Some Thiamine post have gone from report... - Cure Parkinson's

Cure Parkinson's

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Some Thiamine post have gone from reporting to promoting to outright prescribing.

Bailey_Texas profile image
28 Replies

This is what i am referring to.

RoyProp

15 hours ago

See my profile. Do your friend a great favor. Start him on high dose thiamin HCI

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Bailey_Texas profile image
Bailey_Texas
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28 Replies
Cons10s profile image
Cons10s

I second RoyProp on this one.

Power to the B1 People!

Bailey, let the people decide for themselves, we’re all adults here.

Cons10s profile image
Cons10s

By the way Bailey how was your day today? Mine started with a client meeting, then to the salon for a manicure and pedicure, now heading to a staff meeting. All without hesitation due to B1 Thiamine.

Wish my doctor or someone would have prescribed B1 therapy to me a couple of years ago.

nourilo profile image
nourilo in reply to Cons10s

Cons10s, How long have you had Parkinson’s?

Bridielena profile image
Bridielena in reply to nourilo

My question too. Me 13/14 years.

I feel length of condition must have some bearing on efficacy of B1. I could do everything Cons10 does for first 10 years. Now , not much. Trying B1 but I’m confused and sick of being sick to be bothered anymore. Have to buck up somehow.

Bailey_Texas profile image
Bailey_Texas in reply to Bridielena

Hello Bridielena

I do good after 13 years but i am one of the lucky ones. I do not have tremor and i can take a lot of Carbadopa levadopa. I was taking 3000 mg 2 days ago and now i am trying to cut back to 1800 mg a day. It is hard but i am starting to get some side effects. If i can't I will have to have DBS. Good luck with the B1.. If you read all of the paper by DR C at the end he says people who take C/L must continue to do so. Only newly Diagnosed take only B1.

Cons10s profile image
Cons10s in reply to Bridielena

Read Genius Foods by Max Lugavere. Learned how to better fuel the brain. Eliminated brain fog entirely for me.

Springfield78 profile image
Springfield78 in reply to Cons10s

Excellent book!

Bailey_Texas profile image
Bailey_Texas in reply to nourilo

13 years

Cons10s profile image
Cons10s in reply to nourilo

3.5 years from loss of fine motor skills. 10 years constipation. 20 years loss of smell. Truly a difficult question to answer. No meds.

Bailey_Texas profile image
Bailey_Texas in reply to Cons10s

i am 64 6ft 2 inchs tall 215 lbs

13 years ago

Constipation

Anxiety and depression

Loss of mental sharpness

Drooling

Insomnia and vivid dreams

Sweating and body aches

Vision problems and dizziness

Slowness of Movement

Rigid Muscles

Today using only Prescribed Meds from my doctor

I am symptom free at least 22 hours a day.

My day starts at 3 am and ends at 10 pm

I can run a mile

Dead lift 415 lbs.

Exercise 1 hour in morning 4 days a week

Last year bought 75 riding mowers repaired and sold 65

Take care of my house and 2 acres.

Help my son and daughter with their homes

Install 1500 sq ft of tile in my house.

Traveled to Europe 3 times in the last 6 years

Saw my daughter through Breast cancer 4 years ago.

Helped my grand daughter through A&M she will finish this fall

Take care of my crippled brother and his home

Give rides to my grand kids when needed.

Repair my cars myself.

Drive a 6 speed manual 2007 Corvette.

Installing a new ac on my son's rv this friday.

Nitro53 profile image
Nitro53

I've said it before, go away unless you have something positive to say.

Bailey_Texas profile image
Bailey_Texas in reply to Nitro53

Not likely

I have seen this type of stuff come and go. Unproven, anecdotal at best. We should report about anything we find or do that may help.

I hope every one takes it and they get cured.

ryanJames1 profile image
ryanJames1

I can only talk from personal experience and I am very appreciative of Roy and other s who are passionate about informing others about B1 and Mannitol I am much improved since starting both! Over 5 years on since first tremors and still med free

I understand different strokes for different folks but I can totally understand those trying to inform and help others

Thank you

PDConscience profile image
PDConscience

It DOES become a bit hyperbolic at times. Seems to happen every few months or so. One doesn't need to dig too deep into RoyProp's posts (and others) to find similar breathless evangelizing about the miracles of coconut/MCT oil... then mannitol... then thiamine... stay tuned for more :D

Bailey_Texas profile image
Bailey_Texas in reply to PDConscience

The term methylation cycle is a term used by chiropractors and holistic healers and is not a medical term used by Doctors as far as i have found.

If you do any research and prove me wrong please post it here.

Thanks Bailey

JerMan22 profile image
JerMan22 in reply to Bailey_Texas

This guy is studying for a master's degree in nutrition (begins his doctorate next year), and generally knows his stuff: youtu.be/3k96NQ0N4cQ

ryanJames1 profile image
ryanJames1 in reply to PDConscience

I have not seen any evidence of exaggerating experiences I find it sad that you have so little hope

M_rosew profile image
M_rosew in reply to PDConscience

(... and Turmeric... )

4000Nights profile image
4000Nights

Really?! If you encountered someone who has advanced PD and feels hopeless, you wouldn't 'do them a favor' and suggest they look at the posts on thiamine and Mannitol, and try it. What do they have to lose?

i recently had a checkup with my neurologist and he said I looked great.."What are you doing that's different?" i told him about Mannitol. He said he was hearing that from several patients.

I also told him about large dose B1 although I am not taking it (yet) because my current regimen is working so well. He made notes on both, was appreciative of the information and said he was going to look into both... he was always interested in new 'treatments' his 'more progressed' patients could try to supplement the meds he was prescribing.

Don_oregon_duck profile image
Don_oregon_duck in reply to 4000Nights

To know 1, you have to B1.

marion11005 profile image
marion11005 in reply to Don_oregon_duck

LOL!

park_bear profile image
park_bear in reply to 4000Nights

That is one fabulous MD.

Springfield78 profile image
Springfield78

Roy, Kia, Gio and others have been of great help to me. I say thank you for their wisdom and positive approach to PD.

in reply to Springfield78

When first diagnosed I was stoic. Later as I read and learned my possible fate with Parkinson's, I cried. Afterwards I took on my positive approach and sought out methods that fight it. I find Park meds, necessary for many, are often doing as much harm as good. I was willing to try various Park meds. I am willing to try alternative, suplement, herbs. Why not, even aspirin is tree bark based.

Bailey_Texas profile image
Bailey_Texas in reply to

That is great keep trying and keep us informed on anything that works for you.

I think we have a responsibility here to not recommend products but only relate our experience with meds and all other things we use to help us through the day. If we push some people will use what ever we post. Not every one can make a informed decision. If you tell some one to try something and they do and they get hurt or die we share in the harm that comes to them.

Despe profile image
Despe

Bailey, we know you are a PRO-CONVENTIONAL medicine advocate. Let us decide what we prefer, CONVENTIONAL or NON-CONVENTIONAL.

PS. I have asked you before, is your son a medical doctor?

jujulini profile image
jujulini in reply to Despe

yes,despe, i agree. because, isnt it the same thing? if we only talk about conventional meds, etc, isnt that pushing an agenda? they can certainly hurt or kill us. if you dont hear both sides, you cant make an informed decision.

Bailey_Texas profile image
Bailey_Texas in reply to Despe

no i have no doctors in my family nor do i have any friends that are doctors

just know what works for me.

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