Re: They're not laughing anymore

[Guest guest]

>

> But I had noticed that I didn't have a consistent response to all

> Eucalyptus, which raised an inconsistency.

> I simply got a sample of the offending mold, Stachybotrys, tested myself -

> and recognized the familiar " hits "

The woman next door, who lives under the huge eucalypyus grove has had

fibromalgia since she's lived there.

More questions: Did you scrape the mold off the base of the trees and just

sniff it? I googled and read that there was a new type of stachybotrys mold

discovered in eucalyptus leaf litter. I'm trying to find the publication. It

was published in 1986. Since those trees have been here for over a hundred

years, I guess it's no surprise that I'd get " hits " off off certain wet

lawns around here too. There's one in particualr where I need to walk across

the street -- can't even breathe..

Here's the publication:

Dorai, M. and B. P. R. Vittal (1986). A new Stachybotrys from Eucalyptus

litter. Transactions Of The British Mycological Society 87(4): 642-644.

It looks like there might be a couple different types of stachymold

involved... as if one mutated (?)

>

> A " Universal Reactor " is an victim of chemical sensititivies who is

> assaulted by so many susceptibilities that continued survival outside of a

> bubble is almost impossible. I was amazed when mold avoidance alone abated

> my other reactivities.

Now see, my CFIDs started when I had to go back to working in the small

windowless computer graphics room upstairs at KRON-TV-- you know, Van Ness

and Geary in San Francisco. Downtown so not too many trees around there but

now that I think of it there may have been some euc's.. I also had just

gotten married and so moved into a brand new townhouse on Russian Hill. So

all new carpets and resinous cabinetry off-gassing....Hard to say which was

to plan or maybe both, the universal reactor-type theory. Anyway I went from

very healthy to very sick within months of being married... I know... I

know.... I wonder too :-)

> Some reject this type of approach with disdain " That's not a cure " . No, it

> is not. But instead of lying flat on my back praying for death, I've spent

> years out having adventures and wondering why people would make the choice

> to remain completely out of control of their illness when they complain so

> much that they " would do anything " .

I'm a very active person whose been sick, on and off for 18 years. I will

move anywhere and do anything to feel good again but since I've been

clobbered for so much longer with this problem I wonder if it would clear up

as quickly as it did for you...

I also have the messed up guts due to celiac and also still have fish

biotoxins floating around in my tissues due to the recent fish poisoning (

BTW, I just read the gene chart and noticed that I also have the HLA DQ8

fish toxin gene too... :-/

How long did it take for you to find some solid good health -- you know,

between the time you realized what the problem was and moved, to when you

felt good again?

I don''t travel much because I'm so tired and it's so hard to get no

grains/no dairy and my lowered resistence makes me susceptible to hotel room

fumes and everything else you guys are talking about.. the universal reactor

stuff...

If I thought I had a shot at getting past the super sensitivity, I'd move

out for a trail.. Do you think a month in Lake Tahoe or Central Oregon would

work? Two months? I'd keep doing the cholystyramine for toxins.. I guess I'd

see if I just started to feel better.

Sorry for all these questions and I'm not very organized. This is just a

whole new angle to look at and I have just too many weird coincidences...

Thanks to and everyone here!

~Robin

[Guest guest]

>

> Thanks. I don't want people to confuse me with those damned Swedes!

> That would be simply Ludefisk!

hee hee.

The Eucalyptus grove where I first said " Hey. What the heck is different

> about THIS grove? " was at the end of Lincoln Ave in San , not too far

> from the " Lloyd WRONG " Civic Center.

hmmm.. That's about 15 miles from me as you know.. ~robin

[Guest guest]

robin ann wrote:

> How long did it take for you to find some solid good health -- you

know, between the time you realized what the problem was and moved,

to when you felt good again?

> If I thought I had a shot at getting past the super sensitivity,

I'd move out for a trail.. Do you think a month in Lake Tahoe or

Central Oregon would work?

> ~Robin

Moving never did all that much for me. I had moved many times and

even though it made a slight difference - just enough to let me

know " the effect " existed differentially in various places.

As I told Dr Cheney at the begining of the Incline epidemic " I have

an inexorably increasing reactivity to mold that grows progressively

worse no matter where I live or how well I take care of myself " .

I employed various degrees of avoidance with various degrees of

success starting two years after the epidemic. It was compelling,

and very important to me, but not really definitive enough to get

any doctor to listen to me.

But then I moved into a place of much higher mold exposure in '94

and completely relapsed to a point comparable to illness onset -

winding up in the ampligen program.

