Sorry - I've tried searching but there are so many posts with just a mention in passing its hard to wade through to the facts - I just wanted to get a summary of what the thinking is behind taking this supplement.
At present I'm on 3 x 100/25 Madopar pd and 1mg Rasagiline. I often don't take the full dose of Madopar as I can usually get by on 1 or 2 tablets pd depending on what I'm doing. My symptoms are a left side tremor and bradykinesia (stiffness) which causes a bit of a gait issue.. Madopar is great for the latter and helps somewhat with the former.
No constipation, no sleep issues. No dodgy compulsions!
Anyway I prefer to shake a bit and try to get by on a lesser dose to buy myself more room to increase in the future. Probably pointless but hey... who knows for sure?
Anyway I see B1 Thiamin coming up in threads. Should I consider it?
What I'm wishing for is anything that might slow the progression (aren't we all?). I can live with symptoms as they currently are...
So: to B1 or not to B1? (sorry, corny I know)
Thanks
Marc
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Doc Costantini consulted with me through email. He did not take into account my weight when he presented thiamin hci dose of 4g a day. I assume he based it on my current, at that time, medication/supplement choice.
He did not charge me a fee for his service. He is not selling supplements.
I have benefited greatly from the humanity and generosity of these humble doctors.
The improvement of my health was noticed by my dentist who commented on how well I was walking now after six months from last we had appointment. I report this because some of us miss the regression of symptoms until noticed by our friends and family. The person with Parkinson's may give up on this treatment too soon.
Go to my profile. Regarding B1, thiamin HCI, read my posts and replies. Click Follow. Learn of my experience over the last year. Discover my wellness as direct result of first choosing hi dose allithiamine then later thiamin HCI.
I have faith and a testimony that from here and the future I am going to be OK. Thanks to Doc Costantini who receives no monetary reward nor requires anything of me other than his happiness for my Parkinson progression stopped, symptoms under control.
Whomever is dissuaded from this treatment will only have the ravages and progression of Parkinson's the remainder of their life.
roy i'm looking at this, seriously, but i''d like to know why b1 speciically? i always thought that b vitamins had to be present together, they worked synergetically.
in the meantime.... i'm trying to switch to mucuna, and i learn it's banned in canada. even naturpathic doc has to import it.
in this article it says mucuna works, but only short term!
i have a reader's digest from1996, that says we not only have eiight dopamine transmitters, but they are not all in the brain (nigra?) some in the tailbone area, plus others!!!
Thanks Roy, I’m glad it’s helping. I couldn’t find an explanation of how or why it helps though...
Also seems that if you stop taking it the symptoms return, therefore it is only treating the symptoms - which is of course helpful and an alternative to conventional therapies...
Or am I missing something- is it possible that it halts the progression?
When you take time to wade through the mass of documents here you will discover that the mode of action is not understood, but more than that PD is more complicated than just a lack of dopamine. That's why dopamine replacement therapy doesn't provide a long term solution. Thiamine doesn't just treat the symptoms, it helps damaged neurons to become healthy . You can stop it for weeks without negative effects.
What I have learned (in my short journey from being initially v optimistic of a breakthrough when i was first dx 3 years ago to being sadly more cynical now) is that medical science seems to be at a loss and constantly clutching at straws.
One day you read of a promising study in fruit flies - the next an entirely different promising study in some completely unrelated area.
And this happens again and again until you wake up to the fact they’re all looking at different causes and effects at which point you realise there’s little joined up thinking.
The only commonality is that they’re all stage one/two and looking for funding to keep going...
No one knows how pd works or what causes it - sure AlphaSynuclein clumps are present but they’re not even certain if that’s a cause or effect. Is it gut/flora related or genetic - heavy metals - pesticides etc?
So it’s quite possible Thiamin is making a difference - I’m not rubbishing these claims at all. But I’d like to see some rationale
As a research scientist I also have doubts until I can understand how it works. But that will not be possible until we know what causes PD ... and from what I've read it's much more complicated than just a lack of dopamine.
And I can't explain my experience on the placebo effect. I was in a pretty bad state even after talking thiamine for 3weeks then one morning I woke up with no pain less stiffness and no fatigue. As a measure I couldn't put my socks on before. Now it's easy. This morning I played a round of golf and this afternoon I did gardening. Unthinkable before thiamine. I'm not on any other meds. Time will tell.
Hi Amy...from Ole Hoss aka Glen (from MPT). Glad to see you found this Web site. Constance (Cons10s) is also on this Site, along with Julia (JewelyJulia; and others. Really like this Site; although have stayed with MPT - for the folks who are still searching for answers, and comfort..........Glen
In the patients (over 2,500) that Dr. Costantini has treated, it appears that their disease has not progressed in terms of increased or worsening of symptoms as long as they remain on the protocol. They have less than a decade of experience at this point, so they can only speak to the efficacy of thiamine within that time frame.
there are could be substances/enzymes/hormones in human body yet to be discovered and may be then there would be a more clear understanding of thiamine effectiveness in PD treatment.
