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Parkinson's Movement

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Parkinsonism

RoyProp
RoyProp

Parkinsonism

From comment on Facebook group Parkinson’s thiamine hcl, January 3, 2019.

Member commenting is Margie Pyle.

“I started b1 Thiamine hcl the middle to end of November. I’m taking 2 500mg capsules with breakfast and again 2 with lunch. I must say I don’t have PD but do have parkinsonism. I don’t have tremors but have so many other symptoms of PD. My constipation is gone and I’m starting to notice smells. On New Year’s Eve I slept on my stomach for the first time in at least 4 years. I wasn’t able to roll over during those four years. Now I can. My son was telling me some riddles last weekend. I got all but one correct. One month ago I would not have been able to answer them. I was having Chorea movements in my right foot. I am taking Agrezza for it but I feel it has improved since starting HDT. Unfortunately I’m still fatigued everyday. I’m taking Provigil for the fatigue. I’m taking it off label. It’s helping some but not as much as I would like. I don’t think I’ve been on HDT long enough to help the fatigue. I use a walker. I think my walking has improved also. The brain fog has definitely cleared some. Today I noticed my eyesight seemed clearer. I’m not actually looking for specific improvements. I’m just suddenly surprised when I realize I’m doing something better or I can do something again. I am just amazed at the quick improvements I’m seeing. Symptoms for me started in 2013 and I was diagnosed in 2014 with the parkinsonism. I hope this helps.”

22 Replies
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Help spread the good news. Copy and paste facebook group across the World Wide Web:

"parkinson's thiamine hcl"

facebook.com/groups/2322600...

Parkinson's Relief, Questions and Answers

You have 203 followers. Wow that is truly sad. People do not take time to read facts. Do a pull test in 2 years, and we'll see how you have progressed or not. I predict that high dose thiamine is not going to stop your disease progression, and the fact that this forum is giving people hope that thiamine is a cure is pure tragedy especially when there are real therapies that combined can make a real difference in progression of Parkinson's. Roy, honestly truly I believe you are hurting people with Parkinson's with your posts because you are so focused on one vitamin that helps only a small minority of patients, and I wish you would stop pushing thiamine as a cure-all.

I urge folks to read this gentleman's profile. You need to click on the link and then the link that says Read more under his profile: healthunlocked.com/user/mba...

Astra7
Astra7 in reply to sunvox

I think when something is working for you it seems quite frustrating if others won’t try it!

It certainly does seem to be helping some people and it’s probably relatively harmless. Personally I’m not a convert though I have found a regular dose -200 mg- seems to eliminate my very mild dystonia.

Motherfather
Motherfather in reply to sunvox

well at least hes trying his best, hes not making money out of it, he has pd if it works for some thats good if not for others thats ok, as long as you try you have done your best you cant ask for any better than that,any advice is good advice when your in pain you will try most things to get rid of the pain.regards my thinking on the subject.

to all my friends here in healthunlocked. this is the words i wrote on a wall in my home its written in calligraphy the wall is 3 mts by 2 mts and was written a very long time ago in 1927 by an american man.i read it all the time.regards john,hope you like it,

youtu.be/3bUTcy6w2Rw

park_bear
park_bear in reply to sunvox

High-dose thiamine is definitely helping me. Nonetheless, there is no reason for it to keep me or anybody else from taking advantage of other ideas.

What are these other treatments you are referring to?

jimcaster
jimcaster in reply to sunvox

Joe, I don't think any (or many) of us see B1 as a cure, nor are we using it exclusively. I am grateful to Roy for introducing me to B1, to you for introducing me to Nicotinamide Riboside and other supplements, and to MB Anderson and many others who share ideas and information. For most of us taking B1, it's just one of many weapons in our arsenal. We're all trying to learn and be helpful, including Roy, to whom I remain grateful. I have no idea how his pull test will be in 2 years, but I deeply hope it's the same or better than today...and I'm sure not willing to bet against it.

ParlePark
ParlePark in reply to jimcaster

Very well said and agree 💯 %.

Despe
Despe in reply to sunvox

Roy has 203 followers, but Dr. C. has thousands. :) It's not Roy who invented Thiamine therapy but Dr. C. with his team. What is the profit for big pharma having double blind trials? ?????????????????

My husband is taking TRU NIAGEN, but he experienced improvements after B1 injections. Please use a more polite writing style even for your negative comments.

RoyProp
RoyProp in reply to Despe

Readers, join my facebook group dedicated to Doctor Costantini and his work:

"parkinson's thiamine hcl"

facebook.com/groups/2322600...

Parkinson's Relief, Questions and Answers

Guide: 1. Read page, About, open links., 2. On Files page, open B1 FAQ document. 3. On Files page, download First Appointment document , answer and submit.

