added 6/25/23 I have stopped a 3rd time because I had return of symptoms (worsening of tremor) with none of my normal return of symptoms (anxiety, lose of sleep, constipation). I took a break and started back on on 1000mg of hcl. I was of 1100mg. Tremor has not gotten any better. Their seems to be a never ending cycle of return of symptoms at yet another lower dose.
I have negative feelings about mega dosing Thiamin HCL (B1), {Just to hope that some of the Thiamin gets in your brain cells (100mg is 6,667% of the RDA, It is suggested that we are suppose to take 200 times that and, the 200mg I take makes no difference)}. According to RDA 25mg of B1 is more than 2000% of what you need to function.
Thiamine {tetrahydrofurfury disulfide (TTFD/ allithiamine), on the other-hand has been shown to increase B1 in brain cells and I felt the difference in one 50mg dose. The TFD component which is shed when entering your cells does require methylation, but I take way more than 50mg of methyl donors. So, I ask: How is the HCL component you take disposed of? I am not a doctor: It’s probably just a little additional stomach acid.
TTFD is a form of thiamine that is water-soluble, and much more difficult to find in vitamin shops. Brand names include Lipothiamine, Allithiamane, Adventan, Alinamin-F, Benlipoid, Bevitol Lipophil, Judolor. my TTFD comes in 50 mg capsules. And the primary side effect is you smell like garlic after taking it. (Well, I haven’t smelled my breath)
And, Thiamine tetrahydrofurfuryl disulfide (TTFD) is the synthetic counterpart of allithiamine, occurring naturally in garlic. Allithiamine was discovered in Japan in 1951... its metabolic effect was (is) much more powerful than the thiamine (assume they mean HCL and wonder how much more powerful). pubmed.ncbi.nlm.nih.gov/153....
excellent Video on TTFD (doesn’t work as I expected - I had to page dn) healthunlocked.com/cure-par... ***If it increases dopamine in brain is it a cure????
You may ask, what difference: It’s nice to be able to brush my teeth without my hand doing something crazy. And yes, I am still taking the 200 mg of Thiamin HCL.
Edit 3/24/23, Removed note and Added a new one — I had to stop TTFD twice, once because of HBP and a second time because I could not figure out how to reduce my dose of the Awful tasting stuff that has an even worst after taste. With exercise and med change, my BP is now 20 points lower and a little anxiety does throw me for a loop; and I found a source for ALINAMIN F (Fursultiamine Hydrochloride). 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 dividing into lower doses. To the best of my knowledge, Fursultiamine Hydrochloride is only available from Japan and it is another name for Please don’t confuse Fursultiamine (which is another name for TTFD) with ALINAMIN. For more info, healthunlocked.com/cure-par....
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Thiamine is an important B vitamin that plays a vital role in production of energy from food consumed. It also improves normal neuronal activity. Come on Mitochondria make some ATP, the energy is invigorating… Thiamine, increase my nerve shielding too…
Yes, having problems going to sleep, maybe the extra energy, can't seem to stop random/rapid thoughts. I took my previous dose some 16 hours ago so should not be the TTFD. Just took 5mg melatonin, hopefully it will shut the thoughts down.
IMO should be split 4/6 times a day. Even just 250 mg b1 hcl. So unnecessary overdose is avoided and the availability over time that is what is needed given the high speed at which it is expelled from the body is prolonged.
The TTFD is more absorbed into cells (as I understand). It is water soluble, so excess should still be flushed out. From my experience (at 50mg) taking 2-3 grams would be way too much of TTFD, even though by what I have read it would be safe to take.
I don’t mean that it’s unsafe when I talk about an overdose. You have to find the dose which improves symptoms in the B1 therapy and if you take too high a dose for you it can make symptoms worsen. We refer to this as overdosing. All in my book amazon.co.uk/Parkinsons-The...
I’m seen at the VA too . They’re restricted in ordering labs to some extent but I did get a T4, B12 and C Reactive Protein yesterday (for “justified” reasons, outside of PD).
If you get B1 labs 🧪 I’d be surprised 😲 - please report!
Did get results about much later date. My blood test from day 3 of 1--50mg of a cap a day was 260 with mid-range of normal results being 23, my results 11.3 fold above mid range.
Sublingual doses are very small too and go straight into the bloodstream. Most people take about 50mg a day or one sublingual 100mg tablet every other day. I have yet to receive reports from people with Parkinson’s on TTFD that they have found any success. Whereas I daily receive success reports from people on HCL and sublingual B1. I cover all this in my book “Parkinson’s and the B1 Therapy”. Be careful you don’t overdose!
How many people do you know who have tried TTFD? Have you tried it?
I believe you'll tend to hear more success stories with HCL because people are more motivated to try Dr. C's specified protocol, not because other forms were found ineffective. I have yet to notice anyone stating that TTFD didn't work for them while a high dose of B1 HCL worked better for their PD.
