I'm one of those people here in the states who wrote to Dr. Costantini (in 2016~2018) on behalf of several friends living with PD. I just typed up an email full of questions, sent it even though I didn't really expect to get a reply.
I was very surprised to wake up the next morning and see his reply email in my in box. I was expecting it to be one of those computer generated replies it came so quick! He was very open about what he was doing and very helpful in terms of answering questions and he even sent links to his videos and clinical reports detailing his use of thiamine in his PD patients and he encouraged me to stay in touch and let him know when my friends were ready to start his protocol if they decided to do it. He told me to let him know if I have any more questions as he would be more than happy to answer any questions, any time! I let him know that out of my friends with PD, probably only one would be able to actually go to his clinic in Italy. He answered that it was no problem at all, that he could probably work with them via email and make adjustments to their regimens if he deemed it necessary.
He told me that his studies which he sent as a link, I should print out and give to my friends to show to their doctors as they may be willing to do the treatment for my friends.
Well two of my friends tried that and their doctors would not even look at the few sheets of paper! One doctor told my friend it was BS without even opening the envelope or having a clue what the treatment was! Both friends, have different doctors but it was like they were reading from a script, because they both said almost the exact same thing. One of these friends went to another neurologist who was reportedly a well known teaching doctor and when my friend asked him to look at the papers and let him know what he thought. The doctor told him that he had no time to waste reading these papers which , again, this doctor had no idea what was on these papers.
When my friends told me what happened, I was sort of surprised , but sort of not surprised! These are doctors who are too busy running their practice to be real doctors! They had no idea what these papers said and they were all three unwilling to even give them a cursory inspection. God forbid there might be good information on those papers!
I was talking to my friend who had taken his papers to the two different doctors and I just looked at him and said, 'these are the people you are entrusting with your health and life'? He had no answer. I said your doctors are telling you that they have no time to look at something that could have a major impact on improving your symptoms and tell you it is BS without even knowing what it is. Instead they are quite happy to have you continue with meds that are doing absolutely nothing to even slow your disease progression and they already know how that scenario is going to play out for you and they just don't care! Again, my friend had nothing to say other than his doctor had talked to him like he was an idiot for even asking for the doctor to look at these papers!
I asked him, 'if we were in Italy and I wrote to this one doctor, who is also a teaching doctor, who wouldn't even look at the papers, do you think he would have even replied to my email '? My friend answered with a no. I told him, ' and this is who you want to entrust your life to'? He said, I don't feel like I have much choice!
It was a little disturbing to me to see these guys who are calling themselves doctors and all they seem to want to do is prescribe the standard meds and send their patients on their way as quickly as possible! I'm sure there are good neurologists out there, but they seem to be scarce!
I was taught growing up that doctors were to be trusted and respected because they make people well when they are sick and they are kind and compassionate. In this whole scenario, the only person who seems to fit that description of a doctor is Dr. Costantini! He was more than willing to help in anyway, he answered all of my questions and he never made me feel stupid or that I was wasting his time. Oh and he didn't send me a bill either!
To Dr. Costantini, I say thank you very much for your generosity and willingness to help patients and strangers alike and for your compassion, understanding and kindness in doing so!
Dr. Costantini is in a class by himself as far as I can see!
All you said is very true and I endorse it. The doctors that treat PD do not deserve to be called neurologists , since they don't know the root cause of the disease. They only know the list of medicines developed so far for the symptomatic relief of PD. Some of them have even written books which in my opinion is waste of time to read. Most of them know only about FDA approved drugs and are fully ignorant of the alternative therapies. I hate to go to the so called such neurologists. Dr. Costantini is off course an exception. I have also corresponded with him. He responds quickly irrespective of the fact whom the asking person is. I am living in a country where the drug manufacturers give big gifts to the doctors for prescribing their drugs. These doctors and the Big pharma will never want the cure to be invented. It's a shame for the medical and scientific community that we rely on ldopa after half a century of its discovery.
The only beneficiary of this situation are the big Pharma and the do called neurologists and movement order specialists.
Doctors are for the most part dedicated people who's life work is to help and or cure the sick. if you had a cut on your leg that need stitches would you go to a medical doctor or would you go to a man on the side walk that has a sign on his back that said i do stitches for 19.95. i thought we had chased all the Doctor bashers from this site.
Most of the doctors I have come across are butchers. Bailey tell me only one doctor out there who has come to know the root cause of PD. PWP have become source of income to them. I know people with PD who remain untreated are far better than the ones who take the notorious Sinemet (Which slightly subside the symptoms at the cost of contracting dyskenesia). Most of the neurologists have only myopic view of the treatment and limited only to the list of few medicines manufactured by big Pharms. Big pharma and the so called neurologists lie in the same bed. Believe me bailey you have been better off without Sinemet!
If someone, company could find a cure if PD not only would they probably win the Nobel Peace Prize but be rich beyond belief. Richer than the founder of Google who has the gene for PD and whose mother has PD.
But finding a cure needs research and money . These companies don't take risk by investing money into something of which return is uncertain. Making investment in Ldopa based drugs that suppress symptoms is an easy way of getting returns. Tell me why Pfizer halted their PD research and laid off 300 employees?
Yes and no .... yes it can be the bottom line but don’t discount dedicated researchers who are working tirelessly here,in the UK and elsewhere trying to find a cure . Check out Dr. Fahn .
I agree that some people are truly dedicated and work hard. But unless they are backed up by some rich monetary support, their research will be handicapped. I know some of studies which could not be progressed due to lack of financial support
I was DX in the year 2012. I soon learned one med leads to a second leads to a third...an endless merry-go-round. That learned reading the experience of PwP.
Thanks to Doc. Costantini I have hope not to ride that merry-go-round.
in fact it is true, all the doctors have the purpose to help people to heal, the fact is that up to now never has been able to stop the course of the PD but only to alleviate the symptoms.This pushes people to look for something different that stop the course.This is the point, then each person has esteem of his doctor if this has worked well.I estimate my as you esteem, I think, yours doctors.
Typical! Many doctors lack of basic knowledge when comes to vitamins and supplements. Many health issues are caused or exacerbated by deficient or insufficient levels of vitamins & minerals such as Vitamin D, B12, B6, Folate, Magnesium, but few doctors pinpoint the cause and refer to blood exams.
It's encouraging to know that there are still true doctors who are called to be healers and sincerely want to help. The problem as I see it in the US that doctors are trained by pharmaceutical companies which provide for them continued education classes at upscale beach resorts, beside other numerous incentives. On top of this, the current malpractice insurance would not cover a doctor who prescribes a treatment not listed in PDR (if the patient sues him). So, physicians here are basically bound to the drug industry and even if there was a natural cure, they probably would not prescribe it for fear of a potential lawsuit.
According to vit. B1 information: "Overdosing on thiamine, or vitamin B-1, is rare but can cause severe symptoms. In some cases, high vitamin B-1 levels can cause a rapid, irregular heart beat and low blood pressure. These symptoms can lead to cardiac problems. Some patients will develop a low blood pressure and convulsions."
And also this warning: "Taking too much of a single B vitamin, such as vitamin B1, can cause an imbalance in the other B vitamins. In severe cases, the imbalance may cause deficiencies in the other B vitamins, which can cause a wide variety of symptoms."
It might be that the above warnings are related to thiamine injections, however it was not specified in the article and from what I understand there are rare cases of thiamine hypersensitivity when treatment can cause adverse reaction.
Interesting! I asked my doctor to test my vitamin B levels last week and he said that the testing was expensive and that you can’t overdose on B vitamins so I should just go
Have to disagree on that since recently my neurologist tested me for levels of B6 and they turned out to be 3x over normal range. My only symptom was increasing numbness and tingling in my feet - I've had it for a couple of years already but recently started getting worse. It got significantly better once I've discontinued B6.
Thanks so much for sharing that!!! Maybe I should push for the lab tests. I dropped ALL my supplements a couple of months ago and my labs went to “normal” and “stable” from my doc being concerned and doing monthly blood testing. I was kind of surprised that he declined my request.
