Re: Neuroplasticity - [Was: brain retraining for mcs and more, don't know about effects on mold toxicity]

[Guest guest]

You believe that if brain retraining works it does so because of the

placebo effect. But the placebo effect doesn't last and testimonials

from the Gupta program show lasting effects. Are there any

treatments for MCS that you think actually work? Anne

On Dec 17, 2009, at 8:08 PM, Carl E. Grimes wrote:

> Anne,

>

> I'm far from an expert on neuroplasticity and am not a

> psychologist so my terminology may have been more than a little

> fuzzy.

>

> I realize it is physical but usually not identified as such, more

> often labeled as psychological and that's how most of us

> understand it. So that was my starting point. I didn't have a good

> ending point so here is my attempt...

>

> What is fascinating to me is the interaction between physical

> brain and mental " mind. " As I'm sure you're aware schizophrenia

> used to be a mental condition until they found the physiological

> dynamics (biochemical). Only recently have a few accepted the

> physiological mood altering effects of VOCs on some people.

>

> The latest to be challanged is the placebo effect. If anything is

> " mental " or " psychological " it is the placebo effect where mere

> belief alters reported effects of FDA mandated medical trials, for

> example. If people truly believe they received the real pill rather

> than the sugar pill, then they report they got better and they do

> get better. The purpose of the studies is to demonstrate that the

> improvement is from the medicine rather than the belief that a

> medicine has been taken. So they " blind " the participant and the

> administrator of the drug (double-blind) so neither knows who got

> the real drug and who got the fake drug.

>

> However, big pharma is having extreme difficulty getting many of

> their drugs through the placebo comparison trials. Beneditto in

> Italy tried a different approach, a triple blind if you will.

>

> It seems that even though the participants didn't know if they

> were receiving the drug or the placebo they did know the purpose

> of the study, i.e. a heart medication study or a pain reliver study.

>

> When Beneditto kept them blind to the purpose of the trial then

> even a well known, well tested, and proven pain medication failed

> the placebo even though it has successfully passed it many times

> over the years. Not only did it fail but it failed miserabley.

> Actually,

> it failed totally. It had ZERO effect! No effect on any of the study

> participants if they didn't know the purpose of the study was for a

> pain drug.

>

>

[Guest guest]

I dont really have a fear of or get anixity at the thought of getting a exposure

to something, maybe because I know it's going to happen just about anytime i go

anywhere, more that Im just tired of felling bad and so to avoid felling bad I

try to avoid going places, I'd rather stay home and fell better. sometimes I

just have to get out and suffer.

the anixity type symptoms I can suffer that a exposure to a chemical or

something might cause is not even related to someone that might suffer anixity

for other reasons, the nerve effects and speeding up,

or irregular heart beats that might come along with exposure to something could

possabily be mistaken for anixity type symptoms.

I fell that theres very little with this illness that is psychological, these

effects are physically caused.

I can see how some could

let it get to them in psychological ways, some kill theirselves because they

just cant deal with it, I fell sorry for those that might not ever have a idea

of what is happening to them or why, or dont get any information on how to try

to deal with the illness.

there are times that I get pretty down in the dumps about it all.

but hay, I'm still here and just as bullhead as ever.

+ maybe a little more grouchier. but it wasn't really that long ago that I

sometimes just thought I was going to die, and sometimes thought I wanted to. I

think the most critical time is the first few years after the exposure, or for

some the illness can continue to get much worse if they can't get somewhere

where they get a good level of relief. I dont think I could tolerate someone

liveing with me, even if they had a good understanding of the illness or had it

themself, theres just to many things that even at a very low dose exposure the

longer I'm breathing it the sicker I get. sometimes it's hard to figure out what

it is thats bothering me cause I can't always smell it.

there are things that in very tiny amounts can cause me migranes daily until I

fiqure out what it is and get rid of it.

family can come over thinging that because they cant smell something that I'm

not going to be affected but they have smells on their cloths from other peoples

houses and it can get to me.

lol's , it' not funny but sometimes those smells affect my mood and people take

it personally. they really have a hard time comprehending that it was the smell

makeing get emotional, not them.

