Guys. I’ve taken B1 off and on for about 2 years I suppose, maybe longer. I’ve got to say that I never felt that I’ve ever really understood it and wondered if I’m missing something? I’ve tried high doses, low doses but don’t feel that it makes much of a difference to my world. But here’s where I’d like observations please: I feel okay most of the time because I take drugs. It seems simple to me. How can one honestly report that B1 is achieving much when the majority of ones symptom alleviation is based on pharmaceuticals? If a PWP told me that s/he only took B1 I’d be impressed (less so if you’re new to this club that nobody wants to be a part of 😊), but most use CL. So is it that many of you have not had symptom relief from drugs and B1 just adds a little something to the cocktail that gets you ‘over a hill’? Any tips/thoughts very welcome. I’d like to carry on with it but seem a bit lost with the lack of difference it makes 😕.
The B1 thing......: Guys. I’ve taken B1 off... - Cure Parkinson's
The B1 thing......
1. Maybe it helps levodopa absorption/use? Perhaps some people need this assistance whilst others do not?
2. Placebo?
I agree. It does nothing for me other than cause agitation.
Unless it allows the taker to reduce their prescription meds I question it’s effectiveness. That goes for most supplements really.
However there seems to be some people who really believe they benefit. Perhaps they had a deficiency that you don’t have?
Hi, I've read that agitation may be a side effect of a B1 overdose.
I would underline what Astra7 says -
“there seems to be some people who really believe they benefit. Perhaps they had a deficiency that you don’t have?”
Nothing to fret about. If it does not benefit you leave it alone.
... and a deep dive here - posted a few days ago
hormonesmatter.com/sibo-ibs...
Maybe you may still want to take it, when you understand the key role it plays in the bio-chemical reactions in the body 🌺
And look at the video, it is over an hour long. Talk about a ‘deep dive’ 🐣
Many thanks Casey
Jeeves baby, let me ask you this....have you noticed the disease progression or not progressing during those 2 years? And while you were taking pd drugs along with b1, did you experience dyskinesia much?
I don't get a real noticeable benefit from b1 either, but I am putting my faith in the part where the great Dr Costantini said it would slow or halt progression.
2000mg per day for me 4 to 7 days a week
Hey Bass. Nice to hear from you. Oh I’ve definitely progressed in the time I’ve taken it sadly. But oddly, still seem quite happy and enjoy the day😊
It’s a good point. PD progresses with a speed of rocket. In 6 years term it may turn one from absolutely healthy into a veg. Honestly I didn’t feel any benefit of B1 until I decided to quit a year after. Worsening of the symptoms was noticeable indeed.
c / l has little effect on non-motor symptoms of PD. IMO it makes them worse.
Here's a description SNM for comparison.
grg-bs.it/usr_files/eventi/...
GioCas did I ever tell you how much I appreciate you ?
The thread is primarily about querying the effectiveness of B1
Hi, Gio, I have to disagree with you on the effects of C / L on non-motor symptoms. It makes all the difference for me. I don't have tremor dominant Parkinson's what it does help is pain depression anxiety motivation, well, just about everything. Plus of course movement symptoms.
Enidah. I didn’t know that. I might redouble my focus as I too am non tremor. How much are you taking?
Hi! How you doing, bud? Been a while! Just wanted to say that I took B-1 for about a year, and it didn’t seem to benefit me, or help with symptoms at all! C/L helps me with resting tremor, stiffness etc. Hang in there, during this time of the 🦠 COVID-19 ! Doug
Hello Doug. Nice to hear from you. Hope your doggy is ok too. My Havanese has made such an impression in the area that three families we are acquainted with have bought one too 🐶
Wow, man! I have had the same experience with my Havanese!! People compliment me all the time. He has great markings, and is professionally groomed, every 6 weeks, so he looks good. Nobody, however, has told me that they bought a Havanese,’however. My dog’s bright, friendly personality, is infectious, so people are always wanting to talk to him etc. it’s good to hear from you, too!
They’re very unusual here Doug. More well known in US I believe? If I knew how to post a picture I would do mate!
Hi Jeeves,
My conclusion was that in my case it had a positive effect on mood to some degree, that HDT had a negative effect after a short while but 1500mg was the sweet spot. I feel it acts on me as an inhibitor but not very stable, hence very often the drug levels fluctuate and it is this fluctuation which turns everything 'tits up'. I rarely take it now because I'm on Opicapone, the new comt.inhib and that does not seem to agree with HDT, in me at least. Perhaps it helps your mood also? I wonder if it is only of help to folk who have efficient and stable uptake of drugs generally?
Keep swinging Pal!
