Re: Re: What we have here.... is a failure to communicate!

[Guest guest]

Sue and ,

In fact when I first took sick a year ago last January, I said to friends I

was trying to explain how I lousey I felt, I said, " the only thing that

appears to be working well are my sinuses " !!! I was NOT sneezing or

stuffed up, just felt sick. Everything bothered me, my eyes, my throat,

fatigue (before exertion as said), muscles were weak (before exercise).

However when I am run down, you think of flu or cold or something with sinus

stuffiness or sneezing and that's why I thought of that, only thing that

feels okay are my sinuses, so not an allergy. EVEN SO, with the sore

throat, doctor proposed giving me Nasonex for post nasal drip! He said sore

throat freq caused by post nasal drip. I said I have no trouble with my

sinuses. It is soooooooooo hard to get across.

I tested allergic to almost everything, weeds, grass, trees, cats, dogs,

dust mites, but not mold. When I say that people have said allergy tests

are not good. No! I don't think I am allergic to mold. I only sneeze

during the change of seasons.

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

From: <ssr3351@...>

I agree that mold can make you sneeze, cough, but what I & many others

> suffer IS NOT ALLERGY BASED whatsoever!!!!! I suffered from allergies

> while in

> the school but haven't had any of those problems since leaving, but I

> would

> gladly put up with allergies over the other problems I have now!!!!!!

>

> Sue

[Guest guest]

Re: mycotoxins and different responses to mold

I would add that mold/fungal systemic infections are a worse problem than

sick building because if you have fungal infection circulating in your body

that you cannot overcome, your immune system is constantly killing fungus

and producing mycotoxins INSIDE your body 24/7. Then avoidance doesn't

help. You can be in most sterile environment and still be sick with

mycotoxin because you are making it. That's why to me live mold is more

dangerous than dead, a debate here. If you don't get infected, you can get

away from the mold and the mycotoxins. If you get infected, you've got a

much bigger problem to overcome. A clean environment would help but you'll

still be sick.

[Norton AntiSpam] Re: [] What we have here.... is a

failure to communicate!

Kathy -

I understand about being concerned for others in the environment that got

you sick. But to some degree, we probably have to realize that we are the

coalmine canaries. In my situation, I was the first to get sick - days

before anyone else. Of those still living (two of the former building

occupants are dead, and another is dying at last report), I am the only one

still not sufficiently recovered to be working. The majority suffered what

appear to be respiratory problems rather than CFS.

My understanding at this point is that the sensitization is a progressive

thing. I had been exposed years earlier, and had already been sick from it

for a couple of years. The first time, I got better with time and distance

(and meds that masked the symptoms). This time, I just couldn't do it. Of

course, that marks me as a probable malingerer in the employer's eyes,

right?

Based on various things I have read and personal stories I have heard, I

have an idea that some people will detox slowly on their own over a period

of time and become functional again. As my local doc put it - you have to

think about total toxin load as well as mycotoxins and individual

vulnerabilities and exposures. Shoemaker can test for the genetic

vulnerability - but that alone does not describe everything that happens. A

lesser exposure in a healthier person not carrying a major toxin load (or a

male - they don't get this stuff nearly as often) is simply not going to be

the same thing as what happens to a vulnerable person already sensitized and

already carrying an existing toxin load - which is highly likely, given the

vulnerability and lack of available treatment for the vast majority of us.

At some point, you hit the limit of what that particular body can withstand.

You hit it. I hit it. All hell breaks loose, and it's never precisely the

same in any two people, nor even in

a single person all day, every day. Other people seem to do ok with lesser

measures such as avoidance techniques alone. For those who can't detox well

enough to regain their health, all the avoidance in the world won't get it

done. The poisons remain, endlessly recirculating inside the body and doing

their damage. Until those are addressed, things won't get better.

