article about Bumentanide as a possible cure for Autism

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B19
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11 Jun 2014, 5:18 pm

I would say yes, or at least limit your alcohol intake to minimal that day, until you have established your own baseline so you learn how it affects your functioning and interacts with GABA for you. Taken to extremes, taking GABA and then going on a drinking binge could, IMHO, be very dangerous, particularly if you are driving. Safety first...



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11 Jun 2014, 5:32 pm

B19 wrote:
I would say yes, or at least limit your alcohol intake to minimal that day, until you have established your own baseline so you learn how it affects your functioning and interacts with GABA for you. Taken to extremes, taking GABA and then going on a drinking binge could, IMHO, be very dangerous, particularly if you are driving. Safety first...


I don't drive, and I'm a lightweight anyway so theoretically if I were driving, I wouldn't drink anything at all.



B19
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11 Jun 2014, 5:43 pm

Good for you. Please let me know how your trial goes, if you proceed with it. I started with 500mg 3 times a day. You can take more, though this level worked for me so I stayed with it.



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11 Jun 2014, 6:36 pm

B19 wrote:
Shep wrote:
Am I the only one here that feels like we don't need to be cured? I mean, "cure" means something can be "fixed" and is broken if left alone. I love who I am, I'm not broken, I don't need to be "cured", and refuse to try any "fix". I can see if this were a treatment rather than a flat-out cure, but this is Autism Speaks we're talking about, the same asswipes that compared Autism to Cancer. What am I missing? :duh:

PLEASE let's not let this thread turn into another pro/anti cure debate, there are already plenty of those :(I am not talking about cure, I don't want a "cure" either. What GABA has done for me is to alleviate the handicapping factors of my ASD existence. It enables me to function as the best version of my self.


Hi B19, I'm a little confused - if the bolded part is true, how have you not been cured? Isn't that kind of just semantics? I'm not really into this cure/anti cure fight, I'm just trying to figure out exactly what you are saying. What has it helped with and what is the same? Thanks.



Last edited by wozeree on 11 Jun 2014, 7:50 pm, edited 1 time in total.

B19
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11 Jun 2014, 7:02 pm

I still have hypersensory stuff - loud noises, exposure to cold weather, can't stand "scratchy" clothes, discordant music, loud screechy voices all disturb me physically and neurologically.

I still tend to get a bit obsessive (some of you here might have noticed!) about topics of particular interest to me. I'm still very literal. Residual dyslexia (though vastly improved).

What I DON't have anymore (not mentioned before) is social anxiety. I can hold my own in discussions with NTs, so that both they and I enjoy the encounter.

I think I will always have my most positive ASD traits: a respect for truth (rather than fashionable trends and I have very low tolerance for BS); a love of learning; creativity (only know I am in control of it rather than feeling controlled by it). A need for periods of solitude.

I went from being a "broken down old nag" to a "functioning thoroughbred racehorse" on GABA. It not only transformed my ability to live my life. It probably saved my life. And the severe bouts of depression I suffered from for 50 years have vanished. But I am still a person who is an ASD person and I always will be.



Shep
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11 Jun 2014, 7:25 pm

B19 wrote:
PLEASE let's not let this thread turn into another pro/anti cure debate, there are already plenty of those :( I am not talking about cure, I don't want a "cure" either.
Did you read the thread title? It's titled "article about Bumentanide as a possible cure for Autism", note the underline. So yes, a "cure" is the current topic of discussion here.

B19 wrote:
What GABA has done for me is to alleviate the handicapping factors of my ASD existence. It enables me to function as the best version of my self.
That is a treatment, not a cure. Don't get me wrong, I'm all for treatments (Prozac has done wonders for me personally), but a cure is a whole different ballgame. Medication is inherently a treatment unless it is specifically designed to be taken for limited periods of time (think decongestant). As long as you need to keep taking it in order for it to work, that is a treatment, not a cure.



B19
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11 Jun 2014, 7:44 pm

Of course I read the thread title. Unlike you, though, I chose to focus on the relationship to GABA, not cure.

I dislike the ideology of Autism Speaks too. This article is quoted by them, framed of course in terms of their ideology. I put the ideology aside and related it to the extensive research I have done on GABA and autism (which have nothing to do with Autism Speaks). I don't think that is inappropriate to the thread. You do, apparently, well that's ok, we can agree to disagree eh?



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11 Jun 2014, 7:46 pm

When I started this thread I definitely did not want it to become a pro/anti cure debate either. So yes, let's not make it that please. I respect anyone who wants a cure and anyone who does not. I just wanted to make you all aware of this article because I have never heard of this drug before the other day and I thought it was very interesting and worth knowing about and I thought you all would find it interesting as well.


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Ann2011
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11 Jun 2014, 7:57 pm

Well I think the study is flawed. From the get go. They are trying to create autism in rodents so they can cure it. How can they accurately do that when we don't know the cause of autism?



B19
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11 Jun 2014, 8:05 pm

I agree there are concerns about this particular study, there are much better ones dealing with GABA and autism, some of which are very solid in design, methodology and execution.



