7 ms·

"I suspect this dynamic is not limited to Alzheimer’s research." Agreed, I think it is a universal problem in science. I have an illness that has been curable

"I suspect this dynamic is not limited to Alzheimer’s research." Agreed, I think it is a universal problem in science. I have an illness that has been curable for decades now, but this cure is treated with hostility by the medical establishment. I look forward to the day when the cabal of my illness collapses. Hopefully then I will be able to talk about what happened without people getting angry.

keeganpoppen 7y ago
looks like that day isn't today, given the downvotes xD in fairness, i think people have a hard time taking claims like this seriously without a little more information, due to its superficial similarity to those of a "crackpot". (but while the _precision_ is pretty poor on the correctness of "crackpot" theories, the _recall_ is pretty much 100%) arguably > 100%, to be a bit tongue-in-cheek
- roenxi 7y ago
  Even more information wouldn't really help. 'Crackpot' is something of a shorthand for an idea that disagrees with consensus research position. The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence.
  - wtallis 7y ago
    > The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence. The manner in which someone presents their ideas is a decent secondary indicator. Common red flags include being evasive about what disease they're referring to, being unable to demonstrate where the mainstream theory fails, being unable to point to any good experimental evidence that even hints that the crackpot theory may be an equal or better explanation, not being able to anticipate and have a good answer for the most obvious questions raised by the crackpot theory.
    - wavepruner 7y ago
      Thank you for the feedback regarding how I come across. Next time I will try to include more specific detail in the OP that hopefully does not upset people. I've found that a vague introduction protects me from down-votes, but perhaps there is a way to talk about some details without that happening. The illness is chronic mercury toxicity and the treatment is chelation therapy. I know a man who reversed his dementia with chelation therapy. He's an older guy that would get lost in his own neighborhood. Steven Fowkes, a chemist, has done a lot of work in presenting the some of the latest research regarding Alzheimer's and how it relates to mercury toxicity. A good start is his Quora answer here: https://www.quora.com/Why-havent-we-made-progress-in-a-cure-for-Alzheimers-disease https://www.quora.com/Why-havent-we-made-progress-in-a-cure-... Some other good scientific literature is the work of Boyd Hayley with the chelator emeramide. He's in the process of getting it approved through the FDA for treatment of acute mercury toxicity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract
      - wtallis 7y ago
        You're really not helping your case by citing two people who come across as even more shifty. Piling on more low-quality evidence like this just raises more questions and doubts, and gives the impression that you either cannot identify credible evidence or that none exists.
        not_kurt_godel 7y ago
        Agreed. The first source cites his own talk: https://www.youtube.com/watch?v=PBTr9iQQuq4 https://www.youtube.com/watch?v=PBTr9iQQuq4, in which he starts out with the disclaimer: > It [his cure for Alzheimer's] isn't a proven reality so if you're looking for double-blind clinical studies of this you're gonna be disappointed. But if you're willing to suspend your disbelief and try something as simple as giving your family member without Alzheimer's disease something like coconut oil and B-complex vitamins and see if it works, you may be very pleased. Suspending disbelief should not be a requirement to make a persuasive argument about a scientific subject. This guy just smacks of snake oil salesman through and through.
  - darkerside 7y ago
    Hard disagree. Science is great, but logic is greater.
- zby 7y ago
  From another Hacker News discussion: "One common theme in the chronic Lyme communities is that people who go into remission tend to attribute their response to whatever technique, supplement, or medication they were trying at the time." https://news.ycombinator.com/item?id=21707343 https://news.ycombinator.com/item?id=21707343 Once people form a community around a particular therapy the community will never admit that the therapy was wrong. On the other hand https://equilibriabook.com/ https://equilibriabook.com/ gives shocking examples of how the medical establishment was wrong even though all the information was available and an individual could do much better not following mainstream medical advice. That can happen when the incentives in the research institutions are misaligned. This is a subject I also put a lot of thinking into recently:https://medium.com/@zby/rational-patient-community-6d3617dffcfe https://medium.com/@zby/rational-patient-community-6d3617dff...
