Why is not working the HDT on me?

[UncleCharlieyoyo]

Hi everybody, I'm a 65 years old man who was diagnosed with PD beginning 2020. My weight is just 140 lbs.

I has been very excited about the HDT and the whole "sweet spot" thing, so I started it this last April 26, taking 500 mgrs of Thyamine daily (Solgar brand), just after reading the Daphne's book. Now after almost four weeks later, I'm taking 1500 mgrs daily in two parts: the first one around one half hour after of my non cooffe breakfast, (10:00 AM). and the second one just after lunch, (1:30 PM), but the point is I haven't seen improvement on my condition / or symptoms yet, so I start to feel concerned about why the HDT is not working on me or even if I could be doing anything wrong following the HDT protocol.

Has anybody in this group had any similar experience?, or could anybody tell me, what's the shortest period of time to increase the dose without compromising the whole process?, as I'm thinking to increase the dose to 2000 mgrs this next wednesday 24 of May (and I wouldn't want to wait two or three more weeks if I can make it happens faster).

[Bolt_Upright]

Daphne has a FB group dedicated to HCL. I can't find the link, but Roy's HDT FB group is here: facebook.com/groups/2322600...

[Boscoejean in reply to Bolt_Upright]

facebook.com/groups/parkins...

[Gcf51]

Roy has gone a little bonkers with name calling and what nots. I recommend Daphne's group facebook.com/groups/parkins...

[PixelPaul in reply to Gcf51]

yes, best to join Daphnes group.

[nellie58 in reply to Gcf51]

Yes, I was on the receiving end of Roy's abuse. It is a shame because he has done a lot of good and his page is full of wonderful links and advice. Daphne's page is a safe space where people are allowed to talk freely and everyone is supportive.

[park_bear]

It takes 4 months for most improvements to become apparent

[Gcf51 in reply to park_bear]

I was at the sweet spot for 130 days with 1100mg hcl. Been with 20mg of Alinamin-F (TTFD-hcl) for 80days and it looks more very promising...

Should clarify: I have been taking Alinamin-F for 80days. My dose has been 20mg for the last 6 days.

[michelagvolpe]

it didn't work for me even with very small doses of B1. Every now and then I get an injection, once a month, just to activate the whole metabolism a bit, so the worsening is minimal and doesn't last long. Maybe B1 doesn't work for everyone.

[LAJ12345]

have you got the right B1 ie Thiamine HCl?

[Windermere1]

do not join Roys group. He is 100% against everything we promote in Daphnes group including being very abusive. PD people need support not abuse

[Eddie129 in reply to Windermere1]

I have to agree with you. It’s either Roy’s way or the highway. It’s a shame because I think his heart is in the right place. He truly wants to help people but he’s so stuck on a specific therapeutic dose - and can’t accept that individual results vary.

[Dap1948]

The book suggests 4-6 weeks at each dosage. It can take that long for the thiamine to build up, for symptoms to improve, and for you to notice. If you move up the dosages too quickly you will zoom passed your sweet spot and put yourself into overdose.

Yes please join our Facebook group. Lots of nice supportive people there…

[Sturge in reply to Dap1948]

One quick question for anyone having success with B1 100mg micro-lingual thiamine mononitrate (Superior source). To spit or not to spit? Some mornings I make a lot of extra saliva, and I have read reports the the B1 Mono is not good for the gut and should be spit out. Any advice? Also, been 5 weeks taking 100 mg M/W/F/S, and do not think I have gotten worse, but not noticeably better. Is it too early to ramp up to 100 mg daily?

[Dap1948 in reply to Sturge]

Try not to swallow the saliva for 30 minutes to give it time to be absorbed but then swallow. There will be such a tiny amount of thiamine mononitrate remaining that it won’t do any harm. Avoiding mononitrate when taking B1 orally Is only a precaution because mononitrate is slightly less water-soluble and might cause nitrates to build up in the kidneys when taken in huge oral doses.

The book recommends remaining on each dosage for 4 to 6 weeks to allow B1 levels to build up in the system, to allow symptoms improvements to develop and to allow you time to notice the improvements. Only stop if worsening symptoms develop.

[Sturge in reply to Dap1948]

Thank you Daphne!

[1LittleWillow]

It took a couple of months before I began to see improvements (this was with a 500 mg dose which I increased to 1 g at about the third or fourth month), and the changes didn't plateau until after the seventh month. I've been taking 1 g/day for almost 5 years now and the improvements have remained. I wouldn't give up yet, but I also wouldn't increase the dose too fast or too high.