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11 Jun 2014, 8:28 pm

B19 wrote:
Shep wrote:
Am I the only one here that feels like we don't need to be cured? I mean, "cure" means something can be "fixed" and is broken if left alone. I love who I am, I'm not broken, I don't need to be "cured", and refuse to try any "fix". I can see if this were a treatment rather than a flat-out cure, but this is Autism Speaks we're talking about, the same asswipes that compared Autism to Cancer. What am I missing? :duh:

PLEASE let's not let this thread turn into another pro/anti cure debate, there are already plenty of those :(I am not talking about cure, I don't want a "cure" either. What GABA has done for me is to alleviate the handicapping factors of my ASD existence. It enables me to function as the best version of my self.

Same here, my friend...same here.

A couple of days ago, I made a thread about Pregabalin (Lyrica) and it's off-label treatment for Asperger's Disorder (even though the off-label conditions for treatment are Fibromyalgia, Anxiety and Neuropathic pain).

In Australia, it is only used for Epilepsy and the pain of Herpes. Something to do with Pfizer (the drug's manufacturer) being sued for millions of dollars for false advertising when clinical trials were inconclusive.

Pregabalin is similar to Gabapentin, a synthesised form of GABA and I was on a course of it last year when I had Shingles and found out then what it could do for my Asperger's...it also made me relate all my conditions together (Asperger's, Fibromyalgia, TMJD, Rheumatoid Arthritis, Neuralgia) and I could see this definite link between Autism and Central Nervous System dysfunction (caused by an imbalance of Neurotransmitter substances) standing out like a red flag.

I first went through the Nicotinic Acetylcholine pathways (Acetylcholine is required in the formation of GABA) and I found that in the brain tissue of Autistic adults, the Acetylcholine receptor sites are 'deformed/malformed' and don't function properly, especially the Alpha7 NACH receptor site and that leads to the cognitive and social problems those with ASD experience. I am still bogging through how GABA influences the Calcium Voltage Gate, when a lot of the problems are due to the transference of Sodium ions...but I am getting there.

I can understand how a diuretic drug may increase/decrease the concentration of Sodium and Potassium ions across the synapses and that's a very good angle to explore as well (I'll do so after this).

Anyway, I know I am totally deficient in ACH after years of cannabis abuse and also what that did to my internal brain chemistry (besides totally screwing it up). lol

I am now able to make the whole chemical correlation between THC withdrawals, 'FibroFog', Epilepsy and ASD by how our 'deranged' neurones synthesise ACH to produce GABA.

It's an interesting ride, isn't it?



B19
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11 Jun 2014, 9:20 pm

Yes! Acetylcholine is definitely part of the puzzle, your post is of great interest to me.

Acetylcholine controls the speed of the function of the brain by determining the rate at which electrical signals are processed throughout the body, so it connects physical states with memories, thoughts and perceptions. In brain scans, acetylcholine shows up as alpha waves (the relaxed mode).

Deficiency occurs when you are either burning too much acetylcholine or not producing enough; it regulates the ability to process sensory input (ding ding, recognition...)

One sign of an acetylcholine deficiency is a craving for fatty foods. This was certainly true for me.

In terms of the overall puzzle which you and I are so interested in (it's very exciting), the key element seems to be getting these four particular neurotransmitters into balance: dopamine, gaba, acetylcholine, and serotonin. It's like a game of dominoes: line them all up properly, they stand; if one is deficient, then they all fall down and the pattern is disrupted.

But there appears to be innate tendencies on an individual basis which are genetically determined: people are born deficient in one, two, three, or all of these, or none of them (the last being the really lucky ones in the genetic draw). The good news: the levels of each can be manipulated with supplementation, diet, trial and error with dosages, and knowledge.

Acetylcholine is made from choline; choline is in egg yolk, meat, natural foods with a high fat content. Beef liver is very high in it (if you can stand the stuff!)

I don't think I was ever very deficient in it, as I naturally like the foods that choline occurs in. It was GABA that was the particularly extreme deficiency for me. And it's much harder to remedy a severe GABA deficiency with food alone.

It interests me that there is quite a lot of resistance to the idea that regulation of the neurotransmitters could offer a lot of ASD people immense relief, that there is a preference for prescription psychiatric drugs like SSRIs, which have so many negative side effects. Possibly the knowledge about supplementing with GABA etc is suppressed somewhat by the profession and companies that stand to lose the most in profits if it became more widely known that there are these powerful alternatives which are pretty much readily available to anyone.

However I don't want to get lost in a discussion about the evils of Big Pharma. It is what it is.



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11 Jun 2014, 9:38 pm

B19 wrote:
Yes! Acetylcholine is definitely part of the puzzle, your post is of great interest to me.

Acetylcholine controls the speed of the function of the brain by determining the rate at which electrical signals are processed throughout the body, so it connects physical states with memories, thoughts and perceptions. In brain scans, acetylcholine shows up as alpha waves (the relaxed mode).

Deficiency occurs when you are either burning too much acetylcholine or not producing enough; it regulates the ability to process sensory input (ding ding, recognition...)

