thiamine follow-up and review: Who is... - Cure Parkinson's

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thiamine follow-up and review

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Who is taking Thiamine HCL and who is taking Allithiamine? What dose? I chose to use Thiamine HCL and believe it provided better results.

REVEIW:

From documents received by Roy direct from Dr Costantini, a neurologist

copy

"Generally, the minimal starting dose used in the treatment of several neurodegenerative diseases is a 100 mg injection twice a week or 4 grams each day taken by mouth. If in time these doses were eccessive for that patient, it would happen that, after an initial improvement, he would start noticing a certain effectiveness of the therapy and then the recurrence of the symptoms previously regressed… You can also observe palpitations, tachycardia, increased anxiety, irritability, insomnia. In this case, we can suspend the therapy for a few days and agree with the prescriber about the reduction strength of the drug taken (my phone number: +39 3385682926, my email address: carapetata@libero.it, my professional study number: +39 0761304260) We usually halve the dose.

Over the past 5 years, we have also treated at higher doses approximately 2000 patients, of which 1500 suffering from Parkinson’s disease. We have never observed the slightest betrayal of the common laboratory tests or no clinical signs of suffering. We detected two cases of urticaria, two of generalized itching. In one case we had to stop the treatment because it was causing vomiting at each administration."

Other:

Replied by Art (California ) on 07/24/2017

In reply to Mary M. (Arcadia, Ca),

Hi Mary,

One group was in California and the other was in Italy. Both groups came to the conclusion that their specific treatment, not only halted disease progression in PD patients, but actually reversed motor and non-motor symptoms! I know that is a heck of a claim for PD and so it made me want to contact either of these two groups to find out if they were accepting patients.

I tried to contact the California group first since that seemed to be a simple thing to do, but I was told that the neurologist who was the lead researcher for his group, had passed away and none of the other researchers from his group were continuing the research so it essentially died with him.

Failing that I decided I would try and contact the research group in Italy by email. To my surprise, the lead research neurologist contacted me and sent me three clinical research studies that he had done over the past 5 or 6 years. I told him about my friends with PD and he told me it would be ideal if they could come to Italy to his clinic, but he said that even if they couldn't come to his clinic, he could still try to treat them via email. He said he needed a copy of their medical records and a short video of them talking and a short video of them walking. He said the videos were not for him, but rather for the patient to watch every now and again so they could have a basis for comparison as time passed.

Only one of my friends decided to try this doctor's protocol, but the first problem he ran into was that none of his doctors were willing to give the twice weekly injections and he even checked in Mexico to see if he could get them done there, but he didn't have any luck there either. At that point, I wrote the doctor again and asked him if it would be possible to take the supplement by topically applying it to the skin with DMSO? He wrote back and said there was no need to go through the inconvenience of having to apply the supplement with DMSO, as my friend could just take a very high dose of the vitamin supplement on a daily basis and while he said it might not work as well as the injections, it would probably halt the disease progression and likely reverse some of the symptoms. He told me he had treated several of his PD patients who were opposed to twice weekly injections with this oral method and he said it worked very well for them.

Armed with all of this information, one of my friends decided he wanted to give it a try and so he first ordered the supplement in a pure bulk powder form with no additives. He started on the protocol that the doctor set out for him. He was a bit hit and miss at first, because he started to feel improvement in the first week and he started slacking off on his dosing which soon had him feeling bad again. I should mention here that the first symptom that improved for him was anxiety. He said this anxiety made him feel bad everday of his life and within two weeks of taking his supplement mixed in Gatorade, his anxiety level dropped way down to where he felt pretty comfortable again.

In any case, my friend started on this supplement last November and is still taking it because he simply says he feels better with it and without it he could tell that his PD was definitely progressing at a fairly quick pace whereas now he does not feel that his PD is progressing and some of his symptoms are better.......including the anxiety.

One of the reasons that I felt my friend would slack off on taking his supplement was because he has to mix the bulk powder in Gatorade and this is not always convenient, so I found some high dose capsules of this vitamin and he started taking those on a more regular basis than the powder, but recently he told me that he wasn't positive, but he feels like the bulk powder is more effective than the capsules and even though it is a little more trouble to take the bulk powder, he is going to go back to it when he runs out of the capsules. One possible reason that the powder may be working better for him is because it has no fillers of any type while the capsules are gelatin and then there are additives in the capsules for various reasons which may work against the active compound.

