They're not laughing anymore

February 15, 2006

<jenbooks13@...> wrote:

>

> Actually I'm of the view of you and . Maybe I mis-stated my

view. I believe that most of CFS is bacterial in origin, and that the

resulting immmune suppression reactivates latent viruses. I believe

borrelia and babesia are epidemic and a cause of much CFS today.

" " is the Incline Village mold maniac. " " is

the other guy who probably makes more sense than I do.

When Dr Cheney and insisted that CFS was viral, and I

asked " what about all the people who caught the viral infection but

recovered? Wouldn't that mean the the true cause of CFS is whatever

DIFFERENCE that exists between those who recovered and those who did

not? " " Wouldn't a bacteria be an organism that cares a great deal

about mold? "

So I set out from the beginning to look for that difference.

And when it appeared that all the CFSers I accompanied into moldy

places suffered in the same inexplicable way that doctor said

was " impossible " , I explained that this seemed to be a common problem:

" Why would a virus care specifically about mold? "

Dr Cheney and Dr both told me that a virus wouldn't cause

such a specific thing as the phenomenon that I was seeing.

So as far as I was concerned, they were, in effect saying that even

though they were looking at a virus, they were ignoring an important

portion of the illness because their pathogen wouldn't have this

specific effect.

My view is: " If you tell me that a virus wouldn't have this effect,

but the effect is happening, then perhaps you should consider that it

is not a virus - at least not by itself " .

However, it appears that RNA dysregulation from retroviruses can

alter pathways in unexpected ways, so it may well be that CFS is the

retrovirus they always said it was - and that those of us with a

genetic susceptibility to mold had this response " unveiled " .

That could well put the ball right back in their court.

I haven't made any particular claims except that my intense reactivity

and early identification of an emerging mold phenomenon gave me a

unique vantage point to witness the spread of something of which all

of the many people I contacted who were investigating CFS were

completely unaware and considered impossible at the time.

The bottom line is that I watched " Mold Illness " spread in exactly

the same way I saw " CFS " progress. From a point in which I was told

in no uncertain terms that I was virtually the only crazy person on

the planet, to a few dozen more, - to being a global phenomenon, epic

in scope - with all people, all doctors insisting that this wasn't

happening until they couldn't ignore the obvious any more.

As I said, they laughed then, but they're not laughing anymore.

-

February 23, 2006

" robin ann " wrote:

> Hi (moldwarrior). I just noticed your HLA DR numbers and I

assume that the second number in that string is the DQ gene number.

So it looks to me like you have HLA DQ2 and that is one of the two

proven celiac genes... The other celiac

> gene is DQ8.

>

> Although you may not have symtoms to wheat or other grains or

beer, you most definitely have the gene that says something is

haywire in your immune system having to do with gluten.. it may not

have expressed itself yet or at least expressed it ina way that is

noticeable to you..

>

> Maybe I'm missing something but if you have HLA DQ2, you are most

certainly susceptible to gluten intolerance. All my life I never had

symptoms and then when I had all these other " insults " and, well,

all hell broke loose..

>

> ~robin

Robin. Same here. I never had noticeable problems with gluten

until mold illness set in. But since doctors don't believe in mold

illness, when that genetic susceptibility was unveiled from biotoxin

exposure, doctors only looked at " the car on the bridge " instead of

the agent which undermined the ability of the structure to carry the

same load that it supported prior to being " triggered "

The amazing thing is that extreme mycotoxin avoidance allowed me to

revert to my old beer drinking - bread eating ways.

I thought that doctors might find this to be of some slight

interest, but the way they turn and run has unveiled a strange

effect which greets information which threatens a paradigm that goes

beyond just my experience. It is the automatic denial that meets

unfamiliar abnormalities whether the abnormality is verifiable or

not.

The person presenting it with the " Who the HELL are YOU? " response

no matter how compelling the evidence. If you lack the

perceived " credentials " to be given respect, not only is the

information rejected, regardless of whether is can be substantiated -

but your insistance that the peculiarity is worthy of interest is

seen as " presumptuous arrogance " for merely daring to question the

entrenched paradigm.

