Re: Leaving/ posting requests

[Guest guest]

We have some new members and new members always have more questions than members

who have been here awhile but things will die down again. In the mean time it

would helpful to send 'thank yous' directly to the person you are thanking. I

used to delete 'thank you' and then there was some unhappiness about that so I

started to put them through again but with the volume now, pls respond directly

to person if your message is a casual one to just that person and is not of

importance to the whole group.

How to do that: 1.) make sure you are set up to get mail 'full featured' because

it gives you link to reply direct to person, rather than the whole group. 2.)

trim your posts of trailing posts so they don't look overwhelming and also to

make the sickbuilding digest easy to read. Also, the shorter your post is, the

more likely people will read it and respond, so try to give just important facts

and skips the extras.

Most of the off topic posts that go through are related to treatment of person

ill from exposure to WDB so they go through. For example, fleas, not sick

building exactly but if you have become intolerant of chemicals, it's a problem.

It will slow down again. Just some people needing some help!

>

> The amount of non-relevant posts in the last month is beyond my level of

tolerance.

>

>

[Guest guest]

even if you are reading posts by going to the site instead of reading emails,

when you click on a post, look to your right where the posters Id is listed,

there should be a " send email " under there name, click on that and you can send

them a email that doesn't get posted to the group. you can even cut and paste

that post and add it to that email if needed.

> >

> > The amount of non-relevant posts in the last month is beyond my level of

tolerance.

> >

> >

>

[Guest guest]

I agree, there are a lot of posts in SB that have nothing to do with housing

problems. 

There are other for the chemically sensitive. 

ChemicalInjurySupport and GreenCanary are good groups.  MCSrs can ask anything

about health, cleaning, products for your pets, even yard work products, etc. 

 

....Corky

 

...........Most of the off topic posts that go through are related to treatment

of person ill from exposure to WDB so they go through. For example, fleas, not

sick building exactly but if you have become intolerant of chemicals, it's a

problem. It will slow down again. Just some people needing some help!

>

> The amount of non-relevant posts in the last month is beyond my level of

tolerance.

>

>[snipped]

[Guest guest]

I really don't understand all the fuss. I for one think this is a wonderful

group of people that have been a tremendous help and support to me over

MANY years. Even though there have been differences of opinion from time to

time that's all just part of life!!

I don't know what I would have done with out the many helpful people in

this group. We are sick or know someone who is and some are worse off than

others but the support is what is so very important! We need each other

too much and we certainly aren't going to get anywhere if we are divided.

Let's continue to reach out and help each other I think for many it's about

all there is. I have learned a lot of the years and the most important

thing is finding people out there just like me who need each other.

Sue R.

Health issues of moldies have been a part of since I have

been here, in 2004, so big change. If people want to kick health issues of

moldies off the board, we have to make that decision. As for the 'thank

you's. A lot of people left and then people said 'oh no, don't go' and then

came

back and they were glad because they are experts we are glad to have. That

is not something that usually happens. Lets not take a once in awhile

incident and fall apart over it.

[Guest guest]

I agree Janet

In a message dated 8/27/2010 8:05:59 P.M. Eastern Daylight Time,

jeaninem660@... writes:

I'd hate to think of where we'd be if health issues weren't a part of this

forum. who said we were only supposed to talk about houseing problems? I've

never heard that before.

>

> >

> > I agree, there are a lot of posts in SB that have nothing to do with

housing problems.Â

> > There are other for the chemically sensitive.Â

ChemicalInjurySupport and GreenCanary are good groups. MCSrs can ask

anything

about health, cleaning, products for your pets, even yard work products, etc.Â

> > Â

> > ...Corky

>

[Guest guest]

Health issues of moldies have been a part of since I have been

here, in 2004, so big change. If people want to kick health issues of moldies

off the board, we have to make that decision. As for the 'thank you's. A lot

of people left and then people said 'oh no, don't go' and then came back and

they were glad because they are experts we are glad to have. That is not

something that usually happens. Lets not take a once in awhile incident and

fall apart over it.

>

> I agree, there are a lot of posts in SB that have nothing to do with housing

problems. 

> There are other for the chemically sensitive. 

