Some of you may have noticed that I have removed all of Dr. Costantini's information that I had spent so much time trying to put together for the members to use. I would like to explain why I did this.
When Dr. Costantini was available to do his consults for the forum members, he would answer all of your questions and manage all other PD related questions as well as counsel you on the safer use of thiamine. What I soon realized is that without Dr. Costantini to monitor his patients, newer members were starting to rely on the experience of other members and this is not safe, period!
There are "so many things that can go wrong" in a situation like this that I feel you must put the safety of your health first. In order to do that safely, requires your doctor's involvement in "all of your treatment"! This includes vitamins and supplements. Many people think that how can vitamin B-1 be a threat to my health? The truth is nobody knows that answer at the doses being used for his protocol for any length of time beyond his 6 years of experience with his patients in Italy.
I am not denying or confirming the efficacy of his protocol as adjunctive treatment to standard PD medications, but what I am saying, is that the safety of your health is much more important and the only way to do that is by having your doctor supervise all that you are taking including vitamins and supplements! Some of you may disagree with me on this, but what I saw was happening is that people were starting to follow Dr. Costantini's words on the forum without any professional advice from their appropriate doctors, and this can not stand! Without your doctors supervision, you are basically shooting in the dark and this is just plain risky as hell!
Why take a risk like that with your health? As soon as people started asking on the forum for advice on dosing without a doctor's involvement, I realized that it was time to take all of Dr. Costantini's information down, as there would no longer be a doctor involved in his treatment protocol. What if someone were to have a reaction to the thiamine that has not yet been seen? Without your doctor's involvement, who will know how to treat any potential complications that may arise from that use, whereas, if you include your doctor in that protocol, then he will know exactly what to do in order to resolve the issue. Without doctor involvement, you are merely guessing at everything and that is just plain dangerous to your health and I will not be involved in that type of behavior!
The current studies are insufficient to confirm the safety or efficacy of thiamine as adjunctive treatment to standard PD meds and this again means you are flying blind and potentially endangering your health and I absolutely do not agree with that approach. If you are insistent in using thiamine, then you absolutely have to have your doctor supervise its use. If your doctor won't do it, find one that will! To do otherwise has great potential to make your health situation worse! A person with PD already knows it is a difficult disease with many symptoms and complications. Do you really want to risk adding to those boat load of symptoms that are PD? Well that is your choice, but I will not support such a plan of action that does not include your doctor's supervision, period!
Please do not ask me any questions regarding the use of HDT/thiamine or vitamin B-1 as my answer will always be the same, "no answer at all". I am not a doctor and as such can not tell you what to do nor can anyone else on this forum , but I can tell you that it would be quite reckless with your health to not include your doctor in what you are doing! I could probably give a fairly lengthy list of reasons or potential combination of reasons why taking thiamine could be a problem, but that is not the point of this post.
THE POINT OF THIS POST IS THAT YOUR DOCTOR BE INVOLVED IN ALL THAT YOU ARE TAKING AND THIS WILL PUT THE SAFETY OF YOUR HEALTH, SQUARELY IN THE HANDS OF YOUR DOCTOR, WHERE IT SHOULD BE!
I thank all of you for taking the time to read this and I hope I have made clear that there is a definite health safety issue here that needed to be addressed! This is the last time I will speak of thiamine and I hope this puts more pressure on the Michael J Fox Foundation to either fund or do the needed scientific research to either confirm or deny the efficacy and safety of thiamine as it relates to PD. Clearly there is great interest in thiamine as regards PD, but until the correct studies are done, why risk your health? At a bare minimum, you have to have your doctor's supervision if you are going to try it
I'm having a lot of trouble wrapping my head around your post.
This post doesn't feel consistent with your input hereto for.
I could not count all the times you shared tips, therapies, and remedies you discovered from years of being a deep dive researcher and do-it-your-selfer -- none of which were formulated in consultation with your doctor.
As you know, the vast majority of people on here report their doctor has little knowledge or interest in participating in their vitamin or supplement regimen, so if the advice is they should do nothing without their doctor's input, then all of the benefit that has been experienced by all the PWP who had been experimenting with alternative and complementary therapies would not have been realized.
