Re: question - do many people here live in the kinds of houses in this Business Week article?

August 8, 2007

Live I have only lived in older homes including my grandmothers 3 family that is over 100 years old. I was exposed to tb as a child. All 4 of us kids had a positive tb test and then were sent for xrays. The doctor said it was probably histoplasmosis? and my other 3 siblings don't have sarc.grannylunatic@...

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

August 9, 2007

I've lived mostly in older houses myself. Older homes have had more time to accumulate junk, water damage, etc.And older houses often also have lead paint issues..But my lead levels are very low.. according to blood work I've had done..

If an older house is built badly, or is in bad repair, it can have lots of mold..But plaster/lath construction is not as bad a sheetrock..And that fake composite wood is terrible..I am pretty sure toxinogenic molds are triggers for sarcoidosis.. Nobody seems to want to commit to

that because there are people out there, powerful people, who destroy the careers of doctors who admit that mold causes non-allergic diseases..

(and they also spend a lot of their resources obscuring the fact that allergic/immune system

based diseases can and often do kill)but the statistics and my own experience make me very afraid that moldy situations may be a major cause of sarc..

Live I have only lived in older homes including my grandmothers 3 family that is over 100 years old. I was exposed to tb as a child. All 4 of us kids had a positive tb test and then were sent for xrays. The doctor said it was probably histoplasmosis? and my other 3 siblings don't have sarc.

grannylunatic (AT) yahoo (DOT) com

August 9, 2007

I've lived mostly in older houses myself. Older homes have had more time to accumulate junk, water damage, etc.And older houses often also have lead paint issues..But my lead levels are very low.. according to blood work I've had done..

If an older house is built badly, or is in bad repair, it can have lots of mold..But plaster/lath construction is not as bad a sheetrock..And that fake composite wood is terrible..I am pretty sure toxinogenic molds are triggers for sarcoidosis.. Nobody seems to want to commit to

that because there are people out there, powerful people, who destroy the careers of doctors who admit that mold causes non-allergic diseases..

(and they also spend a lot of their resources obscuring the fact that allergic/immune system

based diseases can and often do kill)but the statistics and my own experience make me very afraid that moldy situations may be a major cause of sarc..

Live I have only lived in older homes including my grandmothers 3 family that is over 100 years old. I was exposed to tb as a child. All 4 of us kids had a positive tb test and then were sent for xrays. The doctor said it was probably histoplasmosis? and my other 3 siblings don't have sarc.

grannylunatic (AT) yahoo (DOT) com

August 9, 2007

I agree with Tracie on this; at this time we don't know if molds cause sarc. From personal experience, I certainly think that we should all avoid mold exposure. Years ago the clinic I worked in had some old radiator-style heaters in it, despite the fact that the building we were in (a hospital) had central heat. During the 4 or 5 years we were in that setting, probably 15+ people worked there, for varying periods of time. One office housed our social worker and 2 nurse-practitioners. , the social worker, had severe asthma since childhood. Her desk was right next to the radiator. died of an asthma attack at 46, in the middle of the night at home. Her daughter called 911, but died before they arrived.

About a year later, the hospital renovated another area of the hospital for the clinic & changed the old clinic site into administrative offices. They took out the radiators and found that all of them were full of nasty-looking black mold, and the one in 's office was the worst. We all (her friends and co-workers) believe that being exposed to that probably worsened her asthma & possibly contributed to her early death. was not only a wonderful social worker, but a wise & compassionate friend. Her little corner of that office was like a sanctuary to all of us. So nearly every worker in that clinic spent a lot of time by that radiator, talking to . Yet I'm the only one with sarc & it's been about 11 years since we moved out of that setting. So did the mold I probably breathed in while talking to cause my sarc? Who knows? It might have triggered the autoimmune response in me. But then again, I've been exposed to lots of toxins in my life.

I've read numerous articles about buildings with toxic mold & illnesses associated with it, but I've not seen sarcoidosis as a related illness. When I first started with the systemic symptoms (6 years after a hilar lymph node bx showed sarc), I checked into everything I (and my friends & family) could think of. I bought a CO detector, I had my house checked for mold, especially the lower level, because at that time I lived in a trilevel home. I don't know if I'll ever know for sure what caused or triggered my sarc.