You are very welcome. To be honest if my doctor would say that you can't overdose on B vitamins I would try to find a different one. Even though excesses of most B vitamins get harmlessly excreted in urine, unfortunately synthetic folic acid (which is considered to be exceptionally safe and is in many B complex formulas) can be very problematic for individuals with MTHFR genetic variants which I have, see link: drbenlynch.com/folic-acid-s...
Have you tried this approach to treating this disease by taking large volumes of VItamin B1... I am trying to find someone who has actually tried this and has had some positive results... Let's hope that this doctor is on the correct path and he may have found a way to reduce the cycle of aggressiveness of this disease.. thanks for sharing your comments withall of us.. take care rick
You're right- no prescription is required, but physician would have to document in patient records that B1 was the recommended treatment instead of a prescription drug.
Why go to the doctor you are not going to follow his advice . You don't need him. Do you want him to say it is ok so you can sue him when it does not work. Doctor's are professionals who are bound by rules and only do what is proven to work.
Of course, there is no incentive to cure sick people as they are the source of income for medical industry. It's so much more profitable to keep patients sick - so there is obviously a conflict of interest.
Please tell me how to get in touch with this doctor
My friends with PD have to fight tooth and nail in order to get their doctors to go along with them when it comes to any supplements. I sent studies about how vitamin D might be helpful for PD with one of my friends to show his doctor so he would be willing to test his vitamin d levels and the doctor just shrugged and continued talking about something else. My friend ended up going to his regular doctor who tested him and found he was deficient at below 20 ng/ml. He took the results and the studies back to his neurologist, threw them on his desk and told him he needed to start taking vitamin D NOW!, because he was deficient. The doctor looked at him stunned and told him to start taking vitamin D and he would monitor him from then on!
My other friend says that whenever he reads about a supplement that might be helpful for PwPs and asks his doctor about it, his doctor gives him a look like, "oh no, another idiot"!
It is sad when you have to fight your doctor every step of the way just to take something that may actually help you!
He would have also said it by A. Fleming. if he had presented himself with a green mold on a melon and said "hey this mold makes a powerful antibiotic that I have called pennicilina" And it was true. For this we are all alive after an influence Ah but this mold was a medicine or a supplement?
Make sure your friend takes Magnesium and vit. K along with vit. D, see following from Dr. Mercola: " if you opt for oral vitamin D, you need to take supplemental vitamin K2 and more magnesium. Taking mega doses of vitamin D supplements without sufficient amounts of K2 and magnesium can lead to vitamin D toxicity and magnesium deficiency..."
Bailey actually you need in some extent! At least here in europe, a doctor has to prescribe specific blood exams such as Vitamin D, B12, B6, Folate which can verify any deficient or insufficient blood levels, before initiating supplemention, otherwise paying the blood exams on you own turns out to be quite expensive. I was diagnosed with very low blood levels of Vitamin D, Folate, B6, Glutahione before starting with supplementation. Oversupplementing when not deficient may be detrimental to health.
Why go to the doctor you are not going to follow his advice . You don't need him. Do you want him to say it is ok so you can sue him when it does not work. Doctor's are professionals who are bound by rules and only do what is proven to work.
I'm doing software for complicated machines and sometimes it is not easy to find bugs in my own programs. The humans are the most complicated machines on the planet and it is much harder for doctors to debug something designed by somebody else. I've seen 5 doctors and some of them gave me contradictory advise and diagnostics. Two of them were assholes but one , the most competent, is very nice and I remained with him. So just being a doctor does not mean he/she is a god. The best doctor is the one who is open and can communicate with the patients. I told my last doctor two weeks ago about B1 and he listened to what I said and he said it sounds interesting but he did not advise me to take it or not to take it but he was curios about the results in case I'll take it.
Not disagreeing that we need Vitamin D, but I don’t know anyone, with or without Parkinson’s, who is told they have enough Vitamin D. My question is how do they even know how much we need? The answer is they don’t, really. They just know if it falls dangerously low, people get rickets, which is uncommon in the US and Europe.
If you are a PWP, here are many reasons why it will be worth taking vitamin D and making sure your serum level is well into the reference range of 30~100 ng/ml!
Vit D rehab for me (Dr Rx’d 50,000 IUs for about 7 days) brought levels from 30 (low normal) to 100 NG/DL and increased my mood tremendously; other intangible benefits co-exist. That dosage is a prescription strength only and was monitored by lab work.
That is the first time I have heard of a doctor going that high that fast! I've seen doctors go to 50,000 iu once a week or twice a week, but then it takes weeks to get your 25 OH d level up there. I've seen many studies on vitamin D and they never seem to go quite that high on daily dosing either.That dosing took your serum level to the top of the reference range very quickly! I am impressed by your doctor...very progressive!
Thank you for posting that information as it answered a question I have always wondered about, can the 25 OH d serum level be brought of very quickly by using short term ultra high dosages of vitamin D ! Apparently the answer is yes!
It is not enough to just take some vitamin D, you need to know if you are taking enough to get your 25 (OH)d serum level well into the reference range (30~100ng/ml) in order to obtain all of the health benefits that vitamin d has to offer PWPs!
Did one of your questions ask for the dose needed to stop tremors? What was his answer?
• in reply to
Roy,
Just wondering if you stay in touch with Dr. Costantini, because he was always open to answering any questions and making adjustments in dosing.......including your meds. He always got back to me within a day or two, which is fast considering how busy he must be! He told me (as of months ago) that he now has patients from many other countries and since the other Italian clinic has started collaborating with him, the number of PD patients being treated with thiamine has grown to well over 1,000 and with that a substantial increase in their knowledge base and understanding of thiamine usage in PwPs.
Art
• in reply to
I don't
• in reply to
Roy,
I highly recommend that you contact Dr. Costantini by email so you can give him the specifics of your current regimen and your status in terms of symptomatology. He then can make suggestions for your specific case and discuss with you directly a plan of action. He can then give you a better idea in terms of tremor reduction expectations and time frame.
I think that given your status of strictly following Dr. Costantini's thiamine protocol for about 9 weeks will be important to him as this allows him to better understand your current status.
Art
• in reply to
Roy,
I forgot to mention to you that one of the things that Dr. Costantini mentioned to me was that sometimes if the dose turns out to be too high and needs to be adjusted down, tremors and some other symptoms could possibly worsen temporarily until the dose is adjusted.
I also remember him saying that sometimes after weeks of use, they sometimes need to adjust the dose down and he usually does that when he reviews your progress or lack of progress with regular check ins. Even though the dose may have been fine initially, you may require less in time.
I'm sorry I didn't remember to tell you that before, but it has been awhile and he would just randomly throw these facts into his replies if he thought it might pertain to my friend that I was talking to Dr. Costantini about.
Art, so Dr. Costantini doesn't charge anything for you, or anyone, to email him? And he continues to adjust your dosage via email? If you take a trip to Italy to see him in person, does he charge for the visit & how much? Does he recommend a certain brand of thiamine hcl? Just a few more questions, I think....you don't have PD, you are just researching for your friends? Have they had PD for a long time and are they or have they been on C/L? I have been diagnosed for almost 15 yrs.but because of exercise & a few other supplements, I have been able to keep my C/L at 4 or sometimes 5 a day. I read on someone's comment that the thiamine doesn't work as well on someone that has had PD for more than 15 years. I'm trying to figure out if it's worth it, since I'm doing fairly well, to drastically change my protocol at this point, but thiamine sounds like the way to go.
He has never talked to me about charging me or my friend for a consult and he did do a dosage adjustment to what my friend was taking. You will have to ask one of the members here at HU, who has actually been to his clinic what he charges as I have never been there. If I remember correctly he suggested Solgar 500 mg Thiamine capsules, but my friend used the bulk powder and a different brand of capsules though.
It's really great that you have been able to maintain yourself so well using exercise!
Yes, they have been diagnosed for at least 5 years, but I'm sure the PD started well before that. I do not know what meds all three of them are taking.
