in reference to the title of my post, do you know of people who have had success in the B1 therapy mixing B1 HCL and the sublingual version??
A second query: is height and weight a factor in determining what dosage to take? I am 6’5” and approximately 17 stone.
My apologies if such a query already exists but I couldn’t locate it.
Thank you,
David.
why do you want to take two different forms of b1 at the same time?
The risk is to become very complicated with a therapy that is very simple if applied as from its origins by Dr C.
pubmed.ncbi.nlm.nih.gov/265...
pubmed.ncbi.nlm.nih.gov/239...
Thank you for your reply. I’m just trying to cover every possible angel I suppose. Some people respond better to one version, some people respond better to another. I guess I was thinking of getting the best of both worlds so to speak.
I take your point though about over complicating the process.
Thank you again,
David.
if you take both at the same time, how will you know which is working and how much to take of each?
It would be interesting to know what kind of changes you made after the results with vitamin b1.
Sometimes vitamin b1 changes the case of PwP by improving tiredness and balance, non-motor symptoms in general and you may think about decreasing in your medications. No, don't do it, don't change it, because in my opinion vitamin B1 and levodopa are synergistic and work well together and you don't change something that works,maybe.
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Disclaimer:
I am not a doctor and the contents of this message does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them. And so on.
Thank you for your reply. I realise that you are not a doctor but I have not had the best response from doctors. Or should I say pill dispensers. I have had some unusual symptoms and unless you fit their usual PD checklist- in my opinion they have not got a clue. That is my experience here in Ireland anyway.
As I said I am 6’5” tall. When I was diagnosed I walked with a bent over posture (my head was basically at my knees. It was horrendous to live this way. I spent 6 weeks in a FND specialist ward in London. I was treated very well but they couldn’t sort my posture out. I eventually sorted my posture issues out using meditation and visualisation techniques mainly from Dr Joe Dispenza.
What B1 is doing for me at the moment is unclear. I have an intermittent response to Sinemet. I was on it four years before it started doing anything. Then after it started doing something, I might not get the same response from the second or third dosage of the day. So I tried the sublingual form of B1 as well as the B1 that goes through the digestive system. Hence the sublingual introduction. But I definitely feel better being on B1. Balance is better like you said. Voice is better, my face doesn’t feel as restricted. I can cycle 10-20 kilometres. But I haven’t hit the same sweet spot I hit in January. Back then I was on B1 HCL (the swallowed version), B1 HCL ( sublingual version) and Benfotiamine - some combination of the three.
Ireland is a great country to live in if you don’t get sick.
Thank you again.
David.
hi Dubbhoy ,
I understand, it may feel a bit abandoned, but I see that you have a ability to react in causative way . Well done!👏🏻
Regarding vitamin B1, it seems that you are a good responder to the treatment. That's good!
All the forms of vitamin B1 you mentioned are oral forms, and there is not much difference between them. The HCL form is faster but lasts less in the blood, benfotiamine is more complex and therefore lasts longer, but essentially over the long term, they all do the same thing: a restorative effect, helping brain cells suffering from an energy perspective.
I have used all three of them, and I haven't found much difference between them, they all do their job, each in their appropriate dose.
The health system situation is difficult in all European countries, and having an incurable illness lowers the priority of care, but in my opinion, this shouldn't lead us to "fight" our doctors. "Fighting" is not an optimal way to take care of the problem. So, I wouldn't be so harsh towards the doctors who don't have tools to cure PD, and even if we are left to ourselves, we can make sure to be left to ourselves all together and meet here on CPHU.
I didn't understand well whether you use c/l, so I can't comment on the subject.
PD doesn't run fast and we have plenty of time to talk about it also with others if you want.
Greetings from Italy
Gioc, many thanks for your reply. Can I ask what you mean by C/L? You’re right about fighting comment. In Ireland you have to fight for everything though and it’s in our nature by default.
I had a virus in 2007. I had a tremor in my arm when I eventually recovered. The tremor eventually led to a PD diagnosis in 2011. A diagnosis that I’m not entirely convinced of to be honest.
David.
I get it, we've all been there.
Since when were you diagnosed with PD? And how? If I may ask?
Ah , sorry in 2011.
It's time for me to go to sleep!😴
No problem Gioc. Apologies for the delayed response. Sometimes it’s hard to respond, you know yourself. Yes, I was diagnosed in 2011. My marriage broke up at the same time. I had two young children at the time.
Ultimately I believe that the human body can recover from any condition. It’s just a matter of finding the correct modality to do so. But in saying that I think that what works for me may not be the same for someone else.
What happened Italy in the Euros yesterday? At least you got there, unlike us 😂😂😂.
Have a good Sunday. Chat soon.
David.
it certainly won't have been easy to face all this together, I'm very sorry.
from you:“Ultimately I believe that the human body can recover from any condition. It’s just a matter of finding the correct modality to do so” . I agree.
”What happened Italy in the Euros yesterday”
Italy? Emh! It's Switzerland which is a great team (irony) .😂
Greetings from Italy
Many times doctors don’t know what they’re talking about, and the rest of the time they are just following a script.
So, it’s a good thing you’re not a doctor, otherwise I wouldn’t listen to you.
No caveats required for those with real world experience.
”Many times doctors don’t know what they’re talking about, and the rest of the time they are just following a script.”
Maybe yes, but who actually knows what they are talking about this disease?
My ideal scene to aim for is that the patient and the doctor work “shoulder to shoulder” to defeat the disease as a team. The value of a team is equal to the sum of the value of the players, so we too must do our part.
I wouldn't be so harsh towards doctors and as I have already written, "fighting" is not the best way to take care of the problem.
Take care to your self, no one can do it better.
