Day 17 of taking TTDF: I feel Great, Almost no symptoms of PD only slight tremor, but did not spill my coffee. Sleep: 6hr 55min. I will post a comment later and add a link to it later (caution be aware of my warning concerning posting and reading on HU)
The thiamine tetrahydrofurfuryl disulfide (TTFD) is a derivative of thiamine with higher bioavailability and solubility than thiamine and has been widely applied to health maintenance and disease therapy.
+* I sent this to my GP at the VA edited (normal range of B1 blood test is 8 - 30), He is concerned about the 260 on mine.
There is very little info on B1 as TTDF available.
B1 as HCL any unused is quickly flush into toilet. but does not cross BBB.
B1 as TTDF is also water soluble, but is supposed to be 100% absorbed and passes quickly into cells. I don't known if cells will continue to take in the B1 till overdosed or whether excess will be flushed out.
I can not find any info on half life. I don't know if consumed, stored in cells or is there a half life (as I understand B1 is required for the body to make .energy, but it also is reused. B1 is also required to shield (jacket) nerves to reduce loss of electric charge).
I understand most processed foods are fortified with B1 probably as HCL, with rise of neurological diseases it might be wise if at least a portion of the fortified be B1 be as TTDF. Till the question of what happens to the unused is answered probably just some as TTDF and rest as HCL.
My test results of 260 of sample drawn on my 3rd of TTDF is disturbing, I wonder how high it got in the 10 days that I took before taking a break. I wonder where it is now at 1 every other day.
Reply.
He is very good at replying (usually within 45 minutes). It being Sunday probably by 10 Monday morning. Note on VA messaging there is no Bold option..
I intend on editing, adding for today and making clearer, when each day starts. A post is not like replies or comments there's no bold, no italics and no underline. I guess will try to go back to basic text writing and see if that works. I am trying to keep all exterior links to HU not go to "page not found".
I took it daily for five days. I wonder if this is why my anxiety and pain are high. Must take a break and try again in a few days on alternate days...very strong
+* Update 20 days of taking TTDF (Edited 6/7/22 12:30pm est)
A comment I made on my lost data post:
@Gioc TTDF has been shown to be 100% absorbed by analysis of human urine and readily crosses the BBB. My blood test from 3rd day showed 260 (B1) (normal range of 8 -30). A major side effect for me was worsened of cotton mouth that I notice after my full dose Botox injections for drooling a mouth before trying TTDF (first time was half dose). I do have a funky taste in my mouth (probably worsened by cotton mouth) that is not unlike the awful taste of a little of the contents of a TTDF cap. I have stopped my med that is suppose to help me hold my pee because one of listed side effects is dry mouth. Hopefully, I won't need taking TTDF by the time the Botox wears off (next schedule Botox 7/14 at appointment with MS). I have reduced in 2 steps my C/L reduced from 2-1/2 twice daily to 1-1/2 twice daily. as of today (6/7). I feel Great with little to none symptoms of PD. I have a little tremor when I am nervous which has been normal for me all my life. I am going to copy/paste as a comment on another post.
Added:Supposedly TTDF causes bad breath (I have now ask 6 people (nothing they notice, I have not had a chance to give a lady a Taste of my tongue ) 😪 , Energy: Still high, Sleep: Better but room for improvement and lack of is NOT causing me any problems, today no TTDF, I do believe every other day might be too much for me (I want to try 1/3 a day, but have not ordered a kit for making caps),
It is believed there will be no cure for Alzheimer's because of spongy brains, but who knows what may the remains of a healthy brain can do, supposedly we only use a faction of. With Parkinson's there are indications, cells are there, just dormant. I do believe with the increase of neurological diseases adding a fraction of TTDF to the B1 being used to fortify processed foods would be a good idea, PTL 🙏🙏🙏
Last ADD: 6/7/22 8:23pm...
n1, non-placebo, of self-mediated human Guinea pig (May have a Bad Doctor, but at least the doctor is touch with patient's Body)
I am not a doctor, Please consult your doctor. My GP at the VA wrote in mail letter B1 Elevated STOP, Please inform your doctor at AU. My only reply from AU was an email from a nurse of things to try for Dry Mouth with no mention of TTDF that was on my phone message. I do need to email my Doctor a new link (the one I email takes you to "page not found")
*+ 6/8/22 Day 21 (3wks) of taking TTDF: C/L: (I will determine) Dang the lost data, TTDF: (Will determine) last date I can find 6/2 no TTDF so No TTDF today, all I marked on note sheet was “6am morn stuff with indication I took antibiotic, just took TTDF off shelf again for in morning, Took antibiotic and marked on sheet. Mood: I believe mania under control, Mosquitoes: there’s currently a new larger variety outside (I have killed 3 that was tasting my blood) none with any or much blood (that I could see). Sleep: I got out of bed last night, because I could not sleep (toothache), Ate stuff, took stuff, finally felt like I could sleep and went back to bed 3:10am, don't remember taking long to fall asleep maybe a little more than 2-1/2hr, Bowel: took 2 senna-2 tonight. C/L 99% sure I missed morning dose with no off time.
