hello, I am like many a fan of Dr. Costantini's research work, and like many I managed to reach the sweet spot...
The list of my symptoms that I managed to correct is long...
But what I wanted to mention here is the distressing observation of those who define themselves as the heirs of Doctor Costantini but who spend their time arguing and criticizing each other...
A little history 👉
I am French, diagnosed at the end of 2021...
I started the high dose thiamine protocol by reading Dr. Costantini's blog, then browsing the forums including this one
Finally I joined Roy's Facebook group where I also met Daphné...
On February 17, 2022, I started the capsule-based protocol, but I quickly overdosed...
At that time I received two conflicting opinions from Roy and Daphné...
The first asked me to increase the thiamine, the second asked me to stop...
But both were wrong...
I've never talked about any of this on any forum...
Then Daphné created her group, I was one of the first to join her...
Everything was going well at the beginning, then little by little as I became an expert on her group, and answered many questions asked by the members of the group, I felt that I was bothering Daphne more and more who reproached me for answering for example in his place...
There's probably a reason for that, I'm much younger than her and more reactive...
I can write it here, I haven't often received thanks from Daphne
For example regarding the URL of the group page which was not secure enough and had to write like this 👉https and not http
I also pointed out to Daphne that the starting doses of thiamine mentioned in her book for oral doses and injections were too high...
Indeed, not everyone is Italian...
Once again I did not receive a thank you
One day an American member of his group attacked me...And I was not supported by Daphné...
I ended up leaving his group to create my own in French which helps the Latins in this protocol...
And I'm very happy
But if I could give one piece of advice to Daphné and Roy, it would be to stop arguing and criticizing each other and put the interests of the person affected by the illness above your arguments...
Sorry Daphne, but sometimes you're wrong too
lorenzo
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Lolo2022
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There’s a fact that has always been a problem in therapy with B1, and it has been from the very beginning for Dr. C as well, which is the non-responder or variable response to treatment with Vitamin B1.
Levodopa also has its non-responders, showing variable responses over time, and we see how much confusion and controversy this generates in this case as well.
So we have the issue of variable response that leads to a considerable number of arbitrary solutions: mega doses of B1, less B1, sublingual B1, sweet spot, B1 plus B-complex, B1 plus magnesium , and so on endlessly.
“It’s Parkinson’s, baby!” (semi-quote).
A neurodegenerative disease that responds variably to symptomatic treatment , i.e. based on the extent of damage to the brain’s dopaminergic circuit and who knows what other things.
What to do while waiting for a true cure that will work for everyone, which I believe will come soon, especially since many people benefit from the use of B1?
Art has already provided the answer very intelligently:
try a more compatible method for you and determine if you are a responder or not ; based on this, you will know what to do.
B1 is still the same B1 from 100 years ago and makes always the same thing; the information has been known in medical texts. AI could help everyone.
It’s pointless to argue about necessary arbitrary solutions.
Stage 2 HY in fair condition after 10 years from diagnosis.
In this world I see so many cancers, heart attacks, strokes that it seems like a miracle to be able to go out and harvest grapes or drive and go for a walk by the lake to take some nice pictures.
I think the real problem we have with this therapy is related to what Dr. Costantini wrote about it on his blog, because he said that only one person was not receptive to the treatment.
One last thing, HDT original by Dr C is 2/1 injection Inntramuscolar at week and it works pretty well for me.
In my opinion if one keep introducing arbitrary ones moving further and further away from this it will stop working well and will be lost like many other knowledge in the history of man.
Of course, I take breaks whenever I have symptoms of an overdose, which are few and well known, often listed in the side effects. In my case, I have difficulty falling asleep, restlessness, palpitations. In this case, I stop an injection or two and everything returns to normal in a couple of days. I have never changed the dose. I have always taken 2 or 1 injection of thiamine 100 mg per week for 9 years. I once asked Dr. Costantini if I could take 3 per week, but I am not encouraged, in fact when I tried on my own initiative I immediately experienced insomnia without any further benefit.