Dr Shoemaker has determined that the celiac alleles are on the same

pathway and initiated by a cytokine cascade (if I understand this

correctly). I just had the strange practical experience, noticed

the abnormality to their model - and asked doctors to look

into " why " biotoxin exposure took precedence, but as a class, those

who would seemingly be the very ones to ask, literally responded

with " Who the HELL are YOU? We don't answer to arrogant people who

dare to ask " why " without peer reviewed evidence backing them up "

It is a kind of automatic denial system directed at ruling out any

anomalies that patients attempt to convey for possible investigation.

It was weird to find that doctors would literally turn and run from

someone who said " this helps " . It was even MORE bizarre to find

sufferers in the same dire condition were ever MORE dismissive

simply because the information didn't come from a doctor.

I believe that this is the true source of the inexplicable

intransigence from doctors that baffles CFSers as to how otherwise

caring people could be so cruel. It is the same phenomenon

manifested by sufferers - and they too are completly unaware of the

denialism they are practicing.

I suspect that the increased ambient levels of specific mycotoxins

in cities may be a factor in causing the epidemic of cryptoccocus

neoformans in urban children when the same exposure, although rarer

outside the city - fails to have the same result.

Cryptococcus is " supposed to strike only the immune suppressed " so

when it hits " healthy children " , it is seen as a fluke in individual

cases - and unworthy of attention since it was " just a fluke " .

The idea of blaming Cryptococcus on increased pigeon exposure is

another example of " cars on the bridge " and this line of

thinking " is for the birds " .

When urban children as a class suffer from a vastly increased risk

of acquiring an illness that doesn't occur in healthy people when

exposed to this pathogen, this anomaly is supposed to stimulate

doctors into proactive research.

But as we have seen, the " interest " response to abnormalities is an

extremely rare trait in doctors - presumable a recessive genetic

predisposition which requires an inflammatory cascade of pissed-off

patients to stimulate.

-

This article is from the WebMD

Medical News Archive

Fungal Infection Appears Common Among Urban Kids

By Salynn Boyles

WebMD Medical News Reviewed By Dr. Tonja Wynn Hampton

May 10, 2001 -- Most city dwellers have strong opinions about

pigeons. Some see them as harmless, flying urban friends, while to

others they are the equivalent of rats with wings.

But are they a hazard to human health?

Breathing air contaminated with pigeon droppings is believed to be

responsible for the most common central nervous system disease among

patients with AIDS. Now a study from New York suggests the fungal

infection responsible for the disease is common among healthy

children living in urban areas.

After conducting a special blood test, researchers from the Albert

Einstein College of Medicine found that 70% of tested children over

the age of 5 had been infected with the fungus Cryptococcus

neoformans, and over half of those as young as age 2 had been

infected. It is not yet clear whether people who do not live in

cities have the same level of exposure, they say, or if healthy

people whose immune systems are not compromised -- as is the case

with AIDS patients -- develop infection-related illnesses.

" We were very surprised to find that cryptococcal exposure was so

high in these children, " study author L. Goldman, MD, tells

WebMD. " At least in urban areas like the Bronx, exposure appears to

occur very early in life, and it is probably associated with signs

and symptoms we haven't identified yet. " Goldman is an associate

professor of pediatrics at Albert Einstein College of Medicine.

If the fungal infection does cause illness among otherwise healthy

people, it is likely that the symptoms are being blamed on something

else, Goldman says.

" Children with this infection, for example, could possibly develop

flu-like symptoms that a doctor might assume to be a virus, " he

says. " Again, we don't know yet what symptoms are associated with

this infection, or if there are any symptoms associated with it.

Those studies have not been done. "

Fungal specialist Guadalupe Reyes, PhD, of Cleveland's Case Western

Reserve University Center for Medical Mycology, says it is possible

that fungus-related infections do cause unrecognized illnesses among

children and adults with healthy immune systems. She says failure to

recognize fungal infection is a common and serious problem among

patients whose immune systems are compromised.