An email I sent after I called my MS’s office and leaving a message for her that I am doing great on (B1 as TTDF), I sent an email shortly after (edited):
*+{Dr XXXXX,
I am doing great on TTDF.
In a letter with my B1 test results (day 3 blood sample), my GP at VA wrote, “Your blood level is Elevated, Please Stop! Keep your doctor at AU informed!” (Not exact words).
Not only would my experience be a good "thesis for a Med Student", I also think "AU should inquire into funding to further research TTDF based on my experience.
HU (HealthUnlocked) replied to a message I sent via HU’s contact us, that linked post which takes you to “Oops, Page not Found”, HU replied, the post may have been deleted due to violation of policy, HU sent a link to forum guidelines. I reread and interrupt, “No Negative Comments about people, beliefs or politics”); I was guilty.
Anyway, I lost a few days of my "n1, non-placebo, ongoing experiment, of self-medicated human guinea pig, with a bad doctor" (not you, I will say, the bad doctor is in touch with the body of patient ); data.
Have a Great Day
XXXXXXXXX
706-xxxxxxxxx
Hope to hear from you soon (next scheduled appointment 7/14/22)
PS: Appetite: Good, I think I am gaining some needed weight. Sleep: not as well as I would like. Latest Update: Will be by me (Gcf51) and should be near end of post linked.}
*+{She replied, “It seems you are very excited! Sorry to hear you have trouble sleeping. You have a psychiatrist at the VA, right? Did you tell him about these symptoms of insomnia and hypomanic mood?}
I replied to her:
*+{Dr. XXXXX,
Excited is saying it mildly. (The time, I messaged him that I was running out of Divalproex (which I take as needed) he refilled at half the dose to take nightly before bed. Anyway, the one reminding went in toilet today and the new unopened bottle is on my shelf for taking tonight (250mg. it's dated 11/6/21), depending on how I sleep tonight and feel in morning, I might take for a few nights.
I missed a scheduled appointment with him today. He called because I missed and asked how I was, I replied Great. He stated Good, someone would be calling me shortly to reschedule.
I have no excuse other than I am busy with my n1 study/trial/experience.
I closed my eyes today for few "I remember my proofreader texting me not now", must have been a dream, my phone's timer indicated 26min of shut eye.
Have a Great Day.
Thanks, for the speedy reply, PTL
xxxxxxx}
+*Scroll dn to see latest update (if any), up to see previous
+* 6/9/22, Day 22 of Taking TTDF – I feel remarkably well after a very miserable night!! Less than 1-1/2hr of Sleep.
I took 2tab 250mg of divalproex (mood stabilizer(b)), 4tab 25mg Sleep-Aid (Benadryl), and extra 5mg tab Melatonin, 2tab of Senna-S (lax), plus reg bed-time stuff (a)
Woke startled a little before 11 (don’t recall by what but I remember dreaming that my daughter and I were sitting on a bench texting each other, restless leg bad couldn’t stay in bed supposedly both Benadryl and melatonin worsens and C/L helps (so I took one) which I believe I missed a dose of yesterday, ate some ice-cream and a little Debbie nutty buddy pack, took a shower that seems to help with urges to rum spots, decided not to take TTDF with morning stuff so shelf the stuff to take occasional, tried a few times to back to sleep,
Held full cup (3/8 inch below rim) about 16 inches from me, over sink for 8.3 sec before almost spilling.
I didn’t take TTDF this morning and put back with morning stuff for tomorrow, C/L: 1-1/2, I threw up about a ½ cup of coffee this morning, I feel the Lax is working if I don’t go stuffing by noon I might take some more, morning stuff included an antibiotic (4 times a day) for by bad tooth, gargled and brushed my teeth with iodized sea salt (seems to be better than sensitive tooth paste, plus seems to be better for my dry/cotton mouth than anything else),
(a) Stuff - Trying to say stuff with little Humor about some serious STUFF without using stuffing vulgar words.
