+* 6/27 day 41 of taking B1 as TTDF: :-) - Cure Parkinson's

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+* 6/27 day 41 of taking B1 as TTDF: :-)

Gcf51 profile image
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*** I ended up with High Blood Pressure taking TTFD. I no longer take TTFD. Based on my experience, I would not recommend TTFD. ***

+* 6/27 day 41 of taking B1 as TTDF: :-) Decided to go 2nd day without, this morning near perfect, got a little over 8hr sleep, first time in the last 41days and not bad for a person with a normal of about 7hr.

I still have no idea of half-life. I know Fursultiamine the FDA-approved drug for Alzheimer's has to have some research behind it, wonder if I can find and it is another choice for B1ers. drugs.ncats.io/drug/T3557LWB27 . This link says a supplement and not an approved drug. ndrugs.com/?s=fursultiamine...

I am starting this as a new post. Pervious report healthunlocked.com/cure-par...

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Gcf51 profile image
Gcf51

I just held a full cup of coffee over the sink, I stopped timer at 5min - no spill coffee.

Gcf51 profile image
Gcf51

Link to a Parkinson's trial in Japan no pub results: center6.umin.ac.jp/cgi-open...

Bolt_Upright profile image
Bolt_Upright in reply toGcf51

Wow, that is a great find! fursultiamine 100mg.

I wonder if we e-mailed Noriyuki if we could get more details?

I am assuming they are doing 100 mg per day. Assuming sublingual. Might even find out the results.

Bolt_Upright profile image
Bolt_Upright in reply toBolt_Upright

That Doctor Noriyuki Miyaue seems like a big shot. Google their name with Parkinson's and you find a lot of stuff.

Gcf51 profile image
Gcf51 in reply toBolt_Upright

I would have thought so, but no published results.

Gcf51 profile image
Gcf51

Just took my Blood Pressure (higher than my normal). Not Good, searched net: "When the amount of vitamin B1, also known as thiamine exceeds the normal levels in the body, it can cause hypertension or high blood pressure. Similarly, when high doses of vitamin B2, usually referred to as riboflavin is taken, it can cause hypotension or low blood pressure." medicoverhospitals.in/artic...

My blood levels of B1 were 13 fold average on day 3. I will look for some B2. I have appointment with cardo tomorrow.

Dap1948 Did you know B1 would increase BP

Kia17 profile image
Kia17 in reply toGcf51

B1 can reduce Nitric Oxide and thus increases the blood pressure. In opposite, B2 can increase the Nitric Oxide and eventually reduces the blood pressure.

Gcf51 profile image
Gcf51 in reply toKia17

B3 can also lower BP

Kia17 profile image
Kia17 in reply toGcf51

Interesting.

Gcf51 profile image
Gcf51

+* 6/28 day 42 of taking B1 as TTDF: Decided to go a 3rd day without, this morning near perfect, got about 7.2hr sleep (normal for me, about 7hr). Today my coffee sink test; my timer only was at 25 sec when I started spilling my coffee.

Yesterday, I took my Blood Pressure (higher than my normal which is high); I searched net and found:

“One of the other side effects of vitamin B overdose is hypertension or hypotension. When the amount of vitamin B1*, also known as thiamine exceeds the normal levels in the body, it can cause hypertension or high blood pressure. Similarly, when high doses of vitamin B2, usually referred to as riboflavin is taken, it can cause hypotension or low blood pressure.” medicoverhospitals.in/artic...

So, I must be overdosed on B1*… I went out and brought some B2 and took 100mg. This morning BP is still high. I have a scheduled appointment with a Cardiologist** today. One of the reasons I take a B-Complex is I hope to not get B vitamins too far out of balance. I took a B3 500mg time release this morning and took a 100mg B2 with my stuff with food, Also Took B12. At this time, I have no dose that works for me without overdosing to fall back on. I should have my mg scale tomorrow – I may restart at a much lower dose (maybe as low as 5mg).

*B1 as in TTDF… Basically @Dap1948 writes in her book, TTDF lacks research and it is not possible to advise on its use at this time. She warned me day 3, I was overdosing. I feel TTDF is unique and maybe shouldn’t be considered as a high dose B1 alternative. I understand, Roy, that used to be on this forum dislikes TTDF.

**My GP is reluctant to increase my BP meds. Today is a follow up on a referral to a Cardiologist.

Gcf51 profile image
Gcf51 in reply toGcf51

I did not write an update for today 6/29. I sent a message to my GP:

I am on a break from TTDF. I am concerned about my Blood Pressure. Tomorrow will be 5days without taking. The blood drawn for day 3's Blood test for B1 was after taking TTDF that morning. The info on the test says blood draw for test should be before taking supplements for B1.

