6 ms·

I just found out about Thiamine (vitamin B1) megadose therapy for Parkinson's: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762356/ https://www.ncbi.nlm.nih.g

I just found out about Thiamine (vitamin B1) megadose therapy for Parkinson's: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762356/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762356/ Another study: https://pubmed.ncbi.nlm.nih.gov/26505466/ https://pubmed.ncbi.nlm.nih.gov/26505466/ > Conclusions: Administration of parenteral high-dose thiamine was effective in reversing PD motor and nonmotor symptoms. The clinical improvement was stable over time in all the patients. From our clinical evidence, we hypothesize that a dysfunction of thiamine-dependent metabolic processes could cause selective neural damage in the centers typically affected by this disease and might be a fundamental molecular event provoking neurodegeneration. Thiamine could have both restorative and neuroprotective action in PD. This experience report of halting Parkinson's: https://youtu.be/iuSOQOTyB9w https://youtu.be/iuSOQOTyB9w

surume 3y ago
God bless you for sharing this. Thank you.
jtbayly 3y ago
If this Was discovered 10 years ago, I’m assuming it must be fairly limited in helping, or the results haven’t lasted or something?
- Mizza 3y ago
  The cynic in me assumes that it's because this is not a patentable drug. EDIT: MJF foundation is aware of it at least - https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-parkinsons https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-par..., but points out problems with the study. Further Googling quickly leads to the usual quackery about the magical properties of different supplements and vitamins. Hope this goes somewhere though.
  - _qua 3y ago
    No way. About five years ago there was a quack-y study about reducing death in sepsis which called for high-dose vitamin C, thiamine and steroids. None of these are patent protected. The first study purported to show a 100% reduction in mortality. There were many RCTs done after this which did not bear out the effect, and it has now essentially been proven to be ineffective. it is possible to fund studies without industry money.
    - giantg2 3y ago
      Who actually thought that steroids help with an infection? Don't those usually make you more susceptible?
      - robbiep 3y ago
        During COVID, steroids were rapidly identified as providing a positive survival benefit and became standard of care. There is actually a good reason to think that steroids are beneficial in severe infections. This is because often in a severe infection/inflammation, a big portion of the damage is done by the inflammatory response. Reading about the pathophysiology of influenza 13 years ago after H1N1, I came to this conclusion, and it was trialed, but good quality studies showed it to not be effective. COVID has a slightly different pathophysiology and in COVID it works. But yea, as a rule, it’s not a good idea to dose with steroids if sick
      - vitus 3y ago
        If most of the actual harm is being done by your immune system going into overdrive, then yeah, steroids can help. You'd want to simultaneously treat the infection, of course. "Multiple randomized trials indicate that systemic corticosteroid therapy improves clinical outcomes and reduces mortality in hospitalized patients with COVID-19 who require supplemental oxygen, presumably by mitigating the COVID-19-induced systemic inflammatory response that can lead to lung injury and multisystem organ dysfunction." https://www.covid19treatmentguidelines.nih.gov/therapies/immunomodulators/corticosteroids/ https://www.covid19treatmentguidelines.nih.gov/therapies/imm... But yes, you're also right that it usually makes you more susceptible to infection because your immune system isn't working as hard.
        giantg2 3y ago
        I can see that in some cases. I doubt that would be beneficial in the case of sepsis, right?
        vitus 3y ago
        Actually, it's complicated, and there really isn't consensus one way or another. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5949415/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5949415/ "Seventeen meta-analyses of these studies have been performed and have similarly shown conflicting results with some demonstrating a survival advantage (4-6) while other have not (7-10). Consequently, true equipoise exists with regards to the clinical benefit of corticosteroids in patients with severe sepsis and septic shock. ... In summary, the use of corticosteroids in patients with severe sepsis and septic shock is not associated with improved patient centered outcomes, however this treatment is safe and without an increased risk of complications. Corticosteroids appear to have synergistic biological effects when combined with intravenous vitamin C and thiamine and may be associated with improved patient centered outcomes (21)." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8604467/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8604467/ "In this review article, we reviewed a total of eight different articles being done in last 10 years, relevant to the clinical outcome and eﬀects of corticosteroids. Among those, two demonstrated improved clinical outcomes, two showed both improved clinical outcomes and decreased mortality, three showed increased adverse eﬀects, and the remaining one showed unequivocal results."
  - giantg2 3y ago
    There is a fair amount of research on diet and nutrition. Much of that is not patentable. For example, I think a recent one was all over the news about magnesium rich foods lowering risk for dementia. Unfortunately this area sees a lot of back and forth in some areas (like with eggs).
  - robbiep 3y ago
