Re: Misguided recovery from CFS

[Guest guest]

.... " It was avoidance of the immunological response to toxic exposures

that induced the " stress " response that allowed his " healing " . "

I totally agree. And you first have to get in a place where you can

practice that avoidance. If you have mold or a constant exposure to

whatever it was that hit you originally - you will NOT get well.

While it may be true that some services out there are only out to

make money on the unfortunate situation - many are out there to help

you have that clean environment you need to get well.

We hired a remediation company. It was very expensive but we liked

our house and community (schools, church, kids friends, etc) and

weighed the cost of starting completely over in another house. As

it turned out we headed into the chemical sensitivities part of the

disease as we changed our environment. A new house would have been

a huge mistake as all materials would have been difficult to

control. As it was, it was a challenge because original

reconstruction plans changed dramatically as all materials shifted

to non-toxic (expensive) alternatives.

In the end there's probably not too much we would have done

differently.

I feel for some of you who are in the early stage of trying to

figure out what is hitting you. It's an overwhelming process.

winslake

>

> I want all of you to examine this example of " misguided

recovery "

> from CFS. Tom Oates describes his strategy for recovery as

> pursuing " healing peace " but look at the MANNER in which he

> accomplished this miraculous " healing " :

>

> http://www.healing-peace.com/story.html

> >At first it was diagnosed as mononucleosis and bronchitis. I had

> >lost a lot of weight; my hair was falling out by the handfuls. My

> >vision was blurred, my brain was fuzzy, my joints ached and I had

> >chronic tonsillitis. I was coughing up blood. I slept a lot, and

> >after four months, began venturing back to the office, trying to

> >drive the fatigue away with productive effort. When I looked in

> >the .mirror, I did not recognize myself. I had aged 15 years in

five

> >months and felt like I was 80 and getting older every day. I

thought

> >I was dying. My health was spiraling down out of control at an

> >accelerating pace.

>

> >After five doctors in nine months, I was diagnosed with CFIDS by

Dr.

> > Cheney. He showed me scans of fatigued brains and said to

avoid

> >all aerobic exercise. I was just happy to have found a physician

> >that did not treat me like a lying, incurable, whining

hypochondriac.

>

> >I gave up my apartment. I had my things put into storage and

moved

> >home, thankful to have a place to fall back on. I was put on

> >disability leave. -Tom Oates.

>

> I GAVE UP MY APARTMENT!

> I HAD MY THINGS PUT INTO STORAGE AND MOVED HOME,

> THANKFUL TO HAVE A PLACE TO FALL BACK ON.

>

> Sound familiar to anyone?

> Yet somehow Tom reached the conclusion that it was " stress " that

he

> was avoiding - this is the " Unconscious Avoidance " that I refer to.

> When I tested my reaction to Stachy by taking a sample to a safe

> place and found - much to my amazement - that STRESS-ANXIETY-

> DEPRESSION was the consistent response to such exposure, I

adopted

> these " emotional responses " as an indicator of toxic exposure and

a

> guide to appropriate avoidance and decontamination protocols.

> As I've said before, " Depression " is not what psychiatrists think

it

> is. Depression is natures way of signalling immunological

> upregulation of inflammatory cytokines and is designed as a

WARNING

> SYSTEM OF IMPENDING DAMAGE.

> Tom's story is consistent with mycotoxicosis. He experienced the

> immunological inflammatory upregulation and depletion of leucocyte

> subsets which allowed viral reactivation AND he correctly observed

> the correlation of cytokine upregulation with his " emotional

> responses " .

> His avoidance of the " stress/cytokine " response was appropriate.

> His attribution of recovery by controlling " stress " was not.

> It was avoidance of the immunological response to toxic exposures

> that induced the " stress " response that allowed his " healing " .

>

> My God! How long is it going to take before people get this

through

> their heads?

> -

[Guest guest]

I lost some weight over the years (8 to 10 lbs.) without changing my

eating habits. I'm unsure if it is related to the mold. However,

there is a symptom that accompanies my feeling sick and that is

muscle soreness. At times I also experience joint aches.

I want all of you to examine this example of " misguided

recovery "

> from CFS. Tom Oates describes his strategy for recovery as

> pursuing " healing peace " but look at the MANNER in which he

> accomplished this miraculous " healing " :

>

> http://www.healing-peace.com/story.html

> >At first it was diagnosed as mononucleosis and bronchitis. I had

> >lost a lot of weight; my hair was falling out by the handfuls. My

> >vision was blurred, my brain was fuzzy, my joints ached and I had

> >chronic tonsillitis. I was coughing up blood. I slept a lot, and

> >after four months, began venturing back to the office, trying to

> >drive the fatigue away with productive effort. When I looked in

> >the .mirror, I did not recognize myself. I had aged 15 years in

five

> >months and felt like I was 80 and getting older every day. I

thought

> >I was dying. My health was spiraling down out of control at an

> >accelerating pace.

