(no subject)

[Guest guest]

I hope it wasn't ME that said that to you! I am not a big fan of steroid

inhalers, because they aren't good for long term use with things like HP or

ABPA from what I understand. But I know with my own daughter, sometimes

she has to use them. It wasn't me, was it? If it was, I am so sorry.

In a message dated 2/28/2011 5:09:12 P.M. Pacific Standard Time,

Gingersnap1964@... writes:

but telling me not to use an inhaler that saves my

life..........................

[Guest guest]

Thank you Sharon and you keep up the good fight too

In a message dated 2/28/2011 8:49:02 P.M. Eastern Standard Time,

snk1955@... writes:

Janet,

Yes. I do know your story. Its awful of what happened to you. I also

know how hard you have worked to get people, decision makers, to listen.

Can't speak for the asthma. Sometimes people post thoughts on chatboards

of what they THINK. But they forget to add the disclaimer " I

think " ...While we usually seem to discuss CIRS - WDB, and HP,

Aspergillosis, etc, more

than asthma and a lot of times HP is misdiagnosed as asthma; asthma is a

very serious illness, too. Ebony Gage from Philly who got severe brain

damage

after an attack, could tell one that if she could still speak.

I am sorry if anyone made you feel like they were diagnosing you from a

chat board and telling you that you were wrong with what you think about

your

own body. I think you have been dealing with this illness long enough that

you most likely know what this has done to you and what works to help

curtail the symptoms.

Keep up the good fight!!

Sharon

In a message dated 2/28/2011 4:51:40 P.M. Pacific Standard Time,

_dragonflymcs@..._ (mailto:dragonflymcs@...) writes:

I think that is what you may have read into it. If it had been that they

would

not have put the post threw. If I remember correctly Dr Thrasher said in

his

post TOO it may not be asthma but RADS. Others replied the same.

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " __Gingersnap1964@..._ (mailto:_Gingersnap1964@...) _

(mailto:_Gingersnap1964@..._ (mailto:Gingersnap1964@...) ) "

<__Gingersnap1964@..._ (mailto:_Gingersnap1964@...) _

(mailto:_Gingersnap1964@..._ (mailto:Gingersnap1964@...) ) >

__ _

(mailto:_ ) _

(mailto:_ _

(mailto: ) )

Sent: Mon, February 28, 2011 11:42:04 AM

Subject: [] (no subject)

Sharon I do nor remember who it was but I wrote about my asthma attack and

was told I dont have it I have something else and not to use my steroid

inhaler. I have to it is the only thing keeping me alive right now and I

HAVE

been diagnosed with ASTHNA by three doctors. That is what upset me. We are

here to help not to hinder. I thinbk its fabulous what you are doing. You

know my story.

Janet

[Non-text portions of this message have been removed]

[Guest guest]

I think that is what you may have read into it. If it had been that they would

not have put the post threw. If I remember correctly Dr Thrasher said in his

post TOO it may not be asthma but RADS. Others replied the same.

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " Gingersnap1964@... " <Gingersnap1964@...>

Sent: Mon, February 28, 2011 11:42:04 AM

Subject: [] (no subject)

Sharon I do nor remember who it was but I wrote about my asthma attack and

was told I dont have it I have something else and not to use my steroid

inhaler. I have to it is the only thing keeping me alive right now and I HAVE

been diagnosed with ASTHNA by three doctors. That is what upset me. We are

here to help not to hinder. I thinbk its fabulous what you are doing. You

know my story.

Janet

[Guest guest]

I was DX asthama, I did not have asthma... I have RADS and VCD

............. the inhalers made me worse I noticed quickly, I did not say not to

use one, I said steroids are not good, I have inhaler with no steroids . That

made a difference for me no steroids, avoid the triggers

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " Gingersnap1964@... " <Gingersnap1964@...>

Sent: Mon, February 28, 2011 7:57:46 PM

Subject: Re: [] (no subject)

but telling me not to use an inhaler that saves my

life..........................

In a message dated 2/28/2011 7:51:40 P.M. Eastern Standard Time,

dragonflymcs@... writes:

I think that is what you may have read into it. If it had been that they

would

not have put the post threw. If I remember correctly Dr Thrasher said in

his

post TOO it may not be asthma but RADS. Others replied the same.

God Bless !!

dragonflymcs

Mayleen

[Guest guest]

Yes and a friend of mines sister passed from an asthma attack as well. Asthma

is serious, just misdiagnoses is so common in WDB. I made suggestions not a

diagnosis. I do not think anyone here would diagnose anyone else. My friend

got steroids too and now she may have crushing and it made her worse, not

better from a WDB.