Of all PWP who vocally championed B! HDT, I know RoyProp was one who initially benefited from Benfotiamine and TTFD, so you might want to avoid stating yet to "have found any success."
"Thiamine could be converted to three phosphorylated forms, thiamine monophosphate (TMP), thiamine pyrophosphate (TPP), and thiamine triphosphate (TTP), after intestinal absorption, but the rate-limiting transport system for thiamine absorption causes a bioavailability issue ...
The derivative, TTFD, is synthesized by attaching a mercaptan to the sulfur atom of the thiazolium ring. The mercaptan, left outside the cell membrane as the complete molecule, is hydrolyzed to deliver thiamine into the cell and has been well studied for its metabolic breakdown [17]. This transit through cell membranes provides a high concentration of the vitamin in the cell and the reaction does not require a transport system to assist in intracellular absorption of thiamine [18]. The bioavailability is significantly higher than thiamine salt in a variety of organs."
If you're monitoring thousands of patients, as a scientist it would be best to limit variables as much as possible and I'm sure he was more familiar with B1 hcl for mechanisms and side effects.
I experimented with it but didn't notice any benefit over what I was already taking. I also remember noticing more negative reviews on the form compared to others, so I don't see a reason to pursue that form over the others.
One reason people need to take high doses of B1 when using the ORAL version of the supplement is that so much gets lost going through the gastrointestinal system. This doesn’t apply with injections or sublingual.
Sorry if I sounded abrupt. The information is on highdosethiamine website and in my book. The nutritionist Elliot Overton talks about it too. But there may be people who read your post who weren’t aware of the need to balance B1 with magnesium and indeed B-complex, and so you will have spread the information to others which is always good.
Dr Costantini gave his patients 375mg twice weekly. I take about 120mg daily. Elliot Overton the nutritionist recommends 400mg plus daily… As you see, there’s no easy answer!
we were talking about magnesium. TTFD is a form of thiamine. I wouldn’t like to hazard a guess at equivalent dosage between TTFD and hydrochloride B1. TTFD is very strong and has people bouncing off the walls at very low doses. With the B1 therapy you have to find the right dose, as you probably know. More is not necessarily a good thing. One group member who tried TTFD couldn’t get it down to a low enough dose.
Golly, sorry, I totally misread, I didn't realise it was about magnesium, I think because the doses seemed quite low, I take at least 400mg a day. But thank you for your kind reply, and great work, I'm right this minute watching the youtube video of you and Elliot.
There needs to be a revolution in medicine, where doctors learn to know what they are doing .... like Elliot
In my case 20mg was approximately same as 1200mg hcl. There is no good way to get 20mg out of a 50mg cap. I had to quit TTFD due to High Blood Pressure.
Oh wow, high BP, I am the opposite, I have found I had to increase my TTFD , 50mg morning then evening, and my BP is getting better around 120/68, otherwise it floats between 130/75 and 160/80
I do believe my issues stems form mercury and or other toxic metals, and have found I can be very sensitive to some supplements, and every time I find I am sensitive then it has meant that I was deficient in that, and so had to slowly try to increase it. I can't supplement with glutathione as it gets depleted by toxic metals, and supplementing with it causes horrific symptoms, so I try and increase foods with glutathione but in small amounts but also supplement with precursors
No, I have only just added the morning dose, since running out of benfotiamine, but yeah I have been taking the evening ttfd for 6 months, no problem, but I have still been fatigued
Dr C used to explain that when neurons were dead they remained dead and therefore you had a reduced dopamine production and still need levodopa meds to replace the short fall. However B1 would stop further neuron death and save the dying neurons.
That’s exactly what I recall him saying- however, it still is just a claim (but one I am inclined to consider)! Placebo or not-the science is fascinating and it has no seriously known risks.
If thiamine is sufficiently potent that it can do what has been claimed, and if overdose can result in exacerbated symptoms, then it would be unwise to rule out that its use could accelerate PD progression in some cases.
I have a whole page in my book in a section entitled “the link between PD and thiamine” which includes quite a number of references. Here are two studies which link thiamine and dopamine…Onodera K, (1987). ‘Effects of decarboxylase inhibitors on muricidal suppression by L-dopa in thiamine deficient rats’
Lu’o’ng Kv, Nguyen LT (2013). The beneficial role of thiamine in Parkinson’s Disease’
Linking is not demonstrating causal effect. And there is a world of difference between thiamine deficiency, and the benefits of super-supplementation in those not deficient in thiamine
The muricidal ddci study is about thiamine deficiency - not the super supplementation of thiamine.
The Lu’o’ng Kv, Nguyen reference also relates to thiamine deficiency. However, its interesting in the context of the recent Zhittya trials since it indicates the potential benefit of angiogenesis in reducing PD symptoms. Watch this space.
