Re: Racial stats and sarc theory

[Guest guest]

You know, I don't know that I believe so much of the stats on it being a disease that prefers Blacks, Scandinavians, or even Gulf War Vets or those that were in the towers on 9/11. There is a high incidence in GWV and the towers-- so inhaling all that smoke and dust has more to do with it than race--in my opinion.

I am Norwegian and ish and English and probably some Navajo (very small amount) but who knows.

I lean towards the enviromental and genetic predisposition towards auto-immune diseases (diabetes, arthritis, etc) and a stress or illness factor that turned on our immune system.

One study I just read points more and more towards it being a Pro??bacteria similar to tb. It showed that there was a smaller amount of mycobacterial infection in sarc where mycobacterial is prevalent in TB--so they are using the term--"rouge" tb.

But they specifically said sarc does not present often with mycobacteria. i'll see if I come across it again. I know I saved it--

When you think about it-- our history as far as working in the agricultural businesses-- who harvested the fields. Blacks and Mexicans. Who grew the crops-- whites. Who does the fertilization, the pesticide applications, etc-- it would be divided by race-- but you still have more of the colored population in the trenches. So they would have had higher incidence of direct overhead, on hands application--so that may very well be the influencing factors.

Dietary consumption leads these same folks to high incidence of diabetes and arthritis- fried foods, high sugar diets, and high fat diets. We know now that high sugar and high fat consumption lead to diabetes and arthritis-- and I know that my family going back -- all we ate was low cost foods, bathed in that bacon grease. My grandparents came from the deep south-- and poor areas at that- so they would fall into that category although they are white.

For those of us that chose careers that put us into teaching, medicine at any level, we ended up with contact of social groups that had higher incindence of what we now call "3rd world" company-- and the variant diseases that come with those jobs.

Don't get me wrong- I'm not stating this as any racial degradation against anyone-- that's not what I'm talking about-- I'm saying lets forget the color of skin and look at the enviromental factors- that is going to be the key.

So that's my sandbox-- and I've been wrong at least 2x in my life...

Hugs,

Tracie

Re: Tracie update

Tracie,

I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!!

Cathytracie feldhaus wrote:

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension- - and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms- - and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having

asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

[Guest guest]

You know, I don't know that I believe so much of the stats on it being a disease that prefers Blacks, Scandinavians, or even Gulf War Vets or those that were in the towers on 9/11. There is a high incidence in GWV and the towers-- so inhaling all that smoke and dust has more to do with it than race--in my opinion.

I am Norwegian and ish and English and probably some Navajo (very small amount) but who knows.

I lean towards the enviromental and genetic predisposition towards auto-immune diseases (diabetes, arthritis, etc) and a stress or illness factor that turned on our immune system.

One study I just read points more and more towards it being a Pro??bacteria similar to tb. It showed that there was a smaller amount of mycobacterial infection in sarc where mycobacterial is prevalent in TB--so they are using the term--"rouge" tb.

But they specifically said sarc does not present often with mycobacteria. i'll see if I come across it again. I know I saved it--

When you think about it-- our history as far as working in the agricultural businesses-- who harvested the fields. Blacks and Mexicans. Who grew the crops-- whites. Who does the fertilization, the pesticide applications, etc-- it would be divided by race-- but you still have more of the colored population in the trenches. So they would have had higher incidence of direct overhead, on hands application--so that may very well be the influencing factors.

Dietary consumption leads these same folks to high incidence of diabetes and arthritis- fried foods, high sugar diets, and high fat diets. We know now that high sugar and high fat consumption lead to diabetes and arthritis-- and I know that my family going back -- all we ate was low cost foods, bathed in that bacon grease. My grandparents came from the deep south-- and poor areas at that- so they would fall into that category although they are white.

For those of us that chose careers that put us into teaching, medicine at any level, we ended up with contact of social groups that had higher incindence of what we now call "3rd world" company-- and the variant diseases that come with those jobs.

Don't get me wrong- I'm not stating this as any racial degradation against anyone-- that's not what I'm talking about-- I'm saying lets forget the color of skin and look at the enviromental factors- that is going to be the key.

So that's my sandbox-- and I've been wrong at least 2x in my life...

Hugs,

Tracie

Re: Tracie update

Tracie,

I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!!

