About to start B1 protocol

[Annieartist]

I got my suggested dose of B1 from Italy yesterday-awaiting the delivery of B1 today. Read all the Q&As on this forum. Any advice or suggestions before I start?

Thanks for all the info on the forum - I’m very excited to see the results

[Hidden]

Constipation will no longer be a problem in less than two weeks. Other symptoms, except tremor, over the next two months.

What dose?

What country is home?

[Annieartist in reply to Hidden]

I am Uk based. 59 years old. I take Madopar - a lowish dose. I was diagnosed in 2016 but started minor symptoms in 2013. Stiffness (better for Madopar but still present) and tremor ( not helped by Madopar) are my main symptoms. I do PD related exercise and Pilates both have helped reduce symptoms in a way Madopar has not.

Hoping B1 will really help.

This forum is amazing - learning more than I have about my condition and how to manage it than from any medical professional

Thanks

[Hidden in reply to Annieartist]

2 grams at 5 a.m.

2 grams at 5 p.m.

Join Facebook group "Parkinson's thiamine hcl"

Also see my HU profile

Cheers for B1

[Annieartist in reply to Hidden]

I’ve been told to take 1 gram a day in the mornings ( I assume that is just one a day) - didn’t say to take it in 2 doses

[Hidden in reply to Annieartist]

This is my understanding. At the time he suggested my dose it was the oral equivalent to injectable dose. As he received more online patients from outside Europe/Italy he began to get complaints. People reported side effects, like jitters or discomfort. He would then recommend they stop for one week and start again at half dose. Now I think he is starting Western online patients at low dose and then building up. I suspect these complainants have other causes.

[Annieartist in reply to Hidden]

Well I will start on 1 gram in the morning as soon as my B1 arrives -so tomorrow. Can build it up - will let you know how I go thanks

[Annieartist in reply to Annieartist]

One last question- how much likelihood that my tremor diminishes? It’s not terrible but effects my work

[Hidden in reply to Annieartist]

Tremor is resistant. The best hope, some reduction per my experience.

[20fatcats in reply to Hidden]

I have found mannitol helped with tremor and CBD then completely stopped it but I only had tremor in one hand. It wasnt teally bad but was starting to get worse so that's why I tried the mannitol.Good luck with the B1. Wish you well.

[Annieartist in reply to 20fatcats]

Can you tell me about Mannitol please

[fossygma in reply to 20fatcats]

Can you give me more details on the cbd, brand,dose,ect?

[Hidden in reply to Annieartist]

Annieartist,

If you have any doubt about the dose Dr. Costantini is recommending and when to take it, please email him to clarify the dosing. He has said , no thiamine question is too small.

Art

[fossygma in reply to Annieartist]

I never started because i never knew what time of the morning to take and then what time of the afternoon to take. Any suggestions?

[Hidden in reply to fossygma]

There are two options. Take first dose in the morning and second dose after lunch. Doc Costantini says take the lunch time dose if taking thiamine in evening cause sleep interference. I take my second dose 12 hours after first dose.

[jackhammersbro in reply to Hidden]

Hey Prop please tell me what taking B1 has done for you. Thanks

[Hidden in reply to jackhammersbro]

The positives: no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped.

[Annieartist in reply to Hidden]

Has your tremor stopped progressing?

[Hidden in reply to Annieartist]

I think yes.

[jackhammersbro in reply to Hidden]

that is awesome Prop.. How do you determine that the progression has stopped?

[Hidden in reply to jackhammersbro]

Less severe over time

[munchybunch]

Just go for it ! Best thing my husband ever did. Off the meds and on b1. I have a new man!!! Good luck!

[jackhammersbro in reply to munchybunch]

What changes occurred in your husband after starting on B1?

[jackhammersbro in reply to munchybunch]

Can you zero in on specifics as to what positive changes have occurred since starting on the B1

[Hidden]

Annieartist,

If you have any questions, you should be able to find most answers here :

healthunlocked.com/parkinso...

Good luck and keep us in the loop!