internet_user 7y ago
Lyme? You were able to clear long-term post-lyme with i.v. abx? I am interested to hear what you have to say.
- wavepruner 7y ago
  Lyme may be a complicating factor, but I do not believe it is the root cause. I won't go into details because it will just invite more down votes. You can look at my older posts if you really want to know more. I talked about it a bit when I first created this account.
  - a1369209993 7y ago
    > I won't go into details because it will just invite more down votes. I'd just like to clairify that I downvoted because of the lack of details, not their presence.
- Aqueous 7y ago
  i was able to clear it with long term abx but they were not iv - iv exacerbates matters for me (still not sure how). the cocktail that worked for me was long term Biaxin (claritbromycin) accompanied by Plaquenil (hydroxychloroquine). i have gotten better from severe neurocognitive Lyme (encephalopathy) from this cocktail twice now, and the one time i went off of it i relapsed within 1 - 2 months. i can’t explai. why it works, but i am fairly good evidence that it does. sadly there is still a lot of hostility to even this treatment due to hesitation around long-term antibiotics, and recovery takes months - making it difficult to observe. and i think only a few doctors are aware of it as an option.
OGWhales 7y ago
Care to share further? You have sparked my curiosity.
- umvi 7y ago
  It's probably one of those illnesses like cluster headaches that can be treated with a currently-illegal drug like psychedelic mushrooms.
  - wayoutthere 7y ago
    Ketamine works wonders for them too. Clinical trials are happening for mushrooms as well.
    - OGWhales 7y ago
      Ketamine is already used medically, correct? I'd imagine that would be easier to push/study because of that. Still super glad to see psychs being studied. It always frustrated me that due to scheduling in the US it was much harder to study them.
      - wayoutthere 7y ago
        Yeah, ketamine is used as a sedative and painkiller in people who don't tolerate opioids. It's used off-label in low doses for treatment of depression and chronic migraines -- though is almost always administered by a doctor in a structured theraputic regimen. The success of an approved drug like ketamine in treating depression and chronic migraines has opened the doors for studying other hallucinogens.
- wavepruner 7y ago
  Going into details will just invite more down votes. You can look through my older posts if you really want to know. I talked about it a bit when I first created this account.
  - 7y ago
patmcc 7y ago
How does the medical establishment benefit from not curing your illness?
- grzm 7y ago
  By being able to charge for ongoing treatment.
- wavepruner 7y ago
  I don't think they benefit. It's just a complicated issue and change takes time.
- internet_user 7y ago
  The benefit is in punting off complicated case quicker, because the insurance pay out is the same, regardless if you spend 30 seconds or 30 minutes on the patient. There is often nothing you can do to help anyway, but you can certainly bill 250 bucks every 5 minutes, and many, many do so. In fact, some physicians will not even accept complicated cases, especially if they involve chronic pain treated with opiates, thanks to the hysteria around overdoses today. And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals.
  - monadgonad 7y ago
    > And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals. This does not logically follow from what you said at all. The NHS has not "failed", nor does it have a private tier - it commissions some treatments from private clinics for purely political reasons. These treatments are still completely free to the patient. An NHS hospital isn't receiving insurance payouts, so it has an incentive to treat people quickly and efficiently, with complete cures being preferred over long-term management when possible.
    - internet_user 7y ago
crimsonalucard 7y ago
I don't blame it on science. The principles of science are deliberately invented to get around this problem. Blame it on human behavior. It's unfortunate to say that the very tenants science tries to eliminate are actually normal parts of human behavior. Our actions, logic and reasoning are dominated by emotion and an attempt to hold onto power. Status seeking and religious bias are normal parts of human behavior. The irony of it all is that we hate this type of behavior but are seduced by it nonetheless. A good analogy is the Dark side of the force. One thing I've seen people fall for is that they think they're immune to this bias by being aware that it exists. Nothing is further from the truth. We are all victims of bias and we are all not immune because to be biased is to be human.