But there was one small catch. There was no way I could afford

ampligen. I didn't qualify for the funded Hemispherx study because I

had already initiated a mycotoxin avoidance protocol and was

regaining my ability to walk and was turned down by Hemispherx

because I was " still ambulatory " .

As Dr said, I really was at a point where all I wanted to

was give up and have this whole thing be over.

But I had one last thing to try, and that was to concentrated on

exploiting the differential of this " effect " that I had been blaming

on mold. I wanted to construct an avoidance protocol that would

bring my exposure down as much or lower than the degree that enabled

a certain level of recovery during the summer and see if I could

maximize the benefit of decreased exposure.

This is the specific strategy that all doctors refused to help me

with and flat out told me it wouldn't work.

But with no other options, I did it anyway.

Within six months, I went from a level of illness that qualified me

to be in the ampligen program and called " severe " by Dr -

to mountain climbing again.

I had acompanied many other CFSers into moldy places and seen the

effect it had on them. I wasn't alone by any means.

But it was my hypersensitivity that allowed me to identify

the " trigger " . Others didn't share this and even though they could

vaguely feel something was wrong, they couldn't pin it down.

Finding this same type of reactivity in others and identifying

Stachy at the source of so many CFS clusters seemed enough of a

commonality that I believed there would no longer be any difficulty

in pursuading a doctor or researcher to investigate " the mycotoxin

connection " .

I couldn't have been more wrong. CFSers reeking with mold which

they cannot identify and CFS doctors and researchers literally

worked harder to dismiss this " clue " than denialist doctors work to

prove that CFS does not exist.

Considering that this " effect " has meant a great deal to me, I find

it incredible that people would make such efforts to turn away from

a very promising lead. I feel that studying the dismissal

manifested by illness sufferers may hold the reason why denialists

work so hard to maintain their conviction that CFS cannot be real.

My experience is often misconstrued as claiming that " mold is the

cause of CFS " . All I have said is that this appears to be a common

denominator of response in CFS that should be investigated.

As I described in Mold Warriors, this response is similar to peanut

allergies in that the amounts involved are so slight, that cross

contamination of possessions and objects by mycotoxins is more than

enough to keep the immune system upregulated.

Moving locations is not sufficient unless you are incredible lucky.

Some people have indeed experienced such luck, but then their luck

ran out at some point. I have my own curiousity about the

circumstances under which these relapses occur.

Annettes story about unpacking possessions from a moldy flat and

experiencing a degree of exacerbation is a concept I am quite

familiar with and have heard from many people.

I can't wait to find out what " causes " CFS and a cure is found.

Until then, I practice extreme mycotoxin avoidance.

-

[Guest guest]

I have the mold gene and long arm span. But I checked a couple healthy people

and they did too.

Anyway, I really don't think anyone should use smell or sight to determine if

they are around mold toxins. I never saw any mold ever where I was living, it

was never musty, it was a dry climate, etc. I can throw some pots with clay

that has absolutely no visible mold or smell and it still makes me sick.

Shoemaker doesn't have a lot of faith in remediation. As he says, millions of

spores with lots of toxins had a chance to get all over your house before you

replaced the moldy stuff, and that's assuming you actually got all the moldy

stuff which you normally don't because so much is hidden. However open windows

and moving air is supposed to be a good thing to keep mold from growing, but the

breezes also cause the spores and toxins to be more blown around..

I don't think a mold can die from heat, I think they love heat. As long as

there is moisture. And remember it's not really the mold that is a problem, it

is the toxins. And those are chemicals that are there forever. Shoemaker's

experience is that if you have a mold gene, you can never live in a house that

once had mold, even once it has been cleaned up. And remember, he believes

is an anomaly in being able to stay well by " mold avoidance. "

Of course before I went to the trouble to move, I would try CSM and see if it

makes you better.

I'm wrestling with a simialr puzzle. I recently learned all about snow mold.

On the one hand, I've lived in Reno for a year now and we've had snow about half

the time (and the snow lives even when there is no snow). And I've been well

except a few days. So I wonder if the days I am not well have something to do

with the snow mold, but then I've been so well most of the days. Outdoor molds

don't typically put off mold toxins to the degree indoor molds do. But it sure

would be nice if there were some meter that could read the mold toxin levels.

Doris

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

From: robin ann

See, mold avoidance doesn't seem to be the simple answer for me.. at least

not yet. Or maybe I have mold in my house. My house used to be a flat roof

structure but that roof failed, flooded and soaked all the insulation in the

drywall. I thought we replaced most of it but maybe there's a problem

there..

