Re: ERIK: Everything you wanted to know the mold paradigm

[Guest guest]

On Behalf Of erikmoldwarrior

I think Dr S. performed an incredible service by " colloqualizing "

his information to the greatest extent possible in an effort to make

it accessible to the greatest number of people.You should try to read his

technical papers! I can barely able get through three words before I'm

totally stymied.This is a difficult subject, or average doctors would

already understand it, and the folksy style is far easier that the

usual " Shoemakereese " that almost nobody can understand.

Hello :

, First let me start off by saying that I do respect Dr. Shoemaker and

all of his hard work and research. I also believe that his book Mold

Warriors is superb, the foremost book on the subject. Unfortunately, not

everyone can understand certain sections of his books, cognitive function

notwithstanding. I am so glad that your " plan of action " works for you to

the extent that it does. Unfortunately the one size fits all plan, is not

really one that will work for all and I will explain that in a bit. We all

know that we have to keep our living and work environment as healthy as

possible and must do our best to avoid contaminated areas and plumes. I

think this is all that can be asked of anyone.

You are a perfect example of both sides of the coin, the total avoidance has

worked, even to the point that you have mentioned, you can detect low doses.

But even with all of this, you still have taken in your words " a slam " . Thank

you for sharing that. This also goes to show that this is unavoidable, even

for the most knowledgeable among us.

Since I have not been evaluated by Dr. Shoemaker I do not know what my

HLA-DR is, or genotype. Since you have not seen Dr. Shoemaker (I am assuming

you have not) do you know what your genotype is? The reason for my asking

and I will quote directly from his book and as a matter of fact your chapter

where he speaks of you, " The Stachysterian " .

(Page 425, Mold at ground zero for CFS)

" The true story to follow you'll read how one person found a way to reduce

his multiple health symptoms by avoiding mold exposure. He represents a

group of people who likely don't have biotoxin illness from mold, but their

illness is still caused by mold. For the 25 percent of people with a genetic

basis for mold toxin illness, and therefore, absence of any significant self

healing once ill, the approach of the " stachysterian " , , to

restoring health will never work. But for many of the remaining 75 percent

of the population, some of whom have illness from mold and initial

sensitivity to mold toxins, 's story makes him a mold warrior. "

(Page 449, In the end)

" For 25 percent of our pollution with mold susceptible genotypes and

exposure to indoor resident toxigenic fungi, no mold avoidance protocols

will reduce symptoms. For those like , extreme mold avoidance is a

successful strategy for a better life. The point of this chapter is simple,

we've come along way since 's Incline Village experience. We can show

susceptibility to chronic mold illness that won't improve with mold

avoidance with a genetic blood test. Mold illness, like 's, adds to the

public health burden beyond the genetic basis of chronic cytokine effects

from biotoxins. "

, I'm not attacking what you have done, kudu's to you and I sincerely

hope that this works for many out there. Unfortunately for many either here

on the board or off who do have the " dreaded genotype " seeking a pristine

environment is really moot, avoidance is always the key to helping, even at

the extreme, but for some it will not be enough. I think these two quotes

are very important and should not be left out, for those that suffer from

biotoxin illness.

Each individual is diagnosed and treated solely for their conditions and

genotype. Most doctors out there that are treating this clearly state, what

may work for one, may not work for another and there are some that it will

not work at all.

Hopefully, the doctors that you saw in 1985 when you were very sick have

learned something along the way, whether they admit it to you or not.

Opinions, thoughts and science change daily.

Rosie

[Guest guest]

" healthier4all " wrote:

> , First let me start off by saying that I do respect Dr.

Shoemaker and all of his hard work and research. I also believe that

his book Mold Warriors is superb, the foremost book on the

subject.

> You are a perfect example of both sides of the coin, the total

avoidance has worked, even to the point that you have mentioned, you

can detect low doses. But even with all of this, you still have

taken in your words " a slam " . Thank you for sharing that. This also

goes to show that this is unavoidable, even for the most

knowledgeable among us.

> Since I have not been evaluated by Dr. Shoemaker I do not know

what my HLA-DR is, or genotype. Since you have not seen Dr.

