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Parkinson's Movement
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Is Thiamine really stoping the progression of PD!?

Thiamine really helps many people, including me. But does it stop progression? I remember how I was in March before started it. Few weeks ago I reduced the dose too much and the symptoms came back and I think they were worse. I kept most of the symptoms under control with Thiamine, except the tremor which sometimes is getting low and sometimes is getting higher depending of stress or dose. Today I just started c/l with 1/4 25/100 pill and gradually I'll go up to see the results.

So my impression is Thiamine may slow the PD and helps symptoms but it seems it does not stop it. I may be wrong, maybe it is just a wrong impression or I encountered more stress lately compared with 9 month ago prior starting Thiamine. I'm still working and decided to give c/l a try.

What do you think about Thiamine results?

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Why you didn't start mucuna instead of C/L

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I'm still working and very busy and I have no time for try-outs with MP.

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Is mancuna better;and in wot form;im not on meds;dygnosed nov last year;want to delay meds if i can ?

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yes, mucuna is the best option for newly diagnosed

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Honestly I do not have he feeling that it stops progress, but I believe it helps.

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No doubt it stops progression. How long is the question.

Your CL dose is much to low. Search Doc Fahn here on HU.

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I just started c/l today with low dose and I'll increase after a week to get used to. I was able to keep the symptoms under control only with B1but I decided to give c/l a try after I noticed a slight deterioration of symptoms. I'm not sure if the PD advanced or I had extra stress.

That's why I asked if B1 stops progression or just amplifies the dopamine production.

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Dopamine! Constantine addressed that by saying you must maintain CL.

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I never took it before.

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Doc FahnπŸ”œ

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How do you establish after a few months or a year that stops the progression, if we could do it precisely, maybe with a biomarker we would all be happy because there would be no more discussion and everyone in the scientific community should accept the result whether it is positive or negative on b1. That would be an enormous relief.

But do you think that to this world with the interests that move is so simple?

Medicine is a great thing, like all knowledge, no one should use it for their own benefit. (Forgive me for this, it doesn't matter).

I am three years and more than 150 injections of B1 and not even a resurrected one dopamin cell, but this was not expected.

I haven't gotten any worse, can you believe that?

It seems not, and maybe it is better for you and for everyone not believe, because means you are still enough free to try and able to evaluate by yourself, but not in one week please!

Self-diagnosis is always a difficult thing to do and it is devastating for the soul because you never think of doing self-diagnosis when you feel better,...you do it only when you get worse. And so you get more worse :-)

Let me ask you a question:

From 1 to 10 how much your friends tell you that you have improved since you took the B1?

Gio

P.S: A true friend always tells you the truth.

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I agree with your point - it is very hard to tell after some months whether or not it has stopped progression. Parkinson's symptoms are so many and so varied and they fluctuate.

Be all that is it may, my condition as certainly improved since starting high-dose thiamine.

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There is a big misunderstanding or misconception about Thiamine and PD. The PD progression stops as long as people taking the Thiamine. Thiamine isnot a cure at least for now.Of course the symptoms will be back if we stop taking.

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I started B1 7 months ago and stabilised on 3.5g/day after 1 month. Two weeks ago symptoms (esp tremor) got worse, so I thought the PD was progressing. Then I realised that the dose had become too high even though it had been unchanged for 5 months, so I did a pill stop for 6 days. Symptoms went back to normal after 2 days, just slight tremor, then on the 6th day of the pill stop, I started to have some leg pain again that I had not suffered for months.

I reckon that I must now need less B1 and that I have saturated body tissue with a stock of B1, but I don't see that as the PD regressing. I restarted today on 2.5 g and will see whether that's enough. 6 months is not long enough to say whether B1 stops progression.

I will soon be starting to combine the B1protocol with supplements based on Dr Hinz's amino acid protocol to try to attack PD from two different angles at once.

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Are you taking any c/l with the thiamine?

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What is C/L?

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Carbidova/Levodoba or Sinemet

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To be clear, I did not determined if B1 stopped or did not stop progression. I was just asking a question and wanted to hear more opinions. I just compared my state (symptoms) in March before starting B1 (no other medication) with my state recently when I cut the dose down and symptoms came back. My impression was the symptoms were worse and that's why I taught B1 did not stop the progression. I may be wrong and again, that's why I wanted to get feedback from other PD fellows. Thiamine helped me a lot and I wish it is stopping the progression.