The crawl space under the house is wet year round; We're at the base of a

hill :-/

I'm going to have someone look at it. You don't happen to know of a good

mold inspection/remediation company around here -- Northern California?

I know my house sounds like a recipe for mold, but the house gets so much

fresh air and I sleep with the windows open. I also have Austin air cleaners

in many of the rooms, including the bedroom of course. In the summer, it

gets so incredibly hot under the roof I think that would kill ~any~ mold

that might be growing in the old flat roof that's still under the new

pitched roof...

I also don't smell any mold in my house. However........ if I even get a

tiny whiff of ANY kind of mold outside or, well, anywhere, it really knocks

me for a loop. I mean it's like a direct hit to the brain, bam!, so I know

that something's going on there...

I was surprised to read about the case of

the other woman, , who happened to be so naturally flexible and whose

" wingspan " is wider than she was tall.

[Guest guest]

Hi , I thought that part of your mold avoidance was living or at least

spending a LOT of time at high altitudes? BTW I read that anything over 5280

feet is " high altitude " . I thought that higher altitudes increased a

person's VEGF or erythropoietin -- in fact that is what kept the five

American Olympic skiers from competing at the games in the beginning -- they

had too high VEGF -- producing too many red blood cells hence giving more

stamina...

And if you're saying that you didn't move, what would you do if you lived

right next door to a moldy Eucalyptus grove like I do? I sleep with open

windows on the side of the house with the Eucalyptus tress towering over. I

slept with the windows closed tight last night and an air cleaner going and

woke up far more refreshed.

I thought of a reason your mold problems all came back hard in 1994 -- that

was the year of El Nino -- huge rains and flooding after 7 years of drought.

The drought was probably helpful to your condition... For me, I think that's

what made me able to tolerate the mold gradually; we moved here during the

drought and got used to the mold little by little. Last year was not only a

particularly rainy year but it was a cool wet summer by Bay Area standards

and maybe that's why I'm feeling so bad. The fish poisoning in September is

probably part of it too...

So I was toying with the idea of finding a, mold-free place and spending a

few weeks up at Homewood, Lake Tahoe area to see if maybe the elevation and

avoidance of my neighbors' huge eucalyptus trees made any difference.. You

think I'd have the same problems at Lake Tahoe?

The other problem with my breathing that eucalyptus stuff in the air

and soil for 10+ years is that I've grown used to it and can't oinpoint

it... I can't tell if it's bad or good -- it's so pervasive.

I guess I'm wondering how you can avoid mold living in the SF Bay Area...

Where do you live now?

Oh, also, where do I scrape on the tree to get the best mold sample? Thanks.

And when you say you avoid mold, that must mean that you get some occasional

exposure because you have to get a reaction to it in order to know it's

there, right?

Do you still take cholystyramine? I'm sorry if you already mentioned that...

Also, is it possible to take erythropoietin as a supplement?

Thanks!

~Robin

[Guest guest]

>

> I have the mold gene and long arm span. But I checked a couple healthy

> people and they did too.

Good!!! :-)

Anyway, I really don't think anyone should use smell or sight to determine

> if they are around mold toxins. I never saw any mold ever where I was

> living, it was never musty, it was a dry climate, etc. I can throw some

> pots with clay that has absolutely no visible mold or smell and it still

> makes me sick.

That's what I'm afraid of. I notice it only AFTER it's done the damage.

Of course before I went to the trouble to move, I would try CSM and see if

> it makes you better.

I'm trying it and it's helping a little. I can't completely tell because I

also have a candida problem (and thrush) from general dysbiosis -- the

Scombroid Fish Poisoning in September really thrashed my guts, my whole

system. I think that's what set the whole mold thing back into motion. As if

it's all cumulative...

I'm wrestling with a simialr puzzle. I recently learned all about snow

> mold. On the one hand, I've lived in Reno for a year now and we've had snow

> about half the time (and the snow lives even when there is no snow). And

> I've been well except a few days. So I wonder if the days I am not well have

> something to do with the snow mold, but then I've been so well most of the

> days. Outdoor molds don't typically put off mold toxins to the degree

> indoor molds do. But it sure would be nice if there were some meter that

> could read the mold toxin levels.

Oh dear! Snow mold? Maybe it is time for the bubble... :-)

That reminds me, I bought an N95 mask thinking that might help when I'm in a

particularly moldy time like right now when it's been raining so much and I

want to walk my dog and now the wind is blowing eucalyptus flowers and

leaves all over. My deck looks like it's covered with snow but it's actually

Eucalyptus flowers..

Sheesh...