I take from this the thought that, the minute you hear a blanket statement

about mold, mycotoxins, how to deal with them, or how they affect everyone

(or on any other subject, for that matter!) - that is the time to stop and

think about what you're hearing, because that's an agenda - not an

experience. Shoemaker and the guys like him didn't arrive at their present

learning by generalizing first and getting specific later. The did the

opposite - listened to individual experiences, and eventually assimilated

that into an understanding of the whole, which could in turn be used to

benefit the individual. Good analytical work always operates in both

directions. You work from the specifics to the broader picture and back to

the specifics again. Systems are like that - whether they are buildings or

bodies or patterns of illness. Caring for and about mold victims is the

same. There may be broader " rules " and issues, but they only work insofar as

they serve the specific victim. And when they

don't, you have to re-check the original premise - or at least the

speaker's agenda. [The obvious Ayn Rand references omitted for brevity only!

; ) ]

In any case, your own experience or mine is just as valid as anyone else's.

The problems in communication only arise when we skip over that part and

insist on trying to drive a cubical spike into a circular receptacle with a

jackhammer. It not only doesn't work, it tends to annoy to the neighbors and

destroy both the spike and the receptacle in the process.

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

__________________________________________________

[Guest guest]

Barb,

You just decribed my problem. I have fungal systemic infections all throughout

my body. My Immune system has totally crashed. Of course the doctors ( not all

of them) had to test me for everything that you could think of because they did

not believe " mold " could make you sick. A Lung Specialist that I saw, finally

stated the mycotoxins went systemic into my blood stream and caused the problem.

I feel like my days are numbered. I was having IVIG treatments, the next one was

to be 08/03/05 but just got a letter from Insurance from work and they dropped

me. This would have been my 6th one but the 3rd at 42grams of Immugammogolin. (

Infusions)

What to do now?

Peace,

Marcie

Barbra BW <bbw@...> wrote:

Re: mycotoxins and different responses to mold

I would add that mold/fungal systemic infections are a worse problem than

sick building because if you have fungal infection circulating in your body

that you cannot overcome, your immune system is constantly killing fungus

and producing mycotoxins INSIDE your body 24/7. Then avoidance doesn't

help. You can be in most sterile environment and still be sick with

mycotoxin because you are making it. That's why to me live mold is more

dangerous than dead, a debate here. If you don't get infected, you can get

away from the mold and the mycotoxins. If you get infected, you've got a

much bigger problem to overcome. A clean environment would help but you'll

still be sick.

[Norton AntiSpam] Re: [] What we have here.... is a

failure to communicate!

Kathy -

I understand about being concerned for others in the environment that got

you sick. But to some degree, we probably have to realize that we are the

coalmine canaries. In my situation, I was the first to get sick - days

before anyone else. Of those still living (two of the former building

occupants are dead, and another is dying at last report), I am the only one

still not sufficiently recovered to be working. The majority suffered what

appear to be respiratory problems rather than CFS.

My understanding at this point is that the sensitization is a progressive

thing. I had been exposed years earlier, and had already been sick from it

for a couple of years. The first time, I got better with time and distance

(and meds that masked the symptoms). This time, I just couldn't do it. Of

course, that marks me as a probable malingerer in the employer's eyes,

right?

Based on various things I have read and personal stories I have heard, I

have an idea that some people will detox slowly on their own over a period

of time and become functional again. As my local doc put it - you have to

think about total toxin load as well as mycotoxins and individual

vulnerabilities and exposures. Shoemaker can test for the genetic

vulnerability - but that alone does not describe everything that happens. A

lesser exposure in a healthier person not carrying a major toxin load (or a

male - they don't get this stuff nearly as often) is simply not going to be

the same thing as what happens to a vulnerable person already sensitized and

already carrying an existing toxin load - which is highly likely, given the

vulnerability and lack of available treatment for the vast majority of us.

At some point, you hit the limit of what that particular body can withstand.

You hit it. I hit it. All hell breaks loose, and it's never precisely the

same in any two people, nor even in

a single person all day, every day. Other people seem to do ok with lesser

measures such as avoidance techniques alone. For those who can't detox well

enough to regain their health, all the avoidance in the world won't get it

done. The poisons remain, endlessly recirculating inside the body and doing

their damage. Until those are addressed, things won't get better.