From my profile, "There are many people who’ve been living with Parkinson’s for a long time who say they have slowed or stopped their progression or that they feel better now than before they were diagnosed. Some even say they have become symptom-free. Some of those people take prescription drugs and pursue alternative and complementary therapies, some follow a non-drug regimen only, but none follow a drug therapy only.
In other words, if your doctor is dismissive of supplements and you only do what they say, you have no possibility of slowing the progression. You would be turning responsibility over to someone who cannot improve your health and no one cares as much about your health as you do."
I totally understand your decision to not be a replacement for Dr. C. Totally, but where you say "former member," does that mean you are gone? If so, I am truly saddened and disappointed. I and so many others have learned so much from you.
It seems to me the heart and soul of this forum is more newly diagnosed people benefiting from those who have traveled before them. I stay away from recommending people take or not take pharmaceuticals, but I've no problem actively encouraging people seek alternative and complementary therapies which includes alterations to their diet of which supplements are part.
Now, I think I figured out what has happened. Big Pharma has been reading this forum, has landed black helicopters in your backyard, snuck into your house and tied you up, and 1 of their agents got on your computer posing as you.
Don't think so LAJ. He was passing info from Dr. C. and Dr. Colangeli. He also copied and pasted posts from PD patients who have/are benefitted on HDT. He never admitted he was a doctor.
I guess he felt that if someone did have a severe reaction or had died and had relied on his information it would be his fault and he may not have been able to live with himself. Even though he has helped many people. Also it seems it isn’t as effective for non Italians so he might have been losing faith in it being a cure for everyone.
One last consideration. Everyone on this forum is an adult and is responsible for their own decisions. When one person suggest to another that they take, say, prunes for constipation, the person making the suggestion doesn't become responsible if the other gets loose stools.
In actuality, you are not responsible for the consequences of someone trying B-1.
One thing that comes to mind when I think about these issues is that we live in a society that seems to laud perfectly healthy people for putting on wingsuits and jumping off the tops of mountains. Now that's what I would consider to be a rather unfavorable risk/benefit ratio. What are these people getting out of the experience? A thrill and perhaps the admiration of their peers. Is it worth the risk? I wouldn't do it, but it's not really my judgement that matters, it's their own.
I appreciate your thoughtfulness and concern for everyone here and I agree about having your doctors on board because there are so many things that can go wrong . I didn’t benefit from the B1 but was always excited to hear other PD peeps success and I hope Dr C is on the road to recovery. Please don’t leave this forum because I appreciate your knowledge and input. Take care. Karen
From reading this forum, my estimation, without exaggeration, is that 99% of doctors don't allow their patients to even talk to them about vitamins/supplements/nutrition/diet.
Marc, I agree with you as well . I am fortunate to have a great dr and listens to me and encourages me to try alternatives however was very careful on his answers about the B1. I see my dr this Tuesday and I have a few questions about other supplements and will ask again his thoughts and knowledge about the B1 thiamine protocol. See what he says ....😊. Karen
Roy, Again he was very conservative on his answers . He listened to what I had to say but feels there needs to be more research and studies on the protocol. I love my doc . Roy I was wondering is it an organization/ foundation like MJF foundation or can 1 doctor alone create a study and get funding for a protocol. I understand that Dr C did it all on his own with his team but my thoughts are if another doctor , say a partner if you will to Dt C could be able to continue with his protocol in his recovery ? Just trying to understand what it takes to have alternative protocols to be looked at . I know the B1 protocol isn’t for everyone but there has been so many exciting results for many that I don’t understand what’s the delay on at least giving it a look. I’m sure it’s about $$. Thanks for asking what my dr s response was. Karen
AND THEN IT IS WINTER You know. . . time has a way of moving quickly and catching you unaware of the passing years.
It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams. But, here it is... the winter of my life and it catches me by surprise...How did I get here so fast? Where did the years go and where did my youth go?