~Robin

[Guest guest]

I just realized what you meant about moving, . The more I got to

thinking about moving up to Tahoe the more I remembered that, duh!, the

indoor mold up there has got to be screamin'... Those houses are clamped

shut all winter and get humid...

Maybe the desert... or maybe just another place in Sonoma County that

doesn't have quite the mold and eucalyptus exposure as this house that was

flooded in 1994...

So as you said, getting up there in really pristine conditions is the way

that helped you get reset, rebooted :-)

Altitude + lack of indoor/outdoor molds..

Unfortunately I also need a big kitchen in which to cook gluten and dairy

free meals.. a lot of fresh vegeatbles on hand etc.. just thinking out loud

now..

Also, I've not been involved in CFS support groups and so on but my sense,

personally, is that this is, in my case, an environmental exposure problem..

The unusual toxicity problems, reactions and sensitivities all just smack pf

exposure to me. But maybe my symptoms and sense of the thing are different.

~Robin

[Guest guest]

On Feb 14, 2006, at 9:28 PM, robin ann wrote:

> I just realized what you meant about moving, . The more I got to

> thinking about moving up to Tahoe the more I remembered that, duh!,

> the

> indoor mold up there has got to be screamin'... Those houses are

> clamped

> shut all winter and get humid...

>

> Maybe the desert... or maybe just another place in Sonoma County that

> doesn't have quite the mold and eucalyptus exposure as this house

> that was

> flooded in 1994...

Go south or east of Tahoe, down into Reno, Carson City, Minden, or

even as far south as my own hometown, Bishop. It's all very arid

there -- bitter cold dry winters, hot dry summers, and lovely climate

for terrific gardens if you've got the water.

Overall good quality of life; one-day access to doctors in LA and

Reno (if you're willing to drive a few hours), and the property

values aren't too bad, either. And, God, it's some of the prettiest

country anywhere.

Sara

[Guest guest]

I *love* that area.. I used to drive out 88 over down the King's Grade (I

think it was called) into Minden and Gardnerville... Great hot springs at

Genoa..

So you guys have good natural food type stores out here? :-) Anyone here

familiar with the Weston Price group... y'know the WAPF and all that?

~Robin

[Guest guest]

On Feb 14, 2006, at 9:56 PM, robin ann wrote:

> I *love* that area.. I used to drive out 88 over down the King's

> Grade (I

> think it was called) into Minden and Gardnerville... Great hot

> springs at

> Genoa..

That would be Kingsbury Grade.

>

> So you guys have good natural food type stores out here? :-) Anyone

> here

> familiar with the Weston Price group... y'know the WAPF and all that?

There's a Wild Oats in Reno, on the south edge of town past the

Atlantis on Virginia. Might be a Whole Foods there by now, too;

would know.

You can find decent organics at the Safeway in Mammoth; and I imagine

if Bishop doesn't have a good source, it will soon. In the summer,

it's easy enough to come by homegrown: it's the kind of low-key rural

region where you have to be careful if you leave your car unlocked

downtown, because people will leave unwanted tomatoes and zucchini in

your back seat while you're not looking.

The Genoa springs are nice, as are the ones (Grover) up on Monitor

Pass out of Markleeville. Down around Mammoth and on into Bishop,

there are lots of little undeveloped springs, along with two

developed ones with full-sized pools -- Whitmore (near Mammoth

Airport), and Keough (south of Bishop -- I learned to swim there).

It's a little retro, but you can find plenty of interesting people --

plus amazing air, almost no mold, more stars than you've ever seen,

and the best water in the world. (Crystal Geyser's main bottling

plant is up that way.) All in all, a pretty healthy place -- as long

as dust doesn't bother you, and you stay clear of the ticks.

Geez. Just talking about it is making me homesick.

Sara

[Guest guest]

Well, if I move out there (which I just may!) you can come and visit me :-)

I used to go to that valley with my sisters and a friend when we wanted to

escape the interminable hipness of San Francisco.

I mean, I moved from a trendy art studio South of Market to Petaluma ten

years ago -- no stops even in Marin -- too suburban... Had to get that

pick-up truck exurban thing going..

~Robin

On 2/14/06, Mercuria <mercuria@...> wrote:

>

>

> On Feb 14, 2006, at 9:56 PM, robin ann wrote:

>

> > I *love* that area.. I used to drive out 88 over down the King's

> > Grade (I

> > think it was called) into Minden and Gardnerville... Great hot

> > springs at

> > Genoa..

>

> That would be Kingsbury Grade.