Mary, if you want to know more about this, I can find the links for the studies I have seen as well as a couple of YouTube videos that show some of this neurologist's patients before treatment and awhile after treatment. In corresponding with this doctor he told me he has treated over 100 PD cases with this protocol and only had one patient who could not tolerate it as she would throw up right after she got an injection.

Lastly and also of importance, this is not a cure and the patient still needs to take their regular meds. If you stop taking the vitamin, all symptoms return and the disease continues to progress again. Based on what my other friends with PD have told me, their doctors are not open to this whole idea and will definitely "not" do the injections for them. One of my friends took all of the studies I gave him so he could show them to his doctors to see if they would monitor him if he started taking the supplement and they flat out told him no and not only that, they wouldn't even look at the studies........they said they had no time to be reading worthless studies, but they are quite fine with prescribing drugs for him in which they know he will end up a drooling, shaking and demented mess!

Art

Replied by Mama To Many (Tn) on 07/27/2017

Dear Art,

Thank you for taking the time to share this information on treating PD. How wonderful!

I too can be skeptical that something as simple as a vitamin could bring "too good to be true" results, but having seen dramatic results with Thiamin with a sheep, I will share it to encourage.

A few years ago we had a newborn lamb that was very sick. My son brought him in from the field because he was behaving in a very disturbing way. He was arching his back and writhing, perhaps he was having seizures. His spine seemed to be moving in a way that you would not expect to see an animal's spine move. It appeared to be something neurological. We quickly began researching and found that a thiamine deficiency in newborn lambs could could a neurological disorder - polioehcephomalacia that would have these sorts of symptoms.

I actually had some thiamine tablets on hand so we crushed them and added them to water and gave it to him orally with a syringe. His symptoms stopped in less than 30 minutes. It was astonishing.

~Mama to Many~

Replied by Art (California ) on 07/28/2017

Hi Mary,

Since your brother does not want to do prescription meds, but is fine with vitamins and supplements, please look into Mucuna Pruriens (MP) for him. Here is a recent study that suggests low dose MP may be as good or better than prescription levadopa/benserazide which is typically prescribed for people with PD, but MP does not have the dyskinesia side effects that prescription levadopa/benserazide can have in some patients. These side effects can be as bad or worse than PD symptoms.

High dose MP had similar effects as levadopa and was similarly effective with a better safety profile.

neurology.org/content/early...

There are other studies relating to MP and PD that you can search for.

One point that Dr. Costantini made to me is that if a person let's the disease advance too far before attempting to do something about it, there may be a point where a full recovery may not be obtainable. This is not to say that you can't improve your symptoms if there are too many, just that your chances for best improvement are correlated to earlier treatment. Every patient he treated definitely showed improvement in symptoms, but people he treated early on in the disease process seemed to have a better chance at the best recovery.

As I mentioned, there are many supplements and vitamins that are likely to be useful for people with PD if they are willing to make the effort, but many people only want an easy way and sometimes it takes significant effort on the patients part if they want to try the natural route.

Art

Replied by Art (California ) on 08/03/2017

Hello to all who are interested in Dr. Costantini's vitamin add on protocol for people with Parkinson's Disease. In a recent email from him, he sent me the following link which has almost all of the information that he shares with his patients including studies (3), thiamine dosing, videos of patients before and after treatment as well as time line results and most of it is available in Italian and some of it is also available in English.

You may have to search through the link in order to find all of the information, but it is worth the effort! Here is the link:

ultimaedizione.eu/parkinson...

In the videos, you can see that his patients are at varying degrees of disease progression and some are in the "severe range" and still show dramatic improvement by just adding thiamine/thiamin/vitamin B-1 to their standard PD prescriptions meds.

In any case it is worth reviewing and or sharing in case you happen to have a loved one or friend with PD who might benefit from adding Dr. Costantini's protocol. It is easy to obtain, relatively inexpensive, apparently quite effective for many people with PD and all with a very impressive safety profile! Pretty hard to beat that!

