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02-25-2015, 09:10 AM | #11 | ||
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Senior Member
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Add to this the fact that around 70% of PWP don't have the same (or any- Fox Foundation's study abstract wasn't clear to me on this) of the Prevatella bacteria in their gut which relate to thiamine, and I don't think it's too far of a stretch to say that perhaps taking oral thiamine might not be as beneficial (if at all) as taking it another way where it can bypass the compromised guts in the large majority of PWP. Plus, I am not aware that we can get injectable thiamin in the US without a script I know you mean well, ST, and appreciate your skepticism |
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02-25-2015, 10:40 AM | #12 | |||
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The event is scheduled for next Tuesday March 03 2015. Stay tuned.
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Sim00 Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016. |
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02-25-2015, 10:44 AM | #13 | ||
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02-25-2015, 10:45 AM | #14 | |||
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Wisest Elder Ever
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I looked injectable thiamin up at the FDA.gov Orange Book site:
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http://www.accessdata.fda.gov/script...ocs/tempai.cfm
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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03-03-2015, 08:34 PM | #15 | |||
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Brothers, here is the summary of the appointment I had with the doctor.
First of all, he repeated to me that as soon as I *start the injections, the disease will stop immediately. He also said that all the symptoms will improve (for some people this will be more accentuated, for someone else a little less) but all respond. I have to continue to take the medicine, I will be able to reduce it forward. The product in question is called Benerva (in Italy), and he says to do two injections a week, forever, but he establishes the dosage after the neurological examination. If the patient misses a few injections, nothing happens, but if you skip too many the symptoms resurface. In fact, he says that this therapy will reverse the symptoms, not cure the cause, but the important thing is the final result. Another important thing is the total absence of side effects. I start tomorrow morning, I will keep you updated.
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Sim00 Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016. |
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03-03-2015, 10:14 PM | #16 | |||
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Grand Magnate
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This small case-series report about thiamine/PD may be relevant to this discussion: http://www.ncbi.nlm.nih.gov/pubmed/23986125 .
It looks encouraging though three patients is not a big number. Its authors do not claim, in sim00's words, that "as soon as I start the injections, the disease will stop immediately". |
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"Thanks for this!" says: | sim00 (03-04-2015) |
03-03-2015, 10:32 PM | #17 | ||
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Junior Member
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Looking for different options for my mom, born 1946 and dX with PD in 2010. |
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"Thanks for this!" says: | sim00 (03-04-2015) |
03-04-2015, 10:59 AM | #18 | ||
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How did it go cousin? Wishing you the best. |
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"Thanks for this!" says: | sim00 (03-04-2015) |
03-04-2015, 11:43 AM | #19 | ||
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Senior Member
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I think we might see some modest benefit from thiamine in pill form, but don't think we can really hope to replicate the results seen in the articles posted in this thread without going the injection route. For what it's worth, I am finding that the injectable thiamine will require not only a script, but also a compounding pharmacy to make it. So if you take low dose naltrexone, that is made by a compounding pharmacy and they may be willing to also mix up some injectable thiamine for you if your doctor will script it for you. |
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"Thanks for this!" says: | sim00 (03-04-2015) |
03-04-2015, 12:23 PM | #20 | |||
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Member
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If you're having trouble finding the inject-able B1, here is one place that has is OTC.
http://www.canadadrugsuperstore.com/...roductID=74007 |
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"Thanks for this!" says: | sim00 (03-04-2015) |
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