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In my opinion,

an important fact that 7 out of 10 dopamergic cells are probably dead or very suffering. Now the theory is that the b1 refreshments these suffering cells and brings them back to a certain good functionality. This will help to improve the symptoms in the short term, but as Kia says it is not a cure and we must continue to take the b1 to refresh the cells and slow down the progression. In theory.

Do you want more important gains?

Well! you have to find something else. Physical exercises for example, I would suggest that b3 can be effective in autophagia, in mitochondria and in reducing inflammation with other vitamins and minerals, but it must be studied in terms of safety, probiotic how Art and other suggest,stem cells give hope, but I do not think that soon will be available, the ldopa helps, but its bioavailability is very variable over the hours. If taken in an initial stage with the b1 the PD would not make me more afraid. In advanced stages the b1 helps a lot, but we must be satisfied. This is only my opinion. Take care to yourself, this is your responsibility and nobody else's.

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Gio,

Butyrate, which we have discussed extensively also improves mitochondrial function amongst its many benefits in humans and of course PWPs are deficient in it.

Art

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ion_ion,

A couple of things to consider are that you actually have not found your optimal B-1 dose yet and so it is a bit premature to be checking for indications of progression or not. You apparently are very close to your optimal dose because you were quite steady for several months Many people who test HDT report that their symptoms sometimes worsen to a point that they feel is worse than when they started HDT and this has almost always been related to an incorrect dose of B-1 and to date, has always been temporary in nature until the dose is corrected and the push test response is good. This is where the videos can be utilized for comparison.

Another issue that I am very aware of is that there is a phenomenon where people simply do not remember exactly how bad they were and I have seen this effect live in a friend of mine as well as myself and others, so I know it is real and again, a good reason for the regular taking of videos to have a steady basis for comparison. I will go one step further here and suggest that for your own personal use, you take longer videos of yourself than what Dr. C needs so you can see more of the "little details" related to PD symptoms and use these personal videos as an even better basis for comparison than the short clips that Dr. C requires on his end.

Dr. Costantini has been clear that you can take HDT vacations once you have established your optimum dose, have improved your push test to "good" and are stable. From what I have seen on this forum, that point occurs at somewhere beyond a year for some people. Once that point has been established, Dr. C says you can take anywhere from a one to three month vacation from HDT without problems. In his patients who have done this, their symptoms at the end of the vacation have not been worse than when they started! Granted he only has patients at around 5 1/2 to 6 years max now on HDT so that is the maximum length he has seen with no progression. Dr. C does have one patient with a DatScan from over 5 years ago and a recent DatScan for comparison. The DatScan showed no progression to the extent that it is able to do that.

An important point to remember is that some of these no progression patients were not "honeymoon patients" so that factor can be discounted too since they are well past that honeymoon period and still no apparent progression at the end of the vacation! The only people I am aware of on this forum who might be at a point where they could attempt a HDT vacation are Kia17 and Gio. Kia is around a year and a half into HDT while Gio is three years in and I think he might have mentioned taking a mini-vacation, but I am not positive on that point.

We discussed this subject recently and another consideration is that B-1 is an antioxidant and as such may help or at least partially help gut perturbances and leaky gut as well as improve the bodies natural production of B-1 in the gut through normal bacterial interactions and improvement in gut parameters which multiple members have reported. If this theory is correct, then it could partially explain why, after so many months of good response to a dose that suddenly a reduction is needed, because the gut may be back to making more thiamine as it was meant to do and thereby indirectly increasing the total available B-1 by just enough to disturb the previously good response, because so far those who have run into this problem and mentioned it on the forum seem to only need a minor dose adjustment to get back on track. I think Kia is a more recent example of this. After approximately a year and a half of being fairly stable on a fixed B-1 dose, he had a worsening of symptoms requiring Dr. C to adjust his dose down a smidgen by removing one daily dose per week or to say that a little differently, he now takes the same dose he was taking long term but only on 6 days of the week with one day off and Kia is now back on track, but actually a little better with the addition of another magnesium supplement which he has found "VERY USEFUL"!

Art

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Art,

As per my personal experience,your understanding of the HDT protocol is completely rational and correct.