>

> >After five doctors in nine months, I was diagnosed with CFIDS by

Dr.

> > Cheney. He showed me scans of fatigued brains and said to

avoid

> >all aerobic exercise. I was just happy to have found a physician

> >that did not treat me like a lying, incurable, whining

hypochondriac.

>

> >I gave up my apartment. I had my things put into storage and

moved

> >home, thankful to have a place to fall back on. I was put on

> >disability leave. -Tom Oates.

>

> I GAVE UP MY APARTMENT!

> I HAD MY THINGS PUT INTO STORAGE AND MOVED HOME,

> THANKFUL TO HAVE A PLACE TO FALL BACK ON.

>

> Sound familiar to anyone?

> Yet somehow Tom reached the conclusion that it was " stress " that

he

> was avoiding - this is the " Unconscious Avoidance " that I refer to.

> When I tested my reaction to Stachy by taking a sample to a safe

> place and found - much to my amazement - that STRESS-ANXIETY-

> DEPRESSION was the consistent response to such exposure, I adopted

> these " emotional responses " as an indicator of toxic exposure and

a

> guide to appropriate avoidance and decontamination protocols.

> As I've said before, " Depression " is not what psychiatrists think

it

> is. Depression is natures way of signalling immunological

> upregulation of inflammatory cytokines and is designed as a

WARNING

> SYSTEM OF IMPENDING DAMAGE.

> Tom's story is consistent with mycotoxicosis. He experienced the

> immunological inflammatory upregulation and depletion of leucocyte

> subsets which allowed viral reactivation AND he correctly observed

> the correlation of cytokine upregulation with his " emotional

> responses " .

> His avoidance of the " stress/cytokine " response was appropriate.

> His attribution of recovery by controlling " stress " was not.

> It was avoidance of the immunological response to toxic exposures

> that induced the " stress " response that allowed his " healing " .

>

> My God! How long is it going to take before people get this

through

> their heads?

> -

>

[Guest guest]

> I think there may be some good news closer at hand than we think.

Cheney has (if I am told correctly) decided to work with some of

Richie Shoemaker's equipment, and is interested in the Ciguatera

research. Perhaps this will give him some new insight. I hope he can

let go of the basic metabolic ideas long enough to realize that he's

probably been looking at the symptoms of neurotoxicity all along. The

fact that he's paying attention to these two lines of research has a

good feel to it. Cheney is extremely influential. If he gets the

right idea, it will be a huge win for all of us!<

I tried to explain the mycotoxin connection to Dr Cheney and Dr

since the first day of the Incline Village epidemic, but

never could get them to listen or investigate the specificity of this

response.

Six years ago I gave Dr Cheney three more chances to listen after I

demonstrated the proof of this response but his office was completely

confused that I was offering to help HIM and that I only waste a

small amount of time on people who have no interest in the mycotoxin

connection.

And I said to them the same thing I say to anybody else who decides

to " blow off " this information; " Tough luck for you " .

Dr Hyde tells me that he heard that Dr Cheney's health has forced him

to withdraw from practice again so I'm uncertain how much of a part,

if any, that Dr Cheney will be able to take in this.

-

[Guest guest]

I was talking to Dr Hyde yesterday morning so this news of Dr

Cheney's condition may be more recent. I would be pleased if my old

neighbor Dr. Cheney was to recover and take his part in the mold

revolution. I was very disappointed when he failed to recognize the

significance of my story.

I've been training people to recognize mold hits for about six years

now and the peculiar thing is that not only do they NOT figure out

the cause of that sensation is for themselves, they go into

a " denial " mode, as if the concept that the world is a deadly and

toxic place is simply too much to face.

I usually have to take people in and out of exposure many times

before they " accept " what their perceptions have been trying to tell

them all along.

Most people instantly reject the notion of " mold hits " and are wildly

embarrassed when they find out that have been mentally ignoring

something that they could have easily figured out and taken proactive

steps to resolve.

And then again I have located people who were too far down the power

curve to take action while they still could and simply remained in

their moldy houses until they died.

-

[Guest guest]

Wow, . You put it so well. I try too to educate people on

potential mold hits and while they were and are sympathetic towards

us for what we went through - do not see it affecting them. Amazing.

thanks for your input.

winslake

>

> I was talking to Dr Hyde yesterday morning so this news of Dr

> Cheney's condition may be more recent. I would be pleased if my

old

> neighbor Dr. Cheney was to recover and take his part in the mold

> revolution. I was very disappointed when he failed to recognize

the

> significance of my story.

