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Parkinson's Movement
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Thiamine

How come this is not more popular, considering Dr Cosentini's remarkable success? I have been taking increasing doses of thiamine for about a month and im experiencing very encouraging results. Just got a new bottle in the post of high dose tablets. Going to start taking 4000mg per day for a month and see if i can reproduce Dr Cosentini's results. Anyone else trying this?

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4 grams/day, one to two months for effects to appear.

I also wonder why not more attention. Why the suspicion.

Doc Costantini not trying to patent thiamine hcl. He did not charge me for his service to me. I have greatly benefitted.

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I thought that B vitamins interfered with carb/levadopa...

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Only B6

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And only if you take it close in time, about two hours, to your carbidopa levodopa dose

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I am going to move my B complex dose away from my C/L dose.

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I stopped taking b complex a few weeks ago and im thinking it isnt necessary. I dont feel like i miss it.

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There is suspicion that carbidopa depletes B6 and that long term this is why people on cdopa/ldopa die earlier than when it was just ldopa. I would get back on the b complex and take 2 hours apart from the carbidopa.

I’ve also just started thiamine hcl at 3G per day ramping up to 4

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I wont take c/l. Dont want to risk dyskinesia. I do the amino acid protocol,

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Hi !

How are you doing with the B1 ?? How do you take it and how much a day now.........how did you increased ??

and can you send the link/// give some more information of the amino acid protocol ??

Thank you in advance !!

How long are you being diagnosed and do you take some other medication ??

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Hi Janvan, actually, progress is slow on the Thiamine. Ive been on 4000mg/day for 2 weeks and change now. So far, on the positive side, my handwriting has improved somewhat, not alot, but noticeably. And my leg cramps have been less and less lately.. Still a long way to go.

I take 2000mg in the morning and another 2000mg around noon. I use Thiamine HCL. I cut my coffee down to one cup a day, maybe 2 occasionally, and no more than 3 cigarettes a day. I hear that caffeine and nicotine interfere with Thiamine though Im not 100% sure of the source of this info.

As for the Amino Acid protocol, I will link info here for you, but this I recommend that you seek professional advice. Every case is a different dose so I cant advise you on the amounts. I called Dr Hinz's office and they referred me to a practicioner near me that is trained in the protocol.

heres a good foundation as to how and why Amino Acid therapy works:

ncbi.nlm.nih.gov/pmc/articl...

This one explains the protocol very clearly and Dr Hinz's telephone number is at the bottom. Call the office and get yourself set up.

healthyselfnow.com/MTOproto...

Good luck! Keep everyone posted!

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and I was diagnosed about 5 years ago at the age of 44, I took sinemet for 6 weeks then I threw it in the garbage when I found out how it messes you up. I am not on any PD meds. All I take is Amino acids, Manitol, Thiamine, Isradipine ( a calcium channel blocker) and a few vitamins and supplements. My UPDRS score on a bad day is 31 and has not progressed further since diagnosed. Thank the Lord! In fact, since I started Amino Acid, my symptoms of anxiety and anhedonia have been eliminated completely.

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Thank you very much for the answer !! I'm on Sinemet, and I'm taking +\~ 3000mg Thiamine HCL......., it's difficult for me to get to 4000mg (o.k., I have to discipline myself).

I've reduced my Sinemet with a half Tablet (2,5 a day) but with some extra Requip.

And I'm going for Mucuna, I read and heard so much, from different people from different countries, so there has to be something on it !

This forum is very helpful for me !!

Thank you !

(Are you living in UK ??)

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I live in the USA, though I often dream about checking out the UK!

Just want you to be aware that Mucuna contains L-Dopa, so it is essentially Levodopa.

Levodopa is essentially Sinemet MINUS the Carbidopa.

Carbidopa is added to Levodopa (as in Sinemet) in order to reduce nausea in high doses of Levodopa. Carbidopa is also reported to inhibit the peripheral metabolism of Levodopa which makes it reach the brain in greater amounts. But Carbidopa irreversibly binds to B6 receptors in the brain, ultimately causing the trademark dyskinesia as you see in Parkies like Michael J Fox.

A good substitute for Sinemet, (IN MY OPINION) is Mucuna and EGCG.