ChemicalInjurySupport and GreenCanary are good groups.  MCSrs can ask anything

about health, cleaning, products for your pets, even yard work products, etc. 

>  

> ...Corky

[Guest guest]

I'd hate to think of where we'd be if health issues weren't a part of this

forum. who said we were only supposed to talk about houseing problems? I've

never heard that before.

>

> >

> > I agree, there are a lot of posts in SB that have nothing to do with housing

problems. 

> > There are other for the chemically sensitive. 

ChemicalInjurySupport and GreenCanary are good groups.  MCSrs can ask anything

about health, cleaning, products for your pets, even yard work products, etc. 

> >  

> > ...Corky

>

[Guest guest]

Not all MCS'ers are moldies and visa versa.  It is hard to live............. 

God Bless !!

dragonflymcs

Mayleen

________________________________

From: corky lux <corkylux1@...>

Sent: Fri, August 27, 2010 3:16:47 PM

Subject: Re: [] Re: Leaving/ posting requests

 

I agree, there are a lot of posts in SB that have nothing to do with housing

problems. 

[Guest guest]

There are many people who are just in this group alone due to exposure to WDB

and to ask them to join a separate group for just a few questions about health I

think is unnecessary. If volume stays too high maybe we can consider.

>  

> ..........Most of the off topic posts that go through are related to treatment

of person ill from exposure to WDB so they go through. For example, fleas, not

sick building exactly but if you have become intolerant of chemicals, it's a

problem. It will slow down again. Just some people needing some help!

>

[Guest guest]

Kudos for your voice of reason and support. I depend upon my visits here to

reassure me that there are others in this.  In contrast to more visible

disabilities and illnesses, this is not only invisible but doubted as valid. 

Even with my loving family and friends, whose level of concern and compassion is

unquestioned, I feel a bit guarded in what I share, not wanting to reveal the

extent of my fears or reactions to aspects of life so many take as benign and

part of life.  Going out to dinner?  What is the server is over-scented? 

What

if even if I advise that I'm highly allergic to additives, gluten, salt, and

sugar, the server or chef isn't aware of some preservatives contained within

something labeled as organic or natural.   Those words are deceiving to the

uninitiated and allergic.  I depend upon the kindnesses and wisdom of my " Sick

Buildings " family, and I can't imagine having to be defensive and guarded here

too!  Thanks for the voice of compassion!  sally

________________________________

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

Sent: Fri, August 27, 2010 6:02:02 PM

Subject: Re: [] Re: Leaving/ posting requests

 

I really don't understand all the fuss. I for one think this is a wonderful

group of people that have been a tremendous help and support to me over

MANY years. Even though there have been differences of opinion from time to

time that's all just part of life!!

I don't know what I would have done with out the many helpful people in

this group. We are sick or know someone who is and some are worse off than

others but the support is what is so very important! We need each other

too much and we certainly aren't going to get anywhere if we are divided.

Let's continue to reach out and help each other I think for many it's about

all there is. I have learned a lot of the years and the most important

thing is finding people out there just like me who need each other.

Sue R.

Health issues of moldies have been a part of since I have

been here, in 2004, so big change. If people want to kick health issues of

moldies off the board, we have to make that decision. As for the 'thank

you's. A lot of people left and then people said 'oh no, don't go' and then came

back and they were glad because they are experts we are glad to have. That

is not something that usually happens. Lets not take a once in awhile

incident and fall apart over it.

[Guest guest]

MCS is recognized by the U. S. Department of Justice, U. S. Department of

Health & Human Services, Social Security and others. I think it is unwise

to change the name at this point in time. The definition of MCS can and

should include toxic encephalopathy. I can assure you that the mainstream

is no more open to toxic encephalopathy than it is to MCS. Been there, done

that.

As long as the chemical companies own the pharmaceutical companies, we are

going to have a battle on our hands.

