Too much

[Joynb]

I would enjoy a few days with no mention of thiamin. This vitamin is being pushed too hard and sometimes inappropriately. I realise it has been very helpful for some people but not all have the same needs.

[danfitz]

Can’t you simply not read the thiamine posts? Others want the information.

[Joynb in reply to danfitz]

The information is already here repeatedly. In one post thiamin was heavily pushed to a young man who does not even have a diagnosis. We are NOT doctors and shouldn’t make what seem to be coercive recommendations.

[park_bear in reply to Joynb]

I agree with you but in such cases it is not just about the thiamine. If someone does not have a diagnosis and does not even have Parkinson's symptoms, there is only one thing we should be pushing - get to a doctor and get a diagnosis. We are not in any position to know what is going on with that person. It could be something minor or it could be something really dire that needs immediate attention. I understand the temptation to give reassurances to relieve emotional distress, but there are times when those emotions need to be channeled to action.

[Hidden]

Joynb, when PwP or their caregiver post a question the answer may help them with thiamin hci I will not reply. Will that help you and relieve stress?

[Joynb in reply to Hidden]

That’s not the point. I believe several people are pushing thiamin too hard and sometimes inappropriately.

[Don_oregon_duck in reply to Joynb]

When something comes along that has helped so many people in such a short time it is hard not to talk about it. For my friends and family, they are getting very tired of hearing me talk about it. But, lucky for them, they don't have the same disease that I have. Also, FYI, I found out, just recently, there are sites that will not allow any discussion about thiamine.

You do bring up a good point, for those try the thiamine program and after 90 days do not find any health benefits, are we being unfair to them in favor of the new person asking for help?

[Despe in reply to Joynb]

Are you a medical doctor? Just curious. . .

[bassofspades]

Lets be honest here. We are all desperate forhope! First coconut oil then mannitol, now thiamine. I want to eat it like candy, im so tired of feeling like crap all the time. The benefits so far appear to far outweigh the risks. Thats why everyone is going kookoo for the stuff. After all, we're only human. Sorry if it bothers some people. To me, healthunlocked is a collective think tank with the common goal of lets help each other get better here!

[jimcaster in reply to bassofspades]

You are “spot on” bassofspades. 😊

[bassofspades in reply to jimcaster]

Dilly dilly!!

[munchybunch in reply to bassofspades]

Spot on!

[Nitro53]

Don't care for good news? Try Fox news.

[DianeF in reply to Nitro53]

Thanks for making me laugh out loud!

[Hikoi]

Well there you have been told Joy!!

FYI: 1 Australian female asked the question and 5 USA males responded so far. I think there is a study here on cultural difference in health expectations and posting behaviours.

[Joynb in reply to Hikoi]

Thanks Hikoi. I think my comment about inappropriate posts has been well demonstrated. One of the participants has even put an unpleasant comment on a post of mine on a quite different topic.

[danfitz in reply to Joynb]

What is the difference between his “unpleasant “ comment and your presumably “pleasant” comment?

[Joynb in reply to danfitz]

I was discussing a topic, he was having a go at me unrelated to the topic of a post from some time ago.

[danfitz in reply to Joynb]

I think he was just trying to be humorous. He did not criticize you he just made the same request you did listing several popular topics here. I don’t think it was mean spirited, just ironic.

[jujulini in reply to Hikoi]

i am a female from the us, and i agree with the males. if you arent interested in the post, dont click on it. there are plenty of other topics.

[PixelPaul]

It seems rather obvious, but if you're tired of reading about Thiamine just don't click on the posts with Thiamine in the title?

[Kellypeters]

With respect I don’t think you can dictate what others want to talk about. Fair enough you might be sick of it but you can choose not to read them. When someone finds something helpful it is natural to want to share it with others. They may be over enthusiastic at times but it cones from a good place. Everyone knows it is not professional advice but each persons option. If there is a chance someone is helped then it is worthwhile I think. Everyone needs to weigh up the information and advice they receive. I for one have found the research and advice from others here extremely helpful especially in relation to thiamine.