(b) See day 21 reply to MS, I hope she opened the link in email to her.
Someone on another forum asked, Can Parkinson's cause confusion & not remembering how to do things?
They now have 12 comments including mine, I have always been scatterbrained has PD made it worst. I think so. I think God and I are making some real progress.
I have posted on that forum links to my posts, some now dead-ends.
I had something I wanted to do and did not want the fear of needing to go stuffing. I took little after 2 when I got back. Besides, might be better to drink plenty of liquids and stay active, Problem is I need to eat before bedtime and I don’t want to use an enema. If bowel doesn’t move soon, I will have to use the enema. I don’t understand how taking TTDF could cause constipation. With all this new found energy, how could I be constipated?
+* 6/12 Day 25 of taking TTDF(*): Today I took my attempt at 1/3rd cap(1), C/L: 2 twice a day(2), Sleep: less than 3.1 hr much better than none the day before(3), Appetite: maybe too good. Mood: Mania seems to controlled at an acceptable level, Energy: good, Bowel: not my normal(4)
+* Brainstorming: In the best brainstorming no comment is off the table regardless of how ridiculous it is. I have enjoyed my time on HU. I now have a file on computer C:Documents/Brainstorming/TTDF, I might lose your comments but at least I have a backup of most of mine.
- It was on HU that I first heard of TTDF^, I ordered shortly thereafter. I have seen comments: I just ordered, I have not received my order, never heard of it, etc. Wouldn’t it be awesome, if HU went down in history as being responsible for a life changing (Brainstorming cluster of PwP) for PwP as is the tear jerking story of children in a hospital ward comatose being given a shot of insulin and within hours were running around playing,
- Dap1948 Expresses in her book; Allithiamine (TTDF) which occurs naturally in garlic is synthetic and has yet been tested, it is not possible to advise on use.
- Maybe funding for research will soon be provided and a safe treatment plan developed.
- I am not a doctor, Please consult your doctor. Do your Research.
^ I replied, What is TTDF? A Google search comes up with nothing. And, later Thiamine Tetrahydrofurfuryl Disulfide (TTDF) very little useful to this barefoot county-boy. And yet even later while searching something: I see a HU post me, in the results (I hope it wasn’t to a deleted post).
* Day 24 was never posted I had problems that I believe due to taking Aleve**.
** Aleve: I believed worsens my PD. I first notice because of occurrence drunk-walking after taking Aleve. Even though most references indicate is ok for PwP to take I found (Naproxen & Aleve are the same) bmj.com/content/311/7002/422.3 .
(1) I ended up using an old razor blade to cut a hole in end of a cap and trying to put equal amounts in 3 caps (I did have to pour a little from the most in the lowest. The picture is more to show how much 1/3rd of 50mg TTDF is, than to show how equal I made. My temporary stand would not allow me to shake which would show better than pic indicates. The size 00 cap is meant to get the TTDF pass my taste buds, I watched a video of a cap filling kit, the kit is meant to fill caps and not put equal amounts in. the Kit wound have been a waste of my money and was a waste of my time.
(2) I decided I was playing with too many variables and wet back to my dose (3 month before TTDF), I was discouraged that the increase meant my PD was getting worst,
If I can convince my MS (xxxxxx, professor at Augusta University), Would you support research to develop a "safe treatment" for Parkinson's and possible addition of a small portion of B1 as TTDF to eliminate Parkinson's in the developed world.
My experience (my HU links will take you to near target should start with (+* 6/12 Day 25 of taking TTDF+): healthunlocked.com/cure-par...
I have sent a message to TeamFox which may have not have been best contact.
add:
A lot of High Dose B1ers don't like TTDF. In my opinion they figured they were taking 0.5-3000 g of B1 as HCL and figured they would pop a handful of TTDF. I forwarded to my MS and plan to call office soon and leave her a message,
The only symptoms of PD, I am currently having is tremor when excited which is too often.
Maybe I should take a mood stabilizer pill for mania, but I kind of like mania.
Maybe, safe is: (needs to be researched) I am not a doctor consult your's!!!!
a) Start with recommended dose of TTDF.
b) If you feel anxiety, jittery, mania, etc. take a break!!!
c) After a reasonable period of time (1 week maybe very iffy); a) increase your dose b) start back at a reduced dose. Note: TTDF taste awful with a worst aftertaste lasting more than an hour later. I have divided in half and a third. I put in empty 00 caps. My objective is to get pass my taste buds.
d) Then and only then try reducing other B1's (after thought: Those taking high dose B1 may need to reduce dose when/before starting TTDF)
e) Then try reducing other meds (supplements) one at a time.
