I have had thiamine tablets made up for me. They are thiamine hydrochloride 130mg. And I am advised that I should take Benfo Thiamine as well. The tablets I have also include 50mg lipoic acid.
Can anyone advise me about quantities I should take. And are there side effects? Should I start slowly? Also, Sunvox, why did you say you would not be taking thiamine?
I tried reading up Dr Costantini but it is all in Italian and I haven't made much sense of it all.
,
I have read where he will start with 2g, one X day. After he read my ("situation")thiamin dose was presently high and successful, I think that is why he instructed me:
11/19/2017 "
Dear Roy,
Sorry for my late, but unfortunately I can not speak English well, so it's Dr Erika Trevi who is writing these emails to you.
We don't use benfothiamine because previous trials report it does not enter in the neural cells, that's why it is not used for the diseases which don't affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate. For your situation 1 intramuscular injection twice a week (or an oral dose of 4 grams each day, two tablets in the morning and two at lunch time) should bring to the complete regression of the symptoms in 1 or 2 months. As an attached link, you'll find a paper with the possible thiamine side effects.
In another email, I'll send you all my published studies.
Best regards,
Antonio Costantini"
His reports suggest he has presented even higher doses. With a patient not showing sustained improvement, he cuts their dose in half.
Roy, I guess you will reach the 2 months thiamine treatment in a couple of weeks. Please let us know if you experience a complete regression of your symptom as Dr Costantini suggests.
I am still looking for improvement in tremors. I could not be happier with ALL the other areas of improvement. I will continue T-HLC the remainder of my life.
I always read your posts. Morning Edition NPR.org health section a very interesting treatise on How we mistreat our spines and primitive societies do much better (tabletop bend) and simple tips to more advanced weight lifting stance using hip and feet shoulder width apart even sqeezing gluteal muscles as we take each step to strengthen the spine. Back pain is so common with PD. Here we have a strategy to put to practice. Whatever gives us hope to improve.
Thank you Royprop. That gives me a better idea of what to do. Do you have to maintain that high dosage? Or can one go onto a maintenance dose?
Dr Costantini is making quite a sweeping claim. Does your or anyone's experience bear that out? Are your symptoms gone? I guess even if they are ameliorated one would not complain.
I am still looking for improvement in tremors. I could not be happier with ALL the other areas of improvement. I will continue T-HLC the remainder of my life.
Hello RoyProp,
"With a patient not showing sustained improvement, he cuts their dose in half."
Do Dr Costantini actually diminishes the thiamine dose when it does not work ?
Is it for preventing adverse effects ? Or is there an ideal dose like with mannitol ?
P.S. Will be entering my 5th week with thiamine ( 100 mg, IM, every third day) tomorrow
5th week? You should have major improvement to report.
Dose reduction? I suspect there is a translation issue.
It has been shown by others, a rare reaction to vit B. Same can be said about aspirin.
Yes RoyProp, I'm in my 26th day under thiamine. After the first week It was as if I was cured. Even bradytachia was like gone. An amazing feeling I kept for myself.
But sleepiness and procrastination came back. The point is, what part is due to PD, and what part is due to non-chemical, rampant, depression ? What part of who I am refuses to be better ?
By the way, did I thank you enough for that thiamine issue ?
I accept your thank you. Help me spread the good news far and wide.
Can you tell us what specific symptoms you have found diminished with the thiamine?
I can now: button shirt, cut my food with a knife, move faster, get in and out of bed, brush my teeth...normal bowel movement.
Good to know. I get that kind of improvement with the Mannitol. Now if I could win the war against the tremors ...I'm still fairly early in the journey yet and while they're not overtly obvious, they still drive me nuts.
Hi Xenos, I must have missed the memo: What is the ideal dose for mannitol? Thanks!
Hi Skydome, the ideal dose of mannitol depends on your weight. To find out, you can subscribe at CliniCrowd.com, answer the UPDRS-like questionnaire and the last page of it will give you all the details. It's completely free.
For example my weight is 70 kg and I was advised 10 g per day.
what is mannitol used for with PD?
You could read this :
clinicrowd.info/sweet-appro...
Thanks! Do you have a source you trust to purchase from? Is it in a capsule?
It's a very common product.
I buy it from HerbStoreUSA or BulkSupplements with or without Amazon.
My grocery store also sells it by 5 kg barrels.
You have to have a scale. I bought one at one tenth of a gram (mine is HH120D from OHAUS Corp, USA - It's made in China). I guess it's an overkill though and that a good kitchen scale would do the job.
Did the IM work better than oral ?
It didn't work for me, neither IM nor by mouth. I tried different doses - in contact with late Dr Costantini - but there was no result.
But we are all different from each other...
You could try Google Translate, it works great
deepL works even better !
Xenos, I was using Google translate and based on your recommendation I tried DeepL Translator today. All I can say is that you are right and thank you!!! What a difference! I recommend that anyone who is communicating with Dr. Costantini use this translator as it will help to keep things from getting lost or twisted in the translation!
Xenos, on an unrelated note, I was wondering if you could add a post about your thiamine experience to the "who is taking thiamine thread" at the following link:
healthunlocked.com/parkinso...
Thank you again for the translator!
Art
I tried Benfothiamine and it caused a rise in blood pressure, but at the same time it helped my leg stiffness. I switched to thiamine hcl. That has not changed my blood pressure. I think thiamine is part of a puzzle. Thiamine affects cellular energy. Mannitol cleans out toxic proteins. Niagen enables cellular repair. Thiamine is not a "one bullet" solution.
what is Niagen?
You can click on my avatar or my name and find many many links to research on Niagen. It is a new form of vitamin B3 that is unlike niacin the old form of B3 and has a significant amount of research in cell cultures and animal models that hint at it's benefit to people with neurological problems. It is better than niacin because it increases a good molecule (NAD+) in the body AND it boosts cellular processes that stop cells from dying. (it is a SIRTUIN activator and not a SIRTUIN inhibitor like niacin) and unlike niacin you can eat a bunch of it without any side effects, namely flushing.
Please let me know what helped. It's been 3 years since your post. My dad has pd
When to combine thiamin and prescription meds
Vitamin B1 : Thiamine vs. Benfotiamine 
B1 Thiamine 