Shoemaker (I am assuming you have not) do you know what your

genotype is? The reason for my asking and I will quote directly from

his book and as a matter of fact your chapter where he speaks of

you, " The Stachysterian " .

> (Page 425, Mold at ground zero for CFS)

" The true story to follow you'll read how one person found a way to

reduce his multiple health symptoms by avoiding mold exposure. He

represents a group of people who likely don't have biotoxin illness

from mold, but their illness is still caused by mold. For the 25

percent of people with a genetic basis for mold toxin illness, and

therefore, absence of any significant self healing once ill, the

approach of the " stachysterian " , , to restoring health

will never work. But for many of the remaining 75 percent of the

population, some of whom have illness from mold and initial

sensitivity to mold toxins, 's story makes him a mold warrior. "

>

(Page 449, In the end)

> " For 25 percent of our pollution with mold susceptible genotypes and

exposure to indoor resident toxigenic fungi, no mold avoidance

protocols will reduce symptoms. For those like , extreme mold

avoidance is a successful strategy for a better life. The point of

this chapter is simple, we've come along way since 's Incline

Village experience. We can show susceptibility to chronic mold

illness that won't improve with mold avoidance with a genetic blood

test. Mold illness, like 's, adds to the public health burden

beyond the genetic basis of chronic cytokine effects from

biotoxins. "

>

> , I'm not attacking what you have done, kudu's to you and I

sincerely hope that this works for many out there. Unfortunately for

many either here on the board or off who do have the " dreaded

genotype " seeking a pristine environment is really moot, avoidance

is always the key to helping, even at the extreme, but for some it

will not be enough. I think these two quotes are very important and

should not be left out, for those that suffer from biotoxin illness.

>

> Each individual is diagnosed and treated solely for their

conditions and genotype. Most doctors out there that are treating

this clearly state, what may work for one, may not work for another

and there are some that it will not work at all.

> Hopefully, the doctors that you saw in 1985 when you were very

sick have learned something along the way, whether they admit it to

you or not.

Opinions, thoughts and science change daily.

- Rosie

_______________________________________________

By their continued disinterest in Dr Shoemakers work, I would judge

that the doctors I have contacted since '85 have learned very little.

While saying that you have respect for Dr Shoemakers work, by

wishing for my silence upon these matters, you appear to believe a

description of mold experience by someone who was a prototype for

the illness of " Chronic Fatigue Syndrome " is without merit and

inapplicable to others.

Where does this repetitive " One Size Fits All " idea come from?

Are you referring to my conviction that " Making a special effort at

avoiding mold is better than not " ?

Other than that, everything I have ever said in all the years I've

been in this group is that mold lifestyling is a balancing act of

variable factors which include an individual PIR that can possibly

be reduced if avoidance is successful enough, or increased if

exposure exceeds personal tolerance. Does that sound like a

dangerous " One Size Fits All " Svengalian strategy that I am

attempting to shove down unsuspecting gullible throats of people I

have an agenda of trying to mislead?

Advising people to take action commensurate with their personal

needs scarcely constitutes telling anyone to do anything at all, let

alone being a single fixed invariable strategy that applies to all.

I have said that the strategy I employ is to refine my ability to

detect low levels in order to manage my reactivities better.

When Dr Shoemaker asked me for my story, I put off having my HLA

tested because I felt that my example holds inherent value for

others no matter what their genetic susceptibility is.

Even the most extreme mold responder is better off by putting extra

effort into mold avoidance.

I describe finding out what it is like to get clear. Then using

the heightened sensitivity to better determine where low level

exposures are coming from - and observing the relative shift of

symptomology to get an idea of how much I might be able to improve

at a lesser level of exposure.

I didn't think anyone would be so self-destructively eager to

reject what I imagined was a fairly " common sense " proposal of self

testing by individualized response that they would trash the concept

even if I personally had no more genetic susceptibility of having a

sniffle that I wanted to get rid of.

I told Dr Shoemaker that based upon my experience, I must surely

have the dreaded genotype but that no matter what the result may be,

I would still have to live by the dictates of my own reactivity.

If the HLA indicated anything less, it would make no difference to

me or alter the actions I must take. If the HLA indicated that I

were more susceptible, that would not take away what extreme

avoidance has accomplished for me.

