NeuroTalk Support Groups - Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)

- - Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot (https://www.neurotalk.org/parkinson-s-disease/227981-term-treatment-dose-thiamine-parkinson-disease-label-pilot.html)

I would strongly suggest that if you go the oral route, try allithiamine, the only thiamine I know of that penetrates the blood brain barrier. It made an IMMEDIATE difference for me at only 50 mg a day. I tried them all benefontiamine, thiamine, etc) and it's the only one that worked and it worked quite well.

For me it was an immediate improvement in balance and coordination. You only have $20 to lose ..

Quote:

Originally Posted by BreezyRacer (Post 1182251)

I have tried to find allithiamine locally, to no avail. I will have to order it. I am looking at trying 100mg thiamine injection protocol. Are you thinking oral route is better? Certainly less painfull and easier.

Hi BreezyRacer, could you provide more details on how allithiamine has helped you with your PD?
I started to do a search on allithiamine and PD. It seems to behave as a Prodrug which, from what I can understand, is a molecule that when combined with a med like Sinemet can greatly enhances the ability of L-dopa to cross the BBB.
Never heard of prodrugs before but it is interesting and may be a great improvement in the effectiveness of Sinemet, meaning that more L-dopa goes to the brain and less to the body with less side effects. I guess I'll buy some.

http://www.sciencedirect.com/science...78517394002716

The plasma levels of DOPA demonstrated no significant differences between DOPA and the prodrugs. In contrast, however, brain levels of DOPA were remarkably elevated following administration of the prodrugs. Among the prodrugs examined, ZiPr-DOPA(P)2 was found to most efficiently facilitate delivery of DOPA to brain and this compound showed 30- and 3.7-fold greater increases in the AUC and MRT of DOPA in brain, respectively, than did DOPA itself. These findings suggest that a redox ring-closure system to a quaternary thiazolium can be used as an alternative chemical delivery system to the brain.

http://www.researchgate.net/publication/51790350

Abstract: L-Dopa is the mainstay of Parkinson’s disease therapy; this drug is usually administered orally, but it is extensively metabolized
in the gastrointestinal tract, so that relatively little arrives in the bloodstream as intact L-Dopa. The peripheral conversion of L-Dopa
by amino acid decarboxylase to dopamine is responsible for the typical gastrointestinal and cardiovascular side effects. To minimize the
conversion to dopamine outside the central nervous system, L-Dopa is usually given in combination with peripheral inhibitors of amino
acid decarboxylase. In spite of that, other central nervous side effects such as dyskinesia, on-off phenomenon and end-of-dose deterioration
still remain. The main factors responsible for the poor bioavailability are the drug’s physical-chemical properties: low water and lipid
solubility, resulting in unfavorable partition, and the high susceptibility to chemical and enzymatic degradation. Starting from these considerations
the prodrug approach has been applied to L-Dopa in order to overcome its metabolism problems and to improve its bioavailability.
The goal of this paper is to provide the reader with a critical overview on L-Dopa prodrugs here classified according to the nature
of the main chemical modification on L-Dopa backbone that led to the formation of the desired derivative.

http://www.ncbi.nlm.nih.gov/pubmed/15328496
http://www.ncbi.nlm.nih.gov/pubmed/21150770

Ashley

My experiences are in this thread below. I should clarify that I do not have PD, though when my symptoms started up, they were very much like PD. It took a long time but I did get to see a really good neurologist, but after much of my symptoms had been taken care of. I was diagnosed with dystonia.

There are a lot of studies around the world on PD and B vitamins and those studies led me in the direction of this thread. I have NOT taken Sinemet, either alone or with allithiamine.

http://neurotalk.psychcentral.com/thread218079.html

In the end I have to say that I had a long term B vitamin deficiency caused by candida overgrowth in my small intestine, likely for over a decade. Since I corrected this core problem and started supplementing with B2 and allithiamine my symptoms greatly improved. I tried other B vitamins as well and they made some difference for a bit but that was likely because a shortage of B2 will shut down the methylation process, which is the conversion process your body goes thru to make a range of B vitamins use-able.

BTW a late post on the thread by someone else said that they have to using higher does of allithiamine to great effect for them. I think he/she was diagnosed with PD. You might want to PM them.

I hope this helps.

And BlackFeather, yes, allithiamine is hard to find. I get mine from Life Extension though it is not made by them. The brand I use is Ecological Formulas.

Quote:

Originally Posted by Blackfeather (Post 1181888)

I had an appointment with my Neuro today and provided him with the info on this thread about thiamine. He was very receptive and he agreed to try it. He told me he uses thiamine as a treatment for some of his patients with dementia. I will be given thiamine early next week. I am looking forward to trying it. Will keep folks posted.

Hello Blackfeather

I am very curious about your experience with injectable Thiamine. Did you begin them back in November? I have a friend that will begin treatment injections next week. For the last 2 weeks I have been taking 100 mg of allithiamine and I'm cautiously hopeful.
Thanks
Victoria

Quote:

Originally Posted by VICTORIALOU (Post 1196232)

I'm curious to know if anyone here is still taking thiamine and if so how much.

Thanks,
MD

Quote:

Originally Posted by moondaughter (Post 1270596)

I'm curious to know if anyone here is still taking thiamine and if so how much.

Thanks,
MD

A lot of folks on Health Unlocked PD forum seem to be having very favorable response to Thiamine, mostly in pill form. Some are using thiamine injections. I tried thiamine injections 3 times and felt worse. It made me tired, irritable and with a headache each time it was given. I gave up on it. I tried high dose thiamine supplements for 3 months and never saw any improvement. Though lately I'm thinking of giving another try. As for injections, I understand they sometimes use aluminum as a stabilizer/preservatives in in injectable liquid thiamine. Maybe that is the reason I found it intolerable.

Quote:

Originally Posted by ashleyk (Post 1270651)

Worth trying for 6 mo's? Recommended dose up to 400 mg day.

Certainly a lot of information- but , I read your post to say you hesitate to try it yourself...would you care to share your concerns Ashley? For me I feel a bit reserved because it seems to me that whenever people get into micromanagement of symptoms especially with chemistry eventually other imbalances develop that lands a person deeper in a negative feedback loop. Having said that I rely heavily on a couple of supplements targeted at specific symptoms and am very very grateful for their efficacy.

Kind Regards,
MD

We saw no changes:(

Well, we tried this several years ago and noticed not one bit of change. The hardest part was finding a doctor willing to script it, because our neuro was unwilling for whatever reason.

It isn't easy to stab yourself (or loved one) with these B1 injections day after day after day, so if you're going to try this, you might want to get mentally prepared!