I am lost. I have been experimenting with thiamine HCL since January 2018, trying all doses with IM. I have been followed by Dr Costantini from June 2018 until his accident.
Nothing worked, except for two or three blessed days following the wash out periods.
I finally let go of thiamine injections and plan to turn to pills, in hope that pills provide a steadier flow of thiamine in the body.
I will have to find the right dose in a 500 to 4000 mg (1 to 8 tablets) range. I am 67, 70 kg, 3,5 years after diagnosis, non-tremor dominant.
How would you proceed:
- beginning with 1 tablet and upping the dose each 2 or more weeks?
- beginning with 8 tablets and lowering the dose?
- any other - and better – process?
Your experience and comments will be greatly appreciated.
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What is/was your IM injections total mg/week? Did you try going on a break?
My husband started in June 2018 and like you he has had ups and downs. He went on a long break in July 2019 due to stenting and restarted a week ago. He lowered his dose from 200mg to 100mg (50mg X 2 week). Can't see dramatic results but I believe B1 helps, just don't see immediate results.
We are also thinking about going to pills once vials are finished. Another good form of B1 is Allithiamine.
Thank you Despe. I hope your husband is better now.
I tried all the doses of IM, beginning with 2x100 mg per week, down to 50 mg once a week, 3 weeks per month, under supervision by Dr C. It did not work. I firmly believe in Dr C.'s work. Time to try with tablets...
You are close to my situation like weight and PD age except I'm RH tremor dominant.
I started B1 in March 2018, 2g a day (Solgar pills 500mg, two in the morning and two in the afternoon). I saw improvements in a week but after a month I saw huge improvements.
All my symptoms went away except the tremor which is still low. In June this year I went down to 1g a day (two pills around 1pm). I'm still good. I can't swallow the pills but I chew them with dark 85% chocolate. Actually they do not taste so bad.
Hi Ion_ion. Thank you so much for the precision. Apparently one should not expect anything before one week and try for at least one month before forming an opinion.
I see that Park_bear even goes up to 4 month. I never stayed that long on any dosage.
I generally see that Park Bear is no dummy, he (or she) usually gets my endorsement until proven otherwise. Very few here have earned that kind of bye.
The maximum dose at the beginning. Sounds good, but how then find out, if it does not work, between inefficacy and overdose... Four month seem a very long time, but maybe you'r right : I never tried any dose for that long after all.
I'm tremor predominant, 2.5 years past diagnosis. Dec 2018 I started oral HDT with Swanson 500mg. They upset my gut so I switched to injections, which thankfully are working well. I have gone back to oral dosing a couple of times, and the best thing I found for my apparently sensitive GI tract is powder from BulkSupplements.com . 1/8 tsp = 250mg, so measure accordingly. I found it to be effective, inexpensive, and well tolerated. Be advised it is bitter. I mix in a shot glass with juice or kombucha. 😃
I’m in same boat and same age and weight! I’ve been taking 500 g 2 times a day and it worked well but suddenly I seem to be tremor I gotta a bit and my gait is getting worse. So I should decrease dose? I don’t know if I should increase or decrease.
Any time symptoms, either old or new, worsen, he generally felt it was because the dose was high. I don't know for sure, but I think you were doing well for a significant period of time, as in months. There is a recent post up on the forum that Roy started. In a reply post I explain what Dr. C has said about dosing and overdosing. Here is a link to that post:
I am 56 years old and 88 kg and was diagnosed in May of 2018. I began taking high dose thiamine within 3 weeks of being diagnosed and I have been taking it every day since then. I began at 3 grams per day for about 3 months, then reduced to 2 grams, and eventually settled at 1.5 per day (2 500 mg tablets in the morning and 1 in the afternoon). If I were you, I'd start at about 2 grams per day and if symptoms get slightly worse after an initial improvement, I'd go down to 1.5 grams per day, but I'm basing this just on my own experience. Good luck! I'm with Park Bear regarding his advice not to change dosage very quickly.
Salut. J'ai commencé avec 1 000 mg (1 g) de thiamine en février 2019 et cela fonctionne bien aujourd'hui avec 3 g (plus d'énergie en particulier, moins de fatigue).
