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Anyone up for new ideas to improve treatment options?
Yes, I want to improve my chances of surviving by more treatment options 100%  100%  [ 5 ]
No, I think I have a good doctor and don't want to affect their ability to pay off their student loans 0%  0%  [ 0 ]
Total votes : 5

Cunfuzed
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27 Nov 2021, 5:27 pm

ASPartOfMe wrote:
carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
Sounds a good idea, the issue is autism is heterogeneous, so what may work on someone may not work on another person, which is why autism research is such a mess, because the bar for anything to be seen to work, has to work on all autistic people, or it statistically fails to hit the mark.

From someone like Anthony Hopkins to the man with the living skills of a 3-year-old in a care home, when its obvious to anyone with half a brain they both have very different conditions.

It’s a bit like saying we`ll diagnose everyone with a cough with COVID, from someone with lung cancer, dust allergy to covid itself and get 200 of these people with these diverse conditions into a drug trial and every treatment tested has to be seen to be statistically working for all.

Its insanely stupid but sadly where we are at, until they can subdivide people into the various causes and trial things with these clusters.

But in the mean time if a scientific paper shows a meaningful improvement on some autistic people with an existing drug, then yes, an adult should be allowed to trial it on themselves.

We diagnose people with radically different amounts of impairments with the same name all the time. A person with stage 0 cancer may be treated by watching and waiting, other cancers are treated with a regimen of toxic drugs and radiation. We still call it cancer, or burns. Problem with autism not enough is known yet to create the accurate subcategories these other conditions are diagnosed with.

A cough is a poor analogy because it is a symptom not a condition in its own right.


Cancer and it’s various types is isolated and identified, neither is true for autism making it a symptom rather than a condition similar to paralysis.

Someone may be paralyzed from Motor Neuron Disease or from an accident like a motor bike crash. They may have a spectrum of paralysis as well maybe being able to move their toes but not walk for example.

I’ve said previously on this site autism is just a 1940s medical parking space for something science didn’t and still doesn’t understand rather than a diagnosis by itself. This is because there appears many types of autism’s, the autism of Anthony Hopkins or Elon musk is very different from that of the ID adult in a care home.

The genetic and environmental triggers are likely to be very different along with the symptoms making them different conditions with some overlap on symptoms.

I also believe Cunfuzed was referring to access to tested drugs that appear to work with some autistic people with a dr oversight rather than a free for all self experimentation.

To be diagnosed with autism like cancer you to have a constellation of core symptoms although they can vary greatly in severity and presentation.

As said the difference is we don't know if Autism is one condition with a lot of subcategories or different conditions altogether. This is the issue with a subjective diagnoses based on observed behaviors. Maybe there is something physical that can be picked up yet to be discovered. They are trying genes but that is proving very complicated, maybe through brain imaging this can be figured out, maybe not.


There probably is something genetic that can be identified, but in forms of treatment, I may know of a certain pharmaceutical company with information your doctors won't want you to know about with all the questions around the leaky gut and what have you. Do you want me to elaborate?



carlos55
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28 Nov 2021, 3:00 pm

Cunfuzed wrote:
ASPartOfMe wrote:
carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
Sounds a good idea, the issue is autism is heterogeneous, so what may work on someone may not work on another person, which is why autism research is such a mess, because the bar for anything to be seen to work, has to work on all autistic people, or it statistically fails to hit the mark.

From someone like Anthony Hopkins to the man with the living skills of a 3-year-old in a care home, when its obvious to anyone with half a brain they both have very different conditions.

It’s a bit like saying we`ll diagnose everyone with a cough with COVID, from someone with lung cancer, dust allergy to covid itself and get 200 of these people with these diverse conditions into a drug trial and every treatment tested has to be seen to be statistically working for all.

Its insanely stupid but sadly where we are at, until they can subdivide people into the various causes and trial things with these clusters.

But in the mean time if a scientific paper shows a meaningful improvement on some autistic people with an existing drug, then yes, an adult should be allowed to trial it on themselves.

We diagnose people with radically different amounts of impairments with the same name all the time. A person with stage 0 cancer may be treated by watching and waiting, other cancers are treated with a regimen of toxic drugs and radiation. We still call it cancer, or burns. Problem with autism not enough is known yet to create the accurate subcategories these other conditions are diagnosed with.

