This works for me:
My thiamine hcl dose, four grams a day.
I have raised my carbidopa levodopa to 1,400mg total a day.
I was diagnosed, 2012. Four years ago I was Stage 3 - 4, going down hill fast. THREE years ago I was "blessed" by Doctor Costantini. Presently Stage 1--2.
Glad it is working for you, Roy. High-dose thiamine is helpful for me also.
Park I have not taken anything for this condition but now i am noticing that i am slowing down and today was a day of slowness so much so that ive got a lb of ceylon heading down here and im also getting 6 bottles of solgar delivered next week so I will be taking the two of dem at the same time ...do you see any problems...there? i'm kinda of anxious about the idea of maybe feeling better...although it all remains to be determined....whats a high dose of thiamine? How many of the 500mg pills should i take per day? the ceylon ive preety much figured on taking 3 =1/.2 teaspoons in the morning and 3 ah dem in the after noon then 3 more a dem in the evening bfore i go to sleep or is this all to much..and I Should start out slowly your thoughts. WOULD BE APPRECIATED!!
I certainly understand the motivation to do everything possible to remedy the Parkinson's. Nonetheless, I recommend undertaking only one intervention at the time so you can understand what is causing any changes for better or worse. I do recommend getting a scale for measuring out small quantities of cinnamon, taking no more than 3 grams daily mixed with food, avoiding cinnamon if you suffer from any major inflammatory condition, and quitting if it aggravates any inflammation..
Thiamine dosage instructions can be found here: highdosethiamine.org/
Regarding thiamine hcl. Solgar tablets are choke hazard.
Capsules are easy swallow.
Doctor Costantini directed:
Early or mild symptoms - 2 grams daily
Moderate symptoms - 4 grams daily
Severe symptoms - 6 grams daily.
Divide into two equal doses. Take first dose at breakfast. Take second before lunch.
Before starting with full dose take a small amount and watch for any allergic reaction.
More details on HDT, levodopa, dose adjustment found in Facebook group Parkinson's thiamine hcl.
I've been taking 2 grams/day of B1 for about 3 years now. I live in Thailand where bulk Thiamine powder isn't available, but I've always been able to find a friend or relative to bring me a kilo when they came to Thailand for a visit. But this pandemic has eliminated my supply of mules! I'm about to run out and I don't know what to do. None of the online sellers are willing to ship to Thailand, and i can't source it locally.
The only b1 I've found is small pills - I'd have to take 20 pills/day. This would be VERY expensive, and eating all those capsules would probably constipate me for life!
I remember reading that it's possible to get an injection instead of eating the B1 but I can't seem to find info on this. Anybody know, what's the injection, how much and how often does one get the injection, and how do I convince the conservative Thai doctors that it's safe and I'm not crazy?
Thabks.
Great news jdc3! Here’s a link to get your B1 shipped to Thailand!! It’s life giving store.comGood luck!
Roy,
I thought you were taking 6 grams/day of B1? When did you switch back to 4 grams and why did you switch back?
Art
Yesterday. Could not identify benefit.
Hi Roy,
Just so as not to be repetitive, I tell you something recently that I experienced following a change: I had been off b1 for about three weeks and very gradually began to drag my leg affected side resulting hip pain in the morning. resumed b1 injection i was back to walking normally in two days. No pain at all.
Blood tests after 5 years of not doing them , all regular except cholesterol at 210. It would seem a little out of the ordinary.
I hope to maintain decent shape for the next few years, I need it! 
Hi Gio,
How long did it take before your symptoms came back?
Art
Hi Art,
three weeks a month or so without thiamine, but for a couple of months earlier I was under 70% of my dose of two injections a week, in other words I was injecting intermittently and irregularly from time to time.
This led to a weakening of the muscle strength of the affected leg and of all that part in a very gradual way until the hip pain is sore.
Since the muscles were weaker, I tended to drag them with consequent incorrect and painful posture, then I immediately regained my strength after taking thiamine and my posture returned to "normal" (for a Pwps normal it is always "almost" normal).
Roy, isn’t 1400mg of c/l a day a lot? Also what do you feel the high dose B1 helps you with? Thanks
Doc. Fahn- upper limit 2000Mayo Clinic- no limit
B1 does not reduce tremors
Carbidopa levodopa
Jamal Julka
“Correction: Dr Fahn is my nuero and yes he told me there is no upper limit”
Roy, when did you start c/l?
Year 1
So you went from 0 to 1400mg in a year? Do you not think this is maybe the main reason your symptoms have reduced and not the b1?
Year 1 = 2012
Here's a thread from 3 years saying you take 600mg
healthunlocked.com/cure-par...
Do you not think increasing your c/l from 600 to 1400 may of had a huge effect on your symptoms?
B1 seems to have an positive effect on some ppl which is great. But to completely ignore an 800mg increase in c/l seems odd.
I'm writing this as I believe what you're saying is misleading to any newcomers who believe your improvements is purely down to b1.
Clearly B1 is not reducing symptoms sufficiently if Roy has needed to increase his c/l by such a huge amount
Last week was first time I moved up the dose
What was your dose before that?
@royprop, did you travel all the way to NYC to consult with Dr. Fahn? I know that he is the Superstar of Parkinson's treatment, but all the way from New Mexico?
RKM
For tremors try CBD Oil 1200mg. Read instructions on bottle - need to start out slowly.
Any diskynesya?
None. I received this:
Correction: Dr Fahn is my nuero and yes he told me there is no upper limit
Roy, what do you believe B1 helps? I’m interested in starting.
On group page under Files, document “benefits”
Y
"Parkinson's disease"
Vitamin B1 use instructions :
Join my Facebook group Parkinson’s thiamine hcl
Roy is the most followed and transparent person on this forum. (more than 250 followers). Many think they know Roy even more than Roy himself.
To me he is a great and courageous pioneer of terra incognita such as high doses of C / L or b1, and what he does is partly a mystery in unknown contexts.
Roy, called the American by doctor C, you have always been the first, thanks you very much and a greeting from Italy.
My wife is impressed. From the bottom of my heart I thank y ou. I've worked hard these many years.
I agree with you totally. When my husband was diagnosed with PD and C/L helped somewhat I did a lot of research and found Roy on FB and HealthUnlocked. Helped loosen up the tight muscles for my husband and he was able to move around better. Been taking HB1 for a few years now. We thank you Roy.
Get in touch with your "mules" -- explain you need someone to ship you a kilo. Sounds to my calculation that you only need a kilo once or twice a year. Pandemic probably over by time you go through two kilos. Want to really go crazy? Take a plane to Australia -- ship yourself a couple kilos.
It's illegal to ship it here. 4 possible outcomes:1 - I get lucky and it shows up
2 - Customs intercepts it & keeps it
3 - Customs intercepts it & I pay the duty (could be very expensive) & go pick it up
4 - Customs intercepts it & classifies it as contraband. Then I'm screwed.
Medication not working 
DBS doesn't seem to work?
Meds not working well again
Ongentys this medication WORKS!