As far as that 15 year mark, I had the impression that he was just using that number as a rough example as PD seems to advance at different rates for different people, much like many neurological disorders. You can see from his videos that one or two of the patients were very advanced.
Since Dr. Costantini now says they have treated many hundreds of PWPs, it seems he might be able to give you a better idea than I can about whether at this stage it would be worth it for you to try thiamine. At a minimum, it is something you can keep on the back burner until such time as you feel you might want to try it.
Given the very good safety profile of thiamine, it at least seems worth considering.
If he is a well liked Doctor then he would have very little time to read and respond to emails. My doctor does not read the letters i write on mychart his nurses do and they only give him the ones they can not handle. I can say this about Dr Costantini because that is just the way it is.
Sounds like you need a different Doc. My father's PD doc is a little more hands on and enters all her notes into the computer as she talks to me and my father. She also response directly to my emails/posting on their portal.
With that said, I do feel like she is typing into her computer too much when speaking to us. However, she does hear us, just not making direct eye contact all the time.
I do not say this to defame the man it is a fact of life. His time would be wasted reading emails and letters. If he is doing research his time is too valuable to waste reading mail. I would not want him to waste time reading mail I want him to do his research and find me a cure.
But you are defaming him. He hasn’t claimed he has found a cure. He is claiming that a protocol using thiamine provides relief from many of the symptoms of PD. I read your post about all your “accomplishments”. Sorry, I didn’t note any degree in medical fields or even high school graduation.
You must think that an education some how makes you smart. All a education does is give you tools to work with. But if do not have the ability to use them you wasted your years in school.
All he told me when I asked him that question was, the tremors are last to go and he said they can be stubborn, but he said all motor and non-motor symptoms go unless you are very advanced as in 15 years or more since diagnosis, but he said , even in these advanced cases, there is still very significant improvement in symptoms.
- Do Dr Costantini have protocols that differ from 100 mg two times a week ? (I am beginning my 9th week)
- We have a french neurologist, Dr Villafane who is a lot like your description of Dr Costantini. He developed and uses a nicotine intradermal patch therapy (I'm french but I do not live in France). The protocol is complex and need to be monitored by a doctor. He has 10 years of experience with his protocol. His PD patients are delighted, his colleagues in the Neurology Dept just hate him.
There was a large scale trial that ended in 2017, but nothing has been published yet AFAIK.
Last March, I started taking thiamine HCl intermuscular injections twice a week of 1 mg along with the vitamins recommended by Dr. Constantini. One of my friends lives in Rome and was able to help translate for me. He truly seems like a good guy. I saw the impressive videos that he filmed of his patients and was hopeful. I had not started taking levadopa yet, so I tried just with thiamine. I did not feel much improvement after one month, so I began taking levadopa. I am taking 1 x 3 times daily 25/100 carbi- levadopa. I feel like my fatigue is much better than it used to be but I am not sure how much the thiamine is helping me. I did stop taking it last summer for about two weeks and felt worse so I went back on thiamine. So I feel that it does help at least slow or halt the progression down somewhat. But my results are far from the miraculous improvements of the patients on his videos. Now that more people are trying it, it will be interesting to see how many folks actually do improve to the point of having no symptoms anymore. I am thinking about switching from IM injections to oral pills to see if it's better. And I wonder what is the B vitamin formulation to take in conjunction with the thiamine. For me, my condition varies so much each day except for one pattern and that is I feel best in the morning until noon and then it's downhill from there. Does anyone feel the same way? It's difficult to figure out what is the best combination of supplements and medication to be optimal.
By the way, thanks to everyone contributing to these blogs. Really helpful exchanges of information. Sorry I haven't spoken up sooner.
Yes I meant 100 mg. I have played with a bit more and a bit less, but didn't notice the difference. I'm curious if anyone has done both IM injections and oral supplements enough to compare? Dr Constantini told me injections were better but I wonder if having a daily oral consumption would produce a more consistent effect.
Hello Redwood Park..I have a question for you... I am a white male who just turned 70 last year in July and I was diagnosed as having Parkinson"s disease in March of 2016 which was a little over two years ago... I have been reading all of the articles regarding the benefits of taking large quantities of VItamin B1 pills to offset the symptoms associated with this crazy disease.. My major problems associated with having Parkinson's has been my loss of Balance and my voice is getting softer and softer no matter how hard I attempt to speak louder and no improvement accomplished to date.. Are you aware of any improvements shown in these two areas by taking these vitamins... If you can answer this question it will really assist me in planning to talk with your doctor regarding my future plans to give this a try by myself or go to my personal doctor and request B1 shots if necessary.. thanks in advance for your assistance .. take care rick
I’m just learning about Vitamin B1 so no answers. But I just complete in June a 4 week “LSVT Loud “speech therapy program for Parkinson’s and it made a huge difference. My voice changed considerably going from a soft yet hoarse/gravelly sounding speech with some slurring to really clear sounding voice with expression at the end of 4 weeks. Videos showed a marked improvement in my vocal fold strength and closing without a gap and with the elimination of a mild vocal tremor. My mask like expression reduced by 30%-50% and my swallowing improved as well!
When I slur, or my hoarse/gravelly voice reappears or if I am asked to repeat something it’s usually because I’ve skipped a few days of my “ daily voice exercises”. Like all therapy it’s hard work and at times seems fruitless, but if you stick with it and do all the homework and daily practice, it’s amazing what this program can do to improve the quality of your life.
He sounds great, I'll have to have a look at his videos.
My dad's doctor is pretty much 'if it works for you, go for it' but there's so many scammers on the internet that I can understand why they're skeptical when presented with papers. But if it's published in a well-known journal they should read it! His neuro, on the other hand, very much works inside the box, you take abc pills then progress to xyz, no discussion.
I hate to say, but we can't rely solely on doctors or even the experts. They can only offer what pharma provide, which isn't a cure, unless you get a really good one who keeps on researching when their training is done. There are studies done out of the box that get published, it can come down to us to read and understand them. I feel like a molecular biologist and chemist these days! It's fascinating stuff though.
My point is that if the doctor will not even allow 2 minutes of his time to look at the papers that the patient brings and does not know what is on the papers, then what kind of doctor is that?
When you search PubMed for Dr. Costantini, most people will be very surprised to see how many studies his name is associated with! I definitely was!
It behooves one to keep up with relevant research in order to stay a well prepared person who knows what is good for his patients. Refusing to so much as glance at proffered research bespeaks of someone who wrongly thinks he knows it all.
Was the link only for your close friends or can I look and see what my doctor may say. As you said about your friend doctors, it may give be an idea if my Doctor is who I want to be seeing?
My health is important to me. And if what he says could work for me, I'd try would be what any body I think would say.
I posted the link for anyone to contact Dr. Costantini via email. Being the gracious doctor that he is, he previously told me to have anyone contact him regarding his thiamine protocol!
Why do you fell the need to bash all doctors is it to make this doctor look better. Please post a link to a double blind study that shows what he does works.
Bailey we are here to share our experiences with each other not to bark at one another like dogs. I am sorry but you often use a derogatory language which is against the norms. Please look into your behavior and manners and behave yourself. Everybody has self respect and nobody should be allowed to play with it. I am very sensitive person. I cannot reply you in your language due to my different brought up. At most I can leave the forum if my posts bother you
You reap what you sow. You give respect and you will receive respect. Your posts about doctors are more disrespectful than any words i could use. Calling a doctor a butcher is not disrespectful? Strong emotions need strong words. Would you call a doctor a butcher to his face. You also imply that all doctors have no morals. By the way Big Pharm does not exist. It is as best a conspiracy theory.
Your statement "Sinemet (Which slightly subside the symptoms at the cost of contracting dyskenesia)" is totally inaccurate Sinemet does not induce dyskenesia it is a symptom of pd and if you get it is not a result of using Sinemet. Also Sinemet controls my symptoms almost completely with little or no side effects. Do some research here or on the net.
Please go to your safe place and leave this forum and take your disrespectful words with you.
