Quick follow up on progress. B1 since end of May. Parkinson's Dr. saw me yesterday to follow up on my recent testing. He started off by asking me what I was doing different these days as the results of my tests and his visual inspection of my current persona indicates that I am "better than when he officially diagnosed my Parkinson's over a year ago". All of my PK markers are gone except for a very slight right hand tremor that comes and goes intermittently. Having said that, he said that observing me now it would be hard to diagnose Parkinson's if he didn't have the DaTscan and his historical records of his observations from 6 mos. to a year ago.
I fully understand that I am still a PK diagnosis but on the basis of my current condition I feel I can live the rest of my life fully and with vigor. I give all credit to Dr. Constantini and you good folks on this forum. To anyone struggling, keep up the fight and don't stop searching for your answers. They are out there and I think there are better days for us all to one degree or another.
Written by
st8farm
To view profiles and participate in discussions please or .
I'm still in the process of finding the best dose, but with Dr Constantini's guidance and stories like yours, I'm becoming more hopeful that I will. Your report is one more in a growing list that is quickly making it much harder for the critics to ignore what's happening.
It seems to me that it would be better to document these experiences, rather than complain that they don't understand the science behind B1 and therefore reject it. Something is happening here. Sooner or later, it will be studied by professionals and answers will eventually be found. Right now, I think that we should be gathering as much data as possible. Maybe work with Dr C's staff to supply them with our data so there's one centrally maintained database?
st8farm,
Fantastic news!!! I am very happy for you and your success with Dr. C's protocol!
Would it be okay if I copy and paste this to the who is taking thiamine page for others to see? I will post it as a reply to one of your original posts. I think your DatScan will come in handy for you somewhere down the road!
1. apart from thiamine B1 what other medication(s) were you on?
2. can describe how pronounced your tremor was before the improvement (since there is no scientific numbering that can be attached to how pronounced tremor is... any crude description relative to your current tremor symptom would be fine)
3. and for how long has your symptom improvement been sustained?
I also take B12, Sinemet, and for diabetes I take Metformin and Victoza. The tremor went from too pronounced to hold items in my right hand to intermittent (quiet for prolonged periods) able to be controlled by recognizing it is happening and concentrating on the issue for a moment. At this juncture it is not evident to most people that I have the tremor. The improvement can be traced from the introduction of the B1 to now. May till now. Hope that helps.
How soon after you began taking B1 did you recognize any noticeable Improvement? Also, were you experiencing other symptoms as well such as stiffness, freezing, slow movements, drooling , or anxiety and if so did you experience any Improvement in these?
Also, were you experiencing other symptoms as well such as stiffness, freezing, slow movements, drooling , or anxiety and if so did you experience any Improvement in these?
I was corresponding with Dr. C recently and he mentioned that when you start B-1 and see initial improvement right away that is followed immediately by a worsening of symptoms right after the improvement. It is an indicator to help determine the correct dose. What he has determined is that the sooner the "worsening" appears, the lower the required dose is likely to be. If I remember correctly, you got a couple of days of improvement followed by worsening of symptoms? At that time we weren't always in contact with Dr. C as we are now and so we didn't have a clue about what your reaction might have meant, but now we do!
I too have experienced an almost complete absence of tremor. Began B1 in April. My now intermittent fine tremor can also be stopped by concentrating on it for a moment. It’s so minor it’s difficult for others to notice.
I’ve recently made big strides in gait improvement as well. My gait feels normal 80+% of the day. Could it be due to the 20 days of travel to Europe I’m on? I’ve read PWP stories about symptom reduction while on vacation. I’ll let you know once I’m back home.
While in Italy I visited Dr. Constantini. It was nice to meet him and deliver some gifts, thanking him for his work and never ending support.
I knew before i went that he would not support my use of Mucuna in lieu of Sintement. Mucuna works well for me, so we didn’t agree on that point.
If I understood him correctly Dr. C thinks it doesn’t make it to the brain in the way Sintiment does. He told me in an earlier email that he doesn’t have experience Mucuna and therefore cannot comment on it.
I find most Neurologist prefer Sentiment to Mucuna.
Yet another one.. Congrats, wish you all good!! Last week I visited my neuro. He hasn't seen me for four months actually. After the examination he asked to see again my DatScan (done when I was diagnosed 5 years ago.). He coud not believe that this is me, the same patient and wanted me to do DatScan again. He said, I do look like a healthy person let alone Parkinson's.. Should I do it after five years again..? Is it safe..?
If you're fine what do you want to tell you the dat scan, which you have the PD? or you have it or you do not have it ... I'm very happy you're fine. Dr. C says we are healthy carriers of the disease. LOL
Congratulations! I'm happy for you and encouraged by your success. My experience with B1 starting in May, vigorous exercise, Tru Niagen, Vitamin D, and a multivitamin B is similar. Keep up the great work and keep motivating the rest of us! 😊
Good news for you, I started taking HD B1 about 3 weeks ago, not much to report as yet though have been having leg pains in thigh and calf muscles, not sure if could be associated with the HDB1, currently taking 2 x 500mg in the morning when first get up (around 6.00am) then a further 2 x 500mg around lunch time (12.00 noon) as suggested by Dr C. What dosage are you taking and when?
I mentioned it to him several months ago and he figuratively patted me on the head and said "that's nice". This time I sent him three links to the internet and we will see what his response will be. My general MD is much more receptive to the information and encourages me when we visit.
We've got another WINNER! So happy for you and Dr. C. as his scientific research on B1 therapy against PD has paid off huge dividends. I hope and pray that I will report similar results for my husband in about a month. Keep on fighting!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
B1 and anti anxiety pills
Starting on B1
B1 dosage warning
Interesting B1 observation
