1) Don’t start Carbidopa/Levodopa or change. (I won’t say don’t follow doctor’s instructions, but most doctors are not aware of HDT and please discuss with your doctors, mine says if helps—great, and I have had changed her instructions via discussion.)
2) Read Dap1948 's book “Parkinson’s and the B1 Therapy.” The online version might be best due to links and searchable. amazon.com/gp/product/B09TZ... .
b) With B1 Therapy, the biggest improvements come with time. Find your sweet-spot and give it time.
c) Take note of symptoms. I wish I had kept a better daily log of them. You need to establish a good baseline to judge your improvements. While increasing B1 you should note any improvements. Some will be things you did not associate with Parkinson’s.
d) Start magnesium, B complex, etc. per book. Don’t take any other supplements until after few months at sweet-spot.
e) After noting symptoms, giving suggested supplements time to work, start High Dose Thiamine (HDT), re-noting symptoms.
f) Use updated symptoms to judge finding sweet-spot. The author is big on not trying different things while trying to find your sweet-spot.
g) My sweet-spot is 1000mg of B1 hcl oral, everybody requires a different dose, and there is no foolproof starting dose. On top of the Facebook page is files, there is a file in it with current recommendations.
h) I say don’t be overly concerned with staying away from taking B6 (P5P- B6 is only a concern if taking levodopa, which includes I believe mucuna pruriens). My current thinking is: I overreacted to the B6 issue, and it is completely possible that taking a B-complex may provide enough B6 to supply the B6 that my body needs.
i) I don’t recommend TTFD. I gave up on TTFD (thiamine tetrahydrofurfuryl disulfide - a B1 derivative) because: I would settle in on a sweet-spot, within a few weeks I would overdose, and I repeated again & again.
j) I do not like the term Overdose: to me it instills a fear of drug withdrawal and for me it is just return of symptoms from gained improvements (very rarely does anyone have a bad experience). You will find and updated list of recommended starting doses in files at top of Facebook page.
3) The only thing that I know of that has been proven to delay Parkinson’s is exercise. Start exercising - Walking helps me (I walk 3-4 times a day, approx. 1-1/2 miles (2.4km) less than 28 minutes, weather permitting).
4) I take a ton of supplements, I am not sure if any really help (I need to review what I take).
My 2 biggest improvements, HDT and exercise. I have been taking B1 for 1-1/2 years and feel my PD is under control. I now look forward to the future.
I have no problem swallowing, I found holding under my tongue a big hassle, I did try sublingual.
I know of nobody having success with TTFD or Benfotiamine. I question if a standard break would be long enough to flush Benfotiamine (a fat soluble) from your system.
Thare is NO MECISTOON THAT EVERSES THE SYMPTOMS OF PD!
I have had PD since 1992 and nin 1994 I started to do FAST WALKING.
I walk every second day for one hour. NO MORE!
You may only be able ot walk as fast as you can for five minutes but, it will slowly get longer and longer until you raech one hour within six months.!
Keep on for the rest of your life, because it is not going away.
3) The only thing that I know of that has been proven to delay Parkinson’s is exercise. Start exercising - Walking helps me (I walk 3-4 times a day, approx. 1-1/2 miles (2.4km) less than 28 minutes, weather permitting).
I have learned that I have a “tell”. I have a bad neck, when my break is too long, I start having to take a lot of pain killers; it’s time to end the break.
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Important question: Reduction of B1 over time is inevitable, but how far does this go?
