Does anyone have abscessus?

I had 3 cultures I didn’t mention that were positive for pseudomonas. I don’t know if that looked beyond that at the time (over 2 years ago). Treated me with Cipro, but never cleared. My last two, one by bronchoscopy, were positive for pseudomonas and Mycobacterium Abscessus. The last and bronchoscopy was February.
I encountered another woman on one of these groups that also goes to UAB unless it was you! I’ve lost track. She went to NJH also, but quit going there.
Yes, I’m thinking that UAB is the most logical place for me to go next. It’s a not fun drive up 65, but at least it’s doable. I need a place that corresponds. I sent at least four messages and phone calls to my current ID doctor and it was over two weeks before she called to see how I was doing on my meds! She never ordered my PICC line and she had prescribed Arikayce from Publix!!! That’s when I decided she didn’t know enough even though she presented like she did.
Pray for all of us! 🙏🏻

Sorry, What is UAB?

I go to UAB as well. Do you live near there? I have to drive 4 hours but it is worth it as my local pulmonologist was not helpful and rude as well.

You need a Pulmonologist that has the experience and training to do the right thing for you. Find a Pulmonologist / Hospital that specializes with these Pulmonary diseases, the sooner the better.

It’s a requirement to be accepted as a patient with Dr. Garcia.
“There must be a lung infection confirmed either twice in sputum or once in bronchoscopy, radiographic evidence of the disease and symptoms attributed to the infection and that are significant enough that treatment is justified” said Dr. Garcia. One of his current patients told me the same thing.
I live in coastal Alabama. My primary care and I discussed options. Mayo Jacksonville being one, but according to feedback from their website, they are not accepting new NTM patients.
NJH is everyone’s first recommendation, but just not feasible for me. I’ve been to two local infectious disease doctors and they don’t have the expertise. The second one told me I was lucky that the first one didn’t kill me and she was so sorry I’ve been put through this. I thought I’d hit the jackpot with her, but she doesn’t have the experience with these meds. She ordered Arikayce from Publix (grocery store pharmacy) and had no idea that it was outrageously expensive for most. She forgot to order my PICC line, so my meds were ready, but I was not. She told me she would admit me to the hospital to start treatment because I’ve had severe reactions to previous meds. Didn’t happen. So, red flags everywhere and I decided to move on. Looking for that expert!

@cwal and bamaqueen. I live just north of Montgomery. I've connected with another MAC patient that lives in Pike Road and uses Dr. Solomon at UAB. She had been to Nat'l Jewish for a few years but has stopped going to them. bamaqueen, would your current doctor do a referral to Dr. Garcia? It sounds like you have lots of proof of this disease(s) to ?qualify you to be seen there. Did you speak to someone at UAB who said no? I was referred to Garcia but when I went to Atlanta I was a "self referral." Don't give up. Sounds like the medication situation you went through was a real fiasco. You need a doctor change really bad.
Faye

Agree! It sounds like plenty of evidence of serious lung disease for @bamaqueen. Perhaps just need to submit the documentation? And would your current physician not assist you with submitting this?

Thank you for all the input. It’s hard to keep track of everyone.
My primary care doctor will assist me. He’s very accommodating. He referred me to USA (University of South Alabama) in February. They have a very impressive pulmonary department. Things just did not work out when we got to treatment. Not all their fault because my mother was dying at that time and everything got put on the back burner.
I’m having a CT Thursday and waiting to see the results to decide what to do next.

University of Alabama Birmingham
They have a relatively new NTM clinic.

Thanks