> >

> > So you guys have good natural food type stores out here? :-) Anyone

> > here

> > familiar with the Weston Price group... y'know the WAPF and all that?

>

> There's a Wild Oats in Reno, on the south edge of town past the

> Atlantis on Virginia. Might be a Whole Foods there by now, too;

> would know.

>

> You can find decent organics at the Safeway in Mammoth; and I imagine

> if Bishop doesn't have a good source, it will soon. In the summer,

> it's easy enough to come by homegrown: it's the kind of low-key rural

> region where you have to be careful if you leave your car unlocked

> downtown, because people will leave unwanted tomatoes and zucchini in

> your back seat while you're not looking.

>

> The Genoa springs are nice, as are the ones (Grover) up on Monitor

> Pass out of Markleeville. Down around Mammoth and on into Bishop,

> there are lots of little undeveloped springs, along with two

> developed ones with full-sized pools -- Whitmore (near Mammoth

> Airport), and Keough (south of Bishop -- I learned to swim there).

>

> It's a little retro, but you can find plenty of interesting people --

> plus amazing air, almost no mold, more stars than you've ever seen,

> and the best water in the world. (Crystal Geyser's main bottling

> plant is up that way.) All in all, a pretty healthy place -- as long

> as dust doesn't bother you, and you stay clear of the ticks.

>

> Geez. Just talking about it is making me homesick.

>

> Sara

>

>

>

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

>

>

>

[Guest guest]

" Doris Brown " wrote

And remember it's not really the mold that is a problem, it is the

toxins. And those are chemicals that are there forever.

Shoemaker's experience is that if you have a mold gene, you can

never live in a house that once had mold, even once it has been

cleaned up. And remember, he believes is an anomaly in being

able to stay well by " mold avoidance. "

> Doris

That is why I call it " Mycotoxin Avoidance " and not " Mold Avoidance " .

Dr Shoemaker pestered me for years to have the HLA tests done.

I told him that my experience indicated that I possess the extreme

susceptibility and that my words have inherent value.

My personal experience, while suggestive as an example of what might

be a factor in other CFSers symptoms - should not be the deciding

factor in whether to apply protocols of avoidance.

Just as people are being forced to make the self determination if

they have CFS over the obstinence and disbelief of doctors, one

should also be able to look at my story as being a prototype for

CFS, hear my description of the mycotoxin connection, and make the

decision whether to see if this is a factor in their case as well.

After all the years of fighting with doctors, I trust my

perceptions over any tests. No matter what my HLA is, if I test

myself against molds and have this response, I must act in

accordance with that level of reactivity, and I believed that others

would look at this the same way.

Dr Shoemaker has never seen anyone with the dreaded double mold

gene recover to the extent that I described, and so he wrote in Mold

Warriors that I probably had the genetic makeup that allows recovery

through avoidance. But people inexplicably used that element of

uncertainty as an excuse to avoid looking at my approach to " Just

test yourself and find out " So Dr Shoemaker insisted that I have my

HLA done.

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

increased risk of CFS.

Dr Shoemaker has confirmed that I am an anomaly in managing to take

control over my illness by mold avoidance. It is as I have always

said, that conventional views of mycotoxin exposure do not apply to

someone at my level of reactivity and I was forced to adopt a

lifestyle of " Extreme Avoidance " . The simple fact is that this is

an anomaly because no one had tried it before.

We are now finding that others who are " Extreme Responders " are

also able to take advantage of " Extreme Avoidance " once they are

taught how.

-

[Guest guest]

robin ann wrote:

I mean, I moved from a trendy art studio South of Market to Petaluma

ten years ago -- no stops even in Marin -- too suburban...

~Robin

I taught Hang Gliding for years out at Dillon Beach.

On crappy days when we'd get 'rained out', we would retreat to a bar

in Petaluma for a hot brandy before heading back south.

The place was a slammer and I soon learned to stay away.

Nobody understood why I just refused to go in and be sociable.

Why I took a sudden dislike to the place.

This is the lifestyle I've been forced to practice.

Moment to moment, paying attention and never ignoring those particular

places that have taught me through years of experience that the long

term effects of these " So what? " exposures have effects on me that go

far beyond what anyone believes can be possible.

-

[Guest guest]

- how is one taught 'extreme avoidance' of mold toxins, esp if one reacts to

EVERYTHING? (their reaction could be due to something else, and not a mold

mycotoxin, if that person reacts to many things, like pollen, dust, etc). And

mold, and their toxins, are EVERYWHERE (at least, they are where I live) - so

extreme avoidance is like living in a bubble, and even that is no guarantee.