In a message dated 08/28/10 2:30:25 P.M. Central Daylight Time,

writes:

_Re: Leaving/ posting requests _

(/message/80573;_ylc=X3oDMTJwZmlyZTdu\

BF9TAzk3MzU5NzE1BGdycElkAzQ1NDczBGdycHN

wSWQDMTcwNTA2MTU4OQRtc2dJZAM4MDU3MwRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjgzMDI

zODE3)

Posted by: " Jack Thrasher, Ph.D. " _toxicologist1@... _

(mailto:toxicologist1@...?Subject= Re:%20Leaving/%20posting%20requests)

_toxicologist1

_ (toxicologist1)

Sat Aug 28, 2010 10:57 am (PDT)

MCS is not a recognizable illness. The only agency that will recognize the

condition is S.S. One cannot win by claiming to have condition referred to

as MCS. The actual injury is to the brain from toxic exposures involving a

variety of chemicals, including WDB. You are better off with a different

handle. I believe the best way to describe the illness is Toxic

Encephalopathy (T.E.). There web site with considerable amount of information

on

T.E.and you may want to review it.I am the consulting toxicologist to this

group.

_http://national-http://national-http://national-http_

(http://national-toxic-encephalopathy-foundation.org/)

[Guest guest]

MCS is not a recognizable illness. The only agency that will recognize the

condition is S.S. One cannot win by claiming to have condition referred to as

MCS. The actual injury is to the brain from toxic exposures involving a variety

of chemicals, including WDB. You are better off with a different handle. I

believe the best way to describe the illness is Toxic Encephalopathy (T.E.).

There web site with considerable amount of information on T.E.and you may want

to review it.I am the consulting toxicologist to this group.

http://national-toxic-encephalopathy-foundation.org/

We have presented the condition referred to as CIRS (chronic immune response

syndrome) as it relates to WDB. However, this condition relates to several

diseases of the central nervous system: Alzheimer, Parkinson, ALS, M.S., to name

a few. I have listed multiple research papers on chronic inflammation and CNS

diseases on my web site under the heading of Brain Function and Inflammation.

There is also a copy of a new release on treating mice with abnormal behavior

for brain inflammation. What happens is that both systemic innate immune system

and brain immune system (microglia) become chronically activated releasing

cytokines and chemokines. These two systems have feed back loop. The news

release I mentioned shows that treatment of the mouse brain inflammation turns

the mice back to normal behavior. Some psychiatrist are beginning to recognize

these conditions and are treating for inflammation and not using pharmaceuticals

to alter brain function.

The papers that I have listed on my web site are available at no charge via

entrez pubmed and the National Library of Medicine.

If you have further questions, please do not hesitate to ask.

Re: [] Re: Leaving/ posting requests

I had a big exposure to mold now I also have mcs

In a message dated 8/28/2010 8:03:10 A.M. Eastern Daylight Time,

pwr2heal@... writes:

Jack, I'm assuming you're saying that people ill from WDB do not have MCS?

Could you say more about that? I'd like to understand the difference

better.

Thanks much!

[Guest guest]

I would be concerned with the many who will come along who have been stricken

with wdb and it's health effects. I've benefited from advise and patient

guidance from those before me that may have saved my life. The opportunity to

debate and discuss the varied protocols for healing as well as some varied

opinions on the best methods for remediation have been a god-send to me. Over

time I've been able to gain some understanding and at times have been able to

pick up a little slack and respond to some posts from other " newbies " , that I

figure may relieve our hard-working old-timers a wee bit. 

Should we deny those who come after us the same opportunity-- especially when as

Barb points out that there are some here who are totally alone in this. There

are some amazing members here who are indeed physically alone in their efforts

and have incredibly taken their lives in hand and made great progress and have

been wonderful advisers and advocates for many of us here and elsewhere. But

there are those who are so lost and alone-- I'd hate to see them lose the

benefit of what this list offers. 

As far as other lists that refer to mcs issues, they are out there, but the one

or two that I'd been on a few years back had very, very little awareness of

biotoxin illness at all. 

I'd sure vote to keep the health protocols as a part of this great list. We do

always have the option to not reply to any post written.

Thanks for reading this,Sam

There are many people who are just in this group alone due to exposure to

WDB and to ask them to join a separate group for just a few questions about

health I think is unnecessary. If volume stays too high maybe we can consider.

> I agree, there are a lot of posts in SB that have nothing to do with housing

problems.

[Guest guest]

Actually the US dept of education does recognize MCS as a disability.   I know

because I have spoken with several reps at the office of civil rights and I  am

about to file a formal complaint w/ them on services not provided to my daughter

from  her crappy school. 