    This is such a horseshit characterisation of medical research. Everyone bangs in about the medical industrial complex, and points to either herbs and vitamins, or more recently ivermectin, or hydroxychloroquine. Everyone conveniently just rolls over the fact that steroids (also patent free) were rapidly identified by a massive research study in the UK, became standard of care, and saved hundreds of thousands of lives. Is the pharma industry broken? Yes. Are there doctors who are conveniently leaving the cheap things on the shelf so a pharma company can profit off misery? Doctors are people too. In the most extreme form of this conspiracy thinking, apparently no doctors get or die from cancer. Just think on that for a second
- bitL 3y ago
  Most doctors would laugh at vitamin supplementation even at pharmaceutic megadoses despite people reporting they feel much better. I have seen both GPs and a neurosurgeon laughing about it.
  - ethbr0 3y ago
    When in doubt, just throw the kitchen sink at the problem. https://www.hangoverkw.com/ https://www.hangoverkw.com/
cycomanic 3y ago
https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-parkinsons https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-par... The Michael J Fox foundation is more muted and says evidence is still missing. There have only been 2 trials and both were missing a placebo control group.
- huhtenberg 3y ago
  It's for the US and Canada only.
- oefnak 3y ago
  Imagine having Parkinsons and being in the placebo control group.
  - chris-orgmenta 3y ago
    If a treatment in a placebo controlled study shows a vast improvement over placebo, the studies are sometimes finished early and are considered 'unethical to continue'. e.g. HAART for HIV/AIDS.
  - wyldfire 3y ago
    Today we should assume that it's harmless to get the placebo. Only if a trial shows extraordinary consistent benefit without drawbacks would they stop it because the placebo group is harmed for lack of access to the treatment.
  - DavidPiper 3y ago
    I used to share this sentiment for Parkinsons and other currently-intractable conditions. I still do sometimes, depending on the circumstances of the patient in question. But the thing that stopped me generalising this was seeing second-hand that trialing a new treatment can be extraordinarily dangerous (and/or fatal). Imagine being in the experiment group and the untested treatment being a catastrophic failure.
  - NobleLie 3y ago
    Imagine symptoms improving being in the placebo group? What are the statistics on that?
wyldfire 3y ago
> 100 mg of thiamine administered intramuscularly twice a week Is it possible to get anywhere near this much with dietary thiamine?
- deleted 3y ago
  [deleted]
- helsinkiandrew 3y ago
  > Is it possible to get anywhere near this much with dietary thiamine? High thiamine food stuffs have a few milligram at most so it would take some effort. However, many B1 vitamin tablets have 100mg-300mg, although I wonder how well that is absorbed compared with an intramuscular shot - it would seem that you could consume the equivalent of 200mg a week.
- bitL 3y ago
  I read somewhere that gut can only let around 80mg thiamine/day and gut gets saturated over time, so only IM/IV would work long-term.
FollowingTheDao 3y ago
Take a look at zinc instead. It helps increase the activity of enzymes that break down alpha-synuclein. https://academic.oup.com/hmg/article/23/11/2791/621896 https://academic.oup.com/hmg/article/23/11/2791/621896
c_hagau 3y ago
Published in the "Journal of Integrative and Complementary Medicine", "The leading peer-reviewed journal providing scientific research for the evaluation and integration of complementary medicine into mainstream medical practice." "Integrative and Complementary Medicine" is a fancy way of saying quackery. Also, the video you linked to is on a channel run by a person describing himself as "a certified functional medicine practitioner & naturopathic nutritional therapist [..]. He enjoys making videos on a wide variety of health-related topics ranging from nutritional biochemistry to circadian biology, animal-based nutrition, and the dangers of electromagnetic radiation." No further questions, your honor.
- tpoacher 3y ago
  [flagged]
- canadiantim 3y ago
  My pet peeve is people dismissing potentially very valuable scientific results because they’re afraid of quackery… Yes we should be cautious but no we should not dismiss. In fact I consider myself very fortunate for stumbling on this information as it may be very helpful for someone I love and I want to explore every possible way that can help.
  - sokoloff 3y ago
    That's the precise essence of why quackery is dangerous. People are searching for "every possible way that can help" and quackery can easily exploit that natural tendency. (I am not qualified to render any opinion on whether this specific protocol is quackery.)
    - canadiantim 3y ago
      That's also the precise essence of throwing out the baby with the bathwater. I'd much rather have the information in front of me so I can evaluate it and make my own determinations. If the parent commenter had their way I would've never seen this information. Now I can actually vet it out and do my own research. I think it's infinitely more dangerous to deprive people of information.
bitL 3y ago
Is it because of thiamine dysfunction or because thiamine at 2000x RDA doses acts as a carbonic anhydrase inhibitor, i.e. would acetazolamide work the same?
hanniabu 3y ago
This further assures my thought that Parkinsons is caused by gut bacteria
- tornato7 3y ago
  Say more about your theory
  - pazimzadeh 3y ago
    A gut bacterial amyloid promotes α-synuclein aggregation and motor impairment in mice https://elifesciences.org/articles/53111 https://elifesciences.org/articles/53111 Note, this was in mono-colonized gnotobiotic mice.