As for the houses you mentioned, I agree with you that safe construction & maintenance practices should be done, not necessarily just to prevent sarcoidosis, but for all the other health concerns involved. Along with the issues you have raised, the public needs to be aware of another housing hazard. Here in the Midwest, at least in Indiana, the number of meth labs has exploded, and only recently have authorities learned that houses that formerly contained meth labs are also toxic. Many people have bought houses in "nice" neighborhoods, and only learned after family members became sick that the house had been used for meth production. Once this information becomes public, they can't sell the houses. So they are stuck paying for a house they can't live in or sell.

There are many, many health & safety issues involved in housing. Unfortunately, I think most public officials & politicians don't see this as a priority issue.

Since this is an area that you are passionate & knowledgeable about, you might consider organizing all of your data & approaching your local & state congressional representatives with a short presentation & hopefully you can find someone willing to take on this issue as a project. Even if you can meet with an aide; most representative have a health aide. I don't know where you live, but I would also urge you to approach the features editor of a local newspaper & try to get an article published on the issue. Again, you need to have your research & data organized & presented concisely. But if you could get an article out, then other interested people would contact you & provide more manpower & ideas to tackle the issue.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Now you can see trouble…before he arrives

August 9, 2007

I agree with Tracie on this; at this time we don't know if molds cause sarc. From personal experience, I certainly think that we should all avoid mold exposure. Years ago the clinic I worked in had some old radiator-style heaters in it, despite the fact that the building we were in (a hospital) had central heat. During the 4 or 5 years we were in that setting, probably 15+ people worked there, for varying periods of time. One office housed our social worker and 2 nurse-practitioners. , the social worker, had severe asthma since childhood. Her desk was right next to the radiator. died of an asthma attack at 46, in the middle of the night at home. Her daughter called 911, but died before they arrived.

About a year later, the hospital renovated another area of the hospital for the clinic & changed the old clinic site into administrative offices. They took out the radiators and found that all of them were full of nasty-looking black mold, and the one in 's office was the worst. We all (her friends and co-workers) believe that being exposed to that probably worsened her asthma & possibly contributed to her early death. was not only a wonderful social worker, but a wise & compassionate friend. Her little corner of that office was like a sanctuary to all of us. So nearly every worker in that clinic spent a lot of time by that radiator, talking to . Yet I'm the only one with sarc & it's been about 11 years since we moved out of that setting. So did the mold I probably breathed in while talking to cause my sarc? Who knows? It might have triggered the autoimmune response in me. But then again, I've been exposed to lots of toxins in my life.

I've read numerous articles about buildings with toxic mold & illnesses associated with it, but I've not seen sarcoidosis as a related illness. When I first started with the systemic symptoms (6 years after a hilar lymph node bx showed sarc), I checked into everything I (and my friends & family) could think of. I bought a CO detector, I had my house checked for mold, especially the lower level, because at that time I lived in a trilevel home. I don't know if I'll ever know for sure what caused or triggered my sarc.

As for the houses you mentioned, I agree with you that safe construction & maintenance practices should be done, not necessarily just to prevent sarcoidosis, but for all the other health concerns involved. Along with the issues you have raised, the public needs to be aware of another housing hazard. Here in the Midwest, at least in Indiana, the number of meth labs has exploded, and only recently have authorities learned that houses that formerly contained meth labs are also toxic. Many people have bought houses in "nice" neighborhoods, and only learned after family members became sick that the house had been used for meth production. Once this information becomes public, they can't sell the houses. So they are stuck paying for a house they can't live in or sell.

There are many, many health & safety issues involved in housing. Unfortunately, I think most public officials & politicians don't see this as a priority issue.

Since this is an area that you are passionate & knowledgeable about, you might consider organizing all of your data & approaching your local & state congressional representatives with a short presentation & hopefully you can find someone willing to take on this issue as a project. Even if you can meet with an aide; most representative have a health aide. I don't know where you live, but I would also urge you to approach the features editor of a local newspaper & try to get an article published on the issue. Again, you need to have your research & data organized & presented concisely. But if you could get an article out, then other interested people would contact you & provide more manpower & ideas to tackle the issue.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Now you can see trouble…before he arrives

