I'm being treated for TB....

Still just suspicious for tb, don't have a positive PPD; just have a suspicious ct scan (apical scarring) combined with a pretty consistent low grade fever. Saw ID doc this morning and she has decided to treat me for tb and see how my fever responds to the antibiotics. Because tb is the reason for the antibiotics, she had to report me to the public health department. I had to go over there to pick up the package for a sputnum culture (ick); needless to say I was treated like a pariah. I had to ring a separate doorbell, and was taken immediately to a doctor's office that opened to the outside of the building. It had special ventilation, and when the tb nurse came in, she was wearing a mask and turned on the airconditioner, which I guess provided even more ventilation. She told me not to be alarmed; it was just protocol. After talking with her, she realized that if I had tb, it was latent tb, not active tb, and I wasn't contagious. She called me a very interesting case--not your typical tb patient. Don't know whether I should be insulted or not:) Nevertheless, it was quite an experience. In any case, ID doc called my rheumy this morning while I was there, and I have to stop the enbrel for the next 9 months or so while I'm being treated for tb! Rheumy kept me on the mtx and plaquenil, presumably to help with the rebound arthritis (which happens when you come down off one of the tnf-inhibitors). My head is still spinning--ID doc is very aggressive--she doesn't mess around. She got very indignant because when she tried to call my rheumy, the receptionist wouldn't let her talk to him unless it was an emergency. She asked her pointblank how many rheumatological emergencies they actually had. While I'm sure there are some emergencies, I would imagine it's not that common in a rheumatology office. She eventually got him on the phone, and after she finished, she proceeded to tell me that she will and often does go to bat for her patients. If they need something, she will get it done. That made me feel very secure having her as my ID doctor. that's all for now--sorry for the discombobulated post. Things just happened so fast...

Elcamino

wow! that doc ROCKS!!!!!! yeah...that's pretty much TB protocol for ya.
are you starting Rifampin? turns your pee red! very cool.

another wow from me too el. hey just a thought have u had ur kids tested? i know u hate to prick little ones unnessarily but i just wondered? they probaby r symptom free right? so maybe not needed? take care and good luck.

Hi! I just completed an 18 month course of antibiotics for an atypical form of TB called micobacterium avium intercellular (MAI). It takes a long time to incubate (about 3 weeks) so it takes longer to get a definitive diagnosis.  The specimen had to be sent to a special laboratory in Denver.  It is more common among HIV and chemo patients, but with the immunosupressant drugs we are on, we are susceptible, too! Your symptoms seem more like atypical TB than regular TB.  It is NOT a contagious form, it is just more persistant. The bacteria are present in the air, but "normal" people are resistant to them. The recommended treatment is 12 to 18 months on the antibiotics instead of 9 months.  Zithromax is used instead of INH. Rifampin and ethambutol is the same.  BTW, I never had a positive PPD because this is NOT TB. You should ask the ID doc about this.  My ID said that this had been pretty rare, but he has seen an increase in patients with variety of autoimmune diseases. Good luck! Frayda

Hey Freyda,

Interesting about the atypical tb.  I would guess this is what my ID doc had in mind--she told me repeatedly that the PPD test means  next to nothing; it's simply the best screening measure they have.  I'll keep that in mind--I'm doing a sputnum culture right now, but tb nurse at the public health department told me that was likely to come up negative as well.  What test did you have that confirmed the atypical tb?  ID doc offered to send me for a bone marrow culture, but said it was very painful and will still not be definitive.  I guess I'm questioning whether I should have agreed so readily to take these drugs without having a definitive dx.

Keah, yes INH is one of the drugs prescribed.  ID doc told me that she would be monitoring my liver enzymes closely (every two weeks for the first month and then once a month after that).  She was a little concerned about my taking the mtx with the INH, so she called my rheumy and asked.  he said it was ok to leave me on the mtx?  We'll see.  I don't typically drink alcohol anyway (makes me violently ill), but since starting the mtx, I decided that I should avoid it altogether regardless.  My husband doesn't drink either (his mother was an alcoholic).   Our typical dinner bill is very reasonable because we don't order any alcohol.

Elcamino