I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like. But, here it is...my friends are retired and getting grey...they move slower and I see an older person now. Some are in better and some worse shape than me...but, I see the great change....Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be.
Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit!
And so...now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!
But, at least I know, that though the winter has come, and I'm not sure how long it will last...this I know, that when it's over on this earth...it's NOT over. A new adventure will begin!
Yes, I have regrets. There are things I wish I hadn't done...things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime.
So, if you're not in your winter yet...let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don't put things off too long!
Life goes by quickly. So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life...so, live for today and say all the things that you want your loved ones to remember...and hope that they appreciate and love you for all the things that you have done for them in all the years past!
"Life" is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one.
LIVE IT WELL! ENJOY TODAY! DO SOMETHING FUN! BE HAPPY! HAVE A GREAT DAY!
REMEMBER:....
"It is health that is real wealth and not pieces of gold and silver.
"LIVE HAPPY IN THIS YEAR AND EVERY YEAR!
LASTLY, CONSIDER THE FOLLOWING:
TODAY IS THE OLDEST YOU'VE EVER BEEN, YET THE YOUNGEST YOU'LL EVER BE SO - ENJOY THIS DAY WHILE IT LASTS.
~Your kids are becoming you.......
~Going out is good.. Coming home is better!
~You forget names.... But it's OK because other people forgot they even knew you!!!
~You realize you're never going to be really good at anything
~The things you used to care to do, you no longer care to do, but you really do care that you don't care to do them anymore.
~You sleep better on a lounge chair with the TV blaring than in bed. It's called "pre-sleep".
~You miss the days when everything worked with just an "ON" and "OFF" switch..
~You tend to use more 4 letter words ... "what?"..."when?"... "what?" . ???
~Now that you can afford expensive jewelry, it's not safe to wear it anywhere.
~You notice everything they sell in stores is "sleeveless"?!!!
~What used to be freckles are now liver spots.
~Everybody whispers.
~You have 3 sizes of clothes in your closet.... 2 of which you will never wear.
~But Old is good in some things: Old Songs, Old movies, and best of all, OLD FRIENDS!!
Stay well, "OLD FRIEND!" Send this on to other "Old Friends!" and let them laugh in AGREEMENT!!!
It's Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived.
I LUV you dearly, have the utmost respect for you, and have appreciated your every post, so you can tell us, did you fall in the shower and hit your head?
Marc
Hi Art, if I am not mistaken, you don’t personally suffer from Parkinson’s, do you?
Because his new post shows his narrow minded activism in this forum. This shows that if this is indeed him, then he/she has been trolling us all this time.
With all respect this doesn’t sound like you. Everyone I think realizes they should check with their dr., it seems a shame that all the hours you’ve so generously invested in and accumulated so much material can no longer be accessed by anyone. Even to use to help explain B1 to their physician. I understand it would be overwhelming if people are expecting you to answer all questions regarding HDT and this shouldn’t fall on your shoulders. I feel like something happened and I hope we don’t lose you and your wonderful friendship. You’ve been a blessing on this forum! It’s a forum about sharing our experiences, thank you Art for helping us all! Don’t leave us. You have helped so many!!😊
Art, try to say things in a brief and concise manner. I am not able to read your long posts. I think here you want to say that we should ignore your previous advices on HDT, as you have realized that it can harm rather than benefit in the absence of doctors supervision. Please let me tell you that word "doctor " doesn't exist in the PWP dictionary. The disease is still mystery for everyone including the so called neurologists. In such circumstances, let every PWP try alternative remedies. Parkinson eats the body at a certain speed varying from person to person, therefore sitting like a duck and waiting for the disease to do the harm is not a wise thing. I think vitamins are less dangerous than C/L
I was shocked when Dr. Mischley recommended SINEMET to my husband ! I thought DOs don't prescribe pharmaceuticals. Anyway, she is trying to have her own diagnosis and don't blame her.