I haven't used these words for all of the doctors. please read my comments carefully. I am talking about the doctors with myopic views. All the doctors are not bad for God sake for example Dr Costantini is an exception. Bailey believe me you need to go to a psychiatrist in addition to neurologist.
Bailey, please read the research and know that dyskinesia is definitely caused by prolonged use of Sinemet. Maybe your doc is uninformed. My doc who isn't on the cutting edge and very skeptical actually cut me back on Sinemet when I got it because it does cause dyskinesia as per my neuro-movment specialist and other research. I appreciate that you are trying to protect us from scams but when all our neuro docs have to offer is medication (there comes a time when they don't work) we become interested in new treatments which they either don't TAKE the time or HAVE the time to do the research on. I guess that is what we are trying to do. I believe there good and bad doctors out there. I choose to believe that when a licensed doctor spends most of his career working on a cure for PD and has documented positive improvements its worth the time to research it.
about 10 years ago iwas dx with prostate cancer i found a site called YANA (you are not alone)found an article relating to HIFU tratment which was performed in Belgium not in UK at that time i needed a refferal from my doc who said he could not give me the because it was an unknown factor in UK it was only when used stronger than normal language he relented i went had treatment when i got back with the results my doc asked me for copies of the litrature given too me in Belgium . this tratment is now available in uk
Its been almost 10 months since I have started Dr Costantini’s protocol.I am really happy with the decision I made. My depression is almost gone, no more panic attack, no fatigue, no slurred voice, no pins and needles, much less pain , much less stifness and slowness. My only main issue is dystonia when I walk fast. I have written before in this forum that Dr Costantini is one of those who really deserve to be called a Doctor. I have seen him 3 times since May last year and the last time in October he told me that I didnot need to go to Viterbo in Italy to see him again. I have been in contact with his assistant Dr Trevi since then and whenever I had a question , I got the answer whithin a day or 2.
He is really knowledgeable and down to earth.
Thank you very much Dr Costantini and Dr Trevi for your helps in the past year.
Congratulations on all of your symptom improvements using thiamine!
I have never met a doctor in my lifetime who is so willing to help his patients, non patients and even total strangers as much as he does! He seems like a great and caring human being!
He is totally different from doctors I ever met . My neurologist in London only spend 10-15 minutes for his visits. Dr Costantini spent 75 minutes in my first vist and examined me thoroughly checking the whole sections of UPDRS. My neurologist in London never done UPDRS scaling on me and when I asked he said that they wouldn’t do the UPDRS!
I live in Italy and have been visited 4 times by Dott Costantini since September 2015, and I confirm everything said by Kia here, that is every time a short video, complete UPDRS test, interview and visit on the physical state very accurate. At a normal cost even slightly less than a neurologist in northern Italy. Great doctor as I wrote.
I take 3grs of Thiamine HCL tablets divided dose in the morning and noon before meal. He advised me to take 300mg daily special brand of magnesium called “Aximagnesio “ that can be found in Italian websites or Amazon.
I also started taking Vitamin D3 with a balanced Omega3 and 6 and I ordered B12 and Folates but haven’t received them yet.
I am taking Microdose of Sinemet 25 mg morning and 25mg in the afternoon.
So is a Microdose Sinemet essentially half a tablet of 25/100 Carbi-Levadopa?
He told me to take Becozyme (B complex) and Lederfolin (folinic acid) at the time of injection. Both of these vitamins are supposed to be better than most B vitamins, as they don't get washed out in the stomach as easily. Hard to find an equivalent here in the states.
What were his reasons for the magnesium and what was special about it?
Sinemet : 12.5/50 half twice which is 6.25/25 morning and 6.25/25 around 4PM.
I am okay with B complex but not B6 .However the Aximangnesio has a very little dosage of B6, that's why I donot take B complex and instead ordered B12 and Folate.
Manganesium helps with bowel movement and has a very good effects on relaxing muscles specially with my dystonia. Aximangnesio has very specific types of magnesium salts.
I forgot to say that I have also been taking Mannitol for the past 2 months.
Thx for the info on where u get the AxiMagnesium. Dr. C recommended it for husband. I have a question I suppose I should put on a Post to all but am thinking of it now so will put it here. When I posted that Doctor C recommended 100mg of thiamine injections 6 days a week for my husband I got replies that that was a lot but yet I'm seeing people here taking grams and not milligrams be it oral or injections so really a hundred mg is not a lot is it? I know it depends on the person and what they need but in general is it a lot? Do u know?
He also takes video from patients walking , speaking... in each visit and compare and show you in the next visit.
Yes it was exactly 75 minutes as I had taken an Italian interpreter with me but later realised that Dr Trevi speaks English.So the interpreter had aslo made a note of timing as well as myself.
Having only communicated with Dr. Costantini through emails, it is really good to hear that he is even better in person!!
I would really suggest anyone with Neuro Degenerative disorders including Parkinson’s, Lewy body dementia, Huntington's disease, Multiple Sclerosis,.... to go to Italy and see him in person if they can.
I never forget that in my second visit he told me with confidence that I didnot have PD anymore and that the disease progression had stopped.He gives patients a real hope.
He told you you do not have PD anymore? But someone mentioned here that his treatment is not a cure, I also read somewhere where his treatment does not entirely get rid of PD. But if he told you don't have PD anymore - does this mean you are cured ?
I assume he wanted assure me that the PD progression stopped.
I have PD with a positive DatScan but my symptoms are well controlled.Thiamine isnot a cure but helps to alleviate the symptoms and stopping the disease progression.
No tremor , no mental fatigue unless I had a very busy working day that is even normal for people with no PD . All the symptoms reduced gradually. still I have subtle left side bradykinesia and some dystonia when cycle fast (over 120 RPM) that significantly reduced in the past 2 months.
if anyone has doubts about Dr. Antonio Costantini, ask yourself what he is doing here among the most illustrious colleagues of the highest level (third from right to bottom in the group photo). I'll tell you: the speaker for the use of thiamine in practice, as he explained in one of his interviews.
Roy, are u still taking this amount? Where do u buy? Is the pill large, and is it hard or easy to swallow ...or is it a capsule? Also do you know anything about the bulk powder?
I started Thiamine HCL on 3.24.18, 2g a day, 1g in the morning and 1g at 2pm. Yesterday was the first day I noticed some improvement including the tremor. Today was good, too.
I'll see if the things keep improving or is just something temporary. I did a B1 blood test but they told me the results will be in 10 days. I did vit D and I was low - 62, even I was taking 1000IU a day. I'll increase it to 2000IU a day.
It is now about one month since your start of oral thiamine, do you have an update on your fairly low dose ( 2 gram total/Day) thiamine supplementation! That is approximately half of what many are trying for their symptoms.
The Vit D probably aided in depression relief; B1 in all else. There are many clinicians in U.S. supporting “high normal” lab value goals for Vit D. Labs at or Above 50 NG/DL is what my (progressive psychiatrist ) aim for. Just FYI
Here is something I just added to the vitamin D thread:
An important point I neglected to mention above is that in the U.S., serum 25 (OH)d levels are measured as ng/ml, but other countries may use nmol/L as their standard. I only gave the reference range for the US, ng/ml, as 30~100 ng/ml. Here is a calculator to convert one to the other. The equivalent to 30~100 ng/ml would be 75~250 nmol/L
Wow. At least somebody posted the "secret" email for Dr. Costantini. One of the users on this website told me it was a "super secret" info and wouldn't not share and another just ignored my question when I asked for Dr.'s email address. Based on the conversation above, this doctor truly wants to help and he offers to give his email to anyone who needs help, how is his email a "secret information" that you are not at liberty to release here. Now anyone who would like to contact this doctor will do that instead of begging certain people for the info.
I had asked him quite awhile ago if it was okay to post his email on a public forum and he said it was fine, but I never posted it before that even though if you look at his studies, it is listed on at least one of them.
Don't waste words just call me dumb i have been called worse. For a " punch-drunk Rocky wannabe" i have accomplished a few things in my life.