Over the course of time, it became apparent that other people are

not like me, do not trust their own perceptions, and would rather

choose to fall apart than simply make the experiment to find out if

they might take charge of their own mold exposure situation - and

seized upon that statement from Mold Warriors to avoid making a

cursory trial of self testing.

So Dr Shoemaker finally demanded that I quit putting it off and

have the HLA done:

HLA DR by PCR 4-3-53 and 7-2-53.

I do indeed have the double dreaded mold gene.

It turns out that despite being an extreme mold responder, I have

taken better control of my illness simply because I make a more

concerted effort than others with similar genetic susceptibility.

And everyone who fixated upon the notion that I am not among the

25% as an excuse to reject a very basic " concerted avoidance is

better than not " approach only deprived themselves of information

that turned out to be relevant after all - and just shot themselves

in the foot.

-

[Guest guest]

NONE of us are experts here, all we can do is share our knowledge

and if it helps someone, GREAT!

what we need to remember is that it effects us all different, what

works for some may not work for others. and everyones circumstances

are different. with some people it effects theri ability to think

clearly and they wouldnt know the what to do if it slapped them in

the face. in my second home, when I found out it was something in the

home, thats all it took because I felt like I was going to die if I

spent any more time in that home. I moved back into my first home,

realized it was there too, but I didn't want to move out and it took

my girls makeing me, even thought my symptoms were far worse than

when I lived there the first time, with exposure, re-exposure and re-

exposure. mianly I did not want to leave because I knew that meant

liveing with family and I was such a mess I just wanted to be alone

and let it finish its job,I had became addicted to it with withdrawel

symptoms when I left. my ears hurt so bad the slightest noise made my

body tence, I was seeing, black flashes that werent there , I hadn't

been functioning mentally for several years but didn't even realize

it because I couldn't consentrate long enough to put any reasonable

thoughts together. and the main reason I pratice advoidence now is

because theres no doctors I can find and Im now to poor to get to

far, and I have been givin so many drugs that had bad effects that Im

gun shy, that includes many asthma inhalers. so, I know I just sift

through the info and pick out what helps me, and IM so glad I came to

this sight and Im so thankful to have KC and Sharon around, because

with out them I'd still be so lost. no one has to follow anyone elses

way of thinking, we just need to be there for each other. I dont know

about anyone else but I dont have many friends around that I haven't

chased off because theri lack of understanding that theri perfume,

hair products, underarm deoderant, body lotion, exc. is not something

I can tolerate. and no matter how you approch this subject with them,

they take it personally. now, I will say that you all smell ok to me

and I hope you stick

around.

, some people have faught all theri lives for what they have and

its hard to walk away, sometimes it takes getting to the point of

thinking your dieing to do that. weather its right or wrong is some

times besides the point. it sounds like Rosie has a handle on her

situation and maybe shes keeping herself from getting any

sicker.who's to say that if she left her home, she could end up in a

worse one. I have cronic sinusitis, that means sometimes my smeller

doesn't work at all but I still fell the effects of a MCS attack.

>

> > , First let me start off by saying that I do respect Dr.

> Shoemaker and all of his hard work and research. I also believe

that

> his book Mold Warriors is superb, the foremost book on the

> subject.

> > You are a perfect example of both sides of the coin, the total

> avoidance has worked, even to the point that you have mentioned,

you

> can detect low doses. But even with all of this, you still have

> taken in your words " a slam " . Thank you for sharing that. This also

> goes to show that this is unavoidable, even for the most

> knowledgeable among us.

> > Since I have not been evaluated by Dr. Shoemaker I do not know

> what my HLA-DR is, or genotype. Since you have not seen Dr.

> Shoemaker (I am assuming you have not) do you know what your

> genotype is? The reason for my asking and I will quote directly

from

> his book and as a matter of fact your chapter where he speaks of

> you, " The Stachysterian " .