From: Jack Thrasher, Ph.D. <toxicologist1@...>

Subject: Re: [] Re: Leaving/ posting requests

Date: Saturday, August 28, 2010, 9:32 AM

MCS is not a recognizable illness. The only agency that will recognize

the condition is S.S. One cannot win by claiming to have condition referred to

as MCS. The actual injury is to the brain from toxic exposures involving a

variety of chemicals, including WDB. You are better off with a different

handle. I believe the best way to describe the illness is Toxic Encephalopathy

(T.E.). There web site with considerable amount of information on T.E.and you

may want to review it.I am the consulting toxicologist to this group.

http://national-toxic-encephalopathy-foundation.org/

We have presented the condition referred to as CIRS (chronic immune response

syndrome) as it relates to WDB. However, this condition relates to several

diseases of the central nervous system: Alzheimer, Parkinson, ALS, M.S., to name

a few. I have listed multiple research papers on chronic inflammation and CNS

diseases on my web site under the heading of Brain Function and Inflammation.

There is also a copy of a new release on treating mice with abnormal behavior

for brain inflammation. What happens is that both systemic innate immune system

and brain immune system (microglia) become chronically activated releasing

cytokines and chemokines. These two systems have feed back loop. The news

release I mentioned shows that treatment of the mouse brain inflammation turns

the mice back to normal behavior. Some psychiatrist are beginning to recognize

these conditions and are treating for inflammation and not using pharmaceuticals

to alter brain function.

The papers that I have listed on my web site are available at no charge via

entrez pubmed and the National Library of Medicine.

If you have further questions, please do not hesitate to ask.

[Guest guest]

Health protocols, in my opinion, has to be part of this. I don't have a lot of

resources and have to start with whatever I can do myself. Someone just gave

excellent advice to send a stool sample to Real Time labs--I would have never

known to do that. I went to their web site before and did not see that option.

Your appeal is so well stated, Sam.

On Aug 28, 2010, at 1:56 PM, Sam <yaddayadda53@...> wrote:

I would be concerned with the many who will come along who have been stricken

with wdb and it's health effects. I've benefited from advise and patient

guidance from those before me that may have saved my life. The opportunity to

debate and discuss the varied protocols for healing as well as some varied

opinions on the best methods for remediation have been a god-send to me. Over

time I've been able to gain some understanding and at times have been able to

pick up a little slack and respond to some posts from other " newbies " , that I

figure may relieve our hard-working old-timers a wee bit.

Should we deny those who come after us the same opportunity-- especially when as

Barb points out that there are some here who are totally alone in this. There

are some amazing members here who are indeed physically alone in their efforts

and have incredibly taken their lives in hand and made great progress and have

been wonderful advisers and advocates for many of us here and elsewhere. But

there are those who are so lost and alone-- I'd hate to see them lose the

benefit of what this list offers.

[Guest guest]

a: This is not a compensable recognition. Individuals who go to their

physicians with this complaint are turned away. I highly recommend that they

use a diagnosed condition, e.g. Toxic encephalopathy. We can test and describe

the brain injury, see the research by Dr. Kaye Kilburn.

Re: [] Re: Leaving/ posting requests

Date: Saturday, August 28, 2010, 9:32 AM

MCS is not a recognizable illness. The only agency that will recognize the

condition is S.S. One cannot win by claiming to have condition referred to as

MCS. The actual injury is to the brain from toxic exposures involving a variety

of chemicals, including WDB. You are better off with a different handle. I

believe the best way to describe the illness is Toxic Encephalopathy (T.E.).

There web site with considerable amount of information on T.E.and you may want

to review it.I am the consulting toxicologist to this group.

http://national-toxic-encephalopathy-foundation.org/

We have presented the condition referred to as CIRS (chronic immune response

syndrome) as it relates to WDB. However, this condition relates to several

diseases of the central nervous system: Alzheimer, Parkinson, ALS, M.S., to name

a few. I have listed multiple research papers on chronic inflammation and CNS

diseases on my web site under the heading of Brain Function and Inflammation.

