Re: [SPAM]Re: Genetics, Enviromental, TB

[Guest guest]

Jackie,

I don't know that it is because we worked in medicine. I was a medical administrator for 17 yrs, and when I got sick, I was managing a small practice for an Internal Medicine MD that was treating the missionaires that where here from Israel and Egypt and Lebanon. It was his turn to handle them that year, and they definately had stuff we'd never seen. We're only talking about a handful of people that whole year, but they did present with "viruses" he'd never seen. This was actually a very small office, only 4 employees, so we did everything from back office to billing to blood draws-- so it didn't matter what your "title" was-- you got exposed to all of it.

What they know from the ACCESS study (the one that I was part of along with the Infliximab -Remicade- clinical trial) is that there seems to be a genetic predisposition for auto-immune disease that was common throughout all of us.

Autoimmune diseases include Rheumatoid Arthritis, Diabetes, MS, Lupus and more. So you could be from (and probably everyone is) a candidate for AI disease. My mom, grandparents on both sides of the family are all diabetics. They also all have heart disease and arthritis issues.

Also from the ACCESS study, they have found a common link for pesticide exposure. I grew up in No. California in the middle of the rice, almond and walnut orchards. Prime area for pesticide, fertilizer, insecticide use. If it wasn't being applied by tractors spraying in the fields, it was being applied by cropdusters flying overhead. BAck in the 60's and 70's-- they also allowed the rice fields to be burnt after harvest every year-- today they limit how much they can burn-- but the air quality in the valley is crap! I know going down the hill we only see across the Sacramento Valley probably less than a month out of the year (on clear days you can see all the way across to the Coastal Range-- a 100 mile drive) and it's few and far between now. and I both worked for a pest control company-he was a technician and I was the office manager (I got to tell him where to go--daily!) and we brought the "bug"

truck home nightly.

The next job I had was working for an Ophthalmologist, managing a multi-million dollar practice, and because the doc was a major player in the SDA church here in town-- they did take turns helping and hosting the missionaires. I spent 8 yrs there. Next I went to the Internist, then to a huge group office that all the local docs formed as a group. That exposed me to 19 different docs and offices... I ended up working for an ambulance company, and we transported a huge number of indigents with diseases like ours. We did the "non-emergent" transports-- and though I was generally in the office it was still exposure to some weird stuff.

After that I ended up working for the phone company-- and that is where I relapsed into this-- and that was a job where stress was an extreme issue. Crazy part was, the office we were in had been a out-patient care center for the local hospital-- and they had some kind of huge problem with bacteria in the cooling system. Many of the employees came down with weird respiratory shit-- and no one could say what it was. They eventually had to tear out all the heating and cooling ducts and replace them.

So I had a genetic predisposition, an enviromental insult to my immune system in the way of pesticides and rogue illness-- and here I am.

I am the only one in my family to have sarcoidosis, although I have a cousin in Woodland, CA that has MS. So how knows.

The ACCESS study showed this, a fair number of lung sarcoidians with a bacterial infection in the lungs (not mycobacterial) and genetics, and enviroment. But it still is not specific and it doesn't account for every single participant.

It also showed that TB patients had the mycobacteria-- although sarc did not. So the thought from the LA docs was that maybe the bacteria we had in common was similar to a rogue TB-- something that had mutated from "common" TB.

I believe I posted a link to this study-- you can search for it in the ARCHIVES-- ACCESS STUDY, OR BY REMICADE CLINICAL TRIAL RESULTS. Hopefully that will pull it up for you.

The guys doing the research are closer to figuring out some of the components-- but still so much is up in the air. They know all of us produce to much TNF-a, and that our bodies don't clear it out-- so that is why there is the emphasis on the Biological drugs that block the production of this protein. It seems to be helping some of us, but as yet is not the "cure-all."

Hugs,

Tracie

NS Co-owner/moderator

Re: Good morning all......... ...It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If

you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but

disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and

the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that

you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. "A merry heart doeth good like a medicine"------------ --------- --------- ------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc. net/chat/ index.php Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

Jackie,

I don't know that it is because we worked in medicine. I was a medical administrator for 17 yrs, and when I got sick, I was managing a small practice for an Internal Medicine MD that was treating the missionaires that where here from Israel and Egypt and Lebanon. It was his turn to handle them that year, and they definately had stuff we'd never seen. We're only talking about a handful of people that whole year, but they did present with "viruses" he'd never seen. This was actually a very small office, only 4 employees, so we did everything from back office to billing to blood draws-- so it didn't matter what your "title" was-- you got exposed to all of it.

What they know from the ACCESS study (the one that I was part of along with the Infliximab -Remicade- clinical trial) is that there seems to be a genetic predisposition for auto-immune disease that was common throughout all of us.

Autoimmune diseases include Rheumatoid Arthritis, Diabetes, MS, Lupus and more. So you could be from (and probably everyone is) a candidate for AI disease. My mom, grandparents on both sides of the family are all diabetics. They also all have heart disease and arthritis issues.