August 9, 2007

Hi, There is no proof about molds causing Sarc, but it sure keeps coming up as a common denominator with the people I've talked to that has Sarc. I had mold in my home as well. RickRose wrote: I agree with Tracie on this; at this time we don't know if molds cause sarc. From personal experience, I certainly think that we should all avoid mold exposure. Years ago the clinic I worked in had some old radiator-style

heaters in it, despite the fact that the building we were in (a hospital) had central heat. During the 4 or 5 years we were in that setting, probably 15+ people worked there, for varying periods of time. One office housed our social worker and 2 nurse-practitioners. , the social worker, had severe asthma since childhood. Her desk was right next to the radiator. died of an asthma attack at 46, in the middle of the night at home. Her daughter called 911, but died before they arrived. About a year later, the hospital renovated another area of the hospital for the clinic & changed the old clinic site into administrative offices. They took out the radiators and found that all of them were full of nasty-looking black mold, and the one in 's office was the worst. We all (her friends and co-workers) believe that being exposed to that probably worsened her asthma &

possibly contributed to her early death. was not only a wonderful social worker, but a wise & compassionate friend. Her little corner of that office was like a sanctuary to all of us. So nearly every worker in that clinic spent a lot of time by that radiator, talking to . Yet I'm the only one with sarc & it's been about 11 years since we moved out of that setting. So did the mold I probably breathed in while talking to cause my sarc? Who knows? It might have triggered the autoimmune response in me. But then again, I've been exposed to lots of toxins in my life. I've read numerous articles about buildings with toxic mold & illnesses associated with it, but I've not seen sarcoidosis as a related illness. When I first started with the systemic symptoms (6 years after a hilar lymph node bx showed sarc), I checked into everything I (and my friends &

family) could think of. I bought a CO detector, I had my house checked for mold, especially the lower level, because at that time I lived in a trilevel home. I don't know if I'll ever know for sure what caused or triggered my sarc. As for the houses you mentioned, I agree with you that safe construction & maintenance practices should be done, not necessarily just to prevent sarcoidosis, but for all the other health concerns involved. Along with the issues you have raised, the public needs to be aware of another housing hazard. Here in the Midwest, at least in Indiana, the number of meth labs has exploded, and only recently have authorities learned that houses that formerly contained meth labs are also toxic. Many people have bought houses in "nice" neighborhoods, and only learned after family members became sick that the house had been used for meth production. Once this information becomes public,

they can't sell the houses. So they are stuck paying for a house they can't live in or sell. There are many, many health & safety issues involved in housing. Unfortunately, I think most public officials & politicians don't see this as a priority issue. Since this is an area that you are passionate & knowledgeable about, you might consider organizing all of your data & approaching your local & state congressional representatives with a short presentation & hopefully you can find someone willing to take on this issue as a project. Even if you can meet with an aide; most representative have a health aide. I don't know where you live, but I would also urge you to approach the features editor of a local newspaper & try to get an article published on the issue. Again, you need to have your research & data organized & presented concisely.

But if you could get an article out, then other interested people would contact you & provide more manpower & ideas to tackle the issue. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Now you can see trouble…before he arrives

Pinpoint customers who are looking for what you sell.

August 9, 2007

Hi, There is no proof about molds causing Sarc, but it sure keeps coming up as a common denominator with the people I've talked to that has Sarc. I had mold in my home as well. RickRose wrote: I agree with Tracie on this; at this time we don't know if molds cause sarc. From personal experience, I certainly think that we should all avoid mold exposure. Years ago the clinic I worked in had some old radiator-style

heaters in it, despite the fact that the building we were in (a hospital) had central heat. During the 4 or 5 years we were in that setting, probably 15+ people worked there, for varying periods of time. One office housed our social worker and 2 nurse-practitioners. , the social worker, had severe asthma since childhood. Her desk was right next to the radiator. died of an asthma attack at 46, in the middle of the night at home. Her daughter called 911, but died before they arrived. About a year later, the hospital renovated another area of the hospital for the clinic & changed the old clinic site into administrative offices. They took out the radiators and found that all of them were full of nasty-looking black mold, and the one in 's office was the worst. We all (her friends and co-workers) believe that being exposed to that probably worsened her asthma &

possibly contributed to her early death. was not only a wonderful social worker, but a wise & compassionate friend. Her little corner of that office was like a sanctuary to all of us. So nearly every worker in that clinic spent a lot of time by that radiator, talking to . Yet I'm the only one with sarc & it's been about 11 years since we moved out of that setting. So did the mold I probably breathed in while talking to cause my sarc? Who knows? It might have triggered the autoimmune response in me. But then again, I've been exposed to lots of toxins in my life. I've read numerous articles about buildings with toxic mold & illnesses associated with it, but I've not seen sarcoidosis as a related illness. When I first started with the systemic symptoms (6 years after a hilar lymph node bx showed sarc), I checked into everything I (and my friends &

