Thiamine dosage @ 500mg

[Seashore60]

Does anyone have good progress with their symptoms on only a daily dose of 500 mg Thiamine B1 as per Dr. Costantini's protocol? And if so when is it taken?

[Hidden]

Forum member, pjokeefe is using only 500 mg per day and getting very good results as outlined here. Once you click on the link, do not move your mouse until the page has fully loaded and auto scrolls to the post location in that thread. If you move your mouse before it has auto scrolled to the post location it will stop the process and you will have to go back and click on the link again.

healthunlocked.com/parkinso...

Art

[jujulini in reply to Hidden]

yes,it takes a really long time to load. is it possible to stop new posts to that one, and start a page 2?

[Hidden in reply to jujulini]

Yes, it is taking a bit of time to load because there are 599 replies now.

MBAnderson is looking into the possibility of HU allowing a "read only" post that I could possibly add just actual result posts to help keep it manageable, but in the past when I tried to contact a moderator, I never got a reply, so I'm not holding my breath on that!

I could start a new post and transfer just result posts to it, but someone who does not know, will surely comment if they see something that interests them even if I say not to in the initial post because people don't always read the initial post.

Art

[Hidden]

I remember you posting before about your girlfriend and her quick initial response followed by symptom worsening within just a few days. Go to the thiamine FAQ page and look at question and answer number 50 here:

healthunlocked.com/parkinso...

Art

[Seashore60 in reply to Hidden]

Thank you Art, yeah you're right she did have an amazing first response with 1.5 g which BTW she had taken by mistake instead of the 2g that Dr. C had recommended. She then upped it to 2g as per protocol and experienced all her symptoms returning. This has somewhat occurred at 1g.

She is now on 500mg and is getting maybe 20% improvement with symptoms.

What I'm not too sure about re. Answer No. 50 is does worsening of symptoms mean worse than you were before starting the thiamine or about the same as you were before taking the thiamine?

Many Thanks

Eric

[Dingler in reply to Seashore60]

I started on 500mg B1 (in morning) a few weeks ago with a view to steadily increase dosage until I found my optimum.

After 2 weeks I was feeling some stability so increased to 1000mg (split morning and lunchtime) but after a few days I had severe pain my left knee (hardly able to walk). Cannot be sure it was down to B1 but stopped any way as it was the only change I had made in my meds/diet.

After a few days knee recovered and started on 500mg again.

After 2 weeks upped dosage to 1000mg (in morning) and have been on this dosage for 2 weeks until yesterday.

Have experienced severe rigidity in legs and back with extensive pain down my right side (my PD affected side) for the last week. The pain in my back was really bad and I was afraid to bend over in case I "locked up" so forced me to stop again.

Again I cannot be sure it was down to B1

I intend to give it a few days and then restart on 500mg again.

If I increase again I will use smaller increments (half 500mg tablet or 100mg tablets)

Conclusions :

500mg has some benefits for me

1000mg is probably too high for me

Somewhere in between these levels lies my optimum dosage (hopefully)

Of course I accept that any problems I have had could simply down to the vagaries of PD progression and nothing to do with B1

But my experiment will continue - what have I got to lose ?

Regards to All

[Seashore60 in reply to Dingler]

Hi Dingler, Thanks for your post, are you in contact with Dr. Costantini regarding your dose or are you just experimenting with it?

[Dingler in reply to Seashore60]

Just experimenting with it myself and using the helpful feedback on this site - working on the theory that my symptoms are mild (though troublesome and progressing) compared with some on here who are taking B1. 500mg/day seems to be the minimum (but I could be wrong in this) Diagnosed 3 years and on Madopar 125mg/3 times per day.Very little tremor.Main symptoms are stiffness in feet/legs and back.No other Meds/Supplements so I can be very sure of my sensitivity to and the effect of B1.

Best Regards

[Coot18 in reply to Dingler]

for knee pain better than pills is bicycle

[Hidden in reply to Seashore60]

Eric,

Regarding worsening of symptoms, in that particular situation, yes symptoms can temporarily worsen beyond where you started. 20% improvement is not enough, she may need some fine tuning. What she initially experienced sounds more like it, but no matter what, stay in touch with Dr. Costantini!

On the thiamine primer page which you can find by clicking on my icon, there is a link near the bottom of the post, not the bottom of the page, that shows the best price I was able to find for 100 mg capsules of B-1 and where to get it.