Be patient your PD didn't progress over night, don't expect relief of your symptoms to happen over night.
The scale is a nice cute neat little scale, unfortunately I didn't do a very good job of researching. It would be great for measuring grams (0.05 gram), but I need a scale to measure mg. There is a problem with it too, 10 50mg caps of TTDF weigh 2.78 g and should be 5.00 (plus some for weight of caps).
+* 6/14 day 27 of TTDF, TTDF: took my last 1/3 cap(1), C/L: 2 twice a day, Tremor: acceptable(2), Bowel: on the right track(3), Mood: Good(4), Pain: acceptable(5)
(1) 1/3 cap: I will decide today if next caps (I make are 1/3 or ½), I have ordered a scale, on my shopping list is an Exacto knife for a cutting hole in end of caps (should be easier than using and old dull razor blade, gut feeling correct dose for me will be between 1/3 and 1/2,
(2) Tremor acceptable: I did not spill by coffee, I question if I should go back to C/L 2-1/2 twice a day (the dose I had increased to approximately 1month prior to starting TTDF), yesterday I got excited and did have tremor (later after calming down acceptable),
(3) Bowel: yesterday I had a good bowel movement, I question if my problem stems from not trying when first feel I might need to defecate, today I did take fiber, I have not yet today (my normal is during 2nd cup of coffee),
(4) Mood Good, yesterday I got excited and mania did show its ugly head, I did not take mood stabilizer,
(5) Pain acceptable: my bad neck was hurting this morning considered muscle relaxer but took Advil/Tylenol due to tooth I believe I will have to have pull (Sunday I finished antibiotic, jaw is still swollen, tooth is sweet sensitive and it is painful to eat on that side),
Last note: I believe I am making headway on my grammar and organization, PTL
I believe my sense of smell is improving; I go outside and smell flowers. All I can say about taste is everything I like taste Goood.... Too good... it's harder to resist a 2nd serving.
"The potential toxicity of TTFD is therefore similar to that of niacinamide, a vitamin B3 supplement (with an oral LD50 of 2,500mg/kg in mice)." it doesn't say whether the mice were climbing the walks or not.
"We found that TTFD supplementation did not affect the growth, dietary, behaviors, body compositions, and biochemistries for the whole duration of the study. Actually, TTFD has higher bioavailability and distribution than thiamine in a variety of organs, especially in the muscle, liver, kidney, and heart. Histological observation which can reveal pathological changes with the long-term and high-dose supplementation demonstrated that the TTFD did not cause or induce organ abnormalities.”
+* According to this link, my test results should have been available in 4-6 days. My letter was not written for 11 days after. I do not know who does the test for the VA. The link also states: Blood samples should be collected before breakfast in the morning and prior to any medication. They took my sample a little less than 5 hours after taking TTFD. It would be interesting to see a curve of results for TTDF compared to other forms of B1 plotted for periods of time. If what I speculate your blood cells carries BI into your cells, the same way it carries nutrients to and waste from your cells and whole blood is responsible for crossing the BBB. Research needed. My results were 9 times the average of the suggested midrange of the test. I had requested the test for a baseline, not realizing levels would rise so quickly.
+* 6/14 day 28 (4wks) of TTDF: I think I have found my happy place :-)I took 1 250mg Divalproex(1), 1 5mg Lithium Orotate(2), 4 133mg Mag glycinate(3) last night.
This morning 1/2 50mg TTDF, 2 C/L (twice daily), Sleep: less than 5.8hr (4), Tremor: very slight,
1) Mood stabilizer that I was prescribed every night. I have been taking as needed.
2) I tried taking for PD, I quit at least 6 weeks ago. Lithium is also a mood stabilizer.
3) I use powder, but at last order was sold-out, I ordered caps and just ran out of powder; I did double my dose because I have had cramps; I have some cell salts on-order. What was recommended in private message was sold-out at Amazon. The cell salts I ordered are not as recommended (tissue salts).
4) I recalled trying for some time to go to sleep when I woke up earlier this morning. I got up when I realized mood stabilizer was not put in bed time stuff.
Note: I have been using a bootlegged copy of Word 2007 to check spelling. I had added ProWrite, but it disabled Word’s spell check and our internet connection was too slow. I still use online-on their site to proof read, some stuff. I disabled the chrome extension because (it or some hacker) was adding stuff to my Facebook posts, which someone asked what is that and I went back and deleted the added stuff.