" This infection is very easy to diagnose, but doctors often don't

think about fungi, " she says. " Patients are given antibiotics, which

obviously don't work, because they have a fungal infection, [not a

bacterial infection]. "

In the study, published in the May issue of the journal Pediatrics,

blood samples from 185 children from the Bronx who ranged in age

from 1 week to 21 years were evaluated for C. neoformans infection.

Few children under the age of 2 had been infected, but 56% of those

between the ages of 2 and 5 carried the infection. Antibodies for

the infection were found to persist throughout childhood, suggesting

that reinfection might be common.

" We don't know the long-term consequences of infection, but it is

clear form our findings that many children are being exposed, making

the infection a potential cause of common childhood disease, "

Goldman says. " Our goal now is to learn what occurs in instances of

acute infection and to identify ways to combat it. "

The findings could have implications for those trying to develop a

vaccine designed to prevent infection with C. neoformans. It has

been suggested that such a vaccine could prevent the life-

threatening diseases associated with infection in AIDS patients and

others with compromised immune systems.

" If, as our study indicates, most people are already infected at a

very early age, then a vaccine approach to preventing infection

probably won't work, " Goldman says.

February 23, 2006

, you probably should stay away from grains anyway.

Relatives of those with obvious celiac still have manifestations if

you biopsy their guts, their villi are somewhat damaged.

You might not have clinical symptoms but you are taking a risk imo.

>

> > Hi (moldwarrior). I just noticed your HLA DR numbers and I

> assume that the second number in that string is the DQ gene number.

> So it looks to me like you have HLA DQ2 and that is one of the two

> proven celiac genes... The other celiac

> > gene is DQ8.

> >

> > Although you may not have symtoms to wheat or other grains or

> beer, you most definitely have the gene that says something is

> haywire in your immune system having to do with gluten.. it may not

> have expressed itself yet or at least expressed it ina way that is

> noticeable to you..

> >

> > Maybe I'm missing something but if you have HLA DQ2, you are most

> certainly susceptible to gluten intolerance. All my life I never had

> symptoms and then when I had all these other " insults " and, well,

> all hell broke loose..

> >

> > ~robin

>

> Robin. Same here. I never had noticeable problems with gluten

> until mold illness set in. But since doctors don't believe in mold

> illness, when that genetic susceptibility was unveiled from biotoxin

> exposure, doctors only looked at " the car on the bridge " instead of

> the agent which undermined the ability of the structure to carry the

> same load that it supported prior to being " triggered "

> The amazing thing is that extreme mycotoxin avoidance allowed me to

> revert to my old beer drinking - bread eating ways.

> I thought that doctors might find this to be of some slight

> interest, but the way they turn and run has unveiled a strange

> effect which greets information which threatens a paradigm that goes

> beyond just my experience. It is the automatic denial that meets

> unfamiliar abnormalities whether the abnormality is verifiable or

> not.

> The person presenting it with the " Who the HELL are YOU? " response

> no matter how compelling the evidence. If you lack the

> perceived " credentials " to be given respect, not only is the

> information rejected, regardless of whether is can be substantiated -

> but your insistance that the peculiarity is worthy of interest is

> seen as " presumptuous arrogance " for merely daring to question the

> entrenched paradigm.

> Dr Shoemaker has determined that the celiac alleles are on the same

> pathway and initiated by a cytokine cascade (if I understand this

> correctly). I just had the strange practical experience, noticed

> the abnormality to their model - and asked doctors to look

> into " why " biotoxin exposure took precedence, but as a class, those

> who would seemingly be the very ones to ask, literally responded

> with " Who the HELL are YOU? We don't answer to arrogant people who

> dare to ask " why " without peer reviewed evidence backing them up "

> It is a kind of automatic denial system directed at ruling out any

> anomalies that patients attempt to convey for possible investigation.

> It was weird to find that doctors would literally turn and run from

> someone who said " this helps " . It was even MORE bizarre to find

> sufferers in the same dire condition were ever MORE dismissive

> simply because the information didn't come from a doctor.

> I believe that this is the true source of the inexplicable

> intransigence from doctors that baffles CFSers as to how otherwise

> caring people could be so cruel. It is the same phenomenon

> manifested by sufferers - and they too are completly unaware of the

> denialism they are practicing.

