Thiamine 60 day success!

[Don_oregon_duck]

Went shopping with my wife today. 60 days after starting and continuing with 4 g of Thiamine HCL daily. My wife gave in, and went to the car while I stayed shopping. Today is the first day since DX 3.9 years ago, that I had the strength, stamina and absence of pain to stay on my feet for over 4 hours, and out last my wife. 😀

[park_bear]

4 mg or 4g?

[Don_oregon_duck in reply to park_bear]

4g of Thiamine by taking , 500mg X 8 per day. I am glad there is somebody who keep me honest! Thanks park_bear.

[Hidden in reply to Don_oregon_duck]

I reduced to 2g a day with good results. I may now be constipated because of lower dose. I will give it more time

[cshamb in reply to Hidden]

Any known problems with taking that much long term?

thank you for all the help u r giving us.

[Hidden in reply to cshamb]

Thiamin HCL is water soluble and excess is peed out. So no problem.

[Xenos in reply to Hidden]

I'm thinking of reducing my intake at 1 injection (100 mg) per week instead of 2...

[Vegegardner in reply to Xenos]

How did two injections go at the beginning. Please keep me posted. Wish you well.

[Xenos in reply to Vegegardner]

Hi, I'm sorry to say, except during the first two days, it did nothing to me, neither bad nor good.

I also tried pills, under the late Dr C. supervison, with no effect.

We are all different, I guess.

[maryalice in reply to Don_oregon_duck]

Where do you purchase the thiamine? How often do you take it. Can you take it with mucana powder , amino acids, and medication? Thanks for your help.

[Mjm012649 in reply to Don_oregon_duck]

Don, which brand do you use and where do you purchase? Did you work up to that dose slowly, or did you start it right away? Has it affected your sleep ... in a good way? My hubby has insomnia.

[Hidden]

Don,

Your short term results with thiamine are very impressive and straight forward! If possible, would you mind copying it to this other thread about results that people are getting using thiamine?

healthunlocked.com/parkinso...

Thank you!

Art

[Benidorm66]

So good to hear! I have bought a bottle of 500mg capsules but it says on label, do not take more than stated dose which said one 500mg per day! I don’t know what to do??

[dadcor]

Great, keep shopping...every day in the next 20 years

[andrehypnotic]

Wow 😳

[cshamb]

DID U EXPERIENCE ANY SIDE EFFECTS WITH 4 GRAMS?

[Don_oregon_duck in reply to cshamb]

I did not experience any side effects. I am now 72 days since starting the Thiamine and I am having some back and leg weakness. I hope to find out the cause tomorrow as I go to the chiropractor.

What I am worried about now is, will we have a supply interruption because all of us on HUL start using up the supply?

[cshamb]

THANK YOU FOR YOUR REPLY. HOPE EVERYTHING GOES WELL AT THE CHIROPRACTOR. I NEVER THOUGHT ABOUT THE SUPPLY. I GOT MY FIRST BOTTLE FROM VITACOST.COM MAYBE WE COULD BUY SEVERAL BOTTLES. I DON'T KNOW WHAT THE SHELF LIFE IS.

[Don_oregon_duck in reply to cshamb]

I do not find an expiration date on the bottles . I am switching to Vita Cost capsules, which also happens to be on sale, buy 1 and get 50% off a second one.

[Vegegardner in reply to Don_oregon_duck]

Vita cost. ? Is it HCl ?

[chartist in reply to Vegegardner]

This is the correct one, but they are currently out of stock :

vitacost.com/vitacost-vitam...

Art

[Vegegardner in reply to chartist]

Thanks Art. I wonder if it's a lot more effective for my Dad to have an IM shot of B1 ? Asked two drs now but they say that this can't be given to treat a disease for which there is no scientific proof. I told them about many having success. Dr Constantini. Derek Lonsdale. EO nutrition.And I think the word he used was ... ANECTDOTAL. I'm not sure what that means. Better look it up.

If people have got relief of symptoms and there is no chance of harm. Then why not try . I have never given an IM injection and don't wish to give my dad one until I am shown how.

Three days on oral B1 HCl. Much improved. Better walk. And he just said this morning he had the best sleep.

1000mg for 2 days. Then 1500mg yesterday.

Prior to this he was just having 200-300mg to test the water.

EO nutrition I think talked about ALLITHIAMINE contraindications with ALA. Dad has R ALA. I look and see that they work together.

The net is a minefield.