Deserves repeating “Please let me tell you that word "doctor " doesn't exist in the PWP dictionary. The disease is still mystery for everyone including the so called neurologists. In such circumstances, let every PWP try alternative remedies. Parkinson eats the body at a certain speed varying from person to person, therefore sitting like a duck and waiting for the disease to do the harm is not a wise thing. I think vitamins are less dangerous than C/L”
Art, I think your contribution here on HU will remain in history and not just for HDT, but for all your generous contributions that have enlightened us on the practical use of supplements. You are always ready to give us individual help, never hasty always kind and respectful towards even the most timid and small question.
This is HELP!
Pure, simple, great and noble HELP without any other purpose. I thank you for all the benefits I have by applying your advice, but more than that I thank you for your sincere ability to help with kindness and respect for the person.
HDT has grown around the world by word of mouth (even Chinese research is concerned, they asked about it) and will go its own way if it meets the requirements.
Despite reading in the newspapers every day of a new discovery, to date there is no solution to the PD.
I understand your reasons, which are still in the name of help.
The posts can be deleted, the fierce opponents smile, but this life of yours dedicated to helping us will never be able to be “de-lived” or forgotten and it will be there in the heart of all those you have helped.
Adverse reactions with thiamine are rare, but hypersensitivity reactions have occurred, mainly after parenteral doses. These reactions have ranged in severity from very mild to, very rarely, fatal anaphylactic shock ... The UK Committee on Safety of Medicines had received, between 1970 and July, 1988, 90 reports of adverse reactions associated with the use of an injection containing high doses of vitamins B and C. The most frequent reactions were anaphylaxis (41 cases, including 2 fatalities), dyspnea or bronchospasm (13 cases), and rash or flushing (22 cases); 78 of the reactions occurred during, or shortly after, intravenous injection and the other 12 after intramuscular injectdion. They recommended that parenteral treatment be used only when essential, and that, when given, facilities for treating anaphylaxis should be available. They also recommended that, when the intravenous route was used, the injection be given slowly (over 10 minutes). Various authors have noted that parenteral treatment is essential for the prophylaxis and treatment of Wernicke's encephalopathy. However, further reports of anaphylaxis to parenteral thiamine have since been described, including one with a fatal outcome.
These were side effects I found as first hit on a quick google search this morning in bed. They are not a definitive list of all side effects and interactions. The chances are high dosage thiamine has only been used in situations where side effects would be monitored and reported in the injection form
I can think of at least one former nurse using thiamine injections without a doctors prescription, and there have been several posts about where to obtain injections out of state.
As others have noted, there is no information about long term effects on health
Injectable thiamine is only available in the US with a doctor's prescription. Not all pharmacies carry or compound it so it is sourced in different states.
So my husband has had PD for 6 years. After reading several comments on here regarding it’s benefits, we first consulted our doctor to see if he had any thoughts on it. He basically stated we could try it if we wanted and that it wouldn’t hurt him. That any excess he would just pass out in urine. So we gave it a try and only started at 100 mg. After a week or so, my husband had the flushing and rash on his arms. I went on here to see if anyone had experienced that. I had a few replies and some thought maybe the fillers in the B1 had something to do with it. We stopped it for a couple weeks and then tried another brand. It only took a week and it happened again! So, of course we are stopping it, but just saying... consulting our doctor did nothing!! His professional option was go ahead take it, won’t hurt you! Well flushing and a rash is something!! We see him again this week. Can’t wait to enlighten him. By the way, this is pill form!
It is not about lists of problems but about the unknown. Without proper research looking at all aspects of HDT therapy there can be no complete knowledge of its effects.
This does seem a puzzling response. This is a forum, a place where members share experiences and advice, and I would not expect to have legal liability for any comments made. It's different for a large organisation like MJFF, who could be seen as giving advice, and in this litigious world, rightly add "consult your physician" to everything. I am in the middle of helping my son deal with absurdly aggressive threatened legal action from his former employer. I have dealt professionally in the past with legal action that seemed absurd, and proved to be so when we went to court. It is unfortunately accepted practice for solicitors to attempt to intimidate. If someone has suggested that by coordinating a library, this represents formal advice for which you might have liability, first I doubt that is true, and 2nd just copy MJFF and have "consult your physician before changing any aspect of your therapy" pre-printed on your posts. But don't let people bully you out of participating honestly and enthusiastically on a forum. That said, to do my own bit of arse covering, I am not a solicitor,I do not know all the circumstances surrounding your post, and you should not rely on my comments as a substitute for legal advice.