>

> I suspect that the increased ambient levels of specific mycotoxins

> in cities may be a factor in causing the epidemic of cryptoccocus

> neoformans in urban children when the same exposure, although rarer

> outside the city - fails to have the same result.

> Cryptococcus is " supposed to strike only the immune suppressed " so

> when it hits " healthy children " , it is seen as a fluke in individual

> cases - and unworthy of attention since it was " just a fluke " .

> The idea of blaming Cryptococcus on increased pigeon exposure is

> another example of " cars on the bridge " and this line of

> thinking " is for the birds " .

> When urban children as a class suffer from a vastly increased risk

> of acquiring an illness that doesn't occur in healthy people when

> exposed to this pathogen, this anomaly is supposed to stimulate

> doctors into proactive research.

> But as we have seen, the " interest " response to abnormalities is an

> extremely rare trait in doctors - presumable a recessive genetic

> predisposition which requires an inflammatory cascade of pissed-off

> patients to stimulate.

> -

>

> This article is from the WebMD

> Medical News Archive

>

> Fungal Infection Appears Common Among Urban Kids

>

> By Salynn Boyles

> WebMD Medical News Reviewed By Dr. Tonja Wynn Hampton

>

> May 10, 2001 -- Most city dwellers have strong opinions about

> pigeons. Some see them as harmless, flying urban friends, while to

> others they are the equivalent of rats with wings.

>

> But are they a hazard to human health?

>

> Breathing air contaminated with pigeon droppings is believed to be

> responsible for the most common central nervous system disease among

> patients with AIDS. Now a study from New York suggests the fungal

> infection responsible for the disease is common among healthy

> children living in urban areas.

>

> After conducting a special blood test, researchers from the Albert

> Einstein College of Medicine found that 70% of tested children over

> the age of 5 had been infected with the fungus Cryptococcus

> neoformans, and over half of those as young as age 2 had been

> infected. It is not yet clear whether people who do not live in

> cities have the same level of exposure, they say, or if healthy

> people whose immune systems are not compromised -- as is the case

> with AIDS patients -- develop infection-related illnesses.

>

> " We were very surprised to find that cryptococcal exposure was so

> high in these children, " study author L. Goldman, MD, tells

> WebMD. " At least in urban areas like the Bronx, exposure appears to

> occur very early in life, and it is probably associated with signs

> and symptoms we haven't identified yet. " Goldman is an associate

> professor of pediatrics at Albert Einstein College of Medicine.

>

> If the fungal infection does cause illness among otherwise healthy

> people, it is likely that the symptoms are being blamed on something

> else, Goldman says.

>

> " Children with this infection, for example, could possibly develop

> flu-like symptoms that a doctor might assume to be a virus, " he

> says. " Again, we don't know yet what symptoms are associated with

> this infection, or if there are any symptoms associated with it.

> Those studies have not been done. "

>

> Fungal specialist Guadalupe Reyes, PhD, of Cleveland's Case Western

> Reserve University Center for Medical Mycology, says it is possible

> that fungus-related infections do cause unrecognized illnesses among

> children and adults with healthy immune systems. She says failure to

> recognize fungal infection is a common and serious problem among

> patients whose immune systems are compromised.

>

> " This infection is very easy to diagnose, but doctors often don't

> think about fungi, " she says. " Patients are given antibiotics, which

> obviously don't work, because they have a fungal infection, [not a

> bacterial infection]. "

>

> In the study, published in the May issue of the journal Pediatrics,

> blood samples from 185 children from the Bronx who ranged in age

> from 1 week to 21 years were evaluated for C. neoformans infection.

> Few children under the age of 2 had been infected, but 56% of those

> between the ages of 2 and 5 carried the infection. Antibodies for

> the infection were found to persist throughout childhood, suggesting

> that reinfection might be common.

