The Game Changers; A quick update of my s... - Cure Parkinson's

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The Game Changers; A quick update of my symptoms

Kia17 profile image
58 Replies

Thiamine HCL,Vit D, Magnesium,NAC, Omega3, Cycling, Fast walk are The Game Changers.

The past 2 months have been my best days of nearly 3 years dealing with the PD.I amnot sure about the future in how the disease will manifest itself but I am more than happy to be as it is now.

In the past months I have only seen improvements. Almost 0 (ZERO) symptoms.Why almost ? Because I still have PD.

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Kia17 profile image
Kia17
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58 Replies

Thanks to Doc Costantini & Thiamine HCL,

p-oui profile image
p-oui

I find how I feel is dictated by how much exercise I'm getting, what I’m eating, how much rest I’m getting and how much water I’m drinking. I also take Vit D, Magnesium,NAC, a few other vitamins and selegiline.

AmyLindy profile image
AmyLindy in reply top-oui

I’m on Selegiline too -5mg/d my only PD med...lots of exercise, great supplements and cutting back: dairy sugar gluten& wine 🍷. Easier said than done!

Gioc profile image
Gioc

Very beautiful , KIa

For sure I would keep up the guard as you are doing very well ,as for me there may be little ups and downs because the body's response to drugs or thiamine HCL is not always the same, but after three years of thiamine HCL (vitamin b1) are still at the same levels as you say "an almost normal life".

And I'm not the only one.

And it's not a small thing.

A special thank to you and all the people here on of HU, because you are the best in the world. You never give up, this is the only way to win and we win.

Special thanks to Dott, Costantini .

Kia17 profile image
Kia17 in reply toGioc

Thanks Gio!

moonsake10 profile image
moonsake10 in reply toGioc

but not EVERYONE?

Gioc profile image
Gioc in reply tomoonsake10

Eh yep, so it would seem from some comment here on HU, but there is no census, self-diagnosis would not take it as a fact for better or for worse.

Success stories should be considered as a starting point and only a good clue how you well know.

But IMHO depends very much on the stage and extent of the lesion of dopamergic cells as perhaps dr C hypothesized here:

highdosethiamine.org/therap...

but you can ask him directly by writing to him if you have not already done so.

I was lucky, my datscan gave a more pronounced injury on the one hand and my initial UPDRS of three years ago was around 20/30 points without ever having taken levodopa, now in winter it is around 10 points but I did it myself on line. (on 199 point)

farmacologiaclinica.info/sc...

Some small high and low there is always, with the cold and fatigue of the work. I live a very intense life, but stressful (I like it this way or nothing) and with thiamina + ldopa I can still afford it for now.

My wife says that overall they have improved a lot since first in 2014, but you know wifes always have so much admiration in their husbands.

God bless women and wifes all over the world.

Moral: Why believe when you could check it out for yourself? The only thing I ask of you is to make sure you do it on the right terms and at the right time.

:-)

Hopefully.

Gio

MBAnderson profile image
MBAnderson

Whee-ha. Good going.

cshamb profile image
cshamb

what is the dosage of your vitamins and what kind of magnesium.

Im getting ready to start B1 HCL, THANKS

Kia17 profile image
Kia17 in reply tocshamb

cshamb

I have been taking Aximagnesio 300mg with my Thiamine morning dose advised by Dr Costantini and 400mg Magnesium Citrate at bedtime(self-medicated).

bassofspades profile image
bassofspades in reply toKia17

Kia17 youre not in the USA, are you? I cant find a US supplier of AxiMagnesio. Any equivalents?

Kia17 profile image
Kia17 in reply tobassofspades

Bassofspades

I am in the UK and get the Aximagnesio directly from manufacturer in Italy.

pegaso.eu/en/store/nutritio...

Rosabellazita profile image
Rosabellazita in reply toKia17

How does one contact that dr.?

Kia17 profile image
Kia17 in reply toRosabellazita

Rosabellazita

See this link please

healthunlocked.com/parkinso...

Rosabellazita profile image
Rosabellazita in reply toKia17

How do i contact him

Kia17 profile image
Kia17 in reply toRosabellazita

Dr Costantini’s email can be found on the title of the post.

Cons10s profile image
Cons10s

Thanks to you all, I began taking Thiamine HCL 6 weeks ago and have realized great improvements to my motor abilities. I’m 3.5 years since my first noticeable PD symptoms, a slight finger tremor and gait issues. I’m NOT using any Pharmaceuticals, but do use Mucuna daily, a variety of vitamin already mentioned by others, plus Moringa and CBD’s.