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " snk1955@... " <snk1955@...>

Sent: Mon, February 28, 2011 8:13:42 PM

Subject: Re: [] (no subject)

Janet,

Yes. I do know your story. Its awful of what happened to you. I also

know how hard you have worked to get people, decision makers, to listen.

Can't speak for the asthma. Sometimes people post thoughts on chatboards

of what they THINK. But they forget to add the disclaimer " I

think " ...While we usually seem to discuss CIRS - WDB, and HP, Aspergillosis,

etc, more

than asthma and a lot of times HP is misdiagnosed as asthma; asthma is a

very serious illness, too. Ebony Gage from Philly who got severe brain damage

after an attack, could tell one that if she could still speak.

I am sorry if anyone made you feel like they were diagnosing you from a

chat board and telling you that you were wrong with what you think about your

own body. I think you have been dealing with this illness long enough that

you most likely know what this has done to you and what works to help

curtail the symptoms.

Keep up the good fight!!

Sharon

[Guest guest]

I agree with you each to his own body I know what I need and what I

cant do by now

Janet

In a message dated 3/1/2011 10:33:31 A.M. Eastern Standard Time,

jeaninem660@... writes:

I think there can be a few different things going on with the lungs and

sometimes with time those conditions can change, so what one might not be able

to tollerate early on, they might tolerate later.

theres med's I couldn't tolerate for a long time but can now and if I fell

I need them ,I dont care what anybody here says.

no one hear can put theirself in anybody elses shoes.

to me, I relate the intolerance of steroids to CNS and PNS damage because

thats what if affected most with me, I may never tolerate them.

some may. with time our bodies do try to heal, for some better than

others, not everyone here has RADS, some may have HP, some may have asthma. I

tottally believe that some peoples exposures can be mostly allergy related and

they can get very ill from that alone, not saying they were not exposed to

everything else that can be involved in a WDB exposure, only that any WDB

can be different and it's possable that some can get allergy and

autoimmunity and very ill and that can be the main think they are dealing with.

not

everyone here has candida

or continues to have it at a severe level after exposure.

>

> Yes and a friend of mines sister passed from an asthma attack as well.

Asthma

> is serious, just misdiagnoses is so common in WDB. I made suggestions

not a

> diagnosis. I do not think anyone here would diagnose anyone else. My

friend

> got steroids too and now she may have crushing and it made her worse, not

> better from a WDB.

>

> God Bless !!

> dragonflymcs

> Mayleen

[Guest guest]

I think there can be a few different things going on with the lungs and

sometimes with time those conditions can change, so what one might not be able

to tollerate early on, they might tolerate later.

theres med's I couldn't tolerate for a long time but can now and if I fell I

need them ,I dont care what anybody here says.

no one hear can put theirself in anybody elses shoes.

to me, I relate the intolerance of steroids to CNS and PNS damage because thats

what if affected most with me, I may never tolerate them.

some may. with time our bodies do try to heal, for some better than others, not

everyone here has RADS, some may have HP, some may have asthma. I tottally

believe that some peoples exposures can be mostly allergy related and they can

get very ill from that alone, not saying they were not exposed to everything

else that can be involved in a WDB exposure, only that any WDB can be different

and it's possable that some can get allergy and autoimmunity and very ill and

that can be the main think they are dealing with. not everyone here has candida

or continues to have it at a severe level after exposure.

>

> Yes and a friend of mines sister passed from an asthma attack as well.

Asthma

> is serious, just misdiagnoses is so common in WDB. I made suggestions not a

> diagnosis. I do not think anyone here would diagnose anyone else. My

friend

> got steroids too and now she may have crushing and it made her worse, not

> better from a WDB.

>

> God Bless !!

> dragonflymcs

> Mayleen

[Guest guest]

I dont like taking them either but for my asthma I have to at times

In a message dated 3/1/2011 3:00:46 P.M. Eastern Standard Time,

dragonflymcs@... writes:

Exactly not everyone gets the same things. My comment was based on my

readings

from Dr T. I would never take steroids myself for my condition from WDB

[Guest guest]

Thank you Debbie. I know what I need for my body and I know people said

steroids were not good. But I have to use the inhaler to breathe right now.

Its ok if people dont agree with that. You gotta do what you gotta do.

Janet

In a message dated 3/1/2011 6:42:03 P.M. Eastern Standard Time,

deb172@... writes:

Janet,

I'm sorry you seem incensed over advice or warnings posted about your

inhaler. It's my belief that people are just sharing what has worked for them

or warning about what has harmed them. If I remember correctly, your inhaler

is a steroid. There exist warnings for use of steroids by mold patients.

