Thiamine Research Results by WEAREPARKY

[AmyLindy]

weareparky.wordpress.com/20...

[MBAnderson]

Amy,

Excellent find. Thank you, thank you. Everything a PWP could want to know about B-1.

It sure would be nice if this website would allow a read-only page, otherwise most of the people who come on the site after tomorrow may not ever find this.

Noteworthy are the 2 figures of 50% in one survey and 60+% in another survey experience beneficial relief.

Also, noteworthy is that some other apparently Parkinson organizations and PD healthcare professionals are dismissive and I've never understood why, but I've come to believe it's the snob factor. If you're a Dr. and/or a PhD scientist, you can't be bothered with a lowly, common, dime a dozen, run-of-the-mill supplement, much less a simple vitamin, much less B-1. It's just unworthy.

Marc

[MBAnderson in reply to MBAnderson]

If only it worked for me.

[WinnieThePoo in reply to MBAnderson]

It was interesting. Also a bit internally conflicting. (The report concluded the supplementation was beneficial because PWP levels were measurably low, whereas in an obiter dicta regarding dosage Dr C stated it worked regardless)

Doctors are busy and overwhelmed with information, and need to select proven effective solutions, especially in your litigious country.

30 days, no placebo control, no qualitative assessment of the peer reviews...

I'm not dismissing B1. I remain interested. But this is still anecdotal

[Pa-zzi69 in reply to WinnieThePoo]

... and I've just learned from a very well informed PwP that Parkinson's patients stand amongst the highest in terms of PLACEBO responsiveness!...

N.B. Mid-March I started Dr C's Thiamine protocol

[MBAnderson in reply to WinnieThePoo]

I know doctors are busy and I know their prescriptions have to be based on hard, scientific data because we don't want them dispensing potions for breast cancer, but too many of them won't listen to their patients and/or are contemptuous of supplements and nutrition. I do have a lot of respect for doctors and have had good luck with doctors my whole life. All of them have listened and been supportive.

Probably it's a good thing that some focus on pharmaceuticals while others focus on nutrition. If a person doesn't like your doctor's attitude about nutrition, they should take responsibility for finding a naturopathic.

[kievian in reply to MBAnderson]

I agree with everything you say. I am diagnosed with MSA since 2010 and so am reluctant to invest money in a treatment without any convincing scientific rationale and whose reported success relies on the opinions of PwP who are administering their own treatment.

[MBAnderson in reply to kievian]

kievian,

If your reluctance is too rigid, you could be doing yourself a big disservice and the thiamine story is a good example. I give it 50-50 that there will ever be data on B-1.

I am at the point where I am fairly uninterested in hard, scientific data because waiting for data re Parkinson's therapies is like waiting for Godot.

[sharoncrayn in reply to MBAnderson]

"If you're a Dr. and/or a PhD scientist, you can't be bothered with a lowly, common, dime a dozen, run-of-the-mill supplement, much less a simple vitamin, much less B-1. It's just unworthy."

10/14/2020---Hardly the case. Voluminous research, animal and clinical trials, peer reviewed articles have been done on supplements by Doctor and Ph.d types, not supplement companies or foundations. Sure, most doctors and Ph.d types are drug, radiation, and surgical oriented for a reason. The reason is why you are on drugs and have had brain surgery. Simple logic akin to 4th grade math.

[MBAnderson in reply to sharoncrayn]

Ha. Since you are reading old stuff, have you read, Waiting for Godot?

I LUV brain surgery.

[Despe]

Thank you, Amy! I always wondered if PwP on HDT need a blood test to determine if and how many mgs of B1 they need.

[olehoss]

Amy, so happy you found this Site! Constance (CONS10s) led the way, and Glen followed shortly there after. Great information, and feedback, and helpful - just like the info you provided! Thanks, and enjoy....Glen aka OleHoss

[Parkie-]

Thank you for posting.

I don't know if it's just me, but I had never seen this warning before about B1 and tumor cells:

"To maintain the level B1 near the maximum levels for prolonged periods can cause an acceleration of the biorhythms and therefore produce a potential impulse capable of fostering the growth of preexisting breeding grounds of tumor cells"

[PDGal4]

Interesting. Thanks for posting. I am curious. The article states:

Hence, to ascertain if the level of Thiamine (B1) is normal, it will suffice to do a specific blood test that would provide the actual value of Thiamine, whose acceptable levels range from 2-5 micrograms for deciliter.

I had my B1 tested in February of this year. Results are Vitamin B1 Blood103 nmol/L. Standard range is given as 78 - 185 nmol/L.

Does anyone know how micrograms per deciliter compares to nanamoles per liter?

[aspergerian13]

How many neurologists remember the Krebs cycle? That several components are thiamine dependent? That many and perhaps most such processes occur within mitochondria, which (in general) are gimpy in PD?