Re: You might find this article of interest

[Guest guest]

I believe people get upset because those of us that have had this a very long

time, even before Incline were told for years that we were type A personalities,

or that it was some sort of attention getting device, or that it was in our

heads and to seek theraputic help. Especially the females. I talked with men

that had CFS and doctors rarely suggested psychological problems. I even had a

doctor at Stanford ask me if I left my husband did I think I would get well. I

was in a stable and happy relationship. Now it's 30 years later and this topic

is still coming up. Damn right we're tired of it.

yakcamp22 <yakcamp22@...> wrote: A-re-read what I said. What

I meant was that whenever the cause of

CFS is said to be psychological, people get upset. I don't think you

or anyone else can disagree w/ that. I also further stated that

Tom needed to tie in childhood emotional trauma to actual physical

symptoms like adrenal stimulus so that there is some sort of

experimental treatment perhaps. I certainly didn't mean to be

intimidating, I was just stating what I thought would happen and

pretty much most people who responded to Tom were somewhat upset

or dismayed.

Mike C

--- In , " Adrienne G. " Tom, I

think if you continue this thread without pointing out

> some concrete physiological abnormalities, you will find that it

> upsets a lot of people. "

>

> I didn't read the study, did you, Mike? I mean, that you are

sure it excludes physical trauma?

> I also think it is inappropriate to inform people they are

liable to upset many others. That is intimidating. We don't need

that.

> Adrienne

[Guest guest]

Edy-I have had several docs recommend to me that I see a psychiatrist

or pshychologist. I am a man, BTW. I think the problem is that docs

have egos, as we all do, and when they don't know what is wrong with

you, they are able to (in their own minds) come to a successful

conclusion w/ a patient by sending them to a shrink-when their

standardized blood, cardiovascular, etc. test all come back 'normal'.

The docs don't know what to look for, and maybe this new CDC

awareness campaign will help some, but it is dreadfully short on

specifics when it comes to treatments and even diagnosis.

Mike C

>

> I believe people get upset because those of us that have had this

a very long time, even before Incline were told for years that we

were type A personalities, or that it was some sort of attention

getting device, or that it was in our heads and to seek theraputic

help. Especially the females. I talked with men that had CFS and

doctors rarely suggested psychological problems. I even had a

doctor at Stanford ask me if I left my husband did I think I would

get well. I was in a stable and happy relationship. Now it's 30

years later and this topic is still coming up. Damn right we're

tired of it.

[Guest guest]

Edy Rayfield < wrote:

>

> I believe people get upset because those of us that have had this

a very long time, even before Incline were told for years that we

were type A personalities, or that it was some sort of attention

getting device, or that it was in our heads and to seek theraputic

help. Especially the females. I talked with men that had CFS and

doctors rarely suggested psychological problems. I even had a

doctor at Stanford ask me if I left my husband did I think I would

get well. I was in a stable and happy relationship. Now it's 30

years later and this topic is still coming up. Damn right we're

tired of it.

>

One of the main reasons why I say that this illness was a major

paradigm shift is that I had seen the same illness description five

years before Incline - and was on the lookout for it.

/message/55289

I realize that I didn't go into every household, but in social

environments like jobs or schools, it was easy to observe, and when

people lost their jobs and were too sick to go to school - and

started their own " Doctor Seeking Behavior " , I could watch both the

realization of people who acquired the illness AND the reaction of

people around them.

And this was clearly an unrecognizable thing.

-

[Guest guest]

Hi Mike C,

I'm sure that's the case now, but I'm talking 25 years ago when all the talk was

that 75% of CFSers were women. No one even expolored the hormone aspect of it.

One doctor actually said in the old days they called it " swooning " ! To be

honest I haven't gone to a doctor for CFS in a very long time. I frankly don't

want to see their glazed over look when I mention it. I've lost a ton of weight

due to gut issues and one doc told me to eat more. Ice cream and cheese, lots

of meat. What?! My tests come back " normal " as well until I start testing for

leaky gut, lyme, NK activity, heavy metals etc. which all come back showing a

not good scenerio. To find a cause I believe that we have to look at what has

weakened the system to begin with so that some of us that are exposed get

slammed and others don't. My personal favorite target is chemicals that do not

belong in a human body, a toxic environment that upsets the messaging systems.

Just like a drop of water will seriously mess with an electrical current and

face it we are electricity and chemicals. Balanced very subtly. WE have to

take the matter in hand. And I appreciate all on this list that are trying just

that.

