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Parkinson's Movement
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Does anyone else just take thiamine w/o medication , if so for how long and how effective is it?

I am newly diagnosed with early PD at age 48, I have not received medication yet but started taking Thiamine and it has really minimized any symptoms I have. Does anyone else just take thiamine w/o medication , if so for how long and how effective is it?

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What are your symptoms?

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Left finger tremor, leg pain, slight loss of mobility in left hand/foot, small writing

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Are you left handed?

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Yes lefty! : (

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Sounds like you’re one of a very few who caught it in time to be able to benefit from using HDT only. 👏🏻

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Yes, it is completely possible to get substantial relief with HDT alone if you are relatively newly diagnosed with modest symptoms. The really good news for those fortunate ones who catch it that early is that HDT may be all you ever need to keep things as they are! A big congratulations to you!!!

Art

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Interested to know the dose that you take, also powder or tablet and brand? Thanks 👍

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I take this twice a day, vitacost.com/vitacost-vitam...

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I’m glad to see you have the correct b1 thiamine hcl. I don’t have PD but do have parkinsonism. Started the Thiamine hcl in late November. I don’t have tremors but have Chorea movements in my right foot. It has slowed way down and stops at times. I do take Agrezza for the movement which helped but adding thiamine helped even more. My slow walking has improved, but still slow. My arm swing is back. The things that are gone are constipation, toe cramping, incontinence, brain fog, cognitions improved and I can now rollover in bed. There may be others but this is what I remember off the top of my head. I still have severe fatigue. I haven’t found a solution to that yet. I’ve tried modofinil (Provigil). It has the opposite effect. It puts me to sleep. I’ve had to stop it. My doctor has put me on b12 sublingual. I’ve only been on it two days. I was planning to email Doc C but he’s been unavailable since I’ve got my medical records and a couple of videos ready to send to him. I will wait until he’s back in the office. In the meantime I will keep asking people. I’m glad to hear your positive reaction to b1 Thiamine hcl. Continued good luck. Don’t forget this is a lifelong treatment not a cure.

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Hi! I'm curious about the distinction between PD and Parkinsonism. How was that distinction made and what is the practical difference in the long term? I was in such shock when I was diagnosed that I don't remember if the doctor said "Parkinson's disease" or "Parkinsonism", but I have never looked into the differences. I'll do some Google research now. 😊

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The best way I know to describe the difference is this: Parkinsonism is a syndrome. PD is an actual disease with expected symptoms and progression. Parkinsonism is unpredictable symptoms and outcomes. All my symptoms are the same as PwP except I don’t have tremors. I have an unknown future. It is progressive. I had a DaTScan which proved inconclusive for PD. With tremors and other symptoms that respond to

Carbidopa/Levodopa it a safe bet it is PD.

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Your symptoms seem similar to mine. I'm also familiar with Multiple System Atrophy and other Parkinson's disorders which are sometimes called "Parkinsonism." They tend to progress more quickly than "regular" Parkinson's Disease, if there is such a thing.

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I was diagnosed last May and, thanks to finding this site, was on high dose thiamine three weeks later. I do not take any medication, although I do take a variety of supplements and vitamins recommended by my chiropractor. I can honestly say my symptoms are better now than when I was diagnosed. The only symptom which bothers me is micrographia, but even that is hit and miss. I sure hope Art (Easilly) is right about never needing medication...

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Art is always right. Always.

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Art and Roy Propsner are both very helpful and always correct so far. Are you familiar with Roy’s Facebook group?It is excellent and focuses on the HDT protocol. For those interested it is parkinsons thiamine hcl, a Facebook group based in the USA 🇺🇸. Others do join from other countries.

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Yes I belong to it, thanks!!!

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PD 10 plus yrs....on since March, helps with almost everything that hit me, never have had reg meds. ....went from 4 gms to 750 mg 2x day...on some other supplements too.

On Solgar Thiamine HCL 750 MG 2X DAY, also 1 tblsp Mannitol,

Solaray Mucuna 333mg ( 15 % l dopa), Banyan Botanicals MP ( 3 to 7 % l dopa)easily chewed for emergencies

NOW Women's B COMPLEX every 3 days, 200 mg co q10 every other day,

Terry Naturally Cumin, try for every day, either Life Extension Neuro

Magnesium, or Magnesium Asporotate 3 times weekly,

Solaray D3 & 2 10K 2-3X WEEK,

3-4 droppers full of B 12 placed under the tongue, daily

Fiestin containing foods wheat germ, and parsley 1 time a day.

