Parkinson and vit. B1

[Camomi]

My husband has Parkinson. I am new here. Does anyone uses vit B1 supplement? I found dr Constantini on internet, I gave it my husband for 6 months now, but nothing positive till now.

[albachiara2]

highdosethiamine.org/

[Sandmanliz]

There is so much from this group on b1. Scroll down. And type vitamin b1 in the search. Find a good reading chair….

[Gcf51]

As for me the biggest improvements have been from High Dose Thiamine (B1) and exercise. I recommend Dap1948 ’s book and her Facebook Group.

amazon.com/gp/product/B09TZ...

facebook.com/groups/parkins...

[gwendolinej]

Yes, join the B1 Facebook group-and get the book.

[Camomi in reply to gwendolinej]

Thank you, I have the book. But in a half year using B1 we do not see any improvement. In fact, I see more Parkinson in him.In the book I read that everybody has good result. But perhaps I have to be more patiënt.....

[gwendolinej in reply to Camomi]

Shouldn’t you be increasing the dose after all this time? It varies so much from one person to another.

[Camomi in reply to gwendolinej]

Yes I did. My husband is now on 1500 mg a day. We started with 300 mg.It can be to slow, but it can also be to much. It is hard to find out.

Thanks for answering! I think, in fact we have to do it on our own, but I hoped for thinks I did't know yet.

[LuckyLuke in reply to Camomi]

if your husband doesn't take levodopa it could be. For me it went like this: I used B1 for the first time when I wasn't yet taking drugs. B1 had not given me any benefit and I was followed by Dr. Fancellu (co-author of the study with Dr. Costantini) since I am Italian and live in Genoa. I tried the B1 again after I started levodopa therapy and.... BAM!!... the B1 worked great and still working! I haven't stopped since then. Only a few months off every now and then. I do 1ml injections twice a week. This is just my experience, not an absolute truth, everyone has to find their sweet spot!

[Camomi in reply to LuckyLuke]

He does not use any drugs. No, we read a lot about it and we are a little afraid for the side effects....I am glad to hear of your succes with B1!!!

[LuckyLuke in reply to Camomi]

I understand as I was afraid too...I was without drugs for the first 4 years after diagnosis (now are 10 and I'm 57). Despite exercise and supplements, after 4 years I started Levodopa. Each of us is different and must feel free to make our own trials and errors. I wish you the best and don't give up B1 because it really helps. It's not a cure, but it helps.

[kevowpd in reply to LuckyLuke]

The levodopa was what changed your life for the better, by the sounds of it.

[LuckyLuke in reply to kevowpd]

I was extremely disappointed by the B1 on the first lap, I started with enthusiasm, but I didn't have any benefits especially for the motor part. I did well with levodopa for 3 years, then I found myself having motor fluctuations (delayed on, wearing off, and everything that comes with it) despite paying attention to my diet, it seemed that the levodopa was no longer working properly expecially in the afternoon, I did not wanted to increase. My wife insisted that I try the B1 again and I tried, but without conviction. Instead I immediately felt the benefit which was mainly in the stabilization of the therapy. The motor fluctuations stopped, I was more fluid, more energetic, no tremors when I'm on. My therapy is stable since then, I have not increased it, I still work, drive, do gymnastics every day, travel and lead a normal life. I have bad days sometimes and my life is a challenge everyday as it is for every PWP. I don't live like a charm, I know I'm slave to the medication schedule, I have to pay attention to my diet and Parkinson's hasn't healed at all, but I'd give it a shot today to continue like this for another 10 years.

[Butterflygrandma in reply to LuckyLuke]

How much B1 do you take ? How did you find the correct dose ?

[Camomi in reply to Butterflygrandma]

I have Daphne Bryans book and followed what she wrote. We started low in marche and are now on 2000 mg a day. And I don't think we are on the right level now for I do not see less Parkinson. But it might be not very visible : we just go on. I hear here that dr Constantini startte with 4000 mg a day.

[Reetpetitio in reply to Camomi]

How about going to a kinesiologist? they will clarify if that supplement is actually strengthening for his body or not, or if a different dose would be better. You can also take different brands and see if that makes a difference. And of course other supplements too. Just make sure you haven't taken them for a few days beforehand.

[Reetpetitio in reply to Reetpetitio]

(take different brands to the appointment, I mean)

[M-o-ggy]

The book is not an accurate reflection of the work carried out on B1

Suggest you search B1 on this site. There is a lot of inf.

A lot of expert and knowledgeable comment which gives a balanced experience and feedback.

[Camomi in reply to M-o-ggy]

Thank you!!

[Mandoblast]

300? 1500? Wow, that's a lot. I can't take more than around 30-40mg/day. Just for some perspective.

[Camomi in reply to Mandoblast]

Daphne's book tells us we can go to 2000 - 4000 mg.....

[kevowpd]

B1 is a waste of time whilst your husband is unmedicated. Every month you go without at least trying medication is a month you will never get back.

[Camomi in reply to kevowpd]

I really didn't know this. I read in Daphne's book about a lot of people, like us, who are not using any drugs.I am confused.

I want the best for my husband.

[Windermere1 in reply to Camomi]

B1 works with or without levodopa so don’t be put off. You just have to work on getting the dose right.

[gwendolinej]

you won’t know till you try. You may find that it really improves him. Is it worth a try?

Gwendoline

[Camomi in reply to gwendolinej]

Yes, it might be...

[Reetpetitio in reply to Camomi]

You could also consider trying macuna pruriens first, which has similar results to meds, and some would say, better.

[Camomi in reply to Reetpetitio]

Thanks!!! I don't know what macuna pruriens is, but I saw that earlier, I am ging to look for it. And I looked what kinesiology exact is, I understand and it might be interesting for us!!!

[Reetpetitio in reply to Camomi]

Kinesiology is super interesting! If your husband would find it difficult having his arm tested then you could be the 'surrogate' and they would test you instead, while you're touching him. Just let them know in advance. They would also clarify whether his system responds well to macuna, and what dose. And also what else is up - does the liver need help; are the adrenals stressed; are there any parasites etc. And then what the body 'likes' for each of these. Sooooo interesting!

[Camomi in reply to Reetpetitio]

Ooh, macuna puriens is levadopa. Why would't you take something from nature?Do you know how much to give? I am ging to buy it!

[Reetpetitio in reply to Camomi]

If you search for it there was recent discussion about macuna... someone said they were doing well on a 15% standardised extract; can't remember the brand... there are also stronger ones... best to start low and then increase!

[chartist]

Dr. Costantini got his best results using high dose B1 in conjunction with C/L.

Here is another view on taking B1 and how to adjust dosing :

healthunlocked.com/cure-par...

Art

[Camomi in reply to chartist]

This gives answers to my questions!! Thanks!