Edy

Re: You might find this article of interest

Edy-I have had several docs recommend to me that I see a psychiatrist

or pshychologist. I am a man, BTW. I think the problem is that docs

have egos, as we all do, and when they don't know what is wrong with

you, they are able to (in their own minds) come to a successful

conclusion w/ a patient by sending them to a shrink-when their

standardized blood, cardiovascular, etc. test all come back 'normal'.

The docs don't know what to look for, and maybe this new CDC

awareness campaign will help some, but it is dreadfully short on

specifics when it comes to treatments and even diagnosis.

Mike C

>

> I believe people get upset because those of us that have had this

a very long time, even before Incline were told for years that we

were type A personalities, or that it was some sort of attention

getting device, or that it was in our heads and to seek theraputic

help. Especially the females. I talked with men that had CFS and

doctors rarely suggested psychological problems. I even had a

doctor at Stanford ask me if I left my husband did I think I would

get well. I was in a stable and happy relationship. Now it's 30

years later and this topic is still coming up. Damn right we're

tired of it.

------------------------------------------------------------------------------

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[Guest guest]

>

> Hi Mike C,

To be honest I haven't gone to a doctor for CFS in a very long

time. I frankly don't want to see their glazed over look when I

mention it. I've lost a ton of weight due to gut issues and one doc

told me to eat more. Ice cream and cheese, lots of meat.

<<<<Ditto w/ me re docs and weight loss>>>>>>

To find a cause I believe that we have to look at what has

weakened the system to begin with so that some of us that are

exposed get slammed and others don't. My personal favorite target

is chemicals that do not belong in a human body, a toxic environment

that upsets the messaging systems. Just like a drop of water will

seriously mess with an electrical current and face it we are

electricity and chemicals. Balanced very subtly. WE have to take

the matter in hand. And I appreciate all on this list that are

trying just that.

>

> Edy

<<<this theory of yours may well be right, including mold. However,

as someone recently pointed out to me BC, it would be nice to find

a cause that actually has a logical treatment. But in the end, that

may or may not be the case. At least, Edy, you have a theory. I am

stumbling through the darkness in hopes of finding one.>>>>

Mike C

[Guest guest]

Thanks Mike,

But a theory is just that, a theory. I can only say mine is supported by

non-conventional testing for decades and I just can't think of anything else.

I've been a good girl and followed treatment protocols for most of the things

that have tested " off " and still I'm housebound and have all the same symptoms.

The only thing so far that makes any sense to me is that I remember THE moment I

dropped. I live in a small town that is surrounded by agriculture that used to

be heavily sprayed by air. I've always theorized that I got dosed somehow while

in the garden and dropped. That was the drop of water on the wire. The

electrical system never functioned again leaving me open to whatever baddie came

along. But why me? I must say tho that in my town there is an inordinant

amount of odd disease in the young to middle age group. Not the elders. From

sarcoidosis to cancer to schizophrenia. Whole families have become ill and

simply moved on away from the fields. But it's

only a theory as there are also many healthy individuals as well.

I did see Dr. Lapp in 2002 and after hours with him he concluded I did

not have CFS. But wished me luck in my search.

Edy

yakcamp22 <yakcamp22@...> wrote:

>

> Hi Mike C,

To be honest I haven't gone to a doctor for CFS in a very long

time. I frankly don't want to see their glazed over look when I

mention it. I've lost a ton of weight due to gut issues and one doc

told me to eat more. Ice cream and cheese, lots of meat.

<<<<Ditto w/ me re docs and weight loss>>>>>>

To find a cause I believe that we have to look at what has

weakened the system to begin with so that some of us that are

exposed get slammed and others don't. My personal favorite target

is chemicals that do not belong in a human body, a toxic environment

that upsets the messaging systems. Just like a drop of water will

seriously mess with an electrical current and face it we are

electricity and chemicals. Balanced very subtly. WE have to take

the matter in hand. And I appreciate all on this list that are

trying just that.

>

> Edy

<<<this theory of yours may well be right, including mold. However,

as someone recently pointed out to me BC, it would be nice to find

a cause that actually has a logical treatment. But in the end, that

may or may not be the case. At least, Edy, you have a theory. I am

stumbling through the darkness in hopes of finding one.>>>>

Mike C

[Guest guest]

> To find a cause I believe that we have to look at what has

weakened the system to begin with so that some of us that are

exposed get slammed and others don't. My personal favorite target

is chemicals that do not belong in a human body, a toxic

environment that upsets the messaging systems.

