Parkinson's Movement
12,695 members11,284 posts

Thiamine experience

Hi everybody,i hope you doing well,i did contact Dr C's for my mom ,and she started thiamine as He said ,3 capsules of 500 mg ,which is 1500 mg p day,? Today is the fourth day with no changes in her previous madopar doses,but no improvement after taking thiamine ?the first day she has a severe headache,second day supportable headache all day,third she felt pain in stomach ,today she tired and tremble a lot.anyone here experienced the same symptoms with the thiamine treatment.

Any suggestion?

Thanks

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I was wondering if anyone has experienced any worsening of PD symptoms initially and if so when did your symptoms start to improve?

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Thanks for the relpy,4 days not long to judge thiamine ,i saw post about dr C's radio interview ,patients response to thiamine after 3 till 4 days,she always got PD symptoms trembling and fatigue ,just remarking today is too much no improvement with thiamin

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Did I miss any posts that said what is suggested to take B1.....all at once, once a day or break it up and take it two or three times a day equalling the total amount? Thanks.

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Yes, you did.

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Most people here are so helpful and nice.......... sorry to have wasted your time

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I Think a couple of people have seen improvement in a few days to a week, but that is not the norm. You should read his studies- they're probably easier to find through a google search than trying to locate them here - but I believe results were seen consistently after 8 weeks.

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I hope that,thank you so much

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Hi Bayane8753, You were asking about the length of time to see benefits from the high-dose thiamine. In the following report on three PD patients, Dr. Costantini found AFTER 15 DAYS remarkable improvements, including an average drop of 49% in their UPDRS (parts I-IV) scores. (Scroll down to "Outcome and follow-up"):

ncbi.nlm.nih.gov/pmc/articl...

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Hi dumpelkin ,i appreciate your help ,i will tell the update after 15 days, thanks

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Here is a link to all of his thiamine studies. You will have to scroll 2/3rds of the way down the page in order to find the links to his many studies on thiamine.

healthunlocked.com/parkinso...

There is a lot of information about his protocol in that whole post if you have time to read it.

Art

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I will now,thanks

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I already did ,and i texted you about Dr Constantini's email,i appreciate that,and really no word found to thank you enough and all members ,i read post about benefits of b1 and i waited for quick response lol,:) ,thanks again

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Bayane8753,

You said you texted me, I assume this means that you sent me a "chat" message, but I did not receive a chat message from you.

Art

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Check now and u can see the archive ,thanks

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I received with the dosages recommended for me a written with general instructions. Here it is written that care should only give beneficial effects. If the patient experiences worsening, he should suspend the treatment a few days and then resume at half doses

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Ok,she will do that,thanks

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No negatives experienced - taking 4 500mg two times a day for 1month

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Thanks for the reply .

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9g/day? That's a lot. I started 2 g/day and played with doses between 1g to 2g a day. For higher dose I feel better but the tremor does reduce but just a little. For lower dose I still feel ok but the tremor gets down a lot. So now I take 1g in the morning and sometimes take another 0.5-1g in the afternoon based of how I feel.

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Thanks for your time and information sharing ,hope you doing well,thanks and have a good one ,i will do the same as you did.

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ion, When Basih101 wrote "4 500mg," she clearly meant 4 X 500mg = 2g, not 4,500 mg !

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Yes right,it was my mistake ,i want to say is the fourth day ,she take 3 capsules each for 500 mg ,i meant 3× 500mg =1.5g,thanks to let me know ,so i edit my post ,thanks

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Have you let Dr C know about the things she is experiencing? He will advise you on how to proceed. If you translate your message into Italian using google translate you tend to get quicker replies as there is no need to translate. Just write in short simple sentence. Italian is a straight forward language so the translation is usually very good. He (or his colleges) seems happy to give advice when you first start so you can find the right dose. I have asked lots of questions. I would not give up too soon as finding the right dose is not straight forward and seems to be different for everyone depending on your circumstance. You want to give it plenty of time to work and ask for advice if you think the dose is wrong. For us he has started us on a low dose - decided by age, weight, length of disease, symptoms - as far as I can tell. He wants us to give him feedback in 30 days so it seems it may take that long for us to see results. This is the most hopeful treatment (other then the usual drugs) I have found so far. We are in the early days so I can't say it has worked for us yet but I am confident. I stress read : ) so I spent many late nights reading research etc after my husband was diagnosed. Although other things also seem to have benefits this is the one I am most hopeful about. As far as I can see from others posts (who understand a lot more than me) it will take time and some patience to get the dose right. Sorry for very long post! I don't want you to give up too soon!

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Dear Kellypeters ,

Thank you for taking the time to share all of that great information with me. Your support, encouragement and advice have been extremely helpful.

i never give up since my mom was diagnosed, always searching for updates ,the hope always exists ,the hope is the power .my mom still taking the same dose،it was my mistake

I was not patient, I wanted to see the result quickly, because I was happy when I found all comments positive about the thiamine

I will tell about the upcoming update

Thank you again ,its very kind of you

Sincerely

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She is lucky to have you and your support! I would love to hear how you go in the future. Kelly

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Thank you ,sure i will,warmest regards :)

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I don't know if this has been posted before, but here are some before and after videos of Dr Constantini's patients. It's amazing! ultimaedizione.eu/videos-pa...

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