[filelink] Results of typical standard sarcoidosis treatment by a sarcoidosis 'expert'
This message was recently posted on a sarcoidosis support message board. Bob Baughman is the best, or second best, Sarcoidosis specialist in the world (reputedly). This is how he treats the disease:
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Hi guys,
I havae written in a while but I read daily.I'm in Ohio so I go to Dr.Baughman I went for a Ct scan of my chest on Friday and they put it on a CD and I gave it to him. I thought that's amazing.Take a chest x-ray and its on a Cd he said oh tahts your copy you can use it as a screensaver on your computer I told him I have prettier things on my computer. I'm an intresting case I've had sarc since 1992 but I moved to Ohio in 2001.I go for Remicade Iv therapy every four weeks and I have pulmnonary hypertension.The metroxtate, enbrel, humira, none of that works on me. But the $6,000 ventavis inhalation therapy that you take every two hours while wake does{thank God my husband has good insurance}the remicade helps my arthritis and sarc but now my veins are so thin and brittle I'm on coumadin and and a drug induced diabetes fro the prednisone,they want to install a port to draw blood from plus do another heart cath to check the pressures. I haven't had a heart cath in about a year the specialist I had argued me down that he didn't put me on coumadin and when I showed him the logbook where you record the minutes for the ventavis he wanted to know what it was?His nurse was trying to tell him he wouldn't listen,so I told him I might just be anumber to you but i'm somebody's wife,mother,sister,grandma,and I walked out.I got pulmonary hypertension from taking phen-Feb when I lived in Texas I thought if lost some weight it would help me to breathe better. I never suspected anything was wrong they always took my b/p and did EKG.So Dr.Baughman called me Friday said he got another cardiolgist to do the heart cath and they will do it the same time as the port and not to take the coumadin two days prior to the procedure because it would cause excessive bleeding. I'm on continous oxygen I have to go ofor a job interview Wed,I'm a paralegal graduated with tanker in 2004. I've only worked six months since I graduated the company lost there main client sometimes I feel as if I went to school for nothing.
Rita