Hello I was able to get your book through kindle unlimited. The HDT therapy seems so subjective and individual (no standards). My HWP has been taking 500mg oral HCL with no improvement. I hate to keep increasing vitamins when the improvements take a while and it seems like he is a guinea pig for non-traditional treatments. Plus the darn pills are so big!
However, many folks have had great success. Fatigue and pain are his worst symptoms. I am interested in the sublingual because the doses are lower. I wanted to let you know I found a thiamine HCI sublingual by BariMelts. It is only 12.5mg and more expensive than the brand mentioned in your book, but tastes better. amazon.com/BariMelts-Dissol...
I think this might be a good starting point, thank you for your advice on how to get sublinguals! Would you suggest increasing dose weekly or slower than that?
Thanks for your dedication and motivation to write the book to help others with PD.
I think these BariMelts might well just be a tablet that dissolves in the mouth, is swallowed and gets absorbed through the digestive tract like oral tablets. Superior Source is the only proven brand that we know is sublingual.Trialling is the only way to find the right dose until a research study shows us bio markers. Thiamine is very safe in high doses over long periods of time
Bought them online, super cheap less than $4 and an add-on for free shipping, makes me wonder if manufacturer not making anymore and they are selling off supply.
amazon.com/dp/B004X4WM8W?ps... has been $7 or less far as long as i have been checking. Superior Source responded to an email, there was no indication the product was being discontinued.
I have been taking a week, (1) 100mg - I am hopeful.
Mosquitoes have always loved me. There can be 10 people and I will be the first person to be swatting mosquitoes. I live a half mile across the river from Augusta GA. I was outside in shorts and a tee. Three landed on my legs and I killed them. So, I let a mosquito light on me, it few off and landed in another spot three times, before I killed it. If I do smell like garlic, I guess no one will be kissing on me unless they have been taking TTFD too...
You got me chuckling because I was the same. Mosquitos swarmed me in the midst of a crowd of people until I supplemented high-dose thiamine. For other people confused about why you're talking about mosquitoes -
How long have you supplemented 200mg consistently? Your thiamine-dependent enzymes may have been long lacking cofactors with severely compromised transport function. Heavy alcohol use or eating high refined carbs/sugar will also deplete B1, especially out of the brain. For reference, beriberi patients need a minimum of 100mg three times a day for many months to start recovering. Some people are also genetically compromised to absorb thiamine, such as in SLC19A3 gene.
I've also been taking a B complex and good multivitamins forever, so the idea of being deficient in any vitamin was hard to imagine. I'm glad you're responding to TTFD. The article below will explain why a high diffusion is needed in case of severe thiamine deficiency.
"The treatment of clinical manifestations of thiamine deficiency, especially WE is a medical emergency, and in patients in whom the disorder is suspected thiamine should be initiated immediately, either intravenously or intramuscularly, to ensure adequate absorption.58 Studies11,31,48 support several different regimens for patients with the disorder and those at risk of developing it.
Specifically, patients who have signs indicative of WE should be treated empirically with a minimum of 500mg thiamine hydrochloride per 100mL of normal saline, given by infusion over a period of 30 minutes, three times per day for 2 to 3 days. In cases where there is no response, supplementation may be discontinued after 2 to 3 days. In cases where an effective response is observed, 250mg thiamine should be given intravenously or intramuscularly daily for 3 to 5 days, or until clinical improvement ceases, and should be continued. Doses of thiamine below 250mg per day apparently may not restore vitamin status,59,60 improve clinical signs,61 or prevent death.62 In particular, when patients with WE are inappropriately treated with low doses of thiamine, the biochemical abnormalities caused by thiamine deficiency can lead to irreversible brain damage and death."
Precisely. I was mentioning the article to illustrate why you have not responded to long-term oral 200mg B1 hcl as would in other severe thiamine depleted patients with compromised transporter functions requiring a much higher dosage (parenteral no less) but you seem to be responding to TTFD that readily crosses the BBB without depending on transporters.
I really appreciate your sharing your personal experience. Mine is on order.
It would be nice if we were to create groups to try new things simultaneously. But I suppose communicating about it would contribute to placebo affect. But we could agree to start something and not communicate about it until the end of a set period and someone not participating, someone analytical like Park Bear, could question us. This is about a high school level science project so some may laugh at my idea but I think it has a little validity?
Update: 2 hours after taking my 4th dose of 50mg: I can feel them. Maye, they are goosebumps. I am excited or maybe my body is thanking me for giving it something it needed
Went to bed around 10, don't remember laying there any period of time. Got out of bed at 6:20. Took my morning meds. Holding my coffee cup rock steady. I feel rested.
