Parkinson's Movement
13,537 members12,071 posts

Adjusting to B1

Moved to 6g a day to see if that level would effect tremor. Became constipated after two weeks. Reduced dose to two g a day seeking the lowest level yet still effective. I see others on lower dose than 4g and some put on low dose by Doc C

60 Replies
oldestnewest

Please give us periodic follow ups. Good luck!

Reply

click on "+ Follow" on my profile

2 likes
Reply

Thank you Roy .He replied .I was using his secretary address so the address you gave me is the correct.

He said 3 g is the right dose at the moment.

Reply

I started the Thiamine, at the 4g per day level, for help with constipation. So far it has had no effect on my constipation. It has improved my life in other ways but not for that issue. Roy Prop are you sure the Thiamine affected your constipation or could it have been something else?

Reply

Could have been but the timing points to overuse of HCI.

Reply

After starting in the 4g level of thiamin HCL, within a very short time and for the following fifteen week my bowel movements were regular and smooth. BIG change from the previous years. Moved to 6g a day to see if that level would effect tremor. Became constipated after two weeks. Don't fool with something if it is working, unless; "...if the dosage is too high, it can determine, after an initial improvement, an aggravation of the first improved symptoms."

copy

Dap1948 4 hours ago 2 Replies

Because many of us follow what others are doing in respect of dosage, in this case B1, I thought I would post that Dr Constantini suggests a dosage for B1 based on condition, onset and weight of the individual. For me his advice was just 2 grams a day, 1 in the morning and 1 at lunchtime.

He also pointed out that if the dosage is too high, it can determine, after an initial improvement, an aggrivation of the first improved symptoms. Then he recommends no B1 for a week followed by B1 at a lower, possibly half dose.

I hope this information helps someone!

6 likes
Reply

I was prescribed amantadine for the only symptom i have so far which is tremor in right hand. Started it april 17 neuro said give it 4-8wks. So far no change at all. One woukd think to see some change by now dont you think ?

Reply

By the way sinemet didnot help.

Reply

i was given the amantadine to deal with rigidity!

Reply

Can you please inform me of what the HCL means? The only thiamine HCL I can find online is in powder form; the thiamine tablets do not say HCL. Dr. Constantini recommends 4g for my husband, I guess I would have to purchase a scale to measure 4g? Thank you for your help!

Reply

Hydrochloride - HCL.

Vitacost vitamin B1 (as thiamin HCL) 500mg, easy swallow capsules

Reply

Thank you very much for your prompt reply! I assume this is what you take?

Reply

Yes. 1g in morning / 1g in afternoon

Reply

Ok, thanks for answering quickly. My husband is going to try 2g in morning and 2g at lunchtime, per Dr. Constantini. I am excited to be full of hope for something that might help, but a little wary about taking such a large dose. Just waiting for Amazon to deliver.

Also, if you still have constipation problems, I fix my husband a medium size bowl of fresh fruit for breakfast sprinkled with about a tablespoon of freshly ground flax seed and a tablespoon of chia seeds, and now everything runs smoothly.

Reply

Does it have to have hcl?

1 like
Reply

Dr Costantini’s researches and protocol been based on the Thiamine HCI, both forms of injection or oral administration. His advice on B1 is Thiamine HCI as far as I am aware and been taking it for a year.

Reply

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 think I will return to 4 g daily.

Reply

I started in february at 4 gms. No benefit and tremor worsened over that time. I contacted Dr C and he said that for my weight and stage 4gms was too much, lowered to 2 gms. I'm now waiting a week with no thiamine hcl and then restarting after making a video of my symptoms, per the doc. Hopeful.

4 likes
Reply

Rebtar, can I ask you your weight?

Reply

Sure. I weigh 125. Dr. C says dose depends on weight and degree of symptoms.

Reply

what unit of weigh is 125.

Is this kg, stone or pound?

For instance, I weigh 73 kg

Reply

Sorry, it's pounds.

1 like
Reply

I weigh 58kg and Dr C put me on 2 grams

Reply

Did he mention the basic weight to dose formula...I also realize other factors are taken into consideration.

1 like
Reply

ultimaedizione.eu/costantin...

“In 2011 our team was working with dosages based on the body weight: 60 Kg corresponded to 600mg of vitamin B1, to be taken orally and yielding marvelous results: the elimination of exhaustion and all the symptoms that accompany it”.

Reply

Thanks ! I knew you had posted this a while back, and I've been searching for it. You saved me a lot of time.

Did I mention that I've been experimenting with b1 and other supplements, and found that taking a super b complex with b1 was causing lots of fatigue. I would literally crash an hour or so after waking. I 've been off the b complex for about 4 days and haven't experienced any crashes. Eventually I'll take fewer, and not every day.

