Just to give an update. Mannitol is proving to be amazing for me still. After my initial day of huge improvememt I have plodded along feeling stronger and mentally sharper when 2 days ago I had a day of feeling very sharp mentally and the next day my body felt 'normal' again! My right hand is even more dexterous and my hands now wwork as a pair, r hand just automatically doing its thing and swing is automatic whereas just week ago i had to encourage movement. This big improvement is like last one following of day of improved mental ability.
Amazing stuff.
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alaynedellow
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I’ve been taking a table spoon with my morning coffee for the last 4 months and all I have is an over abundance of gas. I guess it works for some......... best wishes to those having positive results’
I have been using this for 10 months now. Certainly keeps me regular. You still need to do exercise with this though and eat really well - which means no fast carbs which I find sooo difficult. Have recently started taking Vitamin B1, though not sure what dose of that I need. Not sure whether the latter is helping.
Symptom wise before I was having terrible sleep, constipation, orthostatic hypertension and also some tremors.
This certainly resolved constipation. Tremors disappeared. But recently feel that my legs aren't always working as they should - it's ok at weekends and after exercise, but in the office my left leg feels weird.
Anyway now winter's beginning to end should be able to start exercising properly and can continue to hold off progression.
One thing I am now doing is seriously considering giving up alcohol except occasionally at weekends after reading this:
(to summarize any amount of alcohol disrupts sleep and the more you have the more days sleep are disrupted) Give the amount of sleep disruption inherent in Parkinson's anyway I don't feel I can risk adding alcohol to the mix as well.
Disclaimer - I haven't been diagnosed yet and don't want to be - in part because of denial. And in part because of increased insurance costs and having to declare this for any future job interviews etc.
I read that more than one glass of wine interferes with Azilect and if i have more than one glass i get the most thumping of headaches. Think alcohol is a no-no with most medication.
Mill brook, I’ve now been on 2T Mannitol powder/d for over 6 months. Not sure when the OLFACTORY BULB started back “ON” again, however. Note: I am also now following HDT 2GM/D per Roy Propsner /Easilly and others under direction of esteemed Dr Costantini (search more on this forum on HU if you are inclined to know more on High Dose Thiamin). It could have also had impact on this improvement. However, many report sense of smell as a hallmark of Mannitol “therapy”.
Thanks Amy. I have started my husband on 1 tsp mannitol and trying to find the right dose for B1.
The mannitol at 1 tbspoon upsets his stomach so I have ordered from synoclein. I have also ordered the probiotic clostridium butyricum made in Japan based on the finding that PD may be caused by imbalance in the gut moving up to the brain. Will let you know how it goes
You might be able to work around the stomach upset by mixing the full days supply of mannitol in a 500ml bottle of water, tea or sports drink and sip throughout the day instead of all at once. This is similar to a controlled release and will help to prevent a large dose of mannitol being released all at once and disturbing the digestive tract. Mannitol should taste like almost nothing in water as it has a slightly sweet taste.
Gio tried that particular probiotic because that is the only bacteria that is commercially available that we are aware of that is also a butyrate producing bacteria when combined with a prebiotic such as mannitol or xylitol. Butyrate is a very useful short chain fatty acid that PWPs are known to be deficient or insufficient in. Xylitol has shown the potential to increase the prevotella bacteria strain in mice, again well studied and noted to be deficient in PWPs.
Thank you for your suggestions Art. I diluted 1 tsp in 500 ml of water. My synoclein arrived today as did my Miyarisan clostridium butyricum, a probiotic from Japan. Will give my husband this instead of the 100 billion
probiotic he was on. If Mannitol can work so well, I have hopes that this new probiotic will achieve much.
I would like to mention something to you that I think is important regarding probiotics. In a study where they used probiotics on Alzheimer's disease patients where it actually helped to improve their symptoms in just 12 weeks, they used four very common strains, but they used strain dosing in the trillions in order to obtain the benefits that they did! Here is a link to that article so you can see the actual dosing and strains used . Most probiotics of better quality are going to have bacterial counts only in the low billions.
I think this study highlights something about probiotics that manufacturers never mention. That is that the dose can make all the difference in the world! My take away from this study is that although probiotics can have tremendous value in improving the human health condition, it is only going to work if you use the correct bacteria at a high enough dose. Based on that, I feel that probiotics alone are never going to be enough to normalize a seriously perturbed gut biome, while a fecal microbiome transplant may because of the amount and variety of bacteria inherent in those. I look at it as a similar difference between a prescription drug and a vitamin. The vitamin may be helpful, but in such small amounts may not be a match to go up against a prescription drug in terms of strength and effectiveness, but then I also have to add that HDT may be the exception! 😊😊😊
Thanks for the information. My husband was on the 100 billion probiotic from California gold and I just changed him to the Japanese probiotic clostridium butyricum(cb)9 small tablets give 270 mg of cb.
Digesting all this information am at a loss as to what to do. 😔
Getting himto take the B1, mannitol, probiotic, fish oil, magnesium caps, pumpkin seed oil is a feat because he says taking too many things. He has not been diagnosed and I do not want to say too much and get him depressed
Yes, I think you are being prudent to not overload your husband with too much information, because it can be simply overwhelming for both of you. Just continue to gather information that you deem useful or usable and save it until such time as it is needed or no longer needed.
You already have him taking some good things that can be helpful for most people and if he is a B-1 responder and eventually is diagnosed with PD will be in a good position. Not a lot of point going overboard to treat something that he may not even have. What you are doing is being proactive toward his health. One drawback to starting too many things at once, is that you don't know which items are actually helping and which are not. So keeping it light until a diagnosis is established seems appropriate! That will be easier for both of you, but you doing the research now will just put both of you in a better place and already prepared for what may come! You're on top of it already! Keep us updated!
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