Comment: Yesterday I notice my skin on my forearms looks a little like chicken skin (mini-goose bumps - light colored slightly raised spots). They don't feel like they are bumps. Why, I speculate, something being expelled from my body...??
I remember reading somewhere that analysis of human urine byproduct reveals TTFD is 100% absorbed.
Day 4 out to a good start...........
It is so effective, I have to question, do I have Parkinson's or did I have a B1 deficiency.
😀
I add judging from my reaction - I wouldn't recommend taking more than a 50mg dose.
Please excuse me... I'm so excited I can't stop editing/posting. Reminds me of DSMO - Stuff so absorbable, you can put a drop on your big toe and "with little or no delay" taste it in your mouth (major side effect bad breath).
Maybe, researchers need to attach TDF to more stuff
😀😀😀😀
DSMO, so absorbable you have to be careful what you mix with it, it will sucks contaminates in with it. The stuff in the movies, spy's mix with poison, put of a glass, someone picks up the glass and they fall over foaming at mouth.
I googled (dmso vs "tetrahydrofurfuryl disulfide") and got so many hits, but can't find one that says TDF is a component of DSMO....
TTDF was developed in Japan where/when/while Beriberi was a major problem – Did the researchers there have DSMO in mind. B1 treats Beriberi.
Again excuse me, I have an engineering degree and had major problems passing English courses.
I got stressed and started shaking. Do take more C/L or more TTDF. I chose C/L after all as I understand mega dosing B1, you must mega B1 for life (Oh well, could justify both choses with that).
Magnesium is in my stack... And is on my list of must have, Been there every since I read an article "Is it Parkinson's or Magnesium Deficiency" which was pretty near to when I was diagnosed with parkinsonism and later a Dat-Scan showed positive for PD.
I wonder if just adding more garlic to your diet works. It would be unadulterated and unprocessed so one would think it would be better than adding another supplement. Have you found any information related to allithiamine from food versus supplements?
Update Day 5… other things are stressful in my life (It’s not just that my PD was getting worst, which was very depressing).
About breath - Yesterday, I told my favorite dance partner to let me know if my breath was bad. Last night she didn't say anything. So, I asked at the end of night. She replied, not that I noticed and nothing offensive. All I ready can say, Mosquitoes don't love me anymore. Maybe, breath is not a problem a 50mg a day.
Yesterday, I noticed I now have a tendency to walk to left (probably because, I have had a tendency to walk to the right and my brain needs a little retraining). I had been told the reason I walked to the right was because my brain told my foot to take a 2 ft step but my foot moved slightly less.
I had a great time dancing last night. I had more energy and better balance & coordination. And, my shoulders didn’t ache like my arms had been holding up 50 lb weights for hours (90% better).
Odd… I have a bad neck. My neck pain has been much less (90% better) since starting TTDF. The odd part is my pain got worst shortly after taking my C/L for maybe 45 minutes (at one time I was using my neck pain as gauge for is I was taking enough C/L healthunlocked.com/cure-par....
Still wondering, did I have PD or a B1 deficiency, but at only day 5 and I cannot rule out placebo effect.
The problem(s) with being your own human guinea pig: Copied from Profile Bio.
- In PD the Placebo Effect is STRONG because thinking you feel better produces dopamine and too little dopamine (in your brain) is the reason you were prescribed Levodopa.
- I practice a little of what doesn’t kill you, makes you stronger. (On this Forum I don’t want to be the cause of someone else’s death – I don’t tell all).
- What to use as a gauge (Currently, how often does my right hand shake – presently almost only when I am trying hard to have a bowel movement)(one time neck pain, I got up to 12 Levodopa a day). (after taking TTDF, I am considering cutting cutting back)
- I try to stay with recommended dose, but sometimes there is no recommended safe dose.
- I don’t want to kill myself, but I look at those in a support group with advanced PD and think I don’t want to be like them (I don’t know how I will feel, if get that bad,)
- I don’t want to be a part of a clinical trial; I want to know, I am taking the real thing and not a placebo; I want to try more than one thing(s) at time.
- How many things do I try at the same time and for how long do you try each?
I feel, I am at where I was way before being diagnosed with Parkinsonism (6 months later PD was confirmed via DatScan).
I tried to cut back, but I am back to 2-1/2 C/L twice a day (I got stressed and had a little Tremor). Tremor isn’t nonexistent, but I can stop it. I can remember periods way back (more than 15 years ago) of spilling stuff.
I was diagnosed with Parkinsonism when I went to the ER due to Vertigo (I was rolling my fingers and it was very uncomfortable for me to stop it). I have not notice doing this since starting TTDF. Yesterday, I notice while wearing a fairly new pair of shoes a little vertigo (they are now in the trash).
I have x-rays showing I have a bad neck (neck pain improvement - 90% improved).
I understand TTDF is also good for fibromyalgia pain too (pain in general down 90%).