2 likes
Reply

I am still taking (w/o experiencing fatigue) Life Extension Bio-Active Complete B-Complex, 60 Capsules. Ingredients include 100mg thiamin HCL, 100mg B-6, 400mcg Folate

1 like
Reply

Based on the 2011, does it mean if your weight is 75 kg , you should be taking 750mg

Reply

My opinion and observation, Doc Costantini is judging dose (in your case it may be 2g day) based on body size or build, not a direct conversion. He is also judging reaction to first dose, saying if symptoms do not improve in four months, or symptoms get worse attributed to the current dose and not normal progression of Parkinson's, halve dose.

Reply

"It’s doctor Costantini himself that chooses to maintain a balanced profile about his discovery and methods. He deliberately avoided initiating a promotional campaign. He chose not to patent his results because he refuses to ‘’speculate’’ on devastating illnesses such as these. He accepted scientific verification and sent his findings to specialized magazines and participated in conferences where he allowed colleagues and experts to examine his work."

GioCas writes:

“if anyone has doubts about Dr. Antonio Costantini, ask yourself what he is doing here among the most illustrious colleagues of the highest level (third from right to bottom in the group photo). I'll tell you: the speaker for the use of thiamine in practice, as he explained in one of his interviews.”

giga.uliege.be/cms/c_25744/...

2 likes
Reply

I'm very thankful for Dr. Costantini. I'm trying to figure out what I said that got me in trouble here :) !

1 like
Reply

Oh! Did you interpret my comment as trouble? Not.

1 like
Reply

Ha, yeah...thought I irked you and GloClas !

1 like
Reply

RoyProp, have you tried a maintenance dose of AerobicLife Mag-07 to treat/prevent constipation? I take 2-3 at bedtime each night. It has been crucial in maintaining regularity.

Re: B-1: All my symptoms worsened on 4 g per day. I am suspending treatment for one week (per Dr. C's recommendation) and then halve the dose.

Thank you for so willingly sharing with us.

Reply

So what does dr. C. Recommend for tremor

1 like
Reply

Hello Rosabella, why not write to the doctor giving him some information about your weight and your case to get a personalized answer? Many write to him here. I know him and I know he will be happy to do it. the email is this carapetata@libero.it.

Reply

Thx

Reply

I wrote using an Erika address and it’s been over 20 days . He never replied.

Reply

Roy, i wrote to Dr C and he didnt reply after 20 days, I wrote again and he still hasnt replied. What email address did you use? I become impatient and started the hcl thiamine today on the 3g. Is that wise?

Reply

Wise, yes. Everything can be discovered in a search on HU.

carapetata@libero.it

1 like
Reply

When I write I use Google translate to render it in Italian.

2 likes
Reply

Io aggiungerei la versione inglese ,... trattandosi di cure mediche non mi fiderei di google traslate che cerca sempre di vendere qualcosa. :-)

Reply

translation: "I would add the English version,... being medical care I wouldn't trust Google translates that always try to sell something"

1 like
Reply

no.... was confidential :-) :-) :-)

Reply

confidential ?

1 like
Reply

reserved? between us that we understand Italian? :-)

Hi Roy, you are the best friend of all PD patients, :-)

Reply

thanks to Google Translate

2 likes
Reply

thanks to Roy !

without you many would never have known

Reply

Whenever I write to Dr. Costantini, I do it in English and then above it, I use the google translated version to Italian. I do it this way for two reasons, one, google translate often loses something in the translation and I know this because I have written something in English, translated it to Italian and then translated the translation back to English only to see a different message than what I started with!

The second reason I do an English and Italian version is in case Dr. Costantini has an associate who speaks and writes English, which I believe he does, they can can correct any mistakes that google translate makes.

Art

2 likes
Reply

Yes, I do the same, and make revisions if the translation back to English does not match the original.

2 likes
Reply

Thank you. I was given a different address . Her secretary as I was told he doesnt read English and needs a translator. The weight is 75kg . So 3 g is not too much?

Reply

What does Hu stand for?

Reply
Reply

Dygnosed November roy;not on meds;exercising; supplements; is it worth trying b1 hcl ?

Reply

It will be only you and Parkinson's progression unless you start today, C/L and THCL.

Reply

Shud i start cl as well roy ?

Reply

That was what was recommended to me by my neurologist.

Reply

Do you think its a good idea to take cl;when i probably dont need it yet roy ?

Reply

He says it is to prevent falls

Reply

Hi, I e-mailed Dr. C and told him my symptoms and my weight and height and he told me to take 2grams /twice a day. After a week I was so constipated that I dropped it to 1 pill a day and it cleared up in a day. I get terribly hemorrhoids when I get constipated so I am am going to increase it slowly. Not sure it is helping but I imagine I have to take it a bit longer to see any improvements in my freezing episodes and my falling. Keep on keeping on fellow Parkies and remember to Smile!

Reply

You may also like...