The reason I had to change ID's is simple, in order to delete the posts required the old account to be closed. That is how this forum is set up. In order to explain, I had to open a new account.
Art, hope you'll stay on the forum under the new name and continue helping us here with your vast knowledge and great advice. If you are concerned about legal issues, Winnie has great suggestion to add "consult your physician" to every post. Thank you so much for your effort and dedication to this forum which has been a ray of light to many PWP's in their darkest moments.
Please keep in touch. Thank you for your kindness, compassion and encouragement. You helped us with instant information and websites so that we could make our own decisions. God bless.
Aren't we feeling uppity. What hubris. Who made you judge to decide what people should do and whether or not they should choose to self medicate without a doctors advice? It's their business not yours. Your decision to collect Dr Constantini's info for the group is commendable; however you should have stipulated up front that you would only do so under certain conditions; namely that they would heed your advice and not act to the contrary. We all know how that would have panned out. Your actions are less than commendable. Aside from your actions emanating from hubris they are petty.
The perception that there is great interest in B1 is not a sufficient reason to do a clinical study. I wouldn't hold your breath on that. There must be a sound scientific basis to justify clinical studies I.e. what does B1 do for PD and what is the underlying mechanism for what it does?
Art has explained himself well and has the right to remove the information. He has taken away nobody’s ability to take B1 if they so desire. His opinion on the efficacy of B1 is not important.
Interestingly, nobody on the forum seems to have had any concern over the effect of using Dr Costantini as an extra doctor. I hope that all this pressure on him to answer queries, look at videos etc on top of his care for his own patients and his research work has not contributed to his health problems.
I addressed my question to Art, not you. I took my husband to Italy from New Zealand for an appointment with Dr Costantini and we paid for it. I have not bombarded him with videos or questions. I contacted him once since the appointment. Members of this forum including Art have been my reassurance in darker moments, not Dr Costantini. It is my prerogative if I wish to ask Art a question. If he chooses to answer, that is his. I do not need your criticism or comments. Dr Costantini was incredibly enthusiastic and most obviously he was enjoying his work when we visited him. Best not you decide the reasons why he became ill, or how anyone becomes ill for that matter, you might be right off target. Of course we are all praying Dr Costantini recovers and not for our own greedy needs either.
Nellie, things seem simple. Art left for his personal reasons he wrote. This is all he wants us to know and I respect him. Are there any other personal reasons? Maybe yes, maybe not, if he doesn't let us know, I respect his privacy and I won't ask him anything else. I just thank him for the help he gave. Keeping HU alive , interesting and useful is everyone's responsibility, certainly Art and others like him make the difference.
This is a forum and it is for anyone to reply. I only mentioned Dr Costantini’s health because dealing with a lot of people on top of research and existing patient load, however happy the clinician is to do all of that, could very well lead to overload. I don’t think there is anything in that that would come as a surprise to anyone
This is a forum. Anyone can comment!!
As to Dr Costantini’s illness even his assistant said that his desire to help as many people caused him to neglect his own health.
if I say I agree it is because I agree, I knew him personally he visited me 5/6 times. He loves his work and loves helping his patients, he would do it day and night just to see them improve and not he never complained to me that he was almost completely ignored. His answer has always been to visit visit, he could write a book or something similar. No he always did what he could do best: take care of his patients.
Art has left the forum for no obvious reasons, and likewise so many people will come and go. I request to close the topic now and concentrate on something useful. I will never ask Art to join us again as he has left on his own NOT because of someone negative comments. However if joins again at his own will , we will welcome him. Every PWP has to sail his own boat.