I know this will seem ironic but can I ask have you tried thiamine?

[Joynb in reply to Kellypeters]

I have purchased a jar of high dose capsules. Now deciding on the dosage and will then give it a go.

[Hidden in reply to Joynb]

It sounds like you may try thiamine soon, where did you hear about it?

Art

[Kellypeters in reply to Joynb]

Can I suggest you email Dr Constantini first with your details. [e-mail] Length of diagnosis, symptoms age weight etc. Getting the dose right for you seems to be important if you want the best outcome. Wrong dose can make symptoms worse so it is worth getting some expert advice before you start. This may be one reason it doesn't work for some people. I hope that for you it does!

[ryanJames1]

I am so thankful for all posts on here it is a diverse community with many different views we are so very fortunate to live in such an age where we can enjoy such a sharing of knowledge and experience s

I have based all my treatment s on the reviews and experience s of others on this site so again I say thank you for sharing your findings

I am still med free and doing well as John pepper says tremors are a part of my life but that doesn't stop me doing most things

To all have had input on my progress thanks for posting and sharing!

[Gioc]

hi Joynb,

in fact you're right, what are we doing here to talk about thiamina, who to favor those who do not, with inappropriate actions? you're right we're not doctors, but the doctors do not want to talk about it, the cases are always two or we are wrong, but too many people have benefits or someone does not want to see. Frankly speaking to me here to talk about thiamina I feel inappropriate. But those who say they take responsibility for treating, protecting the patient and then searching new treatment, not to look at a potential treatment, simple and inexpensive, but not patentable, make all of us inappropriate as civilization. And I'm not talking about the doctors doing their job. A pharmaceutical company in Italy has created a line for the production of eye drops based on GDNF which cost € 250 million, this eye drops cure a rare eye disease and each treatment costs € 15,000. This explains how this company will fall from the investment : at the expense of the tax payer. And look at how much we talk about the GDNF on HU, it's an expensive and patentable medicament that's really inappropriate to make it pay so much.

mobile.ilsole24ore.com/sole...

Gio

[Benidorm66]

I am so grateful for any information about Thiamine on this site, the more there is the better for me. As earlier posters have said, if you don’t want to read the post, don’t read it,!.,

[kgold]

I can appreciate where you are coming from. I am on some closed facebook groups that discuss health. After a while I had to unfollow them because of the incessant questioning of this and that. So now, I just check in on them from time to time. Life is too short to let these relatively small things get to you.

So far, I have found this group to be a breath of fresh air. I came here through a google search for lithium orotate and LDN and subsequently signed up. My husband is the PwP and I have found much great info here so far, including thiamine. I think people gravitate to sites like this because the "main stream" medical profession has failed them in some way. As for my husband, his movement disorder specialist was accepting of him trying things the first few years. Then, she started to badger him with, I kid you not, "Mr. G, when are you going to start my drugs?" So, yes, that is why I'm here.

BTW, I love Australia. Been there once, a long time ago. Fell in love with the wombats after being a koala lover.

[bcowart in reply to kgold]

I am curious how LDN and Lithium Orotate have worked for you (and for anyone else).

Bob

[ktbate in reply to bcowart]

Bob, I have tried LDN. I know it works for things like MS and Crones, Arthritis. Not much if any research on PD and LDN. Took it for 6 mo. 1.5 mg - need lots of time to figure out dosage. Very hard to get a doc to write a script. Good luck!

[kgold in reply to bcowart]

Hi Bob, haven't tried the combo yet. Husband tried LDN early on after his dx but started out at the max dose, 4.5 mg. I think he took it for 3-6 months. Didn't seem to do anything at the time. Still on the back burner.

[4000Nights]

i think Joynb meant well... as did all the respondents.... well except perhaps the one re Fox News.

She raised a question that was appropriate to raise and the vast majority obviously disagree. That tells me something. I heard about Mannitol here and tried it and i think it worked. Now it is time for me to try thiamine.

ty all!