family) could think of. I bought a CO detector, I had my house checked for mold, especially the lower level, because at that time I lived in a trilevel home. I don't know if I'll ever know for sure what caused or triggered my sarc. As for the houses you mentioned, I agree with you that safe construction & maintenance practices should be done, not necessarily just to prevent sarcoidosis, but for all the other health concerns involved. Along with the issues you have raised, the public needs to be aware of another housing hazard. Here in the Midwest, at least in Indiana, the number of meth labs has exploded, and only recently have authorities learned that houses that formerly contained meth labs are also toxic. Many people have bought houses in "nice" neighborhoods, and only learned after family members became sick that the house had been used for meth production. Once this information becomes public,

they can't sell the houses. So they are stuck paying for a house they can't live in or sell. There are many, many health & safety issues involved in housing. Unfortunately, I think most public officials & politicians don't see this as a priority issue. Since this is an area that you are passionate & knowledgeable about, you might consider organizing all of your data & approaching your local & state congressional representatives with a short presentation & hopefully you can find someone willing to take on this issue as a project. Even if you can meet with an aide; most representative have a health aide. I don't know where you live, but I would also urge you to approach the features editor of a local newspaper & try to get an article published on the issue. Again, you need to have your research & data organized & presented concisely.

But if you could get an article out, then other interested people would contact you & provide more manpower & ideas to tackle the issue. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Now you can see trouble…before he arrives

Pinpoint customers who are looking for what you sell.

August 9, 2007

Thank all of you for listening to me and taking this seriously. The

more I read about the biochemistry of sarcoidosis, the more I think

the connection is a STRONG one.

(I'd be more than glad to share what I think so far with anyone with a

technical bent.. email me off list)

I am also trying to find material on small fiber neuropathy and

neurosarcoidosis.. does anyone know of any good technical resources on

that?

Fatigue is what is killing me right now.. until I get my fatigue

addressed, I can't work.. so I need to find out more about this.. how

it works, how to diagnose it, and especially how to address it.. treat

it..

I'm not a doctor but I do have a technical background and understand

scientific publications..so thats what I am looking for, most

specifically..

>

> Hi,

> There is no proof about molds causing Sarc, but it sure keeps coming up as a

common denominator with the people I've talked to that has Sarc. I had mold in

my home as well.

> Rick

>

August 9, 2007

Thank all of you for listening to me and taking this seriously. The

more I read about the biochemistry of sarcoidosis, the more I think

the connection is a STRONG one.

(I'd be more than glad to share what I think so far with anyone with a

technical bent.. email me off list)

I am also trying to find material on small fiber neuropathy and

neurosarcoidosis.. does anyone know of any good technical resources on

that?

Fatigue is what is killing me right now.. until I get my fatigue

addressed, I can't work.. so I need to find out more about this.. how

it works, how to diagnose it, and especially how to address it.. treat

it..

I'm not a doctor but I do have a technical background and understand

scientific publications..so thats what I am looking for, most

specifically..

>

> Hi,

> There is no proof about molds causing Sarc, but it sure keeps coming up as a

common denominator with the people I've talked to that has Sarc. I had mold in

my home as well.

> Rick

>

August 9, 2007

Hi. In answer to question #1 re: small fiber neuropathy info, there are a number of good sites that address this. Probably the simplest is to just type "small fiber neuropathy" in your search engine. You'll get some fluff & off-the-wall stuff, but s Hopkins, Cleveland Clinic & others provide good info. I know there is some research going on in The Netherlands.

For #2, the fatigue: don't I wish I had the answers. I started with the fatigue on 11/1/2000. At first I thought I had the flu or something, because I also had chills & fever. The fever resolved after a couple of days, but the fatigue just continued. I had testing for mono, lyme disease, thyroid, heck, I don't remember, but just about anything. My PCP told me there was nothing wrong with me that an hour on the treadmill wouldn't fix! I didn't have the energy to smack him or even make a wisecrack. I lost about 35# in 3 months, because I was just too tired to eat. After several months I had developed tremors & balance problems & was seen by a neurologist, who immediately suspected I had NS. He tried me on Provigil, two different dosage regimens, with no improvement at all. I took both Adderall & Ritalin for adult ADD. The Ritaline basically kept me awake for most of the day, then I collapsed. The GOOD NEWS is that I started Focalin about 10 days ago, for fatigue & memory loss. The sarc guru that I see in Cincinnati once a year, Dr. Bob Baughman, suggested it when I saw him in June. It's like a cousin of Ritalin, but with less swings than the Ritalin. I haven't noticed an improvement in memory yet, but it's definitely helping increase energy. I've been getting through every day without taking a nap, which is a huge change for me.