Un grand merci à Doc Costantini et à tous ceux qui font connaître ce traitement.
Je prends aussi Modopar (3x100 mg / jour) et Mucuna. Je suis allé jusqu'à 4g de Vitacost vitamine B1 (facile à avaler) pendant un mois. Mais maintenant, 3g semble suffisant.
Diagnostiqué en 2010
poids: 92kg
73 ans
J'ai réussi à arrêter mes tremblements en 2007 avec le Mucuna.
Avec B1, j'ai commencé avec 1000 mg / jour et j'ai mis beaucoup de temps (6 mois) à atteindre le maximum (4 g / jour). Plusieurs fois, en augmentant la dose, j'ai eu une bonne journée, puis une détérioration. Dans ce cas, nous ne savons plus vraiment quoi faire. Faut-il diminuer ou augmenter ???? Cela nécessite de tester les deux hypothèses et prend beaucoup de temps.
Hypothèse: à partir de 4 g / jour (ou un niveau que vous supposez élevé pour vous), il ne restera qu'une possibilité; diminution. Je sais, ce n'est pas super génial!
Je souhaite que vous trouviez enfin la solution en validant lentement chaque étape décroissante de 500 mg
In some instances, a 500 mg reduction may be too much. What some of the members may have forgotten is that Dr. C generally wanted a break of 3 to 5 days if symptoms worsen after you have been stable for a month or more. During the break, take notes of how your body reacts. If the worsened symptoms improve fairly quickly after stopping B-1, Dr. C felt that you were close to an optimum dose, but slightly high. The closer it took to 5 days or more of no B-1 to see symptom improvement, the further you were from your optimum dose and this suggested to Dr. C that you may need to deduct more from your current dose.
Also having the 100 mg B-1 HCL capsules in addition to the 500 mg capsules can make it easier for fine tuning your dose.
Art, thanks so much for including the insight about the relationship Dr. C. saw between the speed of response to dose change and how close a person is to their optimal dose. That makes total sense to me in looking at my own experience.
Thank you Art for your precious help and all the synthesis work you do. I now have 100mg Solgar capsules and will continue to refine the dosage, with or without a stop (one day a week for example). I've tried all the scenarios a little bit. I follow up on doses and breaks on my I-pad spreadsheet but for symptom monitoring, at first we don't really know what we're going to find out and then it's how to measure the gaps. For me, the most appreciated and constant improvement with B1 (after a few weeks) is energy (or less, fatigue). The ease of getting up from my couch is my best indicator. There are also other improvements such as balance, better ability to walk in the middle of the crowd, presence or not of neck pain or knee pain, which are indicators but more difficult to follow. The most unexpected was the significant increase in the effect of dopamine and Mucuna doses. I can hold without problem until 6 or 7pm with my lunchtime dose. So I will probably reposition my three daily doses (I take B1 in one go: in the morning)
Congratulations, you seem to be off to a very good start and symptom relief is coming on relatively quickly for you compared to others who have taken months to see their first benefit or symptom relief. This is very good because it is much easier to keep taking B-1 once you see any improvement, whereas it is much more difficult to continue testing B-1 when you don't see any improvement for months. I like that you are fairly methodical in your approach and are keeping track of how HDT is playing out for you. All of this information you are reporting is useful for others who are considering testing HDT/B-1!
Some members have found that they have been able to reduce their dose of C/L once started on HDT/B-1 and it makes sense that you would also see a type of synergy between B-1 and mucuna as you reported.
Many of the improvements you are mentioning have been reported by other forum members as outlined at this link :
Lastly, but also very important is that you are a responder to B-1 and if Dr. Costantini is correct, you may be halting or very significantly slowing disease progression and who wouldn't want that!
- In the morning when I get up: one Modopar 125 + one dose of Zandopa 200 + 1000mg of vitamin C (all together).
- 3 g of vitamin B1 during breakfast
- Midi: one Modopar 125 + three capsules of 200 mg of Mucuna at 50% (therefore 300mg of L-Dopa) + 500 or 1000mg of vitamin C (all together)
- Evening: between 6pm and 7pm: one Modopar 125 + two 200mg capsules (therefore 200mg L-Dopa) + 500 mg vitamin C (together)
- Nothing at night (it's a little hard to walk when I get up...)