The only supplements I may take within 30-60 min of B1 are D 3,2, B12, MAG

I need to add that I spent the last few yrs battling intense fatigue, right hand tremor, gait problem, right arm/shoulder ridgetity, right fingers mobility. When on everything all is 75 % improved except rt arm swing, and finger mobility which I'd give a 25 % improvement.

I TRY to space taking everything by hours and days as taking everything every day was causing intense fatigue. I give B1 A WIDE BERTH.

Apparently I react very quickly to B1, and seem to need it on a daily basis. I notice a big difference after stopping for a day.

A note.....I have not, but still intend to contact Dr C to appraise him of my situation.

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10 yrs with no meds ! thats encouraging , what other supplements have you been taking if you don't mind me asking?

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Hi ! Please see my just finished edited response above.

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Wow, that's amazing - so happy for you Kerrington

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Hi, I just added to that post.

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That’s great results with no meds, do you eat a special diet ? Thanks

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I was eating healthy an organic semi vegetarian ( fish) diet for many years, but added chicken & turkey the past year to see if it wd help with fatigue. It hasn't. I'm still on all of the above however.

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Good diet, what does help fatigue ? I’ve had that too , more iron maybe??

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It's not a good idea to take iron unless a blood test clearly shows a deficiency.

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Thanks good to know!!😊

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Juliegrace is right. I've read a lot about iron. Supplements can be dangerous, and tricky. I use cooked/uncooked spinach and add lemon juice. They say to eat your iron and take it with c for absorption.

So far the only things helping me are B1, B12, a good sleep, HYDRATION, and walking.

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Great advice!! Thank you !

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Are You working with Dr Constantini or going it alone? As asked previously I would also be interested in your thiamine dose and brand.

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2x a day, but I know others take larger doses, healthunlocked.com/api/redi...

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And I am doing it on my own

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join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600...

Parkinson's Relief, Questions and Answers

Guide:

1. Read page, About, open links.,

2. On Files page, open B1 FAQ document.

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Diagnosed at 59 years old 9 months ago, taking no meds but 1.5g Solgar B1, Vitamin D, Co-oxy 10, magnesium & turmeric. Slight left tremor gone & left hand no-longer held as a claw. Still have stiffness & slowness in left hand so had to give up playing sax but have taken up trombone. Other than that I tried mannitol (couldn't live with the gas) & cbd oil (no difference for me). Considering photobiomodulation (near infrared therapy) & some exercise & diet changes. Just keeping on fighting one day at a time

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I think there is a non gas form of mannitol. You may want to reconsider it since the reports are very encouraging.

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Hi Kerrington. I can’t find gas free Mannitol. Have you a link for it please

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The only non-gassy mannitol I have seen is a product called Syncolein. It is basically just mannitol combined with alpha galactosidase. Alpha galactosidase (AG)

is the active component in the over the counter product Beano which is to help effectively alleviate gas. You can buy the syncolein product, but it is cheaper to take the alpha galactosidase on its own. The house brand from Walmart is cheaper than Beano and has more AG.

This is Syncolein:

syncolein.com/

This is Beano :

amazon.com/Beano-Tablets-Ca...

This is the Walmart house brand :

walmart.com/ip/Equate-Gas-R...

Art

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Hi , See Easilly' info below !

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Thanks for your posting! I too am a newly diagnosed, 54 years old, with minor tremors in my non-dominant hand and one leg, researching alternative treatments. I haven’t started any treatment yet. This thiamine approach is encouraging. I brought it up with my doctor, but he seems a bit more traditional and seemed skeptical about it. Has anyone else encountered this? Do I go against my doctor’s advice?

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I personally chose to try this approach and have had success, haven't seen my doctor again to discuss

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By all means yes go against your docs advice. join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600...

Parkinson's Relief, Questions and Answers

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There are no pharmaceuticals which affect the underlying disease, that is, slow, stop, or reverse the progression. They only provide some relief from some symptoms a few hours at a time and often with disturbing side effects, so our first and most important decision is whether or not to take pharmaceuticals at the time of diagnosis or when our symptoms interfere with the quality of our life.

There is not consensus on this.

There are people who’ve been living with Parkinson’s for years who say they have slowed or stopped their progression. Some say they feel better now than before they were diagnosed and some even say they have become symptom-free. Some of those people take prescription drugs and pursue alternative and complementary therapies, some follow non-drug regimes only, but none follow a drug therapy only.

