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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
Tufted Titmouse
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21 Nov 2021, 5:26 pm

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?



Cunfuzed
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21 Nov 2021, 9:30 pm

I have a few ideas on what may improve the chances of improving our chances for overall health. They involve either getting the government to do kind of like Mexico did and make it where you can buy anything not in the controlled substance list without a prescription or starting some added competition to doctors from street dealers.

I Think I figured out some added treatment options for autism and how to fix the leaky gut problem and a few others, but the problem is that doctors are making too much money off of us to try to fix us the way I've figured out is the best way, especially since they only want to treat the specific symptoms and not treat the underlying causes.

Opening up pharmacies to give anything the way mexico does atleast for anything you want except for a controlled substance without a prescription or putting the problem on street dealers to start selling non-controlled substances would create competition against doctors since drug dealers hate competition.



carlos55
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22 Nov 2021, 3:48 pm

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.


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"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


Cunfuzed
Tufted Titmouse
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22 Nov 2021, 7:06 pm

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.


Can only speak of what works on myself, I am running into a difficult time getting my doctors to even consider it because it takes all money away from the, getting to do anything but evaluate the solution, but might provide a better direction than anything else that hasn't worked as well if you want me to post ,y research paper including what appears to be another pharmaceutical company foul up besides the same arguments about vaccines that appears to be causing autism.



carlos55
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23 Nov 2021, 2:29 am

Cunfuzed 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.


Can only speak of what works on myself, I am running into a difficult time getting my doctors to even consider it because it takes all money away from the, getting to do anything but evaluate the solution, but might provide a better direction than anything else that hasn't worked as well if you want me to post ,y research paper including what appears to be another pharmaceutical company foul up besides the same arguments about vaccines that appears to be causing autism.


So what works for you?

Personally I’ve tried a few things creatine was the most effective for a short time but now is not working at all.

Other stuff just gave me panic attacks and made my anxiety worse, but it’s difficult to get hold of prescription drugs in the UK anyway without dr approval, there’s the internet of course but it’s full of scam sites selling fake things made in China.


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- George Bernie Shaw


Cunfuzed
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25 Nov 2021, 3:01 pm

carlos55 wrote:
Cunfuzed 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.


Can only speak of what works on myself, I am running into a difficult time getting my doctors to even consider it because it takes all money away from the, getting to do anything but evaluate the solution, but might provide a better direction than anything else that hasn't worked as well if you want me to post ,y research paper including what appears to be another pharmaceutical company foul up besides the same arguments about vaccines that appears to be causing autism.


So what works for you?

Personally I’ve tried a few things creatine was the most effective for a short time but now is not working at all.

Other stuff just gave me panic attacks and made my anxiety worse, but it’s difficult to get hold of prescription drugs in the UK anyway without dr approval, there’s the internet of course but it’s full of scam sites selling fake things made in China.


Based on my research, massive amounts of BS to your healthcare providers, I've tried relentlessly discussing several over the counter options openly, and my doctors are refusing to discuss options to fix the problems with over the counter or single treatment remedies.

When you start to get into that repetitive same meal every day that makes your guts start to leak, I've found 3 over the counter fixes and also several other options, but my doctors are trying to twist my arm to talk prescription only fixes.



AnomalousAspergian
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25 Nov 2021, 6:30 pm

Are all the people on this threat from the US? How on earth do you treat autism? Do you mean to say the cormobidities can be treated like, for example, anxiety and depression?



Fnord
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25 Nov 2021, 8:11 pm

Cunfuzed wrote:
I came up with a few interesting findings about treating autism but am having trouble getting some open discussion about them because...
Because you likely have little or no relevant training as a mental-health professional, as a medical professional of any kind, or as a degreed professional in any of the life sciences.



ASPartOfMe
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26 Nov 2021, 5:58 am

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.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


carlos55
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26 Nov 2021, 7:51 am

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.


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- George Bernie Shaw


Shy_Aspergers_Lady
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26 Nov 2021, 8:05 am

I hate to be the bearer of bad news, but I don't think anyone can cure autism. It's something we're born with. If the world can't accept us for what we are, then they're just going to have to live with the fact. There is no "Cure".



Fnord
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26 Nov 2021, 10:50 am

Shy_Aspergers_Lady wrote:
I hate to be the bearer of bad news, but I don't think anyone can cure autism. It's something we're born with. If the world can't accept us for what we are, then they're just going to have to live with the fact. There is no "Cure".
You were the first person to mention the word "cure" in this thread, when the topic is on "treatment".

Please stay on topic.



carlos55
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26 Nov 2021, 3:45 pm

Bumetanide, folinic acid, carnitine, NAC & Atorvastatin and a few more i`ve read can possibly help certain autism sub types.

So Dr`s should allow people access to these for example to see if it has a positive effect on them.

They already take this approach with psychiatric drugs, if a patient has a negative effect they move onto another one.


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- George Bernie Shaw


ASPartOfMe
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27 Nov 2021, 1:08 am

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.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Cunfuzed
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27 Nov 2021, 5:15 pm

Fnord 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...
Because you likely have little or no relevant training as a mental-health professional, as a medical professional of any kind, or as a degreed professional in any of the life sciences.


By little training, you mean little in terms of the fact that I never graduated med school with a piece of paper, and only took up reading medical books in my free time and managed to make observations while inside the doctors offices over the years that many wouldn't think of then managed to experiment on myself a few times successfully against doctors orders?



katzhutte
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27 Nov 2021, 5:21 pm

Not interested in treating my autism , you can treat my comorbids anytime you want.