Egcg is a substance found in Green Tea and has been well documented in studies that you can find on the web that show it is good for treating PD.

When you shop for Mucuna, the label tells you the equivalent of L-Dopa. L-Dopa is the direct amino acid precursor for Dopamine.

Use this information at your own risk and may the Good Lord Bless YOU!

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Hello Janvan. A month ago you said yo were going onto Mucuna. Can you tell me how it is going? We just put my husband on Mucuna along with this CD, hoping to eventually reduce the CD. Please let me hear from you> Thanks EElaine

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Hi EELAINE !

I'm taking Mucuna Pruriens Extract 95% from Eifelsan (a dutch company). Due to reaktions of Parkinsons patients who had exagerated , it isn't anymore on their site...., but you can order it still by phone.

In the beginning I've token too much also, because I was getting dyskinesia.....

Now I'm taking the Mucuna Complex, which you can see on their Website....that's better but not anouagh , because I'm still too stiff.

Overall it's not so good the last days, of course I'm realising that I have really Parkinson, and that's hard for me because I'm still not 50...........

You can also mail me : janphysio@gmx.de

Nice Eastern !!

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Hi bassofspades ! That's amazing.......5 years already and no medication. !!? I've went to germany, to an architect, who did also a lot of alternative therapies and cured himself.....I've went to a speech of him, and indeed I didn't see anything of symptoms....

Do you take Niagen ??

Do you still work ?? (that's the problem with me... I only have some little symptoms, but the work is getting more and more difficult...)

Do you have obviously symptoms ??

Thank you ! (and sorry for my english, but I'm not a native speaker.....)

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No niagen. I work more than 40 hrs per week. Yes it is difficult but better thqn a year ago. I feel improvement slowly but surely. At this point no resting tremors!

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It seems you started this regimen a few weeks ago. Do I understand correctly from your comment that you are already seeing benefits?

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I started w 250mg mega-benfo plus 50mg alli good results. That 2x day. That happened months ago. I moved to thiamin hcl on advice of Doc Costantini, and expect improvement above and beyond.

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Does it reduce your tremors ?

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Waiting

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Roy, can you please clarify on saying that you "moved to thiamine hcl"? Did you add thiamine hcl to your benfo- and alli- thiamine protocol or replaced the last two with thiamine hcl? And how much thiamine hcl do you take? Sorry for so many questions...

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Replaced 600mg a day benfo and alli with 4 g day thiamine HCl per Doc Costantini's advice

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Thank you for prompt reply!

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faridaro,

"Replaced 600mg a day benfo and alli with 4 g day thiamine HCl per Doc Costantini's advice"....

In six weeks or less if I do not experience great improvement I will switch back to Mega-Benfotiamine. That was what I first used that resulted in vast improvement of my condition.....

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Where do you buy it from.....please..

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What is mega-benfo

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Benfothiamin

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Please tell me how to contact this doctor

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something to consider:

The murky waters of thiamine

healthunlocked.com/parkinso...

Member: sunvox, healthunlocked.com/user/sunvox

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Did you work up to 4 grams/day, or just dive in at the full 4,000mg dose?

Thank you.

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4g /day. No problem.

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RoyProp, do you also take a B-complex also?

If so, recommendation??

Thank you.

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I also take B-Complex for the B6 in it. I keep this 2hrs before or 2hrs after a dose of C/L, per recommendation by park-bear (I think that was the member)

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Thank you! I am not taking any PD meds. I will, however, add a B-complex for the synergistic assimilation.

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Levodopa

Interaction Rating: Minor Be cautious with this combination.

Talk with your health provider.

The body breaks down levodopa to get rid of it. Vitamin B6 can increase how quickly the body breaks down and gets rid of levodopa. However, this is only a problem if you are taking levodopa alone. Most people take levodopa along with carbidopa (Sinemet). Carbidopa prevents this interaction from occurring. If you are taking levodopa without carbidopa, do not take vitamin B6.

For treating tardive dyskinesia: 100 mg of vitamin B6 per day has been increased weekly up to 400 mg per day, given in two divided doses.

rxlist.com/pyridoxine_vitam...