After all, it is written everywhere that thiamine is contained in food and is consumed from sugars, carbohydrates and alcohol.😁
Lolo ,It doesn't seem to me that you need help for your purposes, from what I see here.
And then life is still too beautiful for me to spend it finding a "sweet spot" that the doctor C didn't tell me to find and that I never even talked about with him.
He always told me to be careful of symptoms of overdose in case they appeared, he talked to me about breaks, but never to look for a so-called "sweet spot”.
Anyway, good research to everyone!
Never give up!
Keep fit and ready, because I'm sure, there will be a cure soon. It's time!
Greetings from Italy
Espresso of the Italian Pwps. Also approved by P ark_bear 😁😁😁
my great pride is to have succeeded in helping a man who suffered from multiple system atrophy in my group who was demoralized, and could almost no longer walk, and who now, thanks to a dose of one gram of thiamine per day, walks again without problem with more flexibility... no more depressive problems, no more constipation...
Found a new platform here for your settling personal scores? What's the point in letting us know that you're always right and it's the others who are always wrong ? (except Dr Constantini?) I suggest trying EFT for emotional freedom if you think you are not receiving enough thanks ...............
as usual you read badly... What you have to understand in my post is precisely that everyone is wrong, no one has the knowledge... We just have to stop criticizing each other and put the patient's interest above all disputes...
Which is not what the two people I talk about in my post do...
Now I do not regret having banned you from my group, you who have always been conflictual, and do not know how to moderate…
Because of you, several members have left my group, finding your moderation too severe
I am the most peaceful person on earth and certainly not conflictual at all...........And having banned me from your one and only B1 group (excellent decision !) and your hasty departure der wonderful Facebook group Mucuna pruriens are the only reaction you found appropriate to my attempt to open the eyes of the group members after you criticized JC Prevost, Daphne Bryan, John Coleman (widely respected Parkinson specialist) (calling him a swindler) and even Dr Maldonado (very famous Spanish neurologist) insinuating that he would have made incorrect prescriptions for you and belittling him as a little neurologist, saying you do not agree with what stands in his new book…… proudly signing all of this with Your friend in you B1 group pretending to be the saviour of your 480 members who are also blessed to have you at their side............. while you are in fact leading them astray..............
Isn't it time to come down to earth?
This will be my last answer here..............I am not interested in that kind of "gamineries" anymore...........
Gamineries from the same person who once told me I have more members than you in my group...
How can I say it?
Just yesterday a former member of your excellent group on nutrition nicknamed you Valerie hautaine , after having slammed the door of your group...
not everyone has the great privilege of having paid for a whattsApp consultation to a woman who claimed to be cured of Parkinson's...
a person who stole 50 euros from you because he is not even a doctor
I'm also sorry to tell you that I don't believe this Australian naturopath who recommends 100 mg of vitamin B6 per day when we know that excess vitamin B6 leads to peripheral neuropathy...
How can you lie to such an extent, by claiming that I called John a swindler ?
As for Daphne, the only criticism I have made of her is that she is in favor of not increasing the dose of b1 after one or two improvements, my case proves that this is not exact.
and if I remember correctly I believe I remember that you also criticized Jc Prevost
Now I left the group on Mucuna because my group takes up too much of my time as well as the creation of a website...
for your post on the mucuna pruriens group, at the risk of disappointing you I haven't read it...I deeply regret it because like everything you write, it must have been fascinating
now I am proud to help as best I can the members of my group including this famous Bernard who suffers from MSA and who can now walk...
unfortunately you could not read it...You were banned
Bonjour chez vous chère Valerie, dommage que le parkinson vous rende aigrie
otherwise do I have the right to give an opinion on Dr. Maldonado's prescription for me?
as usual you are very poorly informed, since I gave his contact details to Daphné for a consultation, jusna, jean mario, but also michèle and evelyne without counting that I was the first to congratulate him for his book..
no not at all but we are all the heirs of doctor Costantini, we all three have a facebook group..
my anecdote consisted of telling that during my first overdose of vitamin b1, I received two opposing opinions from those who claim to hold the truth JayPwP
hi Lorenzo, what dose of B1 would you recommend as a starting point including both oral and IM? I am 53 yrs old, 166cm tall and 53kg (Caucasian). Do you think superior source microlingual absorbs through the mouth by placing under the tongue. Thanks for your kind reply.