> > Edy

> this theory of yours may well be right, including mold. However,

> as someone recently pointed out to me BC, it would be nice to find

> a cause that actually has a logical treatment. But in the end,

that may or may not be the case. At least, Edy, you have a theory.

I am stumbling through the darkness in hopes of finding one.>>>>

> Mike C

>

Howzabout this one?

It's logical, and it's testable by HLA assay.

Acting in accordance with the fundamental concept got me out of a

fearful mess when I was really at the end of my rope.

But that's a different chapter.

-

----------------------------------------------------------------

Some people just don't get it. They look at me and ask, " Why are

you on a diet? " Here I am, six feet tall and lucky to break 154

pounds. I've got a nice career working as an automotive engineer

and everyone says I've got everything going for me.

Except for my illness. Food makes me sick.

So I'm on a diet that doesn't include foods everyone else enjoys.

Stop for a burger? Not me. How about a steaming plate of fresh

manicotti? That would make me sick for a week. A hot dog with

French Fries at the football game? Can't do it. I don't like to

drink beer and rarely have a cold one, but even on that blue-moon

day when I do, the commercial beers make me sick. How about a nice

romantic dinner with a pleasant young lady, with steaks on the grill

and a loaf of toasted garlic bread? Can't do the bread.

All this is because I have antigliadin antibiodies, Autoantibodies,

as they are called. If you already know that my mold-susceptible

genotype sets me up for a dietary problem, you have learned well

from Chapter 4 (The Biotoxin Pathway)

Chapt 13 Mold Warriors " Why's the Skinny Guy on a Diet? And No,

It's not Atkins! -by Marty e

[Guest guest]

-what is HLA assay or can I just Google it up? Thanks,

Mike C

- In , " erikmoldwarrior "

<erikmoldwarrior@...> wrote:

> Howzabout this one?

> It's logical, and it's testable by HLA assay.

> Acting in accordance with the fundamental concept got me out of a

> fearful mess when I was really at the end of my rope.

> But that's a different chapter.

> -

[Guest guest]

I love it, . As a matter of fact I've read that chapter and have just sent

off a test sample. Also am seeing a doc that's into mold exposure here in

central CA and if that doesn't pan out am going to make every effort possible to

see Shoemaker. I've got his new patient packet at my elbow as I type. I like

his ideas on chronic lyme as I'm on that list, too.

Re: You might find this article of interest

> To find a cause I believe that we have to look at what has

weakened the system to begin with so that some of us that are

exposed get slammed and others don't. My personal favorite target

is chemicals that do not belong in a human body, a toxic

environment that upsets the messaging systems.

> > Edy

> this theory of yours may well be right, including mold. However,

> as someone recently pointed out to me BC, it would be nice to find

> a cause that actually has a logical treatment. But in the end,

that may or may not be the case. At least, Edy, you have a theory.

I am stumbling through the darkness in hopes of finding one.>>>>

> Mike C

>

Howzabout this one?

It's logical, and it's testable by HLA assay.

Acting in accordance with the fundamental concept got me out of a

fearful mess when I was really at the end of my rope.

But that's a different chapter.

-

----------------------------------------------------------

Some people just don't get it. They look at me and ask, " Why are

you on a diet? " Here I am, six feet tall and lucky to break 154

pounds. I've got a nice career working as an automotive engineer

and everyone says I've got everything going for me.

Except for my illness. Food makes me sick.

So I'm on a diet that doesn't include foods everyone else enjoys.

Stop for a burger? Not me. How about a steaming plate of fresh

manicotti? That would make me sick for a week. A hot dog with

French Fries at the football game? Can't do it. I don't like to

drink beer and rarely have a cold one, but even on that blue-moon

day when I do, the commercial beers make me sick. How about a nice

romantic dinner with a pleasant young lady, with steaks on the grill

and a loaf of toasted garlic bread? Can't do the bread.

All this is because I have antigliadin antibiodies, Autoantibodies,

as they are called. If you already know that my mold-susceptible

genotype sets me up for a dietary problem, you have learned well

from Chapter 4 (The Biotoxin Pathway)

Chapt 13 Mold Warriors " Why's the Skinny Guy on a Diet? And No,

It's not Atkins! -by Marty e

------------------------------------------------------------------------------

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[Guest guest]

>

> -what is HLA assay or can I just Google it up? Thanks,

>

> Mike C

The genes responsible for the steps involved in antibody formation,

known collectively as HLA DR are found on chromosome 6 and are

associated with failure to clear the illness following exposure.