I made straight A's through the 10 grade when i had to quit. I never studied i would just read my book and take the test. I could not finish high school because i had to work to support my mom and brother and sister. I did drywall for 20 years, heavy diesel mechanic for 7 (certified) and a licensed surveyor for 20 years. I have layed out bridges a mile long that had to be built within a 1/16th of a foot. I layed out a bridge over the trinity river in Fort Worth Texas that was 152 ft long within 1/100 of a foot horizonal and vertical.
It was the very first one in the US to be built the way it was . It had steel bands that were 160 ft long 2 ft wide and 1.5 inches thick and they were pulled to 1 million pounds of pressure.
I built my house with help from brother. We payed for everything as i went i did not have a loan on our home. It cost us $120,000 to build including $40,000 for the 2 acres of land. We were partners in the drywall work. I did most of the work by myself and he just helped with the heavy stuff. It took me 6 months to build. The economy was bad so I worked on it full time. The only things i farmed out was the plumbing,the ac the foundation and the brick work. I did all the inside work including tile, i built the cabinets, did the trim work set the doors did picture frame paneling in the den. i did the electrical work. The house has 3200 sq ft under the roof 2600 living area. That was 32 years ago and i am still living in it with my first and only wife. I also have built 3 drag race cars and 2 drag race motorcycles. The fastest bike ran a 8.95 sec 1/4 mile at 152 mph. I raced 1/4 scale rc cars. We raced on a track 250 ft long and 100 ft wide with 12 turns. I was in the top 5 racers in Texas when i quit. Both of my kids went to collage. When i was taking geometry in high school i would write proofs that did not agree with the book. My teacher would mark them wrong. I would sit down and go over them with him and it turned out i was right. This happened 10 times. My son is a member of mensa and he says i make him feel dumb when we work on cars or anything mechanical. I can see around corners when it comes to repairing or building things. Last year i bought 70 riding lawn mowers repaired and sold 65 of them. We manage to save enough money for me to retire at 62 without any worries. My wife only worked outside the home for about 10 years. She kept all our grandbabies for free until they started school. She did it for 20 years. I am a certified welder, i can mig,tig, heliarc steel, alum, and stainless.
Bailey I think you and Donald Trump WOULD GET ALONG VERY WELL AS YOU ARE BOTH IN LOVE WITH YOURSELVES.. Think about what you just stated in your response to an earlier email... I agree with this guy you really do need help!! in peace rick
The dose can vary from person to person or you may need more or less as time goes by so it is not a case of one dose fits all, all of the time. You don't need to see him, but it is helpful to have him monitor your results to help determine if any adjustments are needed.
Easilly. What are appropriate doses from your observations? Roy Prop says 4g daily but does one go to this level immediately or titration slowly up? Surely dosage depends on the weight of the individual? I WOULD write to Dr C but feel that he deserves a break! I sense that he has lots of emails to deal with and I shy away from adding to his workload 🏨
jeeves 19,
Funny you should mention that about the overload of emails......I was thinking the same thing, but I asked him before I had posted his email address on another site months ago and he said no problem, he would be willing to speak to all patients about thiamine and PD. He said he has patients all over the world now plus all of the patients from his clinic. Since this is not a cure, you can see how once he gets a PD patient he will have them for a very long time if they follow his injection protocol.
I imagine if it gets to be too much he will change his email address, but unless he tells me otherwise, I will give it out as he said to. It is listed on at least one of his studies so he is definitely not trying to hide it!
This link will take you to one of his full studies. Click on "Author Information" and you will see that he has his email address listed right there.
I don't think you can assume that 4 grams total per day is a standard starting dose because as you said, weight is very likely a factor and the fact that he asked me to send my friends medical records , videos and a current list of all medications with dosing suggests to me that he takes other factors into consideration also such as the severity of your condition. At a certain point he also adjusted my friends dose based on feedback that my friend was giving me.
I think it might be most useful for you to contact him and if he replies, you will know if he has time or not, but I suspect he will reply. He told me he has a very high priority on having as many people as possible know about the potential value of thiamine for PWPs and other neurodegenerative diseases. It seems to me he is doing his best to see to it that happens!
For anyone that intends to contact him, it may be helpful to have the following information available :
1. A complete list of "ALL" symptoms
2. Medical records
3. A complete list of all supplements and medications along with dosing schedule.
4. A diagnosis date or estimation of when you think you were diagnosed.
5. A short video (20 ~ 30 seconds) of you talking.
6. A short video of you getting up from a seated position to a standing position and then walking from that standing position (20 ~ 30 seconds)
7. Height, weight and age.
8. A video of yourself while having the pull test performed on you by someone else.
Having this information ready will be useful in your communication with Dr. Costantini and will also let him know that you are serious about considering his treatment as opposed to just being a lookie lou. Just because he is willing to talk to people who contact him does not mean he has time to waste.
The main purpose for the two separate videos is more for your use than his because he likes patients to be able to look back over time to compare how they were to how they are and the videos are very helpful for that purpose. Sometimes the changes can be so gradual that you don't realize it, but the videos are a good record as far as the motor aspects go. Good luck and keep us posted on how it goes!
thanks for sharing this information.. Have you tried the Vitamin B1 increase to date.. If you have how is it working out for you.. I think I would like to give this a try but I am a little scared of changing my meds because in the past when my neurologist has requested that I try something different I end up getting sicker as I find that my body does not seem to adjust to changes in my daily routines regarding medications...I have found that after being diagnosed with Parkinsons disease three years ago that I feel worst today then I did then and was not taking any type of medications for treatment... The side effects that I get from taking all these different meds seems to make my condition far worse than they have been in the past..
Doc Costantini does require you to continue your meds. I think preferably C/L. High dose thiamin HCL, done properly will be the greatest thing in your lifetime
And this is why it is most helpful to stay in touch with Dr. Costantini as long as you are on his protocol! If you have any problems or questions from using thiamine, he will want to know as soon as possible and then answer.
Thank you for pointing that out! At the time I posted that, Dr. Costantini had not mentioned the "pull test" video as needed, but as you stated, he is now!
I posted this the last time you asked.....this is his email address:
Dr. Antonio Costantini,
carapetata@libero.it
Art
Previously I mentioned that there was another research group in California who was doing very similar research to Dr. Costantini's thiamine research for PWPs starting about the same time or possibly a little later than he did. Unfortunately the lead researcher passed away and that marked the end of their research. I found this out because I tried to contact them on behalf of my three friends with PD.
I think what is interesting about their research is that they found similar results to Dr. Costantini even though they did not collaborate on their research and they were in another part of the world.
Here is a link to that article very briefly describing just 5 cases from their clinic using thiamine.
Of note in their five case reports is that they used 200 mg of thiamine in four of the five patients or double what Dr. Costantini uses!
Art
Gio,
I feel certain that Dr. Costantini is aware of the research group in California that used the 100 ~ 200 mg injections on their patients. In your next visit with him can you ask him if he also tried the 200 mg dosing and what he thought about it? Thank you!
Art
It looks like Dr. Costantini has released a new paper of 2 case reports on Essential Tremor and Thiamine. Dated March 2018.
BMJ Case Rep. 2018 Mar 30;2018. pii: bcr-2017-223945. doi: 10.1136/bcr-2017-223945.
High-dose thiamine and essential tremor.
Costantini A1.
Author information
Abstract
Essential tremor is a common neurological disease. The medical treatment of this affection currently involves the use of propranolol, primidone and other drugs. These drugs, however, are often not effective in reducing tremor and cause side effects in a large share of the patients treated. The treatment with intramuscular high-dose thiamine has led to a rapid, remarkable and persistent improvement of the symptoms in two patients with essential tremor. This result suggests the possibility that high doses of intramuscular thiamine may be an affordable alternative, highly effective and long-lasting medical treatment that has shown no relevant side effect.
KEYWORDS:
brainstem / cerebellum; movement disorders (other than Parkinsons)
PMID: 29602891 DOI: 10.1136/bcr-2017-223945
The following links take you to recent studies by Dr. Costantini. He definitely feels that thiamine is useful for more than just PD!
