Sorry I have been absent but as you all notice we tend to not post so much when it all good.
I will try to be to the point😆.
I have taken azilect since diagnosis 4 years ago today and added mannitol fairly soon. Mannitol i credit with giving me back my desire to beat this. My apathy was dispelled near instantly.
I wrote to Dr C and had advice for thiamine- unfortunately the big doses did not work for me but after a year of trials- detoxing and starting again i have settled on my perfect dose of 175mg a day. Dr C told me i had lost my parkinson face- who can't love a man that says that to you. I persevered with the thiamin as when on large doses i had huge energy and success followed by o/d so i knew it could work.
I introduced controlled release modopar in feb this year and it works in synergy (as Dr C recomends) with B1.
I signed off from my physio yesterday for 5 month break and he commented on how well i had done- what did i credit my amazing results too.
He tried many pull tests with me but- get this- he makes me stand on a foam block and not a step back no matter which way i am pushed.
I feel normal - only way to descibe it. I feel stronger and energised. My body is unlocked i dont feel all rigid and pokerlike.
So many things are normal i can forget what was wrong, cramps are gone, constipation gone, trigger finger gone, smell has returned, no falls for months, no random stabby pains, no stopping after 3 paces, moving off is mostly good, no need for cane when shopping.
I am running, huge walks with dog, completed hikingretreat in pyrennes, yoga classes, crochet and puzzles for mind hand co-ordination.
I feel very optimistic, i feel i undeestand my illness and my body i am my best doctor at judging when and where i medicate.
Long may it last.
And thanks again to everyone here for your advice and encouragement.
Written by
alaynedellow
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Another incredible success story to inspire us...thank you , much needed !
Now....what is your mannitol dose, is 175 mg B 1 in divided doses, and can you tell us what your body felt like on too little, and too much B1 ? Thanks
wonderful indeed . How old are you? I am 83 and diagnosed end of 2017;
I have started B1 (2X 500MG ADAY
and i go on with modopar &é(. As for thiamine I took 500mg a day for a month and now I I take 1gr a day . If it does not work I will go as far as 1500 mg a day .
This is a perfect recovery story of all thesymptoms that you mentioned and Thanksgiving seems a perfect time to announce it! I am so very happy for you and your story of recovery from the symptoms you described which were quite sustantial and this gives other people encouragement and further reason to consider B-1 and all that you are using! It must be an extraordinary feeling to have come back from so many symptoms to where you are today! You said:
' I feel normal - only way to descibe it. I feel stronger and energised. My body is unlocked i dont feel all rigid and pokerlike. '
' I persevered with the thiamin as when on large doses i had huge energy and success followed by o/d so i knew it could work. '
Perseverance is what it takes for some HDT testers to finally see such impressive improvements and your story makes that so crystal clear! There isn't a person with PD who wouldn't want what you have achieved and it took you a year to finally figure out the right dose of everything you take, that is perseverance!
This is nothing short of amazing when you consider all of the symptoms that you mentioned! This makes me feel so good for you, I can only imagine how good you must feel!
Thank you very much for posting your symptom recovery story! I hope that you have enough free time, now that you are so active again, to go into greater detail about all that you did to achieve this amazing recovery. I know that other forum members are going to want to hear every single detail about your regimen such as dosing of everything you are taking, timing of dosing, brands, what improvements you attribute to each thing you are taking,what your exact current exercise regimen is, what your physical stats are, length of time since diagnosis and anything else you can possibly think of that might be relevant to your complete symptom recovery.
What you have just described is like every PWP's dream come true and I hope you will be willing to share every detail possible!!! If and when you are able to post the information, would you allow me to cut and paste it to the thread that MBAnderson and myself started about what is working for forum members and especially forum members who do not post a lot or at all, as this will allow maximum viewing of your post to make sure as many members as possible will see your story, because it is a really great one! Sharing is caring! 😊👍👍👍😊
chartist Thanks for perfectly expressing my happiness as well at such a wonderful set of changes from taking B1!! I am also a success story, tho not quite to that extent -- I still have OFF times -- but I am so much better with the addition of B1 it is nothing short of amazing. I get to live as the person I am inside again.