I’m 56, running a Company with 25 employees, shopping, traveling and enjoying life. I exercise 15-30 minutes most days.

Additionally I’ve learned a great deal about what I call “brain fuel” from a book called, Genius Foods by Max Lugavere. This has had a remarkable effect on my cognitive clarity and energy level.

Thanks to you all for the B1 insight.

Constance

JANVAN profile image
JANVAN in reply toCons10s

Hi !! Where do you living ?? Have you considered to visit Dr. Costantini, considered to do the Hinz protocol ? Which Mucuna do you use and it which form ?

How high in % the CBD Oil ?

I company with 25 employees ??? >>>>> how is it with your motor skills or do you mainly have to order, command (>>> "using your voice") ??

Kind Regards

in reply toCons10s

Constance,

If possible, could you please post a copy of your post above to this thread that is a compilation of people who are using thiamine /B1 and their results or lack of results. The idea is that people who are considering using thiamine can get an idea of reasonable expectations on thiamine as well as a potential time line in one easy to follow thread . Thank you!

healthunlocked.com/parkinso...

Art

Kia17 profile image
Kia17 in reply toCons10s

Cons10s

Please can your let us know how much Mucuna and from which manufacturer you are taking?

Cons10s profile image
Cons10s in reply toKia17

I purchase from Banyan Botanical, I like their tincture and add it to water when I don’t have time for the powder form in a smoothie. I also use Barlowe’s 40% capsules when on the go. I recommend starting with the allowances allotted by the manufacture listed on the packaging and take it up from there till you find your sweet spot.

Rosabellazita profile image
Rosabellazita in reply toCons10s

How much b1?

Kia17 profile image
Kia17 in reply toRosabellazita

I have been taking 1.5gr Thiamine in the morning and 1.5gr at noon with empty stomach for year.

ruthgt profile image
ruthgt in reply toCons10s

How much thiamine are you taking? With breakfast?

Kia17 profile image
Kia17 in reply toruthgt

I have been taking 1.5gr Thiamine in the morning and 1.5gr at noon with empty stomach for year.

JANVAN profile image
JANVAN

Thanks !! I also do now with much more Discipline

NAC,

Mg ((1)Mg glycinat,,, 2) Mg stearat,,, and 3) Mg Theoronat

Vit D ( + Vit K2)

Omega 3 (DPA more as EPA)

Exercising (still not enough)

Thiamine HCL (have to start again (with injections), but I'm planning to make a short holiday in summer to Viterbo (or Vilerbo)

Alpha-Lipon-Säure

I'm really thinking about doing the Hinz Protokoll, but the costs.........

Do you still take medication and are you working ??

MBAnderson profile image
MBAnderson in reply toJANVAN

JANVAN, please read this before you waste your time with Hinz

healthunlocked.com/parkinso....

JANVAN profile image
JANVAN in reply toMBAnderson

Thank you , MBAnderson, but I'm not really convinced, nor one, nor another way........

...Hinz has still some impressive videos, or are they fake ?

And some members of this forum are really satisfied about it...

Of course the results of Dr. Costantini are more proved, and more people have been helped......

MBAnderson profile image
MBAnderson in reply toJANVAN

If you go that route, please let us know how it does. I hope it works for you.

AmyLindy profile image
AmyLindy in reply toJANVAN

Following, looking for experience & answers...

M1tz1 profile image
M1tz1

So happy for you, Kia. That's wonderful news. xx

Kia17 profile image
Kia17 in reply toM1tz1

Thanks. Wishing the same for everyone who has PD.

Toogood profile image
Toogood

That’s great....what’s NAC please

Kia17 profile image
Kia17 in reply toToogood

Toogood

N-Acetyl Cysteine

Toogood profile image
Toogood in reply toKia17

Thanks for the quick reply...I googled it too..do you take the 600 mg..

One a day ?

Kia17 profile image
Kia17 in reply toToogood

I take one 600mg twice a day.

Toogood profile image
Toogood in reply toKia17

Ok....thanks...what about the thiamine....I have 500 mg tabs....

What do you take daily please

Kia17 profile image
Kia17 in reply toToogood

I take 1.5gr Thiamine in the morning and 1.5gr at noon.

Toogood profile image
Toogood in reply toKia17

Thanks...that’s about what I take...

That is great news!! Thanks for sharing, success stories are very encouraging.

