B1 Thiamine

[lenimoo]

Does anyone have experience taking high doses of vit B1 as stated by Dr Constantini?

Thanks

[Hidden]

lenimoo,

Welcome to the forum! You will find a ton of information about vitamin B-1/ HDT and much more on this forum! There are many very knowledgeable posters here with decades of experience between them!

Regarding B-1 /HDT, there are tons of those posts also, but this link will take you to a page that discusses everything that we currently know about B-1 and its usage for PWPs.

healthunlocked.com/parkinso...

Good luck!

Art

[lenimoo in reply to Hidden]

Thank you x

[Hidden]

Diagnosed 2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Google search: Doctor Costantini Parkinson

Dr Antonio Costantini, [e-mail]

highdosethiamine.org/

Facebook group by the name: Parkinson's thiamine hcl.

facebook.com/groups/2322600... …

Parkinson's Relief, Questions and Answers

[Erniediaz1018]

Yes welcome. What they said 😁

[mannp]

Don’t wait. Start the Thiamine hcl protocol today. It will stop your progression and slow down you symptoms or even reverse some symptoms. Please remember it has to be Thiamine hcl. Other Thiamine does not work. It may take time to find your ideal dosage. Have patience during this time of trial and error. Continue any PD meds you are already taking. Do not stop them. You may be able to lower your dose of them eventually. Good luck.

Margie

[Millbrook in reply to mannp]

So thiamine mononitrate does not work?

[Millbrook in reply to Millbrook]

I was using Solgar 500 mg but now that the dose has reduced below 500 mg have bought the NOW brand which comes in 100 mg. I had another B complex that had 250 mg thiamine mononitrate and B6 250 mg and B12 1000mcg so I thought I could combine it and just add 1 tablet of 100 mg of B1

[mannp in reply to Millbrook]

Mononitrate doesn’t work. It has to be Thiamine hcl. HCL is the only Thiamine that works. I also take a b complex. Please make sure the NOW brand is HCL.

[mannp in reply to Millbrook]

Did 500mg prove to be too much?Were you having side effects or a return of symptoms? 100 mg is a very low dose. A very few people can benefit from this low amount. Remember this is High Dose Thiamine (HDT) that provides benefit for the majority of parkies.

[Hidden in reply to mannp]

mannp,

Just as a clarification on the term "high dose" as it would apply to thiamine HCI and HDT, even 100 mg is considered high dose as that 100 mg is 8,333% of the daily value, according to this product label :

Supplement Facts

Serving Size 1 Capsule

Amount Per Serving% Daily Value

Thiamin USP (vitamin B-1)

(as thiamin HCl)

100 mg8,333%

So even at less than 100mg , where at least one forum member has found benefit, it is still HDT.

The current known range of effectiveness for HDT is less than 100 mg to 6,000 mg as Dr. C has used that 6,000 mg / 6 gram dose in patients who have other forms of neurodegenerative disease besides PD to good effect.

Art

[mannp in reply to Hidden]

Thank you Art.

[Millbrook in reply to Hidden]

Thanks Art. So glad you are here to help

[Millbrook in reply to mannp]

At 1 g he was jerking and thrashing in bed having active dreams - he never did that before only slight jerking. He also felt even more fatigued than before. I suppose you would if you were running all night in your dream. After a break of 5 days started on 500 mg. In the 2 weeks of 500 mg had 3 slight jerking/ episodes. Stopped for 3 days reducing to 500 mg five days a week but within 3 days was having active sleep. So stopped for 4 nights and now just started again . As he was taking the B complex with the thiamine mononitrate 250 mg for years I wonder if can conclude if his optimal dose is between 250 mg and below 500 mg

[mannp in reply to Millbrook]

He may be one of the few that does use a much lower dose. Does he take any PD meds. If not it may be time to start them. Is the NOW hcl? Did he show any improvements at 500 mg? I’m glad you are sticking with it. It does sometimes take awhile to find that dose. You are doing a great job monitoring and documenting his reactions. Keep it up!! You will get there.

Margie

[Millbrook in reply to mannp]

Hi Marge. He is not on any medication as he has not been diagnosed and his symptoms are non motor symptoms-gastro problems followed by frequent toilet visits then loss of smell- a period of 16 years or more. I only managed to string the sequence together while on this forum. So I am essentially his doctor . 🤣 He is using the Vielight Gamma which reduced his night visits from 6-8 times to 3 a night. It is still working on his sense of smell. I started him on B1 in Feb after joining this forum. The B1 nipped the stiffness in the bud as he used to cough hard and choke on his saliva- he does not do that anymore on B1. I need to get the right dose so that he does not jerk in his sleep. His body would then be more relaxed and he would have better quality of sleep. I pray that B1 would revert and stop the progression. Thank you for your encouragement

[Millbrook in reply to Millbrook]

Yes the NOW brand is HCl

[Hidden in reply to Millbrook]

You and your husband could consider stopping the B-vitamin multi for a bit of time to try and get a clearer idea of the dosing effect of thiamine alone. The mononitrate form is fat soluble and can buildup in fat tissue, possibly coloring the overall dosage picture. Once you get the thiamine dose dialed in and steady, then you can try adding the B-vitamin multi back in while paying attention to any changes shortly after adding the multi back in to confirm or disprove that it is or isn't a problem. It may take a bit of time to eliminate any of the mononitrate form from his system.

Art

[Millbrook in reply to Hidden]

Thanks Art.

[Hidden in reply to Millbrook]

Btw, now that you know your husbands dose is likely under 500 mg, day, you have already narrowed the possible optimum dose to a very narrow field which will make it faster to find the correct one!

Art

[Millbrook in reply to Hidden]

Thanks Art. I m so glad I found this forum. It’s extremely difficult keeping it all inside and not knowing if what u are doing is right. I really appreciate the support here even though it can get discouraging and sad when you hear of others struggles. But we can learn and encourage each other to a better day

[Hidden in reply to Millbrook]

Millbrook,

Yes, that aspect of the forum can be difficult to deal with, but look at all of the positive stories on this forum of people who have found what works for them very well and often times because other members have told them about it or they just happen to pop in to the forum and read the right post at just the right time! That doesn't even take into consideration the people who never post at all, but do read the forum and are able to get benefit from all of the information that is available here. You never hear or see them since they don't post, but at 15,113 members, you know there is a huge amount of readers and lurkers and that doesn't even take into account the number of people who view this forum without joining!

Art

[Millbrook in reply to Hidden]

Wow! That is indeed an eye opener

Thanks again Art

[Parkinsonsjohnny in reply to Hidden]

Hi Art, i am new to this forum. My question Is do you need a doctor to prescribe and get you on the IV high dose thiamine therapy? Do you know hiw i can find such doctor in the U SA. We live in Texas

[chartist in reply to Parkinsonsjohnny]

I just replied to another post by you on this forum to another question. I'm not thinking you can still get IM dosing in the states any more. There was a couple of compounding pharmacies with one of them being on the west coast, but I am pretty sure they no longer offer that option, but you can dose orally instead, it just takes a much higher dose because of the poor bioavailability of oral thiamine HCL. There are a couple of higher bioavailability forms of B1, but there is little experience with those on this forum.

Art

[kaypeeoh]

Not sure whether it's 'high dose' but I take B1 100mg sublingual. Also take Rytary three times daily along with hypertension meds. I'm not convinced I have PD because I don't have 'off' periods. Even though the DAT scan shows imbalance between left and right sides of the substantia nigra.