Have you had success with B1?

[Dap1948]

I am currently researching everything about using B1 for Parkinson's in preparation for writing a book "Parkinson's and the B1 protocol" (working title!). New people are being diagnosed every day and are searching for ways to improve their lot. I just thought that if everything was layed out clearly in one place...

I wanted to end the book with as many success stories as I could get hold of. I have messaged nearly 30 members of HU who have mentioned using B1 but have only heard back from 6. Perhaps their message notification is switched off!

If B1 has helped you, would you be so kind as to message me (click on my icon which should open up my page, then click message) with your story - when you started using it, how much you take, what symptoms it has helped, whether you have changed the dose etc. Could you end with your name - eg Fred from Norway.

Any profits from the book will go into the Go Fund Me pot to go towards funding a vital double blind placebo controlled study, without which the scientific world will continue to ignore the protocol.

[GrandmaBug]

Good for you, Daphne. I am just starting my B1 journey, but I am also very early in my journey with PD. I'm not even on meds yet, and diet and exercise really took what mild symptoms I had to almost nothing. I'm hoping my B1 will keep me as stable as you for years to come. I'll also so message you on FB.

[alaynedellow]

Great idea Daphne. I will message you privately

[Dap1948 in reply to alaynedellow]

Great thanks 🤗

[Dap1948]

I'm interested in these people who have said in the past that they use B1 - Sunnysky , ParlePark , karlschmo , kgold , janers , Kellypeters , ion_ion , nldr18 , rescuema , Leslim , AmyLindy , Art_lover45 , jocelyng , dick1van , ForViolet

[ion_ion in reply to Dap1948]

I replied to your message. HDT helped me a lot.

[Dap1948 in reply to ion_ion]

Great!

[kevowpd]

I'd have thought if you were "researching everything" you'd not only be interested in the "success" stories.

[Dap1948 in reply to kevowpd]

I take your point, and am happy to receive all attempts. But I would want to know how long a person stayed at each level of dosage before they gave up on finding the correct dose. And I would want to know if, having found the correct dose, they took breaks when they notice their symptoms get worse. We are finding that people often need to stay for a couple of months on one level before they see improvements and regular holidays clear any overdosing and seems to jumpstart benefits again.

[WinnieThePoo in reply to Dap1948]

I appreciate greatly your positive attitude and integrity, and agree that it would be good to get a definitive answer to the B1 therapy question. But this thread is already highlighting some of the problems that have made the cause you are donating to,... struggle

If you're goal is a double blind trial then how would you organise that with respect to your reply to kevowpd?

A trial to demonstrate any effect on progression would need 2 years and 300 participants over at least half a dozen sites, and typically cost upwards of £5 million. Last I looked after more than 2 years the site had raised less than £10000

You have had at least as many "other" responses as unambiguous endorsements (maybe the endorsements have all come in by private message as requested)

Most of those enthusing about B1 take a basket of supplements, and as several here have noted, can't be sure what's doing what (this was a significant weakness in wrigas broccoli trial results too)

The other weakness B1 advocacy shares with the broccoli trial is to ignore dropouts. In the proper clinical trial you seek to sponsor, the level of those not pursuing the therapy would probably "prove" it doesn't work.

It is already available to those minded to try it and supported by a huge volume of advice from the likes of chartists page on this forum and Royprops Facebook page.

I think it will endure as a popular theme on this forum

[Dap1948 in reply to WinnieThePoo]

YOU MISUNDERSTAND! I’m only writing a book about the B1 protocol so that newbies can find the information in one place. I am certainly not doing a research study. That is way out of my capabilities!. If I make any profit I didn’t want to be accused of making money from the book so thought the fund raising for a study already begun on Go Fund Me seemed a place to put it.

[Gioc in reply to Dap1948]

LOL..

lost time !

Like talking to reporters, they already have their own prepackaged version dictated by their editors and as much as you try to explain the facts to them they never seem to understand.

They are afraid it might work, otherwise all this criticism of intentions cannot be explained.

[lafilli]

Hi, did you also ask on the Parkinson thiamine hcl Facebook group?

[Dap1948 in reply to lafilli]

Thanks. I’m going to do that soon. A lot of people on that are newbies though.

[janers]

Hi! I’m one of the people you mentioned you reached out to. I haven’t responded because although I feel like I’m doing well, I don’t know for sure if B1 is the reason! I take many supplements , eat a healthy diet, protect my sleeping time, exercise, engage in prayer and meditation etc. etc. so it’s difficult for me to say what is the success part of my story. I hope you understand. Best wishes, Julie

[Dap1948 in reply to janers]

I certainly understand. I’m glad you’re doing ok whatever has helped you.

[LAJ12345 in reply to janers]

Yes my husband is the same. Too many things to be sure which has helped.

[Dap1948 in reply to LAJ12345]

Can I ask, how did you work out the right dose for him if you weren’t trialing it without changing anything else? The only way we know the dose is right is if it improves symptoms, but if you were changing and adding other things...?

[LAJ12345 in reply to Dap1948]

Yes so that’s why I can’t say what helped. He was already started on restore gold and mannitol I think when I read about b1 and I didn’t want to stop those and I think he was already taking a range of other vitamins too.

I think I know when it is too strong though as he feels anxious and needs to urinate more often.

