Parkinson's Movement
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Gamble

For only 29$ you can start thiamin hcl high dose treatment. Such a waste of the time you could be living in better shape. Even if you do not believe all the testimonies herein, take the "gamble". What you have to loose is nothing compared to the surety awaiting you with Parkinson's. It baffles me, saddens me when I see refusal to make B1 do its miracles for PwP simply because they think it is a scam. A scam that no one profits from? Come on!

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Hi RoyProp,

At this point in time, tremor is virtually my only symptom. If I recall correctly, Dr Costantini (and you) have said that high-dose thiamine has limited effect on tremor. Therefore, for me, high-dose thiamine would have to be neuroprotective for it to be worthwhile.

Please correct me if I am wrong, but my understanding is that it has not been proven that high-dose thiamine slows the progression of PD.

Jeff

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It certainly reversed it for me. Parkinson's has not progressed. It has not progressed on the thousands Doc Costantini has treated. It has not been effective for those that prefer to discredit the doctor as well as those of us who greatly benefit.

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RoyProp said: "It has not progressed on the thousands Doc Costantini has treated."

A link to the corresponding research paper would be great ...

As for your own case, a few months is too short a time period to make such a claim.

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Not wishing to besmirch Roy’s claims and I may try thiamine myself but all factors need to be considered when claims are made. In his case i believe he Roy started regular use of levadopa (250x3 day) when he started thiamine. This makes it difficult to know what causes what.

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No and no not difficult.

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I am guessing on no no and not difficult. I do know when I asked you when you started regular sinemet you said you couldnt remember or werent sure. I do believe it was around the time you started thiamine. The timing is very signficant for credibility of claims. All other factors need to be eliminated to prove causation.

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but even if you discount his claims, what about all the other success stories?

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I dont discount Roys claims but I need more information to have an informed opinion. I will take a look at the other succss stories on here, unfortnately often people dont post background info like time since diagnosis, other medications used and most importantly any changes to routines or medicines since taking thiamine. This leaves alot of questions unanswered. For instance I was reading one story about starting amantadine about the same time as thiamine so is the reported increase in energy due to the amantadine (prescribed for MS fatigue and often helps PD patients too) or thiamine or both?

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read my profile. it includes my history, and i update it to keep it current. i have had noticeable improvements since taking thiamine.

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Thanks jujulini,

I am interested to watch your progress. I see you have only been on it 3 weeks and seem to have tried other vitamins etc too.

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hikoi- yes, i do not like to take pharmaceuticals, and only take the c/l out of necessity, or i would be like a zombie & i take amantidine for dyskinesias. when i introduced the thiamine, i had been taking everything else for awhile, so i know my improvements were from the thiamine.

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HI Royprop,

I've had PD for 17 years. Young Onset. Started in 2001 when I was 31. I'm interested in seeing how thiamine might affect my symptoms. I'm also takin a daily regimen of standard Parkinson's meds.

I have some questions for you

1. What is a good email address for Dr. Constantini, or of someone who works with him in his clinic?

2. Where and how did you get IM thiamine cloridrate (which, I believe, is the type Dr. C. recommends) for your IM injections? And how much does it cost?

3. What type/brand of oral thiamine do you take and where do you purchase it from? How much does it cost? Also, what is your daily total dosage, and what is your dosage schedule?

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Dr. Costantini only has one patient who has a DatScan from 5+ years ago and a recent DatScan that shows no progression to the extent that a DatScan can show. Other than that, the only other thing to suggest that B-1 may slow or halt progression are his patients who have taken thiamine for up to 5 1/2 years who have temporarily stopped taking thiamine for a month or two during which time their symptoms returned, but only to an extent that was similar or less than when they started based mainly on their historical videos and historical UPDRS score through the years which Dr. Costantini does at each visit. Once they resumed thiamine, the symptom level returned to where they were when they temporarily stopped taking thiamine. Definitely not the best way to determine progression or non progression, but it is all there is to use for comparison that I am aware of. It is possible that a person may not progress for 5 1/2 years without thiamine, but I would think that would be the exception and not the rule especially considering that he is talking about more than just one or two patients and some of his patients were at a very advanced PD stage when starting on his thiamine protocol.

As far as tremors, Dr. Costantini has pointed out multiple times that tremors are one of the toughest symptoms to go and is usually last, but in some patients he adjusts their levodopa dose while they are taking B-1 and is able to improve this symptom further, up to the point of tremor elimination at the best outcome. Some people on this forum have reported tremor improvement while using thiamine. I think Kia and GioCas have reported very significant tremor improvement from thiamine, but they have both been on it for over a year and a half. I think GioCas is at almost the three year mark.