keeganpoppen 7y ago

looks like that day isn't today, given the downvotes xD in fairness, i think people have a hard time taking claims like this seriously without a little more information, due to its superficial similarity to those of a "crackpot". (but while the _precision_ is pretty poor on the correctness of "crackpot" theories, the _recall_ is pretty much 100%) arguably > 100%, to be a bit tongue-in-cheek

roenxi 7y ago
Even more information wouldn't really help. 'Crackpot' is something of a shorthand for an idea that disagrees with consensus research position. The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence.
- wtallis 7y ago
  > The only tool an average person has to determine an idea as truth or fiction is whether it lines up with the current professed norms; so for a technical forum like HN ideas that disagree with the standard research position can only be ignored due to lack of evidence. The manner in which someone presents their ideas is a decent secondary indicator. Common red flags include being evasive about what disease they're referring to, being unable to demonstrate where the mainstream theory fails, being unable to point to any good experimental evidence that even hints that the crackpot theory may be an equal or better explanation, not being able to anticipate and have a good answer for the most obvious questions raised by the crackpot theory.
  - wavepruner 7y ago
    Thank you for the feedback regarding how I come across. Next time I will try to include more specific detail in the OP that hopefully does not upset people. I've found that a vague introduction protects me from down-votes, but perhaps there is a way to talk about some details without that happening. The illness is chronic mercury toxicity and the treatment is chelation therapy. I know a man who reversed his dementia with chelation therapy. He's an older guy that would get lost in his own neighborhood. Steven Fowkes, a chemist, has done a lot of work in presenting the some of the latest research regarding Alzheimer's and how it relates to mercury toxicity. A good start is his Quora answer here: https://www.quora.com/Why-havent-we-made-progress-in-a-cure-for-Alzheimers-disease https://www.quora.com/Why-havent-we-made-progress-in-a-cure-... Some other good scientific literature is the work of Boyd Hayley with the chelator emeramide. He's in the process of getting it approved through the FDA for treatment of acute mercury toxicity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346673/ https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract https://www.ncbi.nlm.nih.gov/pubmed/29444690?dopt=Abstract
    - wtallis 7y ago
      You're really not helping your case by citing two people who come across as even more shifty. Piling on more low-quality evidence like this just raises more questions and doubts, and gives the impression that you either cannot identify credible evidence or that none exists.
      - not_kurt_godel 7y ago
        Agreed. The first source cites his own talk: https://www.youtube.com/watch?v=PBTr9iQQuq4 https://www.youtube.com/watch?v=PBTr9iQQuq4, in which he starts out with the disclaimer: > It [his cure for Alzheimer's] isn't a proven reality so if you're looking for double-blind clinical studies of this you're gonna be disappointed. But if you're willing to suspend your disbelief and try something as simple as giving your family member without Alzheimer's disease something like coconut oil and B-complex vitamins and see if it works, you may be very pleased. Suspending disbelief should not be a requirement to make a persuasive argument about a scientific subject. This guy just smacks of snake oil salesman through and through.
- darkerside 7y ago
  Hard disagree. Science is great, but logic is greater.
zby 7y ago
From another Hacker News discussion: "One common theme in the chronic Lyme communities is that people who go into remission tend to attribute their response to whatever technique, supplement, or medication they were trying at the time." https://news.ycombinator.com/item?id=21707343 https://news.ycombinator.com/item?id=21707343 Once people form a community around a particular therapy the community will never admit that the therapy was wrong. On the other hand https://equilibriabook.com/ https://equilibriabook.com/ gives shocking examples of how the medical establishment was wrong even though all the information was available and an individual could do much better not following mainstream medical advice. That can happen when the incentives in the research institutions are misaligned. This is a subject I also put a lot of thinking into recently:https://medium.com/@zby/rational-patient-community-6d3617dffcfe https://medium.com/@zby/rational-patient-community-6d3617dff...