The only aspect of your response that gave me pause was your use of the word "recovery." I know I haven't 'recovered' from PD because I still need all my meds (and then some). "Recovery" implies a permanent change in status that doesn't require continuous effort to sustain -- the way a person 'recovers' from an injury or a illness.
B1 certainly can restore function and reduce symptoms, sometimes dramatically, but the PD isn't gone. (I wish it were!)
What B1 can do for PwP is like what insulin does for people with diabetes, or what synthetic thyroid does for people with Hashimoto's Disease. Not recovery, but restoration of function. And I thank goodness and Dr. C every day for mine!
I know you knew all this long before I ever heard of B1, and I hope you don't think I'm being nit-piicky; it's just that claiming too much for B1 obscures or makes suspect what it can REALLY do, if somebody is patient and persistent enough.
I'd hate for a single person to miss out on what B1 might do for them because so much was claimed for it that it didn't sound real, and they passed it up..
And, too many doctors and researchers are only too eager to find a reason to dismiss B1's effects as impossible.
But of course I am beyond delighted to hear how B1 is truly helping yet another PwP get their life back to such a degree! Three Cheers all around!! And a standing O again for Dr. C!!
I made corrections to my original reply above to try to clarify what I actually meant to say. I never meant to imply that it was a cure because none of us is aware of any cure for PD. Sorry for the poor choice of word by using the word, "recovery" without properly clarifying exactly what I meant. It should be clearer now. I meant to say, recovery from all of the symptoms that "alaynedellow"had mentioned. I mean, being able to go from walking with a cane to now being able to run and take the dog for huge walks is very impressive to say the least!
Not wanting to nit pick but i feel i have recovered. To the extent that i can function and do tasks i had lost. I have not recovered from PD as i still have issues but i have learnt to be in control and manage my meds well. It is a recovery of me not a cure. No way am i cured i know i will die with PD.
Yes i thank the day i was introduced to Dr C and i truely wish him good health
I can absolutely agree about having RECOVERED MYSELF thanks to the B1!! Amen to that!
Your story set me to thinking. The rest of this post just poured out more or less on its own. Read it or skip it, as you wish. The only thing important to me is to have gotten it out! Thanks!!
For me, an OFF episode means I can't speak or blink or gesture. I can barely scrawl words in all caps if a marker is put in my had and a whiteboard is held underneath it. Behind unevenly drooping lids, my unfocused eyes, in a slack, vacant face make it easy to assume my awareness now wanders, permanently lost, in the dim and white-noise-filled chasm of catatonia. I've looked in the mirror. I've seen what I've seen. I hate it. I resent it. I fear it.
Because this, THIS, is what PD forces me to show to the world, when all my life I've routinely been recognized (in a good way) at crowded gatherings, and among travelers at airports, by my voice, my smile, or my laugh.
When, 11 years into my second 50 years, altho unwillingly retired from gainful work by PD, I employ my time and energy as the acquired Auntie to two sets of three children, and with, by privilege, a young professional couple who walk in and out of my house as 'my kids' to share quandaries, triumphs, baked goods, movie night, and LIFE. They are my torches among birthday candles.
When the only lasting argument from 13 years with my husband is which of us is luckier. Corny. True. He is my Sun.
This is the 'Me' that Parkinson's takes away from my chosen family, my friends, and a few lucky once-met strangers; from those whom Fate or Chance has destined me to challenge, help, empower, call out, contradict, perplex, comfort, and/or love; maybe from a person alone at a crossroads who happens to talk to a stranger and finds the way home.
The best, the worst, the most radiant, the most tragic, the most infuriating, the most cherished thing is that RIGHT NOW THIS 'ME' IS STILL ALIVE, RIGHT HERE, INSIDE ME ALL THE TIME. No matter how I look, or shake, or drool, or seize up, or sound., or... whatever is least like the REAL 'Me.'