This can be answered by an experienced doctor. But how long should a long term be? I just want to remind you that in 100 years Thiamine has been used for beriberi, problems with alcoholism and other syndromes and research .In my humble opinion more studied than other drugs now in use and prescribed for PD with regard to long-term effects. For those to short it are well known and written on the buggy for this it is good to be followed by a doctor, especially if you are a beginner, because he has the practical knowledge on the use and on the undesired effects that however rare as allergies can happen and require ready solutions that a doctor can give. on the other hand, medical prescriptions are always required in almost all countries for injections.
Again you miss the point. It is about personal long-term use and not general use for 100 years. Even Dr Costantini knows that further research is needed.
That there is no long-term research on thiamine didn't factor into my decision to shoot up twice a week because, except for vitamin C, there is a dearth of long-term data on all vitamins (since there is no profit in it.) If some small percent of the PWP cohort end up with ill effects of thiamine after 10 years, I hope I'm 1 of them. 10 years? I'll take it.
That is certainly your choice to make and is the choice of many of the posters on this forum in HU. If a vitamin or supplement has a positive effect for you and you are happy to take it then that is your decision. If it causes you problems further down the line, then so be it. You have made an informed choice on the information available.
He isn't saying thiamine doesn't work, he is saying that your doctor needs to be aware of what you are doing, as there may be a small percentage of those who may have an allergic reaction to B1. It is the responsible thing to do. New members, check with your doctors and proceed with caution. For my husband, B1 was a godsend, but we did get the approval of our neurologist first.
How do we know that you are not just a troll who is impersonating the forum member called Easilly? You had no credibility. You would have been taken more seriously if you had posted this sudden epiphany in your so called original forum account.
I've been trying to look back through older posts from Art and find many replies from a username "Hidden" with Art's name at the bottom. I've never seen that before and don't believe he was using that username. Maybe there's something fishy going on here??
MBAnderson - I dont think thats a user name. I think it means “hidden” as in “not showing”. It is weird tho that he wouldnt post the final post under ”easilly”. Unless the post was an afterthought after the account was deleted???
Art has deleted his easilly profile so all his threads that he initiated will be gone. However threads in which he has contributed remain with his contribution but as he has effectively resigned as easilly they do not have an avatar. They are labelled hidden (guess it sounds better than resigned or left). He then had to create a new profile to post his farewell message.
At least this is what I have worked out over the years.
Personally I feel there is some reason behind why he has done this but have no idea what that could be.
One hypothesis is that a person or organization that Art respects (like Dr Marco C or, less likely, MJFF) has suggested to Art that:
(1) There is some risk to getting a trial funded if, during the course of application, there is a growing body of evidence suggesting negative or no results, or, worse, an adverse reaction. Especially if these negative results were acquired under uncontrolled and unmonitored testing, they would not mean that HDT doesn’t work but they would create questions that would have to be addressed by the study — making the trial design bigger and bigger
(2) In the absence of Dr C, the user community was imposing upon Art to help determine dosages. There are real risks with assessing and identifying the dose. Again, any negative/ adverse results would reflect badly on the whole mission.
The language Art placed in quotes may have come from his “advisor”.
Life is one long series of balancing trade-offs in virtually every decision we make. Cost versus benefit, risk versus reward. These are very personal decisions and our risk tolerance varies a great deal. I don't mean to sound negative, but having PD is the sh*ts and so to me, the risks have to be severe AND have to come with bad odds. To me, the risk of harm from thiamine (and I've read it all) is insignificant. The only thing I know of more harmless is water.
PS. I totally support Art's decision to step out of that role. He's done his fair share a hundred times over and everything that can be said about thiamine, he has already said -- so people need to take the time to go back and read old posts instead of asking him what they should do, IMHO.
He sure has. He worked hard for us. And I trust that his message comes from an objective place. I don’t know what the f$$k people who are criticizing him are thinking. Calling him “ uppity” when he’s not even a PWP. He curated content that helped make MJFF consider this as therapy (as evidenced by their blog post, which was mostly positive). He helped created this global movement to complement Dr. Costantini’s discoveries.
This is what happens when a user deletes their profile. There is nothing strange about it. It comes up regularly in old posts with users' names showing as "hidden."
I wasn’t addressing whether or not Art wrote it. I was simply explaining that avatars changing to “hidden” is the norm when someone deletes their account.