Vitamin C is supposed to prevent the decarboxylation of Mucuna and I take the doses at least 20 minutes before the meal.
I take an extra Modopar 62.5 if I have a job or a long day.
A year ago I tried 100% in Mucuna for 2 months ( but without vitamin C): too difficult, I took Modopar again. With the good results with B1 I will try again one day.
This is another thread which paints a confusing picture of B1. Not many have the Eureka major instant no question life changing response of Royprop.
If it takes 4 months to work, how do you confirm its the vitamin working? Despe's post could be paraphrased as "i have faith, but after 3 years dedicated adherence to the faith it hasn't really worked". None of these "qualified successes" nor failures like marc do anything for the attempted theoretical justification for its method of action. Even jimcaster appears only to have benefited by it slowing the progress, and who knows what the progress would have been without?
Probably unintentionally, but the Dr has created an approach that is immune to criticism, because any mention of a lack of efficacy is met with "you're doing it wrong. Increase the dose. Decrease the dose. Stop for 4 days. Start again. Take it for 4 months."
If B1 worked for every single PWP, it would literally be the only substance in the world for which that would be true. Even levodopa fails for some patients. Of course, when someone has an unpleasant (or innefective) experience with levodopa (or agonists), they are frequently (though not always) told on HU that they should abandon the poisonous chemical drug and start on B1, or fast walking, or whatever other 'natural' option the forum is into at the time.
But mention that B1 isn't working and all you hear is that you need to make some adjustment to your regimen.
It's a bit cultish, to be honest. I appreciate that the Dr is incredibly bullish about B1 but my view is that the odds that it is actually directly responsible for all of the symptom suppression or disease modificstion for which it earns credit are almost zero.
That said, it looks like the risks are minimal so no reason for people not to get stuck in to it.
I share your view it has cult status and some of it's followers are hard on heresy. That doesn't mean it doesn't work. At least for some. Royprop would be one obvious example and I anticipate a few lining up to endorse. But the suggestion for its method of action offered by the good doctor and others doesn't really fit the pattern of results. Certainly any clinical trial is going to struggle with blinding if the dose needs constant adjustment.
Oh I'm all for it if people like it. Relatively inexpensive. Downside risks not significant (that we know about). I've just noticed that it's unusual to hear anyone contemplate that it mightn't work for everyone.
I agree that a clinical trial will be complicated If there's no standard approach. That probably isn't helping with interest in a trial. The faithful will say that there's no money in it or that drug companies would discourage it, but clinical trials have been run on exercise (though there must be placebo issues there too) and that won't help drug companies either.
I wish to point out that levodopa is a foreign substance introduced into a PwP's body in an attempt to address a specific malfunction, while EVERY human body REQUIRES vitamin B1 simply to maintain cellular processes that support LIFE.
Moreover, our bodies don't make B1 so some MUST be consumed every day.
Therefore, we can be confident B1 WILL create a response of some kind because it's already doing so, every day, without exception, in the bodies of the young, old, sick, well, male, female, PwP or not. Because without B1, we die.
An important distinction between B1 and levodopa, I think.
The RDI for thiamine is 1.2mg a day. I don't accept that the additional 3 thousand mg a day are necessarily creating any kind of therapeutic benefit anymore so than taking giant doses of vitamin C or D would do.
We need all sorts of things for life (oxygen, for instance. Maybe we should all start breathing a thousand times more oxygen?) that don't provide marginal benefit over the amount required to stay generally healthy.
Thank you for that post! You are officially the lowest effective dose of B-1 on this forum. Previously it was just below 100 mg / day. Now it is 50 mg/day to as low as 25 mg/day. Good to know for future reference. The new effective dose is as low as 25 mg/day to 4,000 mg/day. Quite a range!
Why would I? You havent substantially addressed any of the points I've made. I'm not interested in getting into an argument about B1, much less me and my story. This is discussion board. I made some observations about B1 that some probably agree with and some probably don't. If you think B1 is worth taking, what I say shouldn't adversely influence that.
