Getting started on thiamine hci

[Tex1]

My father had Parkinson’s snd I stumbled on this information about thiamine hcl, would like to start him on it but would like guidance. I read Dr C had a stroke, what is best wY to get started? Are the other doctors accepting the email form Submisdion I read about?

[Tex1]

Sorry for the misspellings I didn’t check before posting lol

[Hidden]

Diagnosed 2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, 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. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

[Hidden]

join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... …

Parkinson's Relief, Questions and Answers

Guide:

1. Read page, About, open links.,

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document, answer and submit.

[Tex1]

Thank you! Very helpful I will share this with my dad and get started!

[Tex1]

Should we still fill out the first appt doc or just start taking the B1?

[parkie13]

Got to have a doctor to get a prescription. Plus you never know if something is going to happen.

[Tex1 in reply to parkie13]

Wasn’t sure if form would go to anyone since doctor is unavailable?

[parkie13 in reply to Tex1]

I never filled out the form, somebody else posted it if I remember correctly

[Tex1]

Ok thank you

[Hidden]

Tex1,

The following page will answer most if not all of your questions about HDT and much more!

healthunlocked.com/parkinso...

If you want to read more about the HDT protocol you can also click oin my icon and then just select which one you want to read from the list.

Good luck to you and your dad on the HDT protocol and please keep us posted!

Art

[Tex1 in reply to Hidden]

Awesome, thanks!

[Tex1 in reply to Hidden]

Thank you for all the information you have put together, very thorough, I do have a question, there are links to send info to Dr C but, I understand he is unavailable, so do we just try to go forward with the very helpful instructions, I also understand it is good to have support when trying to get dosing correct.

[Hidden in reply to Tex1]

As far as starting on HDT and Dr. C being unavailable, that is a decision you have to make for yourself and with your doctor's approval so your doctor can determine if it is compatible with all of the meds you may be taking.

This forum is a great place for support because well over 50 members are currently testing or using HDT and the combined experience of those members will be very useful for you while testing HDT. As good as that is , though, it is not a substitute for your doctor!

As far as dosing, what you weigh seems to play an important factor in what your dose should be to start. Lower weight generally indicates a lower dose. As you can see from the link that I posted, Dr. C seems to be going with lower dosing in his email patients as his Italian patients seem to be able to handle larger doses with very rare symptoms of overdose. The lowest effective dose seems to so far be in the 100 to 200 mg / day range while the highest effective dose seems to be at the 4 gram / day range. My opinion is since Dr. C will not be able to help you at this time, it may be a bit safer to start low and work your way up, because some people have reported a rash at higher dosing. You should also run it by your doctor before starting just in case HDT is not compatible with anything you are taking. The correct form to use is Thiamine HCL or Thiamine HCI which are just different ways of saying the same thing. In the "thiamine primer page" you will find links to different suppliers of thiamine in a couple of forms. The 500 mg capsules from Vitacost seem to be the best overall deal and are easier to swallow, because they are smaller than the 500 mg pills. You can also get 100 mg capsules from another link on that same page which may be useful in fine tuning your dose.

Another "very important " point is that response varies greatly from person to person and some people have mentioned that they saw zero results for the first 3 to 6 months while others have reported a response from their very first day! The problem this creates is at two or three months in and no results, it will be easy to think that it is not working for you and will make it extremely difficult to continue testing HDT. Imo, because of the potential benefit, it is worth giving it a fair shake in terms of time. To keep it real, it is clear that while the majority of HDT testers have improved on B-1, there is a small group of members who have reported no benefit. So that has to be considered too. It is just like any PD med, some people report positive results while others report no improvement for the same med and the only way to find out for each person is to try it. It is not an expensive supplement so, money wise, there is little if any risk. It is absolutely possible that HDT can worsen PD symptoms, but in all of the over 3,000 patients that Dr. C has treated with HDT, those worsened symptoms are only temporary and resolve once the dose is correctly established. I know that sounds very simple, but it really can be very concerning for PWPs who are afraid that the worsening will remain even if they stop HDT. A temporary worsening of symptoms is a sign of overdose and should be used as a guide to adjust the dosage appropriately.

Thiamine has a very good safety profile, but anyone can be allergic to anything. A couple of people have reported a rash, diarrhea, a rise in blood pressure and some were able to overcome these issues with a dosage adjustment or by switching to the bi-weekly injections or adjusting their blood pressure meds accordingly.

Post any and all questions as other members may have the exact answer you are looking for.

Good luck!

Art

[Tex1]

Thank you for the time you are taking to explain this, I truly appreciate your effort. We have ordered the B1 and have a doctor who is open to try things so we will also have his input, thanks so much!