Fatigue – Energy level is very high (maybe too high).
I still need fiber for a good bowel movement.
Sleep for 2 days has been back to my normal of 5 to 6-1/2 hours.
Mosquitoes now hate me… A google search indicates B1 keeps insects away (I sure hope Deer Flies too). I will pay the cost of TTDF just for insect repellant…
Still wondering, did I have PD or a B1 deficiency, but at only day 6 and I cannot rule out placebo effect.
I was diagnosed as having Bipolar Tendencies 4 decades ago. After 6 months of being on as many as 4 antidepressants and 3 mood stabilizers (at the same time) I concluded if one of us (doctor and me) is Bipolar he is. Maybe, I am feeling too good and should take a mood stabilizer before I crash. I understand... why someone with Bipolar will go off meds - WHY KILL A GOOD THING.
Three different substances that should result in improvement have caused me vertigo. My theory at this point is that they are improving the neurological connection to my vestibular organs, and that improvement is causing vertigo. I am trying low doses of one of these substances (fish oil) and hope to be able to gradually increase my dose.
----
Feeling good is great! Unless something extreme is going on - like a manic episode - just enjoy it.
Are you aware that vertigo can be a sign of or result of autoimmunity?
involvement. Vertigo and other audiovestibular symptoms may be the first manifestation of an autoimmune disease and if correctly addressed could significantly contribute to early diagnosis of the underlying autoimmune disease. Early diagnosis of immune-related vertigo can lead to prompt initiation of targeted therapy
I’m sorry to hear that PB. My mom has vertigo that comes and goes. I still am albeit stubbornly holding on to that there could be an autoimmune component in addition to that acoustic trauma. This is relevant bc the autoimmunity can be a contributor to PD so it’s not isolated.
1 week of taking 50 mg of TTDF At one week could be a Placebo
(Probably longer than most will Read)
This being a week I will try to be more specific
Recommendation: Don’t take more than one 50mg dose. If anything try to somehow to take only half a cap for a couple days. I don’t know what it tastes like. The bottle doesn’t smell bad today (maybe because I have been taking). Since the RDA of B1 is only 1.1 mg daily, it is a shame you can’t buy a smaller dose. TTDF is water soluble. Analysis of human urine for the byproduct indicates it is 100% adsorbed. TTDF crosses the Blood Brain Barrier (thiamin HCL does not). The TFD component which is shed when entering your cells does require methylation. Both folate and vitamin B12 are the important regulators of DNA methylation .
When a Cure is found I believe it won't be just one thing - It may be something else in my stack working in conjunction with.
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.
Sorry, just noticed the product I am taking is labeled on the back (50mg of TTDF) - I have no idea of the weight of the TDF component, therefore no idea of how much B1.
Supposedly, TTDF gives you bad breath. I went to my daughter’s and she didn’t notice anything on day 3. On day 5 my dance partner, said “not that I noticed and nothing offensive” when I asked. I have not tried to kiss anybody. There are a few ladies, I dream of kissing, but have not and I doubt if they would let me. Mosquitoes now hate me. I just went outside and I did not see any of them flying around me. Deer flies still buzz my head (those things hurt and I tried not to let them land on me). No noseeums are not repelled.
I will try to be candid (list from a source, not my list) and this is what made so long.
Tremors (99% improvement): I have not caught myself rolling my fingers, but tremor is not nonexistent.
Rigidity: (90% improvement) My shoulders no longer feel like I have been holding 50lb weights for an hour.
Bradykinesia: I will have to wait for my Motion Specialist (MS) to determine, my next appointment is 7/14/22.
Vocal Symptoms: I have always stuttered and stumbled on my words (I do feel more confident and I am more talkative).
Postural Instability: I will have to wait for my Motion Specialist (MS) to determine, my next appointment is 7/14/22.
Walking or Gait Difficulties: I walked a mile yesterday with no problem.
Cognitive Changes: I feel my thinking is a lot clearer.
Depression and Anxiety: If anything, currently in a mania phase.
Disturbances in the sense of Smell: I think improved.
Eye & Vision Issues: Yesterday during my 20 minute fast walk, I did not wear by glasses and without my glasses I see 2 birds on a power line instead of one; when I got back I had cover one eye to read (problem reading only lasted 5-10 minutes). I intend to try to only wear when reading.
Fatigue: My energy is much higher
Gastrointestinal Issues: Still need fiber for a good bowel movement. My belief, this is cause by med of PD which I am still taking.
Lightheadedness: I never have had major problem and have had no occurrences since starting TTDF. I have had no Vertigo since starting TTDF.
Melanoma: My last visit with a specialist revealed no areas of concern. A couple of areas of dry skin (seborrheic dermatitis) cleared with medication but returned.