Because the toxin isn't recognized as something foreign, as an

antigen should be, it's " allowed " to persist in the body. Because

these toxins (Lyme Pfiesteria mold -erik) have a unique structure -

we call them " ionophores " in chemistry class - that prevent them

from being metabolized or excreted, these patients stay ill, even

following removal from exposure. For these people, even short term

exposure can be dangerous, especially if they've been primed by

prior exposure.

page 63 " The Biotoxin Pathway "

(Ok " Tapanui " , this is for you! Remember when the stuff you

unpacked from your old apartment that gave you a slam?)

Well, when Dr Cheney asked me to participate in the Holmes et al

study to define CFS, I said " But what about the mold? I have an

inexorably increasing reactivity to mold that grows progressively

worse NO MATTER WHERE I LIVE or how well I try to take care of

myself " . (I remember standing out in the hallway and practicing that

one before I said it. Took me a long time to memorize) But Dr C

didn't think that would complicate matters, so I went ahead and got

to be a charter member of the " CFS club " .

My mold complaints were attributed to the generalized reactivity we

had to just about everything - but what I wanted was research into

the weird SPECIFICITY of this particular toxin.

And now, we are seeing that there is a very good reason for this

specificity. It is the receptor blocking action of ionophores and

the incredible cytokine cascade that happens upon re-exposure.

It doesn't matter WHERE you live. Living with biotoxin illness

after being " primed " is more like what severe " peanut allergy "

people have to deal with. Residue and slight amounts can be

anywhere. Makes it real interesting to deal with.

-

[Guest guest]

" Edy Rayfield " < wrote:

>

> I love it, . As a matter of fact I've read that chapter and

have just sent off a test sample. Also am seeing a doc that's into

mold exposure here in central CA and if that doesn't pan out am going

to make every effort possible to see Shoemaker. I've got his new

patient packet at my elbow as I type. I like his ideas on chronic

lyme as I'm on that list, too.

>

Great. So you see what Dr S is saying about Lyme toxins?

People think that Dr S doesn't believe in Lyme because they

misinterprete what he is saying.

If the problem is persistent infection, sure - treat it.

But if it's recirculating Lyme ionophore toxins, it's just a waste,

since the primary problem is the toxins - which, of course, are not

alive and cannot be killed.

-

[Guest guest]

If you read " Desperation Medicine " as I have you can see that he is very much

into lyme as a huge problem with the toxins. I think he has a pretty good

handle on it and I do think it could be a major source of my problems. This is

the last doc I'm going to see in my area and then if it doesn't feel right I'm

off to land.

Re: You might find this article of interest

" Edy Rayfield " < wrote:

>

> I love it, . As a matter of fact I've read that chapter and

have just sent off a test sample. Also am seeing a doc that's into

mold exposure here in central CA and if that doesn't pan out am going

to make every effort possible to see Shoemaker. I've got his new

patient packet at my elbow as I type. I like his ideas on chronic

lyme as I'm on that list, too.

>

Great. So you see what Dr S is saying about Lyme toxins?

People think that Dr S doesn't believe in Lyme because they

misinterprete what he is saying.

If the problem is persistent infection, sure - treat it.

But if it's recirculating Lyme ionophore toxins, it's just a waste,

since the primary problem is the toxins - which, of course, are not

alive and cannot be killed.

-

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[Guest guest]

" Edy Rayfield " < wrote:

>

> If you read " Desperation Medicine " as I have you can see that he

is very much into lyme as a huge problem with the toxins. I think

he has a pretty good handle on it and I do think it could be a major

source of my problems. This is the last doc I'm going to see in my

area and then if it doesn't feel right I'm off to land.

>

In Mold Warriors, I tell the story of accompanying another Incline

Village CFSer into mold, and seeing that she was oblivious to what

was causing the sensation, so I told her my mold story, and then she

asked if I had read Desperation Medicine - and gave me the book.

I read his chapter on CFS and was amazed to see that a doctor on

the other side of the country had a clearer view of what happened

here than people who were standing right next to me.

After all these years of watching doctors turn and run when I

mentioned mold, it was incredible to finally contact one who knew

exactly what I was talking about - and who made time to listen to a

CFSer who had a few clues.

-