DOES B1 Thiamin Help In extending the on ... - Cure Parkinson's

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DOES B1 Thiamin Help In extending the on Period of Sinemet?

GBAMIGOD profile image
14 Replies

Hi friends, for those Pwp using sinemet with B1,who feels B1 has been effective,would you say B1 helps to prolong the effect of sinemet. I am currently getting decreased on period with sinemet and I don't want to increase my dose.Would you advise to try B1 therapy for increased effect of sinemet? Your usual responses will be well appreciated.

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GBAMIGOD
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Search YouTube for " Doctor Fahn levodopa "

GBAMIGOD profile image
GBAMIGOD in reply to

Thanks RoyProp.

Pa-zzi69 profile image
Pa-zzi69

«Possibly yes» is my prudent answer based on Dr Costantini’s claim below, part of the convenient summary-overview of the Thiamine B1 protocol by forum member easilly which I encourage you to look-up:

« Once a patient has established the correct dose of thiamine / B-1 and is stable, including a good response to the Push Test and a significant reduction of symptoms, this patient will never need to increase their other Parkinson medications such as Levodopa / Sinemet or other drugs. It's possible that these standard drugs may be reduced, especially if they have side effects."

GBAMIGOD profile image
GBAMIGOD in reply to Pa-zzi69

Hi Pa-zia69 This is an exciting news.I hope it works for me,and hope to find the correct dose.Everything about parkison medication is about finding the correct dosage of drugs for maximum control of symptoms.I hope a cure is found one day during our lifetime.Thank you very much.

Chicafromchitown profile image
Chicafromchitown in reply to Pa-zzi69

Pa_zzi69

I was wondering if I am taking too little b1 hdt 1 500mg, just like gbamigod my c/l on time doesn’t last but only basically two hrs I don’t want to increase c/l I take 1 caps 25/100 3x/day I was also thinking mucuna, but I don’t know if mucuna works like c/l or you take it instead of c/l my problem is dyskinesia if I take too much c/l I rather work with supplements if possible.

Pa-zzi69 profile image
Pa-zzi69 in reply to Chicafromchitown

I am a novice at this but here’s what I understand, from easilly ’s very helpful summaries on this forum:

You will know that you’re taking too much B1 when your symptom[s] worsen; then you should stop taking it for 3-7 days, then restart B1 at half dose. The appropriate level is highly variable from person-to-person, from 0.1 to 6 grams, a 60-to-1 range.

Below is my summary of understanding at this time, as a novice currently experimenting with B1 dosage. I would appreciate critical review, from easilly in particular.

Vit B1 [Thiamine HCL] Dr Costantini =====================================

Primer [a very thorough introduction]:

healthunlocked.com/parkinso...

Dosage info:

healthunlocked.com/parkinsonsmovement/posts/140241797/hdt-dosing-how-much-should-we-take-a-reference-page-to-add-your-dosing-information-to

- Dr Costantini: "Generally, with the oral therapy we start with 2 grams each day to be taken once a day in the morning, in order to increase the dose later consequently to the results obtained.» The appropriate dosage is highly variable from person-to-person, from 0.1 to 6 grams, a 60-to-1 range. Italians and heavy-weights require higher levels than Northern Europeans and light-weights.

- the optimum effective dose: from 100 mg to 6 grams per day, a huge 60-to-1 spread!

- Dosage can be delicate: Kia17’s overdose [worse symptoms] after 1.5yr, solution: stop 1day/wk [14%]

- The sooner a worsening of symptoms appears, the lower the optimal dose is likely to be.

- First signs of symptom improvement: 1 day to 3 months !…

- Overdose by Dr C: healthunlocked.com/parkinsonsmovement/posts/139536933/a-must-read-for-anyone-considering-testing-or-using-hdt-direct-from-dr.-costantini-to-hu-forum-members-on-12-09-2018-re-overdosing-and-hdt

- 140-to-1 oral/injection ratio: 1 intramuscular injection of 100mg/week = 14 g orally [2 g/day]

- estimate 1% overdose on 200-300mg/week [4-6 g/day]

- for ethnicity other than Italian, start dose half of what published previously [prior 12.’18]

healthunlocked

- testimonials: healthunlocked.com/parkinsonsmovement/posts/137940250/who-is-taking-thiamine-hdt-a-brief-summary-of-any-benefit-that-you-attribute-to-its-use-reference-page-email-carapetata-libero.it

- FAQs: DR. COSTANTINI & DR. COLANGELI ANSWER 58 FREQUENTLY ASKED QUESTIONS (FAQs) ABOUT HDT / THIAMINE / B1 PROTOCOL / Email : carapetata@libero.it

- thiamine w/o medication: healthunlocked.com/parkinsonsmovement/posts/139550809/does-anyone-else-just-take-thiamine-w-o-medication-if-so-for-how-long-and-how-effective-is-it

- helpful members: Art [easilly] and Roy Propsner [also Facebook group]

Misc

- Dr Costantini to PixelPaul: "start sinemet 25/100 along with B1 because they work synergistically. »

- Dr Costantini: "we use thiamine hydrocloride intramuscular phials or tablets taken by mouth."

- The oral therapy is as effective as the intramuscular one. Some follow-ups of the results are always necessary »

- Dr. Costantini likes the intramuscular injections, as they seem to hit the mark more often than not on the first try and their benefits can be apparent within hours! [easilly]

- possible substantial relief with HDT supplement alone if relatively newly diagnosed with modest symptoms... may be all you ever need [no medication] to keep things as they are! [easilly]

====================================================================

Juliegrace profile image
Juliegrace

I feel B1 works for me, but it does not increase my on time.

GBAMIGOD profile image
GBAMIGOD in reply to Juliegrace

HI JulieGrace, are you on Sinemet as well? If so,how are you sure that,it is not sinemet that is working for you,instead of B1. How then do you know that B1 is working?I have not read or seen any postings or article that says B1 alone helps to supress PD symptoms.

Juliegrace profile image
Juliegrace in reply to GBAMIGOD

I have been taking carbidopa/levodopa (c/l) the generic form of Sinemet for almost four years. I've been taking B1 injections for over a year. The B1 helps with energy and anxiety and an overall feeling of improved stability. The c/l allows me to function somewhat normally by reducing/eliminating bradykinesia while I am on. I have no confusion about the actions of each.

Berylhorsey1 profile image
Berylhorsey1

I would just use B1 for all its advantages. I find it a wonderful product.

Stevenmast profile image
Stevenmast

I take mucuna and vitamin B1 with my matcha green tea. I do think B1 has made a slight difference in up time but recently I added Mannitol to all three of my doses it appears to have made a big difference to overall up time

GBAMIGOD profile image
GBAMIGOD

Thank you again juliegrace,Berryhorsey and stevenmast. I tried one tablet a day 500mg B1,with my regular sinemet.I felt more fatigue after four days and PD symptoms reoccured more often with reduced on periods.Constipation was improved tremedously. I am thinking I might have overdosed on B1.Iplan to stop for one or two weeks and try with 1/2 500mg tablet of B1 according to some posts on this forum.I understand everyone reacts differently to medications. Can anyone share information about what dose of B1 works best?

Juliegrace profile image
Juliegrace in reply to GBAMIGOD

Below is a link to a recent post asking members about their B1 dosage. I think you will see that there are many answers and there is no single "optimal" dose. From everything I've read and my own experience, trial and error is the method for finding your dose. If 500mg is too much, some people are having success with 100-200mg.

healthunlocked.com/parkinso....

GBAMIGOD profile image
GBAMIGOD

Thanks Juliegrace.

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