>

> " We don't know the long-term consequences of infection, but it is

> clear form our findings that many children are being exposed, making

> the infection a potential cause of common childhood disease, "

> Goldman says. " Our goal now is to learn what occurs in instances of

> acute infection and to identify ways to combat it. "

>

> The findings could have implications for those trying to develop a

> vaccine designed to prevent infection with C. neoformans. It has

> been suggested that such a vaccine could prevent the life-

> threatening diseases associated with infection in AIDS patients and

> others with compromised immune systems.

>

> " If, as our study indicates, most people are already infected at a

> very early age, then a vaccine approach to preventing infection

> probably won't work, " Goldman says.

>

February 23, 2006

<jenbooks13@...> wrote:

>

> , you probably should stay away from grains anyway.

> Relatives of those with obvious celiac still have manifestations if

> you biopsy their guts, their villi are somewhat damaged.

> You might not have clinical symptoms but you are taking a risk imo.

>

Yes, I agree, I've been bad about that!

As soon as I had the capacity to return to my former life in any

way - I went right back to those behaviors that people implicated as

being " causative " , despite the long history of these factors utterly

failing to result in CFS in any consistent or noticeable way in the

past.

But despite my lack of discipline, the anomaly remains that the

biotoxin exposure appeared to be the more critical factor.

I feel like someone who became hyper reactive to peanuts, but as we

all know - you can't induce this type of reactivity by " eating too

many peanuts " and as soon as I found the agent which modulated

that " downstream response " , I went right back to enjoying my peanut

butter sandwiches as I had always done before.

It's back to " the bridge analogy " , for as much as people tell me

not to neglect the " cars on the bridge " , I keep wanting to restore

as many " stresses and stressors " to my life as possible - for this

is the condition that others refer to as " normal life " .

-

February 26, 2006

" robin ann " wrote:

> Okay the plot thickens. I just got my official HLA DR lab reports

back and it is confirmed: I have the same dreaded gene you have

. 4-3-53.

> Well, so here're two CFS patients with the same genes right there.

Cosmic twins :-)

> ~robin

Now if people remember my story about the Incline Village " Yuppie

Flu " epidemic, a lot of people got sick but many recovered.

So I asked Dr Cheney that if this illness didn't all strike us down

equally, then instead of implicating " Yuppie Flu " as the " cause " ,

that the real cause was whatever difference which existed between

those who recovered and those of us who went on to become " CFS " .

And because I knew from the start that I had an unusual response to

mold, that when I go into a moldy place and had a response, I could

look over at people who were diagnosed with CFS and see that THEY

were having a response as well - except they blamed their illness

exacerbation of chemicals, EMF's, barometric pressure, stress -

almost anything EXCEPT for what I knew it to be:

Mold.

And yes we were talking about Stachy - for it is a ubiquitous toxin

producer that I found to be present at the onset of famous clusters

of CFS and a driving force in my symptoms.

So this is why I keep saying that the people who I personally saw

at the beginning of the " CFS " phenomenon shared a strange

susceptibility to mycotoxin exposure that should be investigated.

Twenty years now and it still hasn't happened.

So it might just turn out to be a " Cosmic Cohort " if it ever gets

researched as should have been done right from the start.

Also, as I said to Dr Cheney - " I have an inexorable increasing

reactivity to mold that grows progressively worse no matter where I

live or how well I take care of myself " . When you talk about

someone " guaranteeing " there is no mold in a place - these concepts

are meaningless to me. Moving never accomplished more than altering

my level of response enought to know there was a " location

component " to use as a starting point to determine how to manage

this variable.

If moving could consistenly make a huge difference in CFS, we

probably would have more stories about " locations effect " by now

than we currently have.

Annettes " clue " to the same type of reactivity I have - is that

unpacking clothes that were stored in a moldy flat caused

exacerbation. When I talk about " extreme avoidance " , I mean that

standing next to a CFSer with mold on their clothing is something I

have to avoid - along with certain Eucalyptus groves, buildings,

objects and even entire towns or simply passing through these towns.

I have to maintain a consistently low level of response in order to

improve long term - and it isn't easy.

I had to adopt the strategies I was taught in the military to

survive under conditions of biological warfare.

This isn't a viable " therapy " that everyone can do, although a lot

of it can be applied to reduce overall exposure.