If instead you prefer as they write the newspapers here is something, where at the end of the video of this lady the doc says: "Beh! compared to before ... 🧐 "
PWPs who are using Dr. Costantini's thiamine protocol successfully in the pill or capsule form are forced to take in a lot of filler material and gelatin from the capsules because the largest currently available dose is 500 mg per capsule and if you are taking 4 grams total per day, that is 8 capsules per day . If it is working for you, and it does seem to work very well for some, it might be worth considering pure thiamine powder also. By using the pure powder, you won't get any of the filler or gelatin from the capsules. I posted the following in another thread several weeks ago, but thought I would add it to this thread because it seems like it might be relevant here and for people who may probably be taking it for the rest of their lives.
Just some thoughts about capsules, tablets 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 gelatin 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 for convenience. 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:
I have noticed the two brands below mentioned by people using Dr. Costantini's oral thiamine protocol. I don't think the fillers would be a problem for short term testing such as finding out if thiamine is beneficial for a particular case of PD, but for life time use as would be the case if it works, it might be useful to have an option to avoid or limit the amount of these fillers that a person takes in. My thinking is that the tablets and capsules could be used when away from home and the powder when at home as one possible way to lessen the consumption of the "other ingredients". Not everyone will be up to packing their own capsules as you do, but for those who are, that seems like a great way to go!
These are the "other ingredients" in the Solgar brand 500 mg thiamine hcl:
OK, I stand corrected as to fillers, although there could not be much of those other ingredients in a capsule along with 500 mg thiamine.
I originally had hoped to be able to just take the thiamine powder but it is too bitter.
The bulk powder is cheap enough but I then felt compelled to spend over $350 on a jig to make 400 capsules at a time. The jig helps immensely but it still takes most of an hour to make the 400 capsules which is a 40 day supply of thiamine at 4 grams/day. So in the end I might end up saving a little if I keep this up for a couple of years. I do encapsulate some other bulk supplements too so I suppose it is worth it but I would not recommend this approach.
A logical thing is to maintain the precision relative to the subject treated, In other words, planting potatoes in a field does not require the precision necessary to repair a Swiss watch. :-). Emh ... maybe out topic.. For information only , I do not recommend it , b 1 is also sell in pure form for Oenological purpose.
in case of prolonged blackouts for which the web does not work you could always go to the nearest brewery and get a half kilo of 100% pure b 1. and a possibly Belgian pair of beers .What an idea ?!
Yes this is all true but in the end its all worth your time because of the damage the fillers cause your blood purifying organs. And you will get used to the bitterness and different effects on your palate although it may take some time and mixing with some natural juices rather than just water.
copy: "hello Roy I was just today from doc Costantini, I asked him if I could remove or diminish levodopa, He said no, because vitamin B1 (high dose thiamin HCL) has a restorative effect on the surviving cells that will be forever as long as it is used, but levodopa reduces stress and the chemical work that the few remaining cells (for example, 10.20.30% of the total according to the years of PD passed without b1 ) have to do to produce all the dopamine necessary for the body.
He made me notice the fact that if one removes the b1 even for a week or two is not affected, but if one removes the levodopa is affected instantaneously, this precisely because the levodopa serves the few living cells to produce with less chemical effort all the necessary dopamine. The b1 saves cells from death by the disease and makes them survive long and forever stabilizing it.
According to him levodopa does not cause dyskinesias and showed me a video of a patient who he took care of was quite serious that moved everything from sitting because he took so much levodopa, after a three month b1 was still stiff but walked and without convulsions , this without changing anything in the medicines but only with thiamin hcl.
I asked him why there are ups and downs, in the days or in the cold seasons and he told me that it does not depend on a worsening, but on the variable response of the levodopa that is subject both to the diet that changes the reaction of the body to the cold. I hope it will help you even if I think you will not like it, and that is perhaps a repeating things that the doc has already said. But that he saw me in response to my questions.
The good news is that thiamin stabilizes the disease forever."
Thank you for telling us about the Thiamine. Started DR. Constantini protocol 48 hours ago with remarkable improvements. So much gratitude to this man. He has been amazing. And to you guys for putting it out there. First time in years I have real hope in my heart and see my hubby without pain.
world of difference between European docs and western docs, western docs shine when it comes to trama ceters, they have excellent mechanical skils. miss the boat when it's down to healing. theey have huge student fees, expenses, malpractice suits hanging over them, and no time to listen to clients,,,, add to date public medicine and the political fallout from that....
ii have to move out of province (Quebec) to feel the equal opportunity feeling, and I expect there other complications there... things have changed.
I was just looking at an order I placed for bulk thiamine powder from the supplier Pure Bulk that I had ordered for my friend and it was dated August 16, 2017 for a package that is 250 grams. The cost on that invoice was $54 for two 250 gram bags or $27 per bag. Today on Pure Bulk, that package that was $27 less than a year ago is now $51.50! That is an over 90% increase in just 8 months!!!
I know supply and demand can affect price, but for such a common vitamin that seems excessive at best. I wonder if Dr. Costantini's protocol is what is driving that price increase? I notice that the supplier Bulk Supply is even more expensive at $54.96 for the same size bag.
Yes, there is a significant cost premium between the bulk powder and the capsules. Your bottle of capsules equals 50 grams of thiamine in total so it will take 5 of your bottles to equal one of the 250 gram bags of pure thiamine powder or 5 x $14 = $70 compared to the $34.16 for the bulk powder on Amazon.
Vitacost also offers their house brand of thiamine HCI capsules for $30 for 300 capules at 500 mg each, so that is equivalent to three of your bottles. About 6 months ago, that bottle sold for around $20, so their price has gone up also. Perhaps Dr. Costantini's protocol is affecting the price of thiamine??????
I sent him an email and am hoping to hear back. Has anyone else had a problem with thiamine making them feel nervous and jittery? I already have a problem with that and it seems to make it worse. I only tried 500mg too. Thanks
I am taking it because my bro has PD n we have the same DNA so it can't hurt. The first couple days of taking 1000mg I felt the same so I backed down the amount to 500mg n I didn't notice the same. I've done that for a wk n have just upped it n I don't feel the jitters. Good luck.
I emailed Dr. Costantini yesterday to check in with him and make sure it was still okay to give out his email address and he sent me a reply this morning saying that it was fine and he has been and is still answering all of the emails he has been getting and he said that it was great that I was helping to get his information out!
I don't know how he handles it all, but he does and is still willing to answer these inquiries into his protocol.
I added Dr. Costantini's email address to the title of this post to hopefully make it easier for people to find it since many people ask for it. Hopefully that helps!
Since it is clear more and more people are adding thiamine to their daily regimens It is worth mentioning that Dr. Costantini is emphatic about no alcohol with the thiamine / B1 protocol because the alcohol can rapidly deplete thiamine.
That was a specific reply to one of my friends who I was transferring messages back and forth for. This friend was a heavy drinker and alcohol depletes thiamine, but Dr. Costantini otherwise states that one glass of quality wine per day is acceptable.
Large amounts of alcohol will be counter productive to thiamine treatment.
ok that's a relief (LOL), thanks Art. I can't wait to get started. Have you looked at the B3? Interesting results! Check out Simon's recent blog on The Science of Parkinson's.
Here is an important quote for anyone who is using or thinking of using Dr. Costantini's thiamine/B-1 protocol, but are not already working with him. From an email that Dr. Costantini sent me:
' By adjusting vitamin doses and levodopa doses, we can lead to zero symptoms in a short time. Meanwhile, he has the disease blocked, that is, it will not get worse. '
Art
For any one using Dr. Costantini's protocol or some variation of it, especially using the pure powder form mixed into a drink, here is a quote from Dr. Costantini in an email reply he sent to me that may be improtant:
' The medicine is bitter but can be taken with any sweet that is not orange juice, grapefruit, pineapple. '
Art
I wrote to Dr. Costantini today to ask if he would create a list of frequently asked questions (FAQ's) by his patients and potential patients that I can post on the HU forum to help alleviate a lot of repeat questions that he gets in emails over and over again. My thought was that this will alleviate a lot of the time he and his staff spend answering the same questions repeatedly and allow them to have more time to answer the questions that patients are asking that are unique to their particular case and hopefully in a more timely manner.
