High dose Thiamine/ B1 in New Zealand

[nellie58]

I wonder how many New Zealanders are now following Dr Costantini's high dose thiamine/ B1 protocol? Do you have support from your GP or specialist?

It would be interesting to get together a list of Drs who understand the protocol so newly diagnosed people in NZ can get some support and encouragement to start on it early.

Nellie

[PEB69]

Hi Nellie,

My husband saw Dr Kamal Karl in Auckland once, and he knew about it and seemed enthusiastic. He’s a functional Dr and is expensive. We haven’t bothered to mention it to our GP, at my husbands last visit I explained to her that as a YOPD we are mindful of delving too fast too soon into pharma drugs and are managing very well on supplements and alternatives, I said if he was 70 or so it may be a different story and we got ‘the eye roll’. I think it will be very hard to find a GP that is willing to read up on B1 and support you, plus once you get your head around it I think it is able to be managed by yourself. As for a specialist, he hasn’t been for over three years, it was all doom and gloom, no talk of anything positive, we felt he was just here to monitor his demise and I know for sure they wouldn’t support any of the supplements or alternatives he takes. He may need to seek one out in the future and we will deal with that then. Reading about how well your husband is doing this far into his journey is encouraging.

[chartist in reply to PEB69]

PEB69,

I think the majority of members ran into similar difficulties with their neurologists regarding the use of B1 and other supplements, so in that sense, this forum has been useful for feedback regarding how everyone is using B1 effectively. Here is a link to a post which contains a link to all of the information that Dr. Costantini left with us along with member feedback on B1 :

healthunlocked.com/parkinso...

Art

[PEB69 in reply to chartist]

I agree, this forum is a blessing in that respect. I know for a fact if we hadn’t found this forum my husband would be worse off now just following the pharma route. We did contact Dr C and had dosing info and videos sent etc, then of course he became unwell

[nellie58 in reply to chartist]

We would love to find a decent specialist in NZ, so if someone has found one please share🙏 My husband has seen a few over the years but they seem to have tunnel vision and have offered little in the way of help. So grateful for this forum and you Art, Roy and others that are so happy to help us.

[Cleo16 in reply to nellie58]

If you find one in NZ please let me know. 🙏 Mine are pleasant but focused on meds.

[whatadrama123 in reply to Cleo16]

ditto

[nellie58 in reply to PEB69]

Oohh, my husband used to see Kamal Karl and so did I. I told him about our visit to see Dr C and about our journey with B1 so I am pleased he acknowledges it. He was too expensive to continue with and quite frankly I have learned far more off this forum than him.

[YulikaK in reply to PEB69]

I’d like to find someone in Australia

[Jennyjenny2 in reply to YulikaK]

My husband now sees Dr Victor Fung, Westmead Specialist Centre, Sydney. He doesn’t know a lot about it, but he’s certainly not opposed to it. We had an appointment with him in February 2020 and when we told him my husband had been taking HDT for approx a year, he was interested to hear about the benefits, so the word is getting out there.

[LAJ12345]

Yes please if you find one let me know too. I gave our doctor lots of info, booked a double appointment and asked him to read it before we came but he wasn’t interested.

[nellie58 in reply to LAJ12345]

These doctors are so disappointing 😞 It is a lonely and confronting journey for us all, caregivers and patients alike. We have all learned a lot with our investigative skills but how nice would it be to have a guide and reassuring confidante? I will certainly post on here if that magical person shows up and please do the same..

[Chicachi]

I have tried B1 according to what I read on DR C website but without a doctor helping me. I didn't notice any difference but may not have taken a high enough dose. However, for those who are trying to avoid depending on meds, I have done well since early 2017 on homeopathic remedies and supplements. I still have tremors but they are slower now. Pain is much less. I just wrote and illustrated my first book, Princess Part Manners, on Amazon soon. Don't give up.

[Chicachi in reply to Chicachi]

Book is Princess Party Manners

[nellie58 in reply to Chicachi]

That is great to hear! Congratulations on your book 💗

[rajbhai]

HI,i am a kiwi originally a indian ,decsent ,i am currently taking cenemet cr ,symetryll ,vitamin b complex,,and aged 58,suffering f rom this horrible disease from 20 years , i would like to try thiamine but my neurologist have never mentioned this please do post your experience if this helps ,significantly form parkinsons.thanks

[nellie58 in reply to rajbhai]

So sorry to hear this, you were diagnosed so young. My husband was early 40's when he was diagnosed all those years ago. You will not get any joy from neurologists here with any other treatment other than what they were trained in. They have no interest it seems in opening their eyes nor listening to their patients on what is working or not working. If you want to try the high dose thiamine protocol you will need to have the courage to learn and try it on your own. There is so much information on this forum and Art has posted a link on this thread. You are in charge of your own health. Don't be discouraged by unsupportive people.

B1 (thiamine) HC1 cannot hurt you no matter how much you take. It is also not expensive. You can buy the tablets online.

Good luck and sending 💜

[rajbhai in reply to nellie58]

Thanks for your reply ill try my best asi am suffering from this nearly 20 years now. iam not lossing this battle so easly ,thanks

[Smittybear7]

Thanks for your information. I'm looking for a practitioner in Pittsburgh Pennsylvania that works with vitamin B1 therapy. Would appreciate any ones suggestions. Thanks in advance