Re: They're not laughing anymore

[Guest guest]

It would be interesting to find out how the aboriginals dealt with this....

what their traditional medicine is/was.

mjh

In a message dated 2/24/06 8:13:45 P.M. Eastern Standard Time,

grainwreck@... writes:

I also thought it was interesting in that above report to see how so many

aboriginal people are regularly stricken with this fungal disease as a

result of those trees.. the only ones to carry the Cryptococcus neoformans

var. gattii yeast in flowers, leaves, bark, and litter..

[Guest guest]

>

> My HLA DR is 4-3-53 and 7-2-53. Mold susceptible and highly increased

> risk of CFS. -

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. Thta's

the ONE dreaded gene in the dreaded catagory that says basically this

stuff'll kill you if you don't do something about it.. Again, that would

be the 7-2-53.

My other gene is 17-2-52A which is rated with exactly the same lousy risk

factor for mold susceptibility as your second gene is. There are four in

that catagory rather than the single dreaded choice.

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

twins :-)

And, man, I'm leaving for the mountains next week. I found an inexpensive

adobe/tile style studio up above 6200 feet. It's high in the Rockies of New

Mexico and the syle of architecture is all tile and that sort of thing. No

ductwork anywhere -- all radiant tile floor heating and fireplaces.. The

lady guarantees there's no mold. And to make it even drier, they've been

having that terrible drought. I hope I don't get in a fire! :-)

Just waiting for a laptop to arrive so I can download all my stuff and have

something for work on up there.

By the way, this is the worst time of the year for us dreaded types because

the Eucalyptus camaldulensis, the super tall trees with the long pointy

saber-like leaves, have started to flower. If you read this report you'll

see that the flowering times are the worst.

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=268004 & blobtype=pdf

I also thought it was interesting in that above report to see how so many

aboriginal people are regularly stricken with this fungal disease as a

result of those trees.. the only ones to carry the Cryptococcus neoformans

var. gattii yeast in flowers, leaves, bark, and litter..

That fact is quite curious to me because Aboriginals are known to have very

high rates of celiac disease -- they are late in evolution form the

hunter-gatherer types, something we evidently inherited with our genes

too... Northern types and native peoples are usaully at the highest risk for

carrying the genes because cultivated crops like grains were introduced so

late in our 100,000 old evolution and a lot of our brethren were selected

out.... Heck, grains and dairy only came around 10,000 years ago! And for

native tribes it's only been in their diets a few hundred years..

See you up in the mountains!

:-D

~robin

By the way, this is what you get if you're around these yeasts too long...

http://www.musa.org/fungal.asp

[Guest guest]

>

> It would be interesting to find out how the aboriginals dealt with

> this....

> what their traditional medicine is/was.

>

> mjh

Good one! ~robin

[Guest guest]

Hi Robin

I also am a 17-02-52A. I only have one bad gene though, and it is just the

" mold gene " not the " dreaded gene " , which maybe explains why I got better.

Heading to a mold free area is great, but it would be even better if you could

take some CSM. I have found it takes a while for your body to clear the

mycotoxins on it's own, even when you no longer have exposure. But CSM really

speeds up the process.

Doris

----- Original Message -----

From: robin ann

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. Thta's

the ONE dreaded gene in the dreaded catagory that says basically this

stuff'll kill you if you don't do something about it.. Again, that would

be the 7-2-53.

My other gene is 17-2-52A which is rated with exactly the same lousy risk

factor for mold susceptibility as your second gene is. There are four in

that catagory rather than the single dreaded choice.

[Guest guest]

> Hi Robin

> I also am a 17-02-52A. I only have one bad gene though, and it is just

> the " mold gene " not the " dreaded gene " , which maybe explains why I got

> better.

>

> Heading to a mold free area is great, but it would be even better if you

> could take some CSM. I have found it takes a while for your body to clear

> the mycotoxins on it's own, even when you no longer have exposure. But CSM

> really speeds up the process.