Art

Replied by Art (California ) on 08/10/2017

Hi Paula,

The dose my friend used was determined by Dr. Costantini, once he reviewed my friend's medical history. He started him at 4 grams total per day. He started at 2 grams at breakfast and 2 grams at lunch everyday and then Dr. Costantini adjusted his dose after two or three weeks and some feedback from my friend.

Initially he used pure powder form mixed in Gatorade to try and lessen the bitterness. I tried it for awhile myself just to see what it was like to take it. It is bitter, but for me it was easilly tolerable. After sometime, I found 500mg capsules and my friend switched to those to make it easier to take when he was away from home, but even at that dose, it required 8 capsules a day total. More recently my friend told me that he felt the pure powder might be slightly more effective than the capsules, so I asked Dr. Costantini about that and he told me it should be the same whether capsules or pure powder. In any case, my friend said he prefers the pure powder because he feels it is slightly better than the capsules, but he is currently taking both. I imagine one reason the pure powder might be slightly better is since it has no additives or fillers of any type and also your body doesn't have to deal with all of those gelatin capsules.

I hope that Mary from Arcadia California keeps us updated on her brother if he starts. I'm not sure how it will work for him because he doesn't take any Parkinson's medications and according to Dr. Costantini, it is required for the patient to continue to take the Parkinson's prescriptions meds along with the thiamine in order to get the best results, so it will be interesting to see how her brother does.

Art

earthclinic.com/mobile/answ...

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partial translation page ultimaedizione.eu/parkinson/

Parkinson. Costantini: with the Viamina B1 also a great saving of resources

Parkinson's Special , Latest news / 1 October 2016 - 17:41

The dott. Costantini, a neurologist from Viterbo, since 2011 has started, first in Italy, the therapy for the treatment of Parkinson's disease through the administration to patients of massive doses of Vitamin B1.

Dr. Costantini, a few days ago we interviewed one of his patients in Potenza who has been treated by you for two years. What is the therapy you have prescribed to your patient?

This patient of Potenza was already many years who had this disease. For eight years he had not undergone any medical treatment, partly because Parkinson's disease did not cause him excessive discomfort. At one point he had disturbances of balance, he could not stand well on his feet, and then he had abandoned all work activities and sports: fishing, the search for mushrooms and truffles. When I first visited him I prescribed three intramuscial vials a week of vitamin B1. Slowly, it has improved at least 50% compared to the scales that follow for Parkinson's diseases. At the next check, we added levodopa which led to the almost complete disappearance of symptoms.

You have been prescribing this therapy to your patients for over 5 years. What are the results obtained so far?

The results obtained are exceptional. Using vitamin B1 alone, not associated with other medicines, a clear improvement in patients is achieved. And in addition to providing a clear improvement of the patient, stops the progression of the disease.

What are the first symptoms of the onset of this neurodegenerative disease?

At the beginning, most patients have a very rigid body shape and slow down of all movements, as well as loss of facial expression. It is also recognizable in the early stages.

in reply to

D: Oltre la Thiamina, quali altri farmaci sono necessari per rallentare la malattia?

Ci sono quelli classici, come la levodopa, che non provoca nessun danno al paziente a lunga scadenza. Poi, ci sono altri farmaci che si usano normalmente nel Parkinson come la dopamina agonisti e altri farmaci più potenti che sono stati resi disponibili di recente. Ma, comunque, voglio precisare che questi sono tutti farmaci sintomatici che non arrestano la progressione della malattia come invece è capace di fare la Vitamina B1.

Q: Beyond Thiamina, what other drugs are needed to slow the disease down?

There are the classic ones, like levodopa, which does not cause any damage to the long-term patient. Then, there are other drugs that are normally used in Parkinson's such as dopamine agonists and other more powerful drugs that have been made available recently. But, anyway, I want to clarify that these are all symptomatic drugs that do not stop the progression of the disease as it is able to make Vitamin B1.

lempa_nik profile image
lempa_nik in reply to

RoyProp, One small quibble: issues of word order in the last sentence led to a garbled translation. If you move "la Vitamina B1" right after "invece" in the Italian, then Google Translate renders the last sentence much more sensibly as:

"But, anyway, I want to clarify that these are all symptomatic drugs that do not stop the progression of the disease as Vitamin B1 is capable of doing."

