Vit B1 experimentation

[amar03]

Is there anyone on the forum who has experienced Vit B1 in the management of PD, alone or associated with conventional treatment?

I have been on Vit B1 per os for a week.

[M-o-ggy]

Hi there. Type B1 into the search. There have been quite a few posts

[Gcf51 in reply to M-o-ggy]

In searching HU, especially......... B1. HDT (High Dose Thiamine) , etc....

[Cardiology]

Hi Amar

Daphne Bryan’s book on B1 therapy is good. There’s also a Facebook group she set up and an Interview with her on No Silver Bullet.

I have been trying it for a few weeks (solgar capsules) and I think it’s helpful for some symptoms. There’s a protocol with advice on dosage etc. in Daphne’s book. I’m a PhD biochemist and have decided to persevere with B1 before asking neurologist about tweaking pharma meds.

[park_bear in reply to Cardiology]

It usually takes 4 months to attain full benefit.

[Cardiology in reply to park_bear]

Thanks, ParkBear for reminding me about the time lag. I think I’m definitely seeing some benefits after around 4 weeks (2@300mg then 2@500mg oral). I can’t get the sublingual in Uk so far.

[Cardiology]

On the possibility of conversion symptoms, perhaps you might be interested in an upcoming event on Functional Neuro disorders with Neurophsychiatrist and Psychoanalyst

psychoanalysis.org.uk/civic...

[amar03 in reply to Cardiology]

Hello Cardiology,

I am one week away from B1 at 500 Mg/D; I am also under sinemet 100 at the rate of 1Cp/d.

My problem is that the diagnosis is not clear to me: psychogenic parkinsonian synd or neurodegenerative prb. my MRI is normal as well as the routine biological check-up and there is a disagreement between neurologists and shrinks.

my story and the disorders that I present, as well as the bad answer to the sinemet 100 x 4/J pleads seems to me he pleads for the psy origin or the resultant of 45 years of enolism; all this poses a dilemma for me and for the moment, i am my own doctor at my own risk. for the moment I do daily physical activity, taking sinemet 100 at a very low dose and I rely mainly on B1 Therapy.

Thank you very much my friend.

[Dap1948]

This is my Facebook group facebook.com/groups/parkins...

The Facebook group has links to the book, the YouTube interview and hundreds of us taking B1. Join us!

[Sloboy in reply to Dap1948]

Hi Dap1048. I am Sloboy's wife and he takes Metformin. I cannot find the article on that drug for diabetes interfering with Vit. B1. Do you happen to know if told to ask for a different drug for your diabetes if you want to try the B1 high dose therapy? I have bought the book and do not find information on that in it. I thank you for any information. Or anyone else reading this. 😊

[Dap1948 in reply to Sloboy]

This came up in the Facebook group recently. The trouble is I can’t remember what was said. (Ive been down with Covid and haven’t been concentrating on the group as much as I usually do!) I’ve searched through the posts and can’t find it. I assume it must have been a comment under another post. You could join the group and post the question. We have quite a number of medical people in the group so hopefully they will be able to help you and this time I will sit up and take notice!

[Sloboy in reply to Dap1948]

thank you for your reply. He probably needs to take the HIgh dose B1 but thinks he doesn't need that much but doesn't have or feel any difference . He was only taking 500 mg twice a day so maybe he WILL get some results of some kind if I can get him to take the 2000 mg. divided per day. I see many are taking much more and that is something that I will have to see if nothing at 2000 mg, I will see if I can try more. Love to read the comments here and keeps me up at night!! :-)))

[Dap1948 in reply to Sloboy]

Improvements are often subtle at the start and slow to appear, so patience is needed. Some people find their sweet spot at quite a low dosage. It doesn’t have to be high. You do have to stay on a dose for 4-6 weeks and monitor carefully before going up to the next dosage and monitor again.. Good luck

[amar03 in reply to Dap1948]

I started the B1 at a rate of 250 mg 2 x d and I the 8th was in 8e day; it seems to me that it is giving the beginning of results: more morning shortness of breath, more strength overall and less anxiety... Is this a coincidence or not? Wait and see.

Thank you very much.

I am not yet registered on facebook for many reasons but that is another story. Thanks anyway Dap. moreover , i watched your interview on nobullsilver for the seconde time and i think you are fabulous .