Art

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Hi Art,

Thanks very much for the detailed response.

Where did you get the information/evidence regarding the neuroprotective record of high-dose thiamine treatment?

If it was from a research paper, could you provide a link?

Jeff

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Hi Jeff,

That information was told to me by Dr. Costantini, but on the thiamine FAQ page, I believe Dr. Colangeli also confirmed some of it.

As far as studies, I have listed Dr. Costantini's studies that pertain to thiamine in the following post, but he has been involved in many more studies with other research groups.

healthunlocked.com/parkinso...

You will have to scroll down the page past the 50% point, but before the 70% point to see the list of study links. I'm not sure if the information you are looking for is in there, but that is all there is for us to go on. If you are looking for more than that, you will have to wait for more definitive studies, but like all supplement studies related to PD, the human ones are far and few between. I consider Dr. Costantini's thiamine studies to be more like clinical reports as opposed to scientific studies which are often times looking for the mechanism of action, whereas he is essentially reporting on how his patients are doing as far as thiamine use. He has contacted the MJFF to see if they would fund the scientific studies that would be needed to find out the method of action of thiamine in PD, but they did not even reply to him after multiple inquiries. Not even a form letter reply. The studies would cost millions of dollars and he is not in a position to fund them, so once again we are left to our own devices to try and do what we can with the available information. He has over 2,500 patients in Italy and an additional 200+ remote patients on thiamine and I thought that would have gotten the interest of the MJFF, but obviously it did not.

Art

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Easily, I have a research report that Doc Costantini sent to me

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Art,

Thanks again for a detailed response. I'll have a look at the link you've given.

I would not have been surprised if MJFF had said "no thanks", but I am surprised that they didn't even reply.

CliniCrowd would seem to be the natural platform for this research (e.g. mannitol trial). Has there been any thought or action in that regard?

Jeff

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Ranico contacted me awhile back and was talking along those lines, but I haven't heard any more.

I can see a major problem with that approach though. Because it can take some people up to 6 months to find their optimal dose, as has been seen time and again on this forum, I am doubtful that without being in constant contact with Viterbo, many will not do well without the needed guidance to establish the optimal dose.

It looks like they had a hard enough time with mannitol and patient compliance and dosing seemed to be a problem based on their results.

Art

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Art,

I think you are right about the problems with the mannitol trial. Lessons need to be learned from that before new trials are undertaken.

Regarding a high-dose thiamine trial, I guess the ideal arrangement would be to use the CliniCrowd platform but limit participation to patients of Dr. Costantini et al. (currently 2,500 + 200). That is, make use of the platform to provide some structure (and services), but avoid the uncontrolled nature of the current mannitol trial.

But I can see that the people at CliniCrowd might not view this as an ideal arrangement!

There is also no guarantee that a significant number of patients would agree to participate.

Jeff

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Instead of arguing, why don't you give it a try? What have you gotten to lose? It's just a vitamin B water soluble without side effects! Or you may continue with your conventional meds. It's that simple.

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Correct you are Despe. I say again, " What you have to loose is nothing compared to the surety awaiting you with Parkinson's. It baffles me, saddens me when I see refusal to make B1 do its miracles for PwP simply because they think it is a scam. A scam that no one profits from? Come on! "

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I couldn't agree more, Roy.

But let me tell you : it is of common experience to me that people in the heavy stages of the disease refuse to try even mannitol - which is what ? Sugar.

Some people desperately hang to their disease, like one would do to a desperate love. Amazing. I have no explanation. Maybe the Freudian "death drive".

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I hope you dont think that anyone being cautious or questioning results means they consider it a scam. I dont and I-am impressed with the humanity of Dr Constantini.

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Hi Despe,

That's interesting. You (and RoyProp) see it as arguing, whereas I (and I think Easilly) see it as discussion.

I guess it's because some things (e.g. tone etc.) don't get conveyed accurately in this type of exchange.

Jeff

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Please do not give uninformed information. People can be hurt by your uninformed post.

B1 has many possible side effects. Please see the following.

What are the possible side effects of thiamine (Vitamin B1)?

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have a serious side effect such as:

blue colored lips;

chest pain, feeling short of breath;

black, bloody, or tarry stools; or

coughing up blood or vomit that looks like coffee grounds.