[dreem]

just bypass what you dont care to read. Ask what you would like to know. One thing dont work for everyone,but worth the try if it is safe. I wish you the best with something that will help. I am giving B1 a try, I just got my email this morning on the doseage

[Parkie-]

I had tried the thiamin protocol in March and had abandoned. BUT THANKS TO REPEATED INFO ON HU, I wrote to Dr Costantini, and following his reply, I am giving this another try. It has only been a few days and this morning, when I took my first steps in the hallway, my affected foot did not feel like concrete... Only time will tell, but right now, I am greatful for the repeated info on thiamin.

Edited Aug 2018: B1 was unsuccessfull for me. Even 200 mg a day induced overdose. Tried both pills and injections, tried quite a few times, short tries, longer tries, etc.

[TheGimba in reply to Parkie-]

Hi, Just curious what a thiamine overdose would look like?

[Parkie- in reply to TheGimba]

Hello TheGimba

Augmented movement tremors, jittering, relentless feelings.

[KERRINGTON]

I have researched the use of thiamine hcl extensively, and the results show this supplement is helpful for a number of ailments. It seems to be of great use to many on this and other sites. Now I'm on it, and therefore revisit new, and old thiamine posts, and ask questions constantly. I think people on this site are open to trying out safe things, and are kind, and patient, which makes us feel more comfortable, so we don't hesitate in asking the same question over, and over, esp as our personal situations change.... Also, there are so many new people starting b1 they have a million questions too.

[munchybunch in reply to KERRINGTON]

What else does it help with apart from Pd pls?

[KERRINGTON in reply to munchybunch]

Hi ! I get most of my info about supplements from what I feel are fairly reliable sources. My picks for info about thiamine are Life Extension ( go to the site, type in thiamine at the top, then Articles on the left ) this will take you to all news articles about work, efficacy, uses, etc of thiamine.

Go also to Dr.Joel Furhman, Dr Andrew Weil, Dr Ronald Hoffman.....& ( Dr. Ray Shalellian , who sees things a bit differently).

[jt12]

I just want to say that this disease sucks and I think we're all trying to find something that will relieve the troublesome symptoms and prolong them from getting any worse. I am all for doing whatever you feel you need to do or try to fight against PD. So do what you need to do for YOU. We need to encourage each others fight.

[bassofspades in reply to jt12]

Here here!

[Dragona]

I always look for the thiamine posts I am very interested in everyone's response to it, there are some items I am not interested in so I just miss them out, please don't stop thiamine posts

[Hidden]

Joynb,

If you were looking for a reprieve from what you consider to be too much information about thiamine, I don't think your post worked, as you have currently added 34 replies about thiamine to the forum with your single post!

Good luck going forward with your thiamine experiment!

Art

[jujulini in reply to Hidden]

lol...ive been thinking the same thing!

[marion11005]

Personally I've been scouring this site for any and all news about thiamine. I hadn't visited this site for quite a while, and was thrilled to see all the good news about it.

[ConnieD]

I think Joy doesn’t mean any harm, I’m just seeing this thread for the first time. Having been on this forum for a year and a half it has changed a lot from when I first joined. Many regulars like Silvestrov no longer seem to post, I don’t know why. I think the discovery of thiamine is awesome and exciting for many so it’s going to get a lot of coverage. There were more topics at one time but thiamine certainly by far has helped people the most since I joined. For many it’s been life changing , others are still trying to determine a proper dose, and others have decided it’s not for them. The only thing that troubles me is when I’ve read someone say to people on more than one occasion that if thiamine doesn’t work for you you will have a terrible future. This I feel is unfair and unkind. We should be careful of taking hope away from anyone. Dr. C. Is wonderful and his discovery of high dose thiamine is amazing and deserves attention. Yet let’s remember all PD sufferers and to those who thiamine hasn’t been a miracle pill I say don’t lose hope I truly believe there is more than one way out of this maze! You never know what may be right around the corner! Be strong and keep the faith !!❤️