How does a person identify the specific mold strains (and their toxins), if they

are a universal reactor? (and the mold itself might not be visible for the

person to see, even if the person could narrow down the reaction to a specific

mold). That person could be reacting to any number of things, right?

Forgive me if the answer to this has been in previous posts; if it has, it has

not 'sunk into' my head yet-Les

Re: They're not laughing anymore

" Doris Brown " wrote

And remember it's not really the mold that is a problem, it is the

toxins. And those are chemicals that are there forever.

Shoemaker's experience is that if you have a mold gene, you can

never live in a house that once had mold, even once it has been

cleaned up. And remember, he believes is an anomaly in being

able to stay well by " mold avoidance. "

> Doris

That is why I call it " Mycotoxin Avoidance " and not " Mold Avoidance " .

Dr Shoemaker pestered me for years to have the HLA tests done.

I told him that my experience indicated that I possess the extreme

susceptibility and that my words have inherent value.

My personal experience, while suggestive as an example of what might

be a factor in other CFSers symptoms - should not be the deciding

factor in whether to apply protocols of avoidance.

Just as people are being forced to make the self determination if

they have CFS over the obstinence and disbelief of doctors, one

should also be able to look at my story as being a prototype for

CFS, hear my description of the mycotoxin connection, and make the

decision whether to see if this is a factor in their case as well.

After all the years of fighting with doctors, I trust my

perceptions over any tests. No matter what my HLA is, if I test

myself against molds and have this response, I must act in

accordance with that level of reactivity, and I believed that others

would look at this the same way.

Dr Shoemaker has never seen anyone with the dreaded double mold

gene recover to the extent that I described, and so he wrote in Mold

Warriors that I probably had the genetic makeup that allows recovery

through avoidance. But people inexplicably used that element of

uncertainty as an excuse to avoid looking at my approach to " Just

test yourself and find out " So Dr Shoemaker insisted that I have my

HLA done.

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

increased risk of CFS.

Dr Shoemaker has confirmed that I am an anomaly in managing to take

control over my illness by mold avoidance. It is as I have always

said, that conventional views of mycotoxin exposure do not apply to

someone at my level of reactivity and I was forced to adopt a

lifestyle of " Extreme Avoidance " . The simple fact is that this is

an anomaly because no one had tried it before.

We are now finding that others who are " Extreme Responders " are

also able to take advantage of " Extreme Avoidance " once they are

taught how.

-

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

" Masland " wrote:

>

> - how is one taught 'extreme avoidance' of mold toxins, esp if

one reacts to EVERYTHING? (their reaction could be due to something

else, and not a mold mycotoxin, if that person reacts to many

things, like pollen, dust, etc). And mold, and their toxins, are

EVERYWHERE (at least, they are where I live) - so extreme avoidance

is like living in a bubble, and even that is no guarantee.

> How does a person identify the specific mold strains (and their

toxins), if they are a universal reactor? (and the mold itself might

not be visible for the person to see, even if the person could

narrow down the reaction to a specific mold). That person could be

reacting to any number of things, right?

> Forgive me if the answer to this has been in previous posts; if it

has, it has not 'sunk into' my head yet-Les

That's a great question.

I wish I had a great answer.

" Years of experience and a wild leap at following up on an

observation " led me to an approach that is based upon my Hang

Gliding experience.

I detect mycotoxins in the same way a Hang Glider pilot detects

thermals - by indirect indicators and associative responses.

People would insist that a particular corner of a building would

feel bad because of chemical exposure - " pesticides perhaps " .

Maybe. But why would the pesticide be concentrated in ONE corner -

IN the house - and in a house of identical materials and

construction to others that don't have this effect?

And why would the " pesticides " just happen to coincide with that

strange discoloring that denotes past water damage? ...and seemingly

not be present elsewhere?

As Dr Shoemaker says in Mold Warriors, the concept was reinforced

by years of experiences - all piling up and being constantly

reconfirmed.

When I was " Universal " , as Dr said, " life has pretty much

become unbearable for you " . But this one mold reactivity stood out

as a " specificity " and I just concentrated on it - and much to my

amazement, the other sensitivities just faded away.

Yes it is like living in a bubble. I would like nothing better

than to have my old life back. Maybe someone will discover a Magic

Bullet someday. Until then, this is the best bubble I could come up

with - and it could be a heck of a lot worse.

I know - because it was!

-

[Guest guest]

Thanks . FYI, as a result of this new information about mold I'm taking

a month and going to live at a house in Taos, New Mexico. My friends there

insist that the house is very safe for mold and it's at 6200 feet. There

are very few mold problems in that region anyway, especially since

they're going through a drought there.