Pain: My bad neck hurts 90% less. With my increased energy I have noticed burning sensation on top of my thighs, I may have pinched a nerve in my back, I am standing, I am walking; if so 99.999999% improvement.
Psychosis: Never had this problem.
Sexual Concerns: Judging from my dreams greatly improved. Concern: What's Sex? LOL
Sleep Problems: TTDF has increase my energy and increased rapid/random thought and I wake early (-50%)
Sweating: I have not broken out in a heavy sweat since starting TTDF. I don’t seem to be as temperature sensitive.
Urinary Issues: I was on (MIRABEGRON 25MG SA TAB) because of problems of holding it, but I have had major dry mouth problems and quit because that was listed as a possible side effect.
Weight Loss: None since starting TTDF.
Levodopa and Carbidopa side effects.
Dizziness (see above)
Loss of appetite: Opposite since starting TTDF
Diarrhea (see above)
Dry mouth: I am having major problems which seem much worst with TTDF, but may be because I have Botox injections for drooling 6 weeks prior to starting, and botox probably won’t be wearing off any time soon.
Mouth and throat pain: None
Constipation: (see above)
Change in sense of taste: (see above)
Forgetfulness or confusion: (see above)
FYI-
I was diagnosed as having Bipolar Tendencies 4 decades ago. After 6 months of being on as many as 4 antidepressants and 3 mood stabilizers (at the same time) I concluded if one of us (doctor/me) is Bipolar he is. Maybe, I am feeling too good and should take a mood stabilizer before I crash. I understand fully... why someone with Bipolar will go off meds - WHY KILL A GOOD!!! I also, have kinfolk with Asperger's..
I opened a capsule and poured the contents into a spoon. There was not a lot of small grainy powder. I wet the tip my finger, touched the contents and put on my tongue; a not good taste but not totally repugnant either; and not completely unlike the odd taste in my mouth after taking 1 50mg for 8 days. The little bit on my finger probably exceeded the RDA of B1 (Not a very scientific test). I wonder what the half life of TTDF is? I understand B1 is recycled in body. What is consumption?
Maybe, I am saying dry mouth wrong; it’s more of a cotton mouth. I had this dry mouth before starting TTDF, so it’s not TTDF.
11:30pm. I had a dream. I was standing on the new roof that I just had install at my daughter’s house. Buckets of water were being thrown at me. I couldn’t see who was throwing the water. I was about to be washed off, when I woke up... My excessive dry mouth is mostly normal and I have the thought in my head “stop the 100mg of B1 HCL”. I got up and ate some ice cream. And, decided to write the dream down. My sinuses are draining and my lungs are a little congested. So, I took a NAC. I just heard the sound of a very short/light rain shower on my roof. I stepped outside the rain is very light. My bottle of 100mg B1 is now on the shelf of stuff I don’t take. I ate a little more ice cream. Its 12:50, I’m going brush my teeth and try to go back to sleep.
2:30 I woke up again. I don’t have a clock that I can see from my bed (too irritating if I have problems sleeping). Hungry, TTDF has defiantly increased my food consumption. Dang… my dry mouth is back. This time a cup of decaf and 8 saltines (unsalted tops) and peanut butter. I didn’t go right to sleep, so maybe more than an hour. I’m walking around barefoot every since I threw away the scandals in day 4 or 5. Defective K-cup a few grounds in coffee. This is differently not my normal sleep pattern. I am rock steady with coffee cup. Not enough to shut down hunger, maybe a little more bulk is needed, I will try a little equate Metamucil. Feel wide awake probably couldn’t fall asleep if I go back to bed.
Oh…. I don’t think, I have mentioned, Antibiotic… I have taken Cephalexin before and it didn’t do what the 4 course antibiotic did when I had Sepsis (see healthunlocked.com/cure-par.... I had an abscessed tooth; my dentist says not a cavity, so has to be from dry mouth which brings up another story that should be mentioned too.
I smoked from 16 to 55 years of age. I was a 3 pack a day when I quit. I tried many times, patches leave red spots with white centers on my body (I was allergic to the glue), I finally quit with lozenges. Even got to the point I could smoke 1 and not want another. Anyway, I thought I would try lozenges to see if they would help with PD (my opinion, little to no effect). But, I am hooked again. The problem with lozenges is sometimes, you have white colored lips. And, with dry mouth always. The sweetener also hurts my tooth. I question, if the lozenges caused my abscess. I now am on a second course of antibiotic, if the tooth tightens back up I will have a root canal, but I am concerned that I will spend the money and still have to have the tooth pulled. I have posted bad reviews on product pages and have asked on a smoking forum “Does anybody make a lozenge that doesn’t leave white chalky lips with a sweetener that doesn’t hurt a bad tooth”, I have not gotten a reply.
5:33 I just took my morning meds which included TTFD and going have my 2 cups of regular coffee.