[Dap1948 in reply to amar03]

I was having one of those days, then I read the ‘fabulous’ word!! You’ve made my day/week/month/year!! More strength and less anxiety definitely sounds hopeful. Be patient. Improvements trickle in gradually over months if you stay on the dose. Let me know how it goes (private message?)

[amar03 in reply to Dap1948]

I'm not throwing flowers at you! You are a light and I thank you very much Daph. You have the art and the way to give hope to people like me and it's a very big step forward for me. Thank you very much.

[slimweiss in reply to Dap1948]

Just finished your book!! So great. Loved all the individual stories. My hwp has been taking 500 mg for about a month though not consistently. No noticeable improvements yet. I bumped him up to 500 mg twice a day. I'm hoping that we see some changes over the next few months. Thank you for creating such a great resource.

[Berylhorsey1]

I have been on be one since 2017 and had PD since 2012.

I think the reaction I have had to the B1 is nothing short of amazing it has given me much more confidence in my balance and my walking is better and also some of the other symptoms of Parkinsons now if I meet somebody and say I have Parkinsons they don’t believe me! When I have decided to go on B1 I didn’t ask my doctor if it would do me any good as I know the answer That she would’ve given, but I asked if it would do me any harm apparently it is water soluble and you just excrete what you don’t need. I am now on 3000 mg of be one in three doses during the day and my life is completely turned around give it a go.

Having said that I am still on my medication as well as I don’t want to stop taking that and I feel I have a good balance good luck

[TL500 in reply to Berylhorsey1]

Do we measure improvement helps by b1 when off period? Thanks

[amar03 in reply to TL500]

Dr. Costantini raises the question and answers in the affirmative; however, it would be necessary to find the adequate dose.

[TL500 in reply to amar03]

How do you know when to stop at the right dose?

[amar03 in reply to TL500]

Being my own doctor, I count on my feelings and the substantial improvement of my symptoms, both autonomic and musculoskeletal, which can only be assessed correctly after 4 to 6 weeks, so the starting dose should only be revised. after the end of this deadline; as far as I am concerned, I started with 250 Mg X 2/J and after 8 days, my morning anxiety and shortness of breath went down a notch and on the 10th day, a sudden worsening of my condition was noted and I had to lower the dose by half thinking that would be related to an overdose; it has now been 5 days since i lowered the dose and my condition is gradually improving. Am I in the right? Wait and see.

[Berylhorsey1 in reply to TL500]

I’m sorry, I don’t get off periods

[TL500 in reply to Berylhorsey1]

Hi Berylhorsey1, thanks for your reply. So your improved symptoms are at on time which are better than taking meds alone?

[Berylhorsey1 in reply to TL500]

I actually don’t have “off” times. My improved symptoms are all the time

[TL500 in reply to Berylhorsey1]

That's great!

[TL500 in reply to Berylhorsey1]

So before b1 when you only had medication how were your symptoms?

What meds are you taking and how much?

[amar03 in reply to TL500]

As a reminder, I present a neurological synd on the ground of chronic anxiodepressive synd going back to adolescence, qualified by two shrinks as a conversive anxiodepressive synd and parkinsosonian synd by two neurologists who think in priority of a PD; my symptoms are: proximal tremor of the right upper limb with myoclonus at the start of an action that began in 2012 and episodic onset during a post-physical exertion hypoglycemia crisis, disappearing on sugaring, which became permanent from 2017 in a context of major domestic disorders, severe fatigue since the year 2000 and more recently rigidity.

A resting tremor was added A/C of 2021 then bilateralization to the two upper limbs. As a treatment, I take sin at a very low dose (100 mg/day), the high doses having not been conclusive (20% effective) and of course Vit B1 for 15 days.

[TablaPlayer]

Hi,I've been taking B vits for nearly 6 months...can't say much difference...what helps in my case is daily exercise...I do on average 8000 to 10000 steps per day...hope this helps

[Gcf51]

There's a lot of material on Low Blood Pressure and Parkinson's on the internet, but very little about heart racing, heart pounding, High Blood Pressure, etc. which can also be caused by PD. I mention because something consider while taking HDT whether overdosing (return of symptoms) or a side-effect.

[amar03 in reply to Gcf51]

I have experienced so far a few episodes of orthostatic hypotension, sometimes exrasystoles at the time of anxiety.

[amar03 in reply to Gcf51]

Low blood pressure can be a sign of PD but also a side effect of L-DOPA as well as hypertension . High-dose Vit B1 is also implicated in the genesis of hypertension.