Less serious side effects may include:

nausea, tight feeling in your throat;

sweating, feeling warm;

mild rash or itching;

feeling restless; or

tenderness or a hard lump where a thiamine injection was given.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088

emedicinehealth.com/drug-th...

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bailey_texas- there are side effects to all supplements when taken incorrectly. but the pharmaceuticals that we take can produce side effects even when taken as directed. people should be in tune with their bodies, and if they notice a potential serious side effect, they should discontinue it, wait until they recover, and try a lower dose. its just common sense. i dont believe in trusting everything mds tell us (except dr constantini - lol) we have to look out for ourselves.

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The post I replied to said there are no side effects with B1. I don't understand the unquestioned devotion to a man who has "proven" nothing. B1 does seem to have helped people. But to only trust the words of only one doctor out of millions is worship and like a cult. Your words not mine " i dont believe in trusting everything mds tell us (except dr constantini - lol) ". This is plain silly. When i see a double blind study that has result positive to the use of B1 i will use it. By the way i tried b1 and it had no effect on me. So it does not help everyone.

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bailey_texas--im sure you know that "lol" means "laugh out loud". no sense of humor???

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did not see the lol sorry

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ok. no problem.....

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lol lots of love to us all. c

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It takes 3-4 months. Did you give it that long? What dosage?

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Bailey

It must be Groundhog Day.

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Good to be aware of a possible allergic reaction, but people can be allergic to anything. I know two unrelated people who are seriously allergic to vinegar. If that is the worst you can come up with for thiamine it ain't much. Shall we compare to the adverse effects of dopamine agonists?

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I was only trying to inform people of possible side effects. The post said there were none.

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Uninformed information? No, Bailey, I have consulted Dr. C. for my husband, and B1 injections are working! I wouldn't advise anyone on any kind of therapy unless backed by medical expertise, such as Dr. C. What are the results of all these scientific trials over the years? If you want to wait for MJF scientists to find the CURE, please let us know. A lot of money invested in such organizations and hundreds of employees employed to give you the CURE!

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Why are different points of view or questions of clarification considered arguing?

I dont intend to follow all the people on here with claims who say “what have i got to loose” . I want anecdotes that stand up to scrutiny.

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jeffreyn- and it wont be "proven" because there isnt any money in it for the pharmaceutical companies, because there is no patent to be had. so, no money is going to be put into clinical trials.

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Hi jujulini,

Academic groups have done this kind of research. Here is a recent example:

"Clinical and metabolic response to probiotic administration in people with Parkinson's disease: A randomized, double-blind, placebo-controlled trial"

clinicalnutritionjournal.co...

Jeff

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Been on thiamine for 5 months. My companion agrees my tremor has reduced. Now only occasional instead of frequent. I have reduced my levdodopa intake as well.

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Hi Roy! I'm not getting the kick that I had after week 2. Don't know what's going on. Worked my way up to 4 - 500 mg capsules thiamin hcl at breakfast, and 4 more at lunch. I cut back to 3 at breakfast and 3 at lunch. Just ordered another 300 capsules from Vitacost $29.99 incl shipping. Just too many PWP saying good things about the Dr Constantini Protocol. How this has flown under the radar for so long really baffles me.

Thanks Roy for getting the word out.

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I upped my dose to six capsules from four. My symptoms started to return. I moved to two. No improvement. I returned to four capsules with success.

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I tried the Solgar 500mg Thiamine HCl and it upset my stomach. Has anyone else had that problem? I’m now taking Allithiamine, 200mg 2x per week. No gut issues but I cannot say that it is alleviating any symptoms, my main symptom being tremor. Thanks for your post - John G

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Also on Solgar. Had intestinal issues. Took 10 days off problems persisted but less. Resumed thiamine again (1.5 gms) with oregano oil for the gut. Slowly improving on all fronts including tremor. Stick at it

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Some member of this forum put it down, …it took more than a hundred years so that the simple VIT C be recognized by the “modern” medicine as the main treatment against scurvy. I do not intend to wait even a day more for the Thiamine.. I am taking it and I feel much better. That is enough..

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royprop_ exactly! i was thinking the same thing. why are people commenting that their meds dont work, or theyre having side effects, etc., and havent tried the thiamine. if their md hasnt recommended it, and its not a recognized "drug", some people are wary of something alternative. i just dont get it......

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I have been on thiamine hcl for two months and my score on the UPDRS has gone from 41 to 29. Instead of deep hopeless depression I feel like a real person again.

I can't imagine why anyone would hesitate to give it a try.