A cough is a poor analogy because it is a symptom not a condition in its own right.


Cancer and it’s various types is isolated and identified, neither is true for autism making it a symptom rather than a condition similar to paralysis.

Someone may be paralyzed from Motor Neuron Disease or from an accident like a motor bike crash. They may have a spectrum of paralysis as well maybe being able to move their toes but not walk for example.

I’ve said previously on this site autism is just a 1940s medical parking space for something science didn’t and still doesn’t understand rather than a diagnosis by itself. This is because there appears many types of autism’s, the autism of Anthony Hopkins or Elon musk is very different from that of the ID adult in a care home.

The genetic and environmental triggers are likely to be very different along with the symptoms making them different conditions with some overlap on symptoms.

I also believe Cunfuzed was referring to access to tested drugs that appear to work with some autistic people with a dr oversight rather than a free for all self experimentation.

To be diagnosed with autism like cancer you to have a constellation of core symptoms although they can vary greatly in severity and presentation.

As said the difference is we don't know if Autism is one condition with a lot of subcategories or different conditions altogether. This is the issue with a subjective diagnoses based on observed behaviors. Maybe there is something physical that can be picked up yet to be discovered. They are trying genes but that is proving very complicated, maybe through brain imaging this can be figured out, maybe not.


There probably is something genetic that can be identified, but in forms of treatment, I may know of a certain pharmaceutical company with information your doctors won't want you to know about with all the questions around the leaky gut and what have you. Do you want me to elaborate?


Why not - yes please tell all


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- George Bernie Shaw


Cunfuzed
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28 Nov 2021, 8:48 pm

carlos55 wrote:
Cunfuzed wrote:
ASPartOfMe wrote:
carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
Sounds a good idea, the issue is autism is heterogeneous, so what may work on someone may not work on another person, which is why autism research is such a mess, because the bar for anything to be seen to work, has to work on all autistic people, or it statistically fails to hit the mark.

From someone like Anthony Hopkins to the man with the living skills of a 3-year-old in a care home, when its obvious to anyone with half a brain they both have very different conditions.

It’s a bit like saying we`ll diagnose everyone with a cough with COVID, from someone with lung cancer, dust allergy to covid itself and get 200 of these people with these diverse conditions into a drug trial and every treatment tested has to be seen to be statistically working for all.

Its insanely stupid but sadly where we are at, until they can subdivide people into the various causes and trial things with these clusters.

But in the mean time if a scientific paper shows a meaningful improvement on some autistic people with an existing drug, then yes, an adult should be allowed to trial it on themselves.

We diagnose people with radically different amounts of impairments with the same name all the time. A person with stage 0 cancer may be treated by watching and waiting, other cancers are treated with a regimen of toxic drugs and radiation. We still call it cancer, or burns. Problem with autism not enough is known yet to create the accurate subcategories these other conditions are diagnosed with.

A cough is a poor analogy because it is a symptom not a condition in its own right.


Cancer and it’s various types is isolated and identified, neither is true for autism making it a symptom rather than a condition similar to paralysis.

Someone may be paralyzed from Motor Neuron Disease or from an accident like a motor bike crash. They may have a spectrum of paralysis as well maybe being able to move their toes but not walk for example.

I’ve said previously on this site autism is just a 1940s medical parking space for something science didn’t and still doesn’t understand rather than a diagnosis by itself. This is because there appears many types of autism’s, the autism of Anthony Hopkins or Elon musk is very different from that of the ID adult in a care home.

The genetic and environmental triggers are likely to be very different along with the symptoms making them different conditions with some overlap on symptoms.

I also believe Cunfuzed was referring to access to tested drugs that appear to work with some autistic people with a dr oversight rather than a free for all self experimentation.

To be diagnosed with autism like cancer you to have a constellation of core symptoms although they can vary greatly in severity and presentation.

As said the difference is we don't know if Autism is one condition with a lot of subcategories or different conditions altogether. This is the issue with a subjective diagnoses based on observed behaviors. Maybe there is something physical that can be picked up yet to be discovered. They are trying genes but that is proving very complicated, maybe through brain imaging this can be figured out, maybe not.


There probably is something genetic that can be identified, but in forms of treatment, I may know of a certain pharmaceutical company with information your doctors won't want you to know about with all the questions around the leaky gut and what have you. Do you want me to elaborate?