Would you schedule a B1 test for tomorrow? Hopefully, it won’t be nearly 2 weeks to get results this time.

FYI – I am having Great results on my PD symptoms with TTDF. I have left phone messages and sent emails to my MS at AU – I have not heard from her. My next appointment with her is July 14th.

I am now set for a full blood work blood draw in morning.

This morning my BP was still elevated!

And, I maybe back to my to where I was 43 days ago, except maybe BP. I respond well to C/L and my PD symptoms at the time of starting TTDF were not that bad. I say except BP, I don't take my BP often and really don't know what, it was 43 days ago.

Gcf51 profile image
Gcf51

My opinion (needs researched to prove or disapprove): I feel the problem with TTDF is when TTDF is adsorbed in goes straight into your Blood Cells to be transported to your body and across the BBB. Even thought TTDF is water soluble, once inside you cells it is there and any excess will not be flushed out in your urine as most B vitamins are. Therefore, not a good candidate for High Dose B1.

In true Brainstorming there needs to be feedback, I am not getting a lot of feedback.

dadcor profile image
dadcor

I think you are on the right track. Keep trying.. I have very similar results with TTDF, yet my protocol is a bit different.

Gcf51 profile image
Gcf51

Someone wrote they were taking 3 50mg caps of ALLITHIAMINE.

I replied: ALLITHIAMINE is what i am using. I calculated 33.3 mg of B1 in 50mg of TTDF. Everybody maybe a little different. Unfortunately for me 50mg is too much. If you can take 3 and not have high blood pressure Great!!!

Godiv profile image
Godiv in reply toGcf51

Gcf51, Can you break the capsules to get a smaller dose? So you’re thinking that a single 50 mg is too much for you? I thought I read on Amazon that somebody opened the capsule. but they said it was incredibly horrible tasting.

Gcf51 profile image
Gcf51 in reply toGodiv

I don't break, contents taste awful. I cut a hole in one end of the TTDF cap. I put equal amounts in a size 00 empty cap. They are nowhere near full. The cap is to get pass my taste buds. I have a scale ordered with expected delivery of tomorrow. Might try 10mg in 5 caps. The hardness part has putting the caps together. I also ordered empty caps with a selling point easy to put together.

Godiv profile image
Godiv in reply toGcf51

Oh my gosh. They must indeed taste absolutely awful. Somethings are meant not to be released ha ha. But you thought of the perfect way around it. That’s great. Sometimes I wish supplement companies and even pharmacies with medications would start with lower dosages. But I guess they base it on some kind of average person size or something. I bought 50 mg but now I’m wondering if I should prepare to make my own also. I mean, measure it out myself. It must be pretty potent! Is it always seems so much safer to start off small. I hope you get your supplies very soon so you can restart.

Gcf51 profile image
Gcf51 in reply toGodiv

I know of one other that is at 3 50mg TTFD with no problems.

Gcf51 profile image
Gcf51

I got the scale. It’s not as easy and straightforward as I hoped. Contents of cap not 50mg, it’s more like 227mg, therefore the TTDF was blended with something to fill the cap. The best I can determine if I want 10mg of TTFD, I would need to measure into an empty cap 45.4mg.

I might be glad I ordered the stuff from Amazon - wish I could read Japanese.

Godiv profile image
Godiv in reply toGcf51

Oh no! Oh yeah I see what you mean. I can’t do the math LOL, so I’m so glad you’re figuring it out. Is it worth trying another manufacturers? Not that there are many of them out there, but I just wondered if a slightly different mixture would help. Like the fillers might make a difference somehow. I’m sorry I have no idea what I’m talking about! But you’re getting there. You’re figuring it out for sure.

Gcf51 profile image
Gcf51

+* Day 44, 6/30/22, of taking TTFD: 5th day of none, BP was near my normal this morning. (I wish my GP would increase my BP meds), Planning to make 4 caps today of 1/4th of 50 mg, Coffee sink test 19sec.

Had blood drawn for a battery of test this morning, I don't think the VA does B1 in house, so it may take a while.

Gcf51 profile image
Gcf51

+* 7/2/22 Day 46 of taking TTFD: 1/4 of 50mg cap, Sink coffee test: 18sec, sleep last night: 6.8hr, Feel: Good.

Yesterday, I finally got my GP to increase my BP meds. This morning I took the higher of my 1/4 cap of TTFD*. The dance is tonight and I want to feel my best.

* healthunlocked.com/cure-par...

Point of interest: healthunlocked.com/cure-par...

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