Thanks Doris. This sort of information is very useful to me!

And, yes, I am taking the CSM four times a day. I will also be taking

something similar to Diflucan (I forget name) once a day for a month since

the other lab work indicated I have a rather astounding colony of candida,

aspergillas and penicillium in my guts as well..

That surprised me as I am a person who is very fit and eat almost no sugars

or starches -- for years!! Those things have always bothered my digestion,

even fruit, and so I've tended toward meats and LOTS of vegetables for

years.

I assume your problem was an indoor mold? Oddly enough, I seem to be better

when I stay inside (away from those trees!) with all the air cleaners going.

I've always had air cleaners because I thought it was housedust mites that

were bothering me.. So the air's pretty clean in my house.

I'm packing for the Rockies right now. I'll be at 6200 feet pretty far away

from any big towns.. I'm packing clothes and books, of course, but do you

think these items will be a problem? I assume I can just shake things out

pretty good outside before I take up residence there. As I said, I'll be up

there at least a month and that's just got to be enough time to get rid of

any residual mold on clothes and so on... Right ? :-)

~robin, hopefully...

[Guest guest]

:

I don't think your stragety is bizarre - And I have no doubt

certain avoidances helped you improve.

In my case I called it a " narrow operating range " . And for years I

observed my own symptoms and hypersensivities, and I learned what

where and who I could tolerate, and what I could not, and I adjusted

to stay within certain tolerances the best I could.

And I took alot of abuse from Dr.s, friends and other (ill) people

for not conforming to their set of " norms, dogma'. (and

every set for every group was different...)

I guess it's best not to have a (religous) medical affiliation!.

Barb

>

> > 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.

> -

>

[Guest guest]

I didn't catch anything noticeable at the time. Around 2002, I was in an

accident and then developed FM symptoms. About that time I was tested for HHV6

and it showed past exposure. I did a round of anti-virals and other treatments

and the symptoms left only to resurface after another accident in late 2005.

My friends recovered over a long period of time but I don't think they really

completely recovered.

I have heard so many conflicting stories of what happened there. One web page I

ran across stated that there was an outbreak of a certain type of amoeba in the

Placerville water supply, another says it was EMF, others EBV, Mercury, etc.,

you know the drill. I wish I still had the link to the water supply story but

my computer has crashed more than once...sorry. You might be able to find

something about it if you look.

Even tho' mold exacerbates your sensitivities there must be something that

caused the sensitivity, correct? I'm just trying to learn at this point.

Lee

>By " spared " , did you catch the " Yuppie Flu " and recover, or not get

anything noticeable at the time and had onset later?

How are your friends doing?

[Guest guest]

" Leona Gibson " wrote:

> I have heard so many conflicting stories of what happened there.

One web page I ran across stated that there was an outbreak of a

certain type of amoeba in the Placerville water supply, another says

it was EMF, others EBV, Mercury, etc., you know the drill. I wish I

still had the link to the water supply story but my computer has

crashed more than once...sorry. You might be able to find something

about it if you look.

>

> Even tho' mold exacerbates your sensitivities there must be

something that caused the sensitivity, correct? I'm just trying to

learn at this point.

> Lee

I've heard it all.

People feel incredibly free to simply promote any concept they dream

up whether it " fits the facts " or not.

You can point out the exclusionary evidence that makes their concept

fail to imprint itself upon the circumstances, and they say

something to the effect that " Your experience doesn't count - even

if you WERE there " .

It's kind of like having people say " Starvation causes CFS " , and

when you point out that we were all well fed and that CFS doesn't

consistently happen in people who have no food, they say " Well then

you obviously don't have CFS, because CFS is the result of

starvation. You must have something else that micmics

TrueStarvationCFS. "

Yes, no matter how many times I say that mold has been around

forever and is not known to cause CFS, people still hear me say that

specific myctoxins seem to be a common denominator in exacerbation

and come away repeating to others " says mold is the cause of

CFS " .