Dr Shoemaker mentioned somewhere in 'Surviving Mold' (sorry, I'm still

searching for the page number) to avoid steroids unless under threat of death.

If your inhaler is life saving, that fits the bill. I was able to find a

warning about cortisol on p68, but he specifically talks of cortisol

(predinsone, hydrocortisone,etc.) taken by mouth. Not sure if these warnings

apply

to inhalers or not.

Hope the info was helpful,

Debbie

--- In _ _

(mailto: ) , Gingersnap1964@... wrote:

>

> but telling me not to use an inhaler that saves my

> life..........................

[Guest guest]

I dont use one all the time. I havent in two years bout of bronchitis

stirred it up

Janet

In a message dated 3/1/2011 6:40:27 P.M. Eastern Standard Time,

dragonflymcs@... writes:

Have you ever tried just the inhalers alone?

I have inhaler, no steroids. I found myself for me that the inhalers with

S

were making it worse. TG I found this out quickly like in 2 uses. I

changed

inhalers now I hardly ever need one. I cannot even remember the last time

I

used one. It was so long ago it expired before I used the inhaler. I still

have inhalers.

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " _Gingersnap1964@..._ (mailto:Gingersnap1964@...) "

<_Gingersnap1964@..._ (mailto:Gingersnap1964@...) >

_ _ (mailto: )

Sent: Tue, March 1, 2011 3:10:27 PM

Subject: Re: [] Re: (no subject)

I dont like taking them either but for my asthma I have to at times

[Guest guest]

It's on page 138 of Mold Warriors ~ " The role of ACTH in the presence of

symptoms in mold illness was proof of why treatment with steroids,

including prednisone, was like " throwing gasoline on the fire. " I can't tell

you

how many disasters I've seen following misdiagnosis of biotoxin illness that

led the attending physician to conclude that steroid treatment was

necessary. From blindness in Pfiesteria and Lyme patients to dramatic

worsening

of everything in mold victims, steroids are the greatest poison. "

Sue R.

I'm sorry you seem incensed over advice or warnings posted about your

inhaler. It's my belief that people are just sharing what has worked for them

or warning about what has harmed them. If I remember correctly, your inhaler

is a steroid. There exist warnings for use of steroids by mold patients.

Dr Shoemaker mentioned somewhere in 'Surviving Mold' (sorry, I'm still

searching for the page number) to avoid steroids unless under threat of death.

If your inhaler is life saving, that fits the bill. I was able to find a

warning about cortisol on p68, but he specifically talks of cortisol

(predinsone, hydrocortisone,etc.) taken by mouth. Not sure if these warnings

apply

to inhalers or not.

[Guest guest]

Janet,

Yea. That's the same thing for my daughter. We try to avoid steroids

like the plague cuz prednizone literally makes her turn into a different

person. But, sometimes she NEEDS that inhaler. Not often, but sometimes.

There never seems to be any hard, fast rules with these fungal and water

damaged building illnesses. Throw a little chemical exposure in there, and the

mix gets even more complex of what is needed.

Ya gotta do what ya gotta do.

In a message dated 3/1/2011 4:17:28 P.M. Pacific Standard Time,

Gingersnap1964@... writes:

Thank you Debbie. I know what I need for my body and I know people said

steroids were not good. But I have to use the inhaler to breathe right

now.

Its ok if people dont agree with that. You gotta do what you gotta do.

Janet

[Guest guest]

Exactly not everyone gets the same things. My comment was based on my readings

from Dr T. I would never take steroids myself for my condition from WDB as I

previously stated because inALL patient study cases I have read every single

patient died shortly after the steroids. ALL of them. Therefore I would never

take them. Years ago before all of this I was given that stuff for an injury

and it also made my condition worse, plus the side effects from it. It took

years to get it out of my system. I want nothing to do with them.

My friend got beginnings of cushings syndrome from steroids, they made her WDB

exposure worse too.

God Bless !!

dragonflymcs

Mayleen

________________________________

From: osisposis <jeaninem660@...>

Sent: Tue, March 1, 2011 9:55:10 AM

Subject: [] Re: (no subject)

I think there can be a few different things going on with the lungs and

sometimes with time those conditions can change, so what one might not be able

to tollerate early on, they might tolerate later.

theres med's

[Guest guest]

I think it's over prescribed probably because doctors never consider fungus as a

source of problem whereas it might be the most likely source. Most people I

know who have been on steriods feel much worse and appear to get worse. It was

interesting to hear Pat's experience bec I was beginning to feel it wasn't good

for anything so information on both sides is good.

