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.
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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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.
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.
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.
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 😂😂😂.
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) .😂
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.
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!
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