surume 3y ago

God bless you for sharing this. Thank you.

jtbayly 3y ago

If this Was discovered 10 years ago, I’m assuming it must be fairly limited in helping, or the results haven’t lasted or something?

Mizza 3y ago
The cynic in me assumes that it's because this is not a patentable drug. EDIT: MJF foundation is aware of it at least - https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-parkinsons https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-par..., but points out problems with the study. Further Googling quickly leads to the usual quackery about the magical properties of different supplements and vitamins. Hope this goes somewhere though.
- _qua 3y ago
  No way. About five years ago there was a quack-y study about reducing death in sepsis which called for high-dose vitamin C, thiamine and steroids. None of these are patent protected. The first study purported to show a 100% reduction in mortality. There were many RCTs done after this which did not bear out the effect, and it has now essentially been proven to be ineffective. it is possible to fund studies without industry money.
  - giantg2 3y ago
    Who actually thought that steroids help with an infection? Don't those usually make you more susceptible?
    - robbiep 3y ago
      During COVID, steroids were rapidly identified as providing a positive survival benefit and became standard of care. There is actually a good reason to think that steroids are beneficial in severe infections. This is because often in a severe infection/inflammation, a big portion of the damage is done by the inflammatory response. Reading about the pathophysiology of influenza 13 years ago after H1N1, I came to this conclusion, and it was trialed, but good quality studies showed it to not be effective. COVID has a slightly different pathophysiology and in COVID it works. But yea, as a rule, it’s not a good idea to dose with steroids if sick
    - vitus 3y ago
      If most of the actual harm is being done by your immune system going into overdrive, then yeah, steroids can help. You'd want to simultaneously treat the infection, of course. "Multiple randomized trials indicate that systemic corticosteroid therapy improves clinical outcomes and reduces mortality in hospitalized patients with COVID-19 who require supplemental oxygen, presumably by mitigating the COVID-19-induced systemic inflammatory response that can lead to lung injury and multisystem organ dysfunction." https://www.covid19treatmentguidelines.nih.gov/therapies/immunomodulators/corticosteroids/ https://www.covid19treatmentguidelines.nih.gov/therapies/imm... But yes, you're also right that it usually makes you more susceptible to infection because your immune system isn't working as hard.
      - giantg2 3y ago
        I can see that in some cases. I doubt that would be beneficial in the case of sepsis, right?
        vitus 3y ago
        Actually, it's complicated, and there really isn't consensus one way or another. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5949415/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5949415/ "Seventeen meta-analyses of these studies have been performed and have similarly shown conflicting results with some demonstrating a survival advantage (4-6) while other have not (7-10). Consequently, true equipoise exists with regards to the clinical benefit of corticosteroids in patients with severe sepsis and septic shock. ... In summary, the use of corticosteroids in patients with severe sepsis and septic shock is not associated with improved patient centered outcomes, however this treatment is safe and without an increased risk of complications. Corticosteroids appear to have synergistic biological effects when combined with intravenous vitamin C and thiamine and may be associated with improved patient centered outcomes (21)." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8604467/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8604467/ "In this review article, we reviewed a total of eight different articles being done in last 10 years, relevant to the clinical outcome and eﬀects of corticosteroids. Among those, two demonstrated improved clinical outcomes, two showed both improved clinical outcomes and decreased mortality, three showed increased adverse eﬀects, and the remaining one showed unequivocal results."
- giantg2 3y ago
  There is a fair amount of research on diet and nutrition. Much of that is not patentable. For example, I think a recent one was all over the news about magnesium rich foods lowering risk for dementia. Unfortunately this area sees a lot of back and forth in some areas (like with eggs).
- robbiep 3y ago
  This is such a horseshit characterisation of medical research. Everyone bangs in about the medical industrial complex, and points to either herbs and vitamins, or more recently ivermectin, or hydroxychloroquine. Everyone conveniently just rolls over the fact that steroids (also patent free) were rapidly identified by a massive research study in the UK, became standard of care, and saved hundreds of thousands of lives. Is the pharma industry broken? Yes. Are there doctors who are conveniently leaving the cheap things on the shelf so a pharma company can profit off misery? Doctors are people too. In the most extreme form of this conspiracy thinking, apparently no doctors get or die from cancer. Just think on that for a second
bitL 3y ago
Most doctors would laugh at vitamin supplementation even at pharmaceutic megadoses despite people reporting they feel much better. I have seen both GPs and a neurosurgeon laughing about it.
- ethbr0 3y ago
  When in doubt, just throw the kitchen sink at the problem. https://www.hangoverkw.com/ https://www.hangoverkw.com/

cycomanic 3y ago

https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-parkinsons https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-par... The Michael J Fox foundation is more muted and says evidence is still missing. There have only been 2 trials and both were missing a placebo control group.

