Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 I am so sorry to hear you have this dreaded disease. but welcome to this group its great. hugs and blessings and a pain free day jessica Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Hi , is the only other Vet on the list--at least the only one I know of. As far as sarcoidosis being caused by the Gulf War-- anything is possible. Since they don't know what causes sarcoidosis, and it doesn't have a cure-- I'm sure the Feds aren't going to take any action ot help--at least not without a fight. We have over 350 people on this site, and there seems to be alot of us that worked in the medical field, or were teachers. I spent 17 years in medical administration--working for MD's that treated a fair amount of missionaires from all over the world. One thought is that this may have a rogue TB like virus that starts up our immune systems, and then the immune system decides our body is the enemy--and continues it's attack, even after the initial problem is gone. Stress seems to play a huge part in all the auto-immune diseases--and then add the dust and sand and chemicals that you were exposed to in the GW-- and you've got a problem. Is your sarcoidosis just in your lungs, or is it systemic and neuro? Let us know how we can help. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 my sarcoid is in my lungs but i have systematic sarcoid as well --- tiodaat@... wrote: > Hi , > > is the only other Vet on the list--at least the > only one I know of. As > far as sarcoidosis being caused by the Gulf War-- > anything is possible. > > Since they don't know what causes sarcoidosis, and > it doesn't have a cure-- > I'm sure the Feds aren't going to take any action ot > help--at least not without > a fight. We have over 350 people on this site, and > there seems to be alot of > us that worked in the medical field, or were > teachers. > > I spent 17 years in medical administration--working > for MD's that treated a > fair amount of missionaires from all over the world. > One thought is that this > may have a rogue TB like virus that starts up our > immune systems, and then the > immune system decides our body is the enemy--and > continues it's attack, even > after the initial problem is gone. > > Stress seems to play a huge part in all the > auto-immune diseases--and then > add the dust and sand and chemicals that you were > exposed to in the GW-- and > you've got a problem. > > Is your sarcoidosis just in your lungs, or is it > systemic and neuro? Let us > know how we can help. > > Sincerely, > Tracie > NS Co-owner/moderator > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Welcome . Nice to meet you wish it wasn't because of this illness. I am not a vet and I have never been in the medical field HOWEVER when I was in grade school I was exposed to tb when one of my good friends had it. Interesting...... Thanks for more info Tracie! grannylunatic@... __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 when I was in grade school I was exposed to tb when one of my good friends had it. Interesting...... Thanks for more info Tracie! Have they done a TB test? That would be a good place to start, as most of the meds that are working seem to be a problem with TB. It is amazing --pray for answers. Love, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Hi , This is Terrie Tarbox, I'm a veteran too. I spent 21 years in the Army Nurse Corps. I got sick with the Sarcoid while on active duty and was medically retired. My Sarcoid is everywhere, Skin, Neuro., Bone, Nasal, Oral, Glands, Optic, and some Lung (who knows where else). I went from marathon running in 1998 at 130 pounds to Motorized wheelchair in 2004 and now around 240 pounds. I'm on oxygen 24/7, CPAP at night, 2,000mgs of Neurontin for seizures (plus about how many others) and Morphine by mouth for bone & Neuro pain every 12 hours, Home health aides started about 4 weeks ago to help me since I can't walk or stand. That was the hardest time for me when they started coming. I cried the entire 1st week! As for my Sarcoid, I have never had a remission and the drugs have only slowed down the progression. I've been on high dose steroids for 5 years, they tried Plaquinel, Imuran, Cytoxan, and now I'm on Steroids, Methotrexate shots (1x per week) and 500mg IV Remicade. I'm now flaring up bad on the drugs so we might try IV Chemo to see if this will help. I hope this info help you in you treatment and Sarcoid journey. I usually don't get on line to email but do read the entry you all post. But I might be on more now since my husband got me a laptop for Christmas so while I'm in bed (I have a hospital Bed) I can get on line. Take Care and if you have any other questions please feel free to contact me. My email address is tarbox5@... good luck and my thoughts and prayers are with you and your family. Always Terrie Re: Help Please, my sarcoid is in my lungs but i have systematic sarcoid as well --- tiodaat@... wrote: > Hi , > > is the only other Vet on the list--at least the > only one I know of. As > far as sarcoidosis being caused by the Gulf War-- > anything is possible. > > Since they don't know what causes sarcoidosis, and > it doesn't have a cure-- > I'm sure the Feds aren't going to take any action ot > help--at least not without > a fight. We have over 350 people on this site, and > there seems to be alot of > us that worked in the medical field, or were > teachers. > > I spent 17 years in medical administration--working > for MD's that treated a > fair amount of missionaires from all over the world. > One thought is that this > may have a rogue TB like virus that starts up our > immune systems, and then the > immune system decides our body is the enemy--and > continues it's attack, even > after the initial problem is gone. > > Stress seems to play a huge part in all the > auto-immune diseases--and then > add the dust and sand and chemicals that you were > exposed to in the GW-- and > you've got a problem. > > Is your sarcoidosis just in your lungs, or is it > systemic and neuro? Let us > know how we can help. > > Sincerely, > Tracie > NS Co-owner/moderator > __________________________________________ Yahoo! DSL - Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Me & my 3 siblings all had chest xrays after the tb tests showed positive & they said we had been exposed to histoplasmosis(spelling?) & that was common in the Ohio river valley area. If I remember correctly. grannylunatic@... __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
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