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Hi Celtis,

I am very glad to hear of your good results with thiamine!

Would it be possible for you to add your thiamine results to the following thread about people who are taking thiamine? There are quite a few good reports there now and it would be nice to see yours there also!

healthunlocked.com/parkinso...

Thank you!

Art

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Hi there,

Could you tell me which brand of Thiamine you're using? thanks!

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Hi Bibsy, I am in South Africa and it was difficult to get thiamine hcl mainly because amazon won't deliver to South Africa. I get 300mg tablets from a biochemist who has a small business making up supplements and vitamins. If you want his contact details let me know.

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I feel blessed with 4g / day stopping progression, freeing me from symptoms. I dread to think where I would be in the future with only standard Park meds.

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Dear colleagues and friends, I will all be frank with you: we are in s***, so we say here in Italy.

bbc.com/news/health-42633871

Giving us to each other does not help.

With respect and friendship for each one of you. :-)

Gio

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giocas- note the quote from pfizer---"We have made the decision to end our neuroscience discovery and early development efforts and re-allocate funding to those areas where we have strong scientific leadership and that will allow us to provide the greatest impact for patients."

they left out...."and our wallets".

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jujulini is true, but I find them quite honest in this decision. They have not had any results, it seems. This worries me.

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If thiamine were a prescription drug the result would be in all the headlines.

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Sooner or later it will break through..for Parkinson’s, and they may put it in the lists of prescription drugs, especially the i.m. thiamine. When the time comes, I intend to observe the grotesque being in a good physical shape and enjoy... :)

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Yes. This society is founded on production for profit. We need to get out of the relations of this society. The productive forces are massive. Most work too long and never see an iota of the capabilities of those productive forces (maybe some cheap commodities and goods every month or so). It’s no conspiracy by pharmaceutical companies. It’s not greed either. Even Fox’s noble efforts are limited by this barrier to discovery and trials. Finance, whether profit or nonprofit, faces the barrier that any deployed capital is done so for the sake of profit. So I think while there will still be breakthroughs under existing relations, it could be much faster under another society, preferably one where we are not limited by pieces of paper.

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I’ve been on B1 for a couple of months. 2g per day. My tremor is still there but better. I’ve had a couple people respond that they noticed I’m hardly tremoring. Also no constipation at all and my urinary incontenance is completely gone too

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I am taking oral doses of B1. I started out with 1 gram and then worked my way to 3 grams. I corresponded with Dr. C and he approved this approach. I didn't take the video because I don't know how to do it. I also take sinemet 10/100.

My problems were tremors both arms, drooling, facial tremor, lower voice, lack of smell, some trouble holding food down. It's all better now with the exception of lack of smell. My tremors, facial and arms are almost non -existent now.

I was at my regular doctors office the other day and mentioned to the nurse taking my blood pressure that I had PD. She said she never would have known looking at me. My UPDRS score last fall was 40. When I saw my movement specialist last month she reduced it to 27.

I realize that we are all different. I'm not telling anyone to take this treatment but I wanted you to know there are others experiencing relief.

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Hi attyj,

That is really great news!

Would it be possible for you to add your results to the who is taking thiamine thread where the forum members have been posting their thiamine results. I can do it for you if you want, but if you do it then your icon appears next to your post instead of mine and this will make it easier to find your post in the future if you post it.

healthunlocked.com/parkinso...

Thank you!

Art

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Art, could you do it. I am computer illiterate.

Jim B

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Yes, I will, Jim and thank you very much for the quick reply!

Here is a link to your post in that thread!

healthunlocked.com/parkinso...

Art

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M fr. B acco

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Thanks for liking my very scientific reply!!😂 not sure how that happened!😊

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😂👍

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It does work for me, boys and girls! I'm much better than a year ago. I do not take anything except Thiamine. The c/l and the amantadine ,two motion disorder doctors prescribed last year, already expired and I threw them into garbage.

Yes, if my dose is a little higher I get skin rash on my abdomen and maybe the tremor comes back stronger. I adjust my daily dose between 0.5-2g/day, sometimes with 1-2 days breaks based on feeling and the intensity of tremor. No more constipation, no more urinary urgency and frequency, no more anxiety and depression, no more extra saliva, very good sleep and much less REM with ugly dreams and the most important - CLEAR MIND and thinking so I can do my job as a software engineer. Also the fatigue is gone. I have a spring gun to exercise my hands. Last year I could not do a single push-now I can do 50. Do I need confirmation by scientific research!? Yes, it will interesting, but otherwise I don't give a shit!