Also from the ACCESS study, they have found a common link for pesticide exposure. I grew up in No. California in the middle of the rice, almond and walnut orchards. Prime area for pesticide, fertilizer, insecticide use. If it wasn't being applied by tractors spraying in the fields, it was being applied by cropdusters flying overhead. BAck in the 60's and 70's-- they also allowed the rice fields to be burnt after harvest every year-- today they limit how much they can burn-- but the air quality in the valley is crap! I know going down the hill we only see across the Sacramento Valley probably less than a month out of the year (on clear days you can see all the way across to the Coastal Range-- a 100 mile drive) and it's few and far between now. and I both worked for a pest control company-he was a technician and I was the office manager (I got to tell him where to go--daily!) and we brought the "bug"

truck home nightly.

The next job I had was working for an Ophthalmologist, managing a multi-million dollar practice, and because the doc was a major player in the SDA church here in town-- they did take turns helping and hosting the missionaires. I spent 8 yrs there. Next I went to the Internist, then to a huge group office that all the local docs formed as a group. That exposed me to 19 different docs and offices... I ended up working for an ambulance company, and we transported a huge number of indigents with diseases like ours. We did the "non-emergent" transports-- and though I was generally in the office it was still exposure to some weird stuff.

After that I ended up working for the phone company-- and that is where I relapsed into this-- and that was a job where stress was an extreme issue. Crazy part was, the office we were in had been a out-patient care center for the local hospital-- and they had some kind of huge problem with bacteria in the cooling system. Many of the employees came down with weird respiratory shit-- and no one could say what it was. They eventually had to tear out all the heating and cooling ducts and replace them.

So I had a genetic predisposition, an enviromental insult to my immune system in the way of pesticides and rogue illness-- and here I am.

I am the only one in my family to have sarcoidosis, although I have a cousin in Woodland, CA that has MS. So how knows.

The ACCESS study showed this, a fair number of lung sarcoidians with a bacterial infection in the lungs (not mycobacterial) and genetics, and enviroment. But it still is not specific and it doesn't account for every single participant.

It also showed that TB patients had the mycobacteria-- although sarc did not. So the thought from the LA docs was that maybe the bacteria we had in common was similar to a rogue TB-- something that had mutated from "common" TB.

I believe I posted a link to this study-- you can search for it in the ARCHIVES-- ACCESS STUDY, OR BY REMICADE CLINICAL TRIAL RESULTS. Hopefully that will pull it up for you.

The guys doing the research are closer to figuring out some of the components-- but still so much is up in the air. They know all of us produce to much TNF-a, and that our bodies don't clear it out-- so that is why there is the emphasis on the Biological drugs that block the production of this protein. It seems to be helping some of us, but as yet is not the "cure-all."

Hugs,

Tracie

NS Co-owner/moderator

Re: Good morning all......... ...It's a beautiful morning here in NC after two days of much-needed rain. I haven't posted often but I've learned so much from this group since I discovered it a couple of months ago. Welcome to all who have recently joined and my sympathies that you had to search for us. If

you care to know any more, here is my story. I'm curious to know how common my course has been since my doctors leave me with the impression that they still don't quite know what to do with me.By profession I am a nurse but had never even heard of sarcoidosis and especially not neurosarcoidosis until I was diagnosed in Nov of '07. Exactly one year ago yesterday, April 28,2007, I began having fever of 101.5 & 3-4 major night sweats per night which eventually sent me to my truly wonderful PCP. Several CAT scans and many vials of blood later I found myself in the Infectious Disease Clinic at Duke where they eventually told me (again after many, many vials of blood later) they didn't know what was wrong with me. To confuse them further, my fevers had just about gone away completely and I really had no other real complaints. Because of an elevated ACE and a couple of very small but

disconcerting hilar lymph nodes my PCP continued to follow me with some degree of puzzlement. He was really afraid that I had some kind of lymphoma but my symptoms didn't fit that diaganosis either. Within a couple of months, I began showing some neurological symptoms (tremors especially in my hands, balance and equilibrium issues, and vision problems) and I told myself that when someone else noticed, I would call my doctor. So, by September's end, my PCP ordered yet another CAT scan and admitted me to the Neuro Unit at Duke University Hospital. A tentative diagnosis of NS was confirmed a few weeks later by a biopsy of the lymph nodes in my chest and I was started on 60 mg of prednisone. Unfortunately, within a couple of weeks I developed infection in both my pancreas and in my gallbladder so the prednisone had to be decreased to 40 mg to prepare me for surgery to remove my gallbladder and

the gallstones causing all of the problems. That happened in January and all went well. Since then, I have had two MRI's. the first one (Jan '07)showed a couple of new granulomas and my doctor decreased my pred to 30 mg mainly b/c of side effects. The second (April '07)) showed no further changes. I have an appt with the neurologist at Duke next month. He has mentioned decreasing my pred to 25 and possibly adding CellCept to the mix. I haven't worked since Sept of last year mainly b/c of the continued balance issues as well as some visual problems. Currently, my biggest frustrations come from my decreased ability to think clearly and the extreme fatigue. Not to mention the difficulty in planning ahead b/c of not knowing how I will feel from day to day. I hope I haven't overstepped my bounds by unloading. Hopefully, my experience will strike a common chord with someone and help you know that

you are not alone. This group is great for that.All the best to you,Sharon in NCTry to laugh every day. "A merry heart doeth good like a medicine"------------ --------- --------- ------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc. net/chat/ index.php Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database