Thiamine is produced naturally in the gut, but PWPs have a disturbed microbiome that becomes deficient in the bacteria needed for this natural production. Prevotella bacteria is just one of the major families of bacteria that gets depleted as the disease progresses and this further causes a depletion of hydrogen sulfide (H2S) and butyrate, both of which when deficient can add to the disease progression or symptoms.
Another possible factor, since Dr. Costantini says that many of his patients show normal levels of thiamine in their plasma, is that the transport mechanism that moves thiamine from the gut to the brain may be defective or otherwise perturbed. The high dose thiamine, in theory, may temporarily flood the system with enough thiamine to compensate for a perturbed transport mechanism allowing just enough thiamine to reach the brain to improve symptoms and slow or halt disease progression.
Research in this area is still insufficient to draw positive conclusions, so at this point, for many PWPs, they are going forward with high dose thiamine usage based mainly on the anecdotal evidence, Dr. Costantini's clinical experience with over 2,500 patients treated with high dose thiamine and the known excellent safety profile of thiamine. Is this the best situation possible? No, but lacking major funding for the needed double blind placebo controlled studies, it is what it is.
For those who wish to wait for the double blind placebo controlled studies, they can and should. For those who prefer not to wait, they can try thiamine if they wish and see what they think. Compared to many prescription meds, thiamine's excellent safety profile is enviable. The fact is, nobody really knows the cause or causes of PD and nobody knows exactly everything that thiamine does to help with PD symptoms and I highly doubt that that information will come available in our lifetime.
I am interested in thiamine myself though need to research a bit more. I find personal anecdotes challenging in what is not said.
I dont think people here knowingly make claims that may be dubious. In the desire to have something work on PD the results can be skewed. So i want to know what other meds werechanged, any lifestyle changes etc.
Random example - Roy gives his experience of improved walking over last 6 months but i believe Roy started or increased his levadopa over this time, he doesnt have a note of when. That is not to say thiamine doesnt work, just that the results are not clear.
Four subjects were drug-naïve patients, while the other six patients were in treatment with dopaminergic drugs (one with dopamine agonists only, five with levodopa associated with other antiparkinsonian drugs); mean daily levodopa dose was 180.0 ± 233.6 mg. Basal levels of plasma thiamine were normal in all the patients.
... followed by
The clinical motor improvement was even higher during the second month of treatment, after the increase of the dosage of thiamine associated with the increase of levodopa for the patients already in treatment with this drug, or after the beginning of the treatment with levodopa for the patients naïve for this therapy. The mean daily levodopa dose after two months was 515.0 ± 228.6 mg.
so as well as Thiamine the group also had their levodopa more than doubled. That has to be a part of the reported decrease in the UPDS scores.
The individual comments on improvements after taking Thiamine (I have my own ) are supportive not conclusive as we all likely have other factors that may have contributed. I am going to carry on taking Thiamine as it does no harm and may be doing some good. I am wary of recommending it as it may lead to disappointment. This site has done a pretty good job of making all this clear.
Hi Marc. Two days ago "easilly" put up a post with 30 questions frequently asked of doc Constantini and his answers to them. You may find that interesting. I think the headline started with the docs name so try putting that in the search box. Or go look up easillys profile. All the best cc 🤗
I started my husband on B1 a week before his 6 month check up with his neurologist, who said to go ahead and try it for 6 months if we wanted to, he was a bit skeptical. So since the end of Nover 2016, he has been on 2 g (1g in am and lunchtime).
We did not consult with Dr. Constantini. I just read his website seeing that 2 g (4 x 500 mg pills) is a typical amount to start with. I adjusted it a little sometimes dropping to 1 1/2 g if I saw a negative reaction, but he is back to 2 g.
My observations of the past roughly 2 months:
1) less complaints about numbness in arms and hands;
2) no more masked face look;
3) energy level increased.
I do give him mannitol when I can remember, but it is not every day. He also boxes 2× a week and golfs once a week. The B1 is the one thing he is doing differently, so I believe it is hrlping.
Even if it were a placebo, he feels and looks good, so I would still give it to him. Be sure to get the water soluable, not the fat soluable, as I read the fat soluable can build up in your system.
I am grateful to this site because I would never had known about HDT. It is definitely w orth trying.
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) are supportive not conclusive as we all likely have other factors that may have contributed. I am going to carry on taking Thiamine as it does no harm and may be doing some good. I am wary of recommending it as it may lead to disappointment. This site has done a pretty good job of making all this clear.
B1 dosage warning
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Low dose B1 therapy
Does anyone have an opinion on the use of Vitamin B1 for treating PD?
Using B1 therapy