>

> Anne,

>

> I'm far from an expert on neuroplasticity and am not a

> psychologist so my terminology may have been more than a little

> fuzzy.

>

> I realize it is physical but usually not identified as such, more

> often labeled as psychological and that's how most of us

> understand it. So that was my starting point. I didn't have a good

> ending point so here is my attempt...

>

> What is fascinating to me is the interaction between physical

> brain and mental " mind. " As I'm sure you're aware schizophrenia

> used to be a mental condition until they found the physiological

> dynamics (biochemical). Only recently have a few accepted the

> physiological mood altering effects of VOCs on some people.

>

> The latest to be challanged is the placebo effect. If anything is

> " mental " or " psychological " it is the placebo effect where mere

> belief alters reported effects of FDA mandated medical trials, for

> example. If people truly believe they received the real pill rather

> than the sugar pill, then they report they got better and they do

> get better. The purpose of the studies is to demonstrate that the

> improvement is from the medicine rather than the belief that a

> medicine has been taken. So they " blind " the participant and the

> administrator of the drug (double-blind) so neither knows who got

> the real drug and who got the fake drug.

>

> However, big pharma is having extreme

[Guest guest]

seems that your brain working around some injuries isn't lasting and isn't quite

as good as before, kind of like if you dont use it you lose it. I used to

remember everything and could vocalize it pretty quick if I needed to, it's like

some bad wiring up there, sometimes it works other times it doesn't.

>

> > Anne,

> >

> > I'm far from an expert on neuroplasticity and am not a

> > psychologist so my terminology may have been more than a little

> > fuzzy.

> >

> > I realize it is physical but usually not identified as such, more

> > often labeled as psychological and that's how most of us

> > understand it. So that was my starting point. I didn't have a good

> > ending point so here is my attempt...

> >

> > What is fascinating to me is the interaction between physical

> > brain and mental " mind. " As I'm sure you're aware schizophrenia

> > used to be a mental condition until they found the physiological

> > dynamics (biochemical). Only recently have a few accepted the

> > physiological mood altering effects of VOCs on some people.

> >

> > The latest to be challanged is the placebo effect. If anything is

> > " mental " or " psychological " it is the placebo effect where mere

> > belief alters reported effects of FDA mandated medical trials, for

> > example. If people truly believe they received the real pill rather

> > than the sugar pill, then they report they got better and they do

> > get better. The purpose of the studies is to demonstrate that the

> > improvement is from the medicine rather than the belief that a

> > medicine has been taken. So they " blind " the participant and the

> > administrator of the drug (double-blind) so neither knows who got

> > the real drug and who got the fake drug.

> >

> > However, big pharma is having extreme difficulty getting many of

> > their drugs through the placebo comparison trials. Beneditto in

> > Italy tried a different approach, a triple blind if you will.

> >

> > It seems that even though the participants didn't know if they

> > were receiving the drug or the placebo they did know the purpose

> > of the study, i.e. a heart medication study or a pain reliver study.

> >

> > When Beneditto kept them blind to the purpose of the trial then

> > even a well known, well tested, and proven pain medication failed

> > the placebo even though it has successfully passed it many times

> > over the years. Not only did it fail but it failed miserabley.

> > Actually,

> > it failed totally. It had ZERO effect! No effect on any of the study

> > participants if they didn't know the purpose of the study was for a

> > pain drug.

> >

> >

>

[Guest guest]

Anne,

Not exactly and certainly not according to current beliefs and

opinions about the placebo effect. It might be more accurate to

say that the placebo effect is really something other than what

most currently believe it to be (mental without physcical basis, in

other words " psychological " ), rather it is physically based on

biochemistry. It may be similar to, or a part of, neuroplasticity, or

something entirely different. No one knows and this is just my

layman's type conjecture based on the information I presented,

nothing authoritative.

As for treatments I think actually work, I don't think there is yet

any specific one because MCS is still a cluster of multiple causes

and effects. A better name might be Chemical Intolerance, which

is what now suggests, or Toxic Encephalopathy

which Angel prefers.

opines a theory called Toxic Induced Loss of Tolerance

(TILT) which is both specific but yet open enough to include the

multiplicity of events and effects. I'll defer to Angel on TE is she

so chooses.