These are what I see as the plain, factual, on-the-ground, everyday truths of what PD steals -- from the people who have PD and have to work so hard trying to also have a life (yes, us), and from all the people all over the world who miss out on what any one of us could bring to their life, and every life they touch in their turn.
For me, THIS is the change I believe B1 can make in the world, for every person it helps -- the world is better, even if B1 can't help every PwP who gives it a chance.
I too did not make progress with high dose of B1, I settled on 500mg 3 times a day taken with 600 mg mucuna. I tried 2gr of B1 and my anxiety went thru the roof, taking 1 grm then 500mg, was not right either, had anxiety in between times. I feel like I am settled and feeling good, along with a mild detox and Keto.
So glad to hear when people are progressing nicely, it's encouraging. I was never promised a cure, only an abatement of symptoms for as long as we possible. I want foremost to be healthy and do what ever I can.
I wish everyone well on their journey and rejoice with the successes.
Wow, it sounds like your body is really sensitive to B1, if it gives you anxiety like that. So sad you had that. Anxiety is awful!!
You do know, I hope, that sometimes sensitive people get great results with very SMALL daily doses of B1, clear down to 100 mg/day or even 25 mg/day. Considering the RDA for thiamine (B1) is about 1 mg/day, 'high-dose' can mean pretty much any amount above that.
It might be worth trying to find your right does by coming at it from the other direction -- try staring out very low (say 50 mg, half of a 100-mg tablet, once a day) for 3-4 weeks, and see how you feel. No change? Increase the dose by a small amount, like 25-50 mg,, and monitor for 3-4 more weeks.
Making videos of yourself as you increase the dose is an especially good idea with this strategy, because with small steps up, improvements can be so gradual and feel so 'normal' it's easy to miss noticing them.
I really hope you'll consider THINKING SMALL and maybe give B1 another chance. But either way I wish you all the best!
I took 500mg B1 for 2 years and was fine on it, because of the discussion about higher dosages, I decided to try it. I'm fine at 1500mg a day, any less than that, the anxiety tends to creep back in. Any over that sets the anxiety off bad. I have been playing with it, I feel fine now. Thanks for the info about low doses, it may come to that.
Hi there. Love your story. My husband has severe apathy. It's his major symptom. He was well for a few years on the Neupro patch, but it's no longer working.
We have ordered some Mannitol. Can you tell me what dose you are taking. The research suggests 1tablespoon daily? What's your experience. He has lost his sense of taste to a great degree, so we are hoping it will help in that area as well.
Mannitol from syncolein.com. Very reliable supplier. I take 1 measure in pot in morn coffee. About a tablespoon.
I have sense of snell n taste returned. Beautiful feeling early this year when sll bluebelles were in flower the scent was heady. Bought tears to my eyes to have sense return.
Syncolein is a form of the sugar alcohol mannitol that also contains the enzyme, alpha galactosidase, the active ingredient in Beano, an anti-gas agent. Many people report gas as a common side effect of mannitol supplementing and some find relief from that gas using Syncolein or taking something like Beano. Syncolein is obviously more convenient since both mannitol and alpha galactosidase are mixed together in the one supplement at the proper ratio. For those who are looking for a less expensive way to get alpha galactosidase can consider Beano taken with their mannitol or an even less expensive option by using the house brand (Equate) equivalent to Beano at Walmart . It is similar in price to Beano, but about twice as strong if I remember correctly and you get 100 capsules in the Walmart/Equate product, but only 30 tablets in the Beano product. Here are two links to Syncolein :
Will splitting the dose as a means to reduce the potential for gas still work or does the mannitol dose need to be taken all at once? If splitting the dose will still work, it may be a way to work around the gas issue associated with effective dosing of mannitol.
From the CliniCrowd forum that very question was asked to the initiators of the experiment. They did not get an answer. Some people take it splitting the dose, some with food (yogurt, applesauce...) some with liquids.
