Prayers Answered, TTFD in small doses - Thiamine (B1) Therapy works.

[Gcf51]

I started at 20mg (according to my notes a little less than where I left off) but; I felt antsy for a couple of days, so I took a day’s break and reduced to 17.5mg. Again after another week, feeling antsy and if today, I will plan on another day’s break and reducing again.

So the story continues. There seems to be a never-ending cycle of return of symptoms and yet another lower dose required with TTFD. Is this a bad thing — So what if I get down to RDA as long as I don’t have progression of PD symptoms?

Update 3/21/23; I have been taking 17.5mg of ALINAMIN F. I am having significant results [tremor (less than with the HCL), sleep (good), energy (good), drooling (better), and BP (good)]. The largest improvements with ALINAMIN F have been mental charily and mood.

The Japanese market is confusing; there are other ALINAMINs available (A, EX, JO, etc. — some are sports drinks), but all are OTC with other additives. Most literature for ALINAMIN (Fursultiamine Hydrochloride) indicates non-garlicky taste. I won’t say it tastes good but 10-fold better than TTFD. I will add, taste-wise, it opens up the door to mixing with liquids to dilute and drinking only a portion of, to reduce your dose. I just checked my source of ALINAMIN F is sold out.

[eschneid]

Trying once again for that elusive dose of HCL. Does anyone else have an opinion or experience with this ALINAMIN F instead of HCL. Gcd-happy to see your experimenting is showing results, keep us posted.

[Gcf51 in reply to eschneid]

I myself had success with Thiamine hcl. I was on 1100mg before deciding to try TTFD again. I am chasing the feeling I had on TTFD. Can’t say that 17.5mg is the same feeling as I had with 50mg, but the 50 was also lack of sleep and constipation. My mood is almost as good with the 17.5mg as it was on the 50.

ALINAMIN F is TTFD with a hcl attached. The hcl comes off during digestion leaving TTFD to be used in the body.

[eschneid in reply to Gcf51]

Thanks Gcf... feel good!

[gomelgo]

Can you please share a link to the one that is working for you that is sold out?

[Gcf51 in reply to gomelgo]

That source is still sold out. It looks like this source takes credit cards, but does not list the 5mg as an option. 50mg tablets dpkitaoka.com/product-page/...

Note: Fursultiamine hydrochloride is available in sports drinks in Japan; it doesn’t have the foul taste of TTFD; so dilution of 50mg in a 1000ml of water (each 100 ml equal 5mg) should be an option. Water Solubility is 0.123 mg/mL, so if I done right it would take 407ml of water to completely dissolve 50mg. (I just dissolved a 5mg in 30ml of water, a little of your favorite favoring and you wouldn't know it's there. It was a cloudy and supposedly takes 40ml to completely dissolve.)

[gomelgo in reply to Gcf51]

AS of today I have decided that B1 is not for me. It was making me way more jittery than I already am. I need something calming not, energetic.

[chartist in reply to gomelgo]

That is an indication that your dose is too high. The effective dose range that has been reported on this forum is 25 mg to 4000 mg.

Art

[gomelgo in reply to chartist]

was taking 50mg or less ... and not the sublingual kind and I wasn't taking it every day. on the days I took it, I would be more jittery. And now my tremor is worse for weeks after I stopped taking it, and my anxiety is up too

[kevowpd in reply to gomelgo]

Anything that can help can also hinder/harm as we are all different and PD pathology is still very poorly understood. The idea that B1 is all upside with no prospect of downside is mythology.

[Gioc in reply to kevowpd]

😂

[chartist in reply to gomelgo]

Sounds like you're right, B1 is not for you.

Art

[gomelgo in reply to chartist]

at least for now ... good to have it in my "back pocket" though in case I start to slow at some point.

[Danieldeansr50 in reply to chartist]

Where can I get TTFD. ive been diagnosed with parkinsons-ism disease since i was 28 im now 50

[Gcf51 in reply to Danieldeansr50]

I would not recommend TTFD.

As for me the biggest improvements have been from High Dose Thiamine (B1) and exercise. I recommend Dap1949’s book and her Facebook Group.

amazon.com/gp/product/B09TZ...

facebook.com/groups/parkins...

[chartist in reply to Danieldeansr50]

I do not recommend TTFD for PD and I don't think the originator of this post does either as they are now using standard thiamine hcl last I read. Thiamine hcl and thiamine mononitrate are the two that have shown lasting benefit on this forum and thiamine hcl in Dr. Costantini's clinical experience. I wrote the following about dosing thiamine hcl here :

healthunlocked.com/cure-par...

Art

[Gcf51]

mimaki-family-japan.com/ite...

They do not accept credit card. I had to wire transfer payment (I used xe). The wire transfer took 4 days, I still received in 2-1/2 weeks. xe.com/mt/us-money-transfer...

[Gcf51]

Update 4/16/2023: I am taking a break from ALINAMIN F—my tremor and my drooling started getting worst. My first thought was return of symptoms, so tried reducing dose—wrong, but increase didn’t correct either.