Hubby is taking lots of capsules so I do worry about the amount of fillers in it. I have taken to giving him some of his thiamine, d- ribose, mannitol and other b vitamins dissolved in water with a little unsweetened black currant juice which he sips on during the day. I have noticed a precipitate at the bottom and at first thought it wasn’t dissolving properly but have just realised it is all the fillers! So now he leaves the bottom few mL along with the fillers behind.
Thiamine is quite stable in an acidic solution but unstable in alkali so I am hoping it stays potent all day with the black currant juice.
The only downside is thiamine is bitter so some he still takes as capsules as he can’t take the bitterness of the full amount but it does reduce the amount of fillers. The ribose and mannitol are sweetish so disguise the flavour somewhat.
What do people think of this approach? Will thiamine and b vitamins still work the same or does it need to be taken in the capsule?
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LAJ12345
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Hi LAJ. Are you aware that there is no medication or supplements that have been shown to slow down or reverse the symptoms of Pd? The only way you can do that is through exercise. If you are interested then look at my website, reverseparkinsons.net and contact me. I am sure I would be able to help you.
Yes I am aware exercise is important and he does that too but I do think if you have gut issues or nutritional deficiencies they also need addressing along with the exercise. Perhaps some people do not need extra supplements but I think many do.
Hi LAJ. If you have Pd and you suffer with constipation and you find that some supplement rectifies that problem then use it! The problem I find is that we are told that this or that does this and that but with no proof whatsoever, I think we are wasting our time and money, but that is everybody's choice.
We so often see medications and supplements advertised and in the adverts we see words used like: CAN or POSSIBLY or MAYBE and words to the same effect. That is misleading at the very best. People with Pd are often desperate to do anything to get better and they fall for these misleading adverts and guess who gets all the benefit and who is just throwing money away?
MAOb inhibitors have been shown to slow down the progression of Pd, but nobody is able to use them unless their doctors prescribe them. That does not often happen! I wonder why?
I used an MAOb inhibitor for 8 years and I got better. But I don't know if i got better because of the MAOb inhibitor or the FAST WALKING or BOTH? If you do both and don't get better then that is the risk you take. Fast walking cannot harm you it can make you fitter and healthier, so what's wrong with that? The MAOb inhibitor can give you high blood pressure but that can be controlled as long as the Pd is being helped.
Plenty of things that have been developed by drug companies and assumed to be safe have turned out not to be. Really that gives me no reassurance at all.
Condor39, in a previous post, you stated that you "qualified in medicine 60 years ago ". If you are truly a man of science, then I'm sure that you never accepted statements like yours above (The drug companies take great care to make sure the fillers are inert...and... Several members of my family work for drug companies) as scientific proof of anything.
To be more specific with my question concerning your statement on fillers, "They are inert and have no effects, good or bad.", can you provide scientific proof? Can you cite research studies that indicate this?
My husband is also taking a number of supplements in response to deficiencies identified in various tests. I checked this same question with our nutritionist who advised as long as the pills/supplements are good quality this is not an issue. Obviously this comes down to price!
Lingfield233, can you tell us what tests your husband took to identify the deficiencies, what kind of doctor ordered the tests, if his insurance covered them, and in what country he lives? Thanks.
Hi HeartSong, we live in London (UK) and are doing these tests through a qualified nutritionist, not a medical doctor. The tests are not covered by any health insurance that I'm aware of. We are doing this in parallel to my husband's annual checks with his neurologist, who is not that interested in the whole possible gut microbiome/brain connection.
The tests are carried out by a company called Genova who operate in the UK and US. Our nutritionist sends the request to Genova for the tests we agree are needed (stools, blood, urine) and they send us a 'kit'. When the tests are done we send them back to Genova who then send the results to the nutritionist who can interpret them with us!
I have to say its been invaluable to find out what nutritional deficits my husband has and what is needed to improve them.
I have no objection to disclosure , but given the incredible safety record of fillers, which have been used for many, many years in millions and millions of tablets and capsules I think it is unnecessary.
Secondly it will not help your “filler anxiety” level, in fact may feed it and make it worse.
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Mannitol and B1: What’s going on?
Mom with PD