Interactions with Vitamins

Vitamin B6

Levodopa is broken down in the body by a process requiring vitamin B6. Breakdown may deplete available vitamin B6. Carbidopa blocks levodopa breakdown and prevents vitamin B6 depletion. People taking levodopa/carbidopa (Sinemet®), or levodopa plus carbidopa (Lodosyn®) have no risk for levodopa-induced vitamin B6 deficiency; it is not a problem for people to supplement vitamin B6 while taking Sinemet.

For people taking levodopa alone, small amounts of vitamin B6 (5–10 mg per day) may prevent levodopa-induced vitamin B6 deficiency. Amounts of vitamin B6 slightly higher than those required to replace depleted levels, may reduce the effectiveness of levodopa therapy and should not be taken

uofmhealth.org/health-libra...

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I'm about to begin working up to 4,000 mg a day, keeping the dose separated by two hours from B vitamins...Does anyone know of side effects at high dosages like 4,000mg?

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Agitation

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I can only ge5 100 mg here in Australia...how many would I hVe to take....

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40

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Do you take thiamine in am or pm? Thanks

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2g am, 2g pm

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What is thiamine hcl? I started my husband on 500 of the Life Extension benfothiamine which is fat soluble. Is it the same thing? Also I have read in the past if you take just one b-vite to excess that you can get unbalanced with bad effects. Adele Davis for one, warned against overdoses of B1 as leading to exhaustion and fatigue. I am also making sure he takes his b-complex to help prevent that. Why does that article say to take between 500-6oo mg a day and you are taking much more? Would appreciate your answers.

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See my Posts and Replies

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When do you take it and what , if anything, with.

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4 am and 4 pm. Take with glass of water.

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Thanks. Have ordered some. Will let everyone know if I get positive results.

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"Replaced 600mg a day benfo and alli with 4 g day thiamine HCl per Doc Costantini's advice"....

In six weeks or less if I do not experience great improvement I will switch back to Mega-Benfotiamine. That was what I first used that resulted in vast improvement of my condition.....

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I couldn’t get hcl in Australia..just thiamine..I am taking it...but will try to get it with hcl as well..

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Buy online from iherb.com

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Hi may I know where can buy thiamine hcl online and which brand to buy. Thank you

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Solgar Thiamin HCL 500mg from Amazon or special order from lifeextension.com

You will need to order several bottles to get you by for several weeks at 8 tablets a day

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How is it helping you?

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See my Profile where I have a short list. I might add my constipation issue may be resolved after a little more than a week of high dose thiamine HCl. More time needed to confirm.

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Perhaps: most medacationists don't want to divert income away from a chronic disease. Perhaps peer pressure from other entrenched medicationists.

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I started slowly with lower than recommended doses. Im still low but building up gradually. I'll be at full dose 4g in another week. For now i am feeling a hell of a lot less fatigue and my morning shakiness has decreased about 25%. Leg and back spasms have declined about 40%. I worked almost 50 hrs a week the last 3 weeks in the busy cardiac cath lab, running my butt off with no breaks, but i held up better than i have in the past working slower, easier days. My cognition must be improved as well because people at work are talking about me being all smart n stuff! This is a new thing for me.

Still some rt sided weakness though.

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That's really very nice to read about.

I will give thiamine a try. But do you take other vitamin B along thiamine ? I remember reading that one should not take B1 alone but within a complex.

Any thought, advice, reference ?

Thanks anyway for sharing your experience.

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Are you suffering from tremors ? Does it help ?

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Please let us know your progress. It certainly sounds promising! Good luck.

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How long have you been taking thiamine

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Not long. A few weeks at a lower tgan theraputic dose. Im ramping it up to 4g now

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Thanks for reply....just starting it today....

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What is your experience?

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Sorry was that q? meant for me, Roy?

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in reply to Toogood, you can answer as well.

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Mainly this is my regimen

healthunlocked.com/parkinso...

Plus the same thiamin as you

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Been on it since 30/1.....nothing yet...you?

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Much improvement. See my Profile, Posts and Replies

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No more leg tremors at all, improving handwriting, steadier hands

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I am very pleased with my overall improvement. I have three more weeks on the 2 months Doc Costantini said to reach full benefit. Hoping in this time remaining my right arm tremor will be no more or mostly improved.