I take from this the thought that, the minute you hear a blanket statement

about mold, mycotoxins, how to deal with them, or how they affect everyone

(or on any other subject, for that matter!) - that is the time to stop and

think about what you're hearing, because that's an agenda - not an

experience. Shoemaker and the guys like him didn't arrive at their present

learning by generalizing first and getting specific later. The did the

opposite - listened to individual experiences, and eventually assimilated

that into an understanding of the whole, which could in turn be used to

benefit the individual. Good analytical work always operates in both

directions. You work from the specifics to the broader picture and back to

the specifics again. Systems are like that - whether they are buildings or

bodies or patterns of illness. Caring for and about mold victims is the

same. There may be broader " rules " and issues, but they only work insofar as

they serve the specific victim. And when they

don't, you have to re-check the original premise - or at least the

speaker's agenda. [The obvious Ayn Rand references omitted for brevity only!

; ) ]

In any case, your own experience or mine is just as valid as anyone else's.

The problems in communication only arise when we skip over that part and

insist on trying to drive a cubical spike into a circular receptacle with a

jackhammer. It not only doesn't work, it tends to annoy to the neighbors and

destroy both the spike and the receptacle in the process.

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

__________________________________________________

[Guest guest]

Marcie,

HOW did your insurance company drop you??!!!

My doctor has described my immune system in same terms. Did you have DHEA-S

levels checked? That's very important indicator also. It's not DHEA but

the -S is something different. Sulfate I think and it is very stable

amount, does not fluctuate. The lab that read my tests marked in pencil

next to reading, results equal to normal level for a 95 year old woman. I

am half that age. I've had it tested twice more and same results from

different labs. It is also has shown to be low in people who have or

develop cancer which I had surgery on in the Fall.

I feel my future looks gloomy too. I don't know how to get better but I am

working on it.

I've heard of this before but don't understand, especially since it sounds

like you have group through your employer.

barbb

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

From: " Marcie McGovern " <marcie1029@...>

> Barb,

> You just decribed my problem. I have fungal systemic infections all

> throughout my body. My Immune system has totally crashed. Of course the

> doctors ( not all of them) had to test me for everything that you could

> think of because they did not believe " mold " could make you sick. A Lung

> Specialist that I saw, finally stated the mycotoxins went systemic into my

> blood stream and caused the problem. I feel like my days are numbered. I

> was having IVIG treatments, the next one was to be 08/03/05 but just got a

> letter from Insurance from work and they dropped me. This would have been

> my 6th one but the 3rd at 42grams of Immugammogolin. ( Infusions)

> What to do now?

> Peace,

> Marcie

[Guest guest]

Barb,

I was sent home from work by the company on 01/21/05. They put me on Short Term

Disability. This was not my choice, but they said I could not come back. No

light duty. I have a whole read out of Lab results but at this time can not

remember what they all were. I am at a friend's house and the test results are

home. I do know that after the Doctor saw my first test results, he said my

Immune system was " frightingly low " . The company stated that my Short Term ran

out 06/21/05 and because I was not better....no job....no insurance. ( Via

letter in the mail) I have 0 income and no money except change in my purse.

Thanx,

Marcie

ra BW <bbw@...> wrote:

Marcie,

HOW did your insurance company drop you??!!!

My doctor has described my immune system in same terms. Did you have DHEA-S

levels checked? That's very important indicator also. It's not DHEA but

the -S is something different. Sulfate I think and it is very stable

amount, does not fluctuate. The lab that read my tests marked in pencil

next to reading, results equal to normal level for a 95 year old woman. I

am half that age. I've had it tested twice more and same results from

different labs. It is also has shown to be low in people who have or

develop cancer which I had surgery on in the Fall.

I feel my future looks gloomy too. I don't know how to get better but I am

working on it.

I've heard of this before but don't understand, especially since it sounds

like you have group through your employer.

barbb

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

From: " Marcie McGovern " <marcie1029@...>

> Barb,

> You just decribed my problem. I have fungal systemic infections all

> throughout my body. My Immune system has totally crashed. Of course the

> doctors ( not all of them) had to test me for everything that you could

> think of because they did not believe " mold " could make you sick. A Lung

> Specialist that I saw, finally stated the mycotoxins went systemic into my

> blood stream and caused the problem. I feel like my days are numbered. I

> was having IVIG treatments, the next one was to be 08/03/05 but just got a

> letter from Insurance from work and they dropped me. This would have been

> my 6th one but the 3rd at 42grams of Immugammogolin. ( Infusions)

> What to do now?

