Flu-like symptoms

...and some of us educate our doctors about bronchiectasis! I agree with you for a MAC diagnosis you want someone who has treated it before you.

I no longer see my ID doctor, or my original pulmonologist. I changed to a pulmonologist that specializes in bronchiectasis now. Thru this site I realized I was getting some misinformation from both doctors, even though they said they treat many MAC patients. I was put on levequin after the rifampin didn't work for 4 months but then got tingly toes and joint pain. My sputem was not tested for 7 months on the 3 meds, which I had to initiate, (which is one more reason I switched drs.) Luckily my sputem sample from July was negative of Mac. so now I am on 500 mg. azithromycin and 1400 ethambutol 3 x week. I am testing sputem every month to make sure MAC doesn't come back while only on the 2 meds. If all goes okay, I'm hoping to get off everything by May/June. I was so hesitant to start meds. and the first docs. basically scared the crap out of me so I gave in. At this point I'm too far in my commitment to stop. Taking the meds. did get a bit easier over time, stomach is not as touchy and I'm not getting pains like I did in the beginning. Good luck and speak up and ask lots of questions, I was too intimidated a year ago.

I am fairly new to BE and this Support Group.
What I have learned so far is that unless your pumonologist is well educated on all aspects of Bronchiectasis with many Bronchiectasis patients, you may not need an ID doctor, however, Dr. Elizabeth Ann O'Donnell from Georgetown University in The World Bronchiectasis webinar indicates it is wise to have an ID doctor on your medical team. I just secured an appointment with an ID doctor locally, and especially since my Pulmonologist who specializes in Bronchiectasis is in a Bronchiectasis program out of state. I personally will be glad to have him, the ID doctor, as a part of my medical care. This particular ID doctor I have contacted, from what I have learned, has other BE, Bronchiectasis patients. Too many pulmonologists from what I have learned and heard are not as informed and enlightened about Bronchiectasis in general and not well schooled on how to go about treatment for MAC etc. That is what I have come to learn and understand about the pulmonologists locally and of those not associated with specialized Bronchiectasis programs. However there are, from what I have read in this group, individuals who have found pulmonologists who are well educated, informed and have up to date knowledge on BE. I also have learned in the past few years with my trying to find out what was wrong with me, (Bronchiectasis) I prefer seeing specialists well educated in the specific health problem I am having and I have interpreted rightly or wrongly that Medicare is O.K. with that per my working through Medicare...at least so far no problems seeing specialists. You might also like to go to the page in this Mayo Connect that talks about Pulmonologist vs Infectious Disease Doctor. Hope this gives you food for thought.... for what it is worth.

Thank you… I am beginning to think it might be a good idea to reach out to an ID doctor in addition to my pulmonary doctor.

One of the best ways to do this is to ask your pulmonologist for a referral to an ID doc with whom they have a working relationship, so you can form a team rather than a competition between doctors. With luck, they will be in the same medical record system, so all of your history, consults and test results will be accessible to both of them.
After a "false start" with my first pulmonologist, that is how I have done it - now that I am stable off meds, the pulmo follows me and we will only bring the ID doc back in if things flare up again.
Sue

...and some of us educate our doctors about bronchiectasis! I agree with you for a MAC diagnosis you want someone who has treated it before you.