Thank you

Kia

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Kia, I would have bet my life that you're a "she" not "he." :)

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Me too! 😁

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How did you come to this conclusion Despe? 😊

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Kia sounds like a girl's name. :)

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It’s a very masculine name here.If you still think otherwise then you can call me Arnold! πŸ€¨πŸ˜€

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Arnold it is your real name?πŸ€”πŸ€”πŸ€” πŸ˜€

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Who knows Gio. Maybe! πŸ’ͺ πŸ˜€

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πŸ˜‡πŸ‘

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It sounds like a car to me. Kia cars are sort of popular on this side of the pond! 😜😜😜

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Why not Art. Kia motors like the GM (General Motors). πŸ˜€

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They're very popular, sort of like you!

Art

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Art

I like your last comment not because you said I am popular 😊but because you answered our dear friend who raised the original question.πŸ‘πŸ‘πŸ˜‚πŸ‘πŸ‘

Kia

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Well, Despe said, ' I would have bet my life that you're a "she" not "he." :) '. Based on that , Despe, I would recommend you stay away from Las Vegas! 😜😜😜

Art

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Absolutely!πŸ˜‚

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Used to visit Las Vegas often, not any more, too far! :)

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Thank you Art. Again, I hope B1 stops progression and I hope I'm wrong with my assumption. Probably one year from now I'll know for sure.

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ion_ion

My skeptical mind has slowly learned that it is a lost battle to think I might understand anywhere close to what Dr. Costantini does about HDT ! He has consistently shown me the error of that line of thinking and I humbly agree!

Art

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I don’t see any scientific basis, or studies, on how Thiamine could possibly stop the neuro-degeneration of PD, thinking in terms of the pathophysiology of PD. That being said, I can see where the use of certain supplements, and vitamins,such as the use of Thiamine, could help alleviate some symptomology of PD. If it helps you, go for it, is my philosophy. What may help one person, may not help another. I'm all for alleviating the debilitating symptoms of PD.

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Ask Betterdorff, thiamine helps the energy processes of nerve cells, cellular respiration and delays aging. Maybe... :-)

scholar.google.be/citations...

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Thanks!

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When there is restoration of hyposmia, arm swing, fatigue, and a lot of other PD symptoms, I strongly believe that is "halt" of progression and restoration of neurons. Besides, neurons don't die, they hibernate, and I strongly believe that.

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That dopamergic neurons are hibernated could mean an almost zero function and this is possible. In theory and I have seen on me these parts of dormant or suffering neurons are promptly awakened by a high dose of b1, but then later the effect is less visible but present. Do you want a confirmation? Stop for a month or two to take the b1 and very gradually you will come back to being tired and stiff. One day, colder than the others, you'll say: oh my god, what's happening to me today? I suddenly got worse. No, no, you have gone on very gradually and then suddenly you are aware of it. So this disease goes both in the improvements and in the worsening: very very gradual. I recently had to stop b1 injections for a month because my wife was slightly injured. So I thought about taking the pills of b1 from 300mg, 2 per day. I thought I was fine, I did not seem to get worse and I'm very careful about these things, then I gave a 100mg injection, after a month of restraint; I did not believe it, in a couple of hours I changed the posture and facial expression that have become more loose. I was not stiff but it worked like the first time. The PD is a tiger with the b1 purring, but we can not underline the fact that it is a serious neurodegenerative disease that probably if you have the symptoms has injured from 50 to 70% of dopamergic neurons and b1 will not bring them back to life. If I were a researcher, seeing how B1 works and with what we already know I would invest in the area of ​​mitochondrial life and I would look for a solution that can repair or multiply these small organisms so suffering and so lacking in number in cells of patients with PD.

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Right on, Gio! I will tip in for a clinical trial. :)

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Excellent thinking Gio, and I would agree with you. Thank you for your input!

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Thanks also to you, I really appreciate your post always intelligent and well common sense. :-)

Gio

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It is important that one is confident in their beliefs.

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The problem is that every six months a new miracle substance, has become the buzz on everyone lips here, and it has gone on for many years . So many candidates from coconut oil and beyond . It is always tooted by one person as the next best thing to a cure with disbelief that eventually , after everybody has tried it (The health food store loves to see me come in) it is relegated to the back of the medicine cabinet and forgotten. The reason a lot of us are now very skeptical is the complete lack of any scientific controlled study or interest from someone like MJ FOX assoc. Maybe because this is self administered by desperate people taking advise from strangers with unknown credentials and experience.

