Interested in B1?

[Dap1948]

I’ve started a Facebook group for people using or thinking of using the B1 protocol and I welcome new members. It’s a place to ask questions, report progress etc. It’s based around my book “Parkinson’s and the B1 Therapy” and any advice I give has come from the research for the book and discussions with Dr Costantini’s colleagues Marco and Dr Roberto Fancellu so I hope people will think me qualified. I also speak as a user for five years and so I know only too well the confusion which happens along the way when we say ‘Is this dose too high or too low?’ I have several knowledgable others in the group, whom I sure we can call on to give their opinion too from time to time. I’m not after a large group, just people who genuinely want to feel better and help others feel better with B1. The link for the group -

facebook.com/groups/parkins...

[ForViolet]

I would be interested but quit Fb sometime back. I'm sure it will be very useful to others. My husband continues to use thiamine/B1.

[jocelyng in reply to ForViolet]

FYI, there has been a group for quite some time. Is there a need for another? facebook.com/groups/2322600...

[PixelPaul in reply to jocelyng]

That group is led by someone who was a former member here. Unfortunately he cannot help himself from injecting politics and racism into the discussion, in addition constantly posting the same things over and over and often misleading or inconsistent advice. I for one welcome Daphne's new group as a companion to her excellent book.

[Dap1948 in reply to PixelPaul]

Oh thank you so much! I don’t want to be critical about the administration of the other group, but when a post was posted by the administrator saying the form of B1 which I take and recommend was dangerous and the wrong one and when I tried to clarify the facts, which was needed because he had put the wind up a lot of people who were taking that form, I was accused of criticising! So when I had calmed down I thought it was time to move on!

[ssrs in reply to Dap1948]

So you will not be a part of that group the other admin is in charge of?

[Dap1948 in reply to ssrs]

Correct. I won’t be writing on it anymore.

[Dap1948 in reply to jocelyng]

People can belong to as many groups as they wish. It’s all extra information for them. I’m not in competition. I was the ‘group expert’ in the other group for quite some time but let’s just say it was time to move on...The other group is thiamineHCL and focuses its advice mainly on oral B1. My group covers all forms of B1 but only B1. The other group started posting other subjects.

As I said, all are welcome!

[ForViolet in reply to jocelyng]

This shows as a reply to me but it looks like people got that it was meant for everyone. I'm not on Facebook so know nothing about the group there. Cheers!

[Dap1948 in reply to ForViolet]

Hopefully you’ve bought my book as it does cover everything you need to know long-term B1 use.hyperurl.co/B1Therapy

[Bolt_Upright in reply to Dap1948]

Your link is not working.

[Dap1948 in reply to Bolt_Upright]

hyperurl.co/B1TherapyOr

amazon.com/Parkinsons-Thera...

[Bolt_Upright in reply to Dap1948]

This one worked HU does not seem to be able to parse the hyperurl links.

[Dap1948 in reply to Bolt_Upright]

One more attempt! hyperurl.co/B1Therapy

[SusanRenee]

Thank you. Got your book & was hoping for just such a forum.

[Dap1948 in reply to SusanRenee]

Oh that is good to know! 🤗

[KERRINGTON]

I've taken a lot of B1 without incident over the last 4 years. Can you offer any advice as to what to do about Thiamine HCL starting to cause high bp. My sweet spot seems to be, for the moment, 1 tablet 500mg Solgar B1, 5 days a week. I also take about 400 mg magnesium theonate 4 times weekly. Is there another form of B1 that may be better ? Thanks for any thoughts.

[Dap1948 in reply to KERRINGTON]

High blood pressure is often caused by the dose being too high. When did you last reduce it? My dose over five years has gone down from 7 sublingual tablets a week to 2 tablets a week and I’m currently on a break so might return to B1 even lower.

[Tonypet]

Hi Daphne,

Thank you for your incredible work. I just saw an interview with you and have purchased your book.

I am a 51 year old male, who started seeing signs at least early last year of muscle stiffness and slowness on my right (dominant) side. I was only diagnosed 6 weeks ago. I have not started Sinemet yet. I have been delaying to fully understand my current condition first. I have noticeable but manageable symptoms (rigid bent arm and hand, and minor impaired walk due to lower right leg/foot stiffness). I would like to address the symptoms, however.

I heard you mention in the interview (no silver bullet interview) that if some one has not started L-dopa that they should perhaps NOT start L-dopa and start with B1 therapy alone (if I understood correctly). Can you confirm this position?

Also, will your book reveal the dosage and protocol I would need (I am 6'6" tall (198cm), and 300lbs (about 25% BF). Would that probably require a higher starting dose? I started taking 200mg of B1 HCL oral tablets twice a day (400mg daily) approximately 2 weeks ago, based on something I THOUGHT I read, was a good starting dose. However, I think I may have misread it!

Any guidance or information you can provide me would be greatly appreciated.

Thank you,

Tony

[Dap1948 in reply to Tonypet]

The first thing to say is that you can gain a lot of information and support by joining our Facebook group,

m.facebook.com/groups/parki...

Quite a number in our group take B1 with no medication. They, like you, have been recently diagnosed. They are managing well on B1.

As to how much you will need, we don’t yet know what factors affect dosage. We think it might be age, gender, weight, length of time since diagnosis, and seriousness of symptoms. (You’re scoring high on some and low on others!) We’re hoping that a study will look into this issue very soon. The book suggests starting at 500 mg a day of B1 hcl. You might need 500 mg x2 a day. Either of these would be a good place to start for you. Aim to stay on the dose 4-6 weeks, to allow time for the symptoms improvements to become apparent. Monitor carefully. Listing your symptoms and scoring them everyday is quite a good idea. When you see the slightest improvement, stay on that dose. It’s all in the book. Good luck

[Tonypet in reply to Dap1948]

Thank you for your kind reply. I read most of your book yesterday. Thank you for writing it.

I may stop taking the daily 400MG dosage I was taking, for a week or two to ensure I have a good idea of my Baseline first.

I am also taking some other supplements like fish oils and Lion's main extract pills . I've started taking B complex 100 and magnesium glycinate 200 mg tablets daily, earlier this month. Which I will continue.

Sleep had been poor, but had been for many years. I have also tried to do daily meditation and breathing exercises to help with anxiety and stress.

I've also tried to maintain a high heart rate cardiovascular exercise at least every two days, weight training, walking, and infrared sauna (which I have in my home).

I'm trying to incorporate some intermittent fasting into my life as well (which I already practiced somewhat prior to diagnosis), to Aid with autophagy.

I am grateful to you and the community for being there!