Cathytracie feldhaus wrote:

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension- - and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms- - and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having

asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

[Guest guest]

Hi Tracie, I think most of the cases related to 9/11 are Pulmonary Sarc, not NeuroSarc. I live near NYC and know many people (firemen, police & veterinarians) who were on the scene, some of them have PulmonarySarc not to mention other lung related problems. When I was first diagnosed many doctors told me that I had a very rare form of Sarc and I didn't fit the profile of not being black or Scandinavian. Guess they were reading what you did. But the first thing all my doctors asked was "were you at the 9/11 site"? At this point I don't need to know how I got it, but it might lead to figuring out how to get rid of it. regards, Ricktracie feldhaus wrote: You know, I don't know that I believe so much of the stats on it being a disease that prefers Blacks, Scandinavians, or even Gulf War Vets or those that were in the towers on 9/11. There is a high incidence in GWV and the towers-- so inhaling all that smoke and dust has more to do with it than race--in my opinion. I am Norwegian and ish and English and probably some Navajo (very small amount) but who knows. I lean towards the enviromental and genetic predisposition towards auto-immune diseases (diabetes, arthritis, etc) and a stress or illness factor that turned on our immune system. One study I just read

points more and more towards it being a Pro??bacteria similar to tb. It showed that there was a smaller amount of mycobacterial infection in sarc where mycobacterial is prevalent in TB--so they are using the term--"rouge" tb. But they specifically said sarc does not present often with mycobacteria. i'll see if I come across it again. I know I saved it-- When you think about it-- our history as far as working in the agricultural businesses-- who harvested the fields. Blacks and Mexicans. Who grew the crops-- whites. Who does the fertilization, the pesticide applications, etc-- it would be divided by race-- but you still have more of the colored population in the trenches. So they would have had higher incidence of direct overhead, on hands application--so that may very well be the influencing factors. Dietary consumption leads these same folks to high incidence of diabetes and

arthritis- fried foods, high sugar diets, and high fat diets. We know now that high sugar and high fat consumption lead to diabetes and arthritis-- and I know that my family going back -- all we ate was low cost foods, bathed in that bacon grease. My grandparents came from the deep south-- and poor areas at that- so they would fall into that category although they are white. For those of us that chose careers that put us into teaching, medicine at any level, we ended up with contact of social groups that had higher incindence of what we now call "3rd world" company-- and the variant diseases that come with those jobs. Don't get me wrong- I'm not stating this as any racial degradation against anyone-- that's not what I'm talking about-- I'm saying lets forget the color of skin and look at the enviromental factors- that is going to be the key. So that's my sandbox-- and I've

been wrong at least 2x in my life... Hugs, Tracie Re: Tracie update Tracie, I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!! Cathytracie feldhaus

<tiodaat2001 (AT) yahoo (DOT) com> wrote: Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension- - and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms- - and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under

control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS

Co-owner/moderator

between 0000-00-00 and 9999-99-99

[Guest guest]

Hi Tracie, I think most of the cases related to 9/11 are Pulmonary Sarc, not NeuroSarc. I live near NYC and know many people (firemen, police & veterinarians) who were on the scene, some of them have PulmonarySarc not to mention other lung related problems. When I was first diagnosed many doctors told me that I had a very rare form of Sarc and I didn't fit the profile of not being black or Scandinavian. Guess they were reading what you did. But the first thing all my doctors asked was "were you at the 9/11 site"? At this point I don't need to know how I got it, but it might lead to figuring out how to get rid of it. regards, Ricktracie feldhaus wrote: You know, I don't know that I believe so much of the stats on it being a disease that prefers Blacks, Scandinavians, or even Gulf War Vets or those that were in the towers on 9/11. There is a high incidence in GWV and the towers-- so inhaling all that smoke and dust has more to do with it than race--in my opinion. I am Norwegian and ish and English and probably some Navajo (very small amount) but who knows. I lean towards the enviromental and genetic predisposition towards auto-immune diseases (diabetes, arthritis, etc) and a stress or illness factor that turned on our immune system. One study I just read

points more and more towards it being a Pro??bacteria similar to tb. It showed that there was a smaller amount of mycobacterial infection in sarc where mycobacterial is prevalent in TB--so they are using the term--"rouge" tb. But they specifically said sarc does not present often with mycobacteria. i'll see if I come across it again. I know I saved it-- When you think about it-- our history as far as working in the agricultural businesses-- who harvested the fields. Blacks and Mexicans. Who grew the crops-- whites. Who does the fertilization, the pesticide applications, etc-- it would be divided by race-- but you still have more of the colored population in the trenches. So they would have had higher incidence of direct overhead, on hands application--so that may very well be the influencing factors. Dietary consumption leads these same folks to high incidence of diabetes and

arthritis- fried foods, high sugar diets, and high fat diets. We know now that high sugar and high fat consumption lead to diabetes and arthritis-- and I know that my family going back -- all we ate was low cost foods, bathed in that bacon grease. My grandparents came from the deep south-- and poor areas at that- so they would fall into that category although they are white. For those of us that chose careers that put us into teaching, medicine at any level, we ended up with contact of social groups that had higher incindence of what we now call "3rd world" company-- and the variant diseases that come with those jobs. Don't get me wrong- I'm not stating this as any racial degradation against anyone-- that's not what I'm talking about-- I'm saying lets forget the color of skin and look at the enviromental factors- that is going to be the key. So that's my sandbox-- and I've

been wrong at least 2x in my life... Hugs, Tracie Re: Tracie update Tracie, I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!! Cathytracie feldhaus