Kia17 profile image
Kia17 in reply to

Thank you. You are absolutely right. That’s the main reason I share my story.

cshamb profile image
cshamb

I'M STARTING B1. SHOULD I CONTINUE TO TAKE SIMINET AND MUCUNA? 25/100 4 X A DAY. AND MY DOC WAS CONCERNED ABOUT B1 BEING TOXIC AT HIGH DOSE. PLS HELP

Gioc profile image
Gioc in reply tocshamb

maybe your doctor could write to dr. Costantini and see with him what is it about.

Rosabellazita profile image
Rosabellazita

Bravo

Cons10s profile image
Cons10s

I purchase from Banyan Botanical, I like their tincture and add it to water when I don’t have time for the powder form in a smoothie. I also use Barlowe’s 40% capsules when on the go. I recommend starting with the allowances allotted by the manufacture listed on the packaging and take it up from there till you find your sweet spot.

AmyLindy profile image
AmyLindy

Encouraged! What dosages are u on for NAC & Thiamine HCL (IV or oral)? IV supplements are becoming popular in USA 🇺🇸 and my town in NC...

Kia17 profile image
Kia17 in reply toAmyLindy

AmyLindy

I have been taking NAC 600mg between once or twice a day (orally).

Thiamine HCL 1.5gr morning 1.5 gr at noon with empty stomach.

KERRINGTON profile image
KERRINGTON in reply toKia17

Can you tell me how you determined your Thiamine HCL dose ?

Thanks

AmyLindy profile image
AmyLindy

From this string it seems reasonable or popular to use: NAC orally 600 mg 2x/d (but IV is better/immediately absorbed),Thiamine as injection or oral? 1.5gm 2 x/ d., 400 mg Mag Cit bedtime , vit D supplement if needed (check labs, I finally hit high threshold after Rx supplements ). MP holds promise as does Hinz protocol for some. Am I missing any major recommendations?

Kia17 profile image
Kia17 in reply toAmyLindy

AmyLindy

I have no experience of taking PD meds or supplements IV so cannot comment on that. The magnesium I take is an Italian version called Aximagnesio which is really good once taken with Thiamine HCL. Its been recommended by Dr Costantini. The magnesium citrate 400mg at bedtime is self-medicated.

Have you contacted Dr Costantini?

AmyLindy profile image
AmyLindy in reply toKia17

Thx Kia17 and no contact w Dr Con. I want to get “organized” first. I will add that I also take Mannitol as a sweetener and “prebiotic” -sure helps w constipation and clearing a crowded room - if you are not careful w dosage (gas ) ;) !

2. Probiotics are not in my regimine except by food or beverage. Kombucha is a drink I use with mixture of probiotics , with a great degree of variability/brewed by a friend and not regulated. If MP were properly regulated (standardized). I might try it but haven’t needed it for PD Symptoms yet, anyways.

3. A lot of exercise, good nutrition and stress management has helped sustain me at this stage. Selegiline pushed me into tremor reduction, enhanced unilateral gait and arm swing.

4. I Feel it is best to find all the right sources while we are fresh, so that we have our references later, when we need them and can’t quite articulate.

5. I’m so impressed by this group and willingness to share secrets of success, trials, and even error!

Kia17 profile image
Kia17

AmyLindy

Thanks for your input. I think exercise especially those that increase hear rate like: cycling , fast walk work very well in conjunction with the supplements.

I also take 5grs Mannitol 2 times a day and quite happy with the result.

lionessroar profile image
lionessroar

How did you determine 1.5 grams as the right dose of thiamine for you?

How many hours between your first dose of thiamine and your second?

What dose of vitamin D and omega-3 are you taking?

Kia17 profile image
Kia17 in reply tolionessroar

I didn’t determine, Dr Costantini did.

Thiamine at 7.30 AM and 1.30 PM.

D3, 1200 units a day.

Coolman1 profile image
Coolman1

Kia,

The above post is 2 years old. You have now 5 years post diagnosis. Can you please update us n your current condition and regimen. What is the status of progression or regression

Kia17 profile image
Kia17 in reply toCoolman1

Hi Coolman

It should be at least a decade after my PD onset.I am doing very well with no progression. What I have learned is that if we commit ourself to a healthy lifestyle we can fight back PD with least complications. Eating well , Exercise, taking enough required minerals and vitamins, mindfulness are the best approach. In one word ; Commitment.

Farooqji profile image
Farooqji in reply toKia17

.I am really motivated by some forum members including you

Kia17 profile image
Kia17 in reply toFarooqji

Keep it up my friend.

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