Since he has been feeling better lately I have increased it again back to 1g Per day. He was on about 750mg for the last year and and more than that made him anxious but now he can tolerate more again. I could increase it again slowly and see if he still is ok with it although he is doing so well at the moment I don’t want to change anything.

Initially he got up to 3g for quite a few months before I had to decrease it.

[janers]

And I take prescription medication too just to be thorough in my response!

[Hikoi in reply to janers]

If you started levadopa after B1 it is likely to be that which makes you feel well, along with a healthy lifestyle.

[Dap1948 in reply to Hikoi]

And if you didn’t?

[Hikoi in reply to Dap1948]

You started Levadopa after B1 Daph ?

[Hikoi in reply to Hikoi]

If you dont have personal experience then you need to have a way of analysing personal experience.

[Dap1948 in reply to Hikoi]

No I was already on a dosage of ldopa before I began B1 and which I haven’t changed in the four and a half years on B1

[Dap1948 in reply to Dap1948]

You are still misunderstanding. I am not DOING the research, I am QUOTING the research and there’s quite a lot that is relevant. But the main aim of the book is to provide a users handbook for those who wish to try the protocol. Don’t worry, I know you won’t be buying it! 😂🤣😂

[Hikoi in reply to Dap1948]

I’m sorry if it is me you are annoyed by. I think your book will be fascinating and needed as there appears much confusion on protocols for B1. By analysing personal experience I wasnt thinking of you doing the research but of critiquing the research and any anecdotal accounts you include so that you are getting not just what people want to believe is happening as I said below. At the very least I would want to know what stage in the disease people are.

[Dap1948 in reply to Hikoi]

Thank you for your interest in the project and your advice 😐

[Gioc in reply to Dap1948]

Me no Dap, six years ago I started b1 without ldopa by my doctor at the time of diagnosis, confirmed by positive dat-scan, with immediate benefit on motor symptoms. Only later did I go to Doctor Costantini who added the c / l to the b1. Doctor C explained to me the "restorative effect" of b1 on surviving nerve cells and the synergy with levodopa, (I enclose a drawing that the doctor made for that simplifying explanation suitable for a neophyte like me, where he pointed out that probably a part of the cells was suffering and how the b1 helped this part). My opinion is that b1 does what it has always done according to scientific texts, that is, it promotes the energy capacity of the surviving nerve cells and improving motor symptoms and especially non-motor symptoms such as fatigue, constipation and others. I'm updating my six year use success story and will send it to you privately asap.

Disegno

[Dap1948 in reply to Gioc]

Mmmmm I’m glad the diagram helped you!!I look forward to your story. Thanks

[Gioc in reply to Dap1948]

I'll explain it to you better in the story.

😂

[jocelyng]

Sorry that. I haven’t responded. I’m taking a B1 vacation for now, so I don’t feel it’s appropriate to contribute to your project.

[Dap1948 in reply to jocelyng]

A long vacation?! B1 holidays are good though not beyond two months Dr C found. After that the benefits gained tend to go.I’ll be on this project for 3-6 months, so if you feel you do later have something to contribute that would be great

[jocelyng]

Thanks.

[humph3]

Having been to the neurologist with freezing episodes, tremors and significant leg jerks when resting (I had previously been diagnosed with peripheral neuropathy) the neurologist said I did not have Parkinson’s but a neurological movement disorder and offered no treatment. As the symptoms were getting worse and I could see that they would be life changing I decided to investigate myself. I came across dr Constantini and his followers via health unlocked who recommended high dose vit B1. I was highly sceptical but having established that it unlikely to be dangerous to take a high dose I thought I would give it a go. I bought Solgar vit B1 from Amazon and started taking 4g (4000 mg) per day. Prior to taking my symptoms were occurring every day - within 2 weeks the freezing episodes stopped and tremors and jerks reduced significantly to be only a mild problem. I still did not believe taking a vitamin could have such a significant effect so I stopped taking the vitamin. After a few days the symptoms gradually returned and so I took the high dose daily for 14 months. During this period I had only very mild tremors and jerks. However the symptoms started to get worse after 14 months so after referring to the Constantini group I reduced the dose gradually to the point where I now take virtually no vitamin although my symptoms are appearing again - I am not sure where I go from here but I have achieved 2 years free of symptoms and as far as I am concerned this has been a miracle cure. I cannot believe this works for everyone but it has got to be worth giving it a try. Roger UK

[Dap1948 in reply to humph3]

Thanks for that. Do you think you took the dose too low? Over all my dropping lower by steps, I’m now on half the original dose.

[humph3 in reply to Dap1948]

Maybe - I will try juggling the dose if the symptoms get worse.

[Hikoi]

DaphneGood on you for undertaking this project. It will keep you busy.

May I add that things to consider if you want people to consider you credible. I know many people will believe on blind faith and hope but not all. I would want to know:

- Who diagnosed the pwp (I notice most of the miracle cures on line are self diagnosed). If a doctor are they meaning a natuopathic doctor, a chiropractic doctor, a movement disorder dr etc

- What medications were they taking b4 B1 and what are they taking now.

- How long have they been diagnosed

- What supplements had they tried and what were they on when B1 treatment began

- What supliments are they on now

[Dap1948 in reply to Hikoi]

Thank you for your thoughts.

[MissRita]

Unfortunately no matter how much I took I did not have any differences.

[humph3]

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