Thiamine

[Trixiedee]

Has anyone with advanced Parkinsons had success with high dose thiamine therapy?

[Fallenirish]

Hi Triciedee,I have been using HDT for about 2 months now and I have noticed that I feel stronger and have more energy ! Additionally, I take fewer doses of C/L - from 5 to 2 or 3 good luck

[Trixiedee in reply to Fallenirish]

How long have you had PD? What dose are you taking of thiamine?

[Fallenirish in reply to Trixiedee]

I was diagnosed about 2.5 years ago but I had symptoms for at least a 1.5 years prior to that. I am almost 72, and I take 1500 mum x 2/ day

[Trixiedee in reply to Fallenirish]

I’ve had PD for almost 20 years which is why I was asking if it had helped people who’d had it a long time.

[Astra7 in reply to Trixiedee]

That’s a long time. How are you coping?

[Puneetforjosh]

Start thaimine atonce.my father at stage 5 recovered to stage 3 in 75 days.its a miraculous cure.write to constantini

[DianeF]

I am highly skeptical about fads and cures and started thiamine hcl about 2 months ago not expecting any results. I am happy to say I have more energy and feel better than I have in years. I didn’t realize how foggy I felt until that feeling cleared with the thiamine. I did have to play around with the dose and couldn’t tolerate the highest dose recommended, but again, everyone with Parkinson’s is a little different. My last neurology exam was “normal”.I also consulted with Dr. Constantine by email. He is very gracious and accommodating.

[Trixiedee]

I have ordered injectable thiamine as I’m terrible at remembering to take supplements regularly. Still haven’t heard from anyone who has had PD for a long time though.

[Hidden in reply to Trixiedee]

Trixiedee,

I am not aware of any long term PWPs (20 years plus) on this forum who have tried HDT. I remember I started a discussion on that subject a while back, but there was not much response from long term PWPs (20 years +). The only information we have for that length of PD is what Dr. Costantini has told us regarding his long term patients in Italy. Basically what he has said is that almost all patients will respond to HDT with a reduction of symptoms as measured on the UPDRS testing and visually in his videos.

Patients in stages one and two generally show the greatest improvements and some are able to get by on HDT alone indefinitely with no prescription meds. Patients in stages four and five can also show significant improvement as noted earlier in this thread where the patient went from stage five back to stage three. One of the main benefits he has seen in all stages is that HDT seems to very significantly slow or halt disease progression for the duration of his experience with HDT (5 1/2 years+). His videos on line tend to confirm what he is saying. At a minimum, he says all responders appear to slow or halt disease progression.

Since there is a lack of studies into the use of HDT in PWPs and such studies seem highly unlikely, the people who are testing or using HDT are doing so based on the very good safety profile of HDT.

Trixiedee, this puts you in a class by yourself on this forum if you decide to move forward with your testing of HDT! As such, there will be many other members who are going to be very interested in your specific results including myself! If you are able to obtain good results on HDT, it will likely generate much more interest amongst other 20 years plus forum members who possibly view HDT as just another in a long list of "latest thing" protocols. Going back through old posts on this forum you will see many things that have generated a lot of initial interest and modest results in a few individuals and then the posts just seem to dry up and then stop, suggesting a likely placebo effect. The further back you look, the more that you will realize that HDT has diverged from that seemingly endless repetitive pattern set forth by many on that long list of the "latest things". The results in forum members seem to be "durable and many", based on their feedback posts on this forum. There are members on this forum who are claiming that they feel that they have returned to a place where they are approximately 90~95% of normal! Granted, these are the best responses reported, but I think you will be hard pressed to find any other single thing on this forum when added to a standard PD drug regimen that has produced results like this and doesn't cost an arm and leg to use! In fairness, it should be clarified that these are members who have had PD for less than 10 years when starting on HDT and I doubt it would be a realistic expectation for members with 20 years of PD duration to expect the same. On the other hand there are also members with 10 years or less duration with PD who have not returned to 90 to 95% of normal, but have gotten very good symptom improvement and if the durability of HDT continues to show little or no disease progression, then this is still a very good thing that may allow them to be around to try other treatments that are only now in the pipeline or about to get into the pipeline of up and coming drugs or treatments!

If you do decide to move forward with testing HDT, please keep the forum updated as I feel certain there will be a very significant number of the members here who will be extremely interested in "your" updates!

Here is a link that will answer many of your questions about HDT, Dr. Costantini, member results, contact information and much more!

healthunlocked.com/parkinso...

Thank you!

Art