<tiodaat2001 (AT) yahoo (DOT) com> wrote: Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension- - and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms- - and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under

control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS

Co-owner/moderator

between 0000-00-00 and 9999-99-99

[Guest guest]

Rick, for me, my sarc started as pulmonary, and optical. From there it became fully systemic, with neuro involvement. What is rare is those of you that have only neuro without any other involvement. Yeah, it is sad that those wonderful men and women in the towers ended up with this disease of any form. But it sure makes you think about what the base trigger may be.

I can't imagine the dust, smoke, ashes, toxins and all that they were exposed to-- and probably still are. I just pray that it doesn't progress to multi-system sarc.

Like you, I truly believe that the way they'll figure out the how we got this, is more important to finding the cure. I guess what I'm saying is that the old stats of this being a colored persons disease, is one that seems to be ending up outdated. What we need to figure out is what common things we have all been exposed to.

Sincerely,

Tracie

NS Co-owner/moderator

Re: Tracie update

Tracie,

I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!!

Cathytracie feldhaus <tiodaat2001@ yahoo.com> wrote:

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension- - and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms- - and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having

asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

between 0000-00-00 and 9999-99-99

[Guest guest]

Rick, for me, my sarc started as pulmonary, and optical. From there it became fully systemic, with neuro involvement. What is rare is those of you that have only neuro without any other involvement. Yeah, it is sad that those wonderful men and women in the towers ended up with this disease of any form. But it sure makes you think about what the base trigger may be.

I can't imagine the dust, smoke, ashes, toxins and all that they were exposed to-- and probably still are. I just pray that it doesn't progress to multi-system sarc.

Like you, I truly believe that the way they'll figure out the how we got this, is more important to finding the cure. I guess what I'm saying is that the old stats of this being a colored persons disease, is one that seems to be ending up outdated. What we need to figure out is what common things we have all been exposed to.

Sincerely,

Tracie

NS Co-owner/moderator

Re: Tracie update

Tracie,

I am so sorry it was so hard. I wonder sometimes if there is a doctor out there that really can handle sarc. Was it Marla that said sarc is common (like MS is common here) in Scandanavia or something? Maybe the doctors there get it and we could talk one into coming here???? Yeah right! Hang in there!! You are in my prayers!!!

Cathytracie feldhaus <tiodaat2001@ yahoo.com> wrote:

Well, this has been a week. The neurologist has decided since there are no granulomas showing in my brain that I don't have NS. I do have muscle and nerve involvement, but it's not in my brain. I think I should be elated-- but I know he's out to lunch.As for today's cardiology appt-- I do have pulmonary hypertension- - and need to see the pulmonologist. I do have an aortic valve that is sticking-- but no signs of infarct (heart attack) and no conduction problems at this point. So that is good-- however, we know that both the valve issues and the PH is caused by the sarc.-- He doesn't. So back in a year for ongoing echocardiograms- - and hopefully I don't have any emergency before then. I have to admit that it is somewhat of a relief-- oh-- and since my thyroid is seriously whacked out-- if we get that under control-- these other issues may mellow out also. I'm tired of being the "birdie" in the MD's game of badmitton-- and having

asked for a referal to an Endocrinologist over 17 months ago-- I do believe I'll be losing some of my "cool" when I do see the GP in the next week or so. Last time I saw her-- she told me "you must be a very very pactient person-- well, I'm no longer patient. I'm tired, I hurt, I've been fighting some serious depression and weight gain this whole time-- and I'm now pissed. How many letters from the other docs does it take to get me into someone that can help with the endocrine involvement. I so hate having to fight for any progress-- but I know if I don't-- it sure as hell won't come from any of them.Time to throw tomatoes off the back deck, hmmmm, think I can hit the neighbors house?????Darlene and gang-- I'm not really back yet but will be checking in over the next few days-- I'm tired.Sincerely,TracieNS Co-owner/moderator

between 0000-00-00 and 9999-99-99