My husband has been taking B1 since June last year about 2 gms a day. It’s difficult to say whether or not it is that particularly that helps as he also takes other supplements as well. He hasn’t changed C/L dose since dx 5 years ago and some days he takes less. Occasionally he forgets to take a dose of C/L during the day when he’s busy and doesn’t remember it until hours later.
Neuro added in Rasigiline last December which has helped but increased dyskinesia so now takes Amantadine to help with that.
He also has added in Terazozin Instead of Tamulosin which may have been helping.
Still quite active walks about 3 miles every day plus home exercises.
Reluctant to stop B1 as he’s doing well at the moment.
Tremor is not his main problem, more stiffness of movement.
Hiya! For me there was a noticeable improvement in symptoms after A few months on B1. Yes I was already on 200mg of ldopa a day but the B1 took away all my rigidity, returned my sense of smell and gave me more energy, which the ldopa alone hadn’t managed to do. Three years of taking B1 and I’m still on the same Ldopa dose and my symptoms, now just a slight tremor, haven’t increased and are easily zapped with the small dose of ldopa. Of course I’m going to see it as amazingly wonderful. However, it doesn’t seem to do it for everyone. I guess there are many different sorts of Parkinson’s and reasons why we have developed Parkinson’s. I’m sorry it hasn’t helped you. Mind you I will add that it was others who told me I was getting better. I didn’t see it myself! I do think it can take some time - a few months - on the right dose before improvements are seen.
Thank your for your post as it is quite helpful and encouraging to me in trying to care for my husband. Much obliged! Ruth
Hi there Ruth, have you looked at the B1 site on Facebook. It gives you so much information. I think Dr Constantini recommended taking B1 with Levadopa. Roy Prop, who runs that site and is a member here, has commented in this discussion, I notice.
My suggestion, as far as dosage goes, is start slowly. I was very impatient and upped the dose to 2000mg very quickly. It sent by husband's blood pressure through the ceiling. That, I might add, is very unusual. It's a problem he's had from the beginning....very high or very low. He's taking 250 mg at the moment. As soon as we get his new blood pressure medications settled, I'll try upping it again, slowly.
My husband is taking Mannitol and that's had an amazing effect on his mental wellbeing.
Good luck,
Gwendoline
What did your B1 dose end up being?
I don’t take the swallow version. In fact I couldn’t find the right dose with that. In 2017 I heard about a sublingual version which you put under your tongue until it dissolves and passes straight into the blood stream. Because you’re not losing a lot in the digestive process you don’t need as much. I began by taking one 100mg pill a day. Now, years on I have reduced that to four pills a week, i.e. I have three days when I don’t take a pill. I buy Superior Source microlingual B1. You can buy it from amazon.com but they won’t ship it to U.K. Here I buy it from healthmonthly.co.uk. healthmonthly.co.uk/superio...
They’re out of stock at the moment but it’ll come back in.
Sorry. I was responding to your first post. You’ve answered my question here
Daffers. You take the sublingual stuff don’t you? How much do you take daily and is this in isolation or do you take the other form as well? Glad you’re keeping well thanks for posting. 😊
He takes 100/25 Madopar 3 times a day and mostly adds in a half dose in the evening but not always, so last dose about 7pm. He has taken 4 full doses per day but now cut down by a half dose.
I think the B 1 has helped keep the dose at this level but it’s really hard to tell as you know. I can only go by how he is.
Think walking every day - mostly because of Lockdown and unable to go to the gym has helped and we look forward to going out as we re unable to do much else.
È vero, ognuno di noi ha il suo Parkinson ed ognuno di noi risponde ai farmaci in maniera diversa . Io posso solo dirti che, dall’applicazione di questo protocollo, ho tratto grossi benefici: gli sbalzi repentini di umore, la rabbia, le crisi di pianto, li ho risolti con la b1. Sempre con la b1, ho ripreso a camminare in maniera fluida (una gamba era più rigida), le mani lavorano senza difficoltà. Certo se ho giornate particolarmente stressanti nè i farmaci ne la b1 fanno miracoli. Un abbraccio
Whenever I read testimonials of people benefitting from B1, I bash myself for not finding the correct dose. I have not noticed any benefit from it so far (even a meagre ( 🐜 ) benefit)
We have proven (by stopping) that B1 greatly helps my husband's constipation problem.
I found it to be a temporary improvement. Now at the suggestion of my neurologist I regularly use Miralax. The doc also informed me that BPH drugs, like Doxazosin, cause constipation.
My husband has slowly worked up to 2500mg. He felt benefit even taking 500. Bowel regularity improved. He noticed he forgot to take a nap at about 1500.
He takes no Rx meds. We are just using B1 for him. Right now, his balance is better and his motivation has improved. He says his nighttime drooling has improved a little.
Trying to think what else I can report but nothing's coming up. He still has slurred speech too often, but no longer avoids talking like he did back there.