There is also a copy of a new release on treating mice with abnormal behavior

for brain inflammation. What happens is that both systemic innate immune system

and brain immune system (microglia) become chronically activated releasing

cytokines and chemokines. These two systems have feed back loop. The news

release I mentioned shows that treatment of the mouse brain inflammation turns

the mice back to normal behavior. Some psychiatrist are beginning to recognize

these conditions and are treating for inflammation and not using pharmaceuticals

to alter brain function.

The papers that I have listed on my web site are available at no charge via

entrez pubmed and the National Library of Medicine.

If you have further questions, please do not hesitate to ask.

[Guest guest]

Not to mention that there are some problems mote specific to mold exposure, like

fungal sinusitis, that are appropriate to a list about WDBs. The needs of people

with MCS (sorry can't remember Dr Thrasher's term) are not always in concert

with those suffering from mold exposure.

Thank you, Barb, well said.

On Aug 27, 2010, at 7:03 PM, " barb b w " <barb1283@...> wrote:

There are many people who are just in this group alone due to exposure to WDB

and to ask them to join a separate group for just a few questions about health I

think is unnecessary. If volume stays too high maybe we can consider.

[Guest guest]

So does HUD,Courts, VA, US Access Board, and the attached link.  I have paper

on accomodations for the 19th Judicial Court, VA, and several others written by

them.   I think the real problem is the name or acryn MCS as it does not fit

the

illness. IMO.   I am getting lost now and thought after 6 years I had

something

I knew, now I do not.

http://www.mcsrr.org/factsheets/MCSrecogn.pdf

God Bless !!

dragonflymcs

Mayleen

________________________________

From: a Townsend <kmtown2003@...>

Sent: Sat, August 28, 2010 2:57:49 PM

Subject: Re: [] Re: Leaving/ posting requests

 

Actually the US dept of education does recognize MCS as a disability.   I know

because I have spoken with several reps at the office of civil rights and I  am

about to file a formal complaint w/ them on services not provided to my daughter

from  her crappy school. 

Text portions of this message have been removed]

[Guest guest]

Very true Sam., little to no knowledge of biotoxin illness and even sometimes in

dismay over it.  It can get very lonely out here when you as complicated by

both

and you go from one place to another searching for answers and feeling as if you

do not belong anywhere..................I for one do not know an group that

has

a Dr or such on it.   Just wat is complied and gathered years of reading and

personal experience.  So many diseases we can get from WBD , so many why

isolate

some. ............ let just stay together.............................we are

stronger. 

God Bless !!

dragonflymcs

Mayleen

___________________________

From: Sam <yaddayadda53@...>

Sent: Sat, August 28, 2010 2:56:28 PM

Subject: Re: [] Re: Leaving/ posting requests

 

I would be concerned with the many who will come along who have been stricken

with wdb and it's health effects. I've benefited from advise and patient

guidance from those before me that may have saved my life. The opportunity to

debate and discuss the varied protocols for healing

[Guest guest]

So i searched for the Dr and found this brief summary I thought I might share:

 

http://www.mcsbeaconofhope.com/MCS%20BOH/kaye_kilburn.htm

God Bless !!

dragonflymcs

Mayleen

________________________________

From: dragonflymcs <dragonflymcs@...>

Sent: Sat, August 28, 2010 4:38:06 PM

Subject: Re: [] Re: Leaving/ posting requests

 

Very true Sam., little to no knowledge of biotoxin illness and even sometimes in

dismay over it.  It can get very lonely out here when you as complicated by

both

and you go from one place to another searching for answers and feeling as if you

do not belong anywhere..................I for one do not know an group that

has

a Dr or such on it.   Just wat is complied and gathered years of reading and

personal experience.  So many diseases we can get from WBD , so many why

isolate

some. ............ let just stay together.............................we are

stronger. 

God Bless !!

dragonflymcs

Mayleen

[Guest guest]

These recognition have no weight in the court of law nor with the medical

profession. If one wants full recognition of what is behind the illness, then

call a spade a spade. There are no acceptable diagnostic tests that identifies

MCS. However, toxic encephalopathy and/or CIRS can be identified via

appropriate diagnostic tests.

Jack-Dwayne: Thrasher, Ph.D.

Toxicologist/Immunotoxicologist/Fetaltoxicologist

www.drthrasher.org

toxicologist1@...