huhtenberg 3y ago
It's for the US and Canada only.
oefnak 3y ago
Imagine having Parkinsons and being in the placebo control group.
- chris-orgmenta 3y ago
  If a treatment in a placebo controlled study shows a vast improvement over placebo, the studies are sometimes finished early and are considered 'unethical to continue'. e.g. HAART for HIV/AIDS.
- wyldfire 3y ago
  Today we should assume that it's harmless to get the placebo. Only if a trial shows extraordinary consistent benefit without drawbacks would they stop it because the placebo group is harmed for lack of access to the treatment.
- DavidPiper 3y ago
  I used to share this sentiment for Parkinsons and other currently-intractable conditions. I still do sometimes, depending on the circumstances of the patient in question. But the thing that stopped me generalising this was seeing second-hand that trialing a new treatment can be extraordinarily dangerous (and/or fatal). Imagine being in the experiment group and the untested treatment being a catastrophic failure.
- NobleLie 3y ago
  Imagine symptoms improving being in the placebo group? What are the statistics on that?

wyldfire 3y ago

> 100 mg of thiamine administered intramuscularly twice a week Is it possible to get anywhere near this much with dietary thiamine?

deleted 3y ago
[deleted]
helsinkiandrew 3y ago
> Is it possible to get anywhere near this much with dietary thiamine? High thiamine food stuffs have a few milligram at most so it would take some effort. However, many B1 vitamin tablets have 100mg-300mg, although I wonder how well that is absorbed compared with an intramuscular shot - it would seem that you could consume the equivalent of 200mg a week.
bitL 3y ago
I read somewhere that gut can only let around 80mg thiamine/day and gut gets saturated over time, so only IM/IV would work long-term.

FollowingTheDao 3y ago

Take a look at zinc instead. It helps increase the activity of enzymes that break down alpha-synuclein. https://academic.oup.com/hmg/article/23/11/2791/621896 https://academic.oup.com/hmg/article/23/11/2791/621896

c_hagau 3y ago

Published in the "Journal of Integrative and Complementary Medicine", "The leading peer-reviewed journal providing scientific research for the evaluation and integration of complementary medicine into mainstream medical practice." "Integrative and Complementary Medicine" is a fancy way of saying quackery. Also, the video you linked to is on a channel run by a person describing himself as "a certified functional medicine practitioner & naturopathic nutritional therapist [..]. He enjoys making videos on a wide variety of health-related topics ranging from nutritional biochemistry to circadian biology, animal-based nutrition, and the dangers of electromagnetic radiation." No further questions, your honor.

tpoacher 3y ago
[flagged]
canadiantim 3y ago
My pet peeve is people dismissing potentially very valuable scientific results because they’re afraid of quackery… Yes we should be cautious but no we should not dismiss. In fact I consider myself very fortunate for stumbling on this information as it may be very helpful for someone I love and I want to explore every possible way that can help.
- sokoloff 3y ago
  That's the precise essence of why quackery is dangerous. People are searching for "every possible way that can help" and quackery can easily exploit that natural tendency. (I am not qualified to render any opinion on whether this specific protocol is quackery.)
  - canadiantim 3y ago
    That's also the precise essence of throwing out the baby with the bathwater. I'd much rather have the information in front of me so I can evaluate it and make my own determinations. If the parent commenter had their way I would've never seen this information. Now I can actually vet it out and do my own research. I think it's infinitely more dangerous to deprive people of information.

bitL 3y ago

Is it because of thiamine dysfunction or because thiamine at 2000x RDA doses acts as a carbonic anhydrase inhibitor, i.e. would acetazolamide work the same?

hanniabu 3y ago

This further assures my thought that Parkinsons is caused by gut bacteria

tornato7 3y ago
Say more about your theory
- pazimzadeh 3y ago
  A gut bacterial amyloid promotes α-synuclein aggregation and motor impairment in mice https://elifesciences.org/articles/53111 https://elifesciences.org/articles/53111 Note, this was in mono-colonized gnotobiotic mice.