I think we upped the dose 500mg about every 2 weeks. Just yesterday, he went to the 2500 dose.
Hi Violet, my husband is taking Mannitol, which has had an amazing effect on him mentally . The Neupro patch, which he'd been on for years, had stopped working and he'd retired to his bed. After a few days on Mannitol, he was out of bed, talking, reading the newspaper, visiting friends ..his apathy gone. His dizziness and fogginess every morning also disappeared. His Parkinsons mask has almost gone.
Gwendoline
Thank you. Good to hear this progress! I happily read your reply several times. Take care, Violet
Just remembered that my husband's first improvement was that he no longer chocked swallowing pills. Can't remember at what dose that happened, but it was a huge relief.
HDT fixed al my non-motor symptoms. I take C/L only for tremor; I started C/L a year later later than B1. HDT really does help me.
Who the heck knows if it really does anything... but for that matter same goes for all the other vitamins/natural products as well... I'm of the mind that I'll take supplements on top of Levodopa, and if I'm rolling along and doing ok I'll continue taking them- even if it's just the placebo effect..lol.. I can't imagine that B1 and some other natural supplements, is a bad thing and makes PD worse... but probably some are not recommended. So... as a foundation I stick with the knowns-----> drugs (kind of necessary), exercise, meditation, rest, healthy diet, sunshine, etc...... and I'm always open to other natural ideas.
I am much the same. I have tried it in and off. Recently I had to stop as my tremors got much worse.
The problem is there is no constant correct dose of thiamine. It changes and varies in accordance with the current individual needs. You should chase it by "listening" to your body.. Sounds a bit strange, but this is it. For me B1 did miracles ..
1,5 years of intramuscualr injections. Slepes better, shits better and no Change in C/L dose.
I don't know if b1 helps me but I'm afraid to quit taking it in case it does. It does upset my stomach sometimes especially if I take it later in the day.
I began taking B1 within weeks of being diagnosed in May of 2018. It was the first supplement I took, but now I take so many supplements that it's impossible to attribute any particular benefit to B1. I believe my PD is progressing relatively slowly...but it IS progressing. My handwriting is worse, my gait feels slightly worse, and I have developed dystonia in my right foot when I walk. I still take it because it appears to do no harm and might actually help. I do not believe B1 stops disease progression and I feel bad for those trying to find the magical "right dose" to stop this disease. The miracle pill isn't here...yet.
B1 acts as jump start in cell mitochondria and keeps it up and running with helping in production of energy . Levodopa modulate the signals and regulate motor and non motor activities. B1 and Levodopa working together that is greater than the total power achieved by each working separately: Like team work at its best results in a synergy that can be very productive and better quality of life.
can only speak for myself but my disease progression has been almost nil since B1. I use 3 to 4 grams per day orally. I was certified with Parkinson by DatScan. I had soft voice, fainting, shuffling, tremor, constipation, etc. (I had 8 markers for the disease.) I consulted with the good Dr. C and within 6 weeks ALL markers had ceased except the right hand tremor and it was reduced to where friends ask me how I had "cured" my Parkinson's. I do 6-7 weeks on and 0ne off with the B1. I am sorry it does not seem to work for some but I wouldn't give up the B1. You would have to pry it out of my cold dead hand. The only medicine I use is the 25/100 Sinemet.
Hi. My husband has been on B1 since February last year and no other medication except probiotic clostridium butyricum, , milk thistle, pectasol C , melatonin. Kyolic garlic, tocotrienols, curcumin.
He takes 100 mg six days a week. From the top of my head B1 he had the following benefits:-
1. Balance improved
2. No choking on saliva or water
3. Better line discipline driving
4. More natural facial expressions vs frozen look.
Too much B1 made him drool.
Hope this helps
So you’re against the B1 regime? How then explain the many who it appears to work for?
Hi Jeeves! Been taking 500mg since forever. I felt it helped my fatigue when I started - that has not been a problem since. Stopping for a fortnight as of today just to see what happens! Best K
thiaminase producing bad bacteria can certainly cause b1 deficiency but you don’t “feed” and grow bad bacteria with b1 supplement. You grow.bad bacteria by eating high/bad carb/sugar diet. B1 efficacy has more to do with b1 transporters and metabolic deficiency need/state, a very important but one of many necessary cogwheels.
I was on drugs before I took the B1.Simonet Rotigotne and resagiline and they were controlling my symptoms to a degree once I started on the B1 protocol, 2000 mg per day, the effect was so amazing. Now this could be down to my brain wishing and hoping or to the B1 but to be honest who cares if you’re not on 2000 mg already or higher take a look at what other people are taking and see if it’s the dose adjustment that needs Upping
Thanks Sue. Nice post 🙏
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