Pulmonologist versus Infectious Disease Dr

I have had bronchiectasis, not with MAC, but other infections such a p.anguerosa and streptomonas maltophilia for 15 years now. I argued with antibiotics but in the end it was/is the only thing that works. Bronchiectasis is a chronic disease that forces you to live with compromises, whether you treat it or not. There are fewer and less onerous compromises if you treat it. My vision and hearing, as well as my susceptibility to muscle-related injuries, have been negatively impacted by my meds over the last decade, but I can breathe. Breathing is better than the alternative. Key to my physical and mental health has also been lots of aerobic exercise (bike riding for me). I hate exercise, but these days, when I go to my pulmonologist's office, I am often one of the only persons my age (70) not walking around with an oxygen tank, something my doctor says is largely due to the exercise. My experience with the ID docs when I started on this journey was not so great— they fixed nothing— but you do what feels right to you and don't be afraid to look at something different if things don't get better in a few months.

To bbeers, what difference does it make if your Pulmonologist wouldn’t like you to check with an ID doctor? You have to do what’s best for you. Bottom line is if you don’t do it who will?

Thank you for the reminder that sometimes antibiotics are better than the alternative.
Sue

@bbeers I was diagnosed with mild bronchiectasis and MAC five years ago by a pulmonologist who has since moved away. I had coughed up blood, but had no other symptoms and great spirometer readings. The pulmo had me visit an ID doctor, who monitored my health, but agreed that I didn't need treatment. I started on 7% saline after reading about it here. The first ID doctor retired and my new one, who treats MAC patients, told me to keep nebulizing the saline if I wanted, but that I didn't need to see him again unless I had some symptoms. He felt that many people were getting "treated" who didn't need to be, and that sometimes the "treatment" is worse than the disease. (I am 76. I exercise, walk about 2 miles/day, and try to eat healthy food.)

My experience is most ID docs don’t know much about Bronch. I was treated for MAC for 4 years by ID who never suggested airway clearance. I had bronch and he didn’t even tell me. I immediately went to a pulmonary who put me on mandatory 2x day nebulizing and PEP. Bronch had worsened significantly during that time. I have severe bronch now and always wonder if I wouldn’t be so bad if I was being treated by a pulm instead on just an ID. Good luck!

I also take all 5 pills first thing in the morning. I like getting it out of the way. Then I do my airway clearance ....and by the time I'm done it's been at least an hour. So I can eat!
Laura S.

The lack of extensive knowledge of lungs by the ID doc is why we need a team - pulmonologist, ID doc, PCP, radiologist (for scans), specialty lab, pharmacist, maybe a counsellor - each works best in their own "playpen" - then communicates their knowledge back to the team.

To expect otherwise is like expecting one person to have the expertise to build a whole house from foundation to wallpaper - there is the rare craftsman who can do it all well, but most rely on a team to bring it all together.
Sue

Laura, how long have you been on the 3 antibiotics?

Thanks to you Sue and this site I just had my first visit with an ID doctor locally. I was diagnosed with BE in August 2022. Found Mayo Clinic Connect just a few months ago and after reading the posts I have learned a great deal and then asked my PCP for a referral.... He referred me to an ID doctor with years, and years of experience with MAC etc. He has suggested, his opinion, after reading the test results from October at NJH, that I go on Biaxin and Myambutol due to the bacteria results that were found and diagnosed in October while I was at NJH for the week long testing. NJH read the MAC was minimal and the head doctor in charge of my visit said it wasn't time to start anti biotics because the amount was minimal. Local pulmonologists and Tyler pulmonologist had all the same information from NJH and did not suggest my going on anti biotics. So, this shows you how different thoughts are. The ID feels that it is worth taking the chance with the anti biotics (the side affects and what we would do if side effects began was discussed and who to see also, .my eye doctor etc. ) to see if it will clear the bacteria or at least help by subsiding my need to constantly clear what is nearly constantly in my throat. He mentioned what he sees with me (NJH tests and pictures on my cell phone of what I bring up and out) to be the same symptoms as the Lady Windermere Syndrome. I had read about the syndrome a while ago when trying to understand the constant clearing of the throat and the foamy white bubbly "sputum"/"mucus" that comes up much of the time. He also did agree to Mucinex and NAC.
He asked me to give it all more thought and let him know what I came to as a decision after my doing my due diligence, thought/research etc. I am also waiting for the mid February sputum test results sent to Tyler. Thoughts Sue..... and others who have been expereincing this chronic disease called BE for a while etc.

Hello, Reneemc-
I started June 5, 2023. First negative sputum test for MAC was July and both tests since then. So I'm holding my breath they will continue negative until July '24!
So far, the main side effect is a raging flare up of a chronic skin rash that I've had since 2001. It had been quiet and diminished to only my ankles for 21 years. Now it's back all over my body.... and itchy. I cope with ointments from the dermatologist. It wouldn't work to try substituting antibiotics, because it takes so long for this to clear up that it would be impossible to know which is the cause... maybe more than one. So I'm hanging in there! Good luck on your journey! Laura S.