Elliot (EO nutrition) says that for B1 to do it's thing. That glutathione levels and magnesium levels must be good and electrolytes important.

My dad is having Selenium and NAC.

Mag citrate liquid. And now some coconut water. And other activated Bs.

Has anyone had success with ALLITHIAMINE. At any dose. Or has anyone combined this with HIgh dose Thiamine HCL.?

Has anyone had IV B1 therapy?

The U tube on Glutathione IV by David PEARLMUTTER. Shows that patient walking well after a dose.

Amazing.

Anyone tried IV glutathione?

The common theme I have been told is that with PD. There is good days and bad days. And it's random with no reason. I don't think so. My dads sleep food hydration stress supplements all play a part in his balance and overall presentation.

Wishing you all the best. Art. Roy.

Park 🐻. And Marion and many others. I thank you all for sharing knowledge and experience.

This forum is priceless.

Kind regards.

[chartist in reply to Vegegardner]

Vegegardner,

That is a lot of information! Dr. Costantini's preferred method was the IM injections which he gave to most of his office patients unless they were opposed to injections in which case he gave them oral dosing of B1, but they seem to be tough to get in the US now.

Anecdotal in this case, just means that there are only patient reports of benefit from B1 for PwP, but no scientific studies to confirm such benefit.

Glutathione generally is low in PwP. There are multiple supplements that can raise glutathione levels, such as NAC, melatonin and AMLA to name just a few.

Mag citrate liquid will help for constipation, but it is not a well absorbed form of magnesium. Others such as magnesium glycinate, magnesium taurate, magnesium l threonate or magnesium chloride in oral form or topical spray form (mag oil spray for rapid relief of muscle cramps and pain relief) are better absorbed. Magnesium l threonate and magnesium taurate are also noted for crossing the blood brain barrier which is important for PwP. Magnesium has been shown to lower the cytokine, IL-8 which is important in helping to control inflammation in PwP because IL-8 is at elevated levels in the cerebrospinal fluid of PwP while being at decreased levels in in the serum of PwP.

Yes, I agree, some supplements seem to be advantageous for PwP.

Art

[Vegegardner in reply to chartist]

Thanks Art

[Vegegardner in reply to chartist]

Thankyou Chartist

[Don_oregon_duck]

I went to the chiropractor today and did not get an absolute answer. Now I am turning to you my friends. It has been 70 great days on thiamine, but the last 5 have been really hard. I went to the chiropractor last week because my back was starting to hurt really bad. Now I have serious low back pain, i feel like my neuropathy is growing up my legs and I am very unstable walking. Did I mention I have no energy?

So is it thiamine or a back issue? I am open for your thoughts.

[Vegegardner in reply to Don_oregon_duck]

Do you think the B1 caused your pain ? Is it gone now ? R U back on B1? My dads knee is sore. But he is moving more. Blessing to you

[chartist in reply to Vegegardner]

Don has not posted in a long time, so you may not get a reply.

Art

[Hidden]

Don,

My friend who was using 4 grams/day thiamine saw an increase in PD symptoms around two months into thiamine and Dr. Costantini lowered his dose to 3grams/day. This is one reason why it is useful to stay in touch with him while on his protocol. Your feed back to him helps determine any adjustments to your thiamine dose as well as your meds in order to optimize effects from all of those items. Documenting and a time line on your part, can be very helpful in your correspondence with Dr. Costantini! With the amount of PWPs he is now treating, his thiamine experience for PWPs, is probably unmatched in the whole world!

Art

[Don_oregon_duck in reply to Hidden]

I am not a patient of his. Will he answer my email? How does he charge his fees?

[Hidden in reply to Don_oregon_duck]

I have not as yet heard anyone who contacted him by email say that he wanted to charge them for consultations and he did not with my friend. I think his clinic keeps him financially sound , allowing him to do these email consults for free.....at least for now!

Art

[Don_oregon_duck]

Thanks, I will keep you posted on my progress.

[Vegegardner]

Thanks Don. My dad was sitting up last night At 9 pm. Bright as a button when normally face masking and tired. Is more better ? I'm nervous about this. But truly I am wittnesing benefits for my dad taking b1 HCl. Now 1500 mg day. Do people get more benefit from having on empty stomach ?

I read not to have with juice. So we don't have with Vit C water at same time.

Cheers to you all.

[chartist in reply to Vegegardner]

Vegegardener,

You may find this useful :

healthunlocked.com/parkinso...

Art