copy "Try the B1 therapy before going on any prescription meds - it worked for me - thanks to Roy who kept my hopes up by posting his stories and the facts and evidence from the wonderful Italian consultant Dr constantini? I am back to completely symptom free health. It took 3 months with some rather nasty bowel problems but now I have reduced my B1 to just a low dose. I am so grateful to Roy for all his time and effort to help others and of course the wonderful Italian Dr constantini... 😊" GARY HARRISON,...in my facebook group:
Roy Propsner I take 1 x500 b1 and vit 12 spray under the toung spray twice a week. I feel wonderful.👍
• in reply to
Roy,
So you are no longer taking 4 grams a day, but rather just one gram per day? If that is correct, how long have you been on one gram/day?
Art
• in reply to
That is Gary saying 1g a day. I still take 4g daily. Just last month I asked Doc. Costantini if I could lower my dose and he told me to keep taking 4g daily.
You (RoyProp) are taking 4 grams daily. Can I assume 2 grams at breakfast and 2 grams at lunch? No need to answer if I am correct.
Gary is taking 500mg at breakfast and 500mg at lunch......is what I deduce.
I do NOT have PD but after my son's death of PSP (May 4, 2017) I developed balance issues, etc. I started with 100mg on Aug 12th and have worked my way up to 400mg 2x daily.
I plan next week to increase to 500mg 2x daily. It has helped me considerably.
I did this slowly as I too had bowel "near" accidents when I started. Figured, like all things, my body likes me to take things slowly.
Just curious here. I started on HCL therapy about 2 weeks ago, working with Dr. C. My dose is also 1 gram, but I take it all at once at breakfast. Is there an advantage for splitting the dose to have with two meals?
Hello----I am interested in your B1 therapy. I am taking 2 G twice a day (breakfast and lunch)and plan to continue until it is obvious that it isn't helping or other problems appear. What is your doseage and what changes have you seen since beginning the B1 therapy? I know we all are different but how long before you saw improvement?
I am a 72 year old retired judge diagnosed with PD 16 years ago.
Feel free to ask me anything about my situation as we are all in this battle together..
Improvement is likely missed if one is not observant. That is why we take video record and depend on outside observers. Generally over 4 months. First week, no more constipation. One year No more micrographia.
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Thanks for the data Roy. I can see why splitting things up would help. Although peak is at 4 hours, I guess there is a buffer of to keep things going through in the check for quite a while. Thanks again for the literature.
Hi Roy, A short while ago i wrote to Dr C who the told me the ‘correct’ dosage which seemed to have worked but unfortunately recently my husband seemed to be worse. How does one continue with this? does this mean its not quite the right dosage.. Hes not able to stand and seemed to have trouble even buttoning. I am really worried this will get worse as time goes by. Hes taking azilect and now the neuro recommends ropinirole. I’m really worried and he’s seems to have declined in health.Hes also more tired.
Dose Adjustment letter is in Files, Facebook group.
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...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.I
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
My husband started with 3 g per day but was asked to half it. But as he does it take any levopoda , we are not sure if there were positive results or not. All I can say he seems to be declining . He tells me he has fallen twice in his butt recently and he s not able to stand straight as he doesn’t seem tobe able to stand straight.
As we haves the dosage , are u saying we stopped again for like 5 days and starts by having the dosage increased again
Could you tell how you were at your worst before? Eg could you walk , did u suffer from rigid ness , etc. How Long was it when you saw improvement. Also huw long gave you been on the b1 regime? My husband does not take anything except azilect . Should he start taking selegine or sinemet?
Carbidopa Levodopa. My hair was affected. Stiff. B1 two years. Four months.
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...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.I
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
i can't find the adjustment in the facebook. Now that my husband has been on 1.5g and it doesnt work, what should i do.? increase it to 2g once a day?I really have no idea how this can be adjusted. Dr C recommended some levopoda but this has not been recommended by his neuro yet.
Facebook group under FILES link.
I am only a patient myself. Not a prescribing doctor.
Oral capsules, 500mg each
Four capsules and carbidopa levodopa at breakfast.
Four capsules and carbidopa levodopa at late afternoon.
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