> Peace,

> Marcie

FAIR USE NOTICE:

[Guest guest]

Marcie,

What a horrible story.

Doesn't company have to by law have to offer you Cobra coverage? I guess

you couldn't afford premiums anyway.

You should apply for SSDI and in the meantime check with your state.

Sometimes states have a disability program to fill in while someone waits

for federal disability. There are food stamps. Run around to all the

charity organizations. I have had people work for me to care for family

members who were low wage earners and they knew all the places to go get

free stuff. I paid unemployment on them and when I had no work for them, I

told them they should apply. They had benefits coming to them. They worked

for me for three years fulltime. They said no they could get more money

faster by applying for welfare. They both had kids. Then they got other

assistance within a week or so. When I was low on funds I didn't know, I

just suffered and also stayed with a friend, for medical reason too.

Do you AT LEAST follow a low carb diet? I hope you say yes. Even though

you are so thin, you should. Fungal infection AND Candida which is a fungus

also, feed off of blood sugar. When patients don't respond to anti-fungal

treatments, usually doctor says go on low carb diet as a solution. It

doesn't solve problem, but prevents it from getting worse or can.

Any low carb diet would do, the Zone Diet, the South Beach Diet or you could

follow an anti-Candida diet, which is the same. There are a number of

versions but

I belong to a group for help to follow one at:

candida treatment/

Re: Re: [] What we have here.... is a failure to

communicate!

> Barb,

> I was sent home from work by the company on 01/21/05. They put me on Short

> Term Disability. This was not my choice, but they said I could not come

> back. No light duty. I have a whole read out of Lab results but at this

> time can not remember what they all were. I am at a friend's house and the

> test results are home. I do know that after the Doctor saw my first test

> results, he said my Immune system was " frightingly low " . The company

> stated that my Short Term ran out 06/21/05 and because I was not

> better....no job....no insurance. ( Via letter in the mail) I have 0

> income and no money except change in my purse.

> Thanx,

> Marcie

> ra BW <bbw@...> wrote:

> Marcie,

> HOW did your insurance company drop you??!!!

> My doctor has described my immune system in same terms. Did you have

> DHEA-S

> levels checked? That's very important indicator also. It's not DHEA but

> the -S is something different. Sulfate I think and it is very stable

> amount, does not fluctuate. The lab that read my tests marked in pencil

> next to reading, results equal to normal level for a 95 year old woman. I

> am half that age. I've had it tested twice more and same results from

> different labs. It is also has shown to be low in people who have or

> develop cancer which I had surgery on in the Fall.

> I feel my future looks gloomy too. I don't know how to get better but I

> am

> working on it.

> I've heard of this before but don't understand, especially since it sounds

> like you have group through your employer.

> barbb

> ----- Original Message -----

> From: " Marcie McGovern " <marcie1029@...>

>

>

>> Barb,

>> You just decribed my problem. I have fungal systemic infections all

>> throughout my body. My Immune system has totally crashed. Of course the

>> doctors ( not all of them) had to test me for everything that you could

>> think of because they did not believe " mold " could make you sick. A Lung

>> Specialist that I saw, finally stated the mycotoxins went systemic into

>> my

>> blood stream and caused the problem. I feel like my days are numbered. I

>> was having IVIG treatments, the next one was to be 08/03/05 but just got

>> a

>> letter from Insurance from work and they dropped me. This would have been

>> my 6th one but the 3rd at 42grams of Immugammogolin. ( Infusions)

>> What to do now?

>> Peace,

>> Marcie

>

>

>

>

> FAIR USE NOTICE:

>

>

>

>

>

>

[Guest guest]

Oops. I meant for this to go direct to Marcie.

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

From: " Barbra BW " <bbw@...>

> Marcie,

> What a horrible story.