I tried to take the maximum dose (20g/day) split in 2 takes. No difference.
During the original experiment, mannitol was injected - once daily I guess ! - in the rats stomachs.
Yes, I found that splitting the dose with xylitol helped reduce the gas, but there was still gas, just less of it and if I stayed below 15 grams/day, almost never any gas. I wonder if splitting in three doses would be any better and still effective in terms of mannitol intake? I imagine if you are already taking it wouldn't be to hard to do a little experimenting to see if splitting the dose into three would be of any benefit?
I agree that it would be my preference not to have to take the alpha galactosidase with the mannitol.
Hi, so one should take Beano with mannitol? I have recently started taking the recommended 2 tablets of Beano in the morning. Is the mannitol included in the Beano not sufficient? Thanks for your postings.
I believe the alpha galactosidase is added to help prevent gas which some members and users of mannitol have reported. Some people have not mentioned gas as a problem with mannitol, so for them, plain mannitol may be fine.
To answer your question, there is no mannitol in Beano. They are two completely different products. The maker of Syncolein added the alpha galactosidase to Syncolein to help prevent gas, but some people use straight mannitol with nothing added. Straight mannitol is less expensive than Syncolein.
Hi, just wondering then are you crediting the thiamin or the modopar for this new lease on life? In my case, I experienced relief from many symptoms with the levo/carb and in the initial titration of drugs, pure Azilect did very little for me. I asked to be put back on the levo/carb. As an adjunct, I still take Azilect but for me it is about this possibly debunked hope that it slows progression. I may be incorrect but is modopar a slow release form of levodopa?
At any rate, I am truly very happy for you that you are feeling better! Enjoy yourself everyday!
Yes i take slow release or controlled release or here in france called long duration modopar. Take it whenever, with food after food before food. Has no bad effect with food makes life bit more manageable.
Yes i credit my success to b1 and modopar in synergy together. I had tried b1 alone but Dr C said add sinimet but as trouble getting it in france neuro here prescribed modopar
Thank you for sharing. This is wonderful information. I’ll be ordering mannitol tonight. I have been experimenting with B1 for the last year. Started with 2 grams and now go between 100-200 mg.
Bless God...I love to hear when other people have found success in beating PD symptoms. I do so well and hate to see those around me continuing to go downhill. So many people do not eat right or exercise. (Just content to take a pill.) I grow my own fava beans, make my L-dopa supplement, eat several kinds of nuts a day for thiamine and all their other diverse constituents, eat apples daily and other fruits and berries out of the freezer from our own gardens. Started an orchard last fall, and added 80 some apple trees we grew from seed this year. There is a pile of cardboard in the barn, and a mountain of mulch in the field (tree branches, etc from the road crews that were working nearby. ) Plenty of work to do and good food to eat. Music to play ...entertaining at several area nursing homes. God is good. Aunt Bean
Dreamy life w fresh produce- do the fava beans grow easily? And what recipe do you use to convert an average equivalent dosage into number of beans! Or do you freeze dry / grind / powder?
The fava grow in cool weather, in Tennessee, USA, I plant the end of February til the first 2 weeks in March. Aphids and spittlebugs are the biggest insect threat. They don't grow much after we start having 80 degree weather (farenheit) . I don't deal with conversion to pharmaceutical doses...people just need to find what works for them. Life is short and I would rather experiment on my own than have a physician practice on me. Using fava beansprouts is a way to use fava l-dope without gardening. Check out Parkinson'srecovery website for the fava blog that I write and a downloadable pamphlet on how to use fava beans to supplement l dope. Aunt. Bean
Thank you for sharing your success story. My mother is on high B1 dosage. How did you go about knowing how much mannitol you take. Did you have the support of a practitioner?
Also were you able to connect with Dr. C? I didn’t think he was working. Greatly appreciate any help.
My doctors do not agree with mannitol or B1 but the supplements agree with me. Doseage for mannitol on syncolein.com n I was talking to Dr C before he taken ill. Read the oages charterist has posted here
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