I am having success with High Dose Thiamine (HDT) :-)

[Gcf51]

12/01/2022

I am happy to report; I am having success with High Dose Thiamine (HDT). I have been taking Thiamine HCL for the last 57 days (10 days at 1200mg). I am 71, 170lb, 5’ 9-1/2”, white male; diagnosed with Parkinsonism February 2019, PD via DaTscan August 2019.

I am currently taking 6 tabs of C/L a day and one dose of 1200mg[a] Thiamine HCL in the morning. I am getting more than my normal 7 hr sleep, my Tremor is slight (mainly only when excited), my energy level is good, my mood is good, my BP is controlled and my digestive system is good, my aches and pains are reduced. I have noticed remarkable improvement in my eyesight. I have been walking 1-1/2 mile 2 to 3 times a day weather permitting[c]. I am now capable of relearning dance steps that I quit due to loss of balance. (I am also finding that I can do dance steps, I found too difficult 10 yrs ago.)

But, I am not experiencing the Utopia[d] I did on TTDF—That’s if a constipated sleepless Rainman on steroids can be considered Utopia (I had so much energy that I went back on my mood stabilizer from 40 yrs ago). I had to quit the TTDF because of HBP[e], I did try TTDF again, but finally gave it up—After losing all confidence, I could accurately divide 50mg capsules (see my first comment posted below this post).

What I miss the most: I have always been quiet. I figure mainly because I stumbled-over words and tend to stutter. Yes, I was embarrassed at 5 that I couldn’t get my Sunday School teacher to pronounce my name right; Yes, at 8 I was embarrassed to be sent to speech therapy; Yes, it is ingrained in my personality; And, I am sure my speech deteriorated some due to Parkinson’s; but not as much as it appeared with the sudden improvement on TTFD—I began to socialize. I feel my socializing is improving, but probably will never again be where I was with TTFD—That was truly all in my head, a Placebo.

My biggest problem with TTFD is: It is not available in doses that allow zeroing in on my sweet spot.50mg is too much for me and there is no accurate way to divide into smaller doses. Best I can tell, I would need 5/8ths of 50. In Japan, prescription drug ALINAMIN F is available in 5mg, 25mg, 50mg tablets and tablets should be easy to divide in half. Why only available in Japan? (ALINAMIN F is TTFD that doesn’t leave you with garlic like breath.)

During the break between TTFD and oral, I did try Sublingual. But, since I have no problems swallowing the larger oral pills and because I found it to be a hassle to wait for the sublingual to be completely absorbed[g], I chose to use oral.

[a] I first settled on 1400 for a few weeks but (while trying to reduce C/L, I reduced to 1300) and later reduced again to 1200. I got antsy when I tried to reduce C/L even with the reduction of B1—The odd part, after giving up, I wasn’t able to increase B1 back up.

I have a bad neck and currently very seldom have to take anything for the pain.

[c] Catch-22, do I feel better due to exercise or B1—well, I’m exercising to gain better control of my BP and re-learn coordination; the medical community endorses exercise to improve PD symptoms and does not endorse HDT.

[d] At the time, I called my Utopia, Mania. I was diagnosed as having Bipolar Tendency 40 yrs ago due to my reaction to Paxil. My view on Mania: It’s only a problem when you tell someone undeservingly they are stupid, plus there’s also the possibility of a rapid crash. (Note: During my mania, I restarted my mood stabilizer, but I am now off (I quit more than 2 weeks prior to taking my first Thiamine HCL.)

[e] I had been trying to get my GP to increase my BP meds for years. I have my BP somewhat under control, after my GP made 2 adjustments to BP meds and after I adjusted to my C/L (2-1/2tabs 2 times a day [5tabs] to 1-1/2tabs 4 times a day [6tabs]. I changed my C/L[f] mainly for less time between doses, because I noticed my BP started climbing before my next dose was due. I believe my trip to the ER with 200/120plus was an anxiety induced panic attack.

[f] I have tried to decrease my C/L back to the 5mg but my anxiety (return of symptoms) got the best of me, even with a decrease in B1. The reason I had tried to reduce my C/L was I hoped some of my cramps were from C/L induced dystonia. Maybe, I will try again after a few months.

[g] I understand there are some who question if you really need to hold Sublingual in your mouth for a long period of time. Well…     Dap1948 pioneered Sublingual and, so to speak, wrote the book on it; also quite a few on her Facebook page have had success with it. All I will say is Dap has had success with taking the time for complete adsorption and unless someone proves otherwise—take the time.

[Gcf51]

First, it is evident that capsules are filled by Volume and the contents are blended to make 50mg fit into a full standard cap—22.58% of contents is TTFD (Note: Contents appear to be a blend of a powder and granules which easy separate when handled).

Too critical and possibly concerned about nothing: I was wondering why when I made 6 equal caps from 5 caps—my final weight varied each time by as much as 10mg. So, I measured 10 capsules. The lowest wt. #5 was by sight the lowest wt. (250mg) and the highest was by sight was the highest #10 (293.5mg). It is comforting that by sight and by weight the lowest and highest are the same, meaning at least at filling contents was somewhat uniform—I have no way on determining uniformity (uniform at filling, still doesn’t mean that some settling (separation) hasn’t occurred of contents during shipping and handling).

Measurements

[LAJ12345]

you can go to a compounding pharmacy and ask for it to be made into smaller doses possibly. Hubby had to come off mirtazapine so to wean him off I had it compounded from 15 mg tablet to 3 mg. They add a filler like rice flour and pack into tiny capsules. Possibly they could do the same with TTDF? Worth asking.

[Gcf51 in reply to LAJ12345]

Thanks, Having success with Thiamine HCL, I probably won't try TTFD again.

[gaga1958]

Is your C/L 25-100? Is your HCL 500mg each? How many capsules do you take that gets to 1200? Was TTFD thru a prescription? I’ve never heard of it before, how did you learn about it? Does Dap have an opinion about it?

It’s wonderful you’ve found something that is working for you I wonder if I should increase my HCL as I’m not seeing improvements. I’ve been using 4 capsules at 500mg since last spring

Thxs for posting

[Gcf51 in reply to gaga1958]

My C/L is 25-100. I have 500mg pills and 100mg caps. 1200 is 2 of ea. I take all 1200 in morning.

TTFD was not prescription. According to manufacturer ALINAMIN F is adsorbed the same as TTFD without the supposedly garlic like breath. Another name for TTFD is Fursultiamine and ALINAMIN F is Fursultiamine-HCL.

I highly recommend joining the facebook group and buying the book. With B1 the dose right for you is different for everyone and can go 3,000mg a day or higher.

facebook.com/groups/parkins...

[gaga1958 in reply to Gcf51]

i dont do Facebook but maybe the book thxs

[Gcf51 in reply to gaga1958]

book amazon.com/Parkinsons-Thera...