I sent videos of myself walking, talking and of the pull test to Dr Costantini today. I was not sure if I had improved or not in the month that I have been taking 1200mg in the morning and 900mg in the afternoon ( I weigh 52kg, he advised me to take 2g xday but I can only get 300mg tablets). Comparing the videos with the ones from a month ago, I felt half hopeful that I do look a bit better. And Dr C responded within an hour or two. He thinks it is going well. He advises me to continue and come back to him with more videos in a month's time.
I would like to post on the thread where people are recording their experiences with the thiamine protocol but I don't know how to do that. Perhaps some kind person could direct me?
I wish I knew how to thank him and Marco. I begin to feel really hopeful.
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Celtis
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I have been on 1gm of 100 mgm B1 =10 tablets . They were the only ones locally I could source. Early days though as has only been 3 days. I weigh 54 kg. Wonder why you are on much more?
Sent Video only of walking but advised to take one of writing, and talking for future reference. .....his or mine or both.?
I also take numerous other drugs some relating to other disorders giving me a handful to get down. I can do it without any swallowing difficulties but did ask him in a second email if it was ok to continue them which include Parkinsons, Thyroid, Heart, B3 and B12.
He hasn’t replied.
Like you I have trouble navigating the systems. I can easily lose data...this morning, somehow, deleted my 4000 photos....what on earth did I do.
Managed to get them back but again ....how. With all my jumping around (Dyskenesia) my fingers aren’t easily controlled and undo all I have done. I digress I know but it’s just more of what this disease has control over.
I’m yet to be convinced really, that Dr C will be able to help. Sometimes optimistic other times pessimistic and can be contradictory. In other words I don’t know who I am or how to deal with myself.
Yesterday for the first time and hopefully the last time, getting up slowly from the table, with good friends and family there, my bladder gave way and I couldn’t control it. We were all momentarily quiet while I gave way to tears and dealt with it . Thank goodness I wasn’t at a restaurant. Must go as the tears are welling as I write.
Perseverance is the name of B1 therapy protocol. Please have hope and trust Dr. C.
My husband started B1 injections not quite 3 weeks ago. When he got the first shot, he told me "I am back to normal!" After the first injection, although I can witness improvements (his micrographia gone and back to normal writing), his bradykinesia is very, very improved, his executive function also improved, I am expecting more improvements, but especially progression halt. His bladder movements are also improved (from every 25-30 min trips to the bathroom to every one and a half hour).
I’m so happy the B1 is working for you guys . I started the regimen and tried for 3 weeks , 500mg pills. Unfortunately my symptoms went off the chain and I could barely walk. I was doing pretty well but was hoping for help with fatigue. I’m all for alternative things to add but this one just wasn’t the miracle for me. 😔
Maybe you could try to ask Dr A. COSTANTINI, with a short description of yourself (age, gender, fitness, weight), your present medication, your symptoms and your experience with thiamine hcl.
Thank you so much for your encouragement. I am a female ultra runner at 98 lbs . I do currently take 6 25/100 cd/ld, azilect and Comtan . I receive Botox injections in my left foot and leg for my dystonia . I continue to run but was hoping for something for the overwhelming fatigue . Noticed I was having issues the first week but kept pushing through but this past weekend was it for me when I could barely walk . I’m encouraged for the people who have relief . That’s wonderful.
Are you experimenting on your own? Did you get in touch with Dr. Costantini? He will guide you on the right dosage, what works for you.
I emailed the doc with my husband's (PwP) medical history and a video of him talking, walking and the pull test. Dr. C. prescribed two injections weekly, and it's been working so far.
Dr Constantini has sent his Proticol recommendations of 1 gm. Vit B1.
I added the rest after trying to navigate everything sent to this Forum.
It is telling me that ‘a little knowledge could be worse than no knowledge at all’ but I’m inquisive and compulsive and I know I’ll continue to be involved.
With this Forum I find I’ve responded to someone else mistakenly at times as queries / responses pop in out of sequence. Maybe it’s me out of sequence too.
However from all this sent over the last couple of hours have gleaned I could be overdosing in Vit. B1. Funny how one can have, like me, a change and not be aware. I’m having difficulty now, with walking.....very weak legs needing support but did I think seriously on why it is so, no...until just now, as I write. Actually have difficulty too with what I did yesterday. I write up my Diary as a rule but as I’m on holidays out of my comfort zone, I’m not registering anything.
Shall, starting today, cut back the B1. Somewhere, though, it was said, B1 removes any excess the body doesn’t need. So if I don’t need 1gm it will reorganise the dose accordingly........yes/no. I don’t know.
I think we all feel for you. This is an awful disease.
I am like you, I have Lupus, psoriatic arthritis, psoriasis, all in some sort of remission since I changed to a keto diet. I also have connective tissue disease which makes it hard to swallow and twists my fingers and toes into weird shapes. I was booked for a knee replacement and couldn't have it because my heart played up. I am battling to recover from an aortic valve replacement and a triple bypass. I walk with a zimmer frame because I am forbidden to have the knee replacement until December.
I am telling you all that because I want to tell you that, of all my problems, the worst was constant diarrhea which has lasted at least 30 years. In the last 10 years I have found myself dealing with fecal incontinence more and more. I can't count the number of times I was cleaning myself in floods of tears, wishing I could just die.
And I have found the solution. I have no diarrhea now. I have normal bowel movements, no more tons of immodium to try and control everything.
Soon after I began taking LDN - low dose Naltrexone - the diarrhea began to go off and now, after 30 years of suffering, I am completely clear. I know it was LDN because when I ran out of LDN the diarrhea came back within a day. The same when I had to give it up for the heart op.
I can't say if LDN would help you but I have read that it has worked for some people. It is not expensive and it has changed my life so profoundly that I wish I could tell everyone about it.
If you google LDN and LDN Science you will find doctors and compounding chemists in your country who can supply you.
Celtis, hello again...I have googled LDN and like what it says.
I would love to hear from others, their opinion too.
It’s available readily here. Maybe it could be the answer to having a decent nights sleep as well, just to round off a bundle of ‘hangers on’ my back and see them fall off.
There are some people who say their Parkinsons has been put back with LDN. I can't say for myself,but if you look on youtube and vimeo you might find them.Best of luck.I would love to know how it goes.
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