That's pretty pretty obnoxious, coming from someone that isn't a PWP. Why would I share my details with you? You haven't shown an interest in actual discussion.
Do you know anyone here on HU who hides his/her personal health condition? Most of them do fight their demon PD. Yes, you are right, I am not the one with PD, my husband is. I am trying to contribute here constructively. You on the other hand have shown nothing but negativism!
I'm not hiding anything, I just don't feel the need to disclose anything to you.
I haven't been negative, in fact I have encouraged people to take B1 if they think it helps. I think people could think slightly more critically about some of the grand claims that get made about various treatments, because people have limited time and resources.
My guess is you have your own doubts about B1, and that explains your reactions to what others say about it.
I've been taking B1 since January 2019, and now don't want to be with out it, ever. It took 5-6 months to land on my right dose, but because I had gone slowly, I could tell when I found it.
Personally I don't find it confusing that neurological changes take time to manifest. Neurons repair and replace themselves very slowly compared to faster-cycling cells. Corneal cells, for example, show observable healing literally minutes after injury. Not so neurons.
Think of the B1 delay in seeing results as like the wait people have when they first take SSRI antidepressants. They have to be cautioned about this delay so they keep taking the doses even though 'obviously it's not doing anything.'
Relief from target symptoms is still attributed to the SSRIeven though 'nothing happens' for at least 2 weeks, and people won't feel the maximum effect for weeks or months.
People outliving cancer go through weeks or months of increasingly debilitating chemo and then have to wait 5 years to find out if it 'worked.'
So please consider that how quickly changes appear in the body is no gauge at all of whether a treatment ultimately 'works.'
Because my attitude is that lots of things are worse than death and I'll endure this disease only as long as the juice is worth the squeeze. Because I don't exercise. Because I can't 'eat right'. Because I already had serious health issues before PD; now I get to have them, and PD too,
Because before I started taking B1 I didn't have the physical energy to get up and walk across the room, let alone do anything functional or useful or interesting or fun. Socialize? Yeah, right. Talk across the blank-faced lump.
Even though taking an extremely high dose of Sinemet every 2 hours around the clock, my "ON' body still felt like chunks of wood held together with baling wire. In 3 months I fell three times, getting injured each time (broke ribs on the last one).
Couldn't count on swallowing safely. Couldn't count on speech being understood. Couldn't count on breathing.
Typing was two crooked fingers and lots of backspacing.
I lived in pain and fear. So did my care partner.
Now, with the B1, I dance. Literally. Every day. My body is fluid and flexible and responsive -- it belongs to me again. I'm 80-95% back. I'm free.
I can type more than 50 wpm for hours at a time. I have fingers quick and nimble enough that I'm using them all.
Energy? I shoveled snow in the front yard for 90 minutes continuously, three times in two days, after a 2-ft snowfall. I snatch up a basket of laundry and stride off to the utility room without a second thought.
I haven't fallen even once, and I've caught myself from falling dozens of times. I can do that again.
In short, I can do most things I want, within reason, for long stretches of every day. I think about what I want to DO today, when I wake up.
I feel like MYSELF again. My life feels worth living again. And my care partner's stress is exponentially less.
It's not all sunshine and roses, I still have horrible 'OFF' episodes, and I'm learning the optimal B1 dose is in fact a moving target over time. And there are still all my other health issues, which haven't gone away.
But the fundamental difference in my overall quality of life from taking B1 is night and day. With the Sinemet and B1 full 'ON,' I've actually had two different neurologists, at different times, run the standard PD assessment with me and one didn't believe I even HAD PD, and the other one could only find a little slowness in my left hand.
Of course, your mileage may vary. I'm 'blessed' with a dramatic response to levodopa, which means my 'ON' is already better than some get. Likewise this is MY response to B1, and there's no guarantee anybody else's response will be comparable. It's a crapshoot, like everything else on offer.
But I'd hate for anybody to miss out on even a chance to get even HALF this much of their life back,
A cult? Ok. Sure. Sign me up, when do I shave my head? Because I've BEEN to the promised land. For me, it's already real. That's all I can say.