Good luck everyone!

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Yes! 😀

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Fantastic!! If there was to be a scientific research for B1, it wouldn't be in our lifetime.

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Hi ion_ion,

I've had PD for 17 years. Young Onset. Started in 2001 when I was 31. I'm interested in seeing how thiamine might affect my symptoms. I'm also takin a daily regimen of standard Parkinson's meds.

I have some questions for you

1. What is a good email address for Dr. Constantini, or of someone who works with him in his clinic?

2. Where and how did you get IM thiamine cloridrate (which, I believe, is the type Dr. C. recommends) for your IM injections? And how much does it cost?

3. What type/brand of oral thiamine do you take and where do you purchase it from? How much does it cost? Also, what is your daily total dosage, and what is your dosage schedule?

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carapetata@libero.it

I do not know about injections (I heard 2 times 100mg a week) but myself I take Thiamine HCL Solgar from amazon 14$ 100 pills of 500 mg.

You can find better deals in other places. I take 1-1.5 g/day, with some breaks of 1-2 days depending how I feel.

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berkeley-parkinsons,

These three posts may answer many questions you may have about thiamine/B-1 usage in PWPs:

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

The average intramuscular injection is 100mg per injection and these are given twice a week, but sometimes this has to be adjusted up or down based on the patients response to the initial dose. It is the same with oral dosing, they are very individualized so it is not a case of one size fits all, all of the time!

In the US, some forum members have reported that aluminum is added to the injections, but one forum member, JulieGrace, has reported she has found a supplier in Northern California who claims their product does not contain aluminum. The cost for the injections seems to vary significantly and I think forum member, Despe may be a good source for information on that subject as she has researched extensively for her husband!

As regards oral thiamine suppliers, Dr. Costantini suggested the one that ion_ion mentioned, but Vitacost offers their house brand one at a slightly less expensive price and then there is also the option to use pure thiamine powder from many of the usual bulk suppliers. Although the bulk powder has no fillers, it is bitter and as such, will need to be mixed into something else such as a smoothie or sports drink or yogurt in order to make it more palatable. The oral dosing is done before breakfast and again before lunch and it is taken everyday along side your regular PD meds.

There are currently over 50 members taking thiamine on this forum, but the majority of them are taking it orally. There seems to be a pattern developing showing that the members who stay in touch with Dr. Costantini while trying to zero in on the dose that will produce the most benefit, are the ones that have done the best in the shortest time. Once the optimal dose has been found, it is purported to be effective for a long time and you should only need minimal contact with Dr. Costantini from that point forward. The posts links above will answer many more questions for you.

Lastly, if you decide to go ahead and contact the doctor, please use the translator recommended by member Xenos as it seems to be slightly more accurate than Google Translate. Dr. Costantini speaks Italian. It may be best to include both the English and Italian version in your email because there are other doctors who are at his office that speak English fluently, but using the translator should expedite communication both ways.

deepl.com/translator

Art

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in my opinion the only way to measure the gains, in the absence unfortunately of a marker of PD, is the UPDRS test, in the time of 5 years we can compare the dat scan.

Non-motor symptoms like costipation but also the others do not appear to me to be influenced by levodopa.

If there were a precise marker of the progress of the PD the search would take giant steps and this discussion would not take place.

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I agree. Regular meds have a proven track record, and their purveyors should hang their heads in shame. B1 could not be any worse, and it seems to deliver great improvements with no side effects, a no-brainer.

The only danger is folks jumping from bandwagon to bandwagon. I am on Amino’s and LDN. The aminos took a couple of years to balance, and the LDN is in the process. I’ll give it a year or so to get optimal, then probably introduce B1.

It took decades to get into this fix, sorting it may take a while.

We are grateful to you for sharing, and taking the flak.

Thank you, Peter

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If it can be useful for discussion: It is known that ldopa can not influence non-motor symptoms such as chronic fatigue, intestinal disorders, bladder disorders and dementia. So anyone who really has PD with the resulting non-motor symptoms and wants to determine if he can have improvements from the use of b1, can easily establish it. For my personal integrity I can not see a thing and say I have not seen it, sometimes it is hard for me to accept some things and admit that I was wrong. It happens but I have always survived.

According to an ancient principle: it is true if it is true for you.

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I agree Roy, what is there to lose trying thiamin or mannitol. Compare it to 'on/off times' and twitching. Prescription drugs I am very wary of being allergic to so many anti-biotics over the years.

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