+* Duh... Last night while looking for my Lithium Orotate, I found a bottle of B Complex in by cabinet of stuff that I had quit. It occurred to me, I should look in my stuff I take in morning and sure enough not there. Wonder how long ago it got moved. Last time I can think I had the bottle in my hand was after stopping my 100mg B1 and trying to answer how much B1 as HCL I was still taking. Anyway (at 2:54pm 6/15) I let a 2,500 mcg B12 dissolve under my tongue and took a B Complex.
In an attempt to find my original dose of C/L, I found 2-1/2 tab twice a day. I am trying to stabilize on a wrong dose of C/L, today back to original dose. Maybe, I can get back to no symptoms of PD.
1 week in I first mention: Processed food are fortified with B1 (thiamine HCL is the most common which doesn’t cross the BBB). With the rise of neurological diseases, they should fortify with TTFD (maybe as a small percent of total B1 until more research has bee done). Note: For Dr Sinclair, I stopped after a couple days of metformin because brain fog was much worst, maybe you should research TTDF and add to your stack. (Maybe some of you have a means of contacting him).
Gc. I dont know if im replying in the right place as you are journaling your experience with TTFD. Only to say im taking it on alternate days and my energy is very good. I sleep like a baby. Today nearly 9 hrs but i also take melatonin so tha might be helping. I read somewhere you have a tooth ache. I make a tincture of plantain (plantago officinalis i think)by infusing the chopped leaves with cheap vodka, well packed, in a closed jar and shaking for a couple of weeks. When the liquid is ready i sieve it onto another jar. Then i na plastic bottle i mix a fifth of this tincture with boiled cold water and add 5 drops of mint essencial oil. Keep the rest of the tincture to make more of this mouthwash that will help to heal and draw the infection. Rinse your mouth with this. Hope this helps. You probably will find plantain at your doorstep as it grows everywhere. Good luck ! Let me know if you tried it.
I take 1 5mg tab melatonin at bedtime, have been for years. I have trouble falling asleep, must take a shower before bed. If not, I might itch; also have to have white noise. I slept 5.75hr. I woke up early started thinking about, I need to check how much C/L, I was taking before I started TTDF and stayed up. At the time I think I could have fell back to sleep easily. Lack of sleep doesn’t affect my energy. Just think, I need more for my body to repair.
Glad your experience with TTDF is going well. What brand do you have?
I believe I might be able to keep the tooth. When I used all the antibiotic, I start OptiZinc which is suppose to help fight off infection and gargling with sea salt. Jaw is now only slightly swollen. I haven’t taken anything for pain today.
I took 1 250mg Divalproex, 1 5mg Lithium Orotate, 6 133mg Mag glycinate last night.
This morning 1/2 50mg TTDF, 2-1/2* C/L (twice daily), Sleep: 5.75hr, Tremor: very slight, Bowel: my normal, Energy: great, Dry mouth: Still have cotton mouth**
* Looked back at records 2-1/2 was where I was when I started TTDF.
** I believe cotton moth is due to Botox injections a month before starting TTDF.
6/19/22: Yesterday, I took 3-1/2 C/L in afternoon in hopes of being my best for dance. At dance I did have a slight tremor. I had a great time at the dance. I plan to leave about 9 this morning for a trip to Atlanta, a 2hr 30min drive one way. Bed time: 6.2hr (I did get up and take a muscle relaxer for my stuff neck, I don’t recall any problems falling asleep). Digestive track: (I am eating more, I had 2 bowel movements yesterday). Note: I have always responded well to C/L.
+* 6/20/22 day 34 of taking TTDF: Oops… is 34 right… That’s what excel spreadsheet says.
Not a lot to report, still at 16.65mg B1 as 1/2 of 50mg TTDF, Digestive system better than my normal (I’m eating more and using restroom twice a day). I survived Atlanta traffic (even the 10 miles at 5 mph).
My theory: TTDF has been shown to be 100% absorbed by analysis of human urine. Does this mean all was absorbed by your body, no? Any bacteria in gut may have absorbed some and their waste must also be processed by your body (therefore best taken on empty). TTDF crosses the BBB. Basically only the first T makes it (the TDF must be processed as waste in your liver). My assumption is your whole blood cells has been absorbed in abundance the T. Your whole blood cells (with abundant T) are responsible for carrying T across your BBB.
That said: We all have some bipolar where you fall on the normal healthy brain scale classifies you as bipolar, in my case I fall (trend) toward bipolar, I had problems with mania and had to restart my mood stabilizer.
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