The Mediterranean is everyone's home, it has been said that if you give stones to the people of the Mediterranean, they will invariably build a house, faithful to the values associated with it, namely family and hospitality. On the Mediterranean you always feel at home.🤗
the problem is that I prefer to specify that in my group we express ourselves in French, Spanish, Italian, etc.
for those who speak English there are two groups: parkinson's b1 therapy and parkinson's thiamine hcl
when I left the first group, some English speakers (English, Australians, Americans) came to join me but in my group, we mainly speak French, even if some members speak English...
if you're already in a group you might as well stay there, it's up to you
I can see the point of a French speaking group or an Italian speaking group etc.. but not a Mediterranean group as there are many Mediterranean languages. So if you include all Mediterranean, why not English speakers also ?
because as I already wrote to you there are already two groups in English and as much as an English person is less comfortable in a group where we only speak French (mostly) the opposite is also true…
no the majority of members are French, there are many Spanish and Italians, some Portuguese and North Africans (Algerians and Moroccans) it is indeed a Mediterranean group 😉
Io posso capire il punto avendo scritto per anni qui su Hu in inglese con un traduttore che di frequente fanno un pessimo lavoro e devo fare la doppia traduzione per vedere gli errori (italiano -> inglese ->italiano). E come avrai notato i miei testi sono pieni di errori al limite del ridicolo.
Il problema in mia opinione non è leggere , ma scrivere in inglese e come vedi ci sono poche persone italiane che scrivono qualcosa qui su HUCP.
Aggiungi il tremore del PD al resto.
google traslaation:
I can see the point having written for years here on Hu in English with a translator who often does a terrible job and I have to do a double translation to see the mistakes (Italian -> English -> Italian). And as you may have noticed my texts are full of errors bordering on the ridiculous.
The problem in my opinion is not reading, but writing in English and as you can see there are few Italian people who write anything here on HUCP.
😂 your English is good. Better than my Italian. I understand the translation thing but the med covers so many languages that there's still going to be much translation. Still not to worry. I won't be joining any group anyway as I'm not currently trying B1.
I hope with all my heart that you try B1 therapy one day, I have improved absolutely all my symptoms, to the point that if you meet me in the street tomorrow, you will not know that I have Parkinson's
well Lorenzo, I see you are back to your old abusive self. It’s over a year since you left our very successful group where YOU gained a lot of b1 knowledge from our committed members. Then when you couldn’t get your own way with everything you jumped ship and became abusive. I’m not at all surprised you have been banned from other groups. Roy had his thoughts right or wrong. Daphne follows Dr C original guidelines with new updates and you started your own group. Why can’t you just let ALL Parkinson’s sufferers decide for themselves which path to follow. B1 therapy is challenging to get right but is life changing when you hit your sweet spot. So please stop the abuse and creating friction amongst the groups. Stick with YOUR group and stay out of the others PLEASE.
sorry to contradict you dear julie knowles you are wrong as usual...I learned absolutely nothing more in the groups I was in I learned everything about vitamin b1 thanks to doctor costantini's blog which I I often mentioned in the b1 therapy group, which actually seemed to bother you...So thank you for not saying wrong things
I also learned a lot on this forum...Thanks to members who tried vitamin B1 before the creation of the groups
obviously you don't know how to read because the friction you talk about concerns Roy and Daphne but does not concern me..,
there wasn't a day when in Daphné's group and Roy's group, both criticized each other, that is true... everyone knows it, it's no secret to anyone…I find that a shame so don't get the wrong target or subject
now you are very poorly informed, it was me who asked Daphné to ban me, she will confirm it to you, I have the messenger exchange at your disposal
the new recommendations for oral and intramuscular doses in her book are mine, She will confirm it to you too
I even have to admit that I learned more from the blog than from the book
I won’t waste any more of my time and energy on you other than to say It is over a year since there were any negative comments between the 2 groups you mention SO why are you trying to stir more trouble.
