Karen (San Diego, Ca) on 09/28/2018
I feel like a different person now. Still far from who I was before PD but now I can do my daily activities slowly and no longer suffer anxiety, off the Xanax I took for 3 1/2 years, and minimal depression. I get the blues on occasion. I only take Selegiline 5mg twice a day as a prescribed medication. I was prescribed 7 medications previously.
I started high dose B1, Thiamine, June 2018, taking 1/4 teaspoon in water, twice a day. I did not notice any change in my symptoms. I increased it to 1/2 teaspoon in water, twice a day, still no change. I continued taking it anyway. I then purchased capsules, 500mg. I take two, twice a day. I started noticing that I was using my right hand for things I could not do before. The changes have been subtle but to me significant, giving me hope. I have more energy and feel more alive. My movements are more fluid.
I must add that I also changed my diet. I have been vegetarian since I was 16 but now I am, or try to be, gluten free, dairy free, plant based diet. I suffer chronic pain and wanting to decrease inflammation. I also added the use of low level red light therapy. Not sure what is working but I feel I have turned a corner and instead of declining I feel I'm improving, very slowly.
Thank you.
Replied by Janet from In on 09/28/2018
Karen,Amazing and wonderful for you.
Did you buy basic powdered thiamine? If you do not mind. Could you say exactly what you bought, what form? Thanks.
Janet
Replied by Art from California on 09/29/2018
Karen,I am very excited for you about your results using vitamin B-1! Congratulations! Your willingness to consider something other than the standard meds is going to pay dividends for you through the years! Standard PD meds can not currently slow disease progression at all, only suppress symptoms, but what you are doing is very proactive and will be able to do something important that the meds can't! With standard meds you just watch your symptoms worsen and neurologists will do their best to adjust your meds, add meds and give other meds to help try and offset the side effects from the meds they give you, but all the while the disease continues to progress and your symptoms will increase and worsen, but you have stepped out in front of this horrible disease and are changing that course for the better!!!
I was wondering what result you are getting with the "push test" compared to your push test pre-B-1? Also I am curious as to your improvement on your UPDRS test since adding thiamine? Are you at least at a 50% improvement on your UPDRS test?
These are two tools that can help confirm whether your B-1 dose is optimized or not. You can achieve symptom improvement with a dose that is too low, but you can achieve maximum improvement at the optimal dose which can likely be found by continued testing on your part. I can tell you more about that if you are interested.
You are already past the "honeymoon period" at 8 years since diagnosis, so your symptoms were more likely to decline at this point, but B-1 is showing the potential to very significantly slow or halt disease progression at the correct dose in well over 3,000 patients now. There is currently only one patient with a 5 year old DatScan and a recent DatScan. That recent DatScan shows no disease progression in the 5 years! This is very exciting news, but there are many patients who have been on B-1 for over 5 1/2 years who have taken a B-1 holiday until their symptoms returned, but in no case have the symptoms been worse than when they started B-1! Once the symptoms had fully returned, they started back on the same dose they had been taking and once again the symptoms diminished or were fully suppressed! These B-1 holidays can be taken on a regular basis with no ill effects. Usually in the range of one month to three months.
Another major advantage to B-1 is that once you have fully optimized your dose, perform a good "push test" and are stable, you should not have to increase your Sinemet or other Levodopa / Carbidopa dose and may actually be able to reduce it a bit. This is the exact opposite of what normally happens on these meds which usually need to be increased as the disease progresses until they are finally no longer effective!
Another point I would like to make is that it is possible to not only optimize your thiamine dose, but you can also optimize the dose of your C/L med to the B-1 dose to achieve maximum improvement, especially in terms of motor symptoms, but the B-1 at the proper dose is also very effective against non-motor symptoms!
Karen, please keep us posted on how you are doing and if you have any questions, let me know.
Art
Replied by Connie from TX on 01/01/2026
UIT HAS BEEN A WHILE SINCE YOUR POST! I was wondering how you are and if the dose you mentioned was your final dose. I’m going through the diagnosis process right now. I don’t think the neurologist is implied to provide a diagnosis to me. We’ll see. I don’t currently take any medication that she has written as yet!!!Replied by Ruralady from Illinois on 01/02/2026
Their is a skin test (SynOne) and a MRI test that can give a definitive diagnosis now. The skin test is easier and cheaper since ins pays for most of it.