I opened a capsule and poured the contents into a spoon. There was not a lot of small grainy powder. I wet the tip my finger, touched the contents and put on my tongue; a not good taste but not totally repugnant either; and not completely unlike the odd taste in my mouth after taking 150mg for 8 days. The little bit on my finger probably exceeded the RDA of B1 (Not a very scientific test). I wonder what the half life of TTDF is?
The bottle says 50mg of TTDF and doesn't say % RDA of B1.
It is supposedly water soluble, 100% absorbable; once in your cells how long to get used up!!!
Ok, some of you chemist out there; what's the weight of T and what's the weight TDF?
park_bear If I mixed a 50mg cap of TTDF with 10 mi of water, add a little sweetener; how much of the mix equals 25mg of B1?
Sorry, I noticed the product I am taking is labeled on the back (50mg of TTDF) - I have no idea of the weight of the TDF component, therefore no idea of how much B1.
Day 10 and 2 days of no TTFD, 5/25 4:00am: I did not take a dose of TTFD yesterday with my morning meds (last dose more than 47 hours ago). I won’t be taking today either. I do plan on taking a 50mg dose Saturday morning for energy to enjoy dancing that night. I am going to drink 2 cups decaf and might lie down again.
I still feel fine, but less mania (my night meds did not shut down the thoughts in my head. They were not as rapid). I will try not to rant and rave like I did the other night. I still have no major symptoms of PD. My neck pain is a little worst, but nothing Advil and Tylenol won't handle. I am still taking my 2-1/2 tabs of C/L. Yesterday afternoon, I did notice a few mosquitoes flying around my legs (one landed on my leg, I let it stay for a few seconds, it did not fly off so I killed it and I killed another while it was flying). Last night I wore long pants and long sleeves while outside.
Last night: went to bed a little before 10, woke from a dream at 11:30, went back to bed at 2:19, up again at 3 (not a good night’s sleep).
I would have probably not have posted my Event with my current state of mania or none of a few other things. Maybe, I should delete/edit some things, but they are all notes of an n1, non-placebo experiment (Note, one of the problems with being a self medicated human guinea pig). It’s now 5:30 and there is not a lot of sense in going back to bed.
I plan to try to calculate the % T in TTFD today (I want to know).
50mg = 33.3 mg thiamine 2,775% of RDA (for men ages 19 and older RDA is 1.2 mg)
Maybe, I should have tried what Dap1948 is promoting, but I had never heard of it till posting. And, I now have more than 490 caps of TTFD. I wonder if it is as good of insect repellant.
Added at 9:10 am. I just went outside in shorts for 30 minutes - No Mosquitos. I have little neck and did not take anything for pain. I may not take any TTFD tomorrow (depends on how I sleep tonight).
5/28 Day 11, Day 3 no TTDF: Occasional very slight tremor, took my last of 2 weeks of Cephalexin 500g 4 times a day at 11:52am (hope tooth doesn’t abscess again and antibiotic is not part of the reason my PD is better). I am having dreams, so must be getting some REM sleep. I walk around mostly barefoot, every since I threw in the trash the sandals that made me walk drunk. I have a cold and won’t be going to dance tonight. Going to cut back C/L to 2 twice a day. The video I shared yesterday of Nutty Professor was more in reference to taking other stuff, than I mixed up a concoction. Mania: is much less. Energy: still high. Personally, I feel as if I have rolled back my life-clock more than 10yrs.
Last night’s Sleep: I remember thinking I wanted to go to bed early, so before 10pm and don’t remember taking forever to go to sleep. 1:30am: Woke up with a summer cold (squeezing, runny nose, cough, no fever), took a dose of Nyquil. 3:00am Try to go back to bed. 4:16am Woke up startled from a dream, still have cold, I remember dreaming I was at a picnic, then someone saying you are dreaming, I do not recall what startled me (thinking someone poked me with a stick). 4:30am made a cup of decaf. 6:05am Took morning meds and made a cup of regular coffee. 8:10am I took my morning meds which are best with food and are at least 1 hr after taking c/l. I got maybe, more than 4-1/2hrs of sleep. Note: Any trips outside after going to bed, I wear long pants and long sleeves.
Notes: . 1) Dap1948 She thinks I have overdosed on B1 (I thank her and wished I had listened sooner). 2) I like mania, but sometimes it makes you do stupid, embarrassing things. 3) I have received a few warnings about developing a pear shaped body,
5/29 Day 12, (Day 4 of no TTDF) I am at a good place 😀 Occasional slight tremor, I have been informed by Dap1948 that Pear-shape in England refers to any negatives (a), Mania: I think at good level (b), I got a good 8+ hours sleep last night. Pain: acceptable level. Insect repellant (c): acceptable level). I am taking (d). Appetite: very good (at some point I may need to watch my weight. I may edit so check this post later.