In other words, if your doctor is dismissive of nutrition/supplements, alternative and complementary therapies, and you only do what they say, you close yourself off to any possibility of slowing the progression. In that case, you are turning responsibility over to someone who cannot improve your health and no one cares as much about your health as you do.

If I ran into Dr. like that, I'd ask him/her if they had PD, would they seek information on how best to deal with it and might that lead them to this forum? Any person with Parkinson's, even an obstinate, old-fashioned doctor, cannot read this forum thoroughly for a few weeks and conclude the best course of action is to do nothing but take pharmaceuticals.

Not possible.

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Well said indeed!

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Thank you for taking the time to explain this in great detail. VERY much appreciated.

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You make it sound like this forum is primarily or exclusively for those who follow vitamin therapy? Where some people do use medication but largely as a supplement to the vitamins? If so, I hadn't realized this. But it does make sense now, that quite so many people here go on so often at quite such length on the benefits of vitamins and how B12 makes virtually all their symptoms go away.

I don't agree with your statement that no one here takes medication alone but if you are right about my last paragraph, I can't really argue with your point.

(I have never tried vitamins for PD which I have in quite mild form, which symptoms are largely eliminated by Sinemet. I do take CoQ10 on and off for relief of leg cramp pain arising from statin use)

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I am not implying treatment paths for other members, I am newly diagnosed and looking for input on what treatments are working for them....

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Hugo,

This forum is for everybody, regardless of their approach to their illness.

We learn a lot from disagreeing with each other. (If I didn't say so many ignorant things, I wouldn't be as smart as I am.)

I doubt anyone who pursues alternative or complementary therapies think of it as vitamin therapy. It's more complex. Vitamins are nutrients, i.e., same as food and nearly all of them are essential.

The purpose of taking vitamins is because Parkinson's triggers a significant number of other maladies, nutritional deficiencies, hormonal, enzyme, and microbiome imbalances, inflammation and oxidative stress (to name only a few) and as these other illnesses accumulate and worsen, they accelerate the progression, creating a feedback loop, so many of us try to intervene in our other health issues.

Just to clarify, I didn't say no one takes pharmaceuticals only. I said people who have slowed, stabilized, or improved their symptoms have not done so with pharmaceuticals only.

I hope you keep reading this forum.

A lot of people put a lot of information under their profile.

Marc

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You will have to decide for yourself, but I see high dose thiamine as a low risk/potentially high reward option. Your body will excrete any excess and it may slow or even stop progression of PD. Other than regular intense exercise, I believe high dose thiamine is the best thing I have done since being diagnosed. MB Anderson, as usual, is exactly right. If we only follow doctors orders and only take medication, we can only treat symptoms while gradually deteriorating...

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I was inclined to a more wholistic approach and all I got from my neurologist was, “Take this Sinemet and come back to see me in 6 months, there isn’t anything else I can do for you.” It was disheartening.

I found a neurologist in Seattle (Dr. Ilene Ruhoy) who also trained at Bastyr and with Dr. Andrew Weil for nutrition. I think she is also a psychiatrist. She uses medication, vitamins, minerals, diet, etc. She has many different tools and she isn’t afraid to use them!! I am feeling much better now than I did 3 months ago.

I guess my point is to shop around for a doctor who listens and that you feel confident that they have your best interests at heart. They are out there!

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Sage advice. Thank you for sharing.

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justhavefun2--what meds, vitamins, minerals, diet, and other tools does Dr. Ruhoy use with you? She sounds like a gem of a neurologist! My neurologist is a movement disorder specialist, but has been open about complementary therapy, although I think it's more that he believes they won't hurt, not that they will necessarily help.

I take 800 mg CoQ10 daily, as well as 2,000 mcg B-12, 6,000 IU D-3, 2500 mg Vit C, 600 mg Magnesium Taurate, 200 mg Vit E, and sometimes a B complex. I am doing well with current supplements (and PD medication) 6.5 years after diagnosis.

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Good morning! I wanted to acknowledge your post. I will post the list after I get home from work today! More soon! 🙂

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Apologies for the delay, PDGa14! I have been diagnosed since 2/18, but I have likely had PD for about three years. My symptom list is shorter now than it has been - when I am stressed my right leg drags, micrographia/small motor issues (improving) and "cogwheeling" in my right shoulder. (I did have all the above plus bathroom issues, depression, pretty severe anxiety, used a walker to walk, trouble rolling over in bed, going from sitting to standing, walking on toes/heels, brushing teeth, washing hair (back and forth motion was tough so washed hair with left hand), failed the finger/thumb tapping test. I think that's all...