There's just no stopping people once they get going, even though

they cannot point to a single place where you made the statements

they attribute to you.

Something would necessarily have to change in a big way for mold to

cause CFS, and since plenty of people who are exposed to mold DON " T

develope CFS, there is no reason to speculate that " Mold is the

cause of CFS " , it only does what it does and acts like an

interesting factor that is being consistently ignored despite the

incredible impact that a " sensitized person " can observe.

What I said to Dr is that there is a " specificity " to

certain molds that is worthy of note - and that we were going to see

a lot more mold illness in the future.

The very fact that so many hundreds of doctors, researchers and all

the people I presented this to scoffed at this " ridiculous notion "

means that the current epidemic of " Mold Hysteria " must be taking

them all by surprise - just like " CFS " did, and refuses to disappear

no matter how much they try to ignore it.

Something would have to change in order to cause so many people to

claim that mold is killing them NOW!! Something is surely changing!

It would be nice of doctors would help us find out why this is

really happening rather than try to make the phenomoenon go away by

pretending that all their patients are crazy and they can't see it

occurring all around them.

-

[Guest guest]

Glad you are taking the CSM.

On the one hand there's Shomaker's story about the company that moved from a

sick building, and everyone was still sick. So they have to take every single

sheet of paper in the file cabinets, put them in plastic, take it to another

room and photocopy it. I don't remember the sequence, but it was insane and

that was depressing.

On the other hand, I moved everything from my old house to my new one and I am

fine. There is general mold in the Bay Area where I moved from, and I never say

any inside my house. But it seems like most of the mold exposure I was getting

was from clay, as pottery was my hobby. I got sick right when I started doing

it. And when I moved I didn't have my studio unpacked for 6 months and was

well. Then I threw some pots one day and was sick. But more recently we had a

flood at work and even though we did mold remediation right away, it still was

making me sick until they pulled out all the carpets and drywall. Now I do fine

there.

Doris

[Guest guest]

" Doris Brown " wrote:

> On the one hand there's Shomaker's story about the company that

moved from a sick building, and everyone was still sick. So they

have to take every single sheet of paper in the file cabinets, put

them in plastic, take it to another room and photocopy it. I don't

remember the sequence, but it was insane and that was depressing.

>

And when I moved I didn't have my studio unpacked for 6 months

and was well. Then I threw some pots one day and was sick. But

more recently we had a flood at work and even though we did mold

remediation right away, it still was making me sick until they

pulled out all the carpets and drywall. Now I do fine there.

>

> Doris

You are describing what I call " The Power Curve of Exposure " .

Depending on ones ability to detox - and probably far too many

contributing variables to enumerate - we are all somewhat different

in our ability to withstand exposure, and this variability varies

even in the individual over time.

In '98, Kathy Masera of the California Job Journal and her entire

staff went through this experience. All their papars were

photocopied, furniture and office equipment abandoned or fiercely

remediated. The remediator told them not to bring so much as a pen

or a paper cup from their moldy offices. But even after such

stringent protocols, almost all of them relapsed in their new place

and they had to do it all over again.

When I contacted them, they were completely flummoxed by their

inability to return to a normal life post " Hitting The Wall " and I

offered to share my experience with them if they would help me

obtain research, but their failure to get back to me indicates that

they are happy where they are.

Same as when Melinda Ballard's family made the cover of USA TODAY

in 1999 with their " Toxic Tara " . I contacted Melinda and explained

that I had some experience with this phenomeon that might be of

value, but she referred me to Albert Donnay, who wasn't interested

in pursuing research into this strangeness with me.

Seems strange to me that they would throw away an opportunity to

work with someone who pursued this with enough effect to walk of the

ampligen program and return to mountain climbing, but this has been

the almost universal response of CFSers and CFS researchers as well.

We all have our choices to make.

-