Yes, it's that simple. The hard part is the trial-and-error of getting to the right dose.
As far as I know, and my own experience, doesn't matter when it's taken in relation to PD meds -- more useful to attend to taking it with food or not. For some people 'it cured my constipation' shows up as 'it gave me the trots.' If this happens, taking less, or taking it with food, or both, usually takes care of it.
One of the most beautiful and moving success stories I've ever read.
Having or not having Parkinson's has a big difference for those who have it and for his family members given the point of view and context in which they operate.
Parkinson's is continuous suffering, it is motor and non-motor symptoms and the advanced stages of the disease can be very painful. The Parkinson's patient, in the current state of care, does not have an easy future, but his concerns are more aimed at not being a burden to the family. We Parkinson's patients are desperate, it's true! but not for this reason we are stupid or naive.
I am very happy with every success on this disease, “scientific “or not, what matters is the result.
I am happy because it also concerns the person, because it makes his life more beautiful and interesting and I also win a little.
I could also be healthy and spend all my time playing video games or trolling on Twitter, but this is the context in which we operate here on HU and in my opinion should be kept in mind.
Thank you for sharing your success story, I am very happy for you.
Maybe just me but I have immediate reduction of symptoms on B1 injection, which lasts couple days. My protocol is 3 weeks on, one week off. I’m on day 4 of week long holiday right now and I’m feeling it. Looking forward to Monday shot. But honoring the principle of challenging the body in this way. Doing the same with acupuncture treatments. Three weeks on, one off. But back to Thiamine: it’s the single most effective treatment I’ve found for symptom relief. I cannot testify as to progression. Insufficient data.
That's good to know. As was T-Writers reply. I remain interested in this once clear of SPARK, and am trying to make sense of its mixed results. Part of that may be the lack of detail from people benefitting.
I’ve always been slightly bemused by it all too to tell the truth. I do so many things such as infra red hat, exercise, fasting that it’s difficult to ascertain where any benefits lie really. One thing I know: if I stop B1 there’s little real change in my condition. 😕
I don't know if it's desperation. I think it's a low risk/potentially high reward proposition. I can't say for sure that B1 is helping me, but I don't think it's hurting and I believe my progression is very slow. Good luck, jeeves19!
I'd start low with B1 n write down your ups and downs it so easy to forget. You recently dx and may not need large dose. I started on 3g a day under DrC's advice and now a year later my dose is 175mg a day. You have to be patient take time adjusting up and once it oversteps stop for few days to release it and then resume at previous dose. That should be your dose.
I'm 69 years old, 210 pounds, diagnosed July 2015. I started last year and gradually worked up to 2 grams per day. Felt fantastic but after about 9 months I was getting very nervous, grinding teeth, constantly chewing so I stopped for 2 weeks and went up to 1.5 grams. After a few weeks I started getting nervous again. Stopping and going back to lower doses I am now down to 100 mg per day, usually before bed. If I feel nervous I miss a day. It does make a difference once you settle where your body is comfortable.
I don't know what my computer did with my response, so if this duplicates, ignore it.
I've found that one must go up to the maximum tolerable dose to start, whatever it is in your unique case, and everyone is unique.
How do you know what that dose is? Go up to the point where you get those itchy, skin reactions and irritations, then back off until they stop, then continue for several months and be patient. Maybe 3-4-5-6 months. I don't think it can hurt if you use the water soluble HCL formula since it will not accumulate in your fat tissue, which is the risk with other formulations and may be quite toxic in the end. Water-soluble will just pass on out of you and I think is pretty safe because of that, but I don't know that for certain and someone more knowledgeable about that should chime in. Fat-soluble, on the other hand, will accumulate in your tissues and I think is a risk of toxicity, and who knows what that outcome and risk will be. But usually I think some very high doses are tolerable as far as your getting it back out of your body is concerned, again with the HCL which is water soluble.
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I hope you find the "magic" dose in the pill form. Take care, friend. 
Vitamin B1 : Thiamine vs. Benfotiamine 
Dropping TTFD and planning to switch to Sublingual (B1)
I think b1 is back at vitacost