Carl Grimes

Healthy Habitats LLC

-----

You believe that if brain retraining works it does so because of the

placebo effect. But the placebo effect doesn't last and testimonials

from the Gupta program show lasting effects. Are there any

treatments for MCS that you think actually work? Anne

On Dec 17, 2009, at 8:08 PM, Carl E. Grimes wrote:

> Anne,

>

> I'm far from an expert on neuroplasticity and am not a

> psychologist so my terminology may have been more than a little

> fuzzy.

>

> I realize it is physical but usually not identified as such, more

> often labeled as psychological and that's how most of us

> understand it. So that was my starting point. I didn't have a good

> ending point so here is my attempt...

>

> What is fascinating to me is the interaction between physical

> brain and mental " mind. " As I'm sure you're aware schizophrenia

> used to be a mental condition until they found the physiological

> dynamics (biochemical). Only recently have a few accepted the

> physiological mood altering effects of VOCs on some people.

>

> The latest to be challanged is the placebo effect. If anything is

> " mental " or " psychological " it is the placebo effect where mere

> belief alters reported effects of FDA mandated medical trials, for

> example. If people truly believe they received the real pill rather

> than the sugar pill, then they report they got better and they do

> get better. The purpose of the studies is to demonstrate that the

> improvement is from the medicine rather than the belief that a

> medicine has been taken. So they " blind " the participant and the

> administrator of the drug (double-blind) so neither knows who got

> the real drug and who got the fake drug.

>

> However, big pharma is having extreme difficulty getting many of

> their drugs through the placebo comparison trials. Beneditto in

> Italy tried a different approach, a triple blind if you will.

>

> It seems that even though the participants didn't know if they

> were receiving the drug or the placebo they did know the purpose

> of the study, i.e. a heart medication study or a pain reliver study.

>

> When Beneditto kept them blind to the purpose of the trial then

> even a well known, well tested, and proven pain medication failed

> the placebo even though it has successfully passed it many times

> over the years. Not only did it fail but it failed miserabley.

> Actually,

> it failed totally. It had ZERO effect! No effect on any of the study

> participants if they didn't know the purpose of the study was for a

> pain drug.

>

>

----------

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[Guest guest]

Carl,

I think you're right that the placebo effect tells us something

important about the power of the brain over the body. I'm guessing

that brain retraining harnesses some of that effect and puts it to

good, systematic use. I'm not saying that's all that it does. What

I don't understand is your argument: if there is a placebo effect

in drug studies then brain retraining doesn't work. That's a huge

leap. Based on your own prejudices I supposed. But, as you say,

nothing works. So what about the people who do get better? I spent

years in and out of Dr. Rea's clinic and saw people get well and

return to their old lives. Anne

On Dec 18, 2009, at 1:26 AM, Carl E. Grimes wrote:

> Anne,

>

> Not exactly and certainly not according to current beliefs and

> opinions about the placebo effect. It might be more accurate to

> say that the placebo effect is really something other than what

> most currently believe it to be (mental without physcical basis, in

> other words " psychological " ), rather it is physically based on

> biochemistry. It may be similar to, or a part of, neuroplasticity, or

> something entirely different. No one knows and this is just my

> layman's type conjecture based on the information I presented,

> nothing authoritative.

>

> As for treatments I think actually work, I don't think there is yet

> any specific one because MCS is still a cluster of multiple causes

> and effects. A better name might be Chemical Intolerance, which

> is what now suggests, or Toxic Encephalopathy

> which Angel prefers.

>

> opines a theory called Toxic Induced Loss of Tolerance

> (TILT) which is both specific but yet open enough to include the

> multiplicity of events and effects. I'll defer to Angel on TE is she

> so chooses.

>

> Carl Grimes

> Healthy Habitats LLC

>

[Guest guest]

Carl,

I would have to agree that neuroplasticity can't do the detox for

example, but say that the brain or nervous system has learned to

overreact as can happen in chronic pain, perhaps the brain could learn

to stop overreacting thru neuroplasticity training, seems plausible and

unproven...