Art

[JerMan22]

The best advice I can give is to follow Dr C's advice as closely as possible. You might be tempted to cut a corner or two, but I've found that his experience with this is what can make or break it.

You are fairly early-on with your PD (compared to me at least), so you should react fairly well to treatment. From what I've seen here, you will likely see improvements up through the first 3 months, then level off. Some who have been on it for years report ongoing but slower improvements even then.

[Annieartist in reply to JerMan22]

Have to admit I'm very excited to start

[Rosakar]

Dear Annieartist,

How did you get your suggestion; would you please help me in this matter?

I left a message on doctor's website, but nobody returned my massage.

Thank you so much for your attention

Regards,

Rosa

[Getz in reply to Rosakar]

Hi I emailed him this morning and got a reply this afternoon. I used the email and translator from Easilly who replied to you earlier. Dr Constantino also advised me to start slow rather than to 2mg 2x daily. I weigh 70 kg so I have been taking 700mg but I really want to ramp it up. Shall wait and see as I've only just started.

[Rosakar in reply to Getz]

Thank you for your help.

[dcpambrose in reply to Getz]

Could you find any improvement after taking b1 hcl? Have you upped your dose from 700 mg and if so at what interval?

[Annieartist in reply to dcpambrose]

I am still hovering at 700 but thinking of upping it to 800 as my tremor is a little worse - I ALWAYS take first 500g but not so consistent with the extra ones

[Annieartist in reply to Rosakar]

I emailed the doctor at: [e-mail]

[Rosakar in reply to Annieartist]

Thank you so much, and hope you get the best result.

[Rosakar]

Thank you so much, for sure, I will send an email.

[nldr18]

Annieartist,

Good luck. We are all Lucky to have found Dr. constantini. I have been on the protocol for about two months. My handwriting has gotten larger which is meaningful because it was my first symptom. Increasing dose slowly, up to 1 1/2 g twice a day. Look forward to seeing your progress. Feel blessed to have found this site and be amongst fellow travelers on this journey.

Namaste 🙏🏻

Natasha

[Annieartist in reply to nldr18]

Likewise -its the first time I feel a great community spirit - I'm recommending it to everyone I know with Parkinsons

[Ramuu in reply to nldr18]

Namaste Natasha,

Which part of the world you are located ?? I am from Bangalore India. Where do you get B1 from ?? Previously Glaxo SmithKline used to manufacture B1, I understand from my Chemist that they have stopped, I am not getting the alternate source, please help if possible. I am bit touchy about buying on line from Amazon .com or .in, as these products don't require drug controllers approval

I am on Kapikachu ( Indian Raw Mucana from Kerala ( India ) ), Once action of Kapikachu diminishes, I have left hand and both legs tremor till I take the next dose of Kapikachu

Ramuu

[bobpamidi in reply to Ramuu]

Ramuu, you can buy Vitamin B1 (Thiamin Hcl) 500 mg Tablets Solgar brand from IHERB.COM. Reliable and good service. I buy some of my supplements regularly from Iherb.

[Ramuu in reply to bobpamidi]

Thank you very much

[interpreters]

I had a hard time swallowing the pills so I dissolve them in tap water

in a sherry glass(small) so as to get it in mostly in 1 shot.

[Hidden in reply to interpreters]

If you can order from Vitacost, they have 500 mg capsules in their house brand that are much easier to swallow than the pills. If it gets to a point where you have to fine tune your dose to something less than 500 mg increments, Swanson has the best price on 100 mg capsules that I have been able to find. All of this information can be found here :

healthunlocked.com/parkinso...

Good luck!

Art

[gaga1958]

I've been on B1 for 2 months and no improvement. I just increased dose so i'll see if that helps.

[Annieartist in reply to gaga1958]

Are you on a very low dose?

[gaga1958 in reply to Annieartist]

I started at 2,000 and am now at 3,000

[Hidden in reply to gaga1958]

Some people have needed 4,000 mg or more, but most on this forum have found their dose at 4,000 mg or less, mostly less.

Art

[Hidden]

Tremor remains but not as intense as once was