Why not - yes please tell all


After having things turn into a bit of nerve damage, victimize a few foods high in cholesterol right before going to the doctor, the statins will help treat something they can actually find wrong with you after you find an herbal remedy to relieve the nerve damage. After you get a statin, don't continue the high cholesterol diet go back to eating anything but those foods and don't let them change your medicine either. Once the main medicine is switched, it loses the benefit.



Fnord
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29 Nov 2021, 9:41 am

Cunfuzed wrote:
After having things turn into a bit of nerve damage, victimize a few foods high in cholesterol right before going to the doctor, the statins will help treat something they can actually find wrong with you after you find an herbal remedy to relieve the nerve damage. After you get a statin, don't continue the high cholesterol diet go back to eating anything but those foods and don't let them change your medicine either. Once the main medicine is switched, it loses the benefit.
This is it?  This is the result of your "research"?

Not a treatment or a cure, but only a way to trick a physician into prescribing you medicine you do not need.

I suspected your "research" was not legit all along.


:roll:



carlos55
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29 Nov 2021, 11:35 am

Cunfuzed wrote:
carlos55 wrote:
Cunfuzed wrote:
ASPartOfMe wrote:
carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
Sounds a good idea, the issue is autism is heterogeneous, so what may work on someone may not work on another person, which is why autism research is such a mess, because the bar for anything to be seen to work, has to work on all autistic people, or it statistically fails to hit the mark.

From someone like Anthony Hopkins to the man with the living skills of a 3-year-old in a care home, when its obvious to anyone with half a brain they both have very different conditions.

It’s a bit like saying we`ll diagnose everyone with a cough with COVID, from someone with lung cancer, dust allergy to covid itself and get 200 of these people with these diverse conditions into a drug trial and every treatment tested has to be seen to be statistically working for all.

Its insanely stupid but sadly where we are at, until they can subdivide people into the various causes and trial things with these clusters.

But in the mean time if a scientific paper shows a meaningful improvement on some autistic people with an existing drug, then yes, an adult should be allowed to trial it on themselves.

We diagnose people with radically different amounts of impairments with the same name all the time. A person with stage 0 cancer may be treated by watching and waiting, other cancers are treated with a regimen of toxic drugs and radiation. We still call it cancer, or burns. Problem with autism not enough is known yet to create the accurate subcategories these other conditions are diagnosed with.

A cough is a poor analogy because it is a symptom not a condition in its own right.


Cancer and it’s various types is isolated and identified, neither is true for autism making it a symptom rather than a condition similar to paralysis.

Someone may be paralyzed from Motor Neuron Disease or from an accident like a motor bike crash. They may have a spectrum of paralysis as well maybe being able to move their toes but not walk for example.

I’ve said previously on this site autism is just a 1940s medical parking space for something science didn’t and still doesn’t understand rather than a diagnosis by itself. This is because there appears many types of autism’s, the autism of Anthony Hopkins or Elon musk is very different from that of the ID adult in a care home.

The genetic and environmental triggers are likely to be very different along with the symptoms making them different conditions with some overlap on symptoms.

I also believe Cunfuzed was referring to access to tested drugs that appear to work with some autistic people with a dr oversight rather than a free for all self experimentation.

To be diagnosed with autism like cancer you to have a constellation of core symptoms although they can vary greatly in severity and presentation.

As said the difference is we don't know if Autism is one condition with a lot of subcategories or different conditions altogether. This is the issue with a subjective diagnoses based on observed behaviors. Maybe there is something physical that can be picked up yet to be discovered. They are trying genes but that is proving very complicated, maybe through brain imaging this can be figured out, maybe not.


There probably is something genetic that can be identified, but in forms of treatment, I may know of a certain pharmaceutical company with information your doctors won't want you to know about with all the questions around the leaky gut and what have you. Do you want me to elaborate?


Why not - yes please tell all


After having things turn into a bit of nerve damage, victimize a few foods high in cholesterol right before going to the doctor, the statins will help treat something they can actually find wrong with you after you find an herbal remedy to relieve the nerve damage. After you get a statin, don't continue the high cholesterol diet go back to eating anything but those foods and don't let them change your medicine either. Once the main medicine is switched, it loses the benefit.