Thanks for sharing about the triple blind, fascinating. I have read

quite a bit about clinical drug trials, and they can be very very rigged

to get the desired results, even without the outright fraud that

seemingly daily makes the papers. For example, in antidepressant drug

trials, they are allowed to have a " washout period " during which they

can drop any participants who get a beneficial effect from the placebo,

and of course the participants who are most likely to respond favorably

to the placebo are those who weren't previously on antidepressants.

They recruit participants previously on antidepressants and they tend to

respond well to going back onto antidepressants, any flavor of

antidepressants, because they are essentially going thru withdrawals...

And of course the drug trials are never designed to compare how a drug

works versus some other therapy, whether that be another drug, or an

herbal formula, or exercise, or nutrition or whatever because the

clinical trials are designed and paid for by the drug companies who want

to get their product approved and sell it...

As I recall a good book on this subject is Overdosed America...

SUe

>Anne,

>

>I'm far from an expert on neuroplasticity and am not a

>psychologist so my terminology may have been more than a little

>fuzzy.

>

>I realize it is physical but usually not identified as such, more

>often labeled as psychological and that's how most of us

>understand it. So that was my starting point. I didn't have a good

>ending point so here is my attempt...

>

>

[Guest guest]

I think it may depend largely on the damage to the olfactory system/tracts and

beyond, and the more damage in this area, the more likely those axon trees are

pretty damaged, they can growth new branches but that doesn't mean they well

ever function properly.

sorry, been awhile sence I did much research on this subject, I cant keep the

proper termology in my head inless I stay on it. I really fell that some people

do get better because their exstent of organ was still in the healing (back to

normal or close to it)stage.

some of this may also be dependent on some fast desent medical help

after exposure, but with longer term exposure you might just be screwed.

>

> Carl,

>

> I would have to agree that neuroplasticity can't do the detox for

> example, but say that the brain or nervous system has learned to

> overreact as can happen in chronic pain, perhaps the brain could learn

> to stop overreacting thru neuroplasticity training, seems plausible and

> unproven...

>

[Guest guest]

Read THE BRAIN THAT CHANGES ITSELF. They used to think that each part

of the brain mapped to a part of the body, for example, one part of the

brain mapped to the hand, another to the foot, etc. and if the hand part

of the brain got damaged, then the hand wouldn't work and vice versa.

Now they have discovered that the brain is " neuroplastic " in other words

adaptable and can change the way it does things if a part of the body is

damaged, or a part of the brain is damaged. I don't remember all the

case studies in the book, but I do remember they were interesting. I do

remember something about the first case study. A woman took oral

gentamycin (spelling? it's an antibiotic) and a rare side effect of this

drug is that it destroys the vestibular sense part of the ear. This

woman completely lost her vestibular sense, didn't know up from down or

where she was in space, stumbled about and fell, her life was ruined, in

the book it says people with this problem usually end up committing

suicide. Well, with the help of some kind of scientist, researcher,

practitioner, I forget which, this woman trained her brain to figure out

where she was in space WITHOUT the use of the vestibular part of the

ear, which was damaged beyond repair, the brain mapped to some other

parts of the body and figured out a different way to know where it was,

remarkable, " plastic " , and the implications are almost limitless...

SUe V.

>I think it may depend largely on the damage to the olfactory system/

>tracts and beyond, and the more damage in this area, the more likely

>those axon trees are pretty damaged, they can growth new branches but

>that doesn't mean they well ever function properly.

>sorry, been awhile sence I did much research on this subject, I cant

>keep the proper termology in my head inless I stay on it. I really fell

>that some people do get better because their exstent of organ was still

>in the healing (back to normal or close to it)stage.

>some of this may also be dependent on some fast desent medical help

>after exposure, but with longer term exposure you might just be screwed.

>

>

>

>

>>

>> Carl,

>>

>> I would have to agree that neuroplasticity can't do the detox for

>> example, but say that the brain or nervous system has learned to

>> overreact as can happen in chronic pain, perhaps the brain could learn

>> to stop overreacting thru neuroplasticity training, seems plausible and

>> unproven...