I was diagnosed in 2012. In six years the Parkinson's symptoms became disabling. All this time I tried many of the standard Parkinson meds trying to find the right fit. I researched on Google for alternatives. Then (2017) I found B1 and Doc Costantini. He is a wonderful doctor and human being (charitable). Read the results I experienced by visiting my HU profile page.

IF you cannot or do not want to travel to Italy, he will help you via internet without charge. He does not sell medicine, book, vitamin or supplements or any product.

Help spread the good news. Copy and paste this facebook group across the World Wide Web/Social Media.

Despe
Despe in reply to RoyProp

Amen to all, Roy! I never got a FB account or any other social media account for security reasons. I receive a lot of junk email as is, didn't want to add more scam. My husband's career was Cyber Security. . .we stayed away from social media.

Kattripp
Kattripp in reply to sunvox

We completely disagree with you, Sunvox. My husband has dramatically improved with HDT...all for the cost of 4 cents a day!

The correct dosage is important, and a bit of trial and error but Dr Costantini will help with that on-line, for free, and Thiamine HCL is available on-line.

I have contacted MJFF as we raised $14K for the foundation a few years ago but no reply to my letter other then the standard “thanks, we’ll get back to you”.

Is it because no $$$ for drug companies?

No $$$$$ for DBS?

Yes, research does need to be done and that takes money, interest and time.

Frankly, we can’t afford to wait.

LindaP50
LindaP50 in reply to Kattripp

This is the first time I am hearing of HDT. Only 4 cents a day? Where does one purchase HDT and what are the benefits? Anyone?

RoyProp
RoyProp in reply to LindaP50

HDT = high dose thiamine hcl.

Diagnosed 2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

LindaP50
LindaP50 in reply to RoyProp

Thanks RoyProp I'll check out Dr. Constatini strategy

I've got no argument just experimental testimony to the fact that I have tremor dominant PD on my right side, tremor started on Nov 2014. The following year symptoms progressed by lots of pain and bradykinesea (slow movement). I was diagnosed by way of dat-scan on Nov 2017. By that time I had cramps at night, curling toes, cob web feeling on face, cervical radiculopathy, numbness and electricity feeling on my left leg, limp on right leg and the icing on the cake DYSKINESIA. I was prescribed sinemet, amantadine and gabapentin which I tried and experienced no real relief. But then in a desperate search for some relief while scouring the internet I found this forum and the first few people which I thought were very serious about their fight against this disease were silvertrov (who I thought was ahead of our time but now am more familiar with his shares) and my very dear friend Royprop (B1 teacher🤗) among others, but just to make the point. I am currently using MP 100% ldopa for one year and 4 grams of B1 a day for the past 5 months. Only remaining symptoms are tremor on right arm and a slight limp on right leg at off times. B1 has reversed my symptoms (this is my personal experience). With all due respect I recall sunvox stating that he DOES NOT HAVE PD.

good to see +ve improvement

What I think of you Roy is that you are a brave person, one of the first here on HU to try not only HDT, but also other very innovative things and above all to share with others your own experience with great generosity. Despite the malevolent invalidations your intention is to help people without ever withdrawing and this gives the measure of your greatness. Your modus operandi is "all or nothing" and is appreciated. Thanks Roy for your help from me and on behalf of everyone who will benefit from your experiences. Smart and brave people like you make the difference in a forum like HU, but above all in life. With respect and friendship. Gio

I was diagnosed w/secondary Parkinsonism in 2008 and had a Brainstem Stroke in 2007. Paralysis on right side. What I've noticed Slight tremors in the evening, loss of strength, slow gait, nap in the middle of the day, stiff neck and back causing me to walk hunched over and of late, lack of interest. Do you think taking Thiamine hcl, would help me! I currently take numerous Herbals, and Carbidopa/Levodopa 100/25 twice daily. Not sure if it helps or not? My Neurologist told me since I have Secondary Parkinsonism what medication work for Parkinson's don't always work for Parkinsonism!

Axel

RoyProp
RoyProp in reply to Axeltoot

Why not?

Hidden
Hidden in reply to Axeltoot

Axeltoot,

Your neurologist is correct, not all PD meds work for Parkinsonism, but not all PD meds work for PD in everyone either. The only way to find out what works is to try it under your doctor's supervision and that includes thiamine. Dr Costantini, also a neurologist, has used it with some success in patients with Parkinsonism. Here is a link to the HDT FAQ page where Dr Costantini discusses this aspect of HDT / Vitamin B-1 in relation to Parkinsonism :

healthunlocked.com/parkinso...

If you want to read any more about HDT, just click on my icon and select from a short list of posts about HDT.

Good luck!

Art

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