People have reported that it can take a week to get a reply back from Dr. Costantini these days and that to me, says that the emails he is getting are very time consuming and getting harder to keep up with so I am hoping this will be a good step toward a better experience for everyone considering Dr. Costantini's Thiamine / B-1 Protocol.
Dr. Costantini, just replied and said he will put a FAQ page together and send it to me as soon as he has it completed! As soon as he does, I will post it here!
Thank you for being so supportive. Have started the thiamine for my hubby....remarkable improvement in just 48 hours with the 6000mg a day. What a blessing and what an amazing doc...
6g may be ok according to dr Costantini's email to me. He told me after i tried 4g, to try 2g, then if that doesnt work then 5g or 6g. It takes some experimentation but have patirnce, we will all get there!
I sent this list of questions to Dr. Costantini late last night that he can pick and choose from to add to whatever is on his list of FAQs. I know it is by no means complete, but it may be additive to whatever is on his list?
1. What is the standard starting dose of thiamine?
2. Does the dose stay the same or does it have to be adjusted up or down over time?
3. What does it mean if I become jittery after starting thiamine, even at a lower dose?
4. Is thiamine compatible with all PD related drugs?
5. What is a realistic time line before symptom relief is seen?
6. Do tremors eventually go away over time?
7. What other vitamins or supplements should I take to optimize the benefit from thiamine such as magnesium, other B vitamins or vitamin D?
8. Is thiamine ever contraindicated with other health issues that a person might have simultaneously with PD??
9. If I miss a dose or a day of thiamine, will my PD symptoms come right back?
10. Are there many things I should not take with thiamine such as alcohol?
11. Are there known side effects associated with the use of high dose oral thiamine?
12. Is it better to take thiamine on an empty stomach or with food?
13. What happens if I take my thiamine later in the afternoon or night?
14. Do PD symptoms continue to improve further after 6 months of everyday use?
15. Are there some PD symptoms that thiamine does not seem to help with?
16. Will thiamine work for all motor and non-motor PD symptoms?
17. Does thiamine work for other health issues?
18. What are the symptoms if my thiamine dose is too high or too low?
19. Will thiamine have any effect on my "on times and off times"?
20. Does thiamine have any effect on sleep?
21. Is it possible to get a rash from taking oral thiamine?
22. What effects can thiamine have on mood?
23. Are there times when I should reduce or increase my dosage such as under highly stressful conditions?
24. Is it better to start at a low dose and slowly increase the dose each week, or is it better to just go to a full dose right at the start of thiamine therapy?
25. Can a person have such severe PD that thiamine will no longer be of benefit for symptom relief?
26. If I get a cold or flu, should I continue taking the thiamine?
27. How many PD patients have you treated with thiamine?
28. Are there people who can not tolerate thiamine treatment?
29. Does thiamine help with depression and or anxiety?
30. Does thiamine alleviate Lewy Body Dementia and all forms of PD?
I just got a reply to the message I sent about an hour ago asking about the status of the FAQs page and when we are likely to get it. Here is his answer:
If we're lucky tonight itself. However, give your applicant my email address. I will answer him willingly, directly and immediately. A greeting. Antonio
I just received an email from Dr. Costantini saying that he has answered the 30 questions I sent him and that he has given his reply to a friend who will translate his reply to English within a few days and then he will send the translated version.
I also recommend that you read this whole thread so you know what information to include when you contact him. This will save both you and Dr. Costantini time as well as make it easier for him to determine your starting dose and will also make sure that all of your current meds are compatible with the thiamine.
I just got a reply to the message I sent about an hour ago asking about the status of the FAQs page and when we are likely to get it. Here is his answer:
If we're lucky tonight itself. However, give your applicant my email address. I will answer him willingly, directly and immediately. A greeting. Antonio
Note that the Amazon version of the Vitacost brand is currently cheaper than Vitacost.
For people who have problems swallowing pills and capsules, Thiamine HCI can be purchased in pure powder form and mixed in a sweet liquid like a sports drink, but an inexpensive digital scale may be needed to get an initial accurate measurement of the amount to use to equal whatever dose you are taking. The powder is bitter, so mixing with water may be a difficult swallow. I mixed it with Gatorade or Powerade and it was tolerable.
Since you are taking B1 powder, would you mind posting any benefits or lack of benefits from its use in the following link/post? I am trying to get everybody's thiamine results into one post that people who are considering taking thiamine can read to get the best idea of realistic expectations with thiamine. It appears that there are many here on this forum who are using thiamine and having their results in one place could be quite useful. Please include length of use and dosage. Thank you!
I have only been taking it for a week, but will update soon. I take 2g per day ( as my weight is 53 kilo) I add it to mannitol and 100% coconut water. So far feeling I have more energy. Will keep you updated
Hey Art. I love your level of service for the sick and suffering (me). Very grateful to have met friends like you and Roy and others on this forum. Please add this to your list for its the most reasonably priced I've found yet. nutrivitashop.com/vitamin-b...
Isn't it amazing how the distrust of a new idea is blown way out of proportion under the assumption that if this is so good why hasn't anyone found this before. Your comments might give us a clue why this hasn't been done before. And the distrust presuming someone is selling something just to make money,which Dr. Contantini is not doing.
Can you see how different Dr. Contantini is from the doctors in Easilly's memo? His eyes were open to see what needed to be seen.
Art, I just received this response from Dr. Costantini (note: I am 120 pounds and 5'5"). BTW, I outlined my meds which does not include levodopa based on my concerns about dyskinesia. Here is his response:
For now, do not change your treatment. Start taking 2 grams a day of thiamine hcl (1 for breakfast and 1 for lunch). Read the instructions carefully. In particular we will need the pull test now. If there is a need we will see for levodopa. It is now well established that it is not the duration of treatment that gives late complications, but the fact that neurodegeneration progresses. Thiamine restores cells and stops the progression of the disease when you (like our patients) will never have these problems. It will be easy to bring you zero symptoms and forever. Give me news in a month or when you need it.
A greeting.
AC
General informations for the patients
(Read carefully)
The dose of thiamine in the future can be increased or even decreased depending on the result obtained.
First of all you have to take a short videotape of your face while you speak, of your walk, and of the pull test made by a relative or friend. To determine the right dose in future we will follow thi criteria.
First of all we need to say that, if the dose of thiamine used is excessive for that patient, it can determine, after an initial improvement, a worsening of his symptoms previously improved (rarely a worsening already at the first dose can happen).
In this case we invite the patient to suspend the treatment with thiamine for a week, the worsening regresses and then it can be restarted with halved or lower doses.
The right dose should not give the side effects of overdose, improve at least 50% of all the symptoms of the UPDRS scale, and bring the PULL TEST to normality (score 0). The pull test reveals almost always a pathological balance, even in the early stages of the disease. As a rule, if the examinator behind the patient gives him a strong push towards the shoulders, he / she takes a few steps behind or falls down. This symptom is only improved by thiamine being non responder to other treatments. The normalization of the patient’s response tells us the dose of thiamine is the right one.
The normal subject to the pull test is still or almost takes a step backwards.
p-oui,
Thank you for posting this! It's late now, but i will pose this as a numbered question and answer on the FAQ page tomorrow...thanks again!
I'm kind of doubtful on that idea mainly because the only group I can think of who could possibly fund such a study would be the MJF Foundation, and they have been ignoring Dr. Costantini's requests for their attention. They will not even reply with a request for any information he has about the use of thiamine for PD. Sad , but true.
You can't patent thiamine and without a patent there are probably no companies that want to risk the expense of a thiamine trial. Companies are there to make profit and the profit potential of thiamine is relatively low compared to a patentable molecule which can be enormous if it makes it to market.