It's not true, these two don't like each other very much and everyone knows it...
because as I said in my publication that obviously you haven't read that I'm tired of people who criticize themselves... b1 therapy belongs to everyone, and no one has the truth
yes keep your energy Julie because I unfortunately know that vitamin B1 did not succeed in stopping your tremors
You are very fortunate to have found your optimal dose of B1 and I am glad you were able to! So many try and have such great difficulty in hitting that sometimes elusive target perfectly. It has to be a great feeling when you finally hit it on the mark. Some have given up before they are able to find it and that seems really sad in the long run. On the other hand, B1 has not worked for everyone, so being a responder is not guaranteed, but being a responder is very fortunate for those that respond.
these people who think they know everything about b1 therapy, who talk to you about oral and sublingual therapy and forget the original like intramuscular therapy…
poor Doctor Costantini you must be very sad about this spectacle where the Anglo-Saxons explain to you today that magnesium and the vitamin B complex are taken before starting therapy while you wrote on your blog that they should be taken three months after
my post has generated a lot of reactions and has become popular, yet I am only telling the truth while remaining factual, that is the most important thing...
Hi Lorenzo. It Is great that you are passionate about your ideals. Ultimately we are all here either looking for answers or contributing towards support for others. A stress less life is important to my perception and experience of living with PD. B1 seems to work for so many, some find positive effects quickly while some must persist for longer. Ultimately the source of the awareness to start the therapy bares little significance. There are now many sources of information on B1 and the more promotion the better. Having followed many PD forums since my Dx, I and I’m sure many pwp are looking for reassurance ,support, compassion and cutting edge information. There are many valuable contributor’s and we all need to interpret the available information to our own circumstances. We all need to walk our own PWP paths. Previous and current promoters of the use of b1 are onto something. You will be well aware of the gofundme page to fund a study into the b1 protocol. Let’s all hope that the study page can raise the funds so we all get a better understanding of b1 effects😃. Personally for me b1 is the highest priority on my strategy although I am a super low doser. I Spent over a year going through sublingual doses before having to go to oral to keep reducing my dose, now on circa 25mg twice a week. I can sense/taste it days after my tiny dose. I’m grateful to Daphne and to you as you have highlighted your inputs to her page/group. B1 seems to work for me at the moment, I hope that continues. One thing evident is that we all respond differently to b1 treatment. This interconnected world is now loaded with information to help us all. Good luck with your endeavours, we need passionate people to work towards this common goal 😃👍
All it would take is 5$ per pwp to complete the gofundme requirement. The problem is most pwp are retired seniors and really not able to spare the money, but there is a huge number of people who are still working. If they keep $10 aside per year, many such studies can be funded.
now we must not forget that it is very difficult to help a pwp behind a computer keyboard, especially if the person asking for help does not take the trouble to write down in a notebook every day how they feel
I concur with your sentiment on this. I now as good as daily log my progress and outcomes. There definitely can be subtle changes that are easily lost, overlooked or forgotten. In my initial haste to start b1 I consider it a mistake that I didn’t document change thoroughly enough. While every one needs a starting point, with all the information available there is a need to mesh it together with your own individual experiences to create tactics that work for you. 😃
Hello everyone, I inform you that I will write a publication here that will condense the main information to start the vitamin B1 protocol, but this will mainly concern intramuscular injections and oral therapy.
I invite you to read the excellent comments on the protocol thanks to many members who have given me a lot here 👉chartist & Gioc & Park_bear
For clearer communication and understanding you should put the link of the product otherwise it is difficult to understand what you are referring to and how much thiamine HCl it contains. I assure you that it is very easy to get confused about the doses contained.
Thank you so much I have ordered. I live in Australia and they ship international so hope it arrives safely and does not get caught up in customs. It’s so hard to know who is a legitimate company to buy from. I was going to purchase through Gosupps.com but when I googled reviews about them they were terrible. So thanks for providing a credible company.
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Interview of Daphne Bryan following the publication of her book: “Parkinson’s and the B1 therapy”.
B1 Testimony
High-Dose Thiamine Protocol IM Injections