> Doesn't company have to by law have to offer you Cobra coverage? I guess

> you couldn't afford premiums anyway.

>

[Guest guest]

Cobra is touchy and beleive it or not can vary in the states even though

its a federal program.

When I was an office manager we had to send out certified return recepit

requested letter offering COBRA and explaining that life insurance would

not be offered and that their policy would remain the same (deductibles

etc.).

The company is ALLOWED to charge a *surcharge* for administering your

policy. YOu also are alloted a 31 day grace period same time frame as

their master policy.

I know that if you quit a job then they do not have to offer cobra.

Also, I BELIEVE that family members may not be covered....then again I

only had dealt with single employees on cobra.

On Sun, 31 Jul 2005, Barbra BW wrote:

> Date: Sun, 31 Jul 2005 23:09:36 -0400

> From: Barbra BW <bbw@...>

> Reply-

>

> Subject: Re: Re: [] What we have here.... is a failure to

> communicate!

>

> Marcie,

> What a horrible story.

> Doesn't company have to by law have to offer you Cobra coverage? I guess

> you couldn't afford premiums anyway.

> You should apply for SSDI and in the meantime check with your state.

> Sometimes states have a disability program to fill in while someone waits

> for federal disability. There are food stamps. Run around to all the

> charity organizations. I have had people work for me to care for family

> members who were low wage earners and they knew all the places to go get

> free stuff. I paid unemployment on them and when I had no work for them, I

> told them they should apply. They had benefits coming to them. They worked

> for me for three years fulltime. They said no they could get more money

> faster by applying for welfare. They both had kids. Then they got other

> assistance within a week or so. When I was low on funds I didn't know, I

> just suffered and also stayed with a friend, for medical reason too.

> Do you AT LEAST follow a low carb diet? I hope you say yes. Even though

> you are so thin, you should. Fungal infection AND Candida which is a fungus

> also, feed off of blood sugar. When patients don't respond to anti-fungal

> treatments, usually doctor says go on low carb diet as a solution. It

> doesn't solve problem, but prevents it from getting worse or can.

> Any low carb diet would do, the Zone Diet, the South Beach Diet or you could

> follow an anti-Candida diet, which is the same. There are a number of

> versions but

> I belong to a group for help to follow one at:

>

> candida treatment/

> Re: Re: [] What we have here.... is a failure to

> communicate!

>

>

>> Barb,

>> I was sent home from work by the company on 01/21/05. They put me on Short

>> Term Disability. This was not my choice, but they said I could not come

>> back. No light duty. I have a whole read out of Lab results but at this

>> time can not remember what they all were. I am at a friend's house and the

>> test results are home. I do know that after the Doctor saw my first test

>> results, he said my Immune system was " frightingly low " . The company

>> stated that my Short Term ran out 06/21/05 and because I was not

>> better....no job....no insurance. ( Via letter in the mail) I have 0

>> income and no money except change in my purse.

>> Thanx,

>> Marcie

>> ra BW <bbw@...> wrote:

>> Marcie,

>> HOW did your insurance company drop you??!!!

>> My doctor has described my immune system in same terms. Did you have

>> DHEA-S

>> levels checked? That's very important indicator also. It's not DHEA but

>> the -S is something different. Sulfate I think and it is very stable

>> amount, does not fluctuate. The lab that read my tests marked in pencil

>> next to reading, results equal to normal level for a 95 year old woman. I

>> am half that age. I've had it tested twice more and same results from

>> different labs. It is also has shown to be low in people who have or

>> develop cancer which I had surgery on in the Fall.

>> I feel my future looks gloomy too. I don't know how to get better but I

>> am

>> working on it.

>> I've heard of this before but don't understand, especially since it sounds

>> like you have group through your employer.

