Taking a break from HD B1: I’ve been taking... - Cure Parkinson's

Cure Parkinson's

25,539 members26,859 posts

Taking a break from HD B1

jocelyng profile image
42 Replies

I’ve been taking 2 grams of B1 (Dr. Costantini’s protocol) for a few years now. I was looking for the FB Group to get information about how best to take a break, but it doesn’t seem to exist anymore? I couldn’t find the info on the official website. Does anyone have the details on how to taper off, how long I should be off, etc.?

Thanks.

Written by
jocelyng profile image
jocelyng
To view profiles and participate in discussions please or .
42 Replies
Boscoejean profile image
Boscoejean

facebook.com/groups/parkins...

jocelyng profile image
jocelyng in reply to Boscoejean

Thanks. This is Daphne’s group, which is different. There was a separate group with a controversial bearded guy as the moderator. That’s where I initially learned about high dose therapy.

Gcf51 profile image
Gcf51 in reply to jocelyng

There are a lot of people having success with her protocol. It's a continuation of Dr. Costantini’s protocol and approved by Dr. Costantini’s staff.

jocelyng profile image
jocelyng in reply to Gcf51

Yes, but I have five bottles of the Vitacost B1 that I need to work through first.

Windermere1 profile image
Windermere1 in reply to jocelyng

Read the book. It covers b1HCL and sublingual and injection. Check out the Parkinson’s b1 therapy website and the fb group and utube videos and interviews

jocelyng profile image
jocelyng in reply to Windermere1

That’s not what I’m taking.

Windermere1 profile image
Windermere1 in reply to jocelyng

My understanding if correct is you have a supply of vitacost b1 to use up. This I believe from the vitacost website is b1HCL which is correct for Daphnes b1 protocol. Let me know if I’m wrong.

jocelyng profile image
jocelyng in reply to Windermere1

Yes, but it’s a high dose and not a low-dose.

Springbreak profile image
Springbreak in reply to Windermere1

hello are you supposed to have b1 hydrochloride every. Mine is also from vitacost

Windermere1 profile image
Windermere1 in reply to Springbreak

oral b1 must be HCL whereas b1 sublingual/microlingual is mononitrate. Check your labels.

Springbreak profile image
Springbreak in reply to Windermere1

So how is it taken ? The oral HCL everyday ??

Windermere1 profile image
Windermere1 in reply to Springbreak

I could jut say swallow it but that’s not the answer you need The b1 protocol is not simple and can be challenging but well worth the time because the results can be making. People have success at less than 100mg daily Oral but as high as 4000mg daily with a few. You need to joint the Parkinson’s b1 therapy,fb group and red daphne Bryan’s book from Amazon before you,consider starting the road to success.

Annieartist profile image
Annieartist in reply to jocelyng

Roy’s group?

Oneworld23 profile image
Oneworld23 in reply to Annieartist

No not Roy's group

jocelyng profile image
jocelyng in reply to Annieartist

Yes! What happened to that group.

Gcf51 profile image
Gcf51

She is using micro-lingual, but indorses HCL in book and on Facebook.

jocelyng profile image
jocelyng in reply to Gcf51

yes. Thanks.

Oneworld23 profile image
Oneworld23

Are you a member of this group? It's Daphne's. Ask the question there

facebook.com/groups/5121199...

jocelyng profile image
jocelyng in reply to Oneworld23

I am. I asked but haven’t gotten a response.

Oneworld23 profile image
Oneworld23 in reply to jocelyng

In the past my brother W/P just stops them for a break and has started at a lower dose

Gcf51 profile image
Gcf51

It's not about Tapering Off, you are supposed to take breaks, for me I do better when I find a lower sweet-spot....

jocelyng profile image
jocelyng in reply to Gcf51

I assumed that I would taper off to take the break (rather than cold turkey)? How long is the break supposed to be? How do I start back up again?

Gcf51 profile image
Gcf51 in reply to jocelyng

The only side effect of a break is "return of symptoms". I don't have a set break length. I break until return of symptoms and try a smaller lower dose.

jocelyng profile image
jocelyng in reply to Gcf51

Do you stop cold turkey?