>

> I've been training people to recognize mold hits for about six

years

> now and the peculiar thing is that not only do they NOT figure out

> the cause of that sensation is for themselves, they go into

> a " denial " mode, as if the concept that the world is a deadly and

> toxic place is simply too much to face.

> I usually have to take people in and out of exposure many times

> before they " accept " what their perceptions have been trying to

tell

> them all along.

> Most people instantly reject the notion of " mold hits " and are

wildly

> embarrassed when they find out that have been mentally ignoring

> something that they could have easily figured out and taken

proactive

> steps to resolve.

> And then again I have located people who were too far down the

power

> curve to take action while they still could and simply remained in

> their moldy houses until they died.

> -

[Guest guest]

For 5 years I've been telling everyone (from doctors to my employer

to my family and friends) that something at work is causing me to

feel so sick. If I'm removed from the environment for 2 or more

days, I am back to myself. There are obvious physical symptoms

which cause people to say " Oh you just caught a bug or have a

virus " . Some actually looked at me and laughed at the fact I

am " allergic to work " . The concept is hysterical to them. Except

for the people who also noticed they are sick at work and fine at

home. The following article was published today in our local paper

(Westchester, NY's Journal News). At first I was relieved that the

admissions are surfacing. But then I realized this is only the

beginning of a very long fight.

http://www.thejournalnews.com/newsroom/011005/d0110sickbuilding.html

> >

> > I was talking to Dr Hyde yesterday morning so this news of Dr

> > Cheney's condition may be more recent. I would be pleased if my

> old

> > neighbor Dr. Cheney was to recover and take his part in the mold

> > revolution. I was very disappointed when he failed to recognize

> the

> > significance of my story.

> >

> > I've been training people to recognize mold hits for about six

> years

> > now and the peculiar thing is that not only do they NOT figure

out

> > the cause of that sensation is for themselves, they go into

> > a " denial " mode, as if the concept that the world is a deadly

and

> > toxic place is simply too much to face.

> > I usually have to take people in and out of exposure many times

> > before they " accept " what their perceptions have been trying to

> tell

> > them all along.

> > Most people instantly reject the notion of " mold hits " and are

> wildly

> > embarrassed when they find out that have been mentally ignoring

> > something that they could have easily figured out and taken

> proactive

> > steps to resolve.

> > And then again I have located people who were too far down the

> power

> > curve to take action while they still could and simply remained

in

> > their moldy houses until they died.

> > -

[Guest guest]

I'm running out of CFS specialists to present this concept to.

They have all shot me down except Dr Shoemaker, who is virtually the

only doctor who made any effort to pry this information out of me.

I haven't tried Dr Lapp, but Dr Klimas has made the same misguided

stress asssociation as a lot of CFSers have.

I tried to tell her Hurricane CFS survivors that their

symptoms may have been exacerbated by increased ambient levels of

mold rather than stress, but Dr Klimas has concluded that stress is

the cause, and that is that!

>More important than cross sectional studies of cytokines is the need

to do more studies of cytokine expression over time and what it might

be related to. Klimas has done studies of patterns of cytokine

expression over time and noted that they change with illness severity

with pro-inflammatory Th2 pattern increasing during times of flare.

Also a cluster analysis in literature show TNF cluster with IL1 and

TH2 type cytokines being expressed.

Hurricane study showed after the hurricane everyone with

chronic diseases became worse and study of HIV showed increased viral

expression and that the stress of the hurricane caused increased

viral replication. CFS patients showed dramatic increases in severity

of illness but also IL-1 expression tracking along with the severity

of illness. Important studies to track the illness over time are

ongoing. At least one study in Europe is looking at type 2 shift that

seems to occur later in illness rather than at onset.

The literature has its flaws because of too many cross sectional

studies. The literature suggests an antigen driven system that is

stuck " on. " The question has been raised whether it is polyclonal or

oligoclonal activation. It is possible to tell if polyclonal or

oligoclonal activation by the diversity of the immune response. It

does not appear to be polyclonal, but rather oligoclonal or antigen

specific. It appears to be antigen specific but we do not know the

antigen (the cause). We must reinforce the importance of subgrouping.<

Well, at least some of us know what the " antigen " is but it doesn't

do any good to scream it at them. I literally yelled this at Dr

in 1998 and have been trying to tell these researchers that

mycotoxins are the common denominator that tie these subgroups

together, but they are still locked into " denial " mode.

-

[Guest guest]

Have you tried heat? I can't use an electric heating pad or take

pain medication but have a dense sock filled with rice that I heat up

in the microwave - provides heat for quite a while. helps with the

pain.

winslake

> The joint pain can keep me in bed for days,

> Janet

>

>

>

[Guest guest]

When " Mold Warriors " is released I expect that Ritchie Shoemaker will

become the point man for group action. His book is turning mold

reactivity from fiction to fact.