Most processed foods are fortified with B1 (which is most likely hcl which doesn't easily cross the BBB), with the raise of neurological diseases, maybe it should be as TTDF.
Notes, References, links, etc.:
😀 For me (everybody may require a different dose) and please consult your doctor and do your research. 🥵
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(a)Dap1948 has inform me, that in England pear-shape refers to any negatives. and my reply. Oh... did not known that... Mania, Ranting & Raveling (more of caring on about nothing than loudly), (b), Seems to make dry mouth worst, Seems to increase need for more fiber, sleep disturbance.
(b) Mania: I like mania, but sometimes it makes you do stupid, embarrassing things (i.e. Posting a Pray Event on Facebook, etc,),
(c) Insect repellant: I have read that B1 repels mosquitoes (I will try to find a reference), all I can say, I was taking 200mg of (B1) HCL and it never helped me and mosquitoes now hate me. Dap1949 has indicated what she takes helps.
(d) walmart.com/ip/Allithiamine...Labeled as B1 on front label but only declares 50mg of TTDF on back (*). I calculated 33.3mg of B1 which is too much for me to take daily. The powder contained in caps taste bad with a very awful aftertaste lasting more than 50 min later. Maybe what Dap1948 takes works as well, she takes a half tab of hers.
(*) I would think not labeling in Nutrition Label would be a clear violation of FDA guidelines.
I have been told on mega dosing, you still have to take C/L. I would caution anybody on high dose about trying. All I can say is, for me it didn't matter and after a few days I quit most of the B1 I was taking.
When I was on the board of Augusta Christian researching Robert’s Rules of Order, I remember reading the worst arguments in organizing is religious because each side thinks God is on their side. I will say if your say, if your side didn’t win, it’s might be time to reevaluate your beliefs, God is on the side of the righteous and the side that does to least harm to His plan. All Things are possible for those who believe.
Note: I have been using an old Version of word to spell check and grammar check what I write. Unfortunate it does not transfer my entire format to this forum. I cannot find a more recent bootlegged version.
GCF. Big ask but. Could you do a short consolidated (maybe 3-5) key takeaways at D=14? Word count <100? 😬I’m equally mesmerised and confused by the experimentation and the ebb and the flow that you’re going thru. Sorry if I’m being slightly thick. Just FYI I’m doing the Laurie Mischley ND protocol with some serious amendments but might argue that she’s potentially as of now myopic around B1, B2 and B3. She’s absolutely all over almost every other therapeutic supplement in the world tho. Ex Mischley I’m taking 300mg of Thiamine daily and about 750mg of TruNiagen the last month. As well as 2 tabs of PS128. And in short I actually feel worse the last month. Throwing money at the problem ain’t making it go away. Yet. 😉
I am confused by "Could you do a short consolidated (maybe 3-5) key takeaways at D=14? Word count <100? 😬" I don't understand what you are asking me to do.
What do you mean by Mischley being myopic about B1 , B2, B3? 300 mg of thiamine is so low but it’s safe so why so low? That’s too low to even cross the Bbb I think? And 750 of TruNiagin is lower than the trial using 1000. That said, last month I was using 750 TN and 250 regular niacin in the PM.
Regarding being all over every other therapeutic, other than Lithium, I thought she was really standard??
Well. You’re reporting on what you see happening to you after taking what you say you’re taking. That’s Patient Reported Outcomes. Not a Neuro or medical team administering potential therapeutics or placebo and measuring the effects under say the UPDRS and other rating scales or systems. Sorry if that wasn’t clear.
Because External Links are going to page “Not Found” I am adding up dates to: BAD LINK: healthunlocked.com/cure-par...This Link takes you Page not Found,
Not saying don't, just not my recommendation. My Blood Pressure has always been on the high side of normal. Any increase made mine high and it could have been anxiety that push it through the roof.
Edited 3/24/23, Removed note and Added a new one — I had to stop TTFD twice, once because of HBP and a second time because I could not figure out how to reduce my dose of the Awful tasting stuff that has an even worst after taste. With exercise and med change, my BP is now 20 points lower and a little anxiety does throw me for a loop; and I found a source for ALINAMIN F (Fursultiamine Hydrochloride). 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 dividing into lower doses. To the best of my knowledge, Fursultiamine Hydrochloride is only available from Japan. Please don’t confuse Fursultiamine which is another name for TTFD with ALINAMIN. For more info, healthunlocked.com/cure-par....
Someone saved this post so I thought it prudent to edit and add a note:
6/25/23 I have stopped a 3rd time because I had return of symptoms (worsening of tremor) with none of my normal return of symptoms (anxiety, lose of sleep, constipation). I took a break and started back on on 1000mg of hcl. I was of 1100mg. Tremor has not gotten any better. Their seems to be a never ending cycle of return of symptoms at yet another lower dose.
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