Gcf51 profile image
Gcf51 in reply to jocelyng

If you mean none doing break, YES.

Gcf51 profile image
Gcf51 in reply to Gcf51

Continue with Mag, B-Complex and any other supplements. That is unless you think a supplement is causing a problem.

Gcf51 profile image
Gcf51 in reply to Gcf51

Oops!!! Edited B-complex (not B1). It is important that you take a B-Complex in-between doses of C/L because of the interaction of B6 with Carbidopa. Preferably P5P.

Oneworld23 profile image
Oneworld23 in reply to jocelyng

Yes, take a break of two weeks but keep taking the Magnesium and the B-Complex, then start again at a lower dose

Gcf51 profile image
Gcf51 in reply to Oneworld23

2 weeks doesn't work for me (on breaks of B1 at a sweet-spot) because I start having "Return of Symptoms" in less than 6 days. For me reducing dose by taking just once a week would not work.

If break is due to OD, take 2 weeks or longer to give B1 time to clear your system.

Windermere1 profile image
Windermere1 in reply to jocelyng

Following the b1 protocol in daphnes book says. When you experience OD symptoms take a 2 week break ( no tapering off needed). If the symptoms were OD they will subside within the 2 weeks and you can start again on a lower dose. If they DO NOT subside then it was not a b1 OD but quite likely to be the advancement of pd.

jocelyng profile image
jocelyng in reply to Windermere1

Thanks. Just to reiterate, I’m not on the low-dose protocol. I’m not ODing. I just wanted information about taking a break, which I recall was recommended.

Windermere1 profile image
Windermere1 in reply to jocelyng

Still not sure I understand your question. If you are OD you don’t need to take a b1 break at all. Eventually after a year or more at your sweet spot you may find you need to reduce your b1 dose. Eg after 2 years of success I now take less b1 than when I started and I know Daphne takes much less than when she started. We are all different and react differently. Best wishes

jocelyng profile image
jocelyng in reply to Windermere1

I assume you mean that I don’t need to take a break if I’m *not* ODing? Just to reiterate, I’m not a low-dose therapy. I recall with HDT that a break was recommended…

Windermere1 profile image
Windermere1 in reply to jocelyng

HDT. does not require a break but if you want to take one go ahead.

Gcf51 profile image
Gcf51 in reply to Windermere1

If I recalled right, Dr. Costantini indicated take breaks.

Once the patient is stabilized, after three or six months, we usually suggest short breaks of one to two weeks without thiamine. highdosethiamine.org/freque...

My opinion not just one, but forever.

LagLag37 profile image
LagLag37 in reply to jocelyng

I think OD means Oral Dose.

jocelyng profile image
jocelyng in reply to LagLag37

🤦‍♀️

Gcf51 profile image
Gcf51 in reply to jocelyng

I want to say   Dap1948 's protocol is not just low dose sublingual.

And, my sweet-spot has gone from 1400mg to 925mg with time giving me better results.

Gcf51 profile image
Gcf51

Results keep getting better with time.... I keep trying a lower dose. I seem to have better results at the lower sweet spots. healthunlocked.com/cure-par...

I am currently on Day 2 of a break, my optimum has returned, I plan a couple of more days and plan to restart at a lower dose.

ForViolet profile image
ForViolet

I've found some answers regarding taking a break here:

healthunlocked.com/cure-par...

jocelyng profile image
jocelyng in reply to ForViolet

Thanks!

ForViolet profile image
ForViolet

Oops, sorry. Here is what I'm looking at relating to taking a break:

healthunlocked.com/cure-par...

You may also like...

Question about taking a break from B1/HDT

and I don’t take any meds. Recently, I became aware that it is recommended to take a break from HDT...

duration of vitamin b1 break

according to you, given the low dose, should I take a one week break after 3 months?, 6 months?...

How to take sublingual B1

sublingual version of B1. I started taking it in 2017 and after a few months realised my slowness,...

Take a break after three months in case of low dose of vitamin B1

therapy protocol: When you take a low dose, per day such as 300 mg, is it necessary to take a...

+* Day 51 of taking TTFD: (B1) :-)

I ended up with High Blood Pressure taking TTFD. I no longer take TTFD. Based on my experience, I...