-

[Guest guest]

People don't care about " numbers " .

No additional numbers of horror stories are going to make any

difference over and above the thousands that have already been told.

Nobody is going to be doubtful about mold reactivity, read a thousand

stories and suddenly have a " Road to Damascus " enlightenment on the

thousand and first story.

People connect with stories from celebrities.

People care if they think it can happen to them.

For maximum impact, this is where emphasis must be placed.

-

[Guest guest]

> Different people will be touched by different stories and

situations at different times. That's why a variety are needed at

different times. The recent post by Carol Lloyd at

> http://www.sfgate.com/columnists/lloyd/ was very powerful to me but

> not to a friend of mine.

Carl, is your friend reactive to mold?

Of course this story speaks to anyone who already understands it but

what effect does it have on people who have yet to be convinced?

The response to mold stories that I've seen from most people is " What

a shame, but it's just a fluke that could never happen to me " .

I saw more of a " belief response " and " This Matters! " when Ed McMahon

and Brockovitch described their situation than when Melinda

Ballard told her story.

-

[Guest guest]

We've got stories up the Wazoo!

No shortage of stories at all.

But people are not responding.

This is so weird.

Remember my stories about the CFS doctors I found who have all the

classic SX of mold reactivity themselves but wouldn't accept

information from me, not even to save their own butts?

Dr h Ryll, who has treated thousands of CFSlike illness patients

since 1975 described his wifes CFS symptoms to me and they were mold

specific, yet he didn't want to pursue this information.

Or what about Dr who refused to help me research this, but

accepted the information I dropped off without a word and later had a

couple of his " ampligen success stories " bail out of moldy houses

when they relapsed. But other than that, is totally uninterested in

helping the other Incline CFSers I've found who are struggling with

mold reactivity.

I've done everything I could think of including corresponding with

Congressman Bob Filner, to no avail. And he's the guy who got money

to research the Sudden Oak Death Phytophthora that's killing the

coastal oaks. Maybe once Mold Warriors gets released he may take

more interest in this.

If the history of this whole thing is written to include the denials

of all the hundreds of institutions like Stanford and UC

,doctors, toxicologists, immunologists, CFS researchers,

Mycologists and allergists who told me that mold reactivity of this

nature was flat out impossible, Dr Shoemaker is really going to shine.

He's the only one who responded as Sir Osler would have.

-

[Guest guest]

I'm just saying that it's not the numbers of horror stories that

people respond to. They don't emotionally connect with numbers.

They need a compelling story that has " sound bite " value.

It's like Hillenbrand put more of a face on CFS than mind

boggling numbers of suffering people but this opportunity wasn't

seized on and exploited.

We need to present this in a way that " grabs " people rather than try

to impress them with sheer numbers.

I've been putting out my strange story for years.

In fact I'm currently getting the " troll treatment " on a list that

has correlated their CFS symptom exacerbation to specific locations

because I'm making the absolutely insane and absurd assertion that

these people are responding to varying levels of mold in their

environment.

I really thought that describing " Sick Thermal Syndrome " or being

exposed to mold in Hitlers Bunker was kind of interesting, in

addition to all my other weird mold experiences, but nope.

Just denial and contradiction for the most part.

-

[Guest guest]

We need to get a solid figure on the actual numbers of affected

people. I have been hammering the activist community for this for six

months. Then it needs to be put in the perspctive of affected

numbers of other diseases. People will relate if this is stacking up

numbers-wise against a " diagnosable " like Lupus (and let's not even go

to the obvious association and potential for misdiagnosis there...)

And where are Brockovitch and Ed McMahon now, anyway? Maybe a

gag order on their cases? Maybe not really that affected?

Sheesh.

Lee

>

> I'm just saying that it's not the numbers of horror stories that

> people respond to. They don't emotionally connect with numbers.

> They need a compelling story that has " sound bite " value.

> It's like Hillenbrand put more of a face on CFS than mind

> boggling numbers of suffering people but this opportunity wasn't

> seized on and exploited.

> We need to present this in a way that " grabs " people rather than try

> to impress them with sheer numbers.

>

> I've been putting out my strange story for years.

> In fact I'm currently getting the " troll treatment " on a list that

> has correlated their CFS symptom exacerbation to specific locations

> because I'm making the absolutely insane and absurd assertion that

> these people are responding to varying levels of mold in their

> environment.

> I really thought that describing " Sick Thermal Syndrome " or being

> exposed to mold in Hitlers Bunker was kind of interesting, in

> addition to all my other weird mold experiences, but nope.

> Just denial and contradiction for the most part.

> -