>

> > (Page 425, Mold at ground zero for CFS)

> " The true story to follow you'll read how one person found a way

to

> reduce his multiple health symptoms by avoiding mold exposure. He

> represents a group of people who likely don't have biotoxin illness

> from mold, but their illness is still caused by mold. For the 25

> percent of people with a genetic basis for mold toxin illness, and

> therefore, absence of any significant self healing once ill, the

> approach of the " stachysterian " , , to restoring health

> will never work. But for many of the remaining 75 percent of the

> population, some of whom have illness from mold and initial

> sensitivity to mold toxins, 's story makes him a mold warrior. "

> >

> (Page 449, In the end)

> > " For 25 percent of our pollution with mold susceptible genotypes

and

> exposure to indoor resident toxigenic fungi, no mold avoidance

> protocols will reduce symptoms. For those like , extreme mold

> avoidance is a successful strategy for a better life. The point of

> this chapter is simple, we've come along way since 's Incline

> Village experience. We can show susceptibility to chronic mold

> illness that won't improve with mold avoidance with a genetic blood

> test. Mold illness, like 's, adds to the public health burden

> beyond the genetic basis of chronic cytokine effects from

> biotoxins. "

> >

> > , I'm not attacking what you have done, kudu's to you and I

> sincerely hope that this works for many out there. Unfortunately

for

> many either here on the board or off who do have the " dreaded

> genotype " seeking a pristine environment is really moot, avoidance

> is always the key to helping, even at the extreme, but for some it

> will not be enough. I think these two quotes are very important

and

> should not be left out, for those that suffer from biotoxin

illness.

> >

> > Each individual is diagnosed and treated solely for their

> conditions and genotype. Most doctors out there that are treating

> this clearly state, what may work for one, may not work for another

> and there are some that it will not work at all.

> > Hopefully, the doctors that you saw in 1985 when you were very

> sick have learned something along the way, whether they admit it to

> you or not.

> Opinions, thoughts and science change daily.

> - Rosie

> _______________________________________________

>

>

> By their continued disinterest in Dr Shoemakers work, I would judge

> that the doctors I have contacted since '85 have learned very

little.

>

> While saying that you have respect for Dr Shoemakers work, by

> wishing for my silence upon these matters, you appear to believe a

> description of mold experience by someone who was a prototype for

> the illness of " Chronic Fatigue Syndrome " is without merit and

> inapplicable to others.

>

> Where does this repetitive " One Size Fits All " idea come from?

> Are you referring to my conviction that " Making a special effort at

> avoiding mold is better than not " ?

> Other than that, everything I have ever said in all the years I've

> been in this group is that mold lifestyling is a balancing act of

> variable factors which include an individual PIR that can possibly

> be reduced if avoidance is successful enough, or increased if

> exposure exceeds personal tolerance. Does that sound like a

> dangerous " One Size Fits All " Svengalian strategy that I am

> attempting to shove down unsuspecting gullible throats of people I

> have an agenda of trying to mislead?

> Advising people to take action commensurate with their personal

> needs scarcely constitutes telling anyone to do anything at all,

let

> alone being a single fixed invariable strategy that applies to all.

> I have said that the strategy I employ is to refine my ability to

> detect low levels in order to manage my reactivities better.

>

> When Dr Shoemaker asked me for my story, I put off having my HLA

> tested because I felt that my example holds inherent value for

> others no matter what their genetic susceptibility is.

> Even the most extreme mold responder is better off by putting extra

> effort into mold avoidance.

>

> I describe finding out what it is like to get clear. Then using

> the heightened sensitivity to better determine where low level

> exposures are coming from - and observing the relative shift of

> symptomology to get an idea of how much I might be able to improve

> at a lesser level of exposure.

>

> I didn't think anyone would be so self-destructively eager to

> reject what I imagined was a fairly " common sense " proposal of self

> testing by individualized response that they would trash the

concept

> even if I personally had no more genetic susceptibility of having a

> sniffle that I wanted to get rid of.

> I told Dr Shoemaker that based upon my experience, I must surely

> have the dreaded genotype but that no matter what the result may

be,

> I would still have to live by the dictates of my own reactivity.

> If the HLA indicated anything less, it would make no difference to

> me or alter the actions I must take. If the HLA indicated that I

> were more susceptible, that would not take away what extreme

> avoidance has accomplished for me.