(Our Italian friends can tell us whether the sequence "...come invece la Vitamina B1 è capace di fare" is permissible in Italian.)

Xenos profile image
Xenos

Thank you so much, RoyProp.

I am in my 6th week of thiamine hcl.

Shakesabunch profile image
Shakesabunch in reply to Xenos

Any benefit?

Xenos profile image
Xenos in reply to Shakesabunch

A fantastic week or so, all symptoms, motor and non-motor alleviated. But then it is as if the benefits had stopped. I was diagnosed one year ago, and I guess my symptoms (slowness, sleepiness, rigidity, anxiety, loss of smell...) are not that heavy yet. Hence the difficulty to form a valuable opinion.

Anyway, I definitely want to go on with thiamine hcl. I wonder if the dose is optimal for me (100 mg, IM, every third day).

stepan13 profile image
stepan13

2 months, 3-4 grams, HCL, so far – no noticeable improvements. i'll play with the dosage

Erniediaz1018 profile image
Erniediaz1018

Thank you RoyProp. Haven’t started using yet but will definitely give feedback when I do.

Juliegrace profile image
Juliegrace

I am in my sixth week of thiamine HCL injections. After the second week I reduced the dose from 100mg to 80mg on the advice from Dr. C. (I was having difficulty sleeping the nights of the injections.) I am in touch with his assistant, Dr. Erika Trevi. Prior to the injections I took 100mg allithiamine daily for a month and I felt that I had a positive response to the allithiamine. I felt stronger and just better overall. I can't quantify it more clearly than that. I plan to write a longer post in the next couple of weeks after eight weeks of injections.

reedboat2 profile image
reedboat2 in reply to Juliegrace

How are you obtaining the injection? Did you find a cooperative MD? Thanks -

Juliegrace profile image
Juliegrace in reply to reedboat2

Yes. My PCP is a ND and is very enthusiastic.

JANVAN profile image
JANVAN

Interesting >>> can you say where I can buy Vit. B1. powder ?? (because I feel that I have also difficulty to support (all) these tablets)

I've already wrote an e-Mail to a Doktor for Injections, waiting for answers......

in reply to JANVAN

I do not know

KERRINGTON profile image
KERRINGTON in reply to JANVAN

Banyon Botanicals

JANVAN profile image
JANVAN in reply to KERRINGTON

Thank you very much !!

KERRINGTON profile image
KERRINGTON in reply to JANVAN

oops ! I replied before my morning coffee....sorry, I was thinking of mucuna powder, not vit b 1 powder, which Banyon does not have.

Juliegrace profile image
Juliegrace in reply to JANVAN

I have found this company to have reliable products and reasonable prices. I don't know if they ship internationally.

purebulk.com/vitamin-b1-thi...

JANVAN profile image
JANVAN in reply to Juliegrace

Thank you very much !

I'm so glad, that I discovered this forum;,,, a lot of interesting posts and people answer very quickly.

Also an advantage that I get the most answers in the calm (for me) late evening hours in Europe ; so I can analyse, interprete and concentrate me better on the posts.....

Skydome profile image
Skydome

Hi RoyProp, is there any advice from Dr. Constantine as to whether Thiamine may be taken together with PD medication such as Sinemet or separately leaving some time between one and the other? Thanks!

in reply to Skydome

Yes. Take your meds..no time between necessary

Farec profile image
Farec

Hi. I am on day 2 of 1g Thiamine HCL twice a day. This dose was suggested to me by Dr Constantini after I contacted him for advice on appropriate dose for weight etc.

in reply to Farec

What is your weight?

Farec profile image
Farec in reply to

66kg

in reply to Farec

ultimaedizione.eu/costantin...

“In 2011 our team was working with dosages based on the body weight: 60 Kg corresponded to 600mg of vitamin B1, to be taken orally and yielding marvelous results: the elimination of exhaustion and all the symptoms that accompany it”.

in reply to Farec

66kg = 146lbs

"...1g Thiamine HCL twice a day."