Here is the list you requested:

Arginine - Per Label goes in smoothie

Carntine - Per Label goes in smoothie

CoQ10 200 mg 3x/day

CPD-choline 500 1x/day

Creatine 5 grams 1x/day

Green Tea Daily

Mucuna Purines (Sun Potion Brand) 1 T./Day

NAC 600 mg 2x/day

Omega 3s (salmon, walnuts, pumpkin seed, flax seeds) Daily

PEA - Palmitoylethanolamide 2 Capsules

- Take with Borage Oil and Quercetin

Sinemet 25/100 8/Day - 2/Dose

Turmeric 1950 mg 3 Caps, 2/Daily

Vitamin B-1 (Thiamine) 1000 Mg 2x/day

Vitamin B-12 - Liquid 500 mg 2x/day

Vitamin B-Complex "100" 2x/day

Vitamin D 5000 iu Daily

Blueberries and Banana goes in smoothie Daily

The B1 was a game changer for my energy level. I ran out once...bad mojo there! LOL

Water Aerobics 3x a week (or as often as I can make it there!) I sincerely wish I had time/ability to do more! (For example, I'd love to do John Pepper's fast walking and Peddling for Parkinson's class, but I have recently diagnosed back issues that I am working on and I still work. Soon though I pray!)

She had me buy a Breville juicer (she said an inexpensive one will do the trick) and is having me juice fruits and veggies. Admittedly, I am a pizza/burger kinda gal so juicing and smoothies are new to me.

For my back she recommends stem cell therapy or PRP injections...or no more than 2 steroid injections, if I must.

Massage therapy, occupational therapy, physical therapy are all options we have discussed, but I am focusing on food/vitamin protocol right now. It can be a bit overwhelming... I am currently checking in with her every 3 months in person and can reach out by email any time I have a question or concern. I feel blessed, blessed, blessed!

I'm with your doc...if it isn't harmful to you why not try it!? Gotta do whatever is in our control to do to prolong our quality of life for as long as possible. I don't want to end up bedridden someday and wondering if I left a rock unturned somewhere.

I am so encouraged to read that you are doing so well 6 1/2 years after diagnosis! Way to go!! WHOO HOO!!!

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Good for you!

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Dr are required to follow standard procedures which for Parkinson’s isn’t great as witnessed by all the side effects. I’m following the Dr Hinz amino acid protocol which my neurologist had never heard of? Hes following my progress as he says he doesn’t have anything necessarily better. Your treatment is up to you as you’re the one that pays the price

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Yes. It will be the best move of your life.

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Tenafterten - Mentioned B1 to my Neurologist and whilst he hadn't heard of the therapy, said it was safe to take and said OK.

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So many people are saying the same thing, that is, an individualized, multi-pronged approach (as espoused by Dr. Bredesen and many others.) Intervene in every health issue.

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Hi and Welcome! I am 49 about 5-years in with practically identical symptoms as you but on the right. Unfortunately I found this site after starting LD 100/25 and was taking 3x per day. The micrographia was killing me at work and the pain in my shoulder, arm, and hand was awful as well as my right hip. My vision was also worsening along with an internal tremor. Balance and mobility remained/remain good. Fast forward to the B1.... I’m very sensitive and respond well to a relatively low dose compared with others on site. With B1 I have reduced my LD to 1xd in the mornings (to ensure I can write) other than that it really isnt needed! I take a combo of supplements )B1, CoQ10, Mag/cal/zinc, B12, Mannitol (this is new) and Omega. With RX propranolol 10mg daily which helps with the internal tremors (they have decreased with the B1) I am also in a resagaline trail but think I have the placebo. I exercise some (not enough) Still work full-time. I believe B1 has cleared brain fog, increased energy and mood, promoted better bowel mobility and improved smell. I think the mannitol is also working to improve smell and right arm mobility (i see i swing i haven’t seen in years!) So this is me... my PD is a PITA that lingers in the background but mostly I am better than I have been in a long time with the addition of the B1. I hope this helps you some. There’s a ton of great info on this site with intelligent insights into the differing research. Unfortunately due to the nature of PD no one tx is perfect for everyone so there is a lot of trial and error. Best to you!

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Mannitol definitely helped me recover my sense of smell and improved other symptoms. It is great to see yet another person who by finding the right supplements has managed to improve the quality of their life to such an extent that they can continue working. This site is way better than Parkinsons.org.uk where most what their doctor's prescribe and suffer as a result.

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Hi ! How long were you on Mannitol before you felt any improvement ?

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Thank you so much for sharing your journey with me!!!!

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