One sign of an acetylcholine deficiency is a craving for fatty foods. This was certainly true for me.

In terms of the overall puzzle which you and I are so interested in (it's very exciting), the key element seems to be getting these four particular neurotransmitters into balance: dopamine, gaba, acetylcholine, and serotonin. It's like a game of dominoes: line them all up properly, they stand; if one is deficient, then they all fall down and the pattern is disrupted.

But there appears to be innate tendencies on an individual basis which are genetically determined: people are born deficient in one, two, three, or all of these, or none of them (the last being the really lucky ones in the genetic draw). The good news: the levels of each can be manipulated with supplementation, diet, trial and error with dosages, and knowledge.

Acetylcholine is made from choline; choline is in egg yolk, meat, natural foods with a high fat content. Beef liver is very high in it (if you can stand the stuff!)

I don't think I was ever very deficient in it, as I naturally like the foods that choline occurs in. It was GABA that was the particularly extreme deficiency for me. And it's much harder to remedy a severe GABA deficiency with food alone.

It interests me that there is quite a lot of resistance to the idea that regulation of the neurotransmitters could offer a lot of ASD people immense relief, that there is a preference for prescription psychiatric drugs like SSRIs, which have so many negative side effects. Possibly the knowledge about supplementing with GABA etc is suppressed somewhat by the profession and companies that stand to lose the most in profits if it became more widely known that there are these powerful alternatives which are pretty much readily available to anyone.

However I don't want to get lost in a discussion about the evils of Big Pharma. It is what it is.

*like button

You are spot-on with your synopsis.

One of the main problems in consuming fats, beef liver, dairy and high gluten products, is they are all high in an Amino Acid called L-Glutamate.

L-Glutamate is an Amino Acid necessary for the formation of GABA (Neurotransmitters are proteins after all)...now, what if, just what if our bodies cannot absorb/synthesise L-Glutamate to form GABA, in much the same way as Diabetics cannot digest sugar?

Where does all that spare L-Glutamate go? It goes to overexite all of our other synapses and neurones is where it all goes!

Have I got your attention yet? lol

So, what if it's the 'L-Glutamate switch' and not the 'Oxytocin switch'?

Although, corelating the rise in ASD with bottle-fed babies is an avenue I may now look into, apart from overall dietary trends within the past 50 years.



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11 Jun 2014, 10:04 pm

I don't take Glutamine as a precursor to GABA. I do take some of the following.

Here is a list of established GABA boosters:

Inisotol (activates GABA)
GABA (comes in both synthetic and natural forms)
Glutamic acid
Melatonin
Thiamine
Niacinamide
Pyridoxine
Valerian root
Passionflower

In terms of psychiatric drugs, Clonazepam.

I take Inisotol/choline (with food, that's important) now as well as GABA.

Can't answer your riddle at present in any comprehensive way, though I keep working on these fascinating puzzles and hope to discover more about the pathways in due course.

So glad to have made contact with you!! !



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11 Jun 2014, 10:18 pm

B19 wrote:
I don't take Glutamine as a precursor to GABA. I do take some of the following.

Here is a list of established GABA boosters:

Inisotol (activates GABA)
GABA (comes in both synthetic and natural forms)
Glutamic acid
Melatonin
Thiamine
Niacinamide
Pyridoxine
Valerian root
Passionflower

In terms of psychiatric drugs, Clonazepam.

I take Inisotol/choline (with food, that's important) now as well as GABA.

Can't answer your riddle at present in any comprehensive way, though I keep working on these fascinating puzzles and hope to discover more about the pathways in due course.

So glad to have made contact with you!! !

*stuying the molecular structure of Clonazepam right now.....

I am glad to have met you too, as the above is also very helpful to me and I thank you for all that practical information:

**starts Inisotol Choline supplements forthwith.

Also, because I have a very strong reaction to sunlight and try to avoid it, last blood test, I had a slight (but not worrying) deficiency in Vitamin D ('also see; Melatonin').

Vitamin D is necessary to synthesise Calcium in the body and those who lack exposure to the sun or who are not getting enough Vitamin D in their diets, won't be able to make Calcium, Melatonin and all that.

***goes and sees how this all relates back to the Calcium Gate Inhibitors (of which GABA is one).

This is why, I guess, they say a good dose of sunlight can ease off Fibromyalgia symptoms for a week or so and Vitamin D is also known as a 'cure-all' in this department...

....and how many of us are going to go out in a bikini on a beach and sunbathe volutarily without worrying about dying from skin cancer in Australia, seriously!

...but Vitamin D is another thing to consider here anyway.



B19
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11 Jun 2014, 10:27 pm

If you are ever crossing the ditch to Auckland, feel very welcome to PM me, we can meet up for lunch and talk about these matters of mutual interest until the cows come home (and probably until they go out again, lol).

Here's a little study you may find interesting too, easily found on Google:

"Imaging shows low levels of GABA in autism" (2013).

It's more accessible to people who don't have much knowledge of the field (though you are obviously not one of them) so I share it with them if they are interested in learning more.