My doctor said it would be the only way I could know for sure if it was the

giant eucalyptus trees we're living under and/or our previously flooded

house that was causing the problems for me. What do you think?

~Robin

[Guest guest]

" robin ann " wrote:

>

> Thanks . FYI, as a result of this new information about mold

I'm taking a month and going to live at a house in Taos, New Mexico.

My friends there insist that the house is very safe for mold and

it's at 6200 feet. There are very few mold problems in that region

anyway, especially since they're going through a drought there.

>

> My doctor said it would be the only way I could know for sure if

it was the giant eucalyptus trees we're living under and/or our

previously flooded house that was causing the problems for me. What

do you think?

> ~Robin

Robin, consider carefully what Annette and I related about our

illness exacerbation after NOTHING MORE than exposure to items

brought out of an enviromnent which was contaminated with specific

mycotoxins.

I know people who tried just moving and didn't feel much different,

but they took their pillows and clothing with them.

This is the situation I described to Dr Cheney: " An inexorably

increasing reactivity to mold that grows worse NO MATTER WHERE I

LIVE or how well I take care of myself " .

This reactivity is nothing like an allergy, and is so difficult to

describe that I literally have to haul people in and out of

exposures asking " Do you feel it NOW? " over and over.

It really saves a lot of time- as in " Years of trying! "

If you left behind any potentially contaminated possession, went to

a place FREE of such contamination - and then, once having " got

clear " of the response- upon returning to your eucalyptus

grove/flooded house - you would be able to tell precisely where the

exposure was coming from.

" Get clear " then go the Truckee High School, where the " CFS cluster "

that started the entire CFS phenomenon occurred - and then you will

understand!

-

[Guest guest]

Okay. So maybe I fly out there and just take my laptop, some artist

materials and a few clothes that I can wash as soon as I arrive? My little

studio is fully furnished and has a nice kitchen. There's a Whole Foods

store in Santa Fe so I can stick to my great Paleo diet -- very plain. It

works so won't change a thing.

I'm usually quite athletic and like to be outside so I plan to be walking

quite a bit and practicing yoga..

This isn't as crazy and risky for me as you might think; when I started to

look back and consider the times I've been well-er than others: the " well "

times have been during the 7 year drought before my house flooded. Also I

felt good whenever I went away from this area.

For example, I went on a week-long yoga retreat last year, lived outdoors

next to the ocean, and never felt better. I attributed it to 4 hours of yoga

a day but now I am thinking it was the escape from my house. (!) After a

week of handstands, within days of being back home I was sick and could

barely walk the dog around the block.

I've always looked at food as being the culprit due to my celiac diagnosis

but I now have the simplest healthiest diet on the planet. No food products,

all my stuff is made from scratch. I know my basic IgG food sensitivities

and will receive the results of the York Labs test so I can see if I'm

leaving anything out.

I know I'm not sick with some " disease " and I know my organs and body are

working great. It's time for me to consider environmental exposure. I have

no children and am not consistently well enough to hold down a job -- what

do I have to lose?

My husband isn't thrilled about this and, frankly, I was devastated and

crying buckets when it first occurred to me that this precious house I've

been building up for so long might be to blame for my illness. But without

health I am nothing. So I've decided to act. It's the only way I'll know for

sure that something here might be to blame.. Or I can rule that out and look

elsewhere.

It makes sense that it is environmental because my body is in great shape

and I always look super healthy on tests. This " illness " has always struck

me as being an infection or outside cause but how can the doctors " see "

that?

When I entertained the idea that what I was feeling daily might be due to a

continual slow poisoning, well, it makes a lot of sense. And it makes sense

that the whole thing would be heightened when I added the accidental

ingestion of fish toxin in September. That nearly killed me, it was a 911

call, but it also may be what ultimately saves me as I became so sick that I

absolutely HAD to do something and so I went back into the detective role

and found this doctor who uses Shoemaker's theories and then I stumbled on

mold and then the eucalyptus angle... Even the CSM is working for me... yay.

~Robin

[Guest guest]

And y'know, even if it doesn't work, it'll be a nice vacation. :-)

~Robin

[Guest guest]

> So Dr Shoemaker insisted that I have my

> HLA done. HLA DR by PCR 4-3-53 and 7-2-53. Mold susceptible and highly

> increased risk of CFS.

Hi . 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

[Guest guest]

Here's a recent article June 2005 on Cryptococcus gattii and

Eucalyptus trees: I wonder if this mold is related to the CFS

problem...

