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-   -   Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot (https://www.neurotalk.org/parkinson-s-disease/227981-term-treatment-dose-thiamine-parkinson-disease-label-pilot.html)

badboy99 10-28-2015 01:15 PM

Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot
 
Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study

http://www.ncbi.nlm.nih.gov/pubmed/2...?dopt=Abstract

ashleyk 11-01-2015 06:05 PM

More on Thiamine
 
This is a no-brainer. Hope someone with PD insists their doctor try this.
The FDA can't possibly object.

http://www.neurores.org/index.php/ne...rticle/155/156

Note that our PD patients improved dramatically in a short time with thiamine supplements. Days after thiamine treatment, they smiled and walked normally with longer steps, and increased arm swings, and no tremors or sialorrhea was reported. Three patients did not receive carbidopa plus levodopa and cessation of those medications did not effect on their movements. The most effective treatment for PD is levodopa in combination with a peripheral decarboxylase inhibitor (carbidopa or benserazide). In a murine model, dopamine has been reported to suppress mouse-killing aggression (muricide) induced by a thiamine-deficient (TD) diet [8]. This suppressive effect can be potentiated with carbidopa [9]. Patients with PD who have undergone levodopa therapy have significantly higher cerebrospinal fluid (CSF) levels of thiamine diphosphate (TDP) and total thiamine than those patients who were not treated with this drug [1]. Moreover, thiamine deficiency can decrease the concentration of dopamine in the striatum, whereas animals fed on a diet that contained 5% ethanol exhibit increased dopamine turnover [10]. In an experimental TD study, a region-specific vesicular dysfunction (i.e., decreased levels of dopaminergic metabolites) was observed [11]. Dopamine release ii induced by intrastriatal administration of TPP or TDP (up to 1400% and 249% of the basal levels, respectively), reduced dopamine levels in the striatum may occur in cases of thiamine deficiency [12].

lurkingforacure 11-01-2015 07:49 PM

Dose?
 
Would have been helpful if they mentioned the dose, and the form of thiamine given via the intramuscular injectionons. Hard to get a doc to try this if you don't know the basic protocol to follow.

rainbow676 11-02-2015 05:30 PM

calling Sim00
 
Quote:

Originally Posted by lurkingforacure (Post 1181037)
Would have been helpful if they mentioned the dose, and the form of thiamine given via the intramuscular injectionons. Hard to get a doc to try this if you don't know the basic protocol to follow.

Agree that the dosage information would be helpful, lurking. My mom is going to her MDS tomorrow and is going to ask about this.

Based on the last names of the study authors, I think this trail may have been in Italy. If I recall correctly, Sim00 was receiving intramuscular thiamine injections in Italy. Sim00, could you kindly send along an update when you have a chance. When you wrote on July 15, you seemed to be doing well. I hope your improvements have continued.

Would also be good to see a control trial on this at some point. I wonder if one is in the works.

Thanks, all!

sim00 11-02-2015 11:47 PM

Quote:

Originally Posted by rainbow676 (Post 1181234)
Agree that the dosage information would be helpful, lurking. My mom is going to her MDS tomorrow and is going to ask about this.

Based on the last names of the study authors, I think this trail may have been in Italy. If I recall correctly, Sim00 was receiving intramuscular thiamine injections in Italy. Sim00, could you kindly send along an update when you have a chance. When you wrote on July 15, you seemed to be doing well. I hope your improvements have continued.

Would also be good to see a control trial on this at some point. I wonder if one is in the works.

Thanks, all!

:):)

Hi all, I think that intramuscular injections of Thiamine are very helpfull, you can see a good result especially when you are starting this therapy. I feel good in general, but I don't have the countercheck if I don't use Thiamine.
However the dosage is 100 mg twice a week, intramuscular injections. In Italy I use Thiamine called "Benerva".
See also this link: http://www.ultimaedizione.eu/parkinson-eng/
with the last interview with Dr. Costantini, and videos of patients treated, first and after.
Regarding a clinical trial, in the link is mentioned Dr. Fancellu in Genova - Italy.

VICTORIALOU 11-04-2015 01:18 AM

100 mg twice daily injections
 
In reading the accompanied studies it looks like the dosage given was 100 mg twice a day rather than weekly?
Perhaps you are now on a maintenance protocol?


Hi all, I think that intramuscular injections of Thiamine are very helpfull, you can see a good result especially when you are starting this therapy. I feel good in general, but I don't have the countercheck if I don't use Thiamine.
However the dosage is 100 mg twice a week, intramuscular injections. In Italy I use Thiamine called "Benerva".
See also this link: http://www.ultimaedizione.eu/parkinson-eng/
with the last interview with Dr. Costantini, and videos of patients treated, first and after.
Regarding a clinical trial, in the link is mentioned Dr. Fancellu in Genova - Italy.[/QUOTE]

sim00 11-04-2015 05:54 AM

Quote:

Originally Posted by VICTORIALOU (Post 1181568)
In reading the accompanied studies it looks like the dosage given was 100 mg twice a day rather than weekly?
Perhaps you are now on a maintenance protocol?


Hi all, I think that intramuscular injections of Thiamine are very helpfull, you can see a good result especially when you are starting this therapy. I feel good in general, but I don't have the countercheck if I don't use Thiamine.
However the dosage is 100 mg twice a week, intramuscular injections. In Italy I use Thiamine called "Benerva".
See also this link: http://www.ultimaedizione.eu/parkinson-eng/
with the last interview with Dr. Costantini, and videos of patients treated, first and after.
Regarding a clinical trial, in the link is mentioned Dr. Fancellu in Genova - Italy.

[/QUOTE]


Hi,
Your observation is entirely correct, but they are two different studies. In any case, I think we can also try to make it twice a day, there should be no side effects (consult your doctor first. I'm not a doctor), for a few days and evaluate their effectiveness. Remember, however, that thiamine to be more effective should not be taken by mouth, but for IM injections.

ashleyk 11-05-2015 10:59 AM

Before After video's of thiamine treatment
 
The site that SIM00 referred to also has video's of the PD patients.
They are in Italian with English subscript. The younger patients patients seem much improved.
http://www.ultimaedizione.eu/videos-...nts-treatment/

Wonder if you can do this at home? Intramuscular injection. Thiamine sold in vials and insulin injectors, buy online?

http://www.ultimaedizione.eu/parkinson-eng/

sim00 11-05-2015 02:44 PM

Quote:

Originally Posted by ashleyk (Post 1181826)
The site that SIM00 referred to also has video's of the PD patients.
They are in Italian with English subscript. The younger patients patients seem much improved.
http://www.ultimaedizione.eu/videos-...nts-treatment/

Wonder if you can do this at home? Intramuscular injection. Thiamine sold in vials and insulin injectors, buy online?

http://www.ultimaedizione.eu/parkinson-eng/

Hi,
sure you can do it at home. In my case, my wife, becomes a nurse for a few minutes.
I buy it in pharmacy, and requires a prescription.
Remember not to expose it to sunlight, because more is exposed becomes more ineffective.
I do not use syringes for insulin, but common 2.5ml syringes.
:winky:

Blackfeather 11-05-2015 06:42 PM

I had an appointment with my Neuro today and provided him with the info on this thread about thiamine. He was very receptive and he agreed to try it. He told me he uses thiamine as a treatment for some of his patients with dementia. I will be given thiamine early next week. I am looking forward to trying it. Will keep folks posted.


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