So that's my story, and I'm stickin' to it, if I can remember it!

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: question - do many people here live in the kinds of houses in this Business Week article?Date: Thu, 9 Aug 2007 19:26:44 -0400

Thank all of you for listening to me and taking this seriously. Themore I read about the biochemistry of sarcoidosis, the more I thinkthe connection is a STRONG one.(I'd be more than glad to share what I think so far with anyone with atechnical bent.. email me off list)I am also trying to find material on small fiber neuropathy andneurosarcoidosis.. does anyone know of any good technical resources onthat?Fatigue is what is killing me right now.. until I get my fatigueaddressed, I can't work.. so I need to find out more about this.. howit works, how to diagnose it, and especially how to address it.. treatit..I'm not a doctor but I do have a technical background and understandscientific publications..so thats what I am looking for, mostspecifically..>>>>>>>> Hi,> There is no proof about molds causing Sarc, but it sure keeps coming up as a common denominator with the people I've talked to that has Sarc. I had mold in my home as well.> Rick>>>

Now you can see trouble…before he arrives

August 9, 2007

Hi. In answer to question #1 re: small fiber neuropathy info, there are a number of good sites that address this. Probably the simplest is to just type "small fiber neuropathy" in your search engine. You'll get some fluff & off-the-wall stuff, but s Hopkins, Cleveland Clinic & others provide good info. I know there is some research going on in The Netherlands.

For #2, the fatigue: don't I wish I had the answers. I started with the fatigue on 11/1/2000. At first I thought I had the flu or something, because I also had chills & fever. The fever resolved after a couple of days, but the fatigue just continued. I had testing for mono, lyme disease, thyroid, heck, I don't remember, but just about anything. My PCP told me there was nothing wrong with me that an hour on the treadmill wouldn't fix! I didn't have the energy to smack him or even make a wisecrack. I lost about 35# in 3 months, because I was just too tired to eat. After several months I had developed tremors & balance problems & was seen by a neurologist, who immediately suspected I had NS. He tried me on Provigil, two different dosage regimens, with no improvement at all. I took both Adderall & Ritalin for adult ADD. The Ritaline basically kept me awake for most of the day, then I collapsed. The GOOD NEWS is that I started Focalin about 10 days ago, for fatigue & memory loss. The sarc guru that I see in Cincinnati once a year, Dr. Bob Baughman, suggested it when I saw him in June. It's like a cousin of Ritalin, but with less swings than the Ritalin. I haven't noticed an improvement in memory yet, but it's definitely helping increase energy. I've been getting through every day without taking a nap, which is a huge change for me.

So that's my story, and I'm stickin' to it, if I can remember it!

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: question - do many people here live in the kinds of houses in this Business Week article?Date: Thu, 9 Aug 2007 19:26:44 -0400

Thank all of you for listening to me and taking this seriously. Themore I read about the biochemistry of sarcoidosis, the more I thinkthe connection is a STRONG one.(I'd be more than glad to share what I think so far with anyone with atechnical bent.. email me off list)I am also trying to find material on small fiber neuropathy andneurosarcoidosis.. does anyone know of any good technical resources onthat?Fatigue is what is killing me right now.. until I get my fatigueaddressed, I can't work.. so I need to find out more about this.. howit works, how to diagnose it, and especially how to address it.. treatit..I'm not a doctor but I do have a technical background and understandscientific publications..so thats what I am looking for, mostspecifically..>>>>>>>> Hi,> There is no proof about molds causing Sarc, but it sure keeps coming up as a common denominator with the people I've talked to that has Sarc. I had mold in my home as well.> Rick>>>

Now you can see trouble…before he arrives

August 10, 2007

Live I also forgot to mention the doctor said Histoplasmosis was pretty common in the Ohio River Valley.Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

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August 10, 2007

Rose Renting a house or apartment that was a meth lab is one of my biggest fears. I saw a pregnant woman and her other kids have to leave their belongings in their house while HazMat was trying to clean up over in the Cincy OH area. It was terrifying.Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Luggage? GPS? Comic books?

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August 10, 2007

Just to let you know that, yes, Histoplasmosis IS most found in

IL, IN, and Ohio......and surrounding areas. I had it last summer

and nearly died.........the family was called in 4 times. My specialists

knew what it was because they had treated several cases of it in

Indianapolis and surrounding areas, so I was in good hands, but

there were a few deaths with it.......one in my area was just 31......

it is an awful illness and I have to take medicine for it the rest of my