>

> Exactly not everyone gets the same things. My comment was based on my

readings

> from Dr T.

[Guest guest]

Yes, they are prescribed for any and all inflammations, pain etc. Autoimmune

issues you name it they give you steroids. Medicine has no cure for anything

only band aids for symptoms. There have got to be treatments that actually

help fix the problem, not fix the symptoms. But what was given for the

cladosporium??? Mycotoxins. Did you see mystery diagnosis ??

God Bless !!

dragonflymcs

Mayleen

________________________________

From: barb b w <barb1283@...>

Sent: Tue, March 1, 2011 3:03:40 PM

Subject: [] Re: (no subject)

I think it's over prescribed probably because doctors never consider fungus as a

source of problem whereas it might be the most likely source. Most people I

know who have been on steriods feel much worse and appear to get worse. It was

interesting to hear Pat's experience bec I was beginning to feel it wasn't good

for anything so information on both sides is good.

--- In

[Guest guest]

Have you ever tried just the inhalers alone?

I have inhaler, no steroids. I found myself for me that the inhalers with S

were making it worse. TG I found this out quickly like in 2 uses. I changed

inhalers now I hardly ever need one. I cannot even remember the last time I

used one. It was so long ago it expired before I used the inhaler. I still

have inhalers.

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " Gingersnap1964@... " <Gingersnap1964@...>

Sent: Tue, March 1, 2011 3:10:27 PM

Subject: Re: [] Re: (no subject)

I dont like taking them either but for my asthma I have to at times

[Guest guest]

Janet,

I'm sorry you seem incensed over advice or warnings posted about your inhaler.

It's my belief that people are just sharing what has worked for them or warning

about what has harmed them. If I remember correctly, your inhaler is a steroid.

There exist warnings for use of steroids by mold patients. Dr Shoemaker

mentioned somewhere in 'Surviving Mold' (sorry, I'm still searching for the page

number) to avoid steroids unless under threat of death. If your inhaler is life

saving, that fits the bill. I was able to find a warning about cortisol on p68,

but he specifically talks of cortisol (predinsone, hydrocortisone,etc.) taken by

mouth. Not sure if these warnings apply to inhalers or not.

Hope the info was helpful,

Debbie

>

> but telling me not to use an inhaler that saves my

> life..........................

[Guest guest]

Sorry about your bronchitis. I just got over a serious infection myself. With

no help from any Dr. I know personally what it feels like not to be able to

breathe. have you been tested for HP ?

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " Gingersnap1964@... " <Gingersnap1964@...>

Sent: Tue, March 1, 2011 6:56:11 PM

Subject: Re: [] Re: (no subject)

I dont use one all the time. I havent in two years bout of bronchitis

stirred it up

Janet

[Guest guest]

Thank you, i was trying to help but was misinterpreted. It has been posted here

too and should be in the files.

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " ssr3351@... " <ssr3351@...>

Sent: Tue, March 1, 2011 6:56:19 PM

Subject: Re: [] Re: (no subject)

It's on page 138 of Mold Warriors ~ " The role of ACTH in the presence of

symptoms in mold illness was proof of why treatment with steroids,

including prednisone, was like " throwing gasoline on the fire. " I can't tell

you

how many disasters I've seen following misdiagnosis of biotoxin illness that

led the attending physician to conclude that steroid treatment was

necessary. From blindness in Pfiesteria and Lyme patients to dramatic

worsening

of everything in mold victims, steroids are the greatest poison. "

Sue R.

---

I'm sorry you seem incensed over advice or warnings posted about your

inhaler. It's my belief that people are just sharing what has worked for them

or warning about what has harmed them.

[Guest guest]

no I have not what is HP ?

Janet

In a message dated 3/1/2011 10:54:21 P.M. Eastern Standard Time,

dragonflymcs@... writes:

Sorry about your bronchitis. I just got over a serious infection myself.

With

no help from any Dr. I know personally what it feels like not to be able

to

breathe. have you been tested for HP ?

