Update on B1 effect for St8farm - Parkinson's Movement

Parkinson's Movement
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Update on B1 effect for St8farm

st8farm
st8farm

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.

55 Replies
oldestnewest

That's great news! Congrats!!

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?

Hidden
Hidden

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!

Thank you!

Art

st8farm
st8farm in reply to Hidden

No problem. I'm just commenting on my experience. If it can help anyone else, go for it.

Larry

Thank you so much for that clearly written report.

And the hope it conveys.

I recently had visit with my neuro. You and myself have a mirror experience.

Hidden
Hidden

Larry,

I forgot to ask if you told your doctor that you were taking B-1? If you did, what did he say about it?

Art

Wahoo! Congratulations!

Many congratulations!

Hello st8farm,

I'd like to ask,

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?

thank you

st8farm
st8farm in reply to Grumpy77

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.

Grumpy77
Grumpy77 in reply to st8farm

thank you very much, it helps.

Bocabarby
Bocabarby in reply to st8farm

We’re not able to find B1, can you tell me where you get yours?

lionessroar
lionessroar in reply to st8farm

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?

st8farm
st8farm in reply to lionessroar

About 5-6 weeks

lionessroar
lionessroar in reply to st8farm

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?

Hidden
Hidden in reply to lionessroar

lionessroar,

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!

Scroll down to question #50 in the link below.

healthunlocked.com/parkinso...

Art

st8farm
st8farm in reply to lionessroar

Soft voice, clarity of thinking, slowing movements, along with the hand tremors.

Super good news! Hope for all of us!

st8farm

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.

Life is near normal and the future looks bright!

Grumpy77
Grumpy77 in reply to Cons10s

Hello Cons10s

If I may ask, which Mucuna specifically do you use?

thanks

Cons10s
Cons10s in reply to Grumpy77

Grumpy, I use Barlowe’s Herbal Elixirs 40% L-Dopa, and take 3-4 daily.

Grumpy77
Grumpy77 in reply to Cons10s

many thanks

Lbi1608
Lbi1608 in reply to Cons10s

How long ago were you diagnosed with PD? Why does he object to mucuna?

Cons10s
Cons10s in reply to Lbi1608

LBI, first motor symptoms were February 2015.

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.

Please tell us about your Mucuna usage brand, amount, purity percentage etc. and any other supplements or medications. thank you

Only B1 and Mucuna brand as noted above.

Bocabarby
Bocabarby in reply to Cons10s

Where is Dr. Constantine located? We’re travelling to Italy in October.

RoyProp
RoyProp in reply to Bocabarby

viterbo italy

Hidden
Hidden in reply to Bocabarby

About 45 miles northwest of Rome.

GioCas
GioCas in reply to Bocabarby

you arrive by train or car, and there is no need for a mountain guide.

01100 Viterbo VT

goo.gl/maps/n4GkX56waq42

Cons10s
Cons10s in reply to Bocabarby

We hired a driver and from the middle of Rome, it took 1 hour and 20 minutes.

That is so awesome☺☺☺

Great to hear your news Larry - keep on winning the battle :-)

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..?

GioCas
GioCas in reply to dadcor

Dadcor

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

wonderful to read such tributes to dr C

How much B1 are you taking

Thank you, reading this post is the most encouraging way to start the week..

Thank you for sharing your info with us and congrats on a positive report.

So happy you got a good report,if we all could get a report like that we'd be a happy bunch of Parkies.😊

What dose B1 do you take? Thank you!!

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! 😊

Well done. Started 4 weeks ago on B1, little change as yet.

Prospects looking good.

Have started on a course of MDTP for Dysphagia so I may be able to eat food soon.

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?

st8farm
st8farm in reply to jambar

I am 230 # and take 4 grams per day. 2 AM and 2 PM

Hidden
Hidden in reply to st8farm

st8farm,

I asked you the following question earlier in this thread, but I didn't see your reply:

' I forgot to ask if you told your doctor that you were taking B-1? If you did, what did he say about it?'

Art

st8farm
st8farm in reply to Hidden

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.

Hidden
Hidden in reply to st8farm

Thank you, Larry!

Good to know and I hope you are able to turn his head around!

Art

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!

Wonderful news.

Needs repeated again and again. Drive the sceptic and placebo challenges nutso.

Hopeful.

Is there a link? Explaining how to get this b1. How it works...

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