If it works for you good luck to you, however you may be better just trying the Paleo diet for a little while. May help with stomach issues and supposed to help with epilepsy a common autism co-morbidity.


_________________
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- George Bernie Shaw


Flown
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29 Nov 2021, 11:41 am

Cunfuzed wrote:
I came up with a few interesting findings about treating autism but am having trouble getting some open discussion about them because I think I stumbled on to a few things that may screw up a big profit margin for the medical research and treatment industry, is anyone up for discussing what might actually work and help me push to get them done?


I have no idea what you are asking for or what you mean. I would appreciate clarification.

I'm not sure if you are implying that autism is a treatable "disease" for which you are seeking treatment? Conditions which co-occur with autism can sometimes be treated, but wanting a specific pill to cure/treat a neurotype just isn't possible.


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Fnord
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29 Nov 2021, 12:26 pm

Flown wrote:
Cunfuzed wrote:
I came up with a few interesting findings about treating autism but am having trouble getting some open discussion about them because I think I stumbled on to a few things that may screw up a big profit margin for the medical research and treatment industry, is anyone up for discussing what might actually work and help me push to get them done?
I have no idea what you are asking for or what you mean. I would appreciate clarification.  I'm not sure if you are implying that autism is a treatable "disease" for which you are seeking treatment? Conditions which co-occur with autism can sometimes be treated, but wanting a specific pill to cure/treat a neurotype just isn't possible.
He claims to have performed "research", yet he links to no published research paper(s) of his own.

I am calling his claims bogus.



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29 Nov 2021, 1:26 pm

Fnord wrote:
Cunfuzed wrote:
After having things turn into a bit of nerve damage, victimize a few foods high in cholesterol right before going to the doctor, the statins will help treat something they can actually find wrong with you after you find an herbal remedy to relieve the nerve damage. After you get a statin, don't continue the high cholesterol diet go back to eating anything but those foods and don't let them change your medicine either. Once the main medicine is switched, it loses the benefit.
This is it?  This is the result of your "research"?

Not a treatment or a cure, but only a way to trick a physician into prescribing you medicine you do not need.

I suspected your "research" was not legit all along.


:roll:


This sounds like reckless and likely dangerous advice.


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Cunfuzed
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29 Nov 2021, 8:36 pm

Fnord wrote:
Cunfuzed wrote:
After having things turn into a bit of nerve damage, victimize a few foods high in cholesterol right before going to the doctor, the statins will help treat something they can actually find wrong with you after you find an herbal remedy to relieve the nerve damage. After you get a statin, don't continue the high cholesterol diet go back to eating anything but those foods and don't let them change your medicine either. Once the main medicine is switched, it loses the benefit.
This is it?  This is the result of your "research"?

Not a treatment or a cure, but only a way to trick a physician into prescribing you medicine you do not need.

I suspected your "research" was not legit all along.


:roll:


Research was based on the fact that after reading and experimenting, once the nerve damage develops, you appear to benefit more from a certain side effect of certain medication than from their intended use after the nerve damage arises



Fnord
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29 Nov 2021, 9:14 pm

Cunfuzed wrote:
Research was based on the fact that after reading and experimenting, once the nerve damage develops, you appear to benefit more from a certain side effect of certain medication than from their intended use after the nerve damage arises
Please link to the webpage that features your research paper.



Cunfuzed
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30 Nov 2021, 2:17 am

Fnord wrote:
Cunfuzed wrote:
Research was based on the fact that after reading and experimenting, once the nerve damage develops, you appear to benefit more from a certain side effect of certain medication than from their intended use after the nerve damage arises
Please link to the webpage that features your research paper.


Wasn't just one webpage, had to read through a few hundred pages and also experiment on myself after being hospitalized. I observed that all of the medications I was put on prior to being put in the hospital contained side effects of edema, but were changed and apparently canceled each other out, when I did an experiment and came off everything and tried taking one suspected remedy for a side effect of edema then tried treating a side effect of that medicine with a similar medication with a single dose, it canceled out the side effect and benefit of the medications used to begin with all though my doctors didn't want to talk about them because they weren't prescription options.

You seem pessimistic about my observations, but do you trust a doctor looking to make a paycheck or a person who has been down the same road as many of you people with suffering nerve damage at some point during the course of a condition?