Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Spoke with my ID doc today. Said he has been unable to find anyone doing the dna testing we have all come to know about on this site. Checked with UT Tyler and Amer. Jewish. The doc head of sarcoid at Amer Jewish told him there was not enough data to support not using standard therapy. Whereas sarc may be bacterial driven he suspects it's an undiscovered one as yet. PCR testing suggests new bacteria. He said the bacteria has never grown out and that sarc is granulomas and bugs don't cause granulomas. He is willing to test for the slow growing mycobacterium, etc and said the hospital lab in Portland can do those tests but thinks they will come back negative. I respect him. He suggests going back on the rifampin and inh. or other proven drugs. My brain is in another one of those fogs, they seem cyclical, and in a few days I should be back to my new normal sooooooo I am confused and would appreciate any feedback. Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Glenda, question? Whenever they have put me on the rifampin they have generally put me on IV vancomycin to take care of all bugs they try to kill it all so we did not get into a mess. I too have had the hepatitis along with all this other it seemed when it all started out I was inflammed everywhere, I already had my shunt for the hydrocephalus because that was easy for them to diagnose by the CT. They didn't find all the other till they started doing MRI and other tests. Take care of yourself and I hope you get answers. Your Friend in Texas, Jeanna -- DNA testing/What now Spoke with my ID doc today. Said he has been unable to find anyone doing the dna testing we have all come to know about on this site. Checked with UT Tyler and Amer. Jewish. The doc head of sarcoid at Amer Jewish told him there was not enough data to support not using standard therapy. Whereas sarc may be bacterial driven he suspects it's an undiscovered one as yet. PCR testing suggests new bacteria. He said the bacteria has never grown out and that sarc is granulomas and bugs don't cause granulomas. He is willing to test for the slow growing mycobacterium, etc and said the hospital lab in Portland can do those tests but thinks they will come back negative. I respect him. He suggests going back on the rifampin and inh. or other proven drugs. My brain is in another one of those fogs, they seem cyclical, and in a few days I should be back to my new normal sooooooo I am confused and would appreciate any feedback. Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 February 5, 2004 Report Share Posted February 5, 2004 Dear Glenda, isn't on the list at this time so you'll have to email her privately if you want her advice. So far I have only found one lady Dr in the USA who believes this DNA stuff is accurate. All the links gave me for Australia are duds. The people I contacted about it said that they are not doing that sort of testing, and that no testing is being done for sarcoidosis in Australia. However, Rifampin was the first drug to squash my ESR. It made me ill and I had to stop if after one week, (I developed a rare syndrome) but apparently you can have one tablet once a month and it can still help. It stays in your body for a long time. My markers went back to normal after about two months off the Rifampin. Yesterday I got the results for INH back and it has squshed a considerable few my LFT's. Unfortunately it has done nothing for my ACE which is up, ESR & CRP are around where they usually are. BUT... I am on a tiny dose. TINY dose. 50mg Mon, Wed, Fri. Just to ease into the drug. This week I add Saturday. I see my microbiologist/pathologist/immunologist - who I also sent info on the DNA stuff to - on Monday, so I will talk to him then and get his opinion I will find out if this can be done, what it entails, and what he intends to do about it. I'm pretty stubborn and I do think this DNA thing makes sense, but no where can I find info, or more to the point, Doctors who deal with bugs, that say this is going on - other than one doctor in the USA. I'll let you know what happens on Monday. If you decide to go back on the TB meds, do it slowly and at low doses. It's easier on our system and a small dose seems to make a big difference anyhow. Much better than posioning ourselves. With love, Aisha. -- DNA testing/What now Spoke with my ID doc today. Said he has been unable to find anyone doing the dna testing we have all come to know about on this site. Checked with UT Tyler and Amer. Jewish. The doc head of sarcoid at Amer Jewish told him there was not enough data to support not using standard therapy. Whereas sarc may be bacterial driven he suspects it's an undiscovered one as yet. PCR testing suggests new bacteria. He said the bacteria has never grown out and that sarc is granulomas and bugs don't cause granulomas. He is willing to test for the slow growing mycobacterium, etc and said the hospital lab in Portland can do those tests but thinks they will come back negative. I respect him. He suggests going back on the rifampin and inh. or other proven drugs. My brain is in another one of those fogs, they seem cyclical, and in a few days I should be back to my new normal sooooooo I am confused and would appreciate any feedback. Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Dear Glenda, isn't on the list at this time so you'll have to email her privately if you want her advice. So far I have only found one lady Dr in the USA who believes this DNA stuff is accurate. All the links gave me for Australia are duds. The people I contacted about it said that they are not doing that sort of testing, and that no testing is being done for sarcoidosis in Australia. However, Rifampin was the first drug to squash my ESR. It made me ill and I had to stop if after one week, (I developed a rare syndrome) but apparently you can have one tablet once a month and it can still help. It stays in your body for a long time. My markers went back to normal after about two months off the Rifampin. Yesterday I got the results for INH back and it has squshed a considerable few my LFT's. Unfortunately it has done nothing for my ACE which is up, ESR & CRP are around where they usually are. BUT... I am on a tiny dose. TINY dose. 50mg Mon, Wed, Fri. Just to ease into the drug. This week I add Saturday. I see my microbiologist/pathologist/immunologist - who I also sent info on the DNA stuff to - on Monday, so I will talk to him then and get his opinion I will find out if this can be done, what it entails, and what he intends to do about it. I'm pretty stubborn and I do think this DNA thing makes sense, but no where can I find info, or more to the point, Doctors who deal with bugs, that say this is going on - other than one doctor in the USA. I'll let you know what happens on Monday. If you decide to go back on the TB meds, do it slowly and at low doses. It's easier on our system and a small dose seems to make a big difference anyhow. Much better than posioning ourselves. With love, Aisha. -- DNA testing/What now Spoke with my ID doc today. Said he has been unable to find anyone doing the dna testing we have all come to know about on this site. Checked with UT Tyler and Amer. Jewish. The doc head of sarcoid at Amer Jewish told him there was not enough data to support not using standard therapy. Whereas sarc may be bacterial driven he suspects it's an undiscovered one as yet. PCR testing suggests new bacteria. He said the bacteria has never grown out and that sarc is granulomas and bugs don't cause granulomas. He is willing to test for the slow growing mycobacterium, etc and said the hospital lab in Portland can do those tests but thinks they will come back negative. I respect him. He suggests going back on the rifampin and inh. or other proven drugs. My brain is in another one of those fogs, they seem cyclical, and in a few days I should be back to my new normal sooooooo I am confused and would appreciate any feedback. Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Dear Glenda, isn't on the list at this time so you'll have to email her privately if you want her advice. So far I have only found one lady Dr in the USA who believes this DNA stuff is accurate. All the links gave me for Australia are duds. The people I contacted about it said that they are not doing that sort of testing, and that no testing is being done for sarcoidosis in Australia. However, Rifampin was the first drug to squash my ESR. It made me ill and I had to stop if after one week, (I developed a rare syndrome) but apparently you can have one tablet once a month and it can still help. It stays in your body for a long time. My markers went back to normal after about two months off the Rifampin. Yesterday I got the results for INH back and it has squshed a considerable few my LFT's. Unfortunately it has done nothing for my ACE which is up, ESR & CRP are around where they usually are. BUT... I am on a tiny dose. TINY dose. 50mg Mon, Wed, Fri. Just to ease into the drug. This week I add Saturday. I see my microbiologist/pathologist/immunologist - who I also sent info on the DNA stuff to - on Monday, so I will talk to him then and get his opinion I will find out if this can be done, what it entails, and what he intends to do about it. I'm pretty stubborn and I do think this DNA thing makes sense, but no where can I find info, or more to the point, Doctors who deal with bugs, that say this is going on - other than one doctor in the USA. I'll let you know what happens on Monday. If you decide to go back on the TB meds, do it slowly and at low doses. It's easier on our system and a small dose seems to make a big difference anyhow. Much better than posioning ourselves. With love, Aisha. -- DNA testing/What now Spoke with my ID doc today. Said he has been unable to find anyone doing the dna testing we have all come to know about on this site. Checked with UT Tyler and Amer. Jewish. The doc head of sarcoid at Amer Jewish told him there was not enough data to support not using standard therapy. Whereas sarc may be bacterial driven he suspects it's an undiscovered one as yet. PCR testing suggests new bacteria. He said the bacteria has never grown out and that sarc is granulomas and bugs don't cause granulomas. He is willing to test for the slow growing mycobacterium, etc and said the hospital lab in Portland can do those tests but thinks they will come back negative. I respect him. He suggests going back on the rifampin and inh. or other proven drugs. My brain is in another one of those fogs, they seem cyclical, and in a few days I should be back to my new normal sooooooo I am confused and would appreciate any feedback. Glenda Quote Link to comment Share on other sites More sharing options...
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