internet_user 7y ago

Lyme? You were able to clear long-term post-lyme with i.v. abx? I am interested to hear what you have to say.

wavepruner 7y ago
Lyme may be a complicating factor, but I do not believe it is the root cause. I won't go into details because it will just invite more down votes. You can look at my older posts if you really want to know more. I talked about it a bit when I first created this account.
- a1369209993 7y ago
  > I won't go into details because it will just invite more down votes. I'd just like to clairify that I downvoted because of the lack of details, not their presence.
Aqueous 7y ago
i was able to clear it with long term abx but they were not iv - iv exacerbates matters for me (still not sure how). the cocktail that worked for me was long term Biaxin (claritbromycin) accompanied by Plaquenil (hydroxychloroquine). i have gotten better from severe neurocognitive Lyme (encephalopathy) from this cocktail twice now, and the one time i went off of it i relapsed within 1 - 2 months. i can’t explai. why it works, but i am fairly good evidence that it does. sadly there is still a lot of hostility to even this treatment due to hesitation around long-term antibiotics, and recovery takes months - making it difficult to observe. and i think only a few doctors are aware of it as an option.

OGWhales 7y ago

Care to share further? You have sparked my curiosity.

umvi 7y ago
It's probably one of those illnesses like cluster headaches that can be treated with a currently-illegal drug like psychedelic mushrooms.
- wayoutthere 7y ago
  Ketamine works wonders for them too. Clinical trials are happening for mushrooms as well.
  - OGWhales 7y ago
    Ketamine is already used medically, correct? I'd imagine that would be easier to push/study because of that. Still super glad to see psychs being studied. It always frustrated me that due to scheduling in the US it was much harder to study them.
    - wayoutthere 7y ago
      Yeah, ketamine is used as a sedative and painkiller in people who don't tolerate opioids. It's used off-label in low doses for treatment of depression and chronic migraines -- though is almost always administered by a doctor in a structured theraputic regimen. The success of an approved drug like ketamine in treating depression and chronic migraines has opened the doors for studying other hallucinogens.
wavepruner 7y ago
Going into details will just invite more down votes. You can look through my older posts if you really want to know. I talked about it a bit when I first created this account.
- 7y ago

patmcc 7y ago

How does the medical establishment benefit from not curing your illness?

grzm 7y ago
By being able to charge for ongoing treatment.
wavepruner 7y ago
I don't think they benefit. It's just a complicated issue and change takes time.
internet_user 7y ago
The benefit is in punting off complicated case quicker, because the insurance pay out is the same, regardless if you spend 30 seconds or 30 minutes on the patient. There is often nothing you can do to help anyway, but you can certainly bill 250 bucks every 5 minutes, and many, many do so. In fact, some physicians will not even accept complicated cases, especially if they involve chronic pain treated with opiates, thanks to the hysteria around overdoses today. And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals.
- monadgonad 7y ago
  > And that is the reason why universal healthcare will fail, and why the NHS has a private tier, and routinely pays for treatments outside of the UK, done in private hospitals. This does not logically follow from what you said at all. The NHS has not "failed", nor does it have a private tier - it commissions some treatments from private clinics for purely political reasons. These treatments are still completely free to the patient. An NHS hospital isn't receiving insurance payouts, so it has an incentive to treat people quickly and efficiently, with complete cures being preferred over long-term management when possible.
  - internet_user 7y ago

crimsonalucard 7y ago

I don't blame it on science. The principles of science are deliberately invented to get around this problem. Blame it on human behavior. It's unfortunate to say that the very tenants science tries to eliminate are actually normal parts of human behavior. Our actions, logic and reasoning are dominated by emotion and an attempt to hold onto power. Status seeking and religious bias are normal parts of human behavior. The irony of it all is that we hate this type of behavior but are seduced by it nonetheless. A good analogy is the Dark side of the force. One thing I've seen people fall for is that they think they're immune to this bias by being aware that it exists. Nothing is further from the truth. We are all victims of bias and we are all not immune because to be biased is to be human.