>> barbb

>> ----- Original Message -----

>> From: " Marcie McGovern " <marcie1029@...>

>>

>>

>>> Barb,

>>> You just decribed my problem. I have fungal systemic infections all

>>> throughout my body. My Immune system has totally crashed. Of course the

>>> doctors ( not all of them) had to test me for everything that you could

>>> think of because they did not believe " mold " could make you sick. A Lung

>>> Specialist that I saw, finally stated the mycotoxins went systemic into

>>> my

>>> blood stream and caused the problem. I feel like my days are numbered. I

>>> was having IVIG treatments, the next one was to be 08/03/05 but just got

>>> a

>>> letter from Insurance from work and they dropped me. This would have been

>>> my 6th one but the 3rd at 42grams of Immugammogolin. ( Infusions)

>>> What to do now?

>>> Peace,

>>> Marcie

>>

>>

>>

>>

>> FAIR USE NOTICE:

>>

>>

>>

>>

>>

>>

[Guest guest]

There is only ONE thing that will fit all...if the body can not eliminate

the toxins nothing else is going to help them.

Organic foods, filtered water, detox herbs/protocls...if the lymphatic

system is stagnated...none of the above will work/help asit has no where

to go.

On Sun, 31 Jul 2005, SERENA EDWARDS wrote:

> Date: Sun, 31 Jul 2005 21:23:54 -0700 (PDT)

> From: SERENA EDWARDS <pushcrash@...>

> Reply-

>

> Subject: Re: [] Re: What we have here.... is a failure to

> communicate!

>

> Moldy apples and oranges, . I haven't moved outdoors, and you and Jonathon

haven't done the Shoemaker Protocol in its entirety. We have had two very

different experiences with this thing in some ways. Not everyone can get well

using avoidance alone, and not everyone is going to be capable of practicing the

same brand of extreme avoidance you advocate. Shoemaker understands this. That

may be why he didn't write, " 's way is the only way, " any more than he's

ever going to write, " Serena's experience is more valid than anyone else's. "

There simply is no one-size-fits-all solution, and no acceptable casualty rate.

Following that kind of thinking is what gets little kids shot up with thimerosol

by the millions.

>

> My only point is that all measures have to be tailored to the conditions and

capabilities of the individual sufferer in question, and that requires listening

to them AS individuals. We are not up-or-down votes on an agenda of any kind.

Osler said to listen and each patient will tell you what is wrong. The implied

extension of that idea is to hear them, and they will also tell you how to best

help them.

>

>

>

> Serena

> www.freeboards.net/index.php?mforum=sickgovernmentb

>

> __________________________________________________

>

[Guest guest]

, for the last time, WHY must eveything turn into a debate with you? Is it

because your way IS the highway? Never mind. Purely rhetorical.

I'm glad you're well and welcome to it. You have a lifestyle not suitable to

most people, and downright impossible for many, and them's the breaks. I'm not

here to defend myself ad nauseam, and have told you before that I will not

bother to do so. That's entirely outside my purpose.

Have a Nice Day,

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

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

Start your day with - make it your home page

[Guest guest]

Serena,

This is so important and what doctors don't try to do all frequently, is

just listen to the patient. This is one of the principle problems, no ears.

I could not live outdoors unless I gave up my job that I work parttime now.

I need a mailbox, phone, someplace to shower and change.

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

From: " SERENA EDWARDS " <pushcrash@...>

> My only point is that all measures have to be tailored to the conditions

> and capabilities of the individual sufferer in question, and that requires

> listening to them AS individuals. We are not up-or-down votes on an agenda

> of any kind. Osler said to listen and each patient will tell you what is

> wrong. The implied extension of that idea is to hear them, and they will

> also tell you how to best help them.

[Guest guest]

, the only thing I might react to at the moment is your repeated insinuation

that I am both an idiot and a liar. But I won't. There's a whole lot more toxic

stuff in the world than that produced by fungi. Most of it is a whole lot easier

to spot and far simpler to avoid.

My purposes here are extremely simple and straightforward. First is to get well

myself, which I am doing. Second is to do everything I can to make sure no one

else has to needlessly live the same nightmare I have dealt with for the last 10

years. Over the last few months, I have been taking actions to carry out some

very specific goals related to this issue. When the time is right I will make

the specifics known. Meanwhile, every energy drain outside those parameters is

an irrelevant waste of time and energy that serves no one.

Have Nice Life,

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

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

Start your day with - make it your home page