Doc. Costantini explained as follows:

"we use thiamine hydrocloride intramuscular phials or tablets taken by mouth. Generally, with the oral therapy we start with 2 grams each day to be taken once a day in the morning, in order to increase the dose later consequently to the results obtained. The oral therapy is as effective as the intramuscular one. Some follow-ups of the results are always necessary"

KERRINGTON profile image
KERRINGTON

I've had PD since 2008, and my symptoms got worse 3 yrs ago re extreme fatigue, right side tremors, gait issues, and anxiety, right arm/shoulder tenseness/rigidity. ..no meds except natural supplements taken AND 1/3 tsp of mucuna upon waking. I've been on allithiamine for about 6 weeks. I started at 50mg 3x a day, and noticed i had more energy, less anxiety, and less tremors, though if I didn't take the thiamine everything returned. Eventually 2+weeks ago, I decided to take 300mg a day since I figured some people were on 2 grams a day of Thiamine HCL oral. Since I'm still playing with dose I won't know for sure what's what, but so far....the allthiamine has helped most with physical/mental energy, shoulder tenseness/rigidity, anxiety, and to a lesser extent with tremor . If I DON'T TAKE IT I REGRESS.

in reply to KERRINGTON

Before T-HCL I used allithiamine with good results at 100mg/day. Much better results after I started 4g/day, T-HCL. My severe constipation was totally resolved that first week.

KERRINGTON profile image
KERRINGTON in reply to

I am switching to T-HCL after I use my last bottle of allithiamine...just so hard to believe that one needs 4 grams. I should have more info by June, maybe sooner if I forego my last allithiamine bottle and jump into T-HCL.

in reply to KERRINGTON

Doc. Costantini explained as follows:

"we use thiamine hydrocloride intramuscular phials or tablets taken by mouth. Generally, with the oral therapy we start with 2 grams each day to be taken once a day in the morning, in order to increase the dose later consequently to the results obtained. The oral therapy is as effective as the intramuscular one. Some follow-ups of the results are always necessary"

KERRINGTON profile image
KERRINGTON in reply to

Thanks, 2 not 4, and I probably will start with one first to see how it affects me.

in reply to KERRINGTON

"Thiamine administered intramuscularly is 100-140 times stronger than the equivalent oral dose, depending on the personal patient's absorption. So, for example, to have the clinical effect of 1 im injection once a week, we have to administer 2 grs orally each day for 7 subsequent days.

Kind regards,

Antonio Costantini"

Gioc profile image
Gioc in reply to

according to my experience and what I read: The high doses of thiamine are necessary to obtain the results with PD, otherwise I would not have the PD since the one contained in the food would suffice.The thiamine hcl for injections is sold in vials of 50mg, 100mg and also to 150mg for other purposes, such as the cure of beriberi, and also solves problems related to alcohol, its use is very well known by doctors for many years. (In some countries in Europe, thiamine injections do not need a prescription like in Germany or Spain, while in Italy it takes, the mysteries of the European bureaucracy).

The tablets depend on the capacity of the intestine to absorb thiamine hcl, so the dose should be adjusted in a slightly personalized manner. However thiamine hcl which is water-soluble in the body lasts a short time and perhaps this is its strong point compared to other forms of thiamine for long-term use. I did 2/3 injections a week (T-hcl 100mg) without problems, every now and then I jump a week when I feel it is too much, (symptom: a little too awake in the evening) Then after a while you experience, of course with the doctor who explains things to you is easier and you are quieter, but what you want: It is so.

For me it works!

I thank you Roy for opening this door, allowing everyone to know the thing and benefit from it.

Thank Roy!

in reply to Gioc

Hello Dr. Constantini,

Thank you for contacting Solgar Vitamin and Herb and sharing your findings. The information has been forwarded to our Research and Development Department.

We truly wish you the best of health!

Solgar Public Relations

KERRINGTON profile image
KERRINGTON in reply to

Ooh, thanks SO much for that extra info which I've been trying without success( till now ) to figure out !

JANVAN profile image
JANVAN in reply to

So Roy ...., don't you use anymore allithiamine ??

Can one nevertheless use it to have a stronger effect of the thiamine-HCL ??

in reply to JANVAN

I don't use but have also considered adding.

Celtis profile image
Celtis

I have been taking 130mg thiamine tablets 3 times a day and I certainly feel better for it.I lay in the bath that first night (usually I lie in my evening bath feeling nothing but extreme exhaustion) and on that evening I felt well. I haven't felt like that for years, maybe 5 years. It was such a happy surprise, and so soon! I plan to move on to 4g a day as soon as I can get it.