Art

[Gioc in reply to Hidden]

the human body is subject to things like this:

en.wikipedia.org/wiki/Refee...

I am not saying that it is the case of hight dose of thiamina, but only that some paradoxes are possible in the human body.

Being in touch with Dr. Costantini is the best thing to do.

Gio

[Seashore60 in reply to Gioc]

Hi Gio

Thank you and being in regular communication with Dr. Costantini must be the best way at least until a correct dose is found

Eric

[Seashore60 in reply to Hidden]

Art,

Fine tuning is a good description, will keep in touch with Dr. Costantini as he has asked which is amazing considering how busy he must be, and check out the 100mg tabs.

Many Thanks

Eric

[andrehypnotic]

I take 500mg daily one week on, one week off,with good results.

[Seashore60 in reply to andrehypnotic]

Hi,

That's interesting, are your symptoms or lack of them hopefully, consistent whether it's the week you are taking the 500mg or the week you are not?

Many Thanks

Eric

[Niggs]

I always, always get an initial short improvement followed by a worsening lasting several weeks before I know if that initial improvement will return or not with 'conventional' meds. If as it seems B1 acts in a disease-modifying way perhaps it should have the same rules applied to it as da's and ldopa, ie min 6 weeks to assess.

I'll let you know when I start the B1.

Just thinking out loud.

[Seashore60 in reply to Niggs]

Yeah please let us know when you start

Best Wishes

[alaynedellow]

Hi, I'm having trouble getting my dose right like you, have just stopped 500mg a day as symptoms are worse. I have freezing and trouble locking knees as I move off so I 'jig'. This was not a problem I had before B1, co-incidence, who knows but when it works I get the ability to swim back!!

I have thought of days on and days off I know Dr Constantini recommends a break once dose sorted. Awaiting to hear back from him at moment. I know it can work but I have struggled for a while now. Keep the faith his videos are inspiring.

Regards

[Hidden in reply to alaynedellow]

Yes, his videos are definitely inspiring and I think he is working on some updated ones, but not available just yet!

Art

[Seashore60 in reply to alaynedellow]

Hi, The videos are inspiring let's hope there'll be plenty more!

Regards

[Biensur]

Don't worry about the dose. It seems individualized. I was taking 500 mg. per day and became hyper, jittery.

Dr. Costantini advised me to take 50 mg. and will increase as per appropriate.

Interestingly even after taking doses that were not right for me I experienced promising effects such as reduction in tremor activity, energy and some return of previous lacking sense of smell!

[Seashore60 in reply to Biensur]

50mg that's a very small amount Biensur, but as you say it appears it can be a very individual dose that hits the spot

Best wishes

[Astra7]

I have started taking just 200 to 300 mg a day with a significant increase in energy. I am hesitant to take the big doses though as B vitamins need to be in balance with each other. I don’t really trust the science behind the mega doses though I can see it is benefiting some people hugely at least in the short term.

[Seashore60 in reply to Astra7]

Hi

It's understandable to be hesitant, glad you're having more energy with your doses. I suppose the tantalising question is would you be having even more success with an optimum dose whatever that might be?

Everyone is different and so is the severity of the PD that PWP endure making any decision on meds or supplements an entirely personal one.

Best Wishes

Eric

[Chaise]

Hi

I have started taking B1 in small amounts 100mg at a time......over the last day I have increased to 200mg in the morning before food & 100mg lunch time plus a Bcomplex x1 . My tremor in my left hand is still there but not so violent however I notide already I am not as stiff in my hand and able to type this reply quiet easly . Typing has been hard for me for last two years. I amusing my left hand more ( I am left handed) to carry things and to actually wash my hair more easily . My energy levels have been really good . So even on this low dose I am seeing some improvment. it will be interesting to see how i go on 500mg.

[Seashore60 in reply to Chaise]

Hi

Yes it will but I guess if you increase and increase all be it slowly you'll get to somewhere that's going to be too much. Having said that you should then know what could be your optimum dose

Good Luck

Regards

Eric

[Imdefeated]

Look for an osteopathic doctor OD. Someone who works in a holistic Clinic. They are more likely to work with you on B1 injections which are much more effective in the treatment of Parkinson's. I know this because my husband gets the injections. Communication between my husband, Doctor Constantini, and my husband's DO is key to successful dosing.