This is a bad decision. You make yourself a judge and jury of all recommendations Made on this formn. What qualifies you to make These decisions.? You acknowledge that you’re not a doctor And even if you were information contained here in this forumn Is so varied and Can envilve such complexity That no doctor could effectively advise. We are all big boys and girls here and realize clearly that it is reader beware This is the very nature of forum
Perhaps you could record and publish data on the forum. Why does it have to be someone else? Art has only removed his own collected data. He has the right to do that.
It’s not cool to fight amongst ourselves. But ??!!$$. Art curated content for the betterment of our community. He created a movement. He got it on MJFF blog. He encouraged us, educated us. I bet you know about HDT because of him. People wanted him to be the doctor when there was no doctor. Unfair. If you are curious, you’d find that none of the content has disappeared.
I was talking about long-term individual use. Dr Costantini wants to do more research. Why would he want to do it if it was not necessary?
You say if you already know the answer. What are the objectives of a future research I don't know, but if you are more informed you can perhaps enlighten me too. To my knowledge, research has very specific objectives.
Dr Costantini knows what the objectives of future research would be and he is leading research in this area with his team. He and his team know that further research is needed and I am sure they have specific objectives. The final part of Dr Costantini's research paper of 2016:
"Our report represents an important contribution to PD therapy, although further experience is necessary to exclude the placebo effect and to confirm the present observation, with clinical, cellular, and molecular data. The aim of the future studies will be to investigate the clinical, restorative, and neuroprotective effects of the long-term treatment with thiamine in PD."
thanks for the clarification, I am always happy when communicating precise facts that do not give rise to interpretations or misunderstandings on the part of the reader at any level of preparation.
As I will? ok, I note that the priority of Dr. Costantini has always been to confirm the benefits for the patient as per his words and not to discover "unknown effects in the long term".
Although may be a tertiary objective for a risk / benefit assessment.
How long is the long term for you? 2, 5, 6 years? This requirement that you require for Thiamine has also been requested for drugs still in use, such as LDopa? and have passed it?
You probably have a slowly advancing PD because I see that time is not a priority for you or you feel safe. For me and many other Pwps, time is the problem too. When I see that a search will last 7/10 years I already know that maybe it's not for me.
Facilitate link on levodopa and its side effects in comparison with Thiamine, someone similar:
Like all medicines, Sinemet can cause side effects, although not everybody gets them.
Stop taking Sinemet and see your doctor straight away, if you notice any of the following side effects:
allergic reaction, the signs may include hives (nettle rash), itching, rash, swelling of your face, lips, tongue or throat. This may cause difficulty in breathing or swallowing
chest pain
uneven (irregular) heart beat or palpitations
dizziness on standing-up quickly
bleeding from your gut which may be seen as blood in your faeces or darkened faeces (gastro-intestinal bleeding)
blood problems, the signs may include pale skin (pallor), tiredness, fever, sore throat or mild bruising and prolonged bleeding after injury
stiff muscles, high fever
mental changes including delusions, hallucinations and depression
I posted what Dr Costantini wrote in his 2016 research paper. He is not even sure what is the effect of thiamine and what is placebo!!
As to levodopa, most people I know, myself included, have no side effects or no serious side effects from taking it.
My PD has been static since diagnosis. In recognition of that I am a Research Ambassador for the National Institute for Health Research and get involved as a research subject at as a lay researcher and co-applicant for various studies in different fields.
Thiamine is not a PD cure but it relieves some symptoms for some people and that is good. Further research as indicated by Dr Costantini will only help.
Excuse me, without useless controversy, I could ask you for your opinion on the importance of discovering a biomarker to measure the progress of the PD precisely. IMO this is a precondition for the success of a PD research.
As in research into many conditions, a lot of work is being put into biomarkers. We have identified a number of genetic mutations - I have one of them - that are common in people with PD. The work with 23 & Me has helped.
Most people I know on levodopa have fairly serious side effects. That includes my mother, my uncle and myself along with numerous people I know IRL and numerous people on this forum. You are lucky and those you know do not have any, but implying those that do are a small minority is wrong.