>>

[Guest guest]

Anne,

Thank you for continuing this discussion because when

definitions change and shift it's hard to appreciate what it means

without continuing the old ways.

I did not mean to imply or create the impression in the way you

re-stated it, " if there is a placebo effect in drug studies then brain

retraining doesn't work. "

Far from it. I'm no expert and not trained in this topic but my

impression and intent is just the opposite. If the new findings on

the placebo effect are actually true, then I think it strongly

supportive that brain retraining is not only possible but perhaps a

powerful healing tool.

Also, I didn't mean " nothing works. " What I mean is after a certain

point no one thing works by itself. It can take a multitude of

actions in combination and with lots of luck for " something " to

work. " Something " is not one thing, but may be a complex

" system " of things.

What we have to be careful about is over-reaching what new

information means and what it can or cannot do. The scientists

and other experts are most guilty of this. Every new discovery is

hailed as the answer to everything. Only later do we find out that

it works very well with a small segment and maybe harms with

others. We need to start thinking in terms of " a range of

responses " rather then black-and-white.

For example, you mentioned lots of people who got well and

returned to a normal life after going through Dr Rae's clinic. I

have also. I've also seen those who haven't recovered. Likewise,

most of the clients and the friends I'm familiar with returned to a

normal life very quickly once they figured out how to get the to

exposures stop. But not all of them.

Everybody reacts to something. But most people react slightly

and consider the exposure a nusiance or minor irritation.

Besides, they can ignore it and get on with their life.

Some, however, reach the point where the impact is severe

enough that they must stop their routine life and find out what is

going on and how to fix it. It may take awhile but the cause and

the change is usually a minor adjustment in their old life.

When the impact becomes more severe and longer lasting they

are ill much of the time, they react to multiple exposures and can

never get " clear, " they need longer times to recover, it alters their

routine life. And the changes necessary to avoid exposures are

also life altering. This is much more difficult and describes most

of those on this group. Those who don't reach this point of

complexity and impact have no interest in Sickbuilding.

When the impact becomes even more severe with constant

illness, impossible to avoid the multitude of exposures, can't

work, can't recover, and find it difficult to take care of themselves

let alone a family, that is disability.

How far each of us moves through this range of impact and how

easily we return to our old life depends on our genetics, exposure

history, what we are exposed to, at what level, for how long, with

what combinations, good medical treatment or wrong medical

treatment, whether we can remove the exposure source or

remove ourself from the exposure source(s), and so on.

It can be very complicated but can also be simple for some. We

should not fall into the trap that there is one cause and one

remedy. It took me years to figure out what to avoid and what I

could tolerate. It took me years to gradually and very slowly

improve. During that time my " wellness " and " illness " bounced to

extremes on a daily basis. Eventually the extremes were on a

weekly basis. And then monthly. Only to go back to daily trauma

because I ate the wrong food, or it wasn't fresh, or it had

pesticides on it, or I got a mold exposure or someone near me

was wearing perfume. And sometimes it was just my body

changing on it own because it was so unstable it didn't need an

exposure to trigger a reaction. It was triggering its own. Then the

recovery process started again.

As I described previously, I also fortuitiously stumbled on a

" mental " method to reprogram my brain (to use the newer

terminology) to better identify when a reaction was harmful and

when it was a nuisance, or I could recover in a reasonable time.

Constant focus and attention to detail trying to understand why

lettuce, for example, made me ill today but it didn't yesterday and

what to do about it.

Looking back now (but certainly not when I was in the middle of it

all) I'm fortunate to have been impacted to the point of disability

while somehow finding my way out of it.

Is my life now back to its old ways? ABSOLUTELY NOT AND I

DON'T WANT MY OLD LIFE BACK! It was the old ways that

contributed to my getting so ill, which blinded me to the very real

impact various exposures had on me, and when I needed to stop

and take care of myself. I needed the pain to recognize what to

avoid. The pain is now my guidance. (Which is what some of you

have recently talked about).

If I'd gone back to my old life I'd be dead.