In the past my wife had to cut my food but now I can get along myself. My tremor seems to be less of a problem as now it is much easier to get to sleep at bedtime.

And for resolving the constipation issue which at one time had me in hospital. Toilet time used to be a struggle as trying to unplug the toilet from those occasions of great mass. Normal and frequent movement.

Walking? Well friends keep remarking with surprise how my walking has improved. That walking problem was caused by both Parkinson's and back pain. I say back pain in order to be totally truthful. Back pain/hip pain/sciatica, no more after epidural injection, this month is the one year anniversary.

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My leg pain us gettibg better too

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Where can I find out about this. I no nothing of it thanks

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I've found info now thx

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Do you have tremors, how much and does it help. I have non stop tremor on right arm all day.

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According to Dr Cosentini we can expect a full remission in 1 or 2 months!!!! FULL REMISSION! i think that includes tremors, yo.

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Wouldn’t that be good...

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Eating nuts daily for the past year has changed a lot of things to the good....it is the thiamine

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What kind of nuts do you eat every day? Thanks.

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Yes that's right I also have a shake everyday bananas berries soymilk or coconut water walnuts almonds peanuts flax seeds chia seeds black sesame seeds one spoonful of all these and two spoonfuls of honey 😊

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Throw some kale and whey powder in there too! Thats my shake , plus berries and yogurt

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Forgot to ask, how much a day of the nuts?

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Think you need to watch the ratio with other b vitamins...

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Where do you buy the high dose thiamin please...

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Online. Search thiamine hcl 500mg

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Found it...

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Exactly what thiamine are you taking as there seems to be different formulations and does this matter? Many thanks

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Thiamine hcl yes it matters

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The right name is Dr Costantini Antonio

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2 years and 5 month and in this period i did more n.200 thiamina hcl Im. (two at week) No problem. Only a little protest from my buttocks 😊

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Did it help with the shaking....

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Any results?

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I am stable from 2 years, life almost normal, work 9 hour ad day in the flower shop, big energy from use thiamin. Only in the winter the condition go little low. I take also levodopa in according with the doctor.

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Dr Costantintini say me that tremor is the most resistent symptom and so it is. After 2 year my tremor is near zero. Sometime return when take lot cold at work or some stress moment for 15 minute at all. Very rare

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Thank you pizza spaghetti for the words of hope!

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you can see yorself the evidence of benefit. If you have a doubt take a look at no-motorium symptom ...👍

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I am 19 days in. So far so good! Going to see my dr tomorrow and educate her. Then im going to ask her flr a Rx for injections

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When i propose this to my basic doctor he saw me ,after reading Costantini’ research on web. that :” the benefits that this care promise vs the collaterals effect of thiamina (near 0) are not comparable” and he gave me injection to try.So i started and until to the first injection i have defreeze and benefit without take any other thing. So i am very certain that work.

Ps the brain cells that at this moment are dead dont came back in life, that is the limit. 😬

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Are there any side effects when taking high dose Thiamine?

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The risk is low. Restlessness, agitation and allergic reaction

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Saw my Dr but couldnt convince her to prescribe IM Thiamine HCL. She said she could not prove it was clinically indicated if her charts got audited, since Thiamine is not an FDA approved treatment for PD in the USA. However, she gave me her blessing if I wanted to find it online from a foreign pharmacy. Otherwise, she said just continue the oral tablets.

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bah! in eu we have without prescription in many country like Germany and it is very cheap

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Cost is about the same as tablets. Might as well choke them down!

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pills o injection . that it work is the important.

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I would be curios of results for people on thiamine hcl only, without Sinemet, levodoba or other PD medication.

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Are results good for B-1 thiamin for you? You take C/L also? I take 1-1/2 25/100 tabs daily down 50% after taking restore gold supplements. What thiamin dosage for your weight? Just started Thiamin low dosage. Also take Mucuna pruriens low dose. Age 77. Wt. 155 lbs. Thanks, Tom in CALIFORNIA

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I don't take c/L. I use Amino acid protocol which includes mucuna. I take 3000mg b1 with pretty good results. Weight is not really a factor, more like severity of disease and how long you've had PD. Email Dr Costantini for dose advice. Good luck!

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Thanks, do you have Dr Constantini email?

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carapetata@libero.it

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