How many people in the world do you think have PD? How many of them happily take levodopa with no side effects other than symptoms of their PD that have progressed beyond the ability of levodopa to treat? What serious side effects do the people you know have?
Dystonia, dyskinesia, vomiting, sweat-through-your-clothes hot flashes, to name a few. This is off topic though. When I have some more time I will put up a post.
Art, I am truly sorry this has all happened . I respect your decision for whatever reason has caused you concern and to delete your posts. And I am also sorry at some of the negativity being said and finger pointing. I appreciate everyone’s opinions and in put on all topics whether you are a PWP , a spouse , child of PWP , caregiver ect. Take care everyone. Karen
Art, thank you for all you have done and tried to do for us forum users. We shall carry on. The notion that your departure diminishes the value or credibility of HU is absurd. I wish you success and happiness in all things. Best - John G (reedboat2)
Art, you encouraged us to contact MJFF and express our IMPROVEMENTS on HDT protocol. I never did as I didn't want to be flooded by their emails and "DONATE." What about the people on this forum who contacted MJFF and encouraged the trial?
Have you ever thought that your whole reaction to Art’s action has made you the irritating one. You take up the work ghat he did. Do something positive and stop whining about Art.
I agree with you. As a PWP, who is participating in a Michael J. Fox Foundation research study, I have sent a letter, to the Fox Foundation, asking them to do research studies, on Thiamine, as regards PD. Hopefully, the Fox Foundation will do research into Vitamin B-1 / Thiamine supplementation.
I reported that my MD had said that large doses of Vitamin B1 would not cause me any harm. The body easily voids any excess. The MD suggested augmenting the B1 by taking multy- vitamins also and that as typical to PD everyone may not benefit.
Of all the unqualified advise that people here have given (such as telling people to stop taking prescribed medicine and just exercise instead) recommending to take vitamins is probably the least dangerous. Can any one name a single vitamin that by excess consumption causes problems ? Who would sue him and on what grounds.
But the fact that he did not have PD and that he did not explain his involvement in PD or his interest in promoting left me wondering.
We loose when anyone , who often contributes to the forum leaves us, no matter what his convictions. A forum where everyone agreed would be boring in deed. Art if you read this, pick a better name ,come back and we will find something to argue about.
Also, with reference to your not so thinly veiled comment about John Pepper's walking protocol, I don't know what is wrong with a little exercise. If that means you end up taking less medication or no medication, then so be it.
Actually according to Dr. Okun at the University of Florida/Parkinsons.org, there's no such thing as a Sinemet ceiling. The one limiting factor is the side effects that one might encounter with any dosage.
I think the research into the variety aspects of Parkinson's is still evolving. Most doctors will tell you that more is bad. I guess nobody really knows.
I think most people on this forum are looking to avoid the side effects which is more terrible than the disease.
Hi, Despe. Just a quick tip which you might find useful. If you make a comment and then want to edit it, just click the little v symbol by the word, "More", then click "Edit", then make your changes, then click "Save" and your initial comment will be successfully edited. 😊
When Art first joined he explained that he had some friends with PD who he was looking to help. He is an excellent researcher who showed tremendous empathy and compassion.
Thank you Art for your replies to my questions that gave me strength to keep going. No one has all the answers but you gave it your best. Take care of yourself and I agree to keep safety first.
Not a very encouraging for Dr. Costantini move. The Man is just a couple of month away and we're already flushing all his documented achievements, switching back to old good traditional medicine & doctors who can only advise that your disease is incurable and that you will feel only worse with time, and of course to MJFF with their "researchers" who for all these years discovered nothing but nice green DONATE button.
Costantini gave us life and believe not asking anything in return! Appreciate it.
Thank you Art for all your encouragement, sweet understanding and compassion when we felt lost. Everyone wants alternatives to medication especially if they are effective. Didn’t one neuro person say try to stay off meds as long as possible? And Jim Is proof that B1 works and he is not on meds. So sad to see you leave HU but respect your decision. Hope all is well with you and hope to see you back soon.
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