Greetings from Italy
Thanks for the wise words Gioc. I think I understand where you’re coming from.
I would LOVE to collaborate with doctors but I have been to four movement disorder specialists and all they want to do is prescribe drugs because that’s what they’ve been trained and are incentivized to do. They don’t want to listen to what I have to say or most patients have to say and are not interested in collaboration in my experience. No discussions about exercise, nutrition, emotional health, etc. All things that have shown to have huge impact on health status for anyone.
Additionally, I have been lied to multiple times about the side effects of drugs, the nature of the disease, and other critical things that should not be remotely confusing for anybody with training or experience. I know hundreds of people with PD, almost all of them taking PD drugs. So many of them are not sure why they’re taking the drugs, or what the improvements they’re supposed to be seeing are. Doctors in general and specifically movement disorder specialists need to step up their game in a major way to be in tune with what’s happening with their patients and with research in both traditional and nontraditional means.
That’s why I’m on this site. To learn about the real world experience of people living with his disease, like you, who have tried and tried again and are generous with their time to post their experiences.
Ciao 😎
I understand you, we've all been there (maybe you little more).
I've been using B1 and levodopa for 9 years now, it hasn't stopped the progression of the disease, but I think I've slowed it down a lot. So much so that at the last visit for my driving license they renewed it for two years, which is rare. (but it means nothing ).
Many with B1 experience an acute positive effect and tend to reduce the medicines, thus confusing the therapy, not considering that B1 and ldopa are synergistic.
the acute effect is interesting but it is the effects on motor and especially non-motor symptoms that last over time that count and are more difficult to observe if something is constantly changed.
Now you have come to the right place here on Cure Parkinson HU, here you will find colleagues and friends who can understand you and help each other.
Greetings from Italy
Gio
Some sublingual B1 tablets are HCL - hydrochloride! I think what you mean is have people had success mixing oral B1 and sublingual B1. Working out dosages becomes twice as complicated and there are absolutely no advantages! Have you read the book?
I have read the book yes. I also have the audiobook. I again take the point about over complicating the process. Back in January I actually had an amazing response from B1 and I was also taking benfothiamine. But I had a modification in my PD meds and I didn’t respond well. So I reset and I have been trying to get back there since
I should also point out that I am an extremely impatient person and I recognise that this is a flaw in my character.
Also Daphne, I recall Elliot Overton in one of his videos commenting that taking different forms of B1 is not an issue. This may have been a B1 deficiency video rather than a B1 for PD video.
Again, thank you for taking the time to respond to my question.
David.
Elliot Overton has some good advice, but I feel his Protocol for PD is way off.
I’m sure that taking different types of B1 isn’t an issue from the point of view of safety or contraindications. It does, however, complicate the trialling and the monitoring. Yes, you certainly need patience for the B1 therapy!
Hi David, a bit off topic but your comment made me think: I have been very impatient most of my life and I’m fairly certain that’s a big part of why I have PD.
I’ve spoken to a number of people that treat Parkinson’s patients who have told me many times that their patients are mostly “type A”. So I’ve done all I can to de-escalate my expectations for perfection and speed. Primarily by meditating every day for at least 45 minutes, but also just changing my mindset about life.
I know that’s not what you’re asking about but thought I would chime in.
hi Team,
Many thanks for your reply. You could be right about the impatience angle. But I reckon my PD came from one of two places. The first is a series of head injuries as a child including a fractured skull. The second was the virus I contracted in 2007. CMV virus they say but in my experience they were guessing.
I also enjoy meditating, can I ask you what type of meditation do you use?
Again, thank you for your response
David.
Hi David, I do mindfulness meditation as founded by Jon Kabat Zinn in the mindfulness based stress reduction program. Perhaps you are familiar with it but if not, a few searches will provide some great information. In summary, it’s just focused breathing and acknowledging that we all have lots of thoughts flying around in our heads and not trying to ignore those, but not to dwell on them. Historically I’ve done it for at least 20 minutes almost daily for at least five years but I’ve doubled down recently and I’m going at least 45 minutes a day to see how much more impact it has. Seems to make a noticeable difference in the first month.
Cheers from the land of chaotic democracy!😳
Thanks for your reply and the information provided. I have done a mindfulness practice previously. One thing I didn’t like about the one that I tried was when I did the body scan, if for example I noticed my tremor in my arm for example, I found it very hard to get past this as it was a reminder that I had Parkinson’s.
Maybe this would not happen in time but in the short term I found it very off putting. I usually do a guided meditation on you tube. I also have a Joe Dispenza guided meditation on my one drive app.
Meditation and visualisation techniques sorted my posture problems.
The land of chaotic democracy??? Do you mean the US? Have a good day and thank you again for your information.
David.
Dap1948: Just to confirm Superior Source B1 - Thiamine Mononitrate Sublingual is correct?
Being diagnosed now and starting 50mg M/W/F at 5'10" 230 lb Male.
Good morning Daphne,
I hope you’re keeping well. I wonder if you could clarify something for me, the sublingual B1 I use is Superior Source B1 (thiamine mononitrate). Is this the same one that you use? Also, have you heard of anyone using HCL in powdered format ? Thank you.
David.
I used to use superior source sublingual tablets but my dosage requirements reduced and reduced so much overtime that it became too difficult to use 100mg tablets. I changed to. EZmelts which are hydrochloride and 12.5 mg and are therefore easier to use for smaller doses. I haven’t heard of anyone using hydrochloride in powdered form.
sciencealert.com/parkinsons...
You might find this of interest if you hadn't seen it.
Thank you for the your reply and for the link to the article. Very interesting article.
Sourcing Sublingual Vit B1
Buying Vitamin B1 HCl
Vitamin B1 (Thiamine HCl) and Parkinson's