" Cryptococcus gattii: An alert has been issued on the spreading of

Cryptococcus gattii from the Vancouver Island to Mainland British

Columbia (CBC News, Friday, June 03). What is this Cryptococcus

gattii? It is a yeast-like fungus belonging to a group of fungi called

Basidiomycetes (where mushrooms also belong!). This fungus was thought

to have a restricted geographic distribution in the tropics and

subtropics. It is has been reported in Australia, Papua New Guinea,

parts of Africa, the Mediterranean region, India, south-east Asia,

Mexico, Brazil, Paraguay and Southern California. The BC report was

the first outside the tropics and subtropics.

Cryptococcus gattii has an unusual association with trees. In

Australia it is associated with some Eucalyptus trees. In British

Columbia, however, Cryptococcus gattii has been recovered from

multiple species of native trees, but not from any of the introduced

Eucalyptus species. It has been isolated from soil, barks of trees and

from the air.

Unlike indoor moulds and yeasts, Cryptococcus gattii is a true

pathogen and therefore can infect even healthy people. It has a

preference for respiratory and nervous systems of humans and animals.

Exposure to humans is mainly through inhalation of airborne spores

into the lungs. "

~robin

[Guest guest]

I know, but its not that hard to eliminate gluten and enjoy life, if

you have one of those genes. You can drink wine, and many other

liquors, etc.

By the way, which labs run the HLA tests?

> >

> > , 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 " .

> -

>

[Guest guest]

> I know, but its not that hard to eliminate gluten and enjoy life,

> if you have one of those genes. You can drink wine, and many other

> liquors, etc.

>

> By the way, which labs run the HLA tests?

I agree! Gluten-free isn't that hard once you get the hang of it.

And, well, you feel so much better it's just unthinkable to go back

for me..

If anyone wants to know more about it, we have a wonderful

list over at GFCFNN, which stand for Gluten-free Casein-free Native

Nutrition.. My " home " group :-)

As for labs, the lab we all agree on over there is www.enterolabs.com

You'll want to get the Gluten Sensitivity Stool and Gene Panel

Complete which is $176..

What a lot of people do, though, is just stop eating gluten and see

if you feel better. That's usually a pretty decent sign. And even if

you're not totally " celiac " , stopping grains while suffering any

sort of autoimmune illness is a pretty good idea. The gliadin

protein in gluten (cereal grains) can be pretty hard to digest. I

don't know if you've ever noticed it but livestock, even goats, will

not eat wheat growing in the fields..

~robin

Ps, By the way I hope you noticed I changed this thread so it would

reflect the more specific outdoor Eucalyptus mold. Part of the time

I was following this thread I guess I wasn't sure which mold we were

talking about; At one point I thought we were talking about a stachy

mold.

[Guest guest]

Hi Jill-

I had my HLA run by Prometheus in San Diego www.prometheuslabs.com.

Medicare did pay for it because all the other tests including the scope biopsy

did not definately confirm Celiac Disease. Therefore we had enough medical

justification to run the HLA and have it covered.

Kathy

" jill1313 " <jenbooks13@

Thu Feb 23, 2006 1:42 pm ...>

I know, but its not that hard to eliminate gluten and enjoy life, if you have

one of those genes. You can drink wine, and many other liquors, etc.

By the way, which labs run the HLA tests

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

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[Guest guest]

Thanx. In March I will finally see an immunologist who is on my HMO

and I have heard is excellent and lyme friendly. I was supposed to see

him in October but he had a foot operation, I rescheduled to early

January but cancelled because of all the tooth and silicone stuff. I

have heard he does specialized immune testing but I would like to see

if I could get some of these covered by him. I doubt the SNP's can be

covered but probably a case can be made for HLA subtypes, considering

certain ones are more common in chronic lyme. And then, since an aunt

had celiac sprue, one could test for those genes, too, I hope, on

insurance. We'll see.

>

> Hi Jill-

>

> I had my HLA run by Prometheus in San Diego www.prometheuslabs.com.

>

> Medicare did pay for it because all the other tests including the

scope biopsy did not definately confirm Celiac Disease. Therefore we

had enough medical justification to run the HLA and have it covered.

>

> Kathy

>

>

> " jill1313 " <jenbooks13@

> Thu Feb 23, 2006 1:42 pm ...>

> I know, but its not that hard to eliminate gluten and enjoy life,

if you have one of those genes. You can drink wine, and many other

liquors, etc.

> By the way, which labs run the HLA tests

>

>

> ---------------------------------

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more on new and used cars.

>

>