> Over the course of time, it became apparent that other people are

> not like me, do not trust their own perceptions, and would rather

> choose to fall apart than simply make the experiment to find out if

> they might take charge of their own mold exposure situation - and

> seized upon that statement from Mold Warriors to avoid making a

> cursory trial of self testing.

> So Dr Shoemaker finally demanded that I quit putting it off and

> have the HLA done:

> HLA DR by PCR 4-3-53 and 7-2-53.

> I do indeed have the double dreaded mold gene.

> It turns out that despite being an extreme mold responder, I have

> taken better control of my illness simply because I make a more

> concerted effort than others with similar genetic susceptibility.

>

> And everyone who fixated upon the notion that I am not among the

> 25% as an excuse to reject a very basic " concerted avoidance is

> better than not " approach only deprived themselves of information

> that turned out to be relevant after all - and just shot themselves

> in the foot.

> -

>

[Guest guest]

> , some people have faught all theri lives for what they have

and its hard to walk away, sometimes it takes getting to the point of

thinking your dieing to do that. weather its right or wrong is some

times besides the point. it sounds like Rosie has a handle on her

situation and maybe shes keeping herself from getting any

sicker.who's to say that if she left her home, she could end up in a

worse one. I have cronic sinusitis, that means sometimes my smeller

doesn't work at all but I still fell the effects of a MCS attack.

>

That's what it took for me! Thinking that I was going to die.

I sure wish I had access to someone who could have told me what I was

facing by not getting out in time - instead of being surrounded by

people that told me my inclination to bail out was crazy and unfounded.

I fought for everything I had, and by trying to keep it, I lost even

more - I lost my world when I became so reactive that standing next to

a person with Stachy on their clothing is too much for me.

And it could have been avoided if someone like me had been around to

say just how rotten it can be. I was ready to hear it. But there was

no one.

The reason for systematic self testing is so you know what you are

looking for if you make a move.

It's tough to talk a prospective landlord into letting you sleep in a

place before you rent it - but that's what you have to do.

As a moldie, it's important to know that you have to ask for this or

you can't even take a chance on renting.

-

[Guest guest]

>

>

> > , some people have faught all theri lives for what they have

> and its hard to walk away, sometimes it takes getting to the point

of

> thinking your dieing to do that. weather its right or wrong is some

> times besides the point. it sounds like Rosie has a handle on her

> situation and maybe shes keeping herself from getting any

> sicker.who's to say that if she left her home, she could end up in

a

> worse one. I have cronic sinusitis, that means sometimes my

smeller

> doesn't work at all but I still fell the effects of a MCS attack.

>

>

>

> That's what it took for me! Thinking that I was going to die.

> I sure wish I had access to someone who could have told me what I

was

> facing by not getting out in time - instead of being surrounded by

> people that told me my inclination to bail out was crazy and

unfounded.

>

> I fought for everything I had, and by trying to keep it, I lost

even

> more - I lost my world when I became so reactive that standing next

to

> a person with Stachy on their clothing is too much for me.

> And it could have been avoided if someone like me had been around

to

> say just how rotten it can be. I was ready to hear it. But there

was

> no one.

> The reason for systematic self testing is so you know what you are

> looking for if you make a move.

> It's tough to talk a prospective landlord into letting you sleep in

a

> place before you rent it - but that's what you have to do.

> As a moldie, it's important to know that you have to ask for this

or

> you can't even take a chance on renting.

> -

> believe me, I know what your saying, I wish my doctor would of

reconized my first symptoms. I wonder if he would of, if I would of

thought he was nuts,lols. just like people haveing a hard time

believeing us who have been through this, I may of had a hard time

believeing it back than. but on the other hand, I knew something was

not right with the first symptoms I had,it was something I had never

experience before in my life and it was severe, and if some one would

of said to me " leave your house a few days and see if you fell

better " (and I would have), that would of been enough to get me to

search for more info. I can say this, if you know you have toxic

molds in your home, do the research on each type, because Im liveing

proof that even low amounts to stachoboctrys mold(and there are

others)can sneak up on you in ways you might not notice until its to

late. I had some severe symptoms right off the bat, and ended up with

some severe illnesses that were so sneaky, I didn't notice them until

it was to late to do any good.