God Bless !!

dragonflymcs

Mayleen

[Guest guest]

I totally agree with you but I have seen many mold patients who have been

on steroids for yrs. which I don't think is a very good idea. One lady I

worked with (before finding out what was really wrong with her) was on and

off steroids for over 2 yrs. Each time she was weaned off of them she ended

up back in the ER almost dying. They would put her right back on the

steroids. One visit to a very renowned hospital in Baltimore told her she could

take them for life. She was only 32 yrs. old. Same hospital told her that her

rash (after doing many tests) must just be hives!! Also told her that

mold could not cause her symptoms. Told her it was Still's Disease & sent her

to a rheumatologist. She finally did see the right Dr. and in about 3

months was doing 100% better & off steroids, however she didn't like taking

the CSM, the travel time and still wanted to go stay in places at the beach

that weren't a good environment. So she's back on steroids & rhematoid meds

and not very well. SSR

have worked in the medical field for many years caring for patients. Its

important to remember that every medication has its place. There are several

people here who use steroids and then we have the people on the other side

who caution the use of them. Here is where I stand. Steroids are the kind

of prescription that can save a life when all else fails or take a life if

not used properly. I have seen it do both. I had a nephew with juvenile

lupus who would not have survived without this medication. I guess what I am

saying is, keep an open mind folks and remember its not " a one size fits

all " ... as all of us here very well know~ D

[Guest guest]

I have worked in the medical field for many years caring for patients. Its

important to remember that every medication has its place. There are several

people here who use steroids and then we have the people on the other side who

caution the use of them. Here is where I stand. Steroids are the kind of

prescription that can save a life when all else fails or take a life if not used

properly. I have seen it do both. I had a nephew with juvenile lupus who would

not have survived without this medication. I guess what I am saying is, keep an

open mind folks and remember its not " a one size fits all " ... as all of us here

very well know~ D

>

>

> It's on page 138 of Mold Warriors ~ " The role of ACTH in the presence of

> symptoms in mold illness was proof of why treatment with steroids,

> including prednisone, was like " throwing gasoline on the fire. " I can't tell

you

> how many disasters I've seen following misdiagnosis of biotoxin illness that

> led the attending physician to conclude that steroid treatment was

> necessary. From blindness in Pfiesteria and Lyme patients to dramatic

worsening

> of everything in mold victims, steroids are the greatest poison. "

> Sue R.

>

>

[Guest guest]

well said

In a message dated 3/2/2011 6:48:33 P.M. Eastern Standard Time,

ssr3351@... writes:

I totally agree with you but I have seen many mold patients who have been

on steroids for yrs. which I don't think is a very good idea. One lady I

worked with (before finding out what was really wrong with her) was on and

off steroids for over 2 yrs. Each time she was weaned off of them she

ended

up back in the ER almost dying. They would put her right back on the

steroids. One visit to a very renowned hospital in Baltimore told her she

could

take them for life. She was only 32 yrs. old. Same hospital told her that

her

rash (after doing many tests) must just be hives!! Also told her that

mold could not cause her symptoms. Told her it was Still's Disease & sent

her

to a rheumatologist. She finally did see the right Dr. and in about 3

months was doing 100% better & off steroids, however she didn't like

taking

the CSM, the travel time and still wanted to go stay in places at the

beach

that weren't a good environment. So she's back on steroids & rhematoid

meds

and not very well. SSR

have worked in the medical field for many years caring for patients. Its

important to remember that every medication has its place. There are

several

people here who use steroids and then we have the people on the other side

who caution the use of them. Here is where I stand. Steroids are the kind

of prescription that can save a life when all else fails or take a life if

not used properly. I have seen it do both. I had a nephew with juvenile

lupus who would not have survived without this medication. I guess what I

am

saying is, keep an open mind folks and remember its not " a one size fits

all " ... as all of us here very well know~ D

[Non-text portions of this message have been removed]

[Guest guest]

thanks for the info

In a message dated 3/2/2011 6:40:03 P.M. Eastern Standard Time,

dragonflymcs@... writes:

HP is Hypersensitivity Pnuemonitis. You can get from contaminates of the

WDB.

Leaves you breathless too. Is your Dr and expert in WDB ?

Here is some info :

_http://www.mold-survivor.com/symptoms.html_

(http://www.mold-survivor.com/symptoms.html)

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " _Gingersnap1964@..._ (mailto:Gingersnap1964@...) "

<_Gingersnap1964@..._ (mailto:Gingersnap1964@...) >

_ _ (mailto: )

Sent: Wed, March 2, 2011 9:11:37 AM

Subject: Re: [] Re: (no subject)

no I have not what is HP ?

Janet

[Guest guest]

HP is Hypersensitivity Pnuemonitis. You can get from contaminates of the WDB.

Leaves you breathless too. Is your Dr and expert in WDB ?

Here is some info :

http://www.mold-survivor.com/symptoms.html

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " Gingersnap1964@... " <Gingersnap1964@...>

Sent: Wed, March 2, 2011 9:11:37 AM

Subject: Re: [] Re: (no subject)

no I have not what is HP ?

Janet