Off: 916-745-4703

Cell: 575-937-1150

L. Crawley, M.ED., LADC

Trauma Specialist

sandracrawley@...

916-745-4703 - Off

775-309-3994 - Cell

This message and any attachments forwarded with it is to be considered

privileged and confidential. The forwarding or redistribution of this message

(and any attachments) without my prior written consent is strictly prohibited

and may violate privacy laws. Once the intended purpose of this message has been

served, please destroy the original message contents. If you have received this

message in error, please reply immediately to advise the sender of the

miscommunication and then delete the message and any copies you have printed.

Thank you in advance for your compliance.

[Guest guest]

That is very sad indeed.  I understand in order to have a foot to stand on we

have to use another ICD code.   That also explains the condition and can be

tested for.??

God Bless !!

dragonflymcs

Mayleen

________________________________

From: " Jack Thrasher, Ph.D. " <toxicologist1@...>

Sent: Sat, August 28, 2010 8:25:58 PM

Subject: [] Re: Leaving/ posting requests

 

These recognition have no weight in the court of law nor with the medical

profession. If one wants full recognition of what is behind the illness, then

call a spade a spade. There are no acceptable diagnostic tests that identifies

MCS. However, toxic encephalopathy and/or CIRS can be identified via appropriate

diagnostic tests.

Jack-Dwayne: Thrasher, Ph.D.

Toxicologist/Immunotoxicologist/Fetaltoxicologist

www.drthrasher.org

toxicologist1@...

Off: 916-745-4703

Cell: 575-937-1150

L. Crawley, M.ED., LADC

Trauma Specialist

sandracrawley@...

916-745-4703 - Off

775-309-3994 - Cell

This message and any attachments forwarded with it is to be considered

privileged and confidential. The forwarding or redistribution of this message

(and any attachments) without my prior written consent is strictly prohibited

and may violate privacy laws. Once the intended purpose of this message has been

served, please destroy the original message contents. If you have received this

message in error, please reply immediately to advise the sender of the

miscommunication and then delete the message and any copies you have printed.

Thank you in advance for your compliance.

[Guest guest]

Good discussion. I started out with severe uticaria. For months doctors worked

on that issue prendizone, and many meds. Then had cat scan and all sinuses were

infected. Worked on that for months and was improving in next cat scan. But then

the landlord decided to remove wallpaper and paint for a month. Next thing I was

headed for sinus surgery and polyps removed. Then they said we had to move

within six weeks after surgery. Had all molds including stachy.

Tried singular made me hyper. And all asthma meds and Amp B (forget how to

spell in nebulizer. But chronic candida I guess from all antiobiotics, inhalers

cause thrush sometimes, and allergic to candida and all molds. They said I had

Reactive Airways disease, irritant induced asthma, and neruological problems

plus borderline imunosuppressive. I can remember telling the doctor I could

smell too much. lol. They were all helpful but lost insurance. Now just try to

eat healthy and take meds for neurological problem. Moved 8 times. two were

moldy and after the initial first home where I became ill. Other places mostly

had chemical issues. Just my quick info.

[Guest guest]

The polyps tested pos for the funguses including stachy?

Thanks..

Robin

>

> Good discussion. I started out with severe uticaria. For months doctors worked

on that issue prendizone, and many meds. Then had cat scan and all sinuses were

infected. Worked on that for months and was improving in next cat scan. But then

the landlord decided to remove wallpaper and paint for a month. Next thing I was

headed for sinus surgery and polyps removed. Then they said we had to move

within six weeks after surgery. Had all molds including stachy.

>

> Tried singular made me hyper. And all asthma meds and Amp B (forget how to

spell in nebulizer. But chronic candida I guess from all antiobiotics, inhalers

cause thrush sometimes, and allergic to candida and all molds. They said I had

Reactive Airways disease, irritant induced asthma, and neruological problems

plus borderline imunosuppressive. I can remember telling the doctor I could

smell too much. lol. They were all helpful but lost insurance. Now just try to

eat healthy and take meds for neurological problem. Moved 8 times. two were

moldy and after the initial first home where I became ill. Other places mostly

had chemical issues. Just my quick info.

>