It is not easy to find though. Where do you buy it?

And thank you for this post. It seems really important and it is so good to get detailed information.

I'll report on my progress when I get going.

in reply to Celtis

Amazon - Solgar Vitamin B1 (as thiamin HCL) 500mg

Lifeextension.com - send them a special order request

Celtis profile image
Celtis

Thank you. I find this site so helpful.

KERRINGTON profile image
KERRINGTON

I'll think about it....right now I have so much wonderful information to read, and try, thanks to you and others, esp Roy.

Roy,

I followed your directions to this page from the reply that you left for me in the other thread. I was not sure where to post inside of this thread, but when I saw my name already in this thread, I thought this might be the best place to post it. I am, Art, from the post above who was describing my friends experience with the high oral dose of thiamine as directed by Dr. Costantini from Italy. If this post is in the wrong place please move it to where it should be.

I was also in contact with Dr. Costantini on behalf of a friend with PD. Dr. Costantini certainly comes across as sincerely wanting to help people living with PD and he is very generous in terms of freely sharing the information about his protocol. My friend started on 4 grams (2+2) of thiamine hcl as recommended by Dr. Costantini. My friend decided to try the bulk powder first in order to avoid all of the fillers and gelatin associated with the capsules. He did try the capsules also and felt that the pure powder may be very slightly more effective, but the capsules are easier, especially when traveling. He noticed improvement well within the first two weeks of supplementing. I don't have PD, but I tried taking the thiamine at 4 grams per day to see if I would have any adverse reaction at such a high dose and the only thing I noticed was possibly a little anxiety, but it may or may not have been from the B-1 and had I not been looking for anything, I doubt it would have even been a thing.

I have not seen my friend in awhile and do not know if he is still taking the B-1 for his PD. He did initially get benefit for what he said was severe anxiety followed by an improved feeling of strength in his legs as well as a reduction in chronic back pain which he felt was associated with his PD. He also said he felt his balance was slightly improved. For the time that I was following him, he told me that he never noticed any improvement in his hand tremors and when I asked Dr. Costantini about it, he said that tremors were often times the last symptom to show improvement, but if the protocol was followed exactly and everyday, the tremors should improve over time.

A major problem with my friend was that he started slacking off on his meds and the thiamine when he started noticing improvement. He also likes to drink a lot which can deplete thiamine and is definitely counter productive to Dr. Costantini's protocol. At one point, Dr. Costantini adjusted his thiamine dose and his PD meds to try and see if he could improve the hand tremors, but there was no improvement. Dr. Costantini said that at a minimum, if my friend would continue with regular dosing of meds and oral B-1, it should stop the disease progression and reverse motor and non motor symptoms, but you would have to take the meds and thiamine for life. Stop the thiamine and the symptoms will return and disease progression will resume My friend was taking 2 grams of thiamine in the morning and 2 grams at or near lunch.

I have two other friends with PD who are considering adding thiamine to their drug regimen, so I am trying to gather more information and anecdotal reports to share with them. I've been doing a lot of reading about PD and potential alternative supplements for my friends and have compiled a list of supplements which may be helpful based on studies and abstracts I have read. Obviously thiamine is in the top five of that list based on Dr. Costantini's clinical reports as well as the California research group which was conducting very similar research with very similar results, although they did experiment with higher doses and frequency than Dr. Costantini did. Their results were very similar to his, unfortunately, the lead researcher at the California clinic passed away and nobody else at their clinic is carrying on the research. Another point worth mentioning is that there is another clinic in Italy using his protocol now. If I remember correctly Dr. Costantini said that although his clinic is where the research started, the other clinic in Italy is now collaborating with him after he shared his protocol with them. This explains why he references so many patients treated with thiamine for PD and other diseases now. I am very impressed at Dr. Costantini's willingness to share his research and knowledge with the world. The list of studies associated with his name is very impressive!

In any case, I am looking for results and comments using thiamine to treat PD symptoms.

Art

Look for it to stop progression and resolve all symptoms within eight weeks. The exception is tremors. Tremors are resistant and it may take several more months if T-HCP is going to have any affect on tremors.

The doctor recommends the patient to continue with meds, like carbidopa/levodopa.