I'm still reactive to everything I was before. However, it takes a

longer exposure at higher levels, the impact is less, and the

recovery time is shorter. I can push the limits but for only so long.

If I'm not willing to suffer through the recovery then I try not to

exposue myself. Sometimes I can't avoid it like the hotel in Miami

last month.

So tell me what is physical, what is psychological, what are my

own fears, and what is " real? " In one sense it is critical to

understand this syndrome. In another sense I don't have to know

all the details and certainly not first need the approval of medical

authorities, to take care of myself the best way I know how.

Sorry for the long post, but your questions are important and

need a thorough discussion by any who wish to join in. This was

my experience and may not be anything like that of others.

Carl Grimes

Healthy Habitats LLC

-----

Carl,

I think you're right that the placebo effect tells us something

important about the power of the brain over the body. I'm guessing

that brain retraining harnesses some of that effect and puts it to

good, systematic use. I'm not saying that's all that it does. What

I don't understand is your argument: if there is a placebo effect

in drug studies then brain retraining doesn't work. That's a huge

leap. Based on your own prejudices I supposed. But, as you say,

nothing works. So what about the people who do get better? I spent

years in and out of Dr. Rea's clinic and saw people get well and

return to their old lives. Anne

On Dec 18, 2009, at 1:26 AM, Carl E. Grimes wrote:

> Anne,

>

> Not exactly and certainly not according to current beliefs and

> opinions about the placebo effect. It might be more accurate to

> say that the placebo effect is really something other than what

> most currently believe it to be (mental without physcical basis, in

> other words " psychological " ), rather it is physically based on

> biochemistry. It may be similar to, or a part of, neuroplasticity, or

> something entirely different. No one knows and this is just my

> layman's type conjecture based on the information I presented,

> nothing authoritative.

>

> As for treatments I think actually work, I don't think there is yet

> any specific one because MCS is still a cluster of multiple causes

> and effects. A better name might be Chemical Intolerance, which

> is what now suggests, or Toxic Encephalopathy

> which Angel prefers.

>

> opines a theory called Toxic Induced Loss of Tolerance

> (TILT) which is both specific but yet open enough to include the

> multiplicity of events and effects. I'll defer to Angel on TE is she

> so chooses.

>

> Carl Grimes

> Healthy Habitats LLC

>

----------

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[Guest guest]

Carl, I think you put that very well, nothing more, I want to say on this

subject except that things like this should maybe be tried first and talked

about later after they have tried it, and yes, even than try to consider that

not everyone was affected the same and might not heal the same. reading things

can sometimes sound really good, even make some sence, but that doesn't mean you

will actually even be secessful at getting through the program or that it well

help.

say someone had a exposure and gee, they felt really bad like they were going to

die for awhile and they started this mind control theory and wahlaa a few years

done the road they fell better, so they think it was the mind control, but maybe

it was really more to do with them getting out of that environment and time

healing them and nothing they took or did really played a role in that. they

would fell rather foolesh if someone did studies based on their theory only to

find it didn't work for anybody else.

>

> Anne,

>

> Thank you for continuing this discussion because when

> definitions change and shift it's hard to appreciate what it means

> without continuing the old ways.

>

> I did not mean to imply or create the impression in the way you

> re-stated it, " if there is a placebo effect in drug studies then brain

> retraining doesn't work. "

>

>

[Guest guest]

Thank you Carl,  I could not have expressed it in the same manner and was so

apprriate for us as well, although we are in different places in our lives and

stages of recovery or exposure.....................

 

 We are in the process of moving and throwing everything out again due to

mold.............we found a somewhat safer place for the

moment...........................our bodies taxed....................

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Carl E. Grimes <grimes@...>

Sent: Fri, December 18, 2009 9:46:07 PM

Subject: Re: [] Neuroplasticity - [Was: brain retraining for mcs

and more, don't know about effects on mold toxicity]

 

Anne,

Thank you for continuing this discussion because when

definitions change and shift it's hard to appreciate what it means

without continuing the old ways.

I did not mean to imply or create the impression in the way you

re-stated it, " if there is a placebo effect in drug studies then brain

retraining doesn't work. "