I have Corticobasal diagnosed in 2015. I continued to work until 2018 my right side (called Sherlock) who does as he wishes is affected. I take 25mg/100mg carbidopa /levodopa CR. I have been adding 200mg of B1 in the last 18months. My family noticed a great improvement in my limited speech and movement. I have no problem cognitively following conversations and adding a few words when they choose to come and engage. I have a gait, freezing and jerks which are not constant. Covid and having scaffolding for the last 2 years blocking the rails I use to exit the house has had a big impact on my mobility.
Used to do lots of activities concerts hydro pool and managed to use my left hand to do lots, but I am totally dependent on support for everything now.
I have struggled with swallowing the tablets in-fact always had problems with any tablet
Need some input I have been put on Madopar 50mg/12,5 dispersible but not sure how this works and can I still take the b1. can I just start taking it or do I need a day break from my old meds then start. Worried that I might get serious side effects .
I find the info on the Parkinsons very useful it has given me knowledge in order to question the neurologist total lack of interest. It’s taken this long for an appointment to sorry a movement disorder specialist. Thank you all
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Toran
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High-Dose Thiamine (HDT) therapy, administered at the right custom-corrected dose, improves most symptoms in Parkinson’s Disease, as well as fatigue and disorder-specific symptoms in a number of other neurodegenerative (and related auto-immune and/or inflammatory) disorders.
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Hello, please… Read
Basic (B) - (1) 1nstructions. B1 in the form of thiamine hcl is required for HDT (high dose thiamine) therapy.
Regarding thiamine hcl, it is not a cure. It is at its best supporting carbidopa levodopa. Solgar tablets are choke hazard. Find capsules as they are easy swallow.
Doctor Costantini directed:
Early or mild symptoms - 2 grams daily.
Moderate symptoms - 4 grams daily.
Severe symptoms - 6 grams daily.
Divide into two equal doses. Take first dose at breakfast. Take second before lunch.
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Before starting with full dose take a small amount and watch for any allergic reaction.
Continue to the GUIDE - click on See All .
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Required Reading Book List for Advocates of their own health.
Number One:
“The New Parkinson’s Disease Treatment Book” Second Edition, 2015
Thank you Roy for your response and the information.
I have ordered the book and have made a list of what I take.
Since diagnose (2015) I have only had 1x 2 times a day of 25mg/100mg carbidopa /levodopa CR.
Have now changed to Madopar 1x2 times a day 50mg/12.5 dispersible. As this is a lower dose, I will keep track of how I get on. I started to add the b1 after seeing it on the forum as I was becoming very stiff and struggling with words. We noticed a difference but I am unsure when I struggle if it is because I am on a low dose of Levodopa or just the condition moving on. The Neurologist did not say anything or for how long to take it. He said a lower dose of Madopar was better.
These are the supplements I take
Will change my vitamin B to Vitamin b1 hcl will now try 200mg x2 a day and build up keeping a record.
Magnesium citrate
Liposomal vit c
Pure black cumin seed oil
Raw hemp paste works better than paracetamol we find.
I also try to exercise as best I can as every day is a different surprise, as well as having complimentary health treatments to try to keep whats left of my mobility going.
Thank you park_bear as the only prescriptive medication I take is the Madopar I should have said ‘with the rest of the complementary medication I take’. I was unsure if they would affect the Madopar.
We have for the last two years been following the site as it has been the most important informative forum, and we have been able to try some of the suggestions. A very big thank you to you all.
Our dear friend has this condition also and his wife has tried nearly everything, but she didn’t try HDT. Too many other things she was trying at the time and didn’t want the HDT to interfere with the results.
If your family noticed improvements with 200mg of B1, this seems like it should be explored further.
I don’t have anything to suggest other than I wouldn’t be happy with a neurologist that wasn’t interested in my life. Your neurologist’s lack of interest could possibly be more lack of knowledge and doesn’t know what to do.
Thank you Jenny it is from this forum that I learnt of a neuro ophthalmologist and got my doctor to refer me to one 18 months ago . I was diagnosed as severely sighted/blind. When we told my neurologist of 8 years he looked rather sheepish.
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