We have now Thiamine and Fisetin in the contention for miracle drug. I am not saying it does not work , it is possible this is the one that works (especially If I dont try it) but why no recognition by other doctors or medical colleges ,why are we so alone in this.

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I agree, and, by the way, I am in a scientifically controlled study with MJ Fox assoc.

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What kind of scientific study are you a part of. Would love to hear.

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It is an ongoing study, analyzing effects of medicine and symptoms, and progression. Every couple months I provide data on all kinds of details of living with PD, and this is being evaluated.

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ddmagee1, Would that be the "Fox Insight" survey of patients? That's the one I am doing.

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Yes, that is the Fox Insight survey!

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I am not aware of any medication that stops the progression of Pd. While medication hides the symptoms the Pd is still getting worse.

The only thing I know that actually slows down the progression of Pd and in my case, has reversed it, is 'Fast Walking'. You may not fancy waling for one hour three times a week, but if that's what can make you better then isn't it worth it?

I have lived a normal life since 2002 and am now 84 years of age and can still walk seven kilometres in an hour. There are not many people at my age who don't even have Pd that can walk that fast or that distance. So why not try it?

If you want to know more about fast walking, have a look at my website - reverseparkinsons.net and contact me, it costs nothing.

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Hi John , I could not find any detail on fast walking in your book could you describe it in more detail.

Thanks. Geoff Edge

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Hi Geoff. Sorry it has taken so long to reply. You say you cannot find any detail on fast walking in my book, are you talking about "Reverse Parkinson's Disease?". If so, Appendix 5 has all the information on Fast Walking. I have written eight editions of my book and each edition has more information on dealing with Pd than the previous one. Whch edition do you have?

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PD is a complex disease, it is like a labyrinth or puzzle different from person to person. But the end of the labyrinth seems to be the same even the start is different.

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No, I simple disagree. :-) :-) :-)

Perhaps in the company of Jonh Pepper. :-)

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Hope time Will prove you are wrong...:-)

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I will try it anyway but I kinda think it will end up in the back of the cabinet with the B12 and Q and so much other stuff. I hope I am wrong

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Is there a problem with B12 Jim? I take it on daily basis.

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B12 did not do anything , and there was no room in my medication dispenser. Since then purchased a bigger dispenser . Vitamins B1, B12, C, D, Iron, Q, E , are always suggested in such huge doses that I certainly can not take them all. A small amount is never said to be of any use, odd. Now we are talking self injection for Thiamine .

Why do you still take B12 supplements . I am going to start a daily multivitamin that my MD suggested, but he says there are no signs of any vitamin deficiency and my Neurologist just laughs at me when I asked about Vitamins. He is very well aware of the latest cure being discussed. I think he is on this forum, reading, watching, quietly.

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There are a number of studies done on correlation of B12 levels and severity of PD symptoms, see one of the latest articles:

ucsf.edu/news/2018/03/40999...

However, the problem with determining B12 deficiency is that there is no universal consensus on the normal range of serum B12 (which actually doesn't even reflect the B12 levels in cells/tissues). I am sure your neurologist tested your MMA which is more accurate for functional B12 levels. I also tested in normal range however as we age the B12 levels decline due to many factors one of which is gastro intrinsic factor which secretion in the stomach declines with age and which helps B12 absorption . So I take B12 sublingually hoping for it to get absorbed bypassing the intrinsic factor, however not sure if that's effective, injections might be a more effective route.

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Anyone taking C/L R 539 yellow round 25/100 pills? I started taking 1/2 pill every four hours , 4 times a day but they do nothing. I felt a big difference when I started B1 in March after a week. The dr who prescribed the pills it the one who got 186 k in few years from Pharma. I'm wondering if he prescribed me low quality pills. I saw the guy 3 times and he was bitching on me because I did not started the pills right away and he warned me I would die in 3-5 years if I kept postponig.

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What? That is a rather stern warning! 1/2 pill of c/l every four hours, 4 times a day, seems to be such a low dosage. I know it would do nothing to help me!

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I went 2 pills 100/25 a day plus 1g B1 once or twice a day and it seems it is helping pretty good. Is not cutting the tremor 100% but 85-90 % and also helps also to manage stress.

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