This is not a cure. You will need to continue this protocol for life.

in reply to

Roy,

Have you passed the 8 week mark of daily oral thiamine? If so, have all of your motor and non-motor symptoms resolved other than tremors? Have you noticed any improvement at all in your tremors?

Art

in reply to

Ninth week. I am thoroughly happy. I am looking for more improvement with tremors with continued use.

in reply to

That sounds really good, Roy! Updates are very helpful!

Art

My friend did take the thiamine for more than 8 weeks that I am aware of and while he did find improvement, not all of his symptoms resolved. His tremors definitely did not improve, but all could easily be attributed to not staying 100% on schedule as well as his consumption of alcohol which will definitely put a heavy drain on thiamine level. Yes, definitely not a cure, but more effective than standard meds alone.

Art

in reply to

Just some thoughts about capsules and bulk thiamine powder. My friend, who tried both the capsules (500 mg each) and bulk powder thiamine HCI for his PD, told me that he felt the powder was slightly more effective than the 500 mg capsules. I imagine this could be because of a lack of fillers and gelatine capsules with the pure powder form. Given the amount of capsules needed to achieve the proper dose, the amount of fillers and gelatin being consumed for the rest of your life is very significant. For a while he used both products. Powder when he was at home and capsules when he was away from home. Cost wise, the PureBulk powder was less expensive than the Solgar capsules but more expensive than the Vitacost brand capsules. To give an example, the Solgar 500 mg Thiamine HCI is currently $20.70 on Amazon for 100 capsules or about $.414 per gram and The Solgar brand is $14.93 from Vitacost for the 100 capsule jar or about $.30 per gram. The Vitacost brand of 500 mg Thiamine HCI containing 300 capsules is $30 or about $.20 per gram.

Bulk powder Thiamine HCI at 100 grams for $24 or $.24 per gram. Obviously the capsules are more convenient, but long term consumption of the fillers and gelatin might also be a consideration since, if it works, will be a lifetime commitment. The standard PD meds already have gelatin and fillers also, so that is probably another point worth considering in the big picture.

I tried both the capsules and the bulk powder just to see how I would react to it at 4 grams per day. I didn't notice a difference between the two, but I was not trying to treat anything, just mainly checking to see how I tolerated it. The powder is bitter and has to be mixed with something. I chose a small glass of Gatorade to help cut the bitter taste. Still a little bitter, but tolerable for me. I would mix both daily doses at one time in one glass or bottle and then drink half at Breakfast and the other half at lunch. If I was going to do it long term, I would mix a weeks worth of powder in say a quart of Gatorade and take one seventh of the bottle total per day or roughly 2 1/4+ ounce per serving twice daily just to make it easier to take and leaving the bottle in the refrigerator between uses. The powder dissolves easily in Gatorade and you can make it more concentrated if needed so that a bottle could last longer than a week........just something to experiment with to find what works the easiest. I may experiment more with mixing if one of my other friends with PD decides to try Dr. Costantini's protocol. I imagine a little mannitol in the mix would go a long way toward cutting the bitter taste down as well as adding to total mannitol intake if using mannitol for PD simultaneously.

These are the "other ingredients" in the Solgar Thiamine HCI:

Dicalcium phosphate, microcrystalline cellulose, vegetable cellulose, vegetable stearic acid, silica, vegetable magnesium stearate and vegetable glycerin.

I imagine that daily consumption of these other ingredients over years are likely to have some effect of their own at the dose taken.

Art

ruff1 profile image
ruff1

Hi really interesting info, my husband was diagnosed nearly 12 years ago, we do everything to keep him as healthy as possible- diet, exercise- he’s takes Stelevo 125 6 x a day along with Asilect and Ropinerole. Wearing off and suddenly freezing are his main problems. Do you think Vit b will help ? He weighs 68kg how much each day would he need to start on ? 😀

in reply to ruff1

Yes

2g at breakfast

2g at lunch

ruff1 profile image
ruff1 in reply to

Thankyou 😀

kalyan48 profile image
kalyan48

hi Roy after getting very good result with 4 gms of thiamine, you contemplated raising the dose to 5 gms/day - has it been done &

can you please update on thiamine experience

in reply to kalyan48

Did not raise.

Stopped c/l. Third day and ok

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