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Vit B

Vit B

Is anyone taking reg Parkinson’s meds and Vit B1 ? I’m only taking amino acids with B1. Just wondering how it’s working for you?

A MyParkinsonsTeam Member said:

I BUY B1 FROM vITACOST.COM/ VERY REASONABLE. I TAKE3 CAPSULES IN THR AM and 3 in the ajternoon, I have been using it fora week and I' already found it helps me move in and out of bed as well
as turning over, keep me posted on how it works for you,

posted over 2 years ago
A MyParkinsonsTeam Member said:

One study on thiamin and PD has been reported. Positive results were noted but placebo effect could not be eliminated.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48...
Article suggests that, in some subsets of people with PD, thiamin may alter effect of alpha synuclein
https://www.michaeljfox.org/mobile/news-detail....
Excess thiamin would be eliminated via urine, since thiamin is water soluble.
Nutritional supplements are not regulated and one cannot be assured of their content. All nutrients act synergistically and there may well be nutrients in foods that we do not know much about. My experience as a registered dietitian nutritionist is that, unless deficiency of a particular nutrient is found, supplementation may not be warranted. There has been very little research completed re: thiamin and amino acid supplementation in PD. More research is warranted. In the meantime, note that there is a strong placebo effect in PwP; make sure your MDS is aware of your supplementation. Is the supplementation with thiamin and amino acids making a difference in managing your symptoms, Jay bird?

posted over 2 years ago
A MyParkinsonsTeam Member said:

jay bird I am on Senimet and b-12 shots and cortisone shots. But I have Chronic Epstein Barr and Fibromyalgia along with Parkinson’s now.

posted over 2 years ago
A MyParkinsonsTeam Member said:

jaybird - That’s the article I referenced in my previous response. Not sure that less Sinemet =better long term prognosis but less Sinemet may result in fewer side effects like dyskinesia. I am very sensitive to Sinemet (only took 2 pills per day but had dyskinesia). Since DBS in 2016, off Sinemet entirely. No dyskinesia and doing well.
I think management of PD will be multifaceted with gene therapy, meds that attack alpha synuclein aggregation, carbidopa levodopa, ? Stem cell therapy, nutrition & exercise, other therapies. Because each of us is different and our PD is different, therapy will likely be individualized. Lots of great research out there!
Marty

posted over 2 years ago
A MyParkinsonsTeam Member said:

Marti, you may be interested in Dr Costantini’s work on Vit B1. He’s been using it w success in Italy for years. He’s gotten quite a following with his research.

posted over 2 years ago
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