Cannot patent thiamine itself but can patent as an invention the methodology or composition of treatment. Dr Costantini has registered an application for a patent with thiamine treatment since 2011 patents.google.com/patent/W...
Besides MJ Fox foundation, also European Union offers funding for innovation and research via multiple programs such as the "Horizon 2020" ec.europa.eu/research/parti...
Dr Okun replied on Parkinson's Foundation about Thiamine treatment to one of the HU members.
Yes, you can patent the methodology, but companies are going to realize that the methodology is fairly simple and the cost of the actual product that would be sold remains very cheap. People will just do what they are already doing and go ahead with thiamine use on their own.
Thank you for mentioning an alternative to the MJF Foundation! I wonder if Dr. Costantini has checked into that? Well I'm sure Dr. Colangeli will see your information and pass it along!
Besides observational studies, Thiamine treatment lacks double-blind placebo-controlled studies. Public hospitals and university hospitals with specialty field in neurodegeneration may offer the ideal environment for such trials or it can be multicentered. That could reduce the cost considerably.
The only study I'm aware of that thiamine may exert Dopaminergic activity comes from the following animal study ncbi.nlm.nih.gov/pubmed/109... in the form of Sulbutiamine which is a thiamine derivative.
".... In the same treated animals, an increase of D1 dopaminergic (DA) binding sites was measured both in the prefrontal and the cingular cortex, while no modification of the D2 binding sites was detected..."
I suggest MJ Fox Foundation are very skeptic when funding new trials. A recent double-blind placebo-controlled trial of 45 individuals with intranasal glutathione funded by MJ Fox ncbi.nlm.nih.gov/pmc/articl... produced a 100% placebo effect. "All cohorts improved over the intervention period, including placebo". That was a 3 months study!
Could it be possible that by using the internet and consulting with thousands of participants, worldwide, with less control, become as credible as the limited participants in a tightly controlled trial? Is the internet changing the way we do business? I don't know the answer to that so I must ask Amazon.
There was a recent discussion on this forum about the patent that Dr. Costantini holds for non PD use of thiamine in Italy and I want to add that information to this thread because I think it will be important for people who are considering using his thiamine protocol to understand Dr. Costantini's motivation. Dr. Colangeli saw that thread and mentioned it to Dr. Costantini who sent me a copy of the patent to try and explain his reasoning for getting the patent in the first place as he was concerned that some members might construe the patent as a possible means for Dr. Costantini to get rich at the expense of his patients. He wanted to clarify that this is absolutely not the case! As all members on this forum who have actually consulted with Dr. Costantini know, he does not charge for his email consultations. According to members who have gone to his office in Viterbo, for treatment, his office rates are competitive to below average for Italy in general.
You do not get rich by giving free consultations to everyone who sends you an email asking for information about the thiamine protocol. Even if you decided to use his protocol, he does not make one penny from the thiamine you buy in whatever country you are in!
These are not the actions of a person who's intent it is to get rich at the expense of his patients. He is dedicating a tremendous amount of his time and efforts to answer the many emails he gets and please don't get it confused, this forum is not the only email requests he gets! People write him from around the world! The great majority of these people will never go to his office, so he can never hope to grow his business and his income from these email consultations!
As I mentioned in a previous post, the patent does not apply to PD and is only an Italian patent. The actual purpose of the patent is to protect the research he has been doing on this protocol for almost a decade! Without that patent, other research groups could come along and try to claim the research as theirs!
I hope that this post helps to explain the purpose of the patent to the satisfaction of the HU members and non-members who might have concerns about it.
As far as I can tell from what I have seen of Dr. Costantini's actions, he is a very caring and dedicated neurologist who has gone well above and beyond the call of his profession in trying to help "all PWPs", that he can!
I totally agree with you! Personally, I consulted the Dr Costantini several times, for me and my mother who is PWP too. He never ask for a cent, nor did he accept any financial help.
I have never had a conversation with Dr. Costantini on that subject...it has just never come up, so I don't have any idea, but if you feel strongly about it, I'm sure you can just drop him an email to find out what he thinks about it.
The conversation I have had with him as far as what he would definitely appreciate from the members of the HU forum or any people who are benefiting from his protocol is that they let their neurologists know about his protocol and how they think it is helping them. The reason he would appreciate this is so that it may help spread word of his protocol to any doctors or neurologists who might be open to the idea of his B-1 protocol. To me, it doesn't seem to be too much to ask if you are benefiting from his protocol, but that's just me and I can't really speak for anyone else. I try and look at his end game and from what I can see, he would love for his protocol to eventually be considered as a main stream option for neurologists to offer their patients just as they might offer Sinemet or Rytary.
Rest assured I have spread the word already, from pharmacists to alternative medicine doctors our family doctor, even pharmacists out of my state--the least we can do! My husband has an appointment with a local neurologist/osteopath doctor on October 1. I will definitely discuss B1 therapy with him. I am also thinking of printing Dr. C.'s work and present it to him.
The dosage I take is a little less than 1/4 teaspoon. Still playing with the dosage because I feel it's causing me to have some dyskinesia. It is 100% pure from my post above. From following certain feeds on the forum I've gathered 40% Mucuna would be the better buy.
This is a copy of a post by Maricor828 on 08/10/2018:
maricor828
maricor828
a day ago
Im taking restore gold for 8months now and b1 for 3months now. Happy with the result. It gives back my life. 😊😊😊
3 likesReply
I just want to let the forum members know that there is supposed to be a short discussion on "The Doctor's Tv Show" about thiamine/B-1 in relation to essential tremor. I guess they contacted Dr. Costantini to get the information from him about the use of B-1 for essential tremor since he has a clinical report on PubMed about its use in two of his patients with essential tremor. I doubt they will mention PD and B-1, because they won't want to incur the wrath of the FDA or any other governing agencies!
I just checked my local guide and in this neck of the woods, it will be airing this Tuesday, September 18th, 2018 on local channel at 11:00 am. I am going to set my DVR to record it in case I am unable to watch it.
If you would like to find out when it will air in your area, here is a link to their website:
I had to look at the expanded menu to find that they were going to discuss B-1 for tremors. The first topic for this air date is "Possible Incontinence Cure" and hopefully this will help you find the correct episode to watch!
Art
• in reply to
Okay, so I did watch the "The Doctors" television show today to hear what they would say about Dr. Costantini's treatment of two people who have essential tremor with high dose B-1 injections.
The piece which lasted approximately 4 minutes, featured before and after video of the two patients and commentary from the three regular speakers after the short video played. The patients were treated with intramuscular injections. Dr. Costantini's name was not mentioned. They only referred to Italian researchers as discovering this benefit of B-1.
Obviously the three speakers could not endorse the treatment and given the strong reluctance of doctors to prescribe high dose B-1, it was basically just a description of the treatment and the results obtained by the two patients who were treated by Dr. Costantini. The three speakers talked a little bit about the potential benefit, but mainly they gave safety warnings regarding high dose anything. Dr. Costantini's contact information was not mentioned.
I think that about covers it.
Art
• in reply to
Here is a youtube video of the show from The Doctors that discussed Dr. C's use of high dose B-1 for essential tremor :
In the link I posted above, once you click on it, select "Watch On Tv" tab. When it opens, you'll see a drop down box on the left side of the screen. From the drop down list, select your state. Once you select your state, a list of cities the show will be televised in will appear. Look for your city and to the right of your city will be the air time and tv station the show will air on.
Unfortunately, during a recent scheduled surgical procedure, there were complications and Dr. Costantini had a stroke and is currently rehabilitating from that stroke at this time and will be unavailable until further notice from his HDT team.
As far as his HDT protocol which many members have found significant benefit with in terms of symptom improvements, you can use the following link that will answer most if not all of your questions about HDT and what it can potentially do for PWPs :
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
fighting fatigue & lack of energy with B1
Dosing Information On HDT / B1 / Thiamine HCL / HCI For New Members Considering HDT Including a Link To Some of Dr. Costantini's Info
Ups and downs with thiamin
