived, I have been taking it with organic herbal teas. I’m going to switch back to black teas and try smaller doses throughout the day. Thanks for your input!

[park_bear in reply to sharoncrayn]

Have patients using your schedule of divided doses experienced bloating when using brands other than those you have suggested?

[sharoncrayn in reply to park_bear]

Good question PB.

I have no such reports, but that doesn't mean it hasn't occurred.

I am against "dumping" huge amounts of mannitol into the system at one time. I would avoid excessive amounts, either oral or by infusion, for a variety of reasons especially if you have a compromised BBB as some advanced PD patients do due to the possibility of cerebral edema.

The half life of oral mannitol is roughly 30 minutes (at most 90. but do not confuse oral with infusion which can last for 120+) so when someone ingests 1.5 tablespoons (roughly 19-20 grams) at one time it is gone from your system completely in 3-4 hours, but you have overloaded your digestive tract. Besides less than 10% crosses the BBB at any one time. It simply isn't an efficient protocol.

Therefore, the idea proposed by Syncolein's founder of a once a day dose of 1.5 tablespoons makes no sense to me...regardless of his use of a digestive enzyme to override the negative impact his mistaken protocol.

The analogy would be taking a full days dose of L-Dopa c/l at one time.

Sharon

[LAJ12345 in reply to sharoncrayn]

Thanks, interesting

[1LittleWillow in reply to sharoncrayn]

The BioFinest mannitol is definitely not as sweet as sugar or sucralose. I dislike sweets, so I thought 1 tbsp. in tea would be sickeningly sweet, but it's quite tolerable. I like your suggestion of dividing the dose! I do that with most of my supplements already.

[mauigirl18 in reply to sharoncrayn]

Hi Sharon,

I have the Mannitol Balance from France, packaged in the U.S. but the lot # on the bottom is illegible. Distribution in Phoenix AZ. Is this the same?

[sharoncrayn in reply to mauigirl18]

MB is a very good supplier. Dist. out of Pheonix, AZ

The lot# is printed on the front left of the bag along with expiration date. Best to use it in small amounts with each dose of MP+sinemet. Large amounts are not that beneficial.

Bio-Finest brand does not provide a lot/batch #. Nor does Nu-Sci.

sharon

[mauigirl18 in reply to sharoncrayn]

Thank you much! I’m not on sinemet yet and thought I’d try MB first in small doses throughout the day.

[sharoncrayn in reply to mauigirl18]

re:MP vs. LD...

" When compared to LD+DDCI, MP-Ld showed similar motor response with fewer dyskinesias and AEs, while MP-Hd (MP high dose) induced greater motor improvement at 90 and 180 minutes, longer ON duration, and fewer dyskinesias. MP-Hd induced less AEs than LD+DDCI and LD-DDCI. No differences in cardiovascular response were recorded." Cilia 2017/

MP HD (5-6%) = 17 mgs/kg = 170 mgs for 100 kg person = 255 for150 kg six times per day

when and if you go to sinemet generic. best not to take MP and sinemet together at the same time. bio availability of sinemet IR is negatively effected. However this issue has been debated.

Fava beans might be an alternative (contains aromatic amino acid decarboxylase inhibitor which MP does not). However, FB is much lower in L-dopa than MP.

sharon

[mauigirl18 in reply to sharoncrayn]

Can’t thank you enough Sharon!

[Astra7]

I can’t take mine anymore as the gas is such a problem for me. Shame as it really helped with mental clarity.

[jrg54321 in reply to Astra7]

Gas-x

[1LittleWillow in reply to Astra7]

You could try taking it with some inexpensive generic Beano. It's the same ingredient that's included in Syncolein.

[beehive23]

purity. buy bulk and test it at an independent lab. i used to do that with mucuna.........cheers.

[1LittleWillow in reply to beehive23]

I agree that that's probably the issue, but I don't have the time or resources to be able to get them tested. I will just have to do some experimenting on my own.

[Jo692]

Hi

On this subject I just looked at some to order and it said 99.1 % . Does this mean it gas .99 filler please or is this as good as one can get?

Thank you.

[beehive23]

buy in bulk make the company send a purity report, its only 100$ ish to get a purity test at a lab,,.....remember PD alchemy is alive and well..........mwaa hahahahah ...........cheers.

[gwendolinej]

Hi there,

My husband has been taking the Sosa brand, which I sourced here in Australia. It is imported from Spain. Like you, it worked within a few days. Unfortunately it did nothing for his sense is taste or smell..

If you find a brand where you get your sense of smell back, I’d appreciate your letting me know.

Regards

Gwendoline

[Ashe32 in reply to gwendolinej]

Hello Gwendoline, this is interesting - can l ask where you buy it in Australia and the changes you noticed? Thank you 😊

[gwendolinej in reply to Ashe32]

Sorry I’ve taken so long to get back to you, but I needed to check on availability of mannitol from my usual source. I usually get it from a wholesaler who imports it from Spain. It’s the Sosa brand. They will have a supply soon, but not much and probably won’t be reordering. They normally supply it to the diabetic trade for cooking diabetic foods. They did me a favour to supply me. I did buy some recently off eBay. No idea where it’s come from. Not much help, sorry.

Gwendoline

[gwendolinej in reply to Ashe32]

Oops forgot to mention the improvements...go into my post, all is explained 👍

[Gratitude60]

Hi 1LittleWillow, I was recently dx with Parkinson's and in my research found the study about Mannitol and watched the documentary of Daniel Vesely. Very interesting and made me hopful! As has been pointed out in this blog, when I searched to purchase mannitol, it is very hard to identify from where the various products are sourced and how "pure" they are. I found the Biofinest website which looks promising, but unfortunately, the product is unavailable at this time. Have you tried the MB Mannitol Balance sourced from France? If so, how did it stack up against the Biofinest? Thank you!

[1LittleWillow in reply to Gratitude60]

The MB brand from France gave me immediate and severe intestinal upset. I tried it a few times but absolutely couldn't tolerate it. I'm currently using Biofinest again and alternating with Syncolein.

[Gratitude60]

Thank you for the info. Biofinest still unavailable so I guess I'll just wait until it's back.

[Gratitude60]

By the way, what is Syncolein?

[pdpatient in reply to Gratitude60]

Another brand of Mannitol 😂 lol

[Gratitude60 in reply to pdpatient]

Got it; thanks!