Do you know that it's just about 50 years that Led Zeppelin released this classic (Love, not B1!). That's a long time.....................but that's not why I'm posting.
I started on B1 couple of months ago, 4g daily. Not much changed then I had a week of blissfully few symptoms, then a week of pretty bad ones. I read that if there's a crash, one should discontinue the B1 then start with a lesser dose. Anyway, I wrote to Doc Constantini, introducing myself and giving him my vital stats (5' 11'' and 190 pounds). He kindly wrote back telling me that in his opinion, I was UNDER dosing and ought to be on 6g a day! This seems an excessive amount to me but I haven't the heart to write back and say 'you're joking, right?' Hence I thought that I'd take soundings from the community. Any thoughts welcomed. Thanks
Written by
jeeves19
To view profiles and participate in discussions please or .
Well I do not think, in your case some good reason you have it. I know the doctor and he knows well the patients with whom he has a lot of experience, as long as he can help you, he will do it. It is my opinion that only by communicating more with doc your right doubts will be clarified.
Initial success at 4g daily. Moved to 6g daily trying to reduce tremor. Did not affect tremor. Failure was in fine motor control and constipation return. Moved to 2g daily finding improved motor control but still constipated. I return to 4 g daily.
Possibly Dr Costantini, among other factors, calculated your dosage based on your weight which is approximately 86Kg. ! I suggest communicating your metrics in European metric system, which is meters (m) for height and kilograms (kg) for weight. It may be wise to write him back and discuss your concerns, especially the implications of such large dosage in the long term.
I WILL write to him Bass but I’m just slightly puzzled. I’m an average sized guy really. Presumed that many of the team here on 4g were of a similar build?
I do not have a chart, I just made an estimation using the weight ratio; 6g/day seems a lot for a 86kg guy but this is just my opinion and the dr. should know better.
weight is not the only factor. Also considered are UPDRS and how long you have been with PD. I just wrote to him for the first time, just now. Im at 4g since Feb1 and I have stalled after an initial improvement. Wondering about my own dose of 4g.
you know, it only took an hour or so for the Great Doctor to reply, not only once, but TWICE. I feel so honored to be touched by such greatness! Here is the coorrespondence, which I will also post as a separate topic soon:
Dear Dr Cosentini and company,
Hello from the United States! First, thank you for all that you do for people with Parkinsons Disease! I also have Parkinsons Disease and wish to consult you about the dose of Thiamine that I should be taking. I am 49 years old, 235 pounds (106.5 Kg). I was first diagnosed 5 years ago. My UPDRS score was 31 but came down to about 21 after 2 or 3 months of taking 4g per day of B1 Thiamine HCL. At that point I have stopped improving and I am wondering if I am at the correct dose. Will you please advise me on the dose for my situation?
Thank you and kindest regards,
Rob
Translated by Google:
Ciao dagli Stati Uniti! Prima di tutto, grazie per tutto ciò che fai per le persone con Parkinson! Ho anche il morbo di Parkinson e voglio consultarti sulla dose di tiamina che dovrei assumere. Ho 49 anni, 235 sterline (106,5 kg). Mi è stato diagnosticato per la prima volta 5 anni fa. Il mio punteggio UPDRS era 31, ma è sceso a circa 21 dopo 2 o 3 mesi di assunzione di 4 g al giorno di B1 Thiamine HCL. A quel punto ho smesso di migliorare e mi chiedo se sono alla dose corretta. Si prega di avvisare sulla dose per la mia situazione?
Grazie e distinti saluti,
Rob
------------------------------------
Caro Rob, debbo dire che la traduzione di google è perfetta. Anche io non saprei scrivere in inglese e il traduttore mi aiuta molto. Sono molto contento che hai trovatto giovavento dalla cura. In effett debbo dire che è stata efficace su tutti i pazienti trattati nel mio studio e via email. Quello che devi fare lo troverai in inglese tradotto da google.
Dear Rob, I must say that the google translation is perfect. Even I could not write in English and the translator helps me a lot. I am very happy that you have found youthful from the cure. In fact I must say that it was effective on all patients treated in my study and by email. What you need to do you will find it in English translated by google.
Please take a short videotape of your face while speaking and your walk to be kept as a reference for the future.
To determine the right dose in future we follow the following criteria. First of all it is necessary to say that if the dose of thiamine used is excessive it can determine, after an initial improvement, an aggravation of the first improved symptoms. In this case we invite the patient to suspend treatment with thiamine for a week, the worsening regresses and then can be restarted with halved or in any case lower doses. The right dose should not give the side effects of overdose, improve at least 50% all the symptoms of the UPDRS scale, and bring the PULL TEST to normal, which is almost always pathological, is often present even in the early stages of the disease and also reveals in the early phase the disturbances of equilibrium. As a rule, if a strong push towards the back is given to the Parkinsonian patient, he / she takes a few steps or falls. This symptom is only improved by thiamine being insensitive to other treatments. The normalization of the patient’s response tells us the dose of thiamine is the rigth one.
The normal subject to the push is still or at most takes a step backwards.
Let me know in 30 days, when you should see the improvements.
Best regards,
Antonio Costantini
--------------------------------------------
he then writes again:
Comunque potresti aumentare la dose a 5 grammi e anche a sei .Se è eccessiva invece di migliorare puoi peggiorare e ritornare alla dose precedente.La giusta dose di tiamina, assunta regolarrmente arresta completamente la progressione della malattia, riduce drasticamente i sintomi non motori,e corregge i disturbi dell' equilibrio.Riduce fortemente i sintomi motori ma non è in grado da sola di farli scomparire in quanto le cellule della sostanza nera sopravvissute, anche se sono ristorate non sono in grado di fare le funzioni di tutto il nucleo sano. Per ottenere la completa regressione dei sintomi motori è necessario aggiungere la giusta dose di levodopa la quale non darà mai più le cosiddette compliczioni tardive. Noi abbiamo da anni pazienti con le tue stesse caratteristiche che non mostrano più nessun sintomo motorio e da diversi anni. Tienimi informato. Un saluto. AC
However you could increase the dose to 5 grams and even to six. If it is excessive instead of improving you can worsen and return to the previous dose. The right dose of thiamine, taken steadily, completely stops the progression of the disease, drastically reduces non-motor symptoms, and it corrects the disturbances of the equilibrium. It strongly reduces the motor symptoms but it is not in itself able to make them disappear because the surviving cells of the black substance, even if they are refreshed, are not able to perform the functions of the whole healthy nucleus. To obtain the complete regression of the motor symptoms it is necessary to add the right dose of levodopa which will never give so-called late complications. We have for years been patient with your own characteristics that no longer show any motor symptoms and for several years. Keep me informed. A greeting. B.C
-----------------------------------------
in summary, he says to
1. take video of myself walking and talking
2. do a pull test
3. suspend treatment with thiamine for a week, the worsening regresses and then can be restarted with halved or in any case lower doses
4. you could increase the dose to 5 grams and even to six. If it is excessive instead of improving you can worsen and return to the previous dose.
-------------------------------------
I am extremely impressed!
~Bassofspades
Something that Dr. Costantini says is that the thiamine should be" taken before breakfast and before lunch on an empty stomach ". I imagine if you take it with food or on a full stomach, you may not get the full benefit.
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.
Need B1 Advice
Update on B1 dose increase after 4+ years
B1 Question ( nothing comes easy )
B1 Thiamine 