It's just a clue that CFS researcher flat-out refused to investigate

for twenty years, but that I took advantage of to free myself of an

amazing amount of disability which I could not control by other

means.

And to think that for simply stating this, I've taken more abuse

from CFSers than I ever got from doctors who deny CFS.

It looks like the reason why denialists never feel bad about

themselvses for the way they treat sick people is because they

honestly believe they are just being scientifically skeptical until

proven otherwise. This is an attitude CFSers well know, for no

matter how much evidence of abnormalities is presented, doctors

still insist that it is all meaningless and that the burden is upon

CFSers to prove their case rather than upon doctors to find out why

CFSers have so many abnormalitites.

Dr Shoemakers motto is " In the face of obvious abnormalities,

skepticism is inappropriate " and he proved that he lives up to his

words.

Now it will be interesting to see if my walking out of the ampligen

program and recovering by a mycotoxin avoidance protocol is a fluke

like everybody seemed to think, or maybe that perhaps I'm not

mistaken by making these observations and undertaking this bizarre

strategy.

-

February 26, 2006

>

> Now it will be interesting to see if my walking out of the ampligen

> program and recovering by a mycotoxin avoidance protocol is a fluke like

> everybody seemed to think, or maybe that perhaps I'm not mistaken by making

> these observations and undertaking this bizarre strategy.

> -

Thanks , And tell me how IS your health right now? Are you able to work

and play pretty well?

~robin

February 27, 2006

" robin ann " wrote:

> Thanks , And tell me how IS your health right now? Are you

able to work and play pretty well?

> ~robin

Since the moment I focused all my effort on avoiding perceived

exposure to trichothecene mycotoxins from Stachbotrys, I have

exerted a level of control over my illness that is so spectacular

that the degree of my recovery is taken by CFSers as proof that my

illness could not possibly be " True CFS " .

The irony of course, is that since I was one of the people

that " Original CFS " is based on, whatever I have is " CFS " in its

most original incarnation.

Dr Cheney asked me to volunteer to be in the 1988 CDC CFS

definition study group because I was the " purest case " and one of

the Incline originals - and then Dr re-diagnosed me again

in Sept 1997 as " Once again being the purest case of CFS " with all

the right markers for a response to ampligen.

If you are familiar with Beiths " CFS-CFIDS-ME " group dedicated

to uncovering the link between locations and illness exacerbation,

this can be seen as more evidence that others have noticed a

peculiar specificity to the environmental illness seen in an

undetermined number of CFS victims - and wish to research and

exploit this " locations effect " to the fullest possible benefit.

This is the avenue that I pursued instead of chemotherapy, and the

increasing numbers of people suffering from mycotoxicosis indicate

that I wasn't wrong to attempt to raise awareness

about " Stachybotrys Hysteria " and call myself " The StacHysterian " as

a mnemonic joke that had a serious intent behind it.

As I said in Mold Warriors, and as I told an NIH research assistant

during the 1999 " Original CFS cohort follow-up study " : I've been

out climbing mountains and I have permits to climb Mt Whitney next

month, and that's not too damned shabby for a person with Chronic

Fatigue Syndrome " .

Not a cure, since I've had to maintain an unbelievable degree of

avoidance, but far better than where I would have been otherwise.

The determined disinterest that supposedly motivated researchers

have applied to my experience is a startling indictment of an

underlying fundamental denialism inherent to their conceptual

framework and scientific methodology.

While they insist, " That's impossible " , I've been out taking

pictures of myself doing the impossible.

I thought that someday, someone might want to hear about this.

-

February 27, 2006

,

I am new to this group. I am interested in what you have been doing. I was in

Incline and South Lake during the outbreak. My friends were hit hard but I was

spared at the time. I went back to CA. Years later I was dxed with

Fibromyalgia after an auto accident. The fibro went away for about 1-2 years

and then reoccured with another accident. I don't remember what caused the

remission. If you would like to email me off